Creating Cancer Caring Communities
Exciting news! Age UK Cornwall & Isles of Scilly and Macmillan Cancer Support are teaming up for a further two years.
Teamwork will get us where we want to be.
According to Cancer Research UK, half of us will be diagnosed with cancer at some point in our lives. However, the good news is that progress is being made all the time. The life expectancy of people treated for cancer is increasing all the time, and researchers are working hard to develop ever better treatments and cures. In fact, over the last 40 years, the number of people who survived cancer has doubled.
You are in the right place to look for support:
The numbers above are encouraging, but it is still very likely that we will all be affected by cancer at some point in our lives. It might be our own experience or impact us through a family member, friend, neighbour, or colleague.
In whichever form cancer intrudes into your life, it is likely that you will need help, support, and lots of information. You are in the right place here.
Age UK Cornwall and Isles of Scilly (AUKCIOS) provides support services across Cornwall, helping people age well, and stay happy, safe, and in comfort. Their ambition is to inspire communities and people to age well. You can find a lot more information on this here.
In partnership with Macmillan, the extensive network that AUKCIOS has established across Cornwall now helps anyone in the county affected by cancer. Together, they provide a doorway to a vast array of information on cancer-related issues:
- How to reduce the risks of developing cancer
- Where to find cancer support in Cornwall
- Where to find cancer support nationally (help is available both online and by phone)
- How to receive support at all stages of cancer, including new diagnosis, end-of-life and life in remission.
- How to access support for the diagnosed person and for their family
- Answers to questions you might not want to ask your GP
Our Campaign for the next two years:
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Wellbeing Hubs
Our Mission: AUKCIOS and our partner organisations provide a number of local Community Wellbeing Hubs across Cornwall. These are friendly, welcoming, and supportive places which will provide time to talk and a place to be heard. People affected by cancer can be supported by people in similar situations and by professional staff. You will be able to find assistance with finances, emotional changes, and managing physical changes. Families and friends are also welcome and will find support. These groups are non-clinical – you have your healthcare team for that support.
What you will see: You will see lots of use of the word ‘hub’! Basically, a hub is a gathering point where you can connect with people and join a range of activities (should you wish). It can be a Cancer Café, or a Cuppa Companions Group, a weekly craft group or a whole building and organisation like Wadebridge Concern - The John Betjemen Centre. Whatever it looks like, you will always be welcome. There will be no pressure on you to join anything or even disclose anything until you feel it is right for you. At all these hubs, you will find someone to talk to about the impact cancer is having on your life.
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Cancer Awareness Training
Our Mission: We will be running Cancer Awareness courses together with Macmillan. These courses will empower anyone who might be in a position to deliver cancer support, such as community group staff and volunteers, health and social care professionals, and small community businesses.
We will provide up-to-date information on the path from first contact with the GP to diagnosis through treatment and beyond. Importantly, we will tell you about the typical financial, physical, and emotional impact of cancer and the support that is available in Cornwall and nationally.
What you will see: Our courses will run online every 2 months and are specifically designed to enable those who want to help. They are funded by Macmillan, so are free to you. Our aim is to help you feel comfortable and confident to have a conversation with someone affected by cancer. You can find course details on Cornwall Link, on our Age UK Cornwall Facebook page, and we can also send out personal invites to local organisations.
- Reaching to all Cornwall Communities
Our Mission: We want to be available for everyone in the county, no matter where you live. Our county is large and spread out but we do not accept that this should lead to poorer service. We intend to increase access to information on cancer support for all Cornwall residents from Bude and Torpoint in the east to the Isles of Scilly in the West.
What you will see: We will be tirelessly working with community groups all around the county to explore how cancer support can be included in their current work. We will ensure support is made available where people already gather and available in a way that fits your needs
- Working in Partnership with Macmillan
Our Mission: We ensure that we make the most of our partnership with Macmillan as this means that we are reaping all the benefits of teamwork and can build upon their established services in Cornwall and nationally. There are two accessible support centres locally with teams of professionals available to listen and advise:
- The Cove in Truro (https://www.royalcornwall.nhs.uk/services/cancer-services/the-cove/)
- Derriford’s Mustard Tree in Plymouth (https://www.plymouthhospitals.nhs.uk/mustard-tree)
Macmillan has a comprehensive website (https://www.macmillan.org.uk/) and a Support Line that can guide you to a wealth of information. They can connect you to people in similar situations via their online forums and Phone Buddies.
What you will see: Firstly, thanks to Macmillan the online information is always kept accurate and up to date. Secondly, the Cove in Truro can provide you with the most up-to-date list of Cancer Support Groups across Cornwall and thirdly, a wealth of further information is made available to all interested community groups.
- Making support accessible to all
Our Mission: We will tackle accessibility challenges! We plan to ensure that no one in Cornwall misses out because they don’t know what is available or because they struggle to access the available support. We are running partner projects to include many people who could easily face problems integrating.
- People who are not digitally connected
- LGBTQ+ communities
- The homeless
- Newly arrived refugees and our migrant workers
What you will see: We will contact current and future inclusion projects and ensure that all staff feel comfortable having conversations with people affected by cancer. These groups might receive an invitation to the online training or might be contacted via phone calls or emails providing them with the most relevant advice and information.
We will also be proactive and be present at events that people already attend such as for example Pride events, Bike Nights, and lunch clubs.
We will actively track the equality and diversity of people using our training. This will enable us to increase the variety of gatherings we attend. We will particularly look out for those people that might have trouble attending events because they live in isolated areas, do not go out much because of their economic or health situation, or are currently dealing with life priorities that might overshadow looking after their own wellbeing.
- Keeping Cornwall Informed:
Our Mission: There’s a lot going on in cancer support. Our aim is to keep you up to date with activities relevant to cancer. Cornwall Link will be the main source of information about cancer support. Please have a look at our weekly news feed, activities, and contacts to get the most out of what we offer.
What you will see: Our news feed changes weekly and will let you know what’s happening in your area and tell you about various awareness weeks. These might be Men’s health, ovarian cancer, Learning Disability Awareness and many more. You will also find local initiatives such as fundraising events where local charities work hard to support families with grants and equipment.
The Activities tab will show you specific events such as online meetings for specific cancer support, or day events such as a wellbeing fayres. You might also find information on longer running groups like yoga or dance courses, and cancer support groups in Cornwall and nationally.
- Spending your money wisely:
Our Mission: We have a duty to use every penny of our funding wisely. We are very grateful to say that Macmillan funds our valuable work and are aware that this is only possible because of Macmillan’s hard working and creative volunteers. These are just some examples of the variety in which funds are being raised to combat cancer:
- Head-shaves
- Mighty Hikes
- World’s biggest coffee mornings
- Legacies and collections from bereaved families
- The generosity of the public via street collections & direct debits
- Sponsoring family and friends in their crazy fundraising endeavours
What you will see: We provide easy-to-read quarterly reports with plenty of photos and first-hand experiences showing what we did with our funding and the difference it has made to local people in Cornwall.
Let’s join together
We want to make every contact count and our Macmillan Community Navigators, together with our partner organisations, will be there to help support YOU to build compassionate and caring communities.
Newsfeed Sept 2022
Following news of the death of Her Majesty Queen Elizabeth 2nd, I have been looking at her connection with cancer-related charities:
The Queen had been the Patron of the Imperial Cancer Research Fund since 1953 and Patron of Cancer Research UK following the merger in 2002 with Cancer Research Campaign.
She was also a patron of the Canadian Cancer Society and the Cancer Society of New Zealand.
Professor Sir Leszek Borysiewicz, Chair of Cancer Research UK says:
As our Patron, she kindly supported us over the years, opening our laboratories and institutes which are an integral part of the charity’s pioneering work in the prevention, diagnosis and treatment of cancer.
“During her remarkable reign, the Queen generously supported many charities, shining a light on the work they do and making an enormous difference to millions of people up and down the country. She set an example for all of us – and leaves a lasting legacy for which we are hugely grateful.”
Information about the Queen's health is scarce: however, The Guardian tells us:
‘The Queen, unlike her father – a heavy smoker who died of lung cancer at the age of 56 – has enjoyed robust health for much of her life, continuing to ride horses into her 96th year, even when against doctors’ advice. While fond of a gin and Dubonnet, her drinking has been moderate. Prince Philip quit his heavy smoking habit under her orders on their wedding day, and episodes of illness over her long life have been no more numerous or serious than could be expected.'
The late Queen sounds like someone very aware of a lifestyle which can lower cancer risks. I’m not sure of the success rate of giving people ‘orders’ to change habits, but there is plenty of support for anyone in Cornwall who wants to stop smoking, change their alcohol intake, increase their physical activity and maintain a healthy weight: https://www.healthycornwall.org.uk/
Or ask your GP surgery for a referral to the Social Prescriber.
Changing lifestyle habits is not easy:
You may have other pressures in your life – so right now may not be the time to change a habit that you consider is helping to reduce your stress.
Being sensitive to this, Age UK Cornwall and IOS have produced an information sheet for people from LGBTQ+ communities wanting to lower their cancer risk: https://www.ageuk.org.uk/cornwall/about-us/news-and-campaigns/articles/2022/cancer--lgbtq--information--advice-sheet/
Managing finances is a stress: Cornwall Link is adding to its pages on the Cost of Living. Check back regularly using this search term and Cornwall (not your postcode as some things may be online or County Wide). This includes information on the Cost of Living and Cancer: benefits and grants for people living with cancer and their families.
Soon Cornwall Link will also be launching a campaign that supports people who might be affected by the Cost of Living, the aim is to launch on the 7th October 2022...watch this space
You can also try this page from Citizen’s Advice .
Making a change can be more successful if you have support. This can come from a paying group of people all wanting the same change – such as a slimming group, or can be an activity such as a football team or couch to 5K running groups, or any group of people who respect your wishes and do not pressurise you to ‘have just one drink’ ‘one’s not going to hurt’…….
Facebook and community notice boards are the places to look for local groups in your area or have a look on Cornwall Link: The best way to find things near you is to start by popping in your postcode to the search and see what comes up.
Family History, Genetics and Cancer Risk
There is a chance that we will develop cancer because of our genetics. This article from Macmillan makes it clear that even if we inherit genes which make us more susceptible to cancer, we can still reduce the risk: https://www.macmillan.org.uk/cancer-information-and-support/worried-about-cancer/causes-and-risk-factors/family-history-genetics-and-cancer-risk
If you are worried and want to talk to someone, Macmillan’s Support line is open every day 8 am-8 pm: 0808 808 0000
Cancer Research UK has information on reducing cancer risks, inherited genes and older age and cancer.
September is Childhood cancer awareness month
The incidence of cancer in young people is low (1%) of all diagnoses. This is probably because children have had less opportunity to be exposed to the typical health and environmental risks that raise the likelihood of cancer. The Teenage Cancer Trust has some wise words for young people diagnosed, that it is not their fault and sometimes we never know the cause. More tough questions are discussed on Young Lives Vs Cancer: We are the charity that helps children and young people (0-25) and their families find the strength to face whatever cancer throws at them.
Bereavement Support
Let’s go back to where we started, with the death of Queen Elizabeth II. Whether or not you feel any connection with her Majesty, her death and the massive media coverage may bring back emotions of your own losses. Cornwall Hospice Care has these beautiful words:
‘In this period of national mourning, we would like to assure you that our priority is still with our patients and their families, carers and friends. We will continue with our work, including our bereavement support services, whilst reflecting on the enormous commitment given to the hospice movement by many members of our Royal Family’.
Thanks for reading and we will be back soon.
Mary Austin, Macmillan Cancer Support Lead, Age UK Cornwall
Newsfeed Sept 9th 2022
September is blood cancer month!
Macmillan says: Blood cancers happen when the blood cells do not develop properly.
The most common blood cancers are:
- Leukaemia (sometimes spelt Leukemia)
- lymphoma
- myeloma
The Macmillan webpages explain each type of cancer and the possible treatments, and further links if you want more detail.
The lymphoma pages include links to booklets for people diagnosed with Hodgkin's and non-Hodgkin lymphoma
Support for people diagnosed and carers:
Blood Cancer UK is a website for everyone affected by blood cancer, whether it’s leukaemia, lymphoma, myeloma, MDS or MPN, and whether you've been diagnosed yourself or a loved one has. There is information and support if you're worried about symptoms, newly diagnosed, in the middle of treatment or adjusting to life afterwards. There is a special section for young people who have been diagnosed. There is a section on practical and emotional support for family and friends.
There are stories from people diagnosed and their families: ‘seeking support as a queer person’; how to tell your family and friends; how to be a good friend to someone with blood cancer; remaining positive during treatment; the emotional impact; coping with mental and physical fatigue; managing work – including running a business; regaining control; how to support someone with a poor prognosis.
Their Support Services Team can be phoned on 0808 2080 888
ACLT is a leading blood cancer/disorder charity dedicated to raising awareness of the severe shortage of donors on United Kingdom Stem Cell, Blood and Organ donor registers.
‘Our work is driven by a belief that no one should die waiting for a donor to become available.
Through our work, we improve the odds of finding matches by registering potential donors en masse from all ethnicities, with a focus on donors from the African and Caribbean communities. This is due to an extreme shortage of potential African and Caribbean donors.
We also provide support and advice to patients and their families throughout treatment, from diagnosis to recovery and sadly (in some cases), while supporting the patient and family during ‘end of life’: where treatments have not been successful.’
MyelomaUK offers a range of support to patients and their families: support groups (Cornwall Support Group held at The Cove, Truro); an online discussion forum; speak to a specialist online, by email or by phone ( 0800 980 3332). Includes peer-to-peer support and advice and support for carers. Digital events for patients and families are available to join live or you can watch the recordings as a YouTube video.
Lymphoma Action says lymphoma is the 5th most common cancer in the UK and can affect adults and children. They offer a number of downloads to print off; a magazine, podcasts, a private Facebook support group; information in a number of formats ( easy read/video/larger print and phone translation, and animation films designed for children.
Leukaemia Care: you can talk to a nurse or support staff on freephone 08088 010 444. Leukaemia Care has its own podcast which you can listen to on iTunes, Spotify and other podcast providers: you are invited to feature on future episodes!
You can sign up for the newsletter or for Buddy Calls, watch their webinars and follow them on their Facebook.
Wow! Short of popping round to your house, they have so many ways to get connected to experts and other people with similar experiences.
Leukaemia UK needs people to start ‘parroting on’ about the early signs of leukaemia so everyone is able to #SpotLeukaemia sooner. Leukaemia can be hard to spot because the signs and symptoms are common to other unrelated illnesses. Knowing what to look out for could help you make the decision to visit your GP sooner for a blood test. Less than 1% of the population can list the four most common symptoms: Henry the parrot ‘raps’ them…..
- Fatigue
- Bruising
- Bleeding
- Repeated infections
Parrot – parroting on….get it? Yes, well, moving swiftly on…..
Watch and wait is a phrase you might hear people use to describe where they are with their blood cancer. Sometimes called active surveillance or active monitoring or watchful waiting, it means having regular tests to check for signs that treatment needs to begin. Blood Cancer UK says, 'Watch and Wait' is usually only an option for people with few or no worrying symptoms, whose quality of life and prognosis won’t be affected by delaying treatment. It’s only recommended for people with blood cancers that are stable and slow-growing – this is about 13% of all people diagnosed. For people who are anxious about this stage, signpost them to the Blood Cancer UK Watch and Wait pages where you will find support on what questions to ask your healthcare team about this stage and how to manage any anxiety it causes.
Life in Remission
One particularly interesting and enlightening read on the Blood Cancer UK website is a story from Natalia titled ‘No one talks about how hard it is when treatment ends'. For those of us who are in contact with people in remission, it is worth a read to have some insight into the difficulties of adjusting to a different life once treatment ends.
‘It feels like I was expected to easily transition back to a normal life when my treatment finished. But after such a life-changing experience, you can’t always fit back into your ‘normal’, or go back to being the same person as before.’
‘So much of my identity was tied up with the blood cancer and it felt like cancer hadn’t ended when the treatment finished.’
Natalie found her release in writing a blog where she could write about her experiences and feelings when it was hard to talk about them. She continued activities that ‘brought me into the present moment, that occupied her concentration: a way to get away from comparing her life before cancer and now. If it’s not a cliché by now - a way to find a new normal.
That's it for this week - see you next week
Newsfeed 2nd Sept 2022
September is a busy month for Cancer Awareness: It is blood cancer awareness month; childhood cancer awareness; urological cancer; gynaecological cancer, but we start with thyroid cancer awareness.
Thyroid Cancer Awareness
Macmillan says: The thyroid is a small gland in the front of your neck, just below your voicebox (larynx). The thyroid gland is part of the endocrine system. This system makes hormones that help control the way your body functions.
Thyroid cancer is not common. Around 3,500 people in the UK are diagnosed with thyroid cancer each year. Thyroid cancer can happen at any age. It is more common in women. Cancer Research adds that although thyroid lumps are not uncommon, only about 5% turn out to be cancer, but it is important to get any lump checked
The most common symptom of thyroid cancer is a painless lump in the neck. Other symptoms include:
- a hoarse voice that has no obvious cause and does not go away after a few weeks
- difficulty swallowing – caused by a thyroid tumour pressing on the gullet (oesophagus)
- difficulty breathing – caused by a thyroid tumour pressing on the windpipe (trachea)
- pain in the front of the neck.
You should see your doctor as soon as possible if you notice any of these symptoms.
Macmillan’s information describes several different types of thyroid cancer: papillary being the most common; follicular; medullary, anaplastic, and thyroid lymphoma – all of which have different early symptoms.
Cancer Research UK has further information on the function of the thyroid, including some YouTube clips and it goes into a bit more depth about how the early signs and symptoms might feel.
As non-clinical staff, we often have the opportunity to hear or notice people’s concerns about changes in their physical appearance or health (or of someone they care for). We are not diagnosing, but we can tell our clients the facts as we have read from Macmillan and CRUK and signpost them to this publicly available information. For example, the fact that it is advised that all lumps, whether they are painful or not, are seen by the GP; that symptoms of hoarse voice, sore throat or swallowing difficulties that are still present after three weeks should be seen by a GP even if otherwise the person feels well.
We don’t want to be alarming people – neither do we want to give them false reassurance: however, we know that the earlier a cancer is noticed, the more likely it can be treated successfully.
If you are supporting someone who has a diagnosis of thyroid cancer, you may find the Cancer Research and Macmillan information helpful as background to have a good conversation with the person or their carer.
Getting the most from GP appointments
Cancer Research has a handy checklist for Getting the most from your GP appointment. It includes a YouTube clip on how to get the best from an online or phone appointment; what to ask and what to ask if the GP doesn't feel further tests or a referral are needed.
This information may be useful to the person or to their carer/family who accompanies them. Although this advice is found under the heading of thyroid cancer – it is relevant to most GP appointments, particularly where the person is worried about cancer – possibly of an earlier cancer returning, or where there is a family history of cancer.
Macmillan Support Line:
As always, if the person or their family/carer has a worry, they can phone the Macmillan Support Line which will listen and find the most relevant support for the person.
Online (includes online chat and email) https://www.macmillan.org.uk/cancer-information-and-support/worried-about-cancer
By Phone: 0808 808 0000 Every day 8am-8pm
Other support for patients and families/carers
Macmillan has an online thyroid cancer forum
Butterfly Thyroid Cancer Trust: Helpline 07399564463 or email amy@butterfly.org.uk. The site offers peer support to members including a buddy through the stages of surgery, Radioiodine treatment and follow-up.
This week is also: Adult Learners Week – part of Learn to Have a Go month
Several of Cornwall Council’s adult learning tutors have attended our online Cancer Awareness sessions, so they have some insight into the impact of cancer on a person’s physical, emotional and financial abilities.
It can be helpful for people affected by cancer to be with people who have similar experiences: Conversely, learning might be the opportunity to put cancer worries on hold and have some time for normality.
Here are a few ideas:
Dance Centred have two Move Together courses ready to book.
Dance sessions for women affected by Cancer with a focus on the body, movement and creativity
”Joyful and energising - I feel so much better!”
Open to women at any stage of their cancer experience – whether you have recently been diagnosed, are mid or post-treatment, or are caring for someone else with cancer.
We understand that having cancer or caring for a loved one with cancer can be very challenging and the focus can become the diagnosis, illness and treatment. Move Together sessions offer the opportunity to connect with others through dance, improve physical and mental well-being and feel the joy of moving together.
These gentle, creative, and playful movement sessions are running in two locations;
NEWQUAY SESSIONS STARTING
19TH SEPTEMBER
Where: The Heron Room, Heron Tennis Centre, Newquay, TR7 2LZ
When: Mondays 10.30 am – 12.30 pm
Starts: 19th September for 10 weeks until 5th December (with a 2-week half-term break)
Cost: This is FREE!
BUDE SESSIONS STARTING
27TH SEPTEMBER
Where: Room 2/3 Parkhouse Centre Bude
When: Tuesdays 10.30 am – 12.30 pm
Starts: 27th September - 28th November (with a 2-week half-term break)
Cost: This is FREE!
Follow this link and click on the ‘Book Now' button or
Ring Sam on 07939 167526
Let's it for this week, stay safe and enjoy the weekend.
Newsfeed Aug 26th 2022
Peer Support
Macmillan says: For people living with something as life-changing as cancer, speaking to others in the same position can be a vital way to help them deal with their emotions.
