Cancer · Fundraising · Living with Cancer · Melanoma

 Goodbye 2022, 5 Years on Dab/Tram with Stage 4 Melanoma

December always brings a lot of bad memories to the surface for me, as it was Dec 2017 when I had the recurrence of a new brain tumour after immunotherapy treatment and just 2 months earlier my scans had been clear. You can be drawn into a false sense of security and as most stage 4 cancer patients know with this vicious disease things can change all too quickly. So, as I made my way back to the Marsden earlier this month for my latest scans to say I was feeling anxious was an understatement.  My previous scans showed an enlarged chest lymph node which can be caused for several reasons, infection, inflammation but can also be a sign of cancer. Six years ago in Dec 2016, I found an enlarged lymph node under my arm and that was malignant melanoma and growing very fast. I subsequently had surgery to remove all the lymph nodes under my arm.  However, in the case of the chest lymph node, I had felt somewhat reassured when my Oncologist had said at the last appointment that he wasn’t overly concerned.

My scans went very smoothly and I was in and out of the Marsden quickly thanks to the efficiency of the radiologists. There wasn’t long to wait for the results as I had the follow up appointment with my doctor 3 days later. I was feeling nervous, all the yoga and deep breathing still don’t make it any easier even after going through this for 6 years. My doctor called David and I into the consulting room and I was told that my brain scan remains stable and my CT scan is the same as the previous one, i.e. still showing the enlarged chest lymph node but it hasn’t grown. He thinks this is unrelated to my melanoma and we discussed that I would have repeat scans again in 2 months. I left the appointment feeling relieved that there was no change, I was feeling healthy but obviously the best situation would be that the lymph node had returned to normal. However, I decided to put this to the back of my mind and get on with enjoying the festive season one which 5 years ago I thought I would be very unlikely to see.     

The following Monday, I was back at the hospital to collect my medication and was en route home on the tube and I saw a missed call on my phone from “caller unknown”. Most patients will know that when you see this on your phone your heart normally jumps a beat as it looks like it is from the hospital. I had a jumbled message on the phone and my head went into immediate panic … maybe it was the results of my recent smear test and there was some issue with it. Anyway my Garmin watch told me to calm down and as I burst through the door at home to announce to David I was worried about a missed call from the hospital and couldn’t fancy another issue to deal with, he told me to calm down and he listened properly to the voice message on my phone.  I called the number left on my phone and quickly realised that it was in fact nothing to do with any dodgy smear test result but was in fact the Marsden trying to book dates for my next scans. Anyway I immediately felt relieved but it does just show the heightened anxiety that cancer patients feel around medical phone calls, appointments, scan results etc.  and this does not go away with time  and/or getting used to it and the December time of year just has so many bad memories that it just makes the situation feel much worse.

I have also recently passed my 5-year anniversary on my wonder targeted drugs Debrafenib and Trametinib, which have successfully kept my stage 4 melanoma under control for 5 years, this feels a significant milestone.  In Dec 17 when a new tumour turned up in my brain I honestly didn’t think I would be seeing another Xmas so the fact that I am still here to celebrate another one with family and friends makes it feel all the more special. I did become fixated with the fact that on average Debrafenib and Trametinib work for 12 -14 months and when that time passed I kept wondering how long they would work for and I do remember asking my doctor this question.  My Oncologist of course cant answer that question but he did remind me that this was an average so for some patients the drugs can work for much longer especially if you have a low tumour volume (less than 3) which is the case with me.  Also, I started the dab tram after responding to immunotherapy and the emerging evidence suggests that this provides a more durable response than the average 12-14 months.

After the recent hospital trips the festive season kicked off with gusto. This can be a very hard time of year for many people as we remember those we have lost. I was really pleased to attend the Royal Marsden Cancer Charity Celebrate a Life Carol Concert outside the Chelsea Hospital on Dec 8. It was a beautiful service and my 2 gorgeous girlfriends Liz and Jen also joined me for the service. This year I had a star on the tree for my cousin Brian Oates who died from bowel cancer in May 2017; we were both diagnosed around a similar time and used to share text messages. We sang loudly, remembered loved ones and listened to the words of the vicar giving such a beautiful service and it felt a very special evening. 

Another highlight of the Xmas season is our annual festive drinks party. This year the party moved to No 1 Duke Street Richmond and it was also my rock star husband David’s pre 50th birthday drinks (his big bday is in February). The World Cup was in full force and it coincided with the England vs. France quarter-final so we had a large screen on to show the match. The England team didn’t quite manage to beat world champions France but it was a very close match. As soon as it finished we got on with the partying and the boys soon forgot about England’s world cup exit. It was really special to see all of our friends after 2 years of COVID and just let our hair down and have fun. The fact that I don’t drink anymore makes no difference to my party enjoyment. I was high on the excitement of seeing everyone to celebrate the festive season and David’s pre 50th bday. We have many special friends who have supported us through tough times and it was lovely for David to say a few words of thanks to everyone who has been there through thick and thin for us. We appreciate it more than words can express we love you all and just want you all to know that as we enter into another new year.   

2022 has been another incredible year for the Team Shomelanoma Fundraising. Currently the grand total lies at £83,583 so a MAHOOSIVE thank you to all of our family and friends who have so generously supported and donated to the fundraising challenges it means the world and is hugely appreciated by the charity and the melanoma team at the Marsden Hospital.

I was also recently asked to write a guest blog for UK Fundraising, which is an online resource and community for UK charity fundraisers. My blog covered my Shomelanoma story plus lessons learned from the fundraising challenges. Here is the blog if you didn’t catch it on my social channels. : Meet the fundraiser: Shiona Ramage – UK Fundraising

As 2022 comes to a close I want to remember a quote from the wonderful Dame Deborah James who I found hugely inspirational and died of bowel cancer earlier this year. She said, “ find a life worth enjoying, take risks, love deeply, have no regrets and always have rebellious hope”

Sometimes dealing with a cancer diagnosis feels like climbing a mountain that is never ending but it also focuses the mind on what’s important in life. It’s not about the money and the stuff you cant take that with you, it’s the simple things having more time and adventures making special memories with those you love and that’s what I treasure every day as we go into 2023. Wishing you all a very happy new year, hug those closest to you and look out for more adventures coming soon from Team Shomelanoma and thank you again for all of your love and support.

Cancer · Fundraising · Living with Cancer · Melanoma

Moroccan Mountain Highs to Back on the Cancer Rollercoaster

Mount Toubkal Summit Sunrise Sept 17, 2022

What a difference a week makes. Last month Team Shomelanoma’s 13 musketeers were wakening up at 3 am after very little sleep in the mountain refuge dormitory ready to climb to the top of Mount Toubkal North Africa’s tallest mountain. Upon my return from Morocco I was straight into the Royal Marsden for my latest set of scans and was back to earth with a big bump.

