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.

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 https://shomelanoma.com/about/

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.

https://www.melanomauk.org.uk/pages/category/skin-check

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 https://www.melanomauk.org.uk/news/melanoma-update-april-2022

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  (https://www.crick.ac.uk/research/labs/samra-turajlic ) 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

Frequent Flyer at Marsden HQ – Walking the Cancer Tightrope 

As a marketer I am used to writing attention grabbing headlines, but in this case it’s strange dreams that that have prompted me to question, are the wonder drugs still working?  It’s also usually a sign that scans are fast approaching. Of course I always have everything crossed that my wonder drugs continue to work and I haven’t arrived at my sell by date ( they work on average for 12/14 months) and I have been on them almost 4 years. That may sound dramatic but as most fellow stage 4 cancer patients know you are only as good as your latest scan and sometimes the whole process of living in the window of the next 2-3 months feels exhausting.

I have been quiet on the blog front for the last 3 months but am back with a big update and the last 3 weeks have been particularly busy on the medical front after a quiet summer. At the end of September,  David and I escaped for a week to Lefkada (Greece) more of that later. I knew that when I got back there were a slew of medical appointments awaiting that I had tried to put at the back of my mind. October arrived and I was back at Marsden HQ for my latest melanoma scans.  A lot of my medical appointments over the last 18 months have been remote (obviously you have to go into the hospital for scans) but I prefer getting my results in person from my doctor. I used to have monthly phone consultations but since the summer I prefer just going in for a face-to-face appointment every 3 months when I get my scan results too. If I feel any issues in the meantime I contact my team and they arrange for it to be investigated. This gives me breathing time where I try not to think about the cancer, get on with living my life and I find it helps my mental health.  I have also been on my melanoma drugs almost 4 years so my body is used to them and I haven’t been experiencing much in the way of side effects. I turned up for my scan results 2 weeks ago to be told that everything was good on the melanoma front so I felt happy about that but the scan had detected a cyst on my ovary. Of course with the frequency of scanning I have it is not surprising that other things may be picked up. My Oncologist told me that this was not his area of expertise but if I wanted it investigated he could refer me to the gynecologist for follow up. As I had my breast cancer follow up scheduled the following week I decided to discuss it with my doctor then. I left my appointment feeling happy that the melanoma was still under control, but there was a nagging doubt concerning the ovarian cyst. I did feel better after speaking to some girlfriends and understanding that it was quite common.

Last week I was back at the Marsden for my breast cancer check up. I had an ultrasound and follow up appointment to check that the tamoxifen I have been taking is still effective. Fortunately that was all good but my doctor agreed that the ovarian cyst definitely needed followed up and referred me for an ultrasound and blood tests the following week.  

This week, it was back to the Marsden for the third week in a row for a regular dermatologist appointment and to check up on the pesky ovarian cyst.  I have dermatology check ups once a year and normally they are uneventful. This week the dermatologist found a basal cell carcinoma on my back. This is a skin cancer but is the less dangerous more common skin cancer than melanoma. It is also a side effect of the targeted drugs that I am on. The dermatologist removed it immediately there and then with liquid nitrogen, which was a bit painful but over quickly.  It was then onto the ultrasound to check out the ovarian cyst. I felt really anxious about this as I had been having bad dreams and kept thinking I am already dealing with 2 cancers which is bad enough surely there wont be a third as well. Fortunately it was ok and I was told that the cyst looked normal and there was nothing to worry about. I felt so relieved as I left the hospital after what had felt like a very long day. I do have to say the staff at the Marsden as always were amazing looking after me and given that I attend all of these appointments on my own just now they are always caring, reassuring and comforting whilst you are dealing with stressful situations.

Over the summer and early Autumn Team Shomelanoma has been out on more adventures raising funds for melanoma research at The Royal Marsden. In July after being postponed twice it was third time lucky on The Giants Causeway Marathon Hike. We were blessed with amazing weather and had a glorious weekend hiking in Northern Ireland’s stunning Causeway Coast. We missed 3 of our teammates due to COVID including Phil who plans most of our training walks. Both he and Adrian will be hiking 26 miles in early November on the Thames Path. In the meantime planning and discussion has already started for next year’s hiking challenge watch this space if you would like to join us. 

