Mountains to Climb, Milestones and Melanoma

I woke up at 3 am one night last week and the first thought that came to my mind was Mountains, Milestones and then I remembered the dreaded Melanoma. I did think right with the upcoming Welsh 3000’s mountain challenge what a perfect title for the next blog, so I wrote it down and went back to sleep. As my 3 year cancerversary passed on June 15, I have been reflecting on how life has changed over the last 3 years but also feeling very fortunate still to be here.

IMG_2749

I have been on a 6-week break from the hospital, which has been totally blissful, of course I love the medical team at Marsden HQ but not having to visit the hospital has been good for the mind and soul. I also count myself very fortunate to have been well enough to travel to some amazing places over the last few weeks. I find that getting away from London even for a short period clears the mind and helps me to forget about melanoma for a while which is only a good thing. In the last month I have been lucky to go back to New York, spend a few days in Fife with the parentals, climb hills in the Brecon Beacons and am just back from a week in my happy place Cornwall (more of that later).

Summer has fully arrived in the UK and its very much a case of sun’s out guns out (well those of you watching Love Island know that anyway). I have recently returned to the local gym to up my fitness levels for the upcoming mountain challenge. A couple of weeks ago, I overheard a discussion amongst the girls about wanting a tan now its summer and one of them mentioned going on a sunbed. Another girl then tried to dissuade her saying its much safer to have a fake tan and relayed a story about a friend who had died of melanoma. I honestly can’t believe how many young people still use sunbeds in the UK and are not fully aware of the killer machines that they are. Melanoma UK has been trying to get these banned as they are in Brazil and Australia

https://petition.parliament.uk/petitions/237086

Whilst in Cornwall beach season was kicking off, temperatures rising and the Brits were at the beach crisping themselves to a shade of beetroot. This did make me realize just how much awareness still need to be done to educate people in protecting their skin. You don’t have to burn to get a melanoma and there’s nothing healthy about a tan. I recommend you fake it and if you are looking for a good fake tan I can recommend Vita Liberata Body Blur that is idiot proof to apply covers up scars and gives a light colour https://www.boots.com/vita-liberata-body-blur-instant-skin-finish-100ml-10208481 . But most importantly stay safe in the sun wear factor 50, cover up and stay out of the sun between 11 and 3.

The next big challenge coming up in 2 weeks is the Welsh 3000’s . As many of you already know, I love being in the mountains and after having back surgery 5 years ago, my surgeon told me no more long distance running, I replaced it with hiking up mountains. Since my melanoma diagnosis, I have loved being in the mountains even more. I find it focuses the mind, I forget about melanoma and it helps keep me fit. It also provides me with a goal and as someone who is generally positive and motivated I love to have a challenge.

IMG_2902

Every year for the past 5 years we have done a mountain challenge and this year is no exception. From the Three Peaks to Kilimanjaro this year it is the Welsh 3000’s. This is a HUGE challenge especially for me currently on treatment and involves climbing the 15 Welsh peaks over 3000 feet in one weekend involving steep ascents and descents of over 4000 m in one weekend. The challenge is rated as extreme and I am starting to feel nervous at the prospect of what’s in store. Dave and I are doing the challenge with the fantastic Tony, Sam, Phil and Colin who have undertaken many of the previous challenges and we will be raising funds for melanoma research at the Royal Marsden where I continue to be treated for stage 4 melanoma.