As I had just returned from Morocco and having been on the highs of climbing Mount Toubkal there had been no time for thinking about upcoming scans. I headed off to Marsden HQ still feeling on a high from my Moroccan adventure. The scans were uneventful and all passed smoothly thank you to the radiography team at Marsden HQ who are a model of efficiency. I was back at the Marsden on the Friday to see my Oncologist for my results. My brain scan was clear which is good, as you know when my melanoma spread in 2017 it was to my brain and everything has been stable there for over 5 years. However, my CT body scan shows that I have a lymph node in my chest that has popped up. My doctor explained that lymph nodes can pop up for many reasons including infection and many other things that are not related to the cancer. In fact last year I had a similar situation on one of my scans and it was not long after I had my COVID jab. He also said he felt it was very unlikely to be related to the melanoma as if it does recur it is more likely to return where it has grown before. He advised me of my options – either we bring forward my next scans from 3 months to 2 months or he could send me to see a chest specialist for further investigation and he would most likely do a bronchoscopy and biopsy to check it out.

I left the hospital feeling very frustrated. I had just come back from the most amazing trip to Morocco and less than one week later here we were again back on the cancer rollercoaster more tests, worry and anxiety but such is the life of living with stage 4 cancer. After I had time to digest and process the news I thought about Dame Deborah and what she would have done in my situation and I know she would have pulled up her big girl pants got out a glass of wine (in my case non alcoholic beer) and danced round the kitchen, one day at a time and fingers crossed this is just a blip on the long road.

The following week I was back at the Marsden for my planned check up with my Breast Cancer Oncologist. Fortunately my ultrasound and check up were all good so I have decided to have my next scans brought forward from 3 to 2 months. If there is still an issue on the next scan then I will be sent for further investigation. I know that other patients have had this issue also had it investigated and it has turned out to be innocent so I have fingers crossed and will keep you posted.

Back to the amazing adventure to Morocco, we set off in mid September for the latest Team Shomelanoma Hiking Challenge to climb Mount Toubkal North Africa’s tallest mountain. Getting packed for the challenge was giving me flashbacks to Kilimanjaro, which we had climbed 6 years ago, and was the last big overseas challenge we had undertaken. In the run up to the trip I had called Insurance With who are a specialist travel insurance company who cover cancer patients and had insured me previously when going off on adventures to Peru and Argentina. When I called them the week before setting off for Morocco, they informed me that they no longer insured anyone to go above 4000m. With Mount Toubkal at 4167m this presented a problem and the agent told me they would not be able to insure me. As it was important that I was insured for the altitude I had to go with another insurance provider but my melanoma would be excluded. I wasn’t overly concerned about this but it does highlight the issues of travel insurance for a stage 4 cancer patient.

Team Shomelanoma all arrived safely in Marrakesh and we had a couple of days exploring the crazy city before setting off for the Atlas Mountains. Friday morning we left Marrakesh and headed to the village of Imlil in the foothills to start our trek. After a briefing with the local guides we set off on the 6-hour trek climbing from 1740 m to Toubkal base camp at 3210m. It was a hot day and there was no shade and you rise a significant amount of altitude in one day. We were all very happy to reach the Toubkal basecamp refuge to get our heads down for the night ready for the 3 am wake up call. We were all in one dormitory in bunk beds and the conditions were pretty basic. I had little or no sleep as I had a dodgy stomach and ended up at the toilet every hour on the hour. When the 3 am alarm call came I was feeling pretty tired and we hadn’t even started the climb in the dark to the summit.

We all set off up the steep scree and boulder filled slopes and it literally was straight up to the summit. Climbing in the dark, head torch on reminded me very much of Kilimanjaro summit night where you can just see the lights of the hikers torches ahead zigzagging up the slope. We could really feel the altitude and the air thinning and I found myself stopping to catch my breath on the way up. We did stop for regular breaks and it helped having Clem singing some Take That numbers on the way up to keep the morale of the team up. I was tempted to join in but my singing is not the best as many of you will know. The relentless ascent continued until we could see a glimpse of light and realised that the sunrise was coming and we should be nearing the summit. We approached the crest of the summit where we had a short break and could feel the full force of the icy winds. At this point as the sun rose we got the full effect of the amazing views as the sun appeared and we could see the full cloud inversion below. Unlike Kilimanjaro when there was still a long hike to the summit as the sun rose we could see Toubkal summit was just another short climb away and along with the views this gave us an extra boost to reach the summit.

The views were epic and the feeling euphoric as we all reached the Toubkal summit. I was feeling super proud of all of the team and slightly emotional that here I was 5.5 years on from my stage 4 melanoma diagnosis and still able to take on these incredible adventures with a very special team of family and friends. In my rush to congratulate our lead guide Craig on getting us all safely to the top when he said to me “ Don’t do that now we still need to all get down safely” I realised that we still had a long way to go until we were all back at the next hostel. As we started to descend down a very steep slope full of loose scree I realised that the toughest part of the climb was not in fact the ascent but the descent. After 4 hours of the rocky scree slopes, I almost lost it when we arrived at the boulder field, I was tired kept falling on my bum and just needed to get onto a more stable footing. We did finally get down over the boulders and we arrived at the next hostel 14 hours after we had left the refuge absolutely exhausted. After no sleep for the previous 48 hours we all slept like logs and the next morning everyone was feeling much brighter even although the legs were still aching. We spent the next day walking around the berber villages of the Atlas foothills, which were just beautiful. Here are a few photos of our amazing adventure.

This was one of the toughest challenges we have taken on so far and I feel super proud of all of the team for successfully completing it. A huge thank you to Craig Saunders and the team of local guides who looked after us all amazingly well. 5 years ago after being diagnosed with stage 4 melanoma I honestly didn’t think I would be able to continue taking on such extreme challenges. I am hugely grateful to the team at the Royal Marsden for the fantastic care I continue to receive especially Prof Larkin, Nikki Hunter and Miss Fiona MacNeill who all have actively encouraged me to continue living life to the max. The challenges have also given me a sense of purpose, motivation and have helped keep me healthy both physically and mentally. To all of my Toubkal Team Shomelanoma musketeers you absolutely rock massive thank you for creating another memorable adventure that will last a lifetime and was very special love you all.

The team was taking on this challenge to raise funds for melanoma research at the Royal Marsden. Less than 10 years ago someone with my prognosis where melanoma has travelled to the brain would survive on average 6 to 9 months’ as there were no effective treatments available. The fact that I am here 5.5 years after a melanoma tumour was diagnosed in the brain is nothing short of incredible and in large part due to the significant advances in drug treatment (immunotherapy and targeted therapy), which have transformed the treatment of advanced melanoma. However over 50% of patients do not respond to current treatments or the cancer develops resistance and they run out of options. We lose 7 people a day to melanoma in the UK and this is why we are so passionate to continue funding melanoma research to stop so many people losing their lives to this devastating disease.

Whilst melanoma has been at the forefront of immunotherapy, its use has subsequently extended to many other cancer types. The funds we raise are explicitly used to further understand immunotherapy treatments and the evolution of cancer as it metastases and spreads around the body, in the hope that further breakthroughs and improvements in cancer treatments emerge.

A MASSIVE thank you to everyone who has supported the latest Team Shomelanoma Toubkal Challenge.

