Cancer support network - East Lothian

An East Lothian resident is currently cycling 170 miles to the most northerly part of the UK, raising money for Brain Tumour Research.

Michael Ellis, of North Berwick, set off last Friday night and is currently on Mainland, Shetland, with his final destination Burrafirth, on Unst, the island where he spent his childhood.

Michael, who has no long-distance cycling experience, is due to attend his school reunion in Lerwick this Friday, and made the decision that, rather than fly there, or get the train and ferry as he usually does, he would do the journey on his mountain bike (in addition to the ferry from Aberdeen)!

His epic journey has not proved easy so far, as he has faced punctures and sleepless nights. And, currently in Shetland, the last 60 miles of his ride north is facing strong westerly winds.

To find out how he's doing, and to donate to Brain Tumour Research, visit

Ultima Thule cycle for Brain Tumour Research Help Michael Ellis raise money to support Brain Tumour Research

Great news for those in the west of East Lothian who have been affected by cancer and would like some local support!

A cancer peer support group is being launched in Prestonpans Library, meeting on the last Monday of the month at 11am.

The first session is next week, on Monday 27th May.

If you know of anyone in the area who'd like to pop along to this free support group, please share this info.

For more details, email [email protected]

Venturing Out is an outdoor company based in East Lothian, and it has recently received funding to run a year of Adventure Wellbeing activities for unpaid adult carers who look after someone aged 18+.

These activities will offer free access to a range of adventurous activities that will be offered throughout the year.

The relevant information is on its website at https://www.venturingout.org.uk/carers-adventure-group.

A registration form for the activities can be found at https://docs.google.com/forms/d/e/1FAIpQLSds5JOqnOHHNvES9H8D1kKamS71vPDTQVboYqp69RuBI5kSjg/viewform?usp=sf_link

Are you in your 20s, 30s or 40s with cancer?

Join Shine Cancer Support for its one-day "shake up" event in Edinburgh.

Join others who understand what you're going through this Saturday (23rd March) from 10am to 4.30pm in Maggie's Edinburgh (next to the Western General).

The group say: "You'll have a chance to meet other young adults coping with cancer, connecting with a crowd of others who 'get it'. We'll have discussions on topics that matter (such as living with uncertainty), as well as good lunch and snacks."

To find out more about the event, email [email protected]

To find out more about the charity, see shinecancersupport.org/about/

Interesting news for those who can't use HRT (hormone replacement therapy).

And especially interesting for those who can't use HRT but suffer menopausal hot flushes.

A new medication, fezolinetant, provides symptom relief for hot flushes and night sweats.

It's useful for women who’ve been diagnosed with hormone-positive breast cancer because it doesn’t contain hormones.

Fezolinetant is a non-hormonal menopause drug that acts directly on the brain to prevent hot flushes. It works by blocking a brain protein called neurokinin-3, which plays a unique role in regulating body temperature in menopausal women.

The cost of the medication is anticipated to be in the region of £45-50 per month but pharmacies are likely to include additional dispensing fees, which are variable.

Fezolinetant was licensed by the MHRA (Medicines and Healthcare products Regulatory Agency) in December and is available on private prescription now. Find out more from the British Menopause Society here

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Come and meet Cancer Support Network East Lothian NOW at the Independent Living event in St Andrew Blackadder Church!

We’re here until 2pm, along with
• Care & Repair East Lothian
• Age Scotland
• Carers of East Lothian
• Citizens Advice Bureau
• Alzheimer Scotland
• Housing Options Scotland
• East Lothian Council Housing

And more!

Learn about what support and services are available to aid independent living as you age.

Come along and chat to us at the Independent Living event in St Andrew Blackadder Church on 2nd March.

The event, organised by East Lothian Council Housing Services and Care & Repair East Lothian, will feature an information session on accessible housing, care and living independently for those over 50 and/or living with a disability.

Speakers include
• Care & Repair East Lothian
• Housing Options Scotland
• Age Scotland
• Carers of East Lothian

And stalls include us! And also
• Health & Social Care Partnership
• East Lothian Council Housing Services
• East Lothian Housing Association
• Changeworks
• Citizens Advice Bureau
• Sight Scotland & Sight Scotland Veterans
• Alzheimer Scotland
• EARS Advocacy

This will be a useful event to find out more information about living independently as we age and if we need support.

"Oh, that's so nice to have had such a laugh!"

Laughter is the last thing you think of when you have a cancer diagnosis.

Having fun might not be at the top of your agenda when you're going through cancer treatment.

But both laughter and fun are on offer at our monthly peer support sessions in North Berwick Library.

