Birthdays I love them, another year older and wiser (Mr H may disagree about that one !) or so they say. The aging part, I used to like less “it’s just a number right” but now I don’t care and every birthday is to be celebrated in style as another milestone when I am still very much alive here having fun making the most of life. It may have taken stage 4 melanoma to have me thinking like this but there’s got to be some positive to this awful disease. As for the wiser, well I have learned more about melanoma in the last month after being fortunate to attend the Melanoma Patients Conference on June 22/23 where a host of medical experts, patients, partners, charities and pharmaceutical companies shared the latest information on treatments available, patient support and care. The conference also offered the opportunity to meet up with other patients face to face and share experiences of life on the melanoma rollercoaster good and bad.
Some key developments from the conference included the introduction of adjuvant treatment (treatment given to help decrease the chance of cancer recurring) for stage 3 melanoma patients. This has already been approved in the US and should receive approval in the UK soon having shown positive results in trials. This will likely involve patients in less intrusive surgery once the melanoma has spread to the lymph nodes with a more localized approach to removal of the affected lymph node(s) followed by immunotherapy to try and clear any residual issues. For example, I had 20 lymph nodes removed under my left arm in February 2017 with the associated risk of developing the serious side effect of lymphedema. This is an exciting development for patients as just last year as a Stage 3 patient, the only option was to “watch and wait” to see if the melanoma came back, which is obviously difficult as a patient having only a reactive rather than proactive strategy to manage the disease.
I also particularly enjoyed the patient presentations from Dr Lauren Cara on de-mystifying the role of diet and its impact and Kay English Curtain on Understanding the Statistics. One of the biggest challenges in being a cancer patient is the loss of control on your life but diet and educating yourself to understand treatment options and statistics are two things you are most definitely in control of and personally help you better manage your disease, which feels good. By the end of the conference my brain was hurting and I felt a bit overwhelmed. I also had a worry on my mind as in the few days leading up to the conference I had felt as if the numbness in my mouth was spreading which was making me feel anxious.
After the conference, David and I headed down to Devon to meet good friends Jen and Paul for a lovely weekend of R and R just what was needed and I momentarily forgot my worries. Back in London, the following Monday we had a meeting with Dr Larkin to discuss the Team Shomelanoma fundraising for the Marsden melanoma research projects. I mentioned my concern about the numbness in my mouth and he agreed that we should bring forward my next scans and fortunately they had a slot the next day. I spent the next few days going through the usual scanxiety before the Monday morning appointment. Monday arrived with me convinced that I was to be told bad news but fortunately I was told that there was no evidence of further progression and my scan was fine. The difficulty with sensory nerve damage (which is where my tumour has affected part of my brain) is that it can create a strange numbness sensation. I felt relieved and so much more relaxed departing Marsden HQ.
The melanoma research meeting was really interesting and Dr Larkin highlighted two of the research efforts that the Team Shomelanoma fundraising can support. The first project is looking at immunotherapy toxicities to get a better understanding of why some patients experience such severe side effects from the treatment. This has personal relevance as many of you will recall I spent 3 weeks last summer at Marsden HQ due to developing autoimmune hepatitis as a result of the immunotherapy treatment. The goal of the research is to identify a panel of biomarkers that will identify patients at risk of immunotherapy toxicities. The second project is looking at circulating tumour DNA using blood based markers for cancer monitoring to predict the evolution of disease and response to treatment. These are both much-needed projects that will hopefully translate for patient benefits soon. As the research progresses, I will keep you updated. I have now been on my current treatment Dab/Tram for 7 months and, touch wood, it has been effective at controlling my melanoma. However the challenge is on average the melanoma develops resistance after about a year. It’s vital that medical research and trials are supported to continue developing new treatment options for melanoma patients.
On a very sad note, a fellow Royal Mardsen melanoma patient and YouTube vlogger, Emily Hayward sadly passed away last month, aged 24. I never met Emily but became aware of her when she featured in a Channel 4 Stand Up to Cancer documentary last October. She regularly uploaded her vlogs onto her YouTube channel and had in excess of 50,000 subscribers across the world. She wanted to share her journey in the hope that more people would become aware of the seriousness of melanoma but more importantly to remind everyone that you can still live life to the max even whilst living with cancer. It shouldn’t take cancer to make people realize this but we only have one life, so please live it well. RIP Emily and thank you for sharing your courage and positivity with us all.
This weekend we will be undertaking the next MAJOR Shomelanoma challenge of the Jurassic Coast 100km. There have been a few injuries along the way but the team is fighting fit and ready to go on Saturday morning at 8.30am from Poole. David who has already successfully completed the 100km on the South Downs 9 years ago has been sharing the photo this week and it has been noted he has not aged much since then! However lets see how the bodies are feeling on Sunday when we eventually complete the 100km walk they may be feeling and looking their age at that point. The excitement is mounting, we are looking at a hot weekend and we will post updates on Facebook and look out for the Team Shomelanoma photos. Huge thanks to Michelle, Colin, Phil, Tony, Sam and of course my rockstar husband who is back doing this challenge for the 2nd time because he has forgotten how painful it was the first time. !!! In all honesty we have loved the training walks (thank you Phil for organizing) and the girly chats around Richmond Park with Michelle and with Jen in the Chilterns.
Huge thank you to everyone who has supported us in the latest challenge and all other events to date. It really does help to keep me focused and motivated to do more. We are tantalizing close to cumulatively hitting £30K raised in the last 12 months and we would love to see the magic number hit this weekend!
A final word on this year’s birthday I had a lovely birthday week, it kicked off with a family wedding in Wilmslow and an England world cup win in the local pub (don’t tell the Scottish family!!) I spent a gorgeous birthday hiking on the South Downs with a pub lunch followed by dinner at the favourite seafood restaurant Wright Bros that has a new outpost near Battersea Power Station and the best Oysters in town. On Saturday I had a bonus treat of the Nadal vs. Djokovic match, which was amazing, followed by the ladies tennis final. I was also lucky to catch up with some of the gorgeous girls squad including Ms Majorca 312 Melissa Tarver It has been lots of fun another year older and wiser don’t forget the motto – don’t sweat the small stuff and enjoy every day!
If you would like to support Team Shomelanoma fundraising organise a curry eve, bake sale, pub quiz or sign up for your own challenge to support then let me know and we can help organise it.
More to come soon on the aftermath of the Jurassic Coast 100 KM plus the gorgeous Kirsteen Higgins adventure swimming Loch Lomond and Team Shomelanoma takes on the Royal Parks Half Marathon – Part 2.