Full details of the challenge are here and if you would like to support the team it would be hugely appreciated and there will be a full update on the next blog.

https://www.justgiving.com/fundraising/shomelanoma-welsh3000s

Earlier this week David and I attended a patient evening at the Royal Marsden, which was discussing “Pioneering Treatment: What does the future hold for Melanoma and Urological Cancers? “ which was a very informative evening and covered topics from the current landscape for melanoma and kidney cancer treatment to advances in the precision of radiotherapy to the impact on patient quality of life of new melanoma treatments and the evolution of cancer where Dr Samra Turajilic describes how cancer evolves to resist treatment and how we need to understand how different cancer cells in a tumour change and how to adapt to improve patient outcomes. This is a hugely complex subject and the fact that everyone’s cancer is different makes it even more challenging. It was a very enjoyable evening and was lovely to see some of the other patients who are treated at the Marsden. I even had a couple of them come up and introduce themselves as they recognized me from reading this blog, which was lovely. There was also a patient in attendance from the original clinical trial, for the drugs I am currently taking, whose melanoma has been successfully controlled for the last five years.

A couple of weeks ago, there was a very informative programme on BBC4, following George McGavin “A Year to save my Life” and followed the entomologist and TV presenter through his treatment for malignant melanoma on his heel. Given his scientific background, he was intrigued at understanding more about melanoma and how it evolves. The programme also highlighted a very real benefit and development that was not available to patients like myself just 2½ years ago. George’s melanoma had spread to his lymph nodes in his groin (classified as Stage 3) and rather than have surgery to remove his lymph nodes, he was able to have adjuvant treatment and took dab/tram (my current medication) to treat his melanoma. In George’s case, this successfully treated the melanoma and prevented intrusive surgery. Previously the only option for patients at Stage 3 was surgery and thereafter to “watch and wait”. For patients, this is a huge step forward in that they now feel that the disease is being proactively treated. If you would like to watch, here is the link :

https://www.bbc.co.uk/iplayer/episode/m000696j/a-year-to-save-my-life-george-mcgavin-and-melanoma

IMG_2869

The latest superstar Shomelanoma fundraising efforts for melanoma research at the Royal Marsden Cancer Charity come from from Alfie Ranstead, and Jacqueline Varty. Alfie Ranstead (14) cycled 50 km along the Ridgeway in Wiltshire. He had never cycled that far before and successfully completed his challenge cycling with his 2 brothers Tom and Will in 3.5 hours. Also in cycling mode young Will Baldock (6) recently completed a hilly 10 km cycle in St Albans. He had plenty of snacks, his Dad cycling with him and a big cake awaiting him at the finish to keep him motivated. Finally my school friend Jacqueline Varty completed the Edinburgh half marathon last weekend and also did a PB. Massive congratulations and thank you to all of you.

 

The latest fundraising efforts have sent the total Shomelanoma fundraising efforts to close to £42k in 2 years and are helping fund further melanoma research to help keep cancer patients like me alive . We have now set the target at £50k and are hoping to reach that milestone by the end of the year.

Finally here are a few photos from the recent travels. I really loved returning to New York a city I used to visit frequently with work but since the melanoma rollercoaster I hadn’t been back. It was lovely to be there as a tourist and stay in lower Manhattan to explore the city that is up there as one of my favourite cities in the world. We were also very fortunate to have fabulous weather for our week in Cornwall, this really is my happy place as my Grandfathers family comes from Sennen Cove/St Just I have this feeling of being at home when I go there. I love the area around the Lizard and it’s really hard to believe you are in the UK. We had a wonderful week there and I was sad to return to London but my 6 weeks of no visits to the Marsden had come to an end and it was time to return to Chelsea to see Professor Larkin and the team.

Stay tuned for the next installment and full details of the latest mountain challenge when the Shomelanoma team tackles the Welsh 3000’s.

 

 

 

 

May is Melanoma Awareness Month – It’s NOT just Skin Cancer

IMG_2442

It’s May – Melanoma Awareness Month – the sun is shining and the warm long days have returned to the UK. As I began writing my blog to raise awareness of melanoma, this month I’ll revisit the signs and symptoms of melanoma so that hopefully you don’t find yourself in my situation in years to come. First of all on a positive note, I was back at Marsden HQ on Monday and had good news that my latest scans are good and the Dab/Tram continues to work 18 months on. I was over the moon and Mr. H and I headed off to the Ivy Café Chelsea which is currently in bloom for the Chelsea Flower Show for a slap up breakfast to celebrate.