In addition, Chris Lloyd and Becky Pearce took on the Royal Parks Half Marathon for Team Shomelanoma last Sunday October 9. They were both fabulous and completed the race in good times raising more funds for the Royal Marsden. Big congratulations to them both and thank you to everyone who has supported them.
Thank you again to everyone who has supported the Team Shomelanoma fundraising challenges. I’ll be back next month with more Shomelanoma updates and keep your fingers crossed my pesky lymph node is just a blip.

Cancer · Fundraising · Living with Cancer · Melanoma

Team Shomelanoma to climb North Africa’s Highest Mountain for Royal Marsden

Team Shomelanoma training for Mount Toubkal Trek

Later this week, Team Shomelanoma (Shiona, Dave, Liz, Johnny, Clem, Paula, Phil,  Natasha, Adrian, Tony, Sam, Molly and Ollie) are embarking on the adventure of a lifetime climbing Mount Toubkal, North Africa’s Highest Mountain standing at a majestic 4167m. The excitement is building amongst the team with nerves starting to build as we realise how close we are to flying to Morocco ready for a team talk and meal on Thursday evening.  After a night in Marrakesh to readjust to the 90 degree temperatures we make our way to the Atlas Mountains on Friday to begin the 6 – 7 hr trek to the basecamp at 3000m.

We will be staying in a basic mountain refuge and rising ready for our summit attempt at 3 am on Saturday morning.  The steep climb to the summit before the sun rises will see us climbing and scrambling over the huge boulders and rock’s of North Africa’s tallest peak.  With altitude, weather and terrain to contend to make this challenge extremely tough. The summit day is a long 12 to 14 hour day in very exposed conditions. Even as I am writing this thinking about it,  I am wondering if Morrocan Madness has come over us taking on this daunting adventure. We will all be digging really deep to succeed in this challenge

5 years ago during immunotherapy treatment

The team is taking on this challenge to raise funds for melanoma research at the Royal Marsden where I am treated for stage 4 melanoma. Less than 10 years ago someone with my prognosis where melanoma has travelled to the brain would survive on average 6 to 9 months’ as there were no effective treatments available. The fact that I am here 5.5 years after a melanoma tumour was diagnosed in the brain is nothing short of incredible and in large part due to the significant advances in drug treatment (immunotherapy and targeted therapy), which have transformed the treatment of advanced melanoma. However over 50% of patients do not respond to current treatments or the cancer develops resistance and they run out of options. We lose 7 people a day to melanoma in the UK and this is why we are so passionate to continue funding melanoma research to stop so many people losing their lives to this devastating disease.  On summit night, when the climb is getting really tough I will be remembering all of the lives lost to help motivate, dig deep and drive us to the summit.

On a personal note, the Team Shomelanoma fundraising challenges help to give back to the fabulous melanoma team at the Royal Marsden who have been at the forefront of melanoma research including translational research, running clinical trials and developing new treatments to extend the lives of cancer patients. The staff at the Royal Marsden hospital that care for you as you are going through such a deeply traumatic and emotional experience are outstanding. They go above and beyond to care not just for you as a patient but also your family and become like an extended part of your family.

Dave hill training in the Norfolk Dunes

Whilst melanoma has been at the forefront of immunotherapy, its use has subsequently extended to many other cancer types.  The funds we raise are explicitly used to further understand immunotherapy treatments and the evolution of cancer as it metastases and spreads around the body, in the hope that further breakthroughs and improvements in cancer treatments emerge.

Taking on these challenges while living with stage 4 cancer has also given me a sense of purpose, motivation and they have helped keep me healthy not just physically but also mentally.  We have also been fortunate to be on many adventures from the Jurassic Coast 100km to The Welsh 3000’s to the Giants Causeway Marathon Trek they have all raised lots of funds for melanoma research but also created very special memories with the gorgeous group of friends who take part and also support the fundraising. This means a huge amount to me personally and I just want to say a massive than you to everyone who has taken part in the Team Shomelanoma challenges you are all absolute superstars, I will remind you of this next Saturday as we are struggling up Mount Toubkal in the dark at 3am.

Hill training in the Surrey Hills just one more hill

All of the team have  been out training for the trek throughout the summer from the Malvern Hills, Brecon Beacons  to The Alps to the Scottish Highlands and more. Here are just a few photos from the training hikes. I also just want to say a big thank you to Jen and Immy Clark who were both also signed up to take part on the Toubkal Trek but are both injured so have had to drop out. You will both be very much missed and we will have a toast to you both at the summit.

If you would like to support the team in their Toubkal 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 so look out for more details on over the coming weeks

In addition to the Team Shomelanoma Toubkal Trek, we also have my gorgeous friend Melissa Tarver who is taking part in the Serpentine Swim Challenge on Saturday 17 September. She will be swimming a mile in the Uk’s largest openwater swim and raising funds for melanoma research at The Royal Marsden.

In addition, Chris Lloyd and Becky Pearce will be taking on the Royal Parks Half Marathon for Team Shomelanoma  on Sunday October 9. We will be there supporting them running through the royal parks. As some of you know Dave normally runs The Royal Parks Half Marathon too but this year it was just too close to Mount Toubkal but he will be back next year.

Thank you again to everyone who has supported the Team Shomelanoma fundraising challenges and we look forward to updating you on the Mount Toubkal Trek next month when we are safely back from Morroco.   

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

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 .

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.

Cancer · Fundraising · Living with Cancer · Melanoma

5 Years on with Stage 4 Melanoma – How Life has Changed

May is Melanoma Awareness Month

Five years ago at the end of March, I received the devastating news that my melanoma had spread to my brain and I would need immunotherapy treatment. I remember the day very clearly and my head going into a complete tailspin as I realised the enormity of what I was being told and questioned whether I was going to survive the next 3 months.  I didn’t really process anything I was being told about the treatment and I left the consultation in shock. Fortunately my husband David was with me and had managed to take in more of the detail. The immunotherapy treatment (ipilimumab and nivolumab) that has contributed to me still being here has been a game changer for extending the lives of advanced melanoma patients, began a few days later, for anyone who wants to read more about my full melanoma story is available here

Cancer anniversaries are a reminder of how long I have been living with incurable cancer not something that is necessarily to be celebrated. However I have been incredibly fortunate to have benefitted from the huge advancements in treatments for advanced melanoma and without these and the incredible care I receive from my second home The Royal Marsden I would without doubt not still be here writing this today.  Too many patients however don’t respond to these treatments highlighting the huge need to continue funding melanoma research to continue developing new treatments and stop patients continuing to lose their lives to this awful disease.