Last month Melissa, Becky and Sarah took part in the Bleinheim Triathlon, they all did fantastically well and we had a fun day supporting them on a beautiful day. The plan is to return next May to take part in this one. If you would like to join us entries open soon and we would love to have you join the team.  My gorgeous friend Jen got her hiking boots on to take on The Chiltern Way 50km in late September and successfully completed it in just over 10 hrs. I love the photo of her at the end of her hike resting her weary legs well done Jen. A couple of weekend’s ago we had the return of The Royal Parks Half marathon, this year without Dave running he will be back next year. Chris and Fraser did a fantastic run on a new course and were both running the race for the 4th time. Unfortunately Steve Baldock who had trained so hard for this race was also struck down by COVID but will be back soon for another half marathon as soon as he is recovered. A special thank you also to Phil Hines parents Margaret and Ken Hines who had their friends and family support Team Shomelanoma fundraising in lieu of gifts for their 90th birthday. Cheers and a huge thank you to everyone who has undertaken a challenge and supported all of the fundraising it is hugely appreciated. We are currently just under £200 away from the £75k,  which is amazing. There will be a full update on the melanoma research in the next blog.

Over the summer we have also been travelling around the UK to catch up with family and friends, which included a lovely trip to Scotland, the Peak District and we have just returned from a gorgeous weekend in Devon. We also felt very fortunate to get away to Lefkada in Greece for a week at the end of September, which was stunning and we just loved every minute. Here are a few pics from the recent trips.

With the green light back on to go and live life to the max, I am back planning more Shomelanoma adventures. It’s 5 years almost to the day since we had the adventure of a lifetime climbing Kilimanjaro in Tanzania with a very special group of friends and since that trip I have really loved going out and taking on all of the different challenges. It has kept me mentally sane (something David is  pleased about) created many happy memories and funny moments, raised a lot of money for two much loved charities the Royal Marsden and Wellchild which are both very special for the wonderful work that they do.

As we approach the winter and get more covered up please remember to do a monthly skin check. The Melanoma UK website has an excellent skincheck guide https://www.melanomauk.org.uk/Pages/Category/skin-check. If you have any changing moles or spot anything you are worried about get it checked out. My motto is always if in doubt get it checked out.

I’ll sign off for now and will 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. https://shomelanoma.com/about/

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.

https://www.justgiving.com/fundraising/shiona-ramagegiantscauseway

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 · Fundraising · Living with Cancer · Melanoma

Milestones, an anxious wait and a new challenge

It is feeling like we have turned a corner after what can only be described as an annus horribilis.  One year on we have been remembering all those who have tragically lost their lives not just from COVID but cancer, heart disease, strokes and other illness.  We are also feeling thankful to all of key workers especially in the NHS who have kept going through unimaginable stress.  As spring arrives we can start to feel hope with a vaccine programme that is currently going well and I cant wait to see family and friends again.  As I write this I am feeling very thankful to still be here 4 years on from that horrible day on Mar 31, 2017 that I was told melanoma had been found in my brain.  A BIG thank you to the fantastic team at the Marsden still doing a kick ass job of keeping me alive and kicking.

As you know from my last blog, 2021 started for me back on the cancer rollercoaster.  Many fellow patients will identify with this rollercoaster as it goes on from scan to scan (currently every 3 months) but doesn’t take much to disrupt the apple cart.  After the worry of the numbness in the ear in January I turned up for my latest scans feeling a bit more relaxed.  As I now have breast cancer checks along with the melanoma scans the team at RMH had booked all of my tests in for the same day so that I didn’t have to return to the hospital over several days.  It was all going well, I had my CT and MRI scan and turned up for my ultrasound on my breast when I noticed that my arm was bleeding badly.  The nurse patched me up and the ultrasound went fine and I set off to get some lunch, as I was starving not having eaten all morning.  

I usually enjoy a trip around Chelsea but with everything closed and it being a bitter cold day being sat on a bench outside Marsden HQ didn’t hold the usual joy.  As I munched my sandwich I noticed that blood was still running down my arm so headed back into the hospital where I was due for blood tests.  It seemed my vein had burst after the cannula was removed from my scans so the nurses were fantastic as by this point I was feeling faint probably a combination of the lack of food and the stress of seeing my blood covered arm that made me look like an extra from a horror movie.  It was decided to leave the blood tests to the next day they gave me cup of tea and a biscuit made sure I was ok and I headed off for my consultation with my breast doctor.  This was all going well; the tamoxifen continues to work when she noticed the results of my CT scan that had taken place in the morning had come through.  The scan showed I had a chest lymph node that was “indeterminate”, this could be caused by the cancer or inflammation but could also be a result of the COVID vaccine which I had recently and has resulted in several patients having lymph node anomalies pop up on scans.

