We’re a small group of patients – supported by professionals from the St Luke’s Skin Cancer Team – who’ve formed a Melanoma Support Group for those attending St Luke’s Cancer Centre.
The Support Group is intended as a safe place for people to help each other, and this includes family members.
As a relatively healthy 60 ish male, I was devastated after receiving my Melanoma diagnosis. Life suddenly took a worrying turn; work became a distraction and not a focus and I was having to deal with the possibility of a terminal illness. Fortunately for me all was well (touch wood) though I still recall the angst during this period of uncertainty. I joined MelaNoMore to help others going through similar experiences and I am now the Treasurer, the Newsletter Editor and along with Aga organise the Wellbeing Webinars for the group.
My aim is to ensure MelaNoMore remains a sustainable support group both financially and with a stable membership.
My brush with melanoma was through supporting my partner, Steve. His bravery and optimism through a tough and painful journey inspired me to try to help others going through similar times. Having run Story FMR, a local charity fundraising for research, and now working with MelaNoMore has convinced me that there can be real strength in sharing experience and supporting others. My passion is in running successful, informative and enjoyable events, to bring like-minded people together, and this is the main focus of my work as part of the MelaNoMore Committee team.
From a fit active hard working early 60’s male, my world suddenly took a dramatic change when a fast-growing mole was diagnosed as a malignant melanoma. Surgery failed to remove it all, with scans and biopsies confirming it was the cancer had spread throughout my body. Immediately followed rounds of immunotherapy with months of difficult side effects and periods in hospital with a rollercoaster of emotions and luckily the miraculously ‘all clear.’
With that background I joined the Committee of MelaNoMore in August 2020 as Lead on the new Buddy Scheme, giving a listening ear and one to one support to others or their families on a similar path.
PR & Functions
A freckle above my knee was getting larger, which my GP said was fine. So, I decided to see a different GP, who referred me, to a Dermatologist, who performed a biopsy and I was told, it could be Melanoma. The results came back as stage 2, then after a successful operation, I was on the mend. Sadly, 2 months later my leg still wouldn’t bend, so I tailed onto Mr Pakzad’s clinic and was told I needed physio, the feeling was cathartic, as I didn’t think I was going to be able to walk properly again, which frightened me enormously. I went privately purely for quickness, then after two sessions I was practically walking normally, and keeping up physiotherapy for four weeks, made all the difference. I was back playing tennis after six months. So, when things seem like they aren’t going to get better and it’s never-ending and exhausting being on crutches, they got better, just hang in there.
Web Site Design & Editor
Late 2014 a mole on my right shoulder started to itch, then to weep. Biopsy confirming mole was cancerous. Mar15 surgery removed a 20mm strip, plus lymph nodes, 35% cancerous. June scans showed melanoma had spread into both lungs, the liver, lymph nodes, lower spine, left thigh, hole in my hip bone. Urgent treatment with Ipilimumab was started. 3rd Ipi proved too much for my immune system, and spent week in hospital to recover.
A new treatment, Pembrolizumab, which NICE had just fast tracked, was started early Nov15. A PET scan Dec15 prior to 3rd dose, showed amazing results, cancer in left lung now nearly gone, right lung fine, liver reduced, central lymph node reduced, shoulder growth gone.
Scan results Jun16 showed no activity which meant I was in full remission. Decision taken to stop treatment of Pembro Nov16.
I helped setup MelaNoMore in Aug19, becoming the Treasurer and to establish our website, which I still maintain today.
Trainee Advanced Clinical Practitioner - Skin Cancers
The Clinical Members
Lead Macmillan Skin Clinical Nurse Specialist
Skin Cancer Co-ordinator
Clinical Nurse Specialist
Skin Cancer Nurse
Call for new committee members
The Committee, which steers the Group, was set up by volunteer members from the local community. Now we’re up and running we’re looking for lots more volunteers to help keep the group running on an ongoing basis.
Do you have an interest or skill and are keen to contribute to the Melanomore team? Perhaps you’re a great communicator and you’d like to help out with local events; maybe you are artistic or love helping organise fun events; perhaps you have experience in financial management, fundraising, diplomatic or secretarial skills? Whatever your focus, we’d love to have you.
If you’d like to get more involved on an ad hoc, temporary or even permanent basis, we’d love to have you! Please email us and we’ll be in touch.
We’ve included links to all sorts of helpful organisations in this website, but please be aware that we are non-clinical lay people. We are not medical professionals and the website isn’t intended to provide specific medical advice. If you do have any clinical questions or questions about your diagnosis or treatment, please get in touch with your Clinical Nurse Specialist at your base hospital or the Out of Hours service.
We hope you find our site helpful and we look forward to meeting you soon and welcoming you into the group.
- Hold information and education meetings covering a range of issues
- Arrange group meetings to allow patients to meet each other
- Organise social events for patients and their families
- Provide regular information through Social channels
- Provide a Buddy system for patients
Through social & virtual events, such as our Wellbeing Webinars, where everyone can meet, chat and seek advice. We have now returned to "real" social gatherings.
Click here for ~ Newsletters
As well as running educational events, we have a website where lots of information about Melanoma, will be easily accessible and pooled into one simple point of access.