IMG_1202

On June 16, I will have my 3 year cancerversary. I was originally diagnosed with melanoma after a dodgy mole was removed from my back. It was displaying all of the signs of melanoma as it had grown, become darker and just before it was removed had started to bleed. It was thick – 4.5mm, ulcerated and after a WLE (wide local excision) had spread to my lymph nodes by Jan 2017. I had a full axillary dissection to remove about 20 of my lymph nodes in February but by the end of March 2017 a scan showed the melanoma turned up with a small tumour in my brain. I started immunotherapy (IPI/Nivo) before experiencing grade 4 adverse side effects causing autoimmune hepatitis and it took 3 weeks at Marsden HQ being treated with steroids and mycophenolate followed by 6 months being weaned off the medication to get it under control. Fortunately, I responded to the immunotherapy but after 6 months in Dec 2017 I had a recurrence in the brain when a new small tumour was detected. Since then I have been on my current targeted drug treatment of Debrafenib and Trametinib which has reduced the size of my tumour and kept the rest of my body clear.

Cancer has invaded and changed my life forever and whilst I have taken the positives – it has focused me on living life in the present appreciating the family and friends that I love very much and treasuring my time with them, there is no denying that its still a fairly shit diagnosis and I sometimes wake up in the morning thinking I am living a bad nightmare. Saying that I feel fortunate that treatments for advanced melanoma have improved so much in the last 5 years or the likelihood is that I wouldn’t still be here and I am treated by one of the best Melanoma Oncologists and his team at the wonderful Royal Marsden Hospital.

However the reality is that Melanoma is the 5th most common cancer in the UK and 16,000 new cases are diagnosed each year, though 86% of cases are preventable. In the UK the risk of melanoma increases with age however the number of young people is disproportionately high as it is one of the most common cancers in the 15-34 age group. For more information I recommend Melanoma UK https://www.melanomauk.org.uk/

I was a child of the 70’s/80’s when getting tanned was all the rage and I spent many summer holidays in the South of France baking myself in the sun wearing factor 3 sun cream. I then spent a year of university studying at Aix en Provence before a couple of summers strolling up and down the beaches of the South of France selling ice creams. After university I headed out to Beijing and Hong Kong for 7 years working and travelling round the region. I know that I could have taken better care of my fair Scottish skin. I never used sun beds and in more recent years, before being diagnosed with melanoma, I was much more sun aware and always protected my skin. I can only say that I wish I knew 20 years ago what I know now about protecting your skin.

AA542081-D7D6-4C92-A376-79B3A6725B89

On the recent Easter holiday David and I travelled down to Devon and we were blessed with lovely warm sunny weather. This was the first warm weekend of the year and in typical fashion the Brits had their clothes off and were basking in the sun, some of them looked very burnt. I often wonder what is it about the Brits that means the first sign of the sun means they strip off their clothes. In the recent February heatwave, I was walking up the street in SW London only to see a few men with their tops off walking down the street (lets say they were not David Beckham lookalikes ). In Paris or Rome you would never see men strolling down the high street with their tops off in February or even in July for that matter. There is still so much more to be done to raise awareness of safety in the sun and changing attitudes towards the “a tan is healthy myth”. If you want a safe tan then fake it.

In addition, please watch out for any changes to moles or blemishes on your skin and follow the ABCDE rules going to see your GP if you have any concerns. Always better to be safe than sorry. https://www.melanomauk.org.uk/signs-and-symptoms

I also recommend Heliocare sunscreen factor 50 for your face. It is like a gel is slightly tinted and there is no stinging of the eyes. I wear this every day rain or shine winter or summer and I love it. https://www.heliocare.net/eng/heliocare-products.html

This month, I have been feeling well and it has been lovely seeing and catching up with lots of friends and family. First there was a trip to Chamonix for Johnny’s birthday and a bit of late spring skiing, Easter in Devon catching up with the Smiths and doing some walking training. Then my gorgeous sister in law turned 40 and we had a lovely weekend celebrating with her before heading to Scotland last weekend to see family there, do some hiking and Dave played in the Brian Oates memorial golf day raising money for Crohns disease. I have loved and treasured every minute.