Anyway I left the hospital with my head in a bit of a tailspin especially after the day I had just had.  I jumped in a taxi to head home and as I opened the door my nurse Nikki had called David as they had been told I had received my CT results and left the hospital worried. I spoke to her as soon as I got home and she reassured me not to be too concerned and I had my consultation with Prof Larkin the next day and we would discuss it further then.  I felt better and by the time I returned to the hospital the next day I was feeling less worried and in a better frame of mind than the day before which had been long and stressful.  After the meeting with my doctor at which my MRI brain scan results had also come through and these were fine it was decided they would bring my next scans forward a month to double check the chest lymph node.  He was positive the brain scan was good after all the concern in January, the tamoxifen was working for the breast cancer and fingers crossed the chest lymph node is nothing untoward. I left the hospital feeling much happier and have managed to put it to the back of my mind.   

One of the positives of my cancer diagnosis is that it has made me really focus on what’s important in life. The last year has been hard for everyone but it has taught us not to sweat the irrelevant and make the most of every day plus appreciate the small things.  I have also enjoyed channeling my energies into fundraising to support ongoing melanoma research projects at the Royal Marsden. It’s my way of saying thank you and giving back whilst the challenges keep me fit and active along with those that I love. The challenges have been curtailed for the last year due to COVID but are about to kick back into gear with a new challenge the Shomelanoma Skipathon , which will be taking place during the Melanoma awareness month of May.  Team Shomelanoma will be skipping  for 10 mins every day in May, having fun, counting their skips, getting fit, sharing photos and videos and raising valuable funds for melanoma research at the Royal Marsden. We would love you and your kids to join us. Full details are available here  https://shomelanoma.com/fundraising-skipathon

I also have to say a huge thank you to Phil and Sharone Slavin who made a very kind donation to melanoma research in memory of Phil’s father who sadly passed away last year.  In addition, Russell and Anna Bliss have also made a kind donation to the upcoming Giants Causeway Hike, which is due to take place in mid July.  The support we have received over the last 4 years for the fundraising has been amazing and I want to thank everyone who has participated in all the fundraising activities and generously supported them. This means the world to me, the melanoma team at the Marsden and the charity so a HUGE thank you. It also keeps me motivated to continue and also helps keep me fit and mentally well.

If you would like to join any of the upcoming fundraising challenges or organise your own please let me know. I will be doing a full update on the melanoma research projects the funding is supporting  in an upcoming blog.

As the lockdown starts to lift, I am excited to get back out to see friends and family and very much looking forward to a trip north of the border to see the Scottish family plus a trip to one of our favourite places the Outer Hebrides. We have been spending the last few weeks with regular trips to Richmond Park, which is a pretty beautiful spot and with the arrival of spring is looking lovelier each week.  It will be good to go further afield and catch up with the hiking gang soon as we have been missing them all and all of their banter.

As the weather starts to heat up with the UK forecast to have a mini heat wave this week we will no doubt see the excitement of the British public stripping off as soon as they see the sunshine. Remember that UV damage is cumulative and to protect you skin and stay out of the mid day sun. Most importantly don’t get burnt and if you do notice any changes to any moles or new skin lesions get them checked out by a GP or dermatologist. The motto is if in doubt get it checked out and don’t delay.

Thank you as always for all of your support. I’ll be back soon to report on an update on the Skipathon and to offer some training tips. In the meantime happy skipping and I’ll be back with more Shomelanoma updates soon.

I

Cancer · Fundraising · Living with Cancer · Melanoma

Back on the Cancer Rollercoaster and Vaccine Time

I hope that you are all surviving lockdown 3, it is starting to feel like groundhog day in the UK and when I woke up one morning last week I said to David, can you just wake me up when we get to spring.  In the last month there have also been more trips to Marsden HQ. I had settled into my routine and was happily going along with my 3 monthly scans and telephone consultations.  After the good news of my melanoma scans in early December, just before Xmas, I found out that the biopsy done on the right breast was cancerous and whilst it is contained and very small it does now require treatment.  I felt disappointed as if dealing with stage 4 melanoma wasn’t enough now there was another cancer to be dealt with too. However on a positive note it was 4 years since the precancer breast cells were originally discovered and the tumour was very small.  Just before Xmas I returned to the Marsden to discuss the planned treatment for the breast cancer.