I was back at the Marsden in late March for my latest scans and all went smoothly at the hospital. The day after the scans I started to feel ill with a bad headache, blocked up nose and I was really tired. The next day I felt worse so I did a COVID test and it was positive.  I registered it with the NHS app and contacted the medical team at Marsden HQ to find out if I should continue taking my drugs. I was told by my Oncologist to continue on the medication as long as my symptoms remained mild. I didn’t feel great the next day but it was just like having a bad cold. On Friday, 2 days after I had tested positive the GP called to check in how I was doing and also to let me know they were referring me to the St George’s COVID team to check if I needed to have the antiviral drugs which were being given to the vulnerable. On Saturday, I had a call from St Georges and they went through a series of questions with me. By this point I was feeling slightly better but the doctor said he wanted me to speak to the respiratory consultant. On Sunday, the respiratory consultant called me and we went through more questions and in conclusion he decided that based on my feedback I didn’t need the antiviral drugs. I was impressed that the COVID response had kicked in and it did take me back to the start of the pandemic when my Oncologist advised that it was highly likely that I would get the virus at some point but it would be better to get it later rather than sooner as they would likely develop drugs to treat it which obviously they now have with the vaccines.  I was due into the Marsden on Monday for my scan results and to see my Oncologist but on Sunday eve I was still testing positive so I contacted my medical team and said I think its best I have a phone consultation.  At 8am on Monday morning my phone rang and it was Prof Larkin to tell me that my scans were good, 3 more months of drugs were being prescribed and it was happy days. I was so delighted 5 years on from being told that the melanoma had spread to the brain and as always it’s a huge thank you to the amazing melanoma team at the Royal Marsden especially Prof Larkin and my CNS Nikki Hunter who have been there with me all the way.

In the last couple of months, there has been much sad news on the melanoma support group that I am a member of and we have lost many special people.  One lady in particular I used to message some times as we had a similar love of the Scottish islands and I met her at a patient lunch a few years ago Susannah Archer who died of stage 4 melanoma a couple of months ago. It all happened very suddenly as she had run out of treatment options and was on a trial. She was always answering questions of other patients even although she was going through a lot herself and I learned a lot from her about educating myself about melanoma, not being afraid to question my medical team and advocating for myself. She was also a very talented wildlife photographer and her photographs were very calming.  David and I will be going to the Outer Hebrides shortly and she loved the Isle of Harris so will have a toast to her when we are there and think of her husband and son.    

This reinforces how quickly things can change and makes me determined to keep focused on the Team Shomelanoma fundraising for melanoma research at The Royal Marsden.  I am delighted to announce that the next big fundraising challenge for Team Shomelanoma is the Toubkal trek in Morroco, North Africa’s highest mountain which we will be taking on in September 2022. This will be a tough challenge as we will be climbing in the heat of the Atlas mountains and Mount Toubkal is not to be underestimated at 4,167m. Team Shomelanoma has 16 hikers signed up and training is kicking off shortly. A huge thank you to everyone who has signed up and we are looking forward to another challenging adventure raising funds for the fantastic melanoma research team at the Royal Marsden. More to come on this challenge and how you can support the team in the next blog.

As COVID restrictions have lifted Dave and I were lucky to get away for a mini break to Madrid over Easter. It really is a beautiful city and we had a fabulous long weekend exploring all that the city had to offer. It was the first weekend of warm weather of the year and we could easily identify the Brits in the city. With temperatures in the low 20’s the Spanish were still wandering around in their winter wear whereas you could spot the Brits a mile off in their shorts and vest tops displaying as much skin as possible to get a tan. As we enter May – Melanoma Awareness Month and go on the raising awareness of skin cancer, this is just a reminder to do a skin check once a month and report any changes to your GP or dermatologist.  Melanoma UK has an excellent checklist and I recommend reading through this, I would hate for anyone else to go through the experience of this awful disease just because they wanted to have a tan.

We are coming up to conference season and with COVID restrictions lifting we will once again be having in person conferences this year. I am looking forward to the Melanoma Patient Conference in June and my Oncologist Prof Larkin is giving a lecture on immunotherapy at the Royal Society of Medicine that I am planning to attend. There are many new and exciting advances taking place in treatment of melanoma and this week my Oncologist did an update for Melanoma UK, which provided an excellent update for patients on the latest treatment developments. Here is the short video for those of you that may be interested

Thank you as always for all of your support, with the 5 year milestone passed it is onto the next one, while living life still very much in the present and treasuring every day ( and being very glad to still be here) I am closing this blog remembering the lovely Susannah Archer.     

Cancer · Fundraising · Living with Cancer · Melanoma

Staying Alive with Melanoma Research

One month into 2022, 4 years on my current drug regime I was back onto the cancer treadmill with a bad case of Jan, Scanxiety.  It is a new year and I was back at my second home Marsden HQ for my 3 monthly scans. The time seems to pass so quickly between scans, you have just passed go had some freedom some time to try and put the cancer to the back of your mind and it rears it’s ugly head. Don’t get me wrong, I am massively grateful to still be here 5 years on and the reason for that is due to the huge advances that have taken place in drug treatment for advanced melanoma, 10 years ago it is highly unlikely someone with my stage 4 melanoma would still be here.  Sometimes, I just long for that freedom of life before cancer not being beholden to the ongoing worry of is the cancer growing again. 

I was hoping for an uneventful scan visit and I had my blood tests first and then arrived for my scans. My veins are not great; 5 years of regular prodding and only being able to use the right arm, as I have no lymph nodes in my left arm doesn’t help matters. Anyway as they tried to cannulate me for the scans my veins would not play ball and it took 5 attempts to get the cannula in which made it quite stressful. Whilst this was happening there was an emergency inpatient case on a ventilator who needed an urgent scan whom I walked past and was clearly very ill. I am just not good in these situations and began to feel very queasy as if I was going to pass out. I think it just brought home how cancer is such an awful disease with the ability to destroy so many lives. Anyway I got myself together and the radiography staff are always amazing in helping keep you calm and I was able to get through my scans and get home.  A few days later I was back the hospital to get my results and was delighted to hear that my scan results are good and I can continue to get on with living my life.

Of course as I am the two-cancer queen and whilst the melanoma has always presented the highest risk, the breast cancer also has to be managed. For the last year, I have been taking tamoxifen to control the breast cancer and that has worked in reducing the tumour that appeared in my right breast a year ago to the point where it now looks normal.  I have been having 3 monthly ultrasounds to monitor this and on Thursday this week it was back to the Marsden for the latest ultrasound and also my annual mammogram. I sometimes have a nightmare that all of this time worrying about the melanoma, it will be the breast cancer that comes to haunt me and this was making me feel nervous for this week’s appointment.  I had my mammogram first followed by the ultrasound and the radiographer told me that everything was looking good there was no evidence of the tumour and the tamoxifen was still working. I then saw my doctor and she confirmed that the scans and mammogram looked good and I didn’t need to go back to see her for 6 months. I left the hospital feeling happy and exhausted.  The mental effects on dealing with living with cancer are very real and everyone deals with it differently, there is no right or wrong way, I definitely slept better on Thursday eve after receiving my results and feel hugely grateful to the incredible teams at the Marsden.

Back in  early November,  we were beyond delighted as the Team Shomelanoma Fundraising reached £75,000, which is fantastic news after Phil Hines and Adrian Baker completed 26 miles on the Thames Path. Both of them had been signed up earlier in the year to do the Giants Causeway but had got COVID so been unable to join us. Dave and I joined them for half of the walk and it was a gorgeous afternoon.  A huge thank you to both of them and everyone who has joined the challenges and supported all of the fundraising activities, these have kept me going, created goals to work toward whilst creating a lot of special memories with wonderful family and friends so a heartfelt thank you to all of you.