Yesterday's meeting saw open honesty about our fears, news of our treatments, shared experiences and – perhaps unexpectedly – a lot of laughter, prompting that quote at the top by one of our visitors.

It was a busy group, with lots of chat and free refreshments.

Please, if you or anyone you know are going through cancer, do consider just dropping in.

You don't need to book or tell us you're coming – just pop by for totally non-judgmental support and understanding.

A University of St Andrews Masters student is conducting research into the experiences of cancer survivors who navigated cancer treatment during the pandemic.

For her dissertation, anthropology student Alicia Yin wants to gain insights into the unique challenges and experiences that individuals may have faced during their cancer treatment amidst the pandemic.

She says: "I am interested in understanding how the pandemic may have influenced patients' treatment, recovery, and overall experience.

"I am planning to use photography to collaborate with survivors to capture meaningful objects or spaces that played a significant role in their cancer recovery journey. I believe that visual storytelling can be a unique and powerful way of understanding and portraying people’s personal experiences."

Informed consent and anonymity of all participants is guaranteed. Research will be undertaken only following approval by the University's Ethics Committee.

If you would be happy to help Alicia in her research, email her [email protected] or message her on 07392 801531.

If you have/have had/ or have been affected by cancer in any way and would like some emotional support, join us in North Berwick Library this Thursday 8th February from 10.30am.

We are fellow patients who understand the whole deal.

Free tea/coffee/refreshments provided.

CSNEL members were honoured to add some of the first stitches to artist Andrew Crummy's "cancer tapestry" back in 2019, when Gillian Hart, of East Lothian Libraries, brought it along to one of our support sessions.

And now it and the artwork Andrew produced for it will be on display this Saturday, 3rd February along with a documentary about its creation.

Sunday is World Cancer Day, and Macmillan Cancer Support will be airing “A Good Thing to Do: Andrew Crummy’s Cancer Tapestry”, a documentary charting the inception of the tapestry, in Edinburgh.

Macmillan will also be aiming to gather 100 stories in tapestry, creating a large art installation as part of its fundraising efforts.

Visit the exhibition between 1pm and 4.30pm this Saturday at:
Cornerstone Centre
St John’s Episcopal Church
Princes Street
Edinburgh
EH2 4BJ

https://theedinburghreporter.co.uk/2024/02/screening-of-the-cancer-tapestry-documentary-in-edinburgh-this-weekend/

A very honest article by East Lothian-based journalist Glenn Campbell on his brain tumour diagnosis and its impact on his life.

BBC's Glenn Campbell: My brain cancer diagnosis was a total shock BBC Scotland's political editor says the discovery of a tumour was devastating - but that he's been lucky.

Our first peer support meeting of 2024 this morning in the lovely, friendly, warm North Berwick Library.

It was nice to see members this New Year, as we talked about our experience of cancer, the stress of treatment choices and how we cope with anxiety.

*All* those affected by the illness – whether patients or loved ones – are welcome to the group, on the second Thursday of every month at 10.30am.

We look forward to seeing you on 8th February.

If you or a loved one has had a cancer diagnosis and would like to chat, be heard and supported, please do join us TOMORROW in North Berwick Library from 10.30am.

We'll be there with open arms and pots of tea.



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❣️Peer support session! ❣️

Cancer patients and their family and friends are invited to join us in North Berwick Library this Thursday (14th December) from 10.30am, for some peer support and understanding.

Wherever you are in your cancer journey, and however you're affected, come and chat with us.

Free refreshments provided.

** Please share **

Participants needed for a research study at the University of Edinburgh – please visit the link below.

📋 Our Research Study: Understanding Couples Coping with Prostate Cancer!

🔍 Are you and your partner navigating the challenges of prostate cancer together? We want to hear your story! Please participate in our research study and contribute to a better understanding of how couples cope with prostate cancer.

🌐 Please visit: https://edinburgh.eu.qualtrics.com/jfe/form/SV_0DQRCQRJ2FERdT8

🤝 Join us in advancing research and supporting couples coping with prostate cancer! Together, we make a difference.

If you or a loved one has been diagnosed with a primary GI cancer (including oesophageal, pancreatic, liver, gall bladder or bowel, among others), a new cancer charity might be the place for you to find information and support.

Gi Cancer Care has been launched in Haddington by Lorna Forsyth and Joshua Mattox, whose spouses both died too young from bowel and pancreatic cancer respectively.

Their website is currently a directory of charities offering support, and they have hopes of building it up to widen their support of young GI cancer patients.