I can’t tell you how good it is that both of my doctors are at the same hospital. I had a nightmare experience 4 years ago when this was not the case. I wouldn’t even like to think about how this would have been in the current COVID crisis.  Before my appointment both of my doctors had discussed my situation and there are two options for my treatment path and I was back to discussing the competing cancers risk assessment.  The first is that I take the drug tamoxifen with a possible course of radiotherapy if required. The second option would be a mastectomy with full reconstruction. I have currently started the tamoxifen and so far feel ok with no side effects. This week I had an ultrasound at the Marsden, which showed that I am responding to the treatment and the tumour has almost halved in size and is now almost undetectable which is good news. At this point I wont be needing any further treatment but will continue with the tamoxifen and be regularly monitored.

Not long after my last melanoma scans in early December, I started to experience a strange numb sensation in my earlobe.  Over the Xmas holidays I tried to put this to the back of my mind but I started to have this nagging doubt that something might be wrong. Three years ago when the last tumour was found in the brain I experienced a numb feeling in my mouth and the numb feeling of the ear was on the same side. I had a telephone appt with my Oncologist in mid January and told him about my concerns. He said given my previous experience, this had to be taken seriously and they were going to organize an urgent MRI scan of the brain. My head went into a tailspin as I became convinced that my targeted treatment had stopped working. I have been on my current melanoma treatment for 3 years and I have been fortunate that it has worked for so long for me as on average it works for patients for 12 months before the melanoma develops resistance to the drugs.

My MRI scan was organised for the following Monday and I had my follow up appointment scheduled for the Friday. My doctor asked me if I wanted to come into the hospital for the appointment rather than getting the results on the phone and I decided this would be better. It was a long few days  and although I tried to keep myself occupied I was feeling extremely nervous.  My mind was racing and I already had the next treatment plan set out in my head.  In addition, due to COVID you are not allowed to have partners in the hospital with you so I had to attend the appointment on my own. Friday morning arrived and I put on my big girl pants and headed off to the hospital.  David did come with me but he had to wait outside. Luckily I didn’t have to wait long for my appointment and I was very surprised and relieved to hear that the brain scan looked good and there was no change since the last scan in early December.  My doctor asked if I had noticed that the numbness in the ear lobe had been getting worse and I said no it hadn’t gotten any worse. As I mentioned I do have nerve damage from the previous tumour so its possible that could be the cause or it is unexplained. He said we would monitor it and leave the next scans in as planned. I left the hospital to find David sitting on a bench outside awaiting the news and whilst there were no trips to the Ivy Café Chelsea due to lockdown there was time for a coffee and a big slice of cake en route home.  

 Whilst I am feeling hugely grateful that my melanoma is still under control, the last couple of weeks have really highlighted to me how quickly things can change. You can be lured into a false sense of security feeling well and then strange symptoms appear and you immediately assume there is progression of the disease. It is hard to deal with mentally as you obviously start worrying and thinking the worst. I was also reminded how awful this disease continues to be as a friend I had met through an online support group passed away recently and I couldn’t stop thinking about him and his family.   

Like a lot of people I have found the latest lockdown harder than the previous ones. Of course it is mid winter and I am missing seeing friends and family. I was so excited to be going to Scotland for Xmas so that was really disappointing not to get there as planned. The COVID crisis has now been going on for so long there is a feeling that you are wasting time.  On a positive note I did have my vaccine this week, which was good. Due to my treatment I am classified in the highly vulnerable group (even although I don’t feel highly vulnerable) and I headed down to the local church last Tuesday. I was very impressed by how efficient the whole set up was, the nurse did ask me if I worked for the NHS to which I responded no I am in the clinically vulnerable group. I felt fine after the vaccine except for a sore arm for a couple of days and I should get my 2nd jab within 12 weeks.

I have also signed up to the Royal Marsden/Crick Capture Trial, which is investigating how the coronavirus affects cancer patients and the effects of anticancer treatments such as chemotherapy, immunotherapy and radiotherapy on the course of COVID 19 infection. The aim is to develop better treatments to manage these patients. It involves having additional blood tests when I attend the hospital and completing questionnaires about symptoms and risk factors for COVID 19.  