In a review of studies of Cancer Peer Support Sessions (2004) the authors stated that peer support for cancer patients has been shown to improve coping skills; give reassurance and a sense of normalcy; a reduction in isolation; information sharing; a better understanding of the experience and of the future; and greater confidence in talking to physicians.
A 2006 study of Australian cancer support groups gathered feedback from members, who found the benefits to be: Comparing emotional and physical reactions; listening to other people’s ‘tough days’ and learning from how they managed – encouraging a spirit of hope, optimism and tolerance. Members said they valued their families’ support however, the peer groups gave them an empathy that they felt could only come from someone in a similar situation.
Interestingly, this study found no significant benefits of a group is professionally led compared to groups led by peers, ‘suggesting that it is not the professional background of the leader which is of importance, but whether the group provides a supportive environment, mutuality, and a sense of belonging, and whether it meets the perceived needs of those attending.’
(It needs to be borne in mind that the studies only received feedback from people attending, not from people who dropped out, or chose not to attend and no long-term effects were explored. However, the evidence does show some positive outcomes)
Maggies describes the benefits of a support group: ‘Groups offer a safe space to express emotions you might not want to share with your friends and family. You might learn from those a little way ahead of you in their journey and develop your own strategies for coping.’
Online Peer Support
Macmillan Cancer Support enables peer support via the online community.
Macmillan, list the advantages of online support: accessible 24 hours a day; making social connections, so reducing isolation; improving people’s knowledge and awareness of cancer support; can be used anonymously, in confidence and from the comfort of users’ own homes. Cancer patients who are confined to their homes or struggle to discuss issues face-to-face find this particularly appealing. Online communities and networks provide emotional support from others who have similar experiences and can understand this, in turn, can lead to reduced anxiety, stress and depression.
The Online Community understands what it's like to have cancer. We are an online cancer forum with 90,000 members, and they have all been there. Support is available 24 hours a day, in a safe environment.
Members can post their questions to people affected by cancer and reply to other posts or ask experts. Members can journal their experiences to share with others via the blog.
Communities are listed by cancer types or by shared experience.
Shared experiences include:
- Bereaved families and friends forum
- Carers only
- Diagnosed at a young age
- LGBTQ+
- A patients-only group for living with incurable cancer and a separate one just for family and friends
- Living with cancer outside the UK
Blogs
Can be a dialogue with other members started by an outpouring of emotions such as their feelings about having to wear a wig - leading to swapping tips on hair and makeup during and after treatment; a poem; a diary of a day with supportive good wishes from other users. It is clear from the comments that people appreciate the support of others in similar situations.
Cornwall Peer Support Groups
Lockdown saw many of the peer support groups move to online support using zoom and Facebook to keep in touch.
The Cove Macmillan Support Centre keep an up-to-date list of all known cancer support groups across Cornwall and online groups which can be accessed by Cornwall residents.
Cornwall Link has listings for face-to-face and online groups – search using locality or the key words cancer support.
See you next week - have a lovely weekend one and all.
Mary
Newsfeed Friday, Aug 19th
Healthy Eating
Cancer Research UK says ‘Healthier diets could prevent around 1 in 20 cancers.’
This is partly from the effect of the diet itself, but mostly by helping you keep a healthy weight or lose weight
When it comes to cancer, there are no guarantees. Overall diet has a bigger impact on cancer risk than individual foods. But some specific foods can also affect cancer risk.
Three quick wins by cutting back on….
- Processed and red meat: Eating a lot of processed meat or red meat can increase the risk of bowel cancer. Processed meat includes ham, bacon, salami, and sausages. It is the chemicals used in their processing that cause harm. Red meat includes all fresh, minced, and frozen beef, pork and lamb.
Fresh white meat, such as chicken and fish, is not linked with an increased risk of cancer.
- Alcohol: Alcohol causes 7 types of cancer. So, whatever your drinking habits, cutting down reduces the risk. https://www.cancerresearchuk.org/about-cancer/causes-of-cancer/alcohol-and-cancer/does-alcohol-cause-cancer
- High-calorie foods and sugary drinks: Foods high in fat, sugar or calories can make it harder to keep a healthy weight.
Does eating burnt toast cause cancer?
Cancer Research UK https://www.cancerresearchuk.org/about-cancer/causes-of-cancer/diet-and-cancer/food-controversies has some info on food myths including the fairytale of superfoods ( and no, eating burnt toast does not cause cancer, nor do tinned tomatoes or diet fizzy drinks).
To prevent many conditions, not just cancer, a ‘balanced’ diet is the one to follow. Sadly, this does not mean a cake in each hand. It means a balance of fruit, veg, whole grains for fibre, and protein.
Do I have to turn vegan? You don’t have to…..There are benefits to a vegan lifestyle in terms of animal welfare and climate sustainability but it can be just as full of fat and sugar as any other diet. Good advice is to give more thought to what you eat.
Small and gradual swaps make it easier to change. ‘A healthy diet isn’t all about following rules. One way to think about it is with ‘everyday foods’ (all the nutritious stuff) and ‘occasional foods’ ( the high fat & sugar treats). This isn’t about strict rules or never having any less healthy foods, it’s about getting a good balance'.
The BDA ( Association of UK Dieticians) have healthy eating advice for people of African and Caribbean heritage: https://www.bda.uk.com/resource/healthy-eating-for-african-and-caribbean-individuals.html
‘Eating well doesn’t mean you have to give up on your cultural or favourite foods. It is about enjoying these in moderation and as part of a healthy, balanced diet.’
Cancer Equality http://cancerequality.co.uk/cancer-facts/reducing-your-risk-of-cancer/ has similar information to other sites and uses photographs which relate to people from different ethnicities.
In 1999, experts in the field of cancer care, information and support came together to address the needs of Black and Minority Ethnic (BME) communities and founded Cancer Equality. Their work includes the production of information in a range of languages and formats, delivery of training, and publishing a directory of cancer resources, conferences and reports. The organisation’s work is directed to addressing inequalities in cancer care, improving access to information, support and services and delivery of culturally appropriate cancer services.
Let’s now look at support for healthy eating if you are diagnosed and are having treatment:
The Royal Marsden https://www.royalmarsden.nhs.uk/your-care/living-and-beyond-cancer/eating-well in partnership with Macmillan has dedicated units for many cancer types and for people during and after treatment.
Their colour booklet Eating Well When you have Cancer can be downloaded or a paper copy ordered from their Patient Liaison and Advice Service (PALS) at 0800 783 7176.
Topics include eating when you have nausea, sore throat, dry mouth, changes in taste changes in bowel habits and foods to avoid.
Macmillan’s booklet Eating Problems and Cancer explores some common eating problems and why they might happen. It also suggests some practical ways to manage them.
You can download a copy here: https://www.macmillan.org.uk/cancer-information-and-support/stories-and-media/booklets/eating-problems-and-cancer
Or order a physical copy from Be Macmillan ( https://be.macmillan.org.uk/be/p-25464-eating-problems-and-cancer.aspx) with ID: MAC13613
Cancer Research UK has a page of information on coping emotionally with a change in your diet, including managing well-meaning family and friends' efforts to encourage you to eat more when eating might be painful and cause anxiety. https://www.cancerresearchuk.org/about-cancer/coping/physically/diet-problems/your-feelings-about-diet-problems
On a lighter note, you might enjoy reading Dave and Biants’s diplomatic approach to Dave’s wife’s efforts with ‘the fennel tea and tasteless veg’: https://loros.co.uk/assets/downloads/DAVE---FULL-VERSION.pdf
Alternate diets
Being affected by cancer may be the spur to research alternate therapies. Cancer Research UK has information regarding diets, supplements and other remedies which claim to cure cancer. If considering a ketogenic diet or Gerson Therapy, do your research first.
The Cove Macmillan Support Centre (on the site of the Royal Cornwall Hospital Truro) has a dietician as part of the cancer support team: Our phone lines remain open from 9 am to 5.00 pm on weekdays on 01872 256363 or contact us via email at thecove@nhs.net for support and information relating to your cancer diagnosis, treatment and recovery.
Newsfeed 12th Aug 2022
Cancer Support for the LGBTQ+ community
One in two people will be diagnosed with cancer in their lifetime: a scary thought, but made less so when you consider that nearly 40% of cancers are preventable or can be treated early with good outcomes.
Knowing how to lower your risk is one thing – changing your lifestyle is not always easy or straightforward. There may be other priorities in life, so cancer advice may not be timely. Some lifestyle choices are used to manage stress in spite of knowing that they may be impacting other aspects of health, so cancer advice may not be realistic.
Coming to terms with sexuality or gender; finding partners, friends and allies and anxiety over family relationships will take priority over worrying about something that may not happen. Information needs to be sensitive and recognisable as relevant for people to take the time to read it and use it.
With this in mind, Age UK Cornwall and IOS and Macmillan, with support from Not Alone Plymouth have compiled some information to guide people from the LGBTQ+ communities and their friends and families through the support for Cancer.
Please share widely: LGBTQ+ Information Advice Sheet
A new booklet from Ovacome:
Ovacome, the national charity providing support to anyone affected by ovarian cancer, has produced a new booklet on rare ovarian cancers. Link to download here or follow the link to order a paper copy.
Nine out of 10 malignant (cancerous) ovarian tumours develop from the fallopian tubes near the ovaries or from the epithelial cells that cover the surface of the ovaries. These are the most common types of ovarian cancer affecting about 6000 people each year in the UK. Their behaviour is well understood, and there are reliable guidelines about treatment and results.
Each year hundreds of people develop one of the rarer ovarian tumours - this booklet explains the various types of ovarian cancer and the possible treatments. There are links to further specialist information.
Support Groups Section (We have lots to share this week...)
A new cancer café started in Wadebridge Friday 12th August 10.30-12.30 at the John Betjeman Centre Southern Way, Wadebridge, Cornwall, PL27 7BX
Then every 2nd and 4th Friday of the month.
Hosted by Concern Wadebridge and run in partnership with Age UK Cornwall & IoS, Macmillan and the North Cornwall Coast PCN. Anyone affected by cancer is welcome to drop in. No need to book. Nothing to pay. Just come along to get support from other people in a similar situation.
Ovacome runs an online Rare Ovarian Support Group every second Thursday of the month 2-4pm. Follow the link for details on joining instructions.
HOPE Courses: Hope for the Community CIC organise online HOPE courses for carers; people living with cancer and people with other long-term conditions. They get booked up quickly (Macmillan programme for cancer already fully booked until new ones can be organised - November at the earliest). Jen at Hope for the Community suggests checking into the website regularly for new courses: these will also be advertised on Cornwall Link.
Upcoming Events:
Dance Centred: Move Together – Dance for women who are affected by cancer. Parkhouse Centre, Bude. 8-week course. Tuesdays 10.30-12.30. Starting on the 27th Sept with a one-week break for half term. Booking arrangements to follow.
Fundraising for Cancer Support:
The sun is out, the breeze is blowing off the sea – be sensible and take care, but please get out there and get involved…
A big thank you to Launceston Toolstation for their car boot sale at Pendeen on Sunday – well-done folks.
Macmillan Mighty Hikes: A big shout of encouragement to the Bude Macmillan Fundraisers doing the Cornwall half marathon Mighty Hike from Padstow to Rowan Cove on 3rd Sept. Two of the team are cancer survivors, and the course is ‘hilly’ – they don’t make it easy for themselves!!
Funding page for those of us who will cheer from the beach/garden with ice cream: https://macmillan-org.enthuse.com/pf/bude-backpackers-d5838-3356d
Training for a run/hike/swim can give you the motivation to get out there no matter what the weather. You may prefer to support by eating a cream tea or hooking a duck.
Whatever your fitness, skills or pleasures Cornwall Hospice has a wealth of events throughout the year and throughout the county on their events calendar.
Macmillan World’s Biggest Coffee Morning.
This week is National Afternoon Tea Week. In a tenuous link – here is a gentle reminder to start organising your World’s Biggest Coffee Morning for 2022. The date is Friday 30th Sept, but this can be flexible to suit you and your gathering. Sign up here to receive your free fundraising kit – you can opt for the ‘lighter plastic’ version. Plenty of tips on how to host, whatever the size or shape of your event. Here at Age UK Cornwall & IoS HQ in Truro, this will be our third event. The cake-baking skills and generosity of the staff and local bakers and residents will be appreciated once again on the morning of Thursday, Sept 29th in the Training Room at Boscawen House.
Can’t wait until Sept for your 'Jam On First' experience? If you are in the Newquay area: The Age UK Cornwall & IoS Community Hub team at Govenek are hosting An Afternoon Tea in aid of Breast Cancer Now on Tuesday 16th August @ Govenek 1 pm – 3 pm and would like your support. Crantock Street, TR7 1JR Newquay. There’s plenty of on-street parking or nearby car parks.
Govenek Community Hub would love as many people to attend as possible but if you are unable you can donate to the JustGiving page by clicking this link: Govenek Just Giving - Breast Cancer Now
That's all from Mary and me - catch you next week
Our Weekly Blog is composed by Mary Austin - if you would like to share information or topics relating to cancer, please drop her an email at Mary.Austin@ageukcornwall.org.uk or contact lee.davies@ageukcornwall.org.uk to find out more.
Newsfeed 29th July
Focus this week - the role of nature in cancer support
Did you Know?
This week is National Marine Week and Love Parks Week
Is there a benefit to people affected by cancer to spend time in nature?
Mind says that spending time in green space or bringing nature into your everyday life can benefit both your mental and physical wellbeing. For example, it can:
• help you feel more relaxed by reducing feelings of stress and anger
• help you be more active
• help you meet other people, reduce isolation and connect you to your community
• help you be in natural light
“Nurturing something else into life has really helped my wellbeing.
Gently caring for something helped me learn to care for myself.”
This could be tending to a flower or veg bed; beach cleaning or urban litter picking; clearing footpaths; or walking your own or someone else's dog. The list goes on and on.
WWF and the Mental Health Foundation have produced a downloadable guide Thriving with Nature. After a general introduction echoing Mind’s advice on the link between nature and good mental health, it follows the seasons suggesting activities to motivate you to get outside.
Newsfeed 22nd July 2022
Cost of Living and Cancer
Living with cancer will impact finances. People are likely to have an income reduction due to having to drop or lose working hours. In addition, family or friends may have to lose or drop hours to be a carer. Expenditure will probably rise due to needing more heating, increased water use, transport to appointments, new clothing, wigs and so on.
Macmillan research says that 83% of people are, on average, £570 a month worse off because of their diagnosis.
People will not have expected or planned for this situation. They may be forced to use their savings, sell their property or possessions, or may improvise by borrowing from relatives, cutting down or cutting out, and maybe getting into debt.
Timely advice may help:
Macmillan has produced a webpage summarising the support available from themselves and from energy and water companies: click here
- Macmillan financial guidance team - available by phone or online
- Online benefits calculator
- Advice if you are struggling to pay your bills
- Advice on managing PIP delays
- Emotional support by phone and online
- Macmillan Grants
Benefits: The benefits system is complicated and ever-changing but financial help may be available through a range of welfare benefit payments offered by the Department of Work and Pensions or the local authority. Eligibility criteria differ from benefit to benefit but if you have to stop work, are on a reduced income or are self-employed, there may be benefits that you can claim. Special rules can apply to terminal illnesses. So, it is worth having a chat with a benefits adviser or using an online calculator to check entitlement.
Macmillan has an online benefits calculator that can be used by the person with the diagnosis or their family.
If you are being treated at Royal Cornwall Hospital Treliske, your medical team may refer you to the Citizens Advice Cornwall team based at The Cove Cancer Centre. For patients being treated at Derriford, Barnstaple or the RD&E at Exeter please ask your medical team for the relevant benefits and financial support contact.
If you are aged 50+, the Age UK Cornwall and IOS team can help you with your Attendance Allowance forms: call the Helpline on 01872 266 383.
You can also find financial advice on the main Age UK website: this includes managing money, managing debt and protecting yourself from scams.
Financial Guidance: For advice relating to money management, insurance, pensions, wills and other non-benefit-related matters, the Macmillan national helpline advisers can help. They can be contacted on 0808 808 0000.
For information about all aspects of finances (including Macmillan grants, benefits for people over pension age; help with mortgage and other financial commitments) you can order the booklet Help with the Cost of Cancer – available as a paper copy or an audiobook.
Macmillan Support Line: Call 0808 808 00 00 or visit their website
If you are Deaf or hard of hearing, you can call using NGT (Text Relay) on 18001 0808 808 00 00 or use the NGT Lite app.
Information is available in other formats and languages.
Social Prescribers, Coaches and Community Group facilitators – this information is available on the Cornwall link by searching all communities, Health condition - cancer.
Cornwall Council has a page summarising support for all Cornwall residents struggling with the cost of living. Visit these pages regularly to keep up with changes.
Support Group of the week:
Cornwall Brain Tumour Support (and there is one for Devon!)
I am grateful to Ellen for not only giving me this information but for setting up the group. Ellen describes herself as a ‘brain tumour warrior’: I would agree. After feeling herself adrift between diagnosis and her next scan in 12 months, she vowed that no one else should feel this way. She has set up a Facebook group and some real-life meetups to give much-needed human connection.
Devon BTS FB group:
https://www.facebook.com/groups/348079219217822
BTS main website:
https://www.braintumoursupport.co.uk/
Newsfeed July 15th 2022
Sun and cancer
The South West has one of the highest rates of skin cancer incidence in England https://www.statista.com/statistics/312902/skin-melanoma-cancer-cases-rate-england-region-gender
Cancer Research UK ( https://www.cancerresearchuk.org/about-cancer/causes-of-cancer/sun-uv-and-cancer/how-does-the-sun-and-uv-cause-cancer) says: In the UK almost 9 in 10 cases of melanoma, the most serious type of skin cancer, could be prevented by staying safe in the sun and avoiding sunbeds.
Our Newsfeed on May 6th 2022 was all about signs of melanomas and non-melanomas as well as how to lower your risks of skin damage on these sunny days.
To save you time and angst in scrolling down (I take your thanks) here is the all-important link to The British Skin Foundation’s guide to self-checking:
Checking includes
Melanomas – linked to moles: Any changes to your skin can be a concern, but in particular look out for growing size, changing shape, developing new colours, bleeding, pain, crusting, red around the edges or itching. About once a month, check your skin for moles or marks that are changing or new.
Non-melanomas: Non-melanoma skin cancers are more common than melanomas. They are not connected to moles and can be less serious as they are less likely to spread to other parts of the body.
https://www.britishskinfoundation.org.uk/what-is-skin-cancer
Buying and Using sunscreen
The NHS advises: https://www.nhs.uk/live-well/seasonal-health/sunscreen-and-sun-safety/
‘Most people do not apply enough sunscreen - Sunscreen should be applied to all exposed skin, including the face, neck and ears, and head if you have thinning or no hair, but a wide-brimmed hat is better….It's also recommended to reapply sunscreen every 2 hours, as the sun can dry it off your skin’
Be cautious of claims that sunscreen is ‘once a day' or ‘water resistant’ (note: not waterproof) as it can be rubbed off by sand/clothing/towels etc.
There should be an expiry date on your sun cream container, although this is not always easy to find or read. It might be embossed on the very end of a tube or printed on the bottom of the bottle.
If there is an hourglass symbol present, this means the product has 30 months to be used whether it has been opened or not.
(You may be interested in other symbols of beauty and health care products: https://www.glamourmagazine.co.uk/gallery/product-symbols-decoded)
Boots https://www.boots.com/soltan/top-tips say most sun creams have a ‘shelf life’ of two to three years if kept out of sunlight and high temperatures. So, if you tend to take your sun cream to the beach or leave it in the garden, you may have to buy another the following year.
Sunglasses
This advice from Cancer Research UK: ( https://www.cancerresearchuk.org/about-cancer/causes-of-cancer/sun-uv-and-cancer/sun-safety). Sunglasses can protect your eyes from UV rays. When choosing sunglasses look for one of the following:
- 'CE Mark' and British Standard
- UV 400 label and 100% UV protection is written on the label or sticker
- Protection at the side of the eye, for example, wraparound styles, sports glasses or bigger sunglasses
Sunshine and cancer treatment
Maggies ( https://www.maggies.org/cancer-support/managing-symptoms-and-side-effects/sun-skin-and-cancer-treatment/) says: If you’re having, or have had cancer treatment, you may be advised to avoid direct sunlight on the skin. This can feel disappointing when sunshine for many of us gives a lift in mood and helps the body make vitamin D.
Sometimes people can develop photosensitivity, which is when your skin becomes more sensitive to the sun’s ultraviolet rays. Treatments that can cause photosensitivity include chemotherapy, radiotherapy, certain antibiotics, non-steroidal anti-inflammatory drugs and some anti-sickness medications.
More details can be found in the article.
Macmillan has advice for people who have had targeted or immunotherapy drugs to protect themselves from the effects of the sun: https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/travel/taking-care-while-away
Support Groups:
Just in case you haven’t seen these offers on Cornwall Link….
Ovacome: the ovarian cancer charity has a number of online support groups:
The under 45’s group: for anyone who was diagnosed when under the age of 45, meets 5-7 pm on the first Wednesday of the month. The link will also take you to the Young Women’s Guide to Ovarian Cancer: it provides information on treatment, relationships, fertility and facing early menopause after ovarian cancer treatment in your fertile years.
Friday Tea and Chat: Our weekly Friday afternoon sessions provide an opportunity to speak to others living with ovarian cancer, whether to talk through anything that's on your mind, ask for advice, or just to have a nice chat!