You can find them on Facebook or check out their website here https://www.gicancer.org.uk

"If a child is old enough to ask a question, they are old enough to hear the answer."

We were sent this gorgeous book by author and former breast cancer patient, Elke Thompson.

Elke was widowed in her early 30s, her children aged 11 months and three years, when her husband passed from cancer – and she herself had breast cancer just a few years later.

She wrote the autobiographical 'Is It Still Ok To Have Cuddles?' to explain to her children what was happening to her body during her illness and treatment.

What was cancer? Why would her hair fall out? And, most importantly, would her children catch cancer by cuddling her?

It can be so hard to know what to say to children, and how to say it, when their loved one is diagnosed with cancer – this beautifully illustrated story uses age-appropriate language to help families explain what's happening.

Check it and her other books out at Elke's website https://www.elkethompson.com – we'd be happy to lend you the book if you need some help having this difficult conversation.

Relay for Life Dunbar, raising money for Cancer Research UK, returns to the Halhill Centre on 24/25 June.

Last year, participants raised £65,500 for the charity!

The festival is focused around a 24-hour relay, during which team members take it in turns to walk around a track, with music and activities throughout the event and a Candle of Hope ceremony to honour every life touched by cancer.

Friends and families can sign up as a team, join other teams or sign up as a survivor – and survivors are at the heart of the event. As VIP guests, they get a cream tea and a goody bag...

Sign up at https://relay.cancerresearchuk.org/site/TR?fr_id=2197&pg=entry&&utm_source=bing&utm_medium=cpc&utm_campaign=IMP%20%7C%20Relay%20%7C%20B%20%7C%20Location%20%7C%202023&utm_term=Relay%20For%20Life%20Dunbar&utm_content=B%20%7C%20Relay%20%7C%20Dunbar&gclid=35ac76cc71b51d22a5eb129fb38e5d71&gclsrc=3p.ds

Relay For Life Dunbar Relay For Life is an inspirational community event which celebrates the lives of people touched by cancer and raises money for the vital work of Cancer Research UK.

🗓Date for your diary!

🎶 Why not pop along to this fabulous-looking concert by the Edinburgh Mandolin & Guitar Orchestra, and featuring the Gullane Community Ceilidh Band?

Raising money for Cancer Research UK and Young Lives vs Cancer, tickets are £10 each on the door.

Sunday 26th March, doors open at 5pm.

Ready and waiting with tea and biscuits in North Berwick Library NOW!

I’m be here till at least half eleven if you need someone to chat to # # #

😮‍💨 If you or someone you know is affected by a lung condition, the East Lothian A+LUK support group meets in Musselburgh once a month, offering support and talks from healthcare professionals.

🗓 Join them in Musselburgh East Community Centre on the second Wednesday of every month at 2pm.

☏ For more information, call Lorna on 01875 572804 or email her on [email protected]

https://www.blf.org.uk/support-in-your-area/breathe-easy-east-lothian-support-group

East Lothian A+LUK Support Group - British Lung Foundation VAT number 648 8121 18. Registered charity in England and Wales (326730), Scotland (SC038415) and the Isle of Man (1177).

💚 Please don't forget, there's a £1million ENERGY FUND to HELP THE MOST VULNERABLE RESIDENTS in East Lothian, particularly those affected by a terminal illness.

💷 The fund has so far distributed more than £65,000 to the hardest hit East Lothian families and individuals since it was launched on 1st December, AND IT'S DUE TO RUN UNTIL THE END OF MARCH.

💻 Visit https://www.communityadvice.scot to find out more – click on "Find a Referral Partner" to be referred or fill out the "Household Application Form".

📱 For further help, email [email protected] or call Anouska on 01368 863 720.

https://www.eastlothiancourier.com/news/23265016.1-million-energy-fund-helping-stave-off-cold/

£1 million energy fund helping stave off the cold TERMINALLY ill residents in East Lothian are among those benefiting from a new £1 million community energy fund.

❣️Support session! ❣️

Join us in North Berwick Library TOMORROW (Thursday) from 10.30am, for some peer support and understanding.

Wherever you are in your cancer journey, and however you're affected, come and chat with us.

Today is World Cancer Day — an opportunity to focus on all those affected by the disease.

Here in East Lothian we’re lucky to have access to Macmillan Cancer Support Scotland & Cancer Card & Maggie's Edinburgh among many other services that support and guide patients and their loved ones through diagnosis, treatment and after care.

And don’t forget — we meet in North Berwick Library on the second Thursday of every month to offer peer support to EVERYONE affected by cancer.

You are not alone.