 

 

The Shomelanoma Fundraising has also kicked up a gear this month. First of all to the gorgeous superstar Will Baldock aged just 6 took part in a 10 mile hilly bike ride in St Albans to raise funds for melanoma research. He did a fabulous job helped on by his parents Jo and Steve Baldock and a few snacks to help him climb those hills. Well done Will and a massive thank you for your amazing support.

https://www.justgiving.com/fundraising/joanne-baldock5

Next up young Alfie Ranstead is doing a 50 km bike ride along the Ridgeway in Wiltshire on May 27 accompanied by his brothers Tom and Will. Alfie is 14 and has never cycled this far before in his life so it will be quite a challenge but he said “If Shiona can stay so positive with stage 4 melanoma and raise all this money for others [melanoma research] I can manage my bike ride.” We are wishing Alfie massive good luck for this weekend and a HUGE thank you for all of your support.

https://www.justgiving.com/fundraising/alfie-ranstead

IMG_6453

Also this weekend my gorgeous school friend Jacqueline Varty is undertaking the Edinburgh half marathon to raise further funds. Wishing her massive good luck and looking forward to seeing all the photos. Huge thank you and read more about her efforts here.

https://www.justgiving.com/fundraising/jacqueline-varty1

The Shomelanoma team is currently training for the next big challenge The Welsh 3000s which is coming up at the end of July. It looks TOUGH 15 mountains over 3000 feet in just over 48 hours with some scrambling…….. More to come on this one next month.

We also have a big team signed up for the Royal Parks half marathon in October. This is the one Dave is attempting to run in under 2 hours. His park run training is commencing soon plus mentor guidance from his cousin Matt who will also be running. If you would like to join us please let me know we’ll be having a party after this one!

We have now exceeded the £40k mark with all the fundraising which is amazing news and we hope to push this up to £50k over the coming months. A BIG thank you to everyone for all of your continued support it is making a massive difference and the Shomelanoma fundraising for the Royal Marsden has helped keep me focused over the last 2 years plus of course give back to the wonderful hospital that is currently keeping me and other cancer patients alive. On that note back with more next month and stay sun safe peeps factor 50 at all times.

 

 

 

Stage 4 Melanoma 2 Years On – All Stable

Two years ago on March 31 2017, I received the news from my Oncologist that my melanoma had spread to my brain. Two years on, I am hugely thankful to still be here and very much living life to the full. My latest scans show that my melanoma is stable (good news for any stage 4 cancer patient) and my current targeted treatment Debrafenib/Trametinib which I take in tablet format twice daily 12 hours apart continues to work 16 months on. I am hugely grateful to all of the amazing melanoma team at the Royal Marsden Hospital led by my Oncologist Professor James Larkin who continue to look after me so well.

IMG_2343

For the past couple of months I have had the feeling, I am living on borrowed time, which is probably hard to relate to if you don’t have an incurable disease but fellow stage 4 cancer patients will resonate with this feeling. In the run up to the January scans, I became a bit obsessed with the fact the current treatment I am receiving works on average for 10 to 12 months and I have now exceeded that which is good news. My Oncologist reminds me that for some patients it can work for years and often patients have treatments in a different sequence. For the latest scans I felt much calmer until the morning of the results when I always feel nervous and it was a huge relief to hear everything was stable. For now I am continuing the kick ass enjoy every day mantra and getting on with my life as I know how quickly the situation could change.