You don't have to stay for the whole two hours; you're welcome to join us for as long as you like. If you don't feel ready to join in the conversation and just want to listen in, then just let us know when you sign up.
https://www.ovacome.org.uk/Event/friday-group
End of Life Matters: This group is for people whose needs change as their illness progresses. We aim to talk about emotional and practical issues in a supportive way as we approach the last part of our lives – however, we define that time. The group will share experiences of talking with family and friends about arrangements for future care, how we would like to live now, and how we want to approach the end of our lives.
The group aims to provide friendship and support and respects the views of people of faith and others. We meet from 12 to 1:30 pm on the third Tuesday of every month.
https://www.ovacome.org.uk/Event/end-of-life-matters
Other Ovacome online groups include Rare ovarian cancers support group; stoma group; family and friends group. The organisation also runs one-off events such as their self-massage workshop on 20th July. Read more here: https://www.ovacome.org.uk/Pages/Events/Category/come-to-our-events
Newsfeed 08/07/2022
At last…we have the sunshine!!!
Travelling with Cancer
Macmillan says: Travelling may help you feel more relaxed and positive if you are affected by cancer. If you are caring for someone with cancer, you may need a break from caring.
( https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/travel)
Here’s the boring, yet necessary, the topic of travel insurance.
Travel insurance protects you from the consequences of unexpected events, such as losing your luggage, cancelled travel plans and health issues.
If you already have travel insurance, check the small print to find out if you are covered if you have a diagnosis of cancer- or ring your insurer to check.
Macmillan has advice (https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/travel/buying-travel-insurance) for your FAQs and possibly some situations you hadn’t considered. It covers pre-existing diagnoses; what to look for when buying travel insurance; information an insurer may want to know.
You can also post your questions to the Travel Insurance online community: https://community.macmillan.org.uk/
Is your Health Insurance Card still valid? You may want to check how your insurance covers trips to Europe now. Visit Gov.UK advice pages on travelling abroad: https://www.gov.uk/foreign-travel-advice or Martin Lewis Money Saving website’s information on the change from the EHIC to the GHIC ( Global Health Insurance card) https://www.moneysavingexpert.com/travel/free-ehic-card/
Cancer Research UK ( CRUK) (https://www.cancerresearchuk.org/about-cancer/coping/practically/travelling-with-cancer/travel-insurance/getting-travel-insurance). Check both Macmillan and CRUK to ensure you get as much information as possible before choosing travel insurance.
CRUK includes useful information on travel with cancer no matter where you are going, including travelling with medicines; how cancer might affect your travel; when it might be advisable not to travel. https://www.cancerresearchuk.org/about-cancer/coping/practically/travelling-with-cancer
Are you hosting family or friends for their holiday?
CRUK has information on overseas visitors getting treatment while in the UK: https://www.cancerresearchuk.org/about-cancer/coping/practically/travelling-with-cancer
And on borrowing a wheelchair: https://www.cancerresearchuk.org/about-cancer/coping/practically/getting-a-wheelchair
Having a Staycation? (apparently, this means a holiday in the UK – not staying at home and having day trips…) You may want to know how to temporarily register with a GP in your holidaying destination in the UK: https://www.nhs.uk/common-health-questions/nhs-services-and-treatments/how-do-i-register-as-a-temporary-resident-with-a-gp/
Organisations for specific cancers may give more detailed information:
The Roy Castle Lung Cancer Foundation has a downloadable booklet covering travelling with lung cancer: https://roycastle.org/about-lung-cancer/living-with-lung-cancer/travelling-with-lung-cancer/
Breast Cancer Now has advice if travelling abroad with breast cancer: https://breastcancernow.org/information-support/facing-breast-cancer/living-beyond-breast-cancer/life-after-breast-cancer-treatment/travelling-abroad-breast-cancer
Prostate Cancer UK: travelling and prostate cancer: https://prostatecanceruk.org/prostate-information/living-with-prostate-cancer/travelling-with-prostate-cancer
The Brain Tumor Charity: Particularly useful are the top tips from our community at the bottom of the page: https://www.thebraintumourcharity.org/living-with-a-brain-tumour/maintaining-your-independence/travelling-abroad/
Top Tip from Maggies: https://www.maggies.org/cancer-support/managing-practically/travel-and-cancer/ Communication difficulties: If language is a problem, it can help to have translated phrases handy that you may need about your cancer or treatment.
To help you communicate, you could write out cards to discreetly ask for smaller meals or to say that you need to use the toilet urgently.
Support Group of the Week:
Live in or around Bude-Stratton (EX23)? Anyone affected by cancer is welcome to drop into the Cancer Café (poster below).
We also have a Facebook page: https://www.facebook.com/budestrattoncancersupport/
Newsfeed July 1st
July is Sarcoma Awareness month
Sarcoma UK says: ( https://sarcoma.org.uk/)
Sarcomas are uncommon cancers that can affect any part of the body, on the inside or outside but are most commonly found in the lower limbs, upper limbs and trunk. They can affect all age groups.
Signs and symptoms
- A lump which is growing, changing, or bigger than a golf ball
- Swelling, tenderness or pain in or around the bone which may come and go and may be worse at night
- Stomach pain, feeling sick, loss of appetite or feeling full after eating only a small amount of food
- Blood in either your poo or vomit
It is important to remember most lumps and pains are not sarcomas, and this list doesn’t cover everything. If you have any of the signs and symptoms of sarcoma, please contact your GP.
Sarcoma UK provides patient guides, online and in the printed format: these are also available from Plymouth NHS Hospital Derriford: https://www.plymouthhospitals.nhs.uk/sarcoma-patient-information
Sarcoma UK has a free support line: 0808 801 0401
Derriford also has a helpful online glossary of medical terminology which patients might hear during their treatment: https://www.plymouthhospitals.nhs.uk/sarcoma-glossary
Penny Brohn (https://www.pennybrohn.org.uk/other/sarcoma/) has a similar non-clinical description of sarcomas. Their information includes:
- Risk factors
- Getting diagnosed and treatment
- How we can help you live well and manage your symptoms and side effects
Sarcomas are rare, which is why an understanding of this type of cancer is low. It’s not clear what causes soft tissue sarcoma.
Support Groups:
There are no Cornwall or Devon sarcoma peer support groups, but there are several online support groups which can be found here: https://sarcoma.org.uk/support/support-groups/find-a-support-group/online-support-groups/
Macmillan have an online forum for soft tissue sarcomas: https://community.macmillan.org.uk/cancer_types/soft-tissue-sarcomas-forum
And bone cancer: https://community.macmillan.org.uk/cancer_types/bone-cancer-forum
Podcasts and their place in cancer support
What’s a podcast? A podcast is like a radio show of any length that you can download or listen via the internet at a time that suits you. Podcasts are typically hosted by one or more people who lead a conversation, invite guests, and share stories. Because they are transmitted by the internet, pretty much anyone with the right equipment can do it, you don’t need a licence.
Here we look at audio podcasts: video podcasts are also available.
The benefits of a podcast: You can listen when you want. So, if you want to be private, feel you may be emotional or want time to think about what you are listening to, you can set aside a time and place and use headphones, or perhaps share it with someone in a similar situation. Podcasts often tackle issues that may not be brought up in your medical treatment or in your family. You can listen to personal experiences – good and not so good – that maybe you can identify with. Having the same host can build familiarity and feel like being part of a community. For people on their own and isolated, they can bring a human voice and a feeling of being connected.
A note of caution: many podcasts express individual experiences and views. Podcasts' value lies in enabling these voices to be heard. Bear in mind that views and experiences may not be yours or may differ from evidence-based information. This may be upsetting or confusing. It can help to have a trusted friend to talk to and to check any advice you hear with your health and social care team.
Cancer support podcasts:
A Google search for cancer podcasts will bring up a list for you to dive into, here are a few for starters:
You, Me and the Big C: Putting the can in cancer: hosted by the late women Dame Deborah James and Rachel Bland and their co-hosts Lauren Mahon and Steve Bland. 89 episodes are available using the presenters’ experiences of bowel cancer to cover topics such as cancer myths, the dos and don’ts of talking to someone with cancer; beauty and cancer, sex and fertility. The presenters are often joined by guest contributors affected by cancer who discuss other types of cancer. (https://www.bbc.co.uk/programmes/p0608649)
Macmillan’s Talking Cancer podcasts https://www.macmillan.org.uk/cancer-information-and-support/diagnosis/talking-about-cancer/talking-cancer-podcast includes cancer as a single parent; talking to children about cancer; grief and picking up the pieces, and cancer as a taboo subject.
Shine Cancer Support for people in their 20’s, 30’s and 40’s. https://shinecancersupport.org/
Their podcasts ‘Not your Grandma’s Cancer Show’ includes topics such as when you are a parent with cancer; when your parent has cancer; sex and fertility; when you are not allowed to talk about cancer and Queer with Cancer.
Penny Brohn has a list of general cancer podcasts and some listed by cancer type for you to try: https://www.pennybrohn.org.uk/resource/cancer-podcasts-guide/
That is it for this week, please contact me should you wish to find out more or add something to our weekly feed - Mary.Austin@ageukcornwall.org.uk - more coming next week
Newsfeed w/e 24th June
20-26th June is Cervical Screening Awareness Week
Cervical screening should be offered to all women and people with a cervix aged 25 to 64.
It is offered:
- every 3 years for those aged 25 to 49
- every 5 years for those aged 50 to 64
Jo’s Cervical Cancer Trust has information and resources on the concerns that might prevent anyone with a cervix from taking up their cervical screening opportunity: https://www.jostrust.org.uk/get-involved/campaign/cervical-screening-awareness-week
- Pain: endometriosis, menopause, and vaginismus can add to the discomfort of cervical screening.
- Embarrassment and anxiety
- Screening after sexual violence
- Physical and learning disabilities: concerns around booking, access, stigma, communication with healthcare workers.
Jo’s Trust includes information for Trans and non-binary people including taking control of your appointment: https://www.jostrust.org.uk/information/cervical-screening/trans-non-binary
It comes with a Self-care note: This page talks about cervical screening and genitals. If you find this distressing or triggering, remember to take it at your own pace – you may prefer to read small sections, wait until you feel ready to read it all or choose not to read it at all.
Macmillan says that 1 in 4 people do not attend their screening appointment.
They understand that it can be embarrassing and daunting, so have put together FAQs to answer common issues such as:
- Is cervical screening really necessary?
- What’s the difference between a smear test and cervical screening?
- Does it hurt?
https://www.macmillan.org.uk/cancer-awareness/cervical-screening-awareness-week
Hear from personal experience: First-time screener Olivia writes a blog about her experience of having her cervical screening during Covid: https://www.whwcornwall.co.uk/blog/post/cervical-screening-awareness-week---olivias-personal-experience
Ovarian Cancer: Did you know a smear test will not detect ovarian cancer. It is only used to check the health of your cervix. A smear test result showing no abnormalities does not mean that a person does not have ovarian cancer.
Ovacome (The Ovarian Cancer Support Charity) says: Cervical screening (a smear test) is very important, as it can prevent cervical cancer, but please remember that it’s equally important to be aware of your risk for other gynae cancers such as ovarian, and to know the common symptoms to look out for.
Getting Ovacome’s straightforward message about the signs and symptoms to anyone born with ovaries is vital and many of our supporters distribute our B.E.A.T. campaign materials to places they visit and people they meet.
B is for bloating that doesn’t come and go
E is for eating difficulty and feeling full more quickly
A is for abdominal and pelvic pain you feel most days
T is for toilet changes in urination or bowel habits
Order posters and other resources to raise awareness of the symptoms of ovarian cancer to anyone who has ovaries: https://www.ovacome.org.uk/order-resources
‘If you were born with ovaries, then it’s important to be aware of your risk of ovarian cancer’.
Ovacome has general information for people not diagnosed with ovarian cancer, including information for transgender men, non-binary people, and intersex people. This information includes self-care warnings and support:
‘We know it can be difficult to read about parts of the body that you may associate with being assigned the wrong sex at birth. So, we have split this post into different sections so it is easy to read and come back to at a later time. If you need any support or want to talk anything through, please contact our support team on 0800 008 7054 or at support@ovacome.org.uk’.
For people diagnosed, or for families Live Through This offers support for LGBTQ+ people affected by cancer: https://livethroughthis.co.uk/
Looking for a Cancer Support Group?
The Cove keeps the up-to-date list of Cornwall Cancer Support Groups. Our phone lines remain open from 9 am to 5.00 pm on weekdays on 01872 256363 or contact us via email at thecove@nhs.net.
Newsfeed June 17th
We have loads going on in June...
Men’s health week 13th to 19th June
This year, Men’s Health Week is focusing on encouraging men (and others!) to give themselves a self-MOT.
Macmillan says that around 50,000 men have missed a cancer diagnosis during the pandemic as people took their eye off the ball (literally!!) and prioritised other people and other needs before their own health.
Time for men to give themselves an MOT! It covers cardiovascular factors, diabetes symptoms, general warning signs such as changes in bowel habits, persistent cough, unexplained lumps, testicular cancer, prostate cancer risk checker, bowel and other screening for men over 50, and urges men to:
- take note of what is happening in their mind and body
- carry out a DIY Man MOT, available at menshealthforum.org.uk
Men’s Health Forum also have an interactive manual aimed to boost mental wellbeing, Man MOT for the Mind on their website, along with a number of other resources.
Cancer organisations supporting Men’s Health week include:
Lymphoma Action: https://lymphoma-action.org.uk/man-mot-mens-health-week-2022 listing common symptoms of lymphoma for self-checking.
Orchid: Penile, testicular and prostate cancer awareness and support: https://orchid-cancer.org.uk/awareness-education/male-cancer-awareness-week/ who have a link to My Penile Cancer journey- advice from a 63-year-old man who was embarrassed about a blister on his penis, so decided to wait until it went away – it didn’t. So, when it was ‘the size of a cauliflower’ he did consult the GP. The story has a happy ending (hmm, not for the end of his penis) but is not without a lot of fear and medical intervention which could have been avoided if he had felt able to go to his GP at the first sign.
We are still in Pride month, so it is topical as well as important to include news of a collaboration between Coppafeel and Live Through This on chest checking: https://livethroughthis.co.uk/campaign/chest-checking/
Live Through This says: ‘We know that breast cancer information can be overly gendered, too pink or show images of breasts that might trigger dysphoria in some of us and we wanted to address this issue head on.
Our chest-checking guidance is written and displayed in a way that aims to be as gender-neutral as possible so that everyone is able to benefit from it. Cancer can affect any of us, so it is important that cancer information is accessible to all of us. By being more creative with the way we display health information, in this case by using fruits, we are able to get around the potentially triggering images that we usually see in cancer resources or any expectations that some of us might feel about how our body is “supposed to look.”
Everyone’s bodies are different and that is okay. Our goal is for people to get to know their normal, and seek help if they notice one or more of the symptoms’.
Learning Disability awareness week is 20th to 26th June
Mencap says the week ‘is all about making sure the world hears what life is like if you have a learning disability’. https://www.mencap.org.uk/LDWeek
Searching their site using the word cancer brings you links to a range of downloadable easy-read information on aspects of cancer.
Cancer UK has a different range of links including information books set out as ‘real-life stories’ which may be easier to relate to. It includes a story about a woman with Down’s Syndrome who is told she has cancer - this story covers how scared she feels as well as what treatment is offered. https://www.cancerresearchuk.org/about-cancer/coping/general-books-links/for-people-learning-disabilities
Macmillan also produces a range of 58 easy-read titles which can be ordered from Be. Macmillan.
Health inequalities:
The NHS states: (https://www.england.nhs.uk/cancer/case-studies/more-patients-with-learning-disabilities-take-up-bowel-cancer-screening-with-support/) Research indicates that people with learning disabilities have poorer general health, and are more likely to die younger than the general population. Their uptake of cancer screening is lower and they have a higher risk of gastrointestinal cancer.
And there is evidence that people with a learning disability do not take up their annual GP health check: https://www.bmj.com/content/364/bmj.l404
Dan Scorer at Mencap describes this as ‘shocking’. He highlights that health checks provide an opportunity for earlier diagnoses and interventions for health problems, as well as enabling hospital staff to identify people’s disabilities and provide reasonable adjustments that could save their lives.
For health professionals who want to increase their understanding of the experience of people with learning disabilities who they may meet in healthcare settings, Macmillan has produced the very readable 7 Steps to Equal Healthcare. It covers empathy for the life experiences of people with a learning disability; good practice guidance in communication; finding out what matters to the person and who is important in their life; who are the other professionals who can help, such as learning disability nurses; giving information in an understandable way and breaking bad news; ensuring the environment is comfortable; considering all alternatives of treatment no matter how difficult to find ways that work for the person. A perfect fit with the aims of Learning Disability week!
https://www.macmillan.org.uk/_images/7_Steps_to_Equal_Healthcare_tcm9-338065.pdf
Whenever we, as health and social care professionals, come into contact with someone with a learning disability, we ask those questions about how they are looking after their health and what support they need to do this.
That's all for this week - do contact us at Mary.Austin@ageukcornwall.org.uk if you wish to get involved with our Creating Cancer Caring Communities campaign...
Newsfeed June 3rd 2022
June is Pride month
Cornwall Pride events can be found here: https://cornwallpride.org/
Age UK Cornwall & IoS will have a presence at most of the fab events – come and say ‘hello’.
6th to 12th June is carers week:
The theme for Carers Week 2022 ( https://www.carersweek.org/) is 'Make caring visible, valued and supported. We believe that unpaid carers and the challenges of caring should be recognised in all areas of life, caring should be valued and respected by everyone in our society, and carers should have access to the information and support they need, where and when they need it.
Who is a carer? A carer is someone who provides unpaid care and support to a family member or friend who has a disability, illness, mental health condition, addiction, or who needs extra help as they grow older. It isn’t someone who volunteers or is employed to provide support.
Macmillan adds: You may not see yourself as a carer. You may think you are just helping out. Recognising you are a carer can be an important step in getting the support you need.
Being a carer for someone can mean:
- giving emotional support
- helping with everyday tasks
- driving them to appointments
- talking to other people on their behalf, such as health and social care professionals
- helping with personal care
What support is there for carers of people living with cancer in Cornwall?
Cancer Support Groups: Some cancer support groups include carers, such as the Cornwall Prostate Support Association. You can get in touch via their website:
https://prostatecanceruk.org/get-support/find-local-support/cornwall-prostate-support-association
Facebook: https://www.facebook.com/Cornwall-Prostate-Support-Association-1860787660810748/
And the Kidney Cancer Support Network: Community forum (patients, family, Carers): https://www.facebook.com/groups/KidneyCancerSupportNetwork
The Cove hold the most recent list of Cancer Support Groups across Cornwall: Our phone lines remain open from 9 am to 5.00 pm weekdays on 01872 256363 or contact us via email at thecove@nhs.net for support and information relating to your cancer diagnosis, treatment and recovery.
Support available online or by phone
Macmillan have booklets for carers of people living with cancer: https://www.macmillan.org.uk/cancer-information-and-support/supporting-someone/looking-after-someone-with-cancer which includes emotional support and support for carers of people who are dying.
They have produced a separate booklet for carers of people living with dementia who also have cancer: https://www.macmillan.org.uk/cancer-information-and-support/stories-and-media/booklets/cancer-and-dementia-a-guide-for-carers
Paper copies of these booklets can be ordered from be.macmillan.org.uk
More generic support can be found at https://www.carersuk.org/. For example information on benefits, carers breaks, carers' rights under the Care Act and much more.
6th – 12th June is Bike week:
A reminder of the charity The Bike Network: https://thebikenetwork.org/
Founded by Adam, who was diagnosed with stage 3 bowel cancer in 2017, their Mission:
‘We are here to support the cancer community by supplying cycle equipment to patients, survivors and their direct family members.
Cycling doesn’t only benefit the body, it allows time to digest and think over what is happening. Whether that is during diagnosis, treatment or after the all-clear when you’re anxiously awaiting news from a follow up with a consultant or scan’.
Based in Plymouth, their bikes have been sent from Penzance to Leeds. They have also opened a preloved shop of cycling equipment.
https://www.facebook.com/thebikenetworkcharity
Newsfeed May 20th 2022
May is Bladder Cancer Awareness month
Bladder cancer is not rare – it is one of the top 10 most common cancers.
Cancer Research UK( https://www.cancerresearchuk.org/about-cancer/bladder-cancer) has a page of information on the symptoms, treatments and how to lower your risks and what increases the risk including:
- Around half of all bladder cancers are caused by smoking because smoke gets into the bloodstream, is filtered by the kidneys and ends up as urine stored in the bladder.
- The risk is higher if having many or long-lasting bladder infections or having a catheter long-term.
- Risks are higher due to exposure to certain chemicals used in the industry
There are also a lot of myths about what can cause cancer: https://www.cancerresearchuk.org/about-cancer/causes-of-cancer/cancer-myths such as eating burnt toast, using a mobile phone or drinking from plastic bottles…….
Action Bladder Cancer UK ( https://actionbladdercanceruk.org/bladder-cancer-awareness-month/)
has a handy symptoms guide. Basically, if you see blood in your urine or have recurring urinary infections you should consult your GP. (If the hyperlink on the page doesn’t work – Google ABC UK ladder Cancer Symptoms Guide). Printed resources can be ordered via their web page.
They also have a Facebook page.