I have been keeping myself sane going out for early morning walks on Richmond Park, Wimbledon Common and Hyde Park which has been uplifting and it really makes you appreciate the small things in life. Last Monday a beautiful day in London I met my good friend Liz and we walked around Hyde Park, it was stunning and I have to say London looked at its glorious best. I simply cant wait to get back out hiking in the hills and am so hoping that the restrictions are lifted by May so that we can escape to Scotland and revisit the Outer Hebrides.

I am also back onto planning the 2021 Shomelanoma challenges to continue supporting melanoma research at the Royal Marsden. If anything the last month has simply highlighted how much there is still to be done to find effective treatments to help all patients with this awful disease. It may be the middle of winter but please continue to do your monthly skin checks. This video from Melanoma UK is really helpful. https://www.melanomauk.org.uk/news/21-of-melanomas-undiagnosed-during-covid-19

Thanks as always for all of your support and I’ll be back with more Shomelanoma updates next month.

Cancer · Fundraising · Living with Cancer · Melanoma

Its December 2020 – The Forgotten 2nd Cancer

We have arrived in the final month of 2020 and for many of us I am sure we will be glad to see the back of 2020. What a contrast to Nov/Dec 18/19 when I was fortunate to go on the adventures of a lifetime to Argentina and Peru. I have had the photos pop up for the last month to give me a reminder of those amazing trips. Back in reality the latest national lockdown has ended and we are feeling hopeful about a trip to Scotland to see family over Christmas. But first it is December and back to Marsden HQ.

As some of you may recall 4 years ago I discovered that along with melanoma I also had DCIS (precancerous breast cancer) found in my right breast. As if dealing with one cancer wasn’t bad enough there was also a second to contend with. At the time, I had a horror month of a lot of tests and appointments at different hospitals across London with different doctors and several opinions and the situation only improved after all my medical care was all moved to the Royal Marsden. Shortly after this, the melanoma advanced to stage 4 and the precancerous breast cancer was put on the back burner as the melanoma was treated as high priority.  As my Oncologist explained to me its all about managing risks. Last month I received a reminder to go for a mammogram so it was time to revisit and check up on the forgotten 2nd cancer.  

I had a mammogram 10 days ago and a follow up appointment to review the results. My doctor said the mammogram looked very similar to 4 years ago which I took as positive but there was one area of thickening that they wanted to double check so they were sending me for an MRI, ultrasound and biopsy. I have to admit that I left the hospital with my head in a bit of a tailspin.  As I have been so focused on melanoma for the last 3 years and have felt very fortunate that it has been brought under control and for the last 2 years I have been able to live a fairly normal life with minimal side effects from the drugs I am on.  I was feeling that a Pandora’s box had just been opened and the December factor was about to rear its ugly head.

It just happened that last week, my regular melanoma scans were also scheduled so it was a week of almost daily trips to the Marsden. I had an MRI scan of the chest; this was an uncomfortable experience as you are face down breasts in cones and arms over your head as you go into the scanner.  After lying still in that position for half an hour, I came to the conclusion that this made the brain scan seem relaxing and I never thought I would be saying that. On Wednesday, I had my body CT and MRI of the brain plus blood tests which proved to be a challenge as one of the veins in my arm burst.  Feeling stressed, I left the Marsden and headed off for lunch with my good friend Liz and chatting with her helped to calm me down. It is amazing what a bit of lunch and a cup of tea can do for you so big thank you Liz as by the time I returned to get the blood tests done again in the afternoon it was quick and successful and I was able to head home for the day.

On Friday morning it was back to the hospital for an ultrasound and biopsy of the right breast.  I spoke to the doctor and she told me that the MRI scan of the right breast had shown up 2 very tiny lumps which they were going to biopsy.  On the ultrasound they could only see one of the lumps so they did the biopsy and now I have to wait for the results later this month on to see what happens next. On Friday afternoon I was having my regular clinic appointment with my Oncologist to get my latest melanoma scan results and this was making me feel very nervous. I had a quick walk up and down the Kings Road to calm myself down before returning to the hospital. You are not allowed to have partners with you at the hospital just now due to COVID restrictions so there was no rockstar husband by my side. I just had to put the big girls pants on and get on with it and this is sometimes easier said than done. I took big inspiration from the amazing Bowelbabe who has recently been documenting her latest surgery on social media and thought if she can be getting through this on her own without any fuss then I can get on with getting my scan results.