In late November, I felt very excited to be invited back to the Francis Crick Institute in London to meet with Dr Ben Shum and Dr Samra Turajilic to discuss the latest updates on the melanoma research projects that the funding we have been raising is going towards.  Dr Turajilic leads the Cancer Dynamics Laboratory at the Francis Crick Institute  ( ) as well as working as a Medical Oncologist for the Melanoma and Renal team at The Royal Marsden with Professor Larkin.  Dr Ben Shum is  a Clinical Research Fellow at the Royal Marsden and currently undertaking melanoma research at The Crick Institute.  

As you know, I have been fortunate to benefit from both immunotherapy and targeted therapy for my stage 4 melanoma. But 50% of stage 4 patients do not respond to immunotherapy and normally targeted therapy works on average for 12 months. (I am an outlier in that it has worked for 4 years), As such whilst there has been much progress made in treatments there is still so much more to extend and save more lives.

One particular area of unmet need is Uveal melanoma, which occurs when melanoma develops in the eye. It behaves very differently to skin melanoma and immunotherapy treatment does not work for the majority of patients. Some of you may recall our friend Robin passed away from Uveal melanoma 4 years ago after he had run out of treatment options so I was very excited to hear about this exciting new treatment for Uveal melanoma that the team had been involved in. Dr Shum provided the following research update :

There has been a newly published clinical trial for metastatic uveal melanoma for a treatment called tebentafusp, which has been the first treatment to improve survival in decades. This study included patients 378 patients who were HLA-A*02:01–positive (approximately 45% of persons in the United States and Europe) who did not previously receive any systemic therapy for metastatic uveal melanoma. The results show that on average, patients on tebentafusp survived for 21.7 months, compared with 16 months in those who had a different treatment. 

This is a very exciting landmark step, because previously there was no standard treatment for metastatic uveal melanoma. This new treatment is in the process of being funded by the NHS, however early patient access programmes are now being set up. New clinical trials are also in the process of being set up to investigate the potential role of administering tebentafusp after resection of high risk uveal melanoma (in the adjuvant, rather than the metastatic setting).

The PEACE (Posthumous Evaluation of Adanced Cancer Environment) study is a post-mortem study of cancer patients who have kindly donated their bodies to cancer research. The generosity of these patients have provided us with a unique opportunity to investigate and understand more about all subtypes of metastatic melanoma. At post mortem, we sample many sites of disease, including many that would not be possible to sample during life. This allows us to investigate mechanisms of treatment response and resistance to treatments such as immunotherapy and targeted therapy.

The PEACE study includes 9 patients with metastatic uveal melanoma, and includes some patients who were enrolled in the tebentafusp clinical trial and benefitted from this new drug. In the lab, we are analysing how this drug might improve the immune system response to overcome uveal melanoma through sequencing the cancer genes and examining the tumours closely under the microscope. In particular, we are looking at how the tumour interacts with its microenvironment, of immune and other cells. We hypothesise that tebentafusp may be effective in bringing immune cells to the tumour cells, to help them recognise and overcome the tumour, and this effect may last beyond the duration of the treatment. We are also studying patients with other melanoma subtypes and are very excited to publish this research soon.

It was a wonderful afternoon and thank you to both Dr Turajilic and Dr Shum for spending the time with me. It really brings to life the wonderful research that is being done and how it then translates into the clinic to impact treatment of melanoma patients.  

We are now planning the next fundraising challenges and there will be a full update in the next blog. If you would like to take part in your own fundraising challenge please get in touch and let me know.

Before Christmas I was finally able to have my 50th birthday celebrations with friends and family. It was a gorgeous evening and felt very special to have everyone together and see them in person after the last two years dominated by COVID. We also had a lovely family Xmas and New Year in Essex and Scotland.

After my recent scan results we also made it out to Chatel in France for a long weekend of skiing with gorgeous friends Jen and Paul, her sister Jill and Rick plus their Dad Norrie. We had so much fun, it felt amazing to be back in the snow covered mountains after 2 years and we belly ached with laughter, it was honestly one of the best weekends I have had in a very long time we loved every minute.

On that note, enjoy every day, live life to the max and check your skin regularly. Report any concerns to your GP or Dermatologist , early detection saves lives.

I’ll be back soon with more Shomelanoma adventures. 

Cancer · Fundraising · Living with Cancer · Melanoma

5 Years with Melanoma, What I’ve Learned and Living every day to the Max

As I passed my 5 year cancerversary on June 16, I am feeling very thankful still to be here and also looking back thinking how naïve I was when I initially received my melanoma diagnosis.  In fact just last month when I was at the Holy Trinity and Christ Church schools presenting to all the children taking part in the Skipathon one of them asked me ”Was I shocked when I was diagnosed” ? When I look back on that now the answer was probably no as I suspected something was wrong with the mole, but what I really didn’t realise was when the Doctor said to me , only 50% will survive 5 years and its not a great diagnosis, I did not appreciate the severity of it all.  Many of you know the story from there or you can read the summary here.

Whilst life changed forever on that day in June 2016, and the melanoma rollercoaster had only just begun, one of the most important things that happened was the plastic surgeon Mr Simon Wood who gave me the bad news that I had melanoma also referred me into The Royal Marsden to see Oncologist Prof Larkin. At the time I really wondered why on earth I was being referred there when my PET and MRI scan had been clear. However he knew that I had a thick 4.5mm melanoma that was ulcerated, I was stage 2C at very high risk of spread and how right he was. This decision got me under the care of one of the best cancer hospitals and melanoma specialists and for that I am forever grateful.

I have learned a lot about melanoma over the last 5 years. Just a few weekends ago I was logged onto the ASCO Cancer Conference – the world’s largest clinical cancer conference.  As it was a virtual event they allowed patients to attend this year.  As you know there has been much progress made in treating melanoma in the last 10 years with both immunotherapy and targeted therapy. However 50 % of advanced melanoma patients don’t respond to immunotherapy and many develop resistance to targeted therapy. The results of the latest clinical trials were presented at the conference and there are some promising new drug trial results. However it takes time to get the drugs through the approval processes plus every country has different funding requirements and many patients just don’t have the luxury of time. We have seen with COVID how quickly vaccines have been developed, approved and rolled out and whilst I realise cancer is a very different disease it is still killing hundreds of patients every day. I just hope that some of the learnings from COVID can be applied to cancer and help get these life saving drug treatments to patients more quickly.

It has been a hard few weeks for many melanoma patients in the support group I am a member of. We continue to lose patients far too young and there are many struggling as the disease advances all too quickly and they run out of options. It is heartbreaking watching all of this unfolding. As I have been approaching my latest set of scans I have found myself having strange dreams and whilst I have been feeling well in myself you just never know what is going on inside. Two weeks ago it was time to go back to Marsden HQ to find out what has been happening with my pesky breast tumour.

