Cancer · Fundraising · Living with Cancer · Melanoma

Living WITH Stage 4 Cancer – Rebellious Hope inspiration from Dame Deborah  

Like many stage 4 cancer patients, I have followed Deborah James (Bowelbabe) over the last 5.5 years since her diagnosis and felt heartbroken to hear the news that she had died and am sending much love to her gorgeous family.  Much has been written about Deborah, her incredible campaigning has changed the conversation around living with cancer, the brilliant podcast You, Me and the Big C which felt like a warm companion being completely open about dealing with the shitshow that is cancer, her incredible fundraising which will help fund new research for innovative treatments and her amazing zest for life. She has also in the last couple of months put the spotlight on end of life care and talked openly about having the death she wanted with her family around her and has helped so many people in doing so.  She will be very much missed and leaves a legacy that her family must be hugely proud of RIP Dame Deborah.

I was recently due back at the Marsden for my latest scans. I have been going through the scan cycle now for over 5 years and I would hate to count up the number of times that I have been lying in a CT or MRI scanner it has just become part of life. Normally in the build up to the scans I am going through a period of mental anxiety, strange dreams and of course feeling worried that the cancer may be on the march again. This has become my  normal and other stage 4 cancer patients will relate to these feelings. This time in the build up to scans I had been fortunate to have spent 4 days the week before at The Cabilla Wild Calm Retreat in Cornwall.  It is hard to describe in words just how amazing this special experience was in helping me reflect and get rid of some of the anxiety and stress that had built up inside.  I spent 3 days in the beautiful surroundings of the temperate rainforest in Bodmin Moor, Cornwall. We learned about the rewilding programme taking place there, went on nature walks to spot the beavers, wild swimming in the woods, daily yoga and had the intense experience of the gong sound bath which helped you to dig deep and release that inner stress. The retreat was led by the fabulous yoga teacher Sorrell Drake and we were fed the most delicious vegetarian food by  @mindfulchefette. I left feeling very relaxed and calm and would really thoroughly recommend the wild calm retreat, it was an amazing experience. Here are a few pictures and the link to Cabilla https://www.cabillacornwall.com

By the time the date for the scans came round I was still feeling the calm effect from the wonderful retreat experience and my love of yoga had also been rekindled, I remembered how much the breathing helped me when I was feeling stressed. The scans passed without event and I had a busy week in the run up to the results appointment going to Wimbledon and Hampton Court Flower Show. By the time Monday morning came around and I was due in at Marsden HQ for the results and David was allowed to attend with me for the first time in 2.5 years due to COVID. My scan results were good, I have passed go for 3 more months and my Oncologist also reminded me that it was 5 years since I completed my immunotherapy treatment and spent 3 weeks in hospital. At that point I didn’t dare to dream that I would still be here 5 years on and I felt quite emotional thinking about it. I know that I have been very fortunate to have benefited from the latest drug treatment for advanced melanoma. However many patients do not respond to treatments or their cancer develops resistance hence why it is so important to continue funding melanoma research to find new treatments and there is so much more to be done.

Last month the Melanoma Patient Conference took place for the first time in person since 2019. The conference was start by fellow patient Imogen Cheese with the goal to provide information for patients on the current systems of care, treatment access and support for melanoma. It was really wonderful to be back at the conference and see other patients in person who are going through a similar experience to you and just get it. The patient panel where 3 melanoma patients shared their experience of living with melanoma was one of the most moving powerful sessions and you really understand that whilst we all have melanoma each patient experience is so unique and different.  I also found the Oncology Session extremely valuable particularly the session by Dr Paul Nathan that covered the latest developments in treating brain metastases (mets), which can pose a significant challenge for treating melanoma. His talk highlighted that one of the keys to successfully treating brain mets is to catch them early and there is also an improved response to treatment when they are asymptomatic.  There is also research work underway to understand more about the tumour microenvironment in the brain. The other talk that was very interesting was from Dr Rebecca Lee and focused on the Biomarkers and how they impact on Therapy specifically looking at circulating tumour DNA in the bloodstream. It has the potential to be useful for patients in the clinic to monitor for disease relapse, predict the response to therapy, identify the mechanisms of resistance and optimise the scheduling of treatment.  There are currently ongoing trials to assess whether this can impact treatment and improve outcomes for patients and it will be very interesting to monitor how it all develops.  It was a wonderful couple of days and a huge thank you to Imogen and everyone who contributed to the conference. 

Earlier in the summer David and I made a trip back to the north of Scotland to the beautiful region of Torridon and then spent a week in the Outer Hebrides. We really love it there it is hard to believe that it is part of the UK, the scenery is just stunning and it really feels like one of the last unspoiled wildernesses. The beaches are beautiful and the sea wild and we were really lucky to have a cottage overlooking Luskentyre beach. We also explored the isle of Lewis this time and it is also stunning. I felt really fortunate to go back there as I was last there in 2018 and I really didn’t know if I would return. We also ate some amazing fresh seafood, which I love and it was good to finally get there after 2 years of COVID. Here are some photos from the amazing trip.   

Team Shomelanoma is now training for their next big challenge, which is coming up in mid September.  We are taking on climbing Mount Toubkal, which is North Africa’s Highest Mountain and is 4167m.  This will be the biggest challenge since we did Kilimanjaro 6 years ago. We have a team of 15 who are signed up and in just 6 weeks we will be flying out to Marrakesh to start our climb in the Atlas Mountains.  It will take 3 days we will be sleeping in refuges and will have the altitude, heat, and tough terrain plus scrambling over the boulders to contend with to reach the summit. We will need to dig deep these challenges are often as much about the mental as the physical challenge.

 I have a feeling of nervous anticipation at the moment. One positive of the current heat wave is that we are doing our training in warm weather, which should hopefully help with the heat of Morroco. A couple of weeks ago we were down on the South Downs for my birthday and out hiking around Arundel and Amberley. It was a beautiful day although really hot. After 3.5 hrs we arrived in Amberley and whilst I had been drinking water and we had stopped for a break I was feeling like it may not be a good idea to continue for the rest of the 8km given the heat. So we stopped had a drink in the pub and got the train back to Arundel. I was glad that we listened to our bodies and didn’t push on and get heat stroke (I have enough medical issues to deal with). Since then training has continued in the Surrey Hills and the Chilterns and this weekend we are off to the Malvern Hills followed by Scotland for more hill training.

We will be raising funds to continue supporting melanoma research at the Royal Marsden Cancer Charity. As we know many patients do not respond to current treatments of the cancer becomes resistant and we continue to lose 7 people every day to melanoma in the UK and why we are so passionate to continue funding melanoma research to find new treatments as we are losing too many lives to this devastating disease .  https://www.justgiving.com/fundraising/Shiona-RamageToubkal

If you would like to support the team in their next challenge we would be hugely grateful and thank you as always for your continued support.

I will be detailing the Team Shomelanoma Morroco adventure on the blog and on all social channels. There will also be a Morocco themed food and drink party to come, which will also act as a fundraiser to support the challenge. Look out for more details to come shortly on this. I also have to say a big thank you to the Royal Marsden Cancer Charity team who have designed a fabulous new supporter page for the Team Shomelanoma Fundraising and also a new Team Shiona Marsden Fund Logo, which I absolutely love. One of my good friends who said on seeing the logo oh I love that it looks like you !

On that note,  I hope that you are all having a wonderful summer, with all of these extreme temperatures please ensure you are protecting your skin with factor 50, stay out of the midday sun and cover up. Please also do a monthly skin check and Melanoma UK has an excellent checklist. If in doubt get it checked out.  I’ll be back with more on the Morocco Adventures next month.

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