It was good to see my Oncologist and nurse in person (well masked up)  as consultations have all been over the phone due to COVID. But since I was already in the hospital then it made sense for me to get my scan results in person rather than rushing home to wait for a phone call.  I was delighted to hear that the melanoma CT and MRI scans were good and 3 years on from started my targeted drugs Debrafenib and Trametinib my melanoma is under control and I was told as far as the melanoma is concerned we are in the best place possible. I felt a huge relief that at least it was good news. The other positive is that as both of my Doctors are at the Marsden then they will talk to each other if I do need further treatment following the results of the breast biopsy. I left the hospital feeling in a better mood although I do have to admit my delight was slightly tainted by the fact I have to wait for the results of the biopsy and what happens next.

At this point I have to say a big thank you to the teams at the Royal Marsden. I know that in the time of COVID it has been hugely challenging for staff and patients.  I know I am very fortunate to be treated by such wonderful teams and there is a village of them from the security guards on the door to the receptionists, cleaners, radiologists, pharmacists, nurses and doctors everything has been handled efficiently and quickly so whatever is next I know I am in the best hands and that is hugely reassuring.  

Since the last blog when we were just a week away from the Giants Causeway Challenge like all other events it was postponed to next year. It was disappointing as we had been training hard and were looking forward to it. But next year we will be back onto the challenge cause and raising more funds for the team at the Royal Marsden. If you are interested to join us we have a number of challenges planned for 2021 including a team at the Royal Parks Half Marathon, the Giants Causeway Big Hike in July and the Blenheim Triathlon in September.  If you would like to join us or plan your own challenge please let me know and thank you as always for all of your support.

Last month, the Duke of Cambridge laid the foundation stone to mark the building works of the new Royal Marsden Oak Cancer Centre, which will be a state of the art cancer research facility, based at the hospital in Sutton. The new facility will bring together over 400 researchers under the same roof as patients and clinicians in spaces designed to encourage collaboration and to put patients at the heart of research. The building is due to open in 2022 and you can find out more here. https://www.royalmarsden.org/blog/hrh-duke-cambridge-lays-foundation-stone-state-art-cancer-research-facility

In addition, I made my first billboard appearance on one of the hoardings going around the building.  I haven’t seen it yet but ones of the girls at the charity kindly sent me a picture. As the saying goes it’s never too late to make it onto a billboard.

In the meantime, I have been out and about staying active and doing some hikes during lockdown to keep myself sane and stay fit and well preparing for the next adventure. Enjoy the run up to Xmas and I’ll be back soon with more Shomelanoma updates.

Cancer · Fundraising · Living with Cancer · Melanoma

Scanxiety in Service Stations and the next Shomelanoma Challenge

On a high in the Peaks

Since escaping lockdown and the lifting of the shielding restrictions, I’ve loved the freedom of catching up with friends and family over the summer. It has passed all too quickly and after a lovely weekend in the Peak District last month to celebrate my mother in laws 75th birthday it was back to awaiting for the latest scan results. I had a new experience going to the Marsden for my latest scans as they took place in the car park.  I understand from the radiographer that the MRI scanner in the car park will be moving into the main hospital building later in the year but actually having it there was good given all the current COVID restrictions. The experience was efficient as ever but part way through the scan I began to need the loo and lying still became an issue for me.  The radiographer stopped the scan and told me I needed to stop wriggling as they had to repeat a section of the scan. I had to hang on a bit longer and then bolted straight to the nearest loo, memo to self always go to the loo in future before scans.

After a gorgeous weekend in the Peaks where I didn’t have much time to think about scan results, it was back in the car on Monday morning for the return to London.  The consultations with my doctor are currently taking place by phone so David suggested we stop for coffee around the time of my appointment. As my appointment time passed and I was anxiously looking at my watch, David said  “you didn’t expect to be called on time did you?”  And yes the clinic was running late so we stopped at a service station and I was feeling anxious.  It wasn’t helped by the fact there was nowhere to have a private call and there were lots of screaming kids in a playground and I kept needing the loo.  However, after the stress came the relief when the phone rang and I was told that my latest scans were all good. My wonder targeted drugs Debrafenib and Trametinib that I have been taking for 2 yrs 9 months are still working and I am feeling well which is amazing.  I left the service station feeling much happier than when I arrived but receiving scan results in service stations definitely won’t become the new normal.