As many of you know I had a nervous wait a few months ago when a chest lymph node had popped up on my scans that then turned out to be due to my COVID vaccine so I did feel anxious going to my ultrasound to check if the tamoxifen was doing its job on the breast tumour. I am pleased to say that there is now no evidence of the breast tumour and the tamoxifen is doing its job. My doctor told me you are very responsive to drug treatment, a walking miracle and I left feeling massively relieved to have passed go once again for the next 3 months.

I couldn’t switch off yet as I still had the melanoma scans coming up this week and it was back to my second home last Tuesday for a CT and MRI scan. There were no dramas, it all went smoothly and the RMH radiography team were at their efficient best. I didn’t get much sleep on Thurs eve before going into the hospital on Friday to get my results. I had my best friend Jen’s 50th bday party on Fri eve so I was really hoping it was going to be good news and a double celebration and fortunately it was. Prof Larkin told me my latest scans are clear so its happy days and I can now go and have a good summer. As always a massive thank you to the wonderful team at the Marsden who look after me so well, you are all amazing.

I know that I have been incredibly fortunate to benefit from the advances in melanoma treatment over the past 10 years. But there is still so much more to be done and that is why the fundraising for the melanoma research at the Royal Marsden is so important to continue funding the research and helping the team develop further life saving treatments.

Over the month of May (Melanoma Awareness Month) the Shomelanoma team including the wonderful children of Holy Trinity and Christ Church primary school in Chelsea took part in a month long Skipathon fundraiser raising funds for melanoma research at the Royal Marsden. It has been such a successful and fun fundraiser and I want to say a HUGE thank you to everyone who has taken part so enthusiastically and also generously supported the team.  There were many highlights to the month including bringing together friends and family from across the globe, the sheer enjoyment of seeing everyone skipping every day for a month, the fancy dress Friday which the team embraced and the improvement in skipping skills and tricks. It was getting quite competitive by the end of the month. 

The top highlight for me was the day I spent with the children of Holy Trinity and Christ Church School. I spoke at all of their assemblies sharing my melanoma story, the care I receive at the Royal Marsden, why I am fundraising, the wonderful research they are doing and educating them in sun safety. They asked me lots of intelligent questions and were very engaged. After each of the assemblies I had a skipping session with all of the children. It was such an enjoyable day so lovely to see how much they were all loving the skipping and also to see how engaged they all were in the assemblies. A MASSIVE thank you to Headmistress Mrs Avis Hawkins and also Katie Rose for their incredible fundraising support plus all of the children, parents and carers.  Also for my return to school I did forget to address Avis as Mrs Hawkins, black mark for that one must do better next time.  

One of the parents wrote “Such an amazing inclusive fundraiser, our girls have not stopped skipping all month and are so proud of their new skills. Such an important cause and brilliantly organised. “ I was slightly sad when the month came to an end it has been so much fun. I know that for some they were delighted when May 31 arrived and they could put down the skipping ropes.  We raised £6,382, which is just fantastic so huge thank you once again, and an update on the melanoma research projects the funding is supporting will be featured in the next blog.

Next up is the Giants Causeway Challenge, which is now just 2 weeks away. The team will be hiking 26 miles over the steep undulating coastal path of the Northern Ireland Giants Causeway. We are very much hoping that the weather gods will be kind to us and we wont be having a repeat of the Welsh 3000’s 2 years ago when it rained cats and dogs for 3 days. We will be prepared for all eventualities so look out for a progress update in the next blog and all support for the team is much appreciated.

As we celebrated Jen’s fabulous 50th birthday on Friday eve with her special friends and family, I briefly reflected on the fact that 5 years ago I never thought I would still be here and it really is thanks to the wonderful advances of medical science, a kickass medical team, rockstar husband and amazing friends and family. I have hope and options, it’s still one day at a time enjoy and savor every moment and live every day to the max. I hope to catch up with you soon, wear your factor 50, protect and check your skin regularly and have a wonderful summer. I’ll be back soon with more Shomelanoma adventures.

Cancer · Living with Cancer · Melanoma

Escaping Lockdown with Stage 4 Melanoma and Milestone Birthdays


After 100 days of lockdown shielding I was feeling euphoric to leave London for a day of hiking on one of my favourite hikes in the South Downs over the Seven Sisters to Beachy Head. As many of you are aware, I have been in the shielding category, which has been a big challenge. Even though I have been going out more in the past month I was still feeling quite trapped in the city and had major cabin fever after spending so much time at home. The sight of the sea and the cliffs was good for the soul and felt amazing, it was so quiet, and we hardly met anyone on the 20km hike. It was a shame that the pub at Beachy Head was not yet open as that is usually the half-way lunch spot but we stopped near there and had our picnic before heading back. It was a stunning day and I really loved every minute. My legs on the other hand were screaming as they are out of hiking practice; definitely more training required before we take on the next challenge on the Giants Causeway in October.

Next up was my big milestone birthday, on July 12 I turned 50. At the start of the year I was feeling so excited about my birthday as we planned a big party in a gorgeous house we had rented in Kent. The girls were also planning a trip to Ibiza but as the lockdown progressed it became obvious that both the planned party nor the trip to Ibiza was going to be possible with the COVID restrictions so they have been postponed to next year and I’ll be staying 49 for an extra year. I feel quite emotional and grateful to be turning 50. I think before my stage 4 melanoma diagnosis I may have been dreading reaching such a milestone age and worrying about getting older. Now that has all changed, every birthday is to be celebrated, (this one even more than most) as it represents another year that I am still here, healthy, happy and able to make the most of every day with family and friends. I distinctly remember almost 3 years ago to the day being discharged from Marsden HQ after my 3 week inpatient stay after experiencing extreme autoimmune hepatitis from my immunotherapy treatment thinking would I see the next Christmas far less dream of seeing my 50th birthday. So the fact, I am celebrating turning 50, I feel hugely grateful to the fantastic melanoma team led by my Oncologist Prof Larkin and Nurse Nikki Hunter and all the team at the Royal Marsden for continuing to look after me so amazingly well. You are all superstars.

Although the birthday party was postponed, I had a gorgeous bday picnic at Cannizaro House in Wimbledon with family and friends. I was so excited to see everyone as I had been missing them all during lockdown and we had a gorgeous day. I was woken in the morning bright and early with my good friend Denise calling from Hong Kong where David and I used to live. As I was opening my birthday cards, in the middle of the pile were the forms for my blood tests that had been sent from the Marsden. I quickly put them to one side, as I did not need to be thinking about melanoma on my big day. The sun shone and we had lots of fun, I felt very spoiled and after the last 4 months of lockdown it felt that I was finally escaping. The next day David and I escaped to the Pig Hotel in Kent for a couple of days, which was really gorgeous. The hotel had put lots of safety measures in place to protect guests and staff against COVID and it was really lovely to eat out again in a restaurant after so much time at home. We then spent the day walking along the Kent coastline from Bottany Bay to Broadstairs, which was stunning. Here are a few pics. We both returned to London feeling rejuvenated and rested.