Fight Bladder Cancer (https://www.fightbladdercancer.co.uk/get-involved/bladder-cancer-awareness-month) has an awareness calendar, challenging us to wear orange/bake an orange cake/juggle some oranges/ host a wee dinner party/go on a wee walk ( you get the themes?).
24th May Bladder cancer patients and family members are welcome to join a supportive chat online at 19.00 GMT - email melanie@fightbladdercancer.co.uk for details.
These are all good things to reduce the embarrassment of bladder talk and get people to self-check and get an early diagnosis.
The World Bladder Cancer Coalition (https://worldbladdercancer.org/awareness-month/) continue the theme of overcoming embarrassment and advise people ‘Don’t Go Red. Go To A Doctor’. ‘It’s a strong single-minded campaign thought: Don’t feel embarrassed by these symptoms or talking about them. Act on them. It also has a double meaning on the use of the word “red”. Embarrassment is associated with blushing or turning red and with the main symptom of bladder cancer being the presence of blood, red, in the urine’.
Local Bladder cancer Support Groups:
- For North East Cornwall: Barnstaple Bladder Cancer Support Group, North Devon Leisure Centre, Seven Brethren Bank, Barnstaple, Devon, EX31 2AP (Tel: 01271 311877)
- Derriford Hospital: Tel: 01752 431534
Macmillan have an online bladder cancer forum: https://www.macmillan.org.uk/bladder-cancer-awareness-month
You can also contact The Cove Macmillan Cancer Support: Our phone lines remain open from 9 am to 5.00 pm weekdays on 01872 256363 or contact us via email thecove@nhs.net for support and information relating to your cancer diagnosis, treatment and recovery.
Dying Matters Awareness Week 2nd-6th May 2022
Cornwall Hospice Care ran a successful online drop-in on a variety of topics around palliative care and end of life. Each session attracted 50-60 people.
I (Mary Austin) attended two sessions relevant to Age UK Cornwall and IOS/Macmillan non-clinical cancer support:
Cornwall Hospice Care community services team looked at ‘all things community' with an inspiring session delivered by Claire Bray, Gwendoline Treseder and Lollie Brewer, it was great for community colleagues to gain a deeper understanding of the work the team does and how the services on offer can benefit their patients and loved ones. Browse their Community Services website: https://www.cornwallhospicecare.co.uk/our-community-services/ and find out about the Listening Ear Service; Neighbourhood hubs; the new Walk Talk Kernow; Useful Links Directory and much more.
Sam Facey, Senior Staff Nurse at Mount Edgcumbe delivered an insightful session exploring the end of life care needs of those people who are homeless and approaching the end of life. Sam discussed enabling choices in challenging circumstances giving the teams a greater insight and sharing the positive impact of her outreach work.
For the Macmillan Project, there is thinking to do on how we reach the homeless community including rough sleepers; people who are sofa surfing; and the ever-growing number of people made homeless by end of tenancies across Cornwall. We can understand that for people in this situation, finding shelter and food, childcare and finances will take priority over managing health, well-being and lowering cancer risks. So, we will offer our online training to anyone supporting people who are homeless. We will make efforts to contact you with an offer on our July Cancer Awareness sessions or shorter sessions to fit with staff training days. Or you can contact us: kerstin@ageukcornwall.org.uk
Deborah James, presenter of the BBC podcast You, Me and the Big C, has been very public about her cancer journey and her end of life. The growing number of people choosing to share their cancer stories will no doubt help us all to be more comfortable talking about cancer and the end of life.
Cancer Research UK’s article How do we die of cancer? What we know (and what we don’t) may help to answer questions about what it is like to die of cancer.
Martin Ledwick, head information nurse says:
“The questions [people ask] are many and varied, but ultimately they want to know what is going to happen,” he says. “We can give them a broad picture of what often happens and what the possibilities are.
“There are still many misconceptions. A lot of people think cancer is a death sentence; these days it really isn’t. And many expect dying from cancer to be painful and undignified. I reassure people that as long as they have good palliative care, most of the symptoms should be controllable; that they or their loved one will be comfortable.”
https://news.cancerresearchuk.org/2022/05/08/how-do-we-die-of-cancer-what-we-know-and-what-we-dont/
Newsfeed 13th May 2022
Did you know? May the 17th is International Day against Homophobia, Transphobia and Biphobia.
This fits neatly with the start of the Cornwall Pride festivals happening in a town near you throughout the summer.
Age UK Cornwall and IOS and Macmillan attended Newquay Pride on Saturday 14th May.
What an absolutely wonderful day of inclusion. We were very proud to be part of #CornwallPride
celebrations at Newquay. Thank you so much for inviting us and we will see you at the next one!
This is also an opportunity for us to look at the cancer support resources for these communities:
Firstly, as we have highlighted several times before in our newsfeeds, Cancer support organisations are promoting advice clearly marked as relevant for trans and non-binary people:
Prostate Cancer UK: Trans Women and Prostate Cancer – are you at risk? The following people have a prostate:
- cis men (men who identify as male and were assigned male at birth)
- trans women (women who identify as female and were assigned male at birth)
- non-binary people who were assigned male at birth
- some intersex people.
The prostate is not removed as part of genital reconstructive surgery because of the risk of side effects such as urinary problems and damage to nerves. Prostate Cancer UK - more info
Breast Cancer Now: Trans women and trans men can be affected by breast cancer. For information about the risks, signs and symptoms and screening: Find out more
Coppafeel: Everyone has breast tissue and people of all genders can get breast cancer. Here you can find information for people who are trans or non-binary, and anyone else who wants to know about checking and changes during transition. https://coppafeel.org/the-brazette/resources-for-trans-people/
The Eve Appeal: https://eveappeal.org.uk/gynaecological-cancers/tnbiinfo/: If you are a trans man, are non-binary or are intersex, you may still be at risk of some gynaecological cancers if you have retained any reproductive organs (womb, cervix, ovaries, Fallopian Tubes, vagina and vulva) and should know what symptoms to look out for and how you can look after your gynaecological health.
‘We understand that thinking and talking about your gynaecological health might be difficult and there is very little information out there which is relevant and accessible. That is why we have put together this information to help you access the healthcare you need’.
Ovacome: https://www.ovacome.org.uk/blog/transgender-day-of-visibility Their information page includes links to trans and non-binary people talking about their experiences of being diagnosed with ovarian cancer and links to support organisations across Great Britain
Live Through This, in partnership with Macmillan have supportive information about talking to your healthcare team. ‘Your healthcare team should offer you care, support and information that meets your needs. But we know that sometimes trans and non-binary people may face extra challenges in getting the right help’. https://livethroughthis.co.uk/trans-and-nonbinary/
Their information explains the screening you need, FAQs about the impact of gender-affirming treatments on cancer risk; tips on important things to consider that may be helpful to the healthcare team (such as your pronouns, and who is significant in your life).
Macmillan, in partnership with Switchboard and with contributions from gay, lesbian, bisexual and transgender people have compiled this guide for health professionals highlighting good practice for sensitive care:
Transwiki: has an interactive map of Great Britain to find support organisations or trans and non-binary people (including young people) https://www.gires.org.uk/tranzwiki/. These are not cancer-specific.
19th May is Global Accessibility Awareness Day
A chance for us to look at work towards making cancer support accessible for all. Most of this information has been mentioned before in Newsfeed – so we can summarise it here.
Accessibility of screening and treatment: Today’s article on supporting people from the Trans and non-binary communities is a good example of health services recognising and overcoming the barriers for screening and follow up treatment.
In Cornwall, transport can be an issue. Hospitals may be over an hour away by car and several hours by public transport. Local transport initiatives are available:
TAP: Age UK Cornwall and IOS provide door-to-door transport services for those that cannot access conventional forms of transport: https://www.ageuk.org.uk/cornwall/our-services/transport-services/. his is a chargeable service, prices are accurate at the time of publication, April 2022. £3.00 per booking fee and 45p per mile. Phone: 01872 223388.
Volunteer drivers are always welcome.
Cornwall County Council has this handy summary: Read it here
More Information:
Easy-Read information is increasing. Macmillan has 58 ‘easy-read’ titles: such as Cervical screening; claiming benefits when you have cancer; talking about cancer and your feelings; https://be.macmillan.org.uk/be/s-428-easy-read-titles.aspx
Cancer Research has a list of resources for people with learning disabilities.
Here are Easy Health’s cancer leaflets: https://www.easyhealth.org.uk/resources/category/7-cancer
You need to register online to download resources – it’s free.
Other languages:
Macmillan produces a range of titles which can be downloaded or paper copies ordered from Be-Macmillan: https://be.macmillan.org.uk/be/s-373-other-languages.aspx
Help in your language: ‘If you need cancer information or support in your language, we can help you. You can ask for information to be translated for free in one of 200 languages, or have an interpreter for the Macmillan Support Line or online web chat’. https://www.macmillan.org.uk/cancer-information-and-support/get-help/in-your-language
On 6th May, our newsfeed highlighted the cancer resources and support for the Deaf Community including videos in BSL.
This PHE ( Public Health England) screening blog has links to audio versions of cancer support information for blind and partially sighted people., as well as tips to make information accessible: Find it here
Physical access, including Changing Places:
RCHT (Treliske Hospital information): https://www.royalcornwall.nhs.uk/our-care-promise/practical-help-and-advice/
NDDH (Barnstaple): Disabled parking guide and accessible transport: There is also a Changing Places accessible toilet on the site. https://www.northdevonhealth.nhs.uk/services/living-with-and-beyond-cancer/parking-and-travel/
Derriford Hospital has a changing places toilet. And other disability-friendly facilities: https://www.plymouthhospitals.nhs.uk/disabled-facilities
Here is the Changing Places website where you can check the location of accessible toilets across the UK: https://www.changing-places.org/
Newsfeed 06/05/2022
3rd – 9th May: Sun Awareness Week.
Oh, don’t we love the sun! We can’t wait to get out there – in the park, on the beach, in the garden. But wait……
The South West has one of the highest rates of skin cancer incidence in England (2018 figures)
As you might expect, those most at risk are people whose work is outdoors, or who play outdoors (including children and sporty people).
The Melanoma Fund has clear information about avoiding the risk of skin cancer; how to spot it developing; FAQ’s on the use of sunbeds (spoiler alert – DON’T); striking the balance between getting your vitamin D and getting sunburn.
https://www.melanoma-fund.co.uk/about-melanoma/melanoma-facts-and-advice/
The British Skin Institute has more bad news about who is more likely to be at risk….
https://www.britishskinfoundation.org.uk/are-you-at-risk-of-skin-cancer
‘Your skin colour or type is the main factor in your risk of developing skin cancer. People who burn easily in the sun are at increased risk of skin cancer…Different types of skin are at greater risk of sun damage. ALL types of skin are susceptible to sun damage: however, the paler your skin the more susceptible you are likely to be to sun damage and skin cancer’.
Checking includes
Melanomas – linked to moles: Any changes to your skin can be a concern, but in the particular lookout for growing size, changing shape, developing new colours, bleeding, pain, crusting, red around the edges or itching. About once a month, check your skin for moles or marks that are changing or new.
Non-melanomas: Non-melanoma skin cancers are more common than melanomas. They are not connected to moles and can be less serious as they are less likely to spread to other parts of the body.
https://www.britishskinfoundation.org.uk/what-is-skin-cancer
If you have a mole that is worrying you – talk to your GP.
Not sure? Miiskin (https://miiskin.com/app/) has an app (free trial, then payment needed) and photos of typical and atypical moles for you to track and compare your mole.
Some Good News
Shall we have some good news? Here’s Cancer Research’s Sun Safety guide: https://www.cancerresearchuk.org/about-cancer/causes-of-cancer/sun-uv-and-cancer/sun-safety
And: sun-safe clothes: https://www.skincancer.org/skin-cancer-prevention/sun-protection/sun-protective-clothing/. No need to spend a fortune – a wide-brimmed hat; loose-fitting long-sleeved cotton shirt and loose trousers (both in dark or bright colours) give the best protection.
It's also National Deaf Awareness week:
It is tempting to assume that as there is so much literature about cancer and support, this would be fine as a way to communicate with Deaf people. A BBC interview with Coleen McSorley, who has been deaf from birth tells a different story.
The 56-year-old said she was given wads of literature about her cancer - but like many people who have been deaf from birth, she struggles to read.
"English is my second language after British Sign Language," said the cleaner, from Stirling.
"At the hospital, a big barrier was they were wearing too many masks. They were all talking at me but I didn't understand what they were saying, it was horrendous’.
Coleen was eventually provided with an interpreter and has received more support from her local Maggie’s:
‘Deaf people lack the exposure to cancer information which hearing people take for granted.
https://www.bbc.co.uk/news/uk-scotland-60231182
RCHT Treliske has support in place for Deaf and hard of hearing patients: https://www.royalcornwall.nhs.uk/our-care-promise/practical-help-and-advice/
Many of the reception areas are fitted with loop systems to help people with hearing loss.
‘If you would like a BSL interpreter to help you communicate with hospital staff, please contact the department where your appointment is due as soon as possible. This information should be on your hospital appointment letter. If you need any patient information booklet or information leaflet in large print, braille, audio format or in another language, please ask your nurse.’
My Sunrise App: https://www.mysunrise.co.uk/ is a free patient cancer information app for android or apple phones. It covers all the NHS cancer centres in Cornwall and Devon. The videos are now available in BSL. To access the videos on the app, you will find them in the Cancer Centre section of the App. Scroll to the bottom of that page and tap on the button labelled Resources in British Sign Language.
Hearing Loss Cornwall says: It is estimated that 1 in 5 of the population of Cornwall and the Isles of Scilly live with some form of hearing loss - and numbers continue to grow. Our charity can provide information, advice, training and communication support, including British Sign Language interpretation services.’ Please note, there is a cost to services for the BSL interpreters.
Website: https://www.hearinglosscornwall.org/
Email: info@hearinglosscornwall.org
Telephone: 01872 225 868
Text Relay: 18001 01872 225868
The RNID have information on communication support – including useful information on Deaf people’s rights and service reasonable adjustments under the 2020 Equalities Act: https://rnid.org.uk/information-and-support/communication-support/
What it means to be deaf and have bowel cancer
‘Claire Adshead, 46 from Hemel Hempstead, was born deaf and diagnosed with stage 3 bowel cancer in May 2019. She shares with us how this impacted her diagnosis and treatment’. This piece includes the worrying news that Deaf people may delay going to their GP because of concerns with communication – resulting in cancers not being diagnosed until later stages, with poorer outcomes.
Sign Health: https://signhealth.org.uk/videos/
‘This is the largest BSL health video library, covering topics from cancer and depression, to types of abuse and how to perform first aid. Modern medicine depends on informed patients. Deaf people should have access to the health information we need’.
Includes Macmillan Cancer Information BSL videos; cervical and breast screening promotion; signs and symptoms of various cancers and much more – use the link to search or just keep pressing the Load More button to explore what is available.
https://signhealth.org.uk/video-category/your-body/
Newsfeed April 29th
We are ready to round off April by sharing a personal story:
Testicular Cancer Awareness Month, we hear from Patrick about his use of Steve’s Intelligent Fitness Gym in Penryn which specializes in fitness during and after a cancer diagnosis.
"It goes without saying that having Cancer, testicular or any other type, is a life-changing 'experience'. The most important thing I could say to anyone is to check and check regularly. If you find anything you aren't sure about - see your GP. The earlier you catch it the better your chances and the less severe the consequences."
"For those who have had cancer, they'll know recovery can be a long journey and one you don't necessarily end up in the same state pre-cancer. For me, it was certainly life-changing. Neuropathy (pain in hands and feet), shortness of breath and back pain from getting out of shape and the impact of the orchidectomy (removing the cancerous testicle) has changed my lifestyle."
"I've tried lots of things, but the best results came from getting and staying, fit."
"Soon after I finished Chemo I started visiting Steve at the gym twice a week. Not only did it give me a focus on getting fit and Steve was on hand to help along the way, but something I didn't expect was that it was a chance to meet a great group of other guys who'd had cancer. This was a chance to chat chemo, share cancer stories and help realise you aren't the only one. It sounds stupidly obvious, but for anyone who has had cancer - whatever your age, shape, gender, diagnosis etc - getting fit again is one of the best things you can do. Get someone like Steve to show you suitable exercises. It takes dedication and time but it is well worth it."
Patrick Spink
If you are interested in joining Steve’s Gym, there are some spaces free.
Steve Winnan
Personal Trainer
Intelligent Fitness Cornwall
M: 07908334832
E: steve@intelligentfitnesscornwall.co.uk
28th April: was ‘On your feet Britain Day’
Cancer Research UK tells us about the importance of activities – the benefits reach far more than helping recovery in cancer treatment!
- Keep a healthy weight
- Reduce the risk of cancer
- Improve mood and reduce stress
- Reduce the risk of heart disease
- Reduce the risk of osteoarthritis
- Reduce the risk of dementia and depression
- Reduce the risk of falls in older adults
- Socialise
- Learn new skills
The Benefits - by Cancer Research UK
This is a good time to remind you of all cancer-specific activities:
Dance Centred: Move Together: Dance sessions for women affected by cancer.
Mondays 11-12.30 from 9th May (please see Hot News below)
Do you know a woman coping with a cancer diagnosis? Could be their own diagnosis, going through treatment or caring for a loved one. Then we invite you to share the news about our Move Together Dance sessions, Newquay.
A series of 8 creative dance sessions for women who are affected by Cancer, anywhere in that journey. You can expect a nurturing environment supporting all energy levels. The focus will be on creativity, movement and the body rather than illness and treatment. The sessions are funded by Active Cornwall and spaces are limited. For more info and to book your space visit www.dancecentred.co.uk/what-we-do
Hot News: The May course is now full – please email Dance Centred to get yourself on a waiting list. The more demand, the more chance of continuing funding for more sessions!
The Cove Macmillan Cancer Support Centre: (part of Treliske Hospital, Truro)
Physiotherapy is a service on offer at The Cove. Your consultant or clinical nurse specialist can usually arrange a referral if there are problems you need advice about.
A physiotherapist can help you:
- build your physical fitness
- improve your energy, strength, joint range of movement, coordination and balance
- manage the side effects or late effects of treatment
- enjoy and increase your physical activities and avoid injuries
- manage breathlessness and fatigue
For more information about this service please call The Cove Macmillan Support Centre on:
01872 256 363 thecove@nhs.net
Macmillan: Physical Activity and Cancer
Cancer treatment and side effects can leave you tired. People around you may be anxious about suggesting any kind of physical activity. This booklet should give you confidence and ideas to get moving and enjoy activities. To Download or order a copy of this booklet from Macmillan - click here.
Activities don’t have to be cancer-specific: finding something you enjoy is the key to sustaining it.
Worried about what’s suitable for you? Cost? Going on your own?
Ask at your GP surgery to speak to the Social Prescriber – activities can be ‘prescribed’ to help with the cost.
Join up with Age UK Cornwall and IOS Step into Wellness Programme or ring the Helpline on 01872 266383
Find a like-minded friend and try some freebies: Park Runs; beach cleans; offer to walk someone’s dog; get off the bus a stop earlier; YouTube fitness videos: HITT Joe Wicks ( that’s a type of exercise apparently, not an invitation!); no equipment required with Cassy Ho; Yoga with Adriene – beginners welcome; dance like no-one’s watching with Danielle Peazer. Plenty of choices – oh, and Mr Motivator is still on YouTube!!!! Dust off those rainbow leggings, mismatch your socks and get going! https://www.youtube.com/watch?v=deurBniQWkw
That's all for the month, have a fabulous bank holiday weekend - remember to try something new.
Newsfeed 22nd April
Did you know? Monday 25th April to Sunday 1st May is Lesbian visibility week.
‘Our aim is BOTH TO celebrate lesbians and show solidarity with all LGBTQI women and non-binary people in our community. We believe in unity, and lifting up those who are most marginalised’.
https://www.lesbianvisibilityweek.com/
This is a good opportunity to look at how cancer impacts lesbian women.
Does being a lesbian raise your risk of cancer? No. What does raise your risk are some lifestyle choices and neglecting health checking and screening opportunities.
Not all cancers can be prevented: age is a big risk factor and you may have inherited damaged DNA.
However, 38% of cancer cases are preventable. Smoking, alcohol consumption, obesity and a poor diet can increase the risk of developing cancer (Cancer Research UK: https://www.cancerresearchuk.org/about-cancer/causes-of-cancer)
Research shows that LGBT people are significantly more likely to smoke than heterosexual and cisgender people…Compared with the general population, LGBT people consume higher rates of alcohol. LGBT Foundation LGBT Foundation, Pride in Practice: LGBT Foundation
The Intercom Trust ( Intercom Trust Patient Story 2019: https://www.kernowccg.nhs.uk/intercom-trust-patient-story/) names health inequalities such as higher rates of cardiovascular disease in lesbian women; poorer mental health, including a higher risk of suicide in males and females; higher rates of homelessness and of hidden domestic violence. All of which undermine a healthy lifestyle and stable support.
Research on older LGBT people in the UK (Older Gay, Lesbian and Bisexual People in the UK: A Policy Brief. Primrose Musingarimi November 2008 - finds that older LGBT+ people are more likely to live alone and have no children. Therefore, are less likely to have a family to notice changes or support their health needs.
Lesbian women are less likely to have protective factors against breast cancer such as breastfeeding and oral contraception. (Dispelling the myths: ovarian cancer risk in LBT individuals)
How can I lower my risks?