IMG_2265

 

It’s been an exciting month and one of the highlights was when David and I were invited to visit the Francis Crick Institute (https://www.crick.ac.uk/) to have a tour and see where some of the research that the fundraising we have been doing is taking place. The Crick is a biomedical research institute who works to understand why disease develops and to find new ways to prevent, diagnose and treat a range of illnesses including cancer, heart disease, stroke, infection and neurogenerative disease. There are over 1200 scientists working there and the building is amazing.

Dr Lewis Au, Clinical Fellow for the Royal Marsden who is part of Professor Larkin’s team gave us a tour of the Crick and what an impressive building it is. As it is open plan the premise is very much on the collaboration between all of the scientists working there. The current research is looking to understand immune related toxicities by multifaceted profiling. We were taken to the wet lab where the scientists are examining specific tissue samples of tumours. We met one of the scientists on the team Alan (also Scottish) who showed us samples taken of a large tumour found in the kidney. He mentioned that previously they would take one biopsy from the tumour but in this example, the tumour was sliced into four sections with up to 20 samples taken from each section, e.g. 80 Nr samples in total. They are then doing specific genomic and immune profiling of the patient and the tumour which takes place in the dry lab where the analysis takes place. The goal of the research is to better understand how tumours develop as they metastasize (spread) around the body. In the context of immunotherapy, they hope to develop a panel of biomarkers to identify patients at risk of immunotherapy toxicity and develop supplementary/complimentary treatments for prevention and treatment of toxicity. As a patient who has experienced severe toxicity to my liver when I had immunotherapy this research is particularly personal to me. The whole experience was really quite fascinating and made me question if I had gone into the correct career. We loved it and it was the highlight of my month and a big thank you to Dr Lewis Au for hosting us his scientist colleague Alan who was explaining everything to us and it was lovely to see Dr Samra Turajlic too.

My 2 year anniversary with no booze is on April 10. I can hardly believe it and am often asked if I miss it. The honest answer is no with the exception of the occasional summer night out when it’s warm and a glass of rose is tempting. I know I was probably drinking too much before my stage 4 melanoma diagnosis and from a health perspective I definitely feel better. I am now the one at the party watching everyone else when they have had one too many knowing all too well I have been there many a time. I can still party with the best of them and I now remember the repeated nonsense that everyone else talks at 1am but for now I am happy with my clear alcohol free head and trying out the latest alcohol free cocktails on a night out.

IMG_2277

As well as monthly appointments with the Oncology team I also have check ups with the Dermatologist every 6 months. Last week my check up proved quite interesting. As I have mentioned before, I have developed 2 vitiligo patches on my face and this is a known side effect of my melanoma treatment. The Dermatologist has also noticed that some of the moles on my body have disappeared and some have become de-pigmented and lighter. The immunotherapy or the targeted treatment could have caused this and it shows the immune system response against antigens shared by the normal melanocytes and melanoma cells. I was also sent for follow up photographs so that this can be compared against the photos from 2 years ago when I started treatment and also moving forward.

IMG_2301

The Shomelanoma team has started training for the next big challenge The Welsh 3000s which is coming up at the end of July. It looks TOUGH 15 mountains over 3000 feet in just over 48 hours with some scrambling…….. After the first training walk last week of 20km and the sore legs the next day there is a long way to go. More to come ………

We also have a big team signed up for the Royal Parks half marathon in October. This is the one Dave is attempting to run in under 2 hours. His park run training is commencing soon plus mentor guidance from his cousin Matt who will also be running. If you would like to join us please let me know we’ll be having a party after this one!

https://www.justgiving.com/teams/shomelanoma

As always thanks again for all your wonderful support, as we move into the warmer weather please take care to protect your skin slap on the factor 50 even when its cloudy and check your skin for any changes in moles and go to see the GP. Better to be safe than sorry. Melanoma is a nasty disease and even although there have been huge advances in treatment there are still 7 people losing their lives every day in the UK alone. May