By Friday I was back at Marsden HQ for scans, mask on. The hospital was so quiet; I was quickly taken for my MRI and CT scan. Since I was last there in May it is now mandatory to wear masks in the hospital and I did wonder about needing to wear a mask in the MRI scanner along with the face cage, which is already very claustrophobic. Fortunately I was allowed to remove my face mask which was a big relief. As I had such a lovely birthday week and was feeling on a big high (I managed not to think too much about the scan results over the weekend) It was gorgeous weather and we met up with friends Phil and Jo to go hiking which took my mind off the scanxiety. I had also been feeling really well although that can lull you into a false sense of security. On Monday morning I was back at the hospital for results and fortunately the wonder targeted drugs continue to work over 2.5 years on and my melanoma is under control. This was just the best birthday present and a lovely finish to my bday week. I also saw my nurse Nikki which was lovely to catch up with her in person, as I hadn’t seen her since Jan as the consultations have all been taking place by phone. After picking up my drug supply it was off for breakfast with David to celebrate, we were too early for the Ivy café so that will have to wait. I feel very grateful that my treatment has not been disrupted by coronavirus, scans took place as scheduled, and I felt very safe at the hospital.

However the COVID situation has been very worrying for many cancer patients who have had their treatments postponed, scans cancelled and recently CRUK estimates that an additional 35,000 extra deaths could result due to treatments being deferred or cancers going undetected. Deborah James (aka) Bowelbabe a fellow Marsden patient recently presented BBC Panorama “Britain’s Cancer Crisis” which laid bare the impact of coronavirus on NHS cancer care and included some really heartbreaking patient stories.

We have seen this also in the melanoma patient community and this has a significant impact on patient survival. We are seeing too many young lives lost to melanoma tearing families apart. Covid 19 is also having a huge impact on cancer research and just a couple of weeks ago CRUK which is responsible for the funding of over 50% of UK cancer research announced it was making 500 people redundant and £44m cuts to its research.   

The Royal Marsden cancer charity had also been affected and has been running an emergency appeal. I recently wrote a blog for the charity and also spoke to the team in a short video about my experience at the hospital during coronavirus and why it’s so important to continue supporting the charity during this time.

Team Shomelanoma are back training for the next big challenge on the Giants Causeway at end Oct. It has been a shock to the system getting the legs back into hiking action but it has been good to be back out in the Surrey Hills training with the team. Next up we will be off to Scotland to see the family and tackle a couple of munro’s and we have everything crossed that the challenge will be going ahead. More details to come in the next blog.

As the heatwave returns to the UK this weekend we had the news today that Brits are spending 40% more time in the sun during lockdown than they did last year with over a third of us saying they don’t protect their skin in any way in their own outside space. The sun isn’t only strong abroad so please remember to protect your skin slap on the factor 50, stay covered up and out of the midday sun and most importantly don’t get burnt. Early detection saves lives, melanoma cases are on the rise in the UK and we are still losing 7 people every day to the disease. If you do notice any changes get an appointment booked with your GP or Dermatologist.

Thank you as always for all your support and look out for more Shomelanoma adventures coming your way next month.












Cancer · Living with Cancer · Melanoma

Lockdown Life with Stage 4 Cancer


Well what a difference since the last blog update! We have now been in lockdown for 8 weeks and to say there have been ups and downs would be an understatement. Whilst I have become somewhat used to dealing with the emotional rollercoaster of stage 4 cancer, I have found dealing with the restrictions of life imposed by Coronavirus pretty hard. I am one of the 1.5 million people classified as extremely vulnerable which brings with it an additional layer of restrictions known as shielding and involves staying in your house and not leaving for 12 weeks. I contacted my Oncologist for clarification and he told me there was no evidence that the targeted drugs I was on have a major impact on the immune system. However he said anyone with metastatic cancer is unlikely to have a completely normal immune system so the conservative position would be to follow the advice and delay getting the virus as long as possible until they know more about it. I felt on a major downer and so disappointed after hearing this news and the thought of spending 12 weeks not leaving the house just felt awful. I had been feeling so well and the training for the triathlon was just kicking up a gear and now I had to stay locked at home. I knew that the advice was for my own good but being totally honest I didn’t feel vulnerable and in fact felt very fit and well. I just had to take some time to get my head straight and in the correct frame of mind to cope with the situation and take it day by day. I have drawn from my experience of dealing with cancer to help but its fair to say by the end of week 3 I was going stir crazy.


For the first 3 weeks, I followed the stay at home guidelines by not leaving the house at all. I wasn’t sleeping particularly well and with the construction of the NHS Nightingale Hospital in the news, I kept having nightmares I would end up there in East London. I have been doing doing regular workouts in the garden plus yoga/pilates via zoom and we have been very lucky to have good weather. By the end of week 3, I had a really bad dose of cabin fever and so we decided to get up early at 6 am and do a circular walk up to Wimbledon common. At this time it is very quiet, there are a few dog walkers and joggers and it felt so good to be out of the house walking in the fresh air, seeing all of the spring blooms and enjoying the sunrise. Since then David and I have been going for early morning walks twice a week and have ventured a little further by enjoying Richmond Park, which has been truly beautiful, peaceful and very quiet. The sky has been so blue there were no cars or bikes and as we walked into the park the first time, the mist was just lifting and it was stunning. One of the benefits of the pandemic has definitely been the cleaner air, no pollution and the chance for nature to recover. We have even seen more stars in the sky, than at any time over the last 10 years. I have been really missing our hiking as normally at this time of year we are out in the hills training with the hiking gang for the latest challenge. Seeing photos of fields full of oilseed rape and bluebells, it really does make me want to escape London as soon as possible to the countryside. I can’t wait to get back to the hills and mountains of Scotland.


The complete focus on the Coronavirus situation has been especially worrying for cancer patients. Many have had treatments postponed, scans cancelled and analysts estimated that an extra 18,000 people could die from cancer due to treatments being deferred and/or cancers going undetected and/or treated. This is extremely worrying. In addition many clinical trials and cancer research projects have been halted as resources have been diverted to dealing with the virus which will cost further lives in the long term.

The Royal Marsden has been the cancer hub hospital for London. My nurse called me a month or so ago and said they were going to move my scans back a month so that I didn’t need to come into the hospital which I felt fine about but then the appointment confirmation arrived for mid May. At first, I was quite relieved at the prospect of pushing my scans back a month as no one really wants to be visiting a hospital right now, however, I am also acutely aware that the fact I am still here 3 years on from my stage 4 diagnosis is because my melanoma progression has always been picked up early on scans. So last Thursday it was off to Marsden HQ for my CT and MRI scans. It’s a couple of months since I was last in the hospital and during my visit I felt very safe from the security guard on the front entrance checking my appointment letter to the screens that had been put in place at registration, the social distancing in the waiting room to the radiographer with her PPE. The hospital was very quiet as there is currently no visiting, you are not allowed to have anyone with you and most clinic appointments are taking place by phone. As I headed home I was feeling quite calm and tried to forget about the results until Monday morning. Of course by the time Monday arrived I was not feeling so calm, the nerves had kicked in and I spent the morning pacing up and down the lounge waiting for the phone to ring. The current phone consultations make the appointments efficient but I did think how difficult this must be for patients who don’t know their Doctor very well and also its not a good way to receive bad news. Fortunately the phone rang and my doctor told me the news that my latest scans are good and the targeted drugs Debrafenib and Trametinib continue to work 2.5 years on. I felt so delighted and relieved but no trip to the Ivy Café Chelsea to celebrate it was a coffee and cake at home instead.