Three ways that help: Develop healthy lifestyle habits; regular; self-checking for changes in your health; take up screening opportunities.
Develop Healthy Lifestyle Habits:
Cancer Research UK advice the following:
- Not smoking
- Keeping a healthy weight
- Eat a balanced diet
- Enjoy the sun safely
- Cut back on alcohol
- Get moving
Need help to get started and how to sustain your healthy life?
Contact Healthy Cornwall or, contact your GP surgery to speak to a Social Prescriber: Social Prescribing is a method of linking people with non-clinical sources of support within the community.
Regular self-checking:
Macmillan Cancer Support offers the following advice:
‘Different types of cancer have different symptoms. Many symptoms can be caused by things other than cancer. But it is important to understand your body and be aware of any changes’.
Look for changes that are:
- ongoing (more than 3 weeks);
- unexplained – i.e. not the result of a recent fall or intentional dieting.
- unusual – not normal for you.
There are online and paper-based guides to self-checking for breast changes: here are a few:
Coppafeel: https://coppafeel.org/. Anyone can sign up for their boob checker reminder. There are self-checking leaflets in several languages and a film in BSL; they work with schools and colleges and offer resource packs.
Breast Cancer Now: also has a short video on self-checking and discusses the challenges women might have in talking about their breasts.
Macmillan: have an easy-read booklet which can be downloaded or a paper copy ordered.
Take Up Screening Opportunities
Cervical screening: There was a rumour that lesbians do not need to take cervical screening – WRONG.
Woman who do not have sex with men can get cervical cancer. Research suggests that Human Papillomavirus (HPV) can be transmitted through lesbian intercourse. This means that oral sex, transferring vaginal fluids on hands and fingers, or sharing sex toys, can all be ways of being exposed to HPV - Read more
As long as you are aged 25 to 64 and you have a cervix, then you are eligible for screening
In England, cervical screening currently prevents 70% of cervical cancer deaths. If everyone attended screening regularly, 83% could be prevented (Find out more)
A Macmillan Cancer Support survey (The Emerging Picture: LGBT People with Cancer) found that 18% of LGBT women have never had a cervical cancer screening test: this compares with 7% of women in the general population.
Breast screening: All individuals from 50 up to their 71st birthday who are registered as female with their GP are automatically invited to breast screening. There is no evidence that take-up is different for lesbians than for other women.
Other links to health information for LGBT+ women can be found on the LGBT Foundation women’s pages: https://lgbt.foundation/who-we-help/women/general-health
Follow-up treatment: In the event that follow-up treatment is needed, Stonewall found evidence that LGBTQ+ people avoid healthcare due to fears of prejudice (PHE Screening Blog)
Ovacome https://www.ovacome.org.uk/supporting-lgbtq-people-with-ovarian-cancer, is a great example of offering inclusive and non-judgemental support, including a case study of a lesbian couple’s experience of ovarian cancer.
Macmillan have worked with the LGBT Foundation to produce guidance for healthcare workers on making services welcoming to LGBT+ patients and their families/friends.
In their survey, No one overlooked: Experiences of LGBT People Affected by Cancer, concerns are discussed such as whether the patient will be ‘outed’; whether their same-sex partner will be considered to be next of kin; how will the subject of sexual identity be brought up in health discussions –and is it relevant?
This short article may give practical solutions: Should you come out to your Doctor
Newsfeed 15th April
Did you know, that April is testicular cancer awareness month!?
Pants cancer:
Raising awareness of pants area cancers.
Strengthening during and after Testicular Cancer
Physical activity has multiple benefits for both the general population and cancer survivors. Participation in exercise can improve the side effects of cancer treatments and can have a big impact on short and long-term health and quality of life.
Many individuals with cancer lead inactive daily lives. Gym based exercise classes held at The Riverside Suite, Penryn are specifically designed for cancer survivors to improve recovery during and after treatment,
Maintaining a normal lifestyle, reducing fatigue and staying strong and healthy are all key motivations when considering an exercise programme. Steve Winnan, Personal Training & Cancer Rehabilitation Exercise Specialist of iFitness Cornwall, provides free consultations (Funded by local Charity, Pants Cancers) for men diagnosed with Testicular Cancer.
After the consultation, Steve will help plan, provide, and oversee an exercise plan that can be completed from The Riverside Suite in Penryn. Up to 6 further sessions are funded by the Charity before a class fee is payable.
For more information, you can contact steve@intelligentfitnesscornwall.co.uk
Chestnut appeal:
https://chestnutappeal.org.uk/
Based at Derriford in Plymouth, the charity raises awareness of men’s health, specifically prostate, testicular and penile cancers.
Cancer of the testicle is one of the less common cancers and tends to mostly affect men between 15 and 49 years of age. Typical symptoms are a painless swelling or lump in one of the testicles, or any change in shape or texture of the testicles. It’s important to be aware of what feels normal for you. Get to know your body and see your GP if you notice any changes.
Possibly because testicular cancer is most prevalent amongst younger men, the online sites tend towards making it cool to check your pair. (possibly my use of the word ‘cool’ gives away that I am not in this age group!)
Here’s a selection
Oddballs Foundation:
https://theoddballsfoundation.com/
There is no student rep for Falmouth University – if you know anyone that works or attends there, please pass this link on.
It’s in the bag:
https://itsinthebag.org.uk/: South West’s cancer charity for testicular cancer survivors, run by testicular cancer survivors. Text and Facebook reminders to ‘check your balls’; information packs for all men diagnosed with testicular cancer – including from their Truro team.
Test Fest music festival on Saturday 18th June: Event organisers, It’s in the Bag, have moved to a new venue at Taunton Rugby Club and welcome Cornish headliners Wille and The Bandits. Tickets from their website.
Maybe you can contribute to their ‘Cookly Bookly’ #May Contain Nuts. (honestly, I am not making this up!)
Shout out to all sports people: running vests; swim hats; fitted beanies are all available from their website. And for testicular cancer awareness month, it's buy one get one free on gym bags!
Email: Richard.bullard@itsinthebag.org.uk for a sports-themed awareness pack for your sports club (tennis; cricket, golf, snooker and football-themed packs)
Movember is here all year
(don’t panic – you haven’t missed summer…men’s health is for life, not just for November) https://uk.movember.com/mens-health/testicular-cancer
How’s your pair hanging is their self-checking guide: The best thing you can do for your nuts is to give them a feel every month or so – get to know what’s normal for you. That way, if anything changes you can act on it. Includes their ‘Nuts and Bolts’ guide and ‘testi-monies’ (I did try to warn you…..) from testicular cancer survivors – And a Q&A Common questions about testicular cancer, answered by ‘real guys and doctors’, where no question is off-limits!
Baggy Trousers UK
Scared about what might happen if you find something? 9/10 people survive testicular cancer so don't be and have a read of this to ease your mind.
Sign up to their Facebook page to receive a monthly reminder to ‘check your nuts’. Jack, the founder tells me that their resources are gender-neutral – so equally relevant for transgender.
Your Privates:
https://www.yourprivates.org.uk/
Your Privates is part of Orchid charity (fighting male cancer) Testicular Cancer awareness, advice and support for men in the UK affected by testicular cancer.
Bit of knowledge for you: Orchid is named for orchiectomy – the procedure to remove one or both testicles. May be necessary to prevent prostate cancer from spreading or to treat or prevent testicular cancer or breast cancer in men. Orchiectomy is carried out as part of gender reassignment, male to female. This brings us to consideration of our trans friends and colleagues:
An important message to our trans friends:
If you have testicles, you are at risk of testicular cancer.
If you are female but have testicles, you might find it unpleasant to check them. However, it is really important that you do.
If you find anything unusual, any lumps, swellings or changes to your testicles, then you should speak to your GP.
Move Together
Dance sessions for women affected by cancer with a focus on the body, movement and creativity.
Find out more using the link below: https://www.dancecentred.co.uk/what-we-do
Newsfeed 8th April 2022
April is Bowel Cancer Awareness Month
Every 15 minutes somebody is diagnosed with bowel cancer in the UK: that's nearly 43,000 people each year. That’s the size of the combined population of Camborne and Redruth!
Visit Bowel Cancer UK’s website for up to date and reliable information about bowel cancer including symptoms, risk factors, screening, diagnosis, treatment and living with and beyond bowel cancer.
You can also download their publications and book an online awareness talk for your workplace or community group.
https://www.bowelcanceruk.org.uk/about-bowel-cancer/
How can we all benefit from bowel awareness month?
Download and read the free booklet on the simple steps people can take to help keep their bowel healthy and reduce the risk of bowel cancer. It covers how to eat well, reduce alcohol and smoking, get active and tips about maintaining a healthy weight. There is also a guide to some bowel cancer symptoms to look out for.
Time well spent!
Bowel Cancer Event
Saturday 23rd April (10.30-2 pm) on zoom, Bowel Cancer UK is hosting a free event for everyone affected by bowel cancer, including family and friends.
Experts will cover a range of topics including eating well, managing bowel habits, physical activity, coping with emotional impact and making plans as you move on from treatment.
Here’s a link to the list of speakers and topics and how to register: https://www.bowelcanceruk.org.uk/how-we-can-help/supportevents/living-with-and-beyond-bowel-cancer/
Need to talk?
Macmillan host an online bowel cancer forum: A support group for anyone affected by colon, rectal, small bowel, or other colorectal cancers to come together and share experiences. Whether you want to talk about cancer treatment, side effects or simply connect with others, this group is here for you.
https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum
For advice about the practical and financial impact of cancer and its treatment, call the Macmillan Support Line on 0808 808 00 00.
For practical and emotional support, the Macmillan online chat service offers confidential support to people living with cancer and their loved ones. If you need to talk, we’ll listen.
https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/chat-online
A Journey Into Healing The Whole; Yoga & Mindfulness for Adults Recovering from Cancer
Just a couple of weeks left until the start of this course.
Josie tells us:
This is a six-week course where we will take a gentle journey together into the wonderful world of yoga and mindfulness. We will explore a range of breathing techniques, physical postures and mindfulness practices. The course content has been designed specifically in mind for those in recovery from cancer, but it’s all just yoga! We’ve just cherry-picked some elements we feel could be particularly helpful.
The class will have a gentle pace and light-hearted delivery, with a focus on finding what feels good in your own body. It’s suitable for any level of yoga experience - if you’ve never tried yoga before, this is a great intro.
Saturdays 11-12 from 23rd April at Shiva Studio: No. 1 Chi Kresennik An Shoppa, Stret Kosti Veur Woles, Nansledan, Newquay TR8 4GZ
Please visit journeysyoga.co.uk to book, or email: journeysyogauk@gmail.com or call Josie: 07704801994 for a chat about the course and any more info.
£48 for the entire course.
That's it for this week - have a great weekend!
Newsfeed - 1st of April 2022
Did you know, that April is stress awareness month?
April is also Bowel cancer prevention month and testicular cancer prevention month!
So, where to start…
Stress!
Cancer Research UK is clear that there is no link between stress and a higher risk of cancer https://www.cancerresearchuk.org/about-cancer/causes-of-cancer/cancer-myths/can-stress-cause-cancer#:~:text=No%2C%20being%20stressed%20doesn't,whether%20stress%20causes%20breast%20cancer
However, indirectly, stress can increase your risk of cancer if you manage everyday stresses through the use of smoking, alcohol and unhealthy eating.
Our Newsfeed from 11th Feb 2022 has tips and links to review your lifestyle and where to get support to make changes.
Penny Brohn UK (Living Well with Cancer)
https://www.pennybrohn.org.uk/stress-management/stress-and-cancer/
Advises: ‘We all need stress, in small amounts at least. Stress is what keeps us safe by alerting us to situations and events that could potentially cause us harm’…..However, ‘We can easily get stuck in the stress response….When we’ve stressed our bodies go into fight, flight or freeze mode and while we’re in that mode we just don’t function effectively. Our body takes its attention away from everything that isn’t essential to immediate physical survival. It stops paying attention to memory, digestion, or repairing cells and fighting infection.’
Penny Brohn UK has self-help and online classes on many aspects of self-care: such as mindfulness, reducing anxiety, better sleep, asking for help; self-talk. Whether you are drawn to the spiritual or more practical – there is something for you here.
What is self-care?
Do you prioritise yourself? Or is there always someone or something that needs your attention so you have less time or energy for your own needs?
Penny Brohn has developed the little book of self-care, free for you to download: https://www.pennybrohn.org.uk/resource/little-book-of-self-care/
Use it for yourself or to give it to a friend as a guide to pay attention to your own health: physically, emotionally, mentally and spiritually. 30 practical ideas to make time for yourself and a reminder that looking after yourself is not a luxury – it’s a necessity: Self-care is not selfish.
Macmillan has links to resources ( not provided by Macmillan) to help people manage their stress:
Find the list here: https://www.macmillan.org.uk/cancer-information-and-support/get-help/services-you-may-find-helpful
For example, My Possible Self is an app that teaches people coping techniques to help reduce anxiety, stress and low mood. It is not a cancer-specific service, but people living with cancer may benefit from using it. https://www.macmillan.org.uk/cancer-information-and-support/get-help/services-you-may-find-helpful/my-possible-self
Macmillan also has advice for professionals who are experiencing stress and anxiety, made worse by media footage. The advice was primarily for staff during the height of covid, and continues to be relevant in these difficult times. https://www.macmillan.org.uk/coronavirus/healthcare-professionals/resources-for-managing-stress-and-anxiety
Financial stress
A source of stress for many people is the rising cost of living. People affected by cancer bear these costs alongside a drop in income from losing their job or having to take a part-time role; added costs of travel to appointments; changes in physical needs such as having to buy new clothes and having to heat the house more.
To contact Macmillan Citizen’s Advice for benefits and financial support, please call 01872 256373.
The Macmillan Support Line is open daily (including weekends) from 8 am – 8 pm on 0808 808 0000 for practical, emotional and financial information and advice.
The general Citizens Advice website: https://citizensadvicecornwall.org.uk/ Text the word ADVICE to 78866 and we'll call you back within 48 hours (excluding weekends) or phone Adviceline 0800 144 8848 Monday to Friday 10 am to 4 pm
Age UK Cornwall & IoS: Read two real-life case studies about two people whose lives were improved by a Macmillan Grant.
Thomas & Jane - A Recurring Theme
Newsfeed 18th March
March is Ovarian Cancer Awareness Month
https://ovarian.org.uk/march-ovarian-cancer-awareness-month/
Cornwall WI support for ovarian cancer awareness
Cornwall Federation of Women’s Institutes has been a strong supporter of raising awareness of the early signs of ovarian cancer:
Mawnan Smith WI invite you to support ovarian cancer awareness month and raise money for the centre at RCH Treliske (https://www.royalcornwall.nhs.uk/services/gynaecology/) to support local women going through the diagnosis and treatment of this disease. Design, make and photograph yourself in an Easter bonnet!
See their Facebook page: https://m.facebook.com/mawnansmithcornwall/posts/3496147217179116
Don’t overlook the ovaries:
Ovacome: The UK's ovarian cancer charity providing expert support and information for anyone affected by ovarian cancer. Included is a short video on the signs and symptoms; a downloadable BEAT diary to track your symptoms to help you explain to your GP (Bloating, Eating difficulty, Abdominal or pelvic pain, Toilet changes etc.)
If you are worried about your symptoms, if your symptoms aren’t getting better, or if they are worsening, book an appointment with your doctor straight away. The Ovacome support service is available on 0800 008 7054 or at support@ovacome.org.uk to talk through any queries or concerns you may have.
Services include dedicated phone lines to provide support and information in Arabic, Bengali, Gujarati, Polish, Punjabi and Urdu.
Ovacome support for LGBTQ people: https://www.ovacome.org.uk/support-for-lgbtq-people
Support group of the week:
Cornwall Gynae Cancer Support Group
Contact Emma Kent - 01872 252037 and emma.kent3@nhs.net
Emma says: We still have an online peer support page Facebook https://www.facebook.com/groups/ovariancancersupportgroup
and as always, all our Gynaecology patients have open access Mon-Fri to myself and my colleague, Emma Dyer, here in the office for advice and support using the phone and email above.
You can also contact The Cove Macmillan Information Centre, Royal Cornwall Hospital, Truro TR1 3LJ. Our phone lines remain open from 9 am to 5.00 pm weekdays on 01872 256363 or contact us via email at thecove@nhs.net for support and information relating to your cancer diagnosis, treatment and recovery. Or drop into the café on weekdays between 9.30 and 4 pm.
The weather is improving…..time to be getting out and about
Here’s a creative community initiative!
The Bike Network
https://www.facebook.com/thebikenetworkcharity/
The Bike Network gifts bicycles & cycle equipment to cancer patients, survivors & their direct family members to improve physical & mental health during & after treatment.
Who knows where the gift of a bicycle might take someone.
That's it for this week, see you next week...
Newsfeed 12th March
International Women’s Day - 8th March
What are the common cancers that affect women? And where can we get more information?
Gynaecological cancers: cervical and ovarian and cancer of the womb (endometrial) being the most common)
Jo’s Cervical Cancer Trust: https://www.jostrust.org.uk/ Helpline and 1:1 phone support; online forums; information; support events.
The Eve Appeal: https://eveappeal.org.uk/ Includes useful information on supporting women who are survivors of sexual violence to take up cervical screening opportunities. They also run the Ask Eve service that anyone can ring to share their worries about their own health or about a friend or relative in confidence.
March is ovarian cancer awareness month. We can all increase our knowledge of gynaecological cancers for our own awareness and to support other women. There is clear information on all the gynaecological cancers and downloadable leaflets on Grace: https://grace-charity.org.uk/awareness/
Breast cancer (which can also affect men).
Breast Cancer UK: https://www.breastcanceruk.org.uk/ There is a particularly useful section on 25 tips to reduce your risks. Yes, 25!!!!
Coppafeel: https://coppafeel.org/our-charity/ has a brightly coloured and informal website that specialises in raising awareness amongst young people to form healthy habits such as breast and pec checking at an early age. People can sign up for a free checking reminder text. Includes resources for Trans and non-binary people.
Locally:
Mermaid Centre for breast care – part of Treliske Hospital: https://www.royalcornwall.nhs.uk/services/breast/
The Cove Macmillan Support Centre: hosts Look Good to Feel Better makeup events; wig fitting and bra fitting events. https://www.royalcornwall.nhs.uk/services/cancer-services/the-cove/
Bra, swimwear and sportswear fitting is currently fortnightly on a Friday (staring 11th Feb): Call 01872 256 363 to book your place
These events are advertised on Cornwall Link: https://cornwall-link.co.uk/ Sign up and search using the word cancer.
For all women affected by any cancer:
Dance Centred https://www.dancecentred.co.uk/ will be offering female-only dance sessions for women affected by cancer. Use their website to get in touch and find out more.
Unpaid Carers: Carers UK says that overall, women are more likely to take on caring roles than men. Women are also more likely to be ‘sandwich’ carers - caring for young children and elderly parents at the same time
It can be difficult to identify as a carer. Macmillan says: https://www.macmillan.org.uk/_images/doyoucarehelpinghealthprofessionalstoidentifyandsupportcarers_tcm9-271232.pdf
'Carers do not always self-identify or associate with the term ‘carer’ …It is, therefore, essential that health and social care professionals are proactive in recognising when a person may be caring for someone with cancer.'
If you are an unpaid carer, contact Cornwall Carers Service for advice and guidance that could support you to continue caring (if that is your wish) and to continue to enjoy a life outside your caring role. https://www.cornwallcarers.org.uk/
Trans women:
There is an increasing amount of online information and phone support for Trans women and non-binary people to increase their take up of screening opportunities and follow-up treatment; and to give knowledge and confidence to approach their GP with concerns.
Cancer Research UK: https://www.cancerresearchuk.org/about-cancer/cancer-symptoms/spot-cancer-early/screening/trans-and-non-binary-cancer-screening
Prostate Cancer UK reminds us that Trans Women will still have a prostate: https://prostatecanceruk.org/prostate-information/are-you-at-risk/trans-women-and-prostate-cancer
Breast Cancer Now reminds us that both Trans Men and Trans Women have a risk of developing breast cancer: https://breastcancernow.org/about-us/news-personal-stories/transgender-people-breast-cancer
Support Group(s) of the week:
A reminder for the Foxy Ladies: Anna Burton 01736 710678: stmichaelsbreastcaregroup@gmail.com
Meeting place: Commercial Rd, Hayle TR27 4DE
Meetings held on the last Friday of each month from 7-9.30 pm Hayle Day Centre
Free parking
And: Breast Cancer Support Group – St Austell
Jan Acton Tel: 0172672144 Jm.acton@sky.com
Both groups offer safe, welcoming places to meet other women who have been or are going through a similar journey. New members are welcome, please contact the organisers for confirmation of dates and venues.
That's it this week, look after yourself and stay safe.
Newsfeed 11th March
10th March is World Kidney Day:
https://www.worldkidneyday.co.uk/
Kidney cancer is only one of the diseases of the kidneys. Find out some kidney facts and how to keep yours healthy by taking the Kidney quiz: https://www.worldkidneyday.org/facts/kidney-quiz/
Kidney (or renal) cancer, is the seventh most common cancer in men and women in the UK.
Symptoms:
There are often no symptoms and the disease may be detected during other medical check-ups, such as scans for high blood pressure, anaemia or liver functioning.
Blood in the urine should always be investigated – but this could be a symptom of other problems such as infection.