Team Shomelanoma training around Henley

With the sense of relief that my scans are good comes the worry of the resurgence of COVID cases in the UK.  The thought of returning to shielding is just not something I can bear to think about and of more concern is the continued priority focus on COVID at the expense of other serious health conditions including cancer which are becoming part of the collateral damage of this pandemic.  Charities such as CRUK, Macmillan and Maggies are all making huge cuts to their funding which will impact cancer research, support services and end of life care. The reason I am still here alive and kicking is very much due to cancer research. Only 10 years ago the average prognosis for a stage 4 melanoma patient was just 9 months.  If it wasn’t for cancer research and clinical trials I would not still be here today.

The Royal Marsden cancer charity has also been severely affected by the pandemic and fundraising has dropped by 70%. As you are aware, we have been fundraising to support melanoma research at the Royal Marsden and now more than ever with so many fundraising events cancelled due to COVID it is a critical time to support the charity.  In just under 2 weeks Team Shomelanoma will be taking to the epic coastline of the Giants Causeway in Northern Ireland. In this tough one day challenge we will be trekking a marathon distance along  the  undulating terrain of the Giants Causeway ascending over 1000m along this dramatic coastline. The team have been training and we are so excited to get back out there and continue raising funds to support vital melanoma research to continue developing new treatments to save more lives. https://www.justgiving.com/fundraising/shiona-ramagegiantscauseway

Over the last 5 years impressive progress has been made for the treatment of advanced melanoma with the introduction of immunotherapy and targeted treatment and for many patients who respond to these treatments the outlook is much brighter. However much still needs to be done as many patients (50%) don’t respond to immunotherapy and resistance is often developed to targeted therapy.  In the UK alone we still lose 2500 people every year to melanoma.

Despite the COVID 19 pandemic involving a partial closure of trials at The Royal Marsden the hospital is now in progress of getting trials back up and running as quickly as possible. One of the major programmes the melanoma research team is working on is trying to understand which patients with advanced disease will respond to immunotherapy treatment.  Immunotherapy drugs boost the body’s own immune system to attack cancer cells.

Dr Samra Turajilic – the Melanoma Unit’s Consultant Medical Oncolologist. – has found that a particular type of mutation in melanoma patients, called Frame Shift Mutation responds strongly to these kind of immunotherapy drugs. By analysing many different melanoma datasets over the last year, the Unit now have more information about Frame Shift Mutations.  From this information, the team is now developing a more precise way to stratify patients according to how likely they are to benefit from this kind of immunotherapy.

This research has also presented new approaches to information on locating and targeting cancerous cells.  Being able to identify Frame Shift Mutations may also allow researchers to look for and find cancerous cells in the body which are otherwise difficult to locate. This has great implications for the development of new therapy approaches.

Using techniques such as this to study the samples has enabled the team to make novel observations regarding the way that melanoma spreads to other sites in the body. This has shone a light on how these cancerous cells escape the immune system helping to understand why tumour response to immune therapies in melanoma cancer patients is so diverse.

These preliminary findings have already been presented at numerous scientific meetings and ongoing work in this area will significantly advance the Melanoma Unit’s understanding of how cancer evolves and remains undetected in the immune system.

A big thank you to the melanoma research team for providing this update on the melanoma immunotherapy project. Its thanks to your support and generosity that the Melanoma Unit at the Royal Marsden can continue to be at the forefront of melanoma research improving the lives of patients world wide and I feel very fortunate to be treated at such a wonderful hospital.

Team Shomelanoma has been out training for the next challenge in various locations around the UK and here are a few pics. The conclusion this week after a few steep climbs on the SW Coastal Path was that the legs may not have had enough hill training in preparation for the Giants Causeway. With just under 2 weeks to go we are praying that the lashing storms of the Welsh mountains stay away from the Irish Coast but at the end of October in Northern Ireland we will be preparing for all eventualities. A full update on the Giants Causeway Challenge will be provided in the next blog.

Team Shomelanoma training on Devon’s SW Coastal Path

In the meantime thank you as always for all of your generous support it means the world.  This has been a very difficult year for everyone and I hope that you are all staying safe and I’ll be back with more Shomelanoma Adventures soon. 

Stunning views on Devon’s SW Coastal Path
Cancer · Living with Cancer · Melanoma

Escaping Lockdown with Stage 4 Melanoma and Milestone Birthdays

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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.