I am now just longing to be making the most of every day doing all of the things I love seeing family and friends (the zoom calls are ok but just not the same as seeing everyone in person) getting out in the hills with the hiking gang and up to Scotland to see the family and breathe in the fresh air. We had also planned a lovely trip to the South of France for early May, one of my favourite spots in the world where I spent a year at university, but that was of course cancelled. Hopefully we can try and go in the autumn. A girly trip to Ibiza in June has now been moved to next year. Hopefully training for the next challenges will be getting back on track; the hike in Ireland on the Giants Causeway is scheduled for July but we expect that will probably be moved and the triathlon has been moved to September.


It would also be good if the government could clarify what is happening next to the 1.5 million of us who they have advised to shield at home. There are a lot of people on the list with a lot of different underlying health conditions. With the exception of my stage 4 cancer I am currently fit and well (more fit than the average person my age) and I don’t want to be living the next few months trapped in the house. It’s absolutely not good for my mental health and its also hard as lockdown restrictions are lifted for everyone else. I wont enter into the governments handling of coronavirus that’s for another time, lets just say in my last blog I felt the British government slept walk into this crisis and with such a high loss of life in the UK that has turned out to be the case.

As a reminder to everyone May is Melanoma Awareness Month and with COVID 19 dominating the news there has been very little coverage this year. The government have being doing its best at press briefings to encourage the British public to get out and sunbathe but there has been no mention of wearing factor 50, avoiding getting burnt and checking your skin for any abnormalities or changes to moles. Early detection saves lives, melanoma cases are on the rise in the UK and we are still losing 7 people every day to the disease. If you do notice any changes get an appointment booked with your GP or Dermatologist to get it checked out. If you want a tan this summer please fake it, there is nothing healthy about baking yourself in the sun. For more information see Melanoma UK

Here is the link to my patient story with commentary from my Oncologist, which appeared in the latest edition of the Marsden magazine (p12)

I hope you are all well and look forward to seeing everyone soon. I’ll be back next month for more Shomelanoma adventures hopefully out of lockdown.















Mastering the Melanoma Mind Game – Happy 2020

I have been thinking a lot recently about just how much melanoma messes with your mind. This can manifest itself in different ways and set me off on a whole spiral of worry in the last month. The feel good factor I had after the Peruvian holiday quickly disappeared. It had started off in Peru when I woke up one morning after having a very vivid dream (or nightmare) that my fingers needed to be amputated due to the fact my melanoma had returned (all in my dream). In reality, just before Christmas I started to feel a strange pain in my fingers and it was worse when I woke up in the morning. During the day the pain lessened. I checked the side effects of my drugs and joint pains are on the list and I also know from the melanoma support group that some other patients on the same drugs had experienced this too. However the thought that this may be something more sinister was at the back of my mind.

After Xmas the pain was still there in my hand and I also felt that my fingertip was feeling numb. It was two years ago when my gums became numb that led to the early discovery of a small tumour in my brain which was affecting the nerves, therefore my mind was running into overdrive that the fingertip could be related to further nerve damage. I had scans coming up at Marsden HQ so I knew that if there was an issue all would soon be revealed. Last Friday afternoon I was back in Chelsea for my scans. This was not without drama. Every time I go for scans I have a cannula put in my arm so that they can inject the radioactive dye to show up any cancer cells on the scans. As I have no lymph nodes in my left arm this is always done using my right arm. After 3 years of treatment, monthly blood tests and scans every 2 – 3 months the veins in my right arm are not in the best condition and last Friday it took six attempts to find a vein for the cannula to go into my arm. Normally I don’t find this process stressful but on the last two visits it has taken several attempts, making it much more stressful. I think the fact I was already feeling worried made me even more anxious. The radiology team at the Marsden are fantastic, these situations aren’t easy for them either and they do their absolute best to calm you down. I left the hospital with an arm that looked like I had been through a couple of rounds with Mike Tyson.


By Monday morning I was in nervous wreck mode. I actually started to wonder if my dream back in November about the finger needing to be amputated was a premonition (the mind was playing games) of what was to come. David was amazing as ever keeping me occupied and was his usual calm self even as I had convinced myself the melanoma had progressed and the rollercoaster was about to go back up a gear. My scans had been very late on Friday afternoon and my nurse advised that that they were awaiting the radiologist to sign off the CT scan before we could have the appointment. Immediately sensing my rising anxiety levels, my nurse tried to reassure me by saying, “It doesn’t mean anything to worry about” however, it all added to my overall anxiety so the wait felt even longer. By the time I was in the door and sat down being told that my scans were good, I felt like I was about to burst (I probably looked that way too) and it was such an overwhelming sense of relief. I hadn’t felt as bad going into a scan results appointment for a long time and was also exhausted. The pains I was experiencing in my hands were put down to side effects of the drugs or nerve pain and as the week has gone on my fingers have been feeling better. So the mind games did play a big role in how I was feeling in the run up to the latest scans and as other cancer patients will know its hard not to assume that every pain you have is cancer related. I think I am quite in tune with my body and how it is feeling but I was pleased to be proved wrong on this occasion and massively grateful that the targeted drugs I am taking are still keeping my melanoma under control. Of course the happiness that the drugs are still working for me is tempered by the fact that for many patients the targeted drugs that I am on develop resistance and/or immunotherapy doesn’t work for them so they are currently struggling trying to get on drug trials or running out of options. This is why its so important to continue supporting pioneering melanoma research and raising awareness to help prevent melanoma by protecting our skin, doing regular skin checks and getting anything suspicious checked by your GP.


Exercise has helped me with my mental health over the last 3 years and I am now ready to turn my focus to the 2020 challenge and get training for a triathlon. I have signed up for the Blenheim sprint triathlon on May 31 with some friends, which involves swimming 750m, cycling 20km and running 5km. Who knows if I am taking on more than I bargained for, I am not a great swimmer BUT am planning to have a couple of swimming lessons and then practice, practice practice. If you would like to join the Shomelanoma team and join me in the triathlon challenge it’s not too late and I’d love to have you. Full details are here.

Just let me know if you’d like to sign up and I can ensure you are added to the team. My nurse at the Marsden asked David if he would be joining me for this challenge to which he responded absolutely NOT. I’ll keep you posted and entertained with the swimming attempts over the next few months.

There is more to come on this year’s Shomelanoma fundraising challenges and adventures. If you would like to take on your own challenge please get in touch. Wishing you all a happy and healthy 2020 and thanks as ever for all of your support it means the world. As David said on New Years Day Keep searching for your window on the world, above all enjoy yourselves and have fun. Here’s the lovely card my good friend Jen sent me this week, Thanks for listening.