Persistent pain in the lower back or between the ribs and hip bone could be a symptom, as could tiredness and unplanned weight loss.
Basically, having persistent or unexplained changes to your ‘normal’ levels of functioning (bowels, appetite; weight; sleep; energy etc) or a lump/swelling/ rash is a cause to seek advice from your GP.
You can also visit Macmillan’s pages on Kidney Cancer: https://www.macmillan.org.uk/cancer-information-and-support/kidney-cancer
Support Group of the week
Well it has to be the Kidney Cancer Support Network: https://www.kcsn.org.uk/ -Need to talk? Call: 01209 890326or email: team@kcsn.org.uk
Facebook: https://www.facebook.com/groups/KidneyCancerSupportNetwork
Check out their super new website. Rose, the founder, is a Cornwall resident! Rose tells me the group started as patient peer support. It has grown to be a charity and works to advocate for services improvement on behalf of patients.
‘Like most cancer patients, our members get a great deal of satisfaction from helping and supporting each other; that’s why we exchange information and share experiences, and that’s why we like to pass on helpful tips and insights about all aspects of our care and treatment.’
There are videos of patients’ and carers’ stories along with professionals’ plain English explanations of treatments and effects.
Shared experiences include managing side effects from treatment and medication; the emotional impact on the person diagnosed and their families; the financial and work worries:
'We can all share what it feels like to wake up in the early hours of the night fearful about what the future holds for us and our loved ones.'
Community Events
We have a couple of other community events that might interest you or people you support. See their Activity Listings on Cornwall Link for more information:
Bude and Stratton Cancer Support listening Event
Monday 21st March 2-4 pm. Ivor Potter Room, Parkhouse Centre, Bude.
Hosted by NHS Primary Care Network and Bude & Stratton Town Council. This is an opportunity for anyone living in Bude, Stratton and surrounding areas, affected by cancer to contribute their experiences and thoughts to improving cancer care in the area.
A Journey into Healing The Whole; Yoga & Mindfulness for Adults Recovering from Cancer
Josie Davis from Journeys Yoga tells us:
This is a six-week course where we will take a gentle journey together into the wonderful world of yoga and mindfulness. We will explore a range of breathing techniques, physical postures (asanas) and mindfulness practises. The course content has been designed specifically with those in mind for recovery from cancer, but it’s all just yoga! We’ve just cherry-picked some elements we feel could be particularly helpful.
The class will have a gentle pace and light-hearted delivery, with a focus on finding what feels good in your own body. It’s suitable for any level of yoga experience - if you’ve never tried yoga before, this is a great intro.
Dates & Times
Saturday 23rd April 2022 : 11am - 12pm
Saturday 30th April 2022 : 11am - 12pm
Saturday 7th May 2022: 11am - 12pm
Saturday 14th May 2022: 11am - 12pm
Saturday 21st May 2022: 11am - 12pm
Saturday 28th May 2022 : 11am - 12pm
Where
Shiva Studio : No. 1 Chi Kresennik An Shoppa, Stret Kosti Veur Woles, Nansledan, Newquay TR8 4GZ
Booking
Please visit journeysyoga.co.uk to book, or email: journeysyogauk@gmail.com or call Josie on: 07704801994 for a chat about the course and any more info.
Cost: £48 for the entire course
Is this Suitable for Me?
To participate in this course, you must have had the all-clear from your doc to start exercising again. Yoga is a low impact form of exercise and we will be taking it gently, however, safety is our priority. As a general rule they recommend a minimum of 6 weeks + following treatment, but only you know what feels ok.
Once registered you will be asked to complete a simple intake form so I can get a basic understanding of your personal situation and we can make the course as fun and safe for you as possible!
That's it for this week, we hope to see you can join us next week.
Newsfeed produced by Mary Austin, Age UK Cornwall Macmillan Lead.
Newsfeed 25th February
Our last tour is Oesophageal Cancer month
Living with Oesophageal cancer:
One of the lasting effects of oesophageal cancer is a change in eating abilities.
Cancer Research UK tips for eating when swallowing is difficult: https://www.cancerresearchuk.org/about-cancer/oesophageal-cancer/living-with/eating
Macmillan state that it can take up to a year for your digestive system to adjust after treatment and offer practical advice to make eating an easier experience. https://www.macmillan.org.uk/cancer-information-and-support/oesophageal-cancer including advice on ‘dumping syndrome’ – when the food moves quickly through the digestive system.
OPA (https://opa.org.uk/opa-card-for-patients-eating-out/) recognise that after surgery for oesophageal or gastric cancer, patients often cannot eat full restaurant portions, OPA has devised a two-sided card that can be discreetly shown to waiting staff in a restaurant. The first side states “Due to a medical condition I require urgent access to toilet facilities”. The second side states “Due to a medical condition I am unable to eat normal portions of food. Please provide me with a child’s size portion”.
Help from the local hospitals:
For patients under the care of Treliske, Truro - please contact the dietician at The Cove for further advice: 01872 256363 or contact via email thecove@nhs.net
For patients using Derriford: contact The Mustard Tree: 01752 430060 for the oncology dietician team.
For patients using North Devon Hospital: Living With and Beyond Cancer Team. Email: ndht.lwbc@nhs.net or the Over and Above Centre: https://overandabove.org.uk/fern-centre/services/nutrition-information/
Less Survivable cancers:
https://lesssurvivablecancers.org.uk/
There are some cancers that have seen remarkable progress in survivability but others that are just as deadly as they were 40 years ago. Together, six of these less survivable cancers (lung, pancreatic, liver, brain, oesophageal and stomach) are responsible for half of all deaths from common cancers. Currently, in the UK over 90,000 people are diagnosed with one of the less survivable cancers every year.
These less survivable cancers still suffer from low awareness amongst the public and health practitioners. Delays in diagnosis have a detrimental effect on the survival of these rapidly-advancing diseases, which are currently difficult or impossible to treat at later stages.
The Less Survivable Cancers Taskforce is calling on the Government to increase research funding; raise awareness of the early symptoms with primary care networks and the public.
What’s a Primary Care Network?: NHS says: GP practices are working together with the community, mental health, social care, pharmacy, hospital and voluntary services in their local areas in groups of practices known as primary care networks (PCNs).
‘Through more research, better treatment and earlier diagnosis, we can close the deadly cancer gap’.
Cancer Support groups related to the less survivable cancers:
Cancer Research UK have a list of Lung Cancer Support Groups: https://www.cancerresearchuk.org/about-cancer/lung-cancer/living-with/resources-books#collapse-161195
Pancreatic cancer: Pancreatic Cancer UK patient group: ( phone 0808 801 0707) https://www.pancreaticcancer.org.uk/support-for-you/pancreatic-cancer-patient-group/
Liver cancer: British Liver Trust ( https://britishlivertrust.org.uk/information-and-support/support-for-you/helpline-and-online-community/) has an online forum and helpline ( Call 0800 652 7330 between 10am and 3pm Monday to Friday excluding bank holidays) or email helpline@britishlivertrust.org.uk
Brain: Cornwall Brain Tumour Support Group: https://www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/support-your-local-area/cornwall-brain-tumour-support-group/
Oesophageal and Stomach: A gentle reminder: OPA: https://opa.org.uk/; Guts UK: https://gutscharity.org.uk/
Don’t forget:
The Cove (https://www.royalcornwall.nhs.uk/services/cancer-services/the-cove/) Macmillan Support Centre holds the up to date list of Cornwall Support Groups as well as national ones.
Phone: 01872 256363 or contact us via email thecove@nhs.net
And you can contact the Macmillan Support Line: 0808 808 00 00 7 days a week 8 am to 8 pm
Newsfeed 18th February 2022
More from Oesophageal Cancer Month
Last week, we looked at how you can lower the risks for oesophageal cancer. This week, we are looking at symptoms and where to get support.
This type of cancer does not usually cause any symptoms in the early stages and is often picked up late.
Two other trustworthy sources of information online:
And
Cancer Research UK: https://www.cancerresearchuk.org/about-cancer/oesophageal-cancer
both state that the common early symptoms are:
- difficulty swallowing (dysphagia)
- indigestion or heartburn that doesn't go away
- unexplained weight loss
- pain in your throat or behind your breastbone
Cancer Research UK advises: You should see your doctor if you have difficulty swallowing, or you have symptoms that are unusual for you or that won't go away. Your symptoms are unlikely to be cancer, but it is important to get them checked by a doctor
Worried, but unsure of whether to visit your GP?
You can call the Macmillan Support Line on 0808 808 00 00 to talk to a cancer information specialist
They can’t give you personalised advice, but you can talk though your symptoms and your concerns.
Newly diagnosed or supporting someone and need some support yourself?
Macmillan Oesophageal cancer forum puts you in touch with other people affected by this type of cancer: https://community.macmillan.org.uk/cancer_types/gullet-oesophagus-cancer-forum
You might also be interested in:
Action Against Heartburn: https://www.actionagainstheartburn.org.uk/
Heartburn (also known as acid reflux) can do damage to the cells of your gullet (oesophagus), the tube linking your throat and your stomach, if it persists for a long period.
Black History Month
They say as you get older time goes faster – but imagine my surprise when Black History Month came around so fast...
The answer lies in their being 2 Black History months. In the USA, it’s in Feb: in the UK we celebrate in October.
But why wait until October…
Cancer and black and minority ethnic communities http://raceequalityfoundation.org.uk/wp-content/uploads/2018/07/REF-Better-Health-471-1.pdf
A 2018 paper by Dr Qulsom Fazil, states ‘There is a higher incidence of certain cancers in black and minority ethnic communities and the general incidence of cancer in these communities is rising’.
The poor understanding of why this is so is due to a lack of data relating to these communities; limited acknowledgement by health professionals of the needs of these communities and their poorer experience of cancer care (examples include lack of interpreters/lack of sensitivity for religious and cultural practices/prosthesis not matching to skin tone). The paper includes some positive initiatives such as improving screening uptake in areas of London by careful siting of the screening venue and consideration of the variety of ways communities get their health care information.
Macmillan: The Rich Picture People with cancer from BME Groups ( 2014) https://www.macmillan.org.uk/_images/bme-groups_tcm9-282778.pdf
Although the prevalence of cancer for Black and Asian people is comparable with white people, the take-up for screening, cancer awareness and help seeking is lower across all BME groups than for white. People from BME groups are less likely to take part in clinical trials or take up palliative and end of life care.
This paper includes information on travellers and Polish economic migrants.
I would recommend both papers for professionals and community group facilitators to provide context and considerations of challenges in enabling people to engage in their health care.
Higher risk of Prostate cancer:
Prostate Cancer UK says: ( https://prostatecanceruk.org/prostate-information/are-you-at-risk/black-men-and-prostate-cancer)
1 in 4 black men will get prostate cancer in their lifetime. Black men are more likely to get prostate cancer than other men, who have a 1 in 8 chance of getting prostate cancer.
The reason for this is not clear: it is possibly genetic. Prostate Cancer UK is looking for black male volunteers to take part in research to better understand the risk.
Cancer Support Group of the week:
A reminder this week (first highlighted on the newsfeed 28th Jan) to fit with Black History week
This week, its Cornwall Prostate Support Association: Secretary Rhoda Kirman tells me ‘We support men with prostate cancer and also give support to their families. We keep in touch online with those of our members who can do so and by telephone and letters with those who are not computer literate’. The group is currently looking for a venue to meet in person.
Contact details: rhoda.kirman@gmail.com: 01872 264442
Facebook: https://www.facebook.com/Cornwall-Prostate-Support-Association-1860787660810748/
Age UK Cornwall's Impact in 2021 | Annual Review 20-21
Our partnership with Age UK Cornwall has been a huge success, helping many people across Cornwall and the Isles of Scilly.
"We are extremely proud of our staff, partners, supporters and wonderful volunteers for helping over 55,000 people in Cornwall and South Devon. In 2021, we also received over 52,000 calls, deployed over 320 volunteers and staff to support people, and completed an astonishing 67,658 trips & outings via our transport services."
You can find out more about our Age UK Cornwall's impact on their 2021 Infographic. Or visit this link to read their annual review. Annual Review 2021 - Inspiring Individuals and Communities to Age Well
Newsfeed 11th February 2022
Did you know? February is oesophageal cancer month
Guts UK says https://gutscharity.org.uk/
Oesophageal cancer Is a type of cancer that develops in the gullet, the tube that links the mouth to the stomach. It affects men more often than women, with almost 7 out 10 cases being male and it is particularly common among white males. The risk of developing oesophageal cancer increases with age, with drinking, smoking and being overweight also increasing risk.
So, what support is there to help us reduce our risk of oesophageal cancer? That might not be much we can do about the natural ageing process, however, we can lower 3 risks…….
1. Reducing your alcohol intake
Did you know that drinking even one beer a night is one too many? That's because our body should have 48 hours off after any drink, to allow it to recover. Healthy Cornwall has guides to being aware of your consumption and taking steps to reduce it.
https://www.healthycornwall.org.uk/make-a-change/one-too-many/
2. Stop Smoking:
Healthy Cornwall also runs Smoke-Free Cornwall: advice via videos, emails, the Stop Smoking Support Bulletin; free quit plans; Q & A on use of vapes. Loads of info – all here:
https://www.healthycornwall.org.uk/make-a-change/smokefree-cornwall/
3. Guess who has free support for Healthy Weight?
Yes, that's right - Healthy Cornwall has free access to a range of weight loss programmes: football, swimming, advice and support on healthy eating – loads of choice. https://www.healthycornwall.org.uk/make-a-change/healthy-eating-and-healthy-weight/healthy-weight-adults/healthy-weight-support/
Not sure you can do this on your own?
Try Step into Wellness: a coaching programme designed around you. It’s a fun and unique approach to improve your mental, physical and emotional wellness. Through a mix of one to one and group engagements, our trained team will go with you on a journey to improve wellbeing...
Step into Wellness - What's it all about?
Support Group of the week:
We are celebrating two brilliant groups this week. As there is currently no oesophageal cancer support group in Cornwall, well none that I could find, we have two sites to talk to professionals about your concerns:
OPA: The Oesophageal Cancer Patients Association: https://opa.org.uk/
Their purpose is to support patients, families and carers and to raise awareness of oesophageal cancers and their prevention. Whatever stage you’re at, the OPA is here to help you.
The Cove Macmillan Support Centre: Our phone lines remain open from 9 am to 5 pm (weekdays) on 01872 256363 or contact us via email at thecove@nhs.net for support and information relating to your cancer diagnosis, treatment and recovery. You can speak to one of our support workers on the phone, in person by appointment, by email or drop into the café, now open from 9.30 am to 4 pm (weekdays) to look at the range of information booklets.
https://www.royalcornwall.nhs.uk/services/cancer-services/the-cove/
Age UK Cornwall & IoS/Macmillan online training:
Our March dates are available to book now.
This latest newsfeed was provided by Mary Austin, Age UK Cornwall Macmillan Cancer Support Lead.
Newsfeed 04th February 2021
World Cancer Day https://www.worldcancerday.org/
Friday, the 4th of Feb, is World Cancer Day. The theme this year is Closing the Care Gap.
Today the newspapers are full of Health Secretary Sajid Javid’s declared ‘War on Cancer.' His 10-year plan will include more research, innovative treatments, improving early diagnosis and a focus on prevention of cancer through tackling the big known risk factors such as smoking and obesity.
Visit the World cancer day site. Clicking on Taking Action leads you to a wealth of information and possibilities for individual and collective action to:
Get informed about how you can lower the risks of developing cancer – for yourself and for those around you. The campaign states that one-third of cancers can be prevented.
Dispel myths about cancer to help everyone regularly check for early signs, consult their GP when they spot a change and take up their screening appointments: Cancer Research tells us that 50% of people diagnosed survive 10 years or more – but this is partly dependent on early detection and treatment.
Support each other: Cancer Research tells us that 1 in 2 of us will receive a diagnosis of cancer in our lifetime- it is likely that the other 50% will be family, friends, colleagues and our clients/customers/group members. Good conversations and appropriate signposting can make a big difference to someone’s mental health and ability to manage through their illness and treatment. Age UK Cornwall and IOS/Macmillan’s March courses on Cancer Awareness are now available to book - call 01872 266383 today.
You could download and read world Cancer Day’s How to Talk about Cancer: https://www.worldcancerday.org/materials?lang=en#4,8,5
Closing the equity gap: World Cancer Day says: ‘In healthcare, inequality refers to the uneven distribution of resources. By contrast, inequity means unjust, avoidable differences in care or outcomes.
The difference may seem subtle, but closing the cancer care gap isn’t really about simply providing everyone with equal resources. One size doesn’t fit all, and every challenge demands a different solution. Equity is about giving everyone what they need to bring them up to the same level.’
Here at Age UK Cornwall & IoS, we work to close the equity gap by making opportunities to inform all Cornwall residents of the cancer support available to them. We do this by:
- Offering Cancer Awareness Training to as many community group facilitators and community-facing staff as possible.
- Adapting our Good Conversations training to be relevant to specific community groups, such as for staff who have short contact with people.
- Taking our ‘drop-in’s to where people are, rather than expecting people to come to us.
- Making time to listen to what matters to people face to face and over the phone;
- Posting information on Cornwall Link about cancer support for the LGBTQ+ community.
- Taking resources (such as self-checking information and Macmillan Support Line information) to health and wellbeing events for facilitators to use where they feel they are relevant and wanted.
- Keeping you informed about lowering the risk of cancer through the weekly news bulletin with topics such as Dry January; being more active; taking up screening opportunities etc.
Check out the World Cancer Day Action Tool Kit and see what you could do. https://www.worldcancerday.org/materials?lang=en#4,8
This week’s Cancer Support Group…drum roll….
Foxy Ladies (AKA St Michael’s Breast Care Group)
Run by Anna Burton. Peer support for women who have or have had a diagnosis of breast cancer. Speakers, activities to ‘put a smile on women’s faces. Partners and families are invited to socials.
Group has close links with The Mermaid Centre and The Cove at Trelisk and St Michaels Hospital at Hayle.
Meetings are held on the last Friday of each month from 7-9.30 pm Hayle Day Centre Commercial Rd, Hayle TR27 4DE.Free parking
Anna Burton 01736 710678 stmichaelsbreastcaregroup@gmail.com
Finally, A Quick Ask…
Please complete our online survey
Those of you who have accessed our training in the last 12-18 months will have already or will be shortly receiving a link to our online survey. Your feedback on which of our services you have used and what you did with the information/training is crucial for us to demonstrate the impact we have had and the good use of public donations to Macmillan.
Many thanks in anticipation!
Our latest newsfeed has been written and provided by Mary Austin, Lead for Macmillan Cancer Services, Age UK Cornwall.
Newsfeed 28/01/2022
New year’s resolutions – jog on!
How are your New Year’s Resolutions going?
By now, you are no longer smoking, hardly drinking, and have surely got through the worst of the chocolate cravings? Up for another challenge? How about a charity run…now hear me out…
https://www.macmillan.org.uk/fundraise/charity-runs
Why should I join Team Macmillan?
As a Team Macmillan runner you'll receive:
- - A free Macmillan technical running top plus iron-on letters to customise your kit
- - A fundraising pack bursting with fundraising tips and tricks
- - Access to our online training materials
- - Invites to exclusive online events to support you with all elements of your training and fundraising
- - Regular e-newsletters to keep you up to date with Macmillan's news and activities
Most importantly they will provide you with a reason to keep going. You all know that you're helping improve the lives of people living with cancer. Donations make up 98% of our annual income so we simply couldn't do what we do without you. (Team Macmillan applies to over 18’s only).
Note: other less strenuous events are definitely available! Get inspiration and ideas here https://www.macmillan.org.uk/fundraise
Coming up in February:
Gear up for World Cancer day 4th Feb: World Cancer Day held every 4 February is the global uniting initiative led by the Union for International Cancer Control
https://www.worldcancerday.org/about-us
February 3rd is National Time to talk day. Linking World Cancer Day and National Time to talk day is this useful publication: How to talk about Cancer: https://www.worldcancerday.org/materials#8,5
(if difficult to find, go to World cancer day link - click through these links: materials/how-to guides/ Word Cancer Day - How to Guide - Talk about cancer – English)
February is Oesophageal Cancer Month. Oesophageal cancer is cancer that's found anywhere in the oesophagus, sometimes called the gullet or food pipe. The oesophagus connects your mouth to your stomach. We will be looking at symptoms, risks and causes, treatments and support. We will be looking at resources to lower risk, spot early symptoms and what treatment might be involved.
Cancer Support Groups:
Covid-19 has seen many of Cornwall’s cancer support groups pause. Some moved online (using Facebook and Zoom) and some used phones to keep in contact.
Here at Age UK Cornwall and IOS/Macmillan in partnership with The Cove Macmillan Support Centre https://www.royalcornwall.nhs.uk/services/cancer-services/the-cove/ we have been contacting all Cornwall-based support groups to find out what they are able to offer.
We will feature one each week on our Newsfeed. So, fanfare, please…….
This week, its Cornwall Prostate Support Association: Secretary Rhoda Kirman tells me "We support men with prostate cancer and also give support to their families. We keep in touch online with those of our members who can do so and by telephone and letters with those who are not computer literate."
The group is currently looking for a venue to meet in person.
Contact details: rhoda.kirman@gmail.com: 01872 264442
Facebook: https://www.facebook.com/Cornwall-Prostate-Support-Association-1860787660810748/
This latest newsfeed has been provided by Mary Austin, Age UK Cornwall Macmillan Cancer Support Lead. If you or a loved one needs our support, please call the Helpline on 01872 266383.
Newsfeed 21st Jan 2022
Cervical Cancer Prevention week:
The week beginning 17th of Jan was Cervical Cancer Prevention week.
Jo’s Trust says that 1 in 3 people with a cervix do not come forward for a cervical screening.
Note the word ‘people’: female to male transitioning - people still have a cervix so will still benefit from screening.
How can you help encourage people to go?
Download and print the free resources from Jo’s Trust and display them in your workplace. There are plenty here – so you can change them regularly so they do not become ‘wallpaper’.
https://www.jostrust.org.uk/shop/information
The NHS also recognize the need to be open to everyone who has a cervix, so have adjusted the information that is sent with the invitation to attend the screening:
‘You should consider having screening regardless of your sexual orientation, sexual history, or whether you have had the human papillomavirus (HPV) vaccination.If you are a transgender (trans) man registered with your GP as a female, we will send you invitations for cervical screening. If you are registered as a male you won’t receive invitations, but your GP or practice nurse can arrange an appointment for you if you have a cervix. If you are a trans woman you don’t need cervical screening.’
Cervical_screening_plain_Dec2020.pdf
Cervical Screening – easy read information
There are several booklets that can help women with learning disabilities to understand their cervical screening (or smear test) in simple words with pictures. All can be downloaded for free or contacted for a paper copy. Note – the first 4 resources assume the person is female.
Jo’s Trust: Having a smear test: what’s it all about. https://www.jostrust.org.uk/shop/cervical-screening-and-cervical-abnormalities/easyread-booklet-having-smear-test-what-it-about
Jo’s Trust also has a film: The Smear Test Film: https://www.jostrust.org.uk/information/videos/smear-test-learning-disabilities
Macmillan Cancer Support: Cervical Screening. https://www.macmillan.org.uk/cancer-information-and-support/stories-and-media/booklets/cervical-screening-easy-read
Public Health England: An easy Guide to Cervical Screening. https://www.gov.uk/government/publications/cervical-screening-easy-read-guide
Information for transitioning men (female to male) or non-binary people:
Jo’s Trust: https://www.jostrust.org.uk/information/cervical-screening/trans-non-binary
NHS: Should Trans men have cervical screening tests? ( includes video) https://www.nhs.uk/common-health-questions/sexual-health/should-trans-men-have-cervical-screening-tests/
Cancer Research UK says Trans women (i.e. assigned male at birth) do not have a cervix, so don't need to consider taking part in cervical screening. Being Trans or non-binary des not increase your cancer risk compared to the general population. https://www.cancerresearchuk.org/about-cancer/cancer-symptoms/spot-cancer-early/screening/trans-and-non-binary-cancer-screening#screening20
Support Groups: Over the coming weeks, we will be featuring Cornwall-based, as well as national cancer support groups.
Cornwall Gynae Cancer Support Group
Not currently running the Face2Face support group but they hope to resume 2022. The group is currently run by the Clinical Nurse Specialists for Gynaecology. Please contact the CNS office on 01872 252037.
The group is for all gynaecological (female) cancer patients within Cornwall that are at any stage of treatment/follow-up. The group offers peer support but also have speakers attend most meetings for health and well-being advice and support.
Let's it for this week - stay tuned in for next...
Newsfeed 18th Jan 2022
It’s Panto season!!!
Oh no it isn’t/Oh yes, it is etc.
It’s behind you!
No need to be rude! Hmm, OK, so maybe I did indulge a bit over Christmas – but does that really matter? Well, it just might…..
Recent figures from NHS Cornwall: Obesity 68.4% adults compared to a UK average of 27%
Cancer Research UK (CRUK) says that while being overweight may not cause cancer, there is evidence to show it heightens your risk of developing cancer: https://www.cancerresearchuk.org/about-cancer/causes-of-cancer/obesity-weight-and-cancer/does-obesity-cause-cancer
Losing weight or avoiding putting on more weight can help reduce this risk. CRUK has tips to help you do this.
The pandemic, the dark evenings and ‘changeable’ weather all mean that many of us have cut back on our physical activities. Too wet to garden, too cold to swim, too dark to walk, too risky for the gym. It's easy to become isolated and lose confidence to go out. Having a lower immune system due to cancer or the effects of treatment can make these feelings worse.
There are many ways back - but these are a few that the Macmillan Team has found in Cornwall:
Physical postcards:
Sign up for Dance Centre’s Physical postcards: A 12-week postal programme to keep you moving this winter. The team have worked with Macmillan at The Cove to design dance and movements suitable for people living with cancer. Help someone who is not digitally connected to sign up: https://www.dancecentred.co.uk/physicalpost - Sign up for the latest postcards by 23rd Jan
Macmillan: Physical Activity and Cancer:
There is evidence that an increase in physical fitness can reduce the side effects of cancer treatment (such as fatigue), reduce the risk of cancer reoccurrence, reduce the risk of developing other long-term conditions, and reduce time to regain physical mobility and independence. Here is a link to Macmillan’s booklet, which can be downloaded, read as an e-book or ordered as a paper copy: https://www.macmillan.org.uk/cancer-information-and-support/stories-and-media/booklets/physical-activity-and-cancer
The Cove Macmillan Support Centre:
(Treliske Hospital site, Truro). Free advice on managing breathlessness, fatigue and side effects of treatment; building your energy and fitness pre and post-treatment; support with coordination and balance. Mark, the physiotherapist tells me that as Covid restrictions ease, he will be running yoga and Thai Chi group sessions. For more information: 01872 256 363. thecove@nhs.net
Step into wellness:
Age UK Cornwall & IoS’s free programme to enable anyone to improve their mental, physical and emotional wellbeing. Based on the wellbeing principles of Connect, Be active, Take notice, Keep learning, Give; trained facilitators guide you through a series of individual and group activities. Interested in volunteering or joining – well read more here: Step into Wellness - What is it all about?
Brave the Shave is almost here!!!
Hats off (then quickly back on again, ‘cos it's very chilly!) for Brave the Shaver Sally Renshaw.
Sally is a member of the Bude Macmillan Cancer Care Committee, which have raised thousands over the years towards Cancer Support.
Sally is hoping to raise a very realistic £300 for her shave on 30th Jan.
So, in this pantomime season – shall we help her boys and girls? Mary can’t hear you….
https://bravetheshave.macmillan.org.uk/shavers/sally-renshaw
Newsfeed written by Mary Austin, Age UK Cornwall Macmillan Lead
Latest Newsfeed 7th Jan 2022
Happy New Year to one and all!
Shall we start the year with a story about kindness? Shall we set the tone for 2022?
ChemoHero
People who live in East Cornwall may have their chemotherapy at North Devon District Hospital. If they do, they are offered a Box of Kindness delivered to them on the ward by ChemoHero.
ChemoHero was started in 2012 by Lisa Wallis and her husband Rob after they arrived for Lisa’s treatment. They were unprepared for the fatigue, the long waits, hair loss and the array of medication to take home.
Each patient is offered the box free of charge. Its full of goodies (games, treats, snacks and drinks) along with practical items such as a headscarf, pill organisers and a thermometer. Boxes are made suitable for males and females.
In 2021, the group delivered an amazing 331 Boxes of Kindness to patients at NDDH.
Read Lisa’s story and more about the Box of Kindness here: https://www.chemohero.org/
Macmillan Grants
During 2021, Macmillan have given more than 60K in grants to people in Cornwall. Over 200 people benefitted in funding towards essentials and home comforts, such as heating their homes, travel to hospital appointments, bedding and clothing.
Read here about Chrissie from Newquay who used her grant for a washing machine so she didn’t have to go to a launderette or rely on friends while she was shielding. https://www.inyourarea.co.uk/news/macmillan-covid-grants-help-200-cancer-patients-in-cornwall-during-pandemic/
If you are, or know someone who is struggling financially with the unexpected costs of living with cancer, visit Macmillan Grants https://www.macmillan.org.uk/cancer-information-and-support/get-help/financial-help/macmillan-grants
call the Macmillan Support Line on 0808 808 00 00 (open seven days a week)
or contact Macmillan Cancer Services at The Cove (Trelisk, Truro) for support to apply: 01872 256373
Dry January
You have had plenty of time to polish off the last of the egg nog and sherry. The posh wine will benefit from another year in your ‘cellar’ and the rest of it makes great raffle donations…
Welcome to Dry January!
Alcohol Change, the charity behind Dry January has lots of reasons why you should try a bit of abstinence, and an array of tips to help to maintain it. https://alcoholchange.org.uk/get-involved/campaigns/dry-january
There is plenty of evidence to link alcohol and a higher risk of cancer through damage to cells and changes to hormones.
Cancer UK says: ‘All types of alcoholic drink can cause cancer. Alcohol gets broken down into a harmful chemical and can also affect our body’s chemical signals, making cancer more likely to develop’.
https://www.cancerresearchuk.org/about-cancer/causes-of-cancer/alcohol-and-cancer
Good Luck!
Christmas Newsfeed
And so this is Christmas. What have you done……?
This is a selection box of the Age UK Cornwall & IoS /Macmillan Partnership goings-on for 2021:
- 106 people attended the online Cancer Awareness training from all in areas of Cornwall
- Peer group support co-designed to keep people in touch after their training
- World’s Biggest Coffee Morning – homemade yummy things were sold to raise £180 for Macmillan
- Think Pink – coconut boobs and self-checking leaflet given to all Age UK Cornwall Volunteers & staff at Boscawen House, Falmouth, St Austell and Govenek community Hubs.
- Face 2 Face drop-in’s at Newquay Orchard, Bude Bike Night, Craft and Farmer’s Markets and the first-ever Bude Pride, to name but a few.
- 10-minute bite-sized presentations to online and face 2 face groups to raise awareness of the range of support from Macmillan
- Cancer Support Service – a listening ear and telephone support service for people affected by cancer
- Creating Cancer Caring Communities Campaign on Cornwall Link (try saying that after a few sherries!)
- Not forgetting this really informative Newsfeed on a weekly basis - highlighting what’s new and what’s still here in cancer support for the people of Cornwall.
More to come in January 2022:
If you haven’t signed up for our online training – we have more sessions in January
Underneath the Christmas Lights
Here at Age UK Cornwall/Macmillan, we like to feature local people affected by cancer. This seasonal piece comes from Pirate FM.
"Liam Howell from Redruth was just 21 when he was diagnosed with Hodgkin’s Lymphoma last year. Liam was at University in London in 2020 when he started to become unwell, he was told that the lump he found was an ear infection and after going back and forth a few times he was finally diagnosed with Hodgkin’s Lymphoma in October 2020."
'Liam started treatment at Treslike Hospital in Truro and underwent gruelling chemotherapy treatment.
He was supported by the Teenage Cancer Trust ( https://www.teenagecancertrust.org/ )who helped him and his family emotionally and physically, with things such as a hospital room, a grant for parking at the hospital and helping with travel arrangements.’
Liam and his family have an annual Christmas light display in aid of the Teenage Cancer Trust and in memory of his Papa, which completely covers the front of their house– well, see for yourself! https://planetradio.co.uk/pirate-fm/local/news/cancer-survivor-christmas-lights-switch-on/
Now that’s what I call Christmas
We all have our own ways to keep Christmas: maybe you are all about family & friends; can’t wait for the lights and tinsel; or you love something completely different.
Maybe, even anxiety, loneliness and apprehension are mixed in this Christmas? Cancer often throws a curved bauble into everyone’s plans. Hear from people affected by cancer and how they manage over the festive season at the link below:
Here are listening ears still listening over Christmas:
The Cove at Treliske remains open for appointments and drop-ins for most of the Christmas period from 9.30 am – 4.30 pm weekdays. The café will be open to eating in or takeaway from 10 am – 2 pm.
Closed on the following Bank holidays:
Monday 27th December
Tuesday 28th December
Monday 3rd January
Macmillan Support Line: will remain open as usual over Christmas and New Year. 0808 808 0000
Age UK Cornwall & IoS: Helpline: 01782 266383. Closed the Bank Holidays and weekends
Breast Cancer Support: https://breastcancernow.org/about-us/news-personal-stories/support-breast-cancer-over-christmas-new-year
Penhaligon’s Friends have complied resources of advice and activities to help when you are missing someone this Christmas. https://penhaligonsfriends.org.uk/christmas/
Whatever Christmas means to you – Here at Age UK Cornwall & IoS and Macmillan, we wish you all peace. You may have your own sayings, prayers, values that you hold on to at this time. Or maybe, you can pick a random one from the internet and pause to consider its meaning at this time, for you.
Here is mine...
If you feel like your losing everything. Remember that trees lose their leaves every year, they still stand tall and wait for better days to come.
Have a wonderful festive period one and all
Newsfeed Dec 17th 2021
Cancer Awareness Dates for your diary
If you are a regular reader of this newsfeed, you may be thinking – how do they do it? How do they know so much about days, weeks and months for each cancer awareness topic?
The answer is simple – the magic of the internet. Here is where we find resources to help keep you informed:
Cancer Research UK has a handy calendar: https://www.cancerresearchuk.org/node/330411
If you are registered with Be-Macmillan, you can also find links to resources for a particular topic, month by month: https://be.macmillan.org.uk/be/s-536-cancer-awareness.aspx
Looking slightly wider than Cancer Awareness, we also use the NHS National Campaign Calendar - this is a link to campaigns with guidance about risk reduction and information for particular communities: https://www.nhsemployers.org/events/calendar-national-campaigns
Heads Up
Dry January is coming around again! (Did I spoil the mood?). We think that https://alcoholchange.org.uk/get-involved/campaigns/dry-january sums up the campaign beautifully "It isn’t about giving anything up. It’s about getting something back. Get your fun back. Get your energy back. Get your calm back."
Watch this space for more news...
Spotlight on The Cove Macmillan Support Centre: RCH Treliske, Truro.
https://www.royalcornwall.nhs.uk/services/cancer-services/the-cove/
A place for people affected by cancer to come for information and support. Appointments are needed for the specialist services (dietician; psychology; physio; counselling). However, the café is open for drop in’s and you can pick up paper copies of the Macmillan information leaflets. Family and friends, who are carers, are invited to ring or drop in to speak to the Managers or Support Workers. Bear in mind that the psychology support is only open to the person who has the diagnosis. Carers can contact their GP to get a referral to Outlook South West if they feel they need more support.
Keep an eye on the events: Wig fitting, Look Good Feel Great via Cornwall Link: https://cornwall-link.co.uk/
Cornwall Hospicecare’s Community services:
Cornwall Hospicecare has revamped their website: https://www.cornwallhospicecare.co.uk/
Scroll down to the Community Services button. Here you will find, amongst other treasures:
Listening Ear Service for people recently bereaved – including if you have lost a much-loved pet.
Neighbourhood Hubs: help for people living with a palliative/terminal or progressive illness to retain and regain their independence
Useful Links Directory: quick-find lists of national or County-wide organisations which support people with palliative/terminal illnesses.
Virtual Community Friendship Café: a Facebook page where you can post and find site-specific and smaller organisations, groups and activities.
That's it for this week, be sure to check out our Christmas Eve newsfeed...please stay safe whilst enjoying the festivities.
Latest News - 10th December 2021
Protect yourself from flu
Cancer Research UK advises us: "Cancer or its treatment can lower your resistance to infection and make you more likely to catch flu. After cancer treatment, your resistance to infection might be low for some months or years."
If you do get flu and have low immunity, you are more likely to become very ill. For example, you could develop a complication such as a chest infection (pneumonia).
The flu vaccination makes it less likely that you will catch the flu. If you have had the vaccine and do get flu, there is a greater chance of a quicker recovery.
The flu vaccination is free to people who are at increased risk of catching the flu. This includes those people who have low immunity due to disease or treatment, such as cancer treatment.
Check with your GP if you should have the flu vaccination and whether you qualify for a free vaccination.
You can read more here: https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/flu-vaccine
Human Rights Day
Friday, the 10th of December, is International Human Rights Day. This year’s theme is EQUALITY - Reducing inequalities, advancing human rights. To celebrate this day, we bring you good news from Cancer Research UK on The Disability Discrimination Act, Equality Act and cancer.
The Equality Act considers a diagnosis of cancer as a disability. You don’t have to have symptoms or consider yourself disabled by your cancer to be covered. But the Act gives you important rights, such as:
· You can negotiate for reasonable changes in your work or workplace such as time off work for treatment and recovery or flexible hours.
· Providers of any services you might use have to make sure you can use them in the same way as people without a disability, for example, supermarkets given help with your shopping
· If you have a type of cancer that statistics show is either curable or manageable, it might be against the law for the life insurance company to refuse you insurance or charge you a higher premium For more information: https://www.cancerresearchuk.org/about-cancer/coping/practically/the-disability-discrimination-act-equality-act-and-cancer
And Macmillan short guide to your rights at work if you are affected by cancer: https://www.macmillan.org.uk/_images/short-guide-rights-at-work_tcm9-317971.pdf
You can also call the Macmillan Work Support Helpline on 0808 808 0000
Get Checked
This is the advice from Mark Wright, TV presenter and former reality TV star after having a tumour removed from his armpit on Wednesday.
Mark spotted the lump and went to his GP immediately. He went back when he noticed the lump growing and was referred to a specialist.
‘’Nothing in life is more important than your health. Get checked, check yourself and make sure you take good care of yourself." TV and social media campaigns are helping to make us all aware of the typical early signs and symptoms of cancer. We are encouraged to go to our GP as soon as we notice a change.
But would we? We are also very aware of the pressures on GP’s surgeries and it is possible that we might ‘wait and see if it gets better’, dismissing pain or a lump as ‘just a little…’
Here is the advice from Macmillan:
- You are not wasting your GP’s time by getting your symptoms checked.
- If you need support or just want someone to talk to, call Macmillan free on 0808 808 00 00.
- You can also download our booklet on the signs and symptoms of the most common cancers for men and women.
- GP receptionists are instructed to triage patients to assess the degree of urgency for appointments. You know your body best: if you think the change you notice is worrying, then be assertive and state why you think you need to be seen by a doctor.
- If you would prefer to see a GP of the same sex as yourself – please state this when booking.
- If you are still hesitant and worried you might be wasting the doctor’s time, all Boots Chemists in Cornwall have a Macmillan trained pharmacist – they can discuss your symptoms and advise you.
Mark Wright spotted the lump and went to his GP immediately. He went back when he noticed the lump growing and was referred to a specialist.
‘Ok, it’s been a tough call whether or not to speak about this.
One part of me wants to keep something like this private and the other part is thinking, if I can help/potentially save 1 person, well…. this is the right thing to do’
Read more about Marks’s diagnosis and treatment here: https://www.bbc.co.uk/news/newsbeat-59585278
Latest Newsfeed - 3rd December 2021
Living with Cancer at Christmas
Becky Johl, lead nurse in oncology and chemotherapy at Charing Cross Hospital, shares Macmillan Cancer Support’s top tips for how to make the festive period more manageable:
1. Talk it over: have a chat with the person living with cancer to find out what kind of day they would like to have: what do they feel they can manage.
2. Give practical help. A common effect of cancer and its treatments is fatigue: are there things that you can do to ease some of the tasks e.g. putting up the decorations; prepping the food. Can you offer lifts to the hospital (treatment or for family visiting) where there will be reduced bus services?
3. Consider a thoughtful gift e.g. v-shaped pillow; new bedding; a pampering session; audiobooks.
4. Be flexible about food: ask the person for their preferences and let them choose their own portion size.
5. After Christmas, keep in touch: January can be a bit blue. Have some plans to look forward to.
Becky has more tips for people who have a cancer diagnosis here: https://www.imperial.nhs.uk/about-us/blog/living-with-cancer-at-christmas
Breast Cancer Now
Introducing Lauren, a mother of four diagnosed with breast cancer, talking about her approach to Christmas: https://breastcancernow.org/about-us/news-personal-stories/my-tips-managing-festive-season-breast-cancer
Lauren’s top tips focus on self-care and being kind to yourself.
Online Training from Age UK Cornwall/Macmillan Partnership
We have 1.5 hours of online sessions to enable you to be more confident and knowledgeable to have good conversations with people affected by cancer.
Find out more here:
Cancer Awareness Workshops January 2022
Get Connected for Christmas
Perfect pressie: For people who are likely to be spending more time at home due to their cancer or hesitancy about mixing with other people, how about a laptop or tablet to get connected.
· Shop online
· Zoom call friends and family
· Catch up with the local and national news
· Check local weather, buses and what’s on in your area
Not sure they would be confident? Digital Inclusion Cornwall offers FREE sessions to get people started and confident in any aspect of IT. Sessions are individually focused on what the person wants to know and are able to do.
Sessions can be planned to fit with people’s cancer treatment and effects: timed for when people are at their best.
So, if you know someone who might benefit from IT help, talk to them about how Digital Inclusion Cornwall could help them get connected, then contact Digital Inclusion Cornwall.
Send an email with the person’s phone number, the name by which they wish to be addressed; what they want to be able to do, and state that you have their permission to refer them: digitalinclusion@cornwall.gov.uk.
Support Groups in Cornwall for people affected by Cancer:
Macmillan Cancer Support understands the need for good quality peer support and the benefits it brings to people affected by cancer. They seek to facilitate the start-up, development and sustainability of independently run initiatives wherever possible. The support offered includes:
· Advice, guidance and support to enable the setting up and development of a diverse range of peer support and self-help groups.
· Access to a support grant to provide funding to set up and develop groups to meet the needs of members.
· Signposting to relevant training/learning and development for group leaders to encourage good practice and confidence.
· Opportunities for peer support group leaders to come together as share and learn networks.
If you’re interested in accessing the support grant, or any other support please contact our local Macmillan Engagement Lead - dicharlton@macmillan.org.uk
Latest Newsfeed - 26th Nov 2021
Too early to talk about Christmas? NAH…. Let’s go….
Looking for Christmas gifts?
The search is over: Macmillan Christmas Gift Shop: https://shop.macmillan.org.uk/collections/christmas-gifts Books, family games, doggie doorstops, even an elf T-shirt – something for everyone!
Talking to children about cancer
This month, Mary Austin, our Macmillan Coordinator was invited to give a talk to a women’s group on how to talk to children about cancer. Here’s some good advice she found:
Macmillan: Talking to Children and Teenagers: https://www.macmillan.org.uk/cancer-information-and-support/diagnosis/talking-about-cancer/talking-to-children-and-teenagers
Cancer Research: Talking to children: https://www.cancerresearchuk.org/about-cancer/coping/emotionally/talking-about-cancer/talking-to-children
Cancer Council: Talking to Kids about Cancer: This is a very comprehensive guide that includes scenarios for each age group, tips on noticing behaviour change and how to manage it. https://www.cancer.org.au/assets/pdf/talking-to-kids-about-cancer-a-guide-for-people-with-cancer-their-families-and-friends
A couple of online apps:
Kids Guide to Cancer: https://www.campquality.org.au/how-we-help/find-a-program/kids-guide-to-cancer
Kooth: www.kooth.com
Books for children: There is also a range of books that adults can use to support children’s understanding of cancer. Cancer Research has some advice: https://www.cancerresearchuk.org/about-cancer/coping/emotionally/talking-about-cancer/talking-to-children
Carers Rights Day: 25th November 2021
Carers UK states that 1 in 8 of us are unpaid carers. You may think the care you give is all part of your relationship. When your own needs start to not just take a back seat but never actually make it to the car – you know you need a bit of support yourself!
First stop: contact Cornwall Carers Service and talk about your situation. They will help you think about how much support you need and what the benefits would be for you and the person you care for.
Carers have rights: Unpaid carers have the Human Rights we all have. Carers also have rights in law at work; for an assessment of their own needs by the Council; to be heard by the Council in any decisions about the person they support.
Read Macmillan’s support for unpaid family carers of people living with cancer here
Our Latest Newsfeed - 19th of Nov
World Pancreatic Cancer Day:
the third Thursday of November is the annual World Pancreatic Cancer Day. You may have noticed prominent landmarks near you, lit up purple to raise awareness. Don’t worry if you missed it, as the whole of November is Pancreatic Cancer Awareness Month.
So, here’s the important stuff: Pancreatic Cancer UK states that currently, half of all people diagnosed with pancreatic cancer die within 3 months. This makes it vital that people get an early diagnosis.
Macmillan describes Signs and Symptoms of Pancreatic Cancer. Most of them are not unusual and could be signs of other less serious conditions, or people may only have one symptom e.g loss of appetite; frequent indigestion; feeling very tired. If symptoms continue it is best to see your GP.
In 2019, Pancreatic Cancer UK was invited to run a collection and information day at St Pancras Station in London ( see what they did there: Pancras/pancreatic). They ran a quiz, including the questions:
‘Do you know where your pancreas is?’
Do you know where yours is and what it does? Macmillan knows
And how to keep it healthy? Lowering your risk of pancreatic cancer
Movember News:
How are those moustaches coming on?
Movember:’ Did you know…
Globally, men die on average 5 years earlier than women, and for reasons that are largely preventable. - which means that it doesn’t have to be that way. We can all take action to live healthier, happier and longer lives.
For men or for the men in your life, be they partners, children, siblings, friends, neighbours or whatever the relationship, Movember have 5 things we should all know and do to improve men’s health.
1: Spend time with people who make you feel good
2. Talk more
3. Know your risk
4. Know they nuts
5. Move more
National Mouth Cancer Month
November is also National Mouth Cancer Month, Macmillan state:
Mouth cancer (also known as oral cancer) is one of the most common types of head and neck cancer. It can start in any part of the mouth. The most common symptom of mouth cancer is an ulcer or sore that does not heal in three weeks. This may be in the mouth or on the lip.
For more information about self-checking; risk factors; symptoms visit the Mouth Cancer Foundation. This site includes some great downloadable information posters on self-checking - ideal for printing and popping up in your office or community space.
Mouth cancer treatment can cause changes to a person’s facial appearance. Changing faces is an organisation that supports people with a visible differences (including burns, scars, eczema, palsy and many more). They offer peer group support and advice on managing confidence, coping with people’s reactions, relationships, work, mental health and advice for children and young people. Visit the link above to find out more.
That's it for this week - pop back next week to see what's on our agenda.
Our Latest Newsfeed - Friday 12th Nov
Transgender Awareness Week: Did you know - it is Transgender Awareness Week between 13th- 19th Nov: Macmillan, in their research The Emerging Picture on LGBT People with Cancer use this definition:
Transgender: An umbrella term inclusive of anybody whose gender identity differs to a greater or lesser degree from the gender assigned at birth. Trans men are people who were assigned female at birth and now identify as men; trans women are people who were assigned male at birth and now identify as women. Transexual refers to the group of people who have undergone hormone therapy or gender reassignment surgery to change their gender from the one they were assigned at birth.
Some more important guidance here...
Breast Cancer can affect people of any age and any gender: get information on checking your pecs/boobs/chest from Coppafeel’s Brazette information for trans and non-binary people here
Trans women may be affected by prostate cancer: find out more here
Age UK have information and advice on growing older for trans people here
The LGBT Foundation have a number of guides for Trans people on topics such as safer sex, reporting hate crimes and your rights at the GP.
More news in November...
Movember: Male risk of Skin Cancer
With the weather becoming a bit chilly and everyone wrapping up, you may think it an odd time to be thinking about skin cancer. Cancer Research UK state that in the past 10 years, male skin cancer has increased by 50%. Skin cancer is more common in males than in females; and is more common on their torso, possibly due to going shirtless in the sunshine. Male skin cancer is likely to be diagnosed later than in females – possibly because they may go unnoticed on a back.
Macmillan have a booklet Understanding Skin Cancer and information about lowering your risk of skin cancer here
Update on Clair Day’s Brave The Shave
See pictures of Clair’s worried face as she braves the shave in aid of Your Voice and Bowel Cancer UK. Don’t panic – she is smiling at the finish line!
Well done Clair – VERY brave.
Watch the video and please donate via Clair’s Facebook page: https://www.facebook.com/clair.leppingtonday
Our latest Newsfeed - Friday 29th October
Macmillan Partners
We Are Undefeatable
Age UK and Macmillan are delighted to have partnered with 15 leading charities on We Are Undefeatable, a campaign aimed to help people living with cancer, and other long-term health conditions, to become or stay physically active.
As we head into the colder months, we want to encourage people to keep moving to benefit both mentally and physically. Physical activity can improve quality of life and reduce anxiety and depression. Being active before, after and during cancer treatment can also reduce tiredness and strengthen muscles, joints and bones.
We Are Undefeatable encourages people to exercise in a way that works for them. You can signpost your patients to free resources, which include: video workouts, tips to get started, and a downloadable leaflet on ways to stay fit at home.
Don’t forget Macmillan’s booklet: https://www.macmillan.org.uk/cancer-information-and-support/stories-and-media/booklets/physical-activity-and-cancer
We have a few copies in the office if you would like one.
Judy Clapp our Macmillan Nurse Lead Trainer will run a 1-hour workshop online for a group of people. Email Kerstin for details: Kerstin@ageukcornwall.org.uk
Moving into November
Taking us from October into November is International Brain Tumour Awareness Week (Saturday, Oct 30th to Saturday, 6th November)
Macmillan has some plain speaking information to enable us all to be more aware of the signs and symptoms, the types of tumours and the support available.
https://www.macmillan.org.uk/cancer-information-and-support/brain-tumour
More in November:
November is a busy month for Cancer Awareness:
Movember is all about men’s health: focusing on men’s mental health; prostate cancer and testicular cancer. An opportunity for all of us to grow a moustache!
‘Whatever you grow will save a bro’
Mouth Cancer: Its mouth cancer action month. Look out for info on oral health.
Pancreatic Cancer: The third Thursday of November is World pancreatic cancer day.
Our latest Newsfeed - Friday 22nd October
Boots and Macmillan together
Boots are launching a new campaign to raise awareness of their partnership with Macmillan and the amazing work Boots Macmillan Information Pharmacists (BMIP) and Boots Macmillan Beauty Advisers (BMBA) do to help people living with cancer. People can visit in-store or book virtual consultations via telephone or video to speak with a pharmacist or a beauty adviser. Boots also offer a range of services to help people with cancer with practical things such as safely collecting prescriptions to helping people feel more like themselves again.
You can easily signpost your patients to the services online where they can book an appointment
Breast Cancer Awareness Month
October is breast cancer awareness month...
This week we feature ‘easy read’ materials. ‘Easy read’ describes written material that has a clear and simple layout. It uses cut-down information in everyday language. There is one idea per sentence. Pictures are used where they are helpful. It is usually on A4 size paper. It is designed for people with a learning disability, people who are new readers, people who are not familiar with English and anyone who experiences difficulties with processing.
Macmillan
Breast care for women, easy read: https://www.macmillan.org.uk/cancer-information-and-support/stories-and-media/booklets/breast-care-for-women-easy-read
We have a few copies of this in the office (in Truro, Cornwall) if you would like one.
NHS
Breast Cancer and How to Spot it: https://www.wsh.nhs.uk/CMS-Documents/Patient-leaflets/BreastCare/6155-1Breast-Cancer-and-how-to-spot-it-easy-read-leaflet.pdf
Breast Cancer in men and how to spot it: https://www.cntw.nhs.uk/content/uploads/2018/05/Breast-cancer-in-men-1.pdf
Public Health England: Breast Cancer Screening film and East Read Guide for women with learning disabilities: https://www.through-the-maze.org.uk/breast-cancer-screening-film-and-easyread-guide-for-women-with-learning-disabilities/
Beyond Words: Just pictures. Topics include: Getting on with Cancer; Going into hospital.
Thank you for helping others – don’t neglect yourself!
Those of us in the health and social care sector devote our time, our energy and our thoughts to supporting other people. We may also be family carers. It is all too easy to put our own needs way down the list of priorities.
**Time to put your own needs equal to everyone else.**
Every first aid course starts by telling you to look after your own safety first.
Last week we looked at self-checking. 5 minutes when you are in the shower or bath. Done.
This week, we look at what lifestyle changes can reduce your risk of developing breast cancer.
Age is the biggest risk – nothing we can do about that: not even lying about your age will help!
Genetics is a risk factor – if you have close relatives who have developed breast cancer, tell your GP.
The three risk factors we can lower are as follows:
Weight: Macmillan advises ‘The risk of breast cancer is higher in women who are overweight, particularly after the menopause. This is because being overweight may change hormone levels in the body.’
Smoking: Increased risk seems to be linked with starting smoking at a younger age and smoking for a longer time.
Alcohol: Regularly drinking alcohol increases your risk of developing breast cancer, but is reduced if you keep within the recommended guidelines. More information from Macmillan can be found here: https://www.macmillan.org.uk/cancer-information-and-support/breast-cancer/risk-factors-for-breast-cancer
Well, as if by magic, October is also Stoptober ( smoking cessation) and Sober October.
4 C’s Campaign Newsfeed Friday 15th 2021
Coppafeel https://coppafeel.org/
On the run-up to Wear it Pink (Friday, Oct 22nd), we feature another national breast cancer charity: Coppafeel.
In the UK, 1 in 7 women will experience breast cancer in their lifetime and 400 men are diagnosed every year.
‘Want the lowdown on why you should check your boobs or pecs (guys we’re talking to you too), guidance on how to coppafeel or what to do if you find something unusual? Well you’re in the right place!’
Diagrams, videos, text reminders – Coppafeel has your back (or should that be your boobs).
If you are part of a social group or are in touch with schools or colleges, you may be interested in downloading the resources pack which is a summary of all the support available from Coppafeel.
Wear it Pink Day
Friday, the 22nd of October is Wear it Pink Day.
For the Age UK Cornwall/Macmillan Team, it is not an office day. However – don’t despair. Thursday 21st October, we will drop by your office at 11ish and 1ish with boob themed cake and info on self-checking. Use the Coppafeel and Breast Cancer now websites if you would like to donate or find out more.
Coppafeel: https://coppafeel.org/ Breast Cancer Now: https://breastcancernow.org/
Want to do some fundraising of your own – or buy a funky T-shirt? Visit the Wear it Pink website https://www.wearitpink.org/
News from Macmillan - 07.10.21
Since the start of the pandemic, Macmillan has been campaigning for UK Governments to make sure cancer does not become the forgotten ‘C’. We are now launching the next step of the campaign, calling for urgent investment for cancer nurses across the UK. This is crucial to delivering personalised cancer care.
The new research report, Cancer nursing on the line, highlights that across the UK a total investment of around £170 million is needed to fund the training costs to create nearly 4,000 specialist cancer nurses by 2030 to provide the care people need.
World’s Biggest Coffee Morning
Across the Country and beyond, people are hosting, baking and eating in support of Macmillan’s annual World’s Biggest Coffee Morning.
Here at Age UK Cornwall/Macmillan, we held a take-away cake-away: A morning of opportunity to grab a slice of yumminess and raise funds for Macmillan.
Lemon, chocolate, banana, apple and peanut butter all featured in an array of loveliness to rival any Bake-Off.
We are grateful to colleagues at Age UK Cornwall and The Old Cheese Shop Truro for donations which raised over £200.00
Special mentions for other Cornish Events
Perranporth BlueTits - (ladies open water swimming group) held a coffee morning at The Watering Hole, Perranporth on Saturday 25th.
House of Chaplin, Bude, held a coffee morning and evening bash, resulting in over £1446.77 raised for Macmillan.
We would like to say thank you and please give yourselves a round of applause.
The latest information from Macmillan Cancer Support
Breast Cancer in women: information on risk factors, symptoms, types, treatments https://www.macmillan.org.uk/cancer-information-and-support/breast-cancer
Breast Cancer in Men: men develop breast tissue, but not the hormones which are needed to develop full breasts: therefore, breast cancer is far rarer in men. https://www.macmillan.org.uk/cancer-information-and-support/breast-cancer/breast-cancer-in-men
Breast cancer is higher for trans women (people who were assigned male sex at birth and who identify as women) who are undergoing hormone therapy. Transgender women have an increased risk of breast cancer.
Royal Cornwall Hospital Breast Care Information
‘All breast clinic and diagnostic work is carried out at The Mermaid Centre, a purpose-built diagnostic facility at the Royal Cornwall Hospital in Truro. The Mermaid is home to the Cornwall Breast Screening Programme (NHS BSP) and the Oncoplastic Breast Unit. They also monitor patients with a family history that may be at higher risk of developing breast cancer. It was one of the first units in the UK to have a fully digitalised mammography screening service.’ https://www.royalcornwall.nhs.uk/services/breast/
Breast Cancer Awareness Month - Breast Cancer Now has information on how to get involved with the following:
Campaigning Topics: For example, getting women access to necessary drugs and personal stories to be fed back to NHS to improve support and research. Fundraising: Such as Wear it Pink Day. Research: For example, generations studies; Male breast cancer; tissue bank for researchers.
Click here to get involved and join in
More news - Wear it Pink Day
Wear it Pink Day is Friday the 22nd of October 2021 - If there ever was a time to put on that pink top, proudly drape that pink feather boa around your neck or pull up those pink socks, it's now. Raise money and join in the fun.
Please help make life-saving breast cancer research and life-changing care happen. https://www.wearitpink.org/about
Check out our latest news for October
Did you know that October is Breast Cancer Awareness Month?
During October, we will be posting information on aspects of breast cancer: from self-checking for early signs; breast cancer in men and in trans women; what support is available in Cornwall and further afield and how to get involved with campaigning, research and fundraising.
Starting us off this week
Early detection
1. Here is a visual guide on self-checking from Breast Cancer Now - https://breastcancernow.org/information-support/have-i-got-breast-cancer/signs-symptoms-breast-cancer
2. Here is further information and booklets on breast care (including an easy-read version) to download or order from Macmillan - https://www.macmillan.org.uk/cancer-information-and-support/breast-cancer/signs-and-symptoms-of-breast-cancer
We are extremely proud to share our Macmillan & Age UK Cornwall Partnership Report 2021.
Please find the full report here - which provides an overview of our impact made across Cornwall. The report also showcases several client and staff stories, key programme insights and the importance of our partnership to those affected by cancer.
The report was prepared and produced by our Programme Lead, Maria Faulkner - supported by our Community Wellbeing Manager, Kelvin Yates and our Communications Lead, Lee Davies.
Please click on the title page to download or view the full report as a PDF. Alternatively, you can also download the full report using this link or on the document download section below.
Men’s Cancer Support - further afield:
LGBT Walnut: this is an independent support group for any LGBT person affected by prostate cancer. Includes support for Trans people (male to female). Support to talk openly without worrying about the reaction of others. https://www.lgbt-walnut.org.uk/
Live Through This: is a cancer support and advocacy charity for the LGBTIQ+ community. https://livethroughthis.co.uk/
Prostate Cancer: Information and support for men and their families. 1 in 4 black men will get prostate cancer: that’s twice the risk for all men – and no one knows why. https://prostatecanceruk.org/
Penile Cancer: Information and support from Macmillan: https://www.macmillan.org.uk/cancer-information-and-support/penile-cancer
Breast Cancer in Men:
Macmillan Cancer Support: Breast cancer in men can be rare, however, the risk increases with age and if you have a family member who was diagnosed. https://www.macmillan.org.uk/cancer-information-and-support/breast-cancer/breast-cancer-in-men
Coppafeel: chest checking guidance and support, non -binary specific. https://coppafeel.org/the-brazette/resources-for-trans-people/
What’s happening in Cornwall?
Mary Austin, Macmillan Community Navigator, has been busy researching what events, support groups and clubs are on in Cornwall, find out more below:
- Age UK Cornwall and Macmillan will be at Bude Bike Night on Weds 15th Sept. Mary Austin will be there with Macmillan information – or you can join her for a chat. The event is based at Bude Wharfe bt the Lock Gates Tea Room from 7.30 pm. https://cornwall-link.co.uk/activity/macmillan-at-bude-bike-night
- Cornwall Prostate Cancer Support Group: https://prostatecanceruk.org/get-support/find-local-support/cornwall-prostate-support-association
- Pants Cancers: ‘We offer the CancerRehab Program at the Waterside Centre in Penryn. This is funded by our 4 charity shops in Falmouth and is free to cancer patients. https://pantscancer.co.uk/
- Chestnut Appeal: based at Derriford, raises awareness and gives support for testicular and prostate cancer across the region. https://chestnutappeal.org.uk/
- Man Down – supporting men’s mental wellbeing in Cornwall: Man Down is a Cornwall based non-profit Community Interest Company. They run safe talking and listening spaces to help meet the current emotional and mental health needs of men who struggle to cope with the pressures facing them in our modern society. Fortnightly meetings, events and challenges in a Covid secure environment. https://www.mandown-cornwall.co.uk/
Male Cancer Awareness Week 2021 is 13th -19th September
Did you know that this Week is Male Cancer Awareness Week? Together, we can raise awareness of male cancers to thousands of men and their partners. Orchid (Fighting male Cancer) shared this message about the importance of highlighting Male Cancer Awareness:
‘Each year we highlight health messages about the three male-specific cancers to improve awareness and give opportunities for men, families and healthcare professionals to learn about male cancer and improve their understanding of the signs and symptoms. Through the promotion of our services and resources, we hope men and their families will gain a better understanding of where to go for help and treatment’.
https://orchid-cancer.org.uk/awareness-education/male-cancer-awareness-week/
Here you can view our latest Campaign News
Pam’s story has been shared by our Macmillan Community Navigator's and is an example of how digital solutions, when complemented with person-centred and specialist support, can reduce social isolation and break down digital barriers.
You can support the 4C's Campaign in a variety of ways...
Add it to your Best Match settings.
Get involved in activities, share on social networks, or yourself, including any Cancer Support Services.
If you are running an event that would benefit people affected by cancer in Cornwall, please create one in Cornwall Link.
Join the Cancer Awareness Training Project Team on Cornwall Link to connect with other people whilst you train (details to follow).
Become a Digital Volunteer with Age UK Cornwall and the Age UK C&IOS Macmillan Partnership Team to help gather, enter and edit information on Cornwall Link.
Volunteer for us.
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Members supporting the campaign
I am the Entrepreneurship Facilitator for the West of Cornwall and I work for the School for Social Entrepreneurs in Cornwall. We support people to develop their business skills and grow, both personally and professionally, to make a profound i ...
View profileI am a Cancer Care Co-Ordinator with North Kerrier East Primary Care Network, covering Leatside Surgery (Redruth) and Veor Surgery (Camborne
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Colour Wellbeing CIC
Colour Wellbeing CIC was set up in 2019 to support individuals, families & groups in local communities. Our vision is to make a sustainable impact on improving quality of life for those with ill health & their families and to promote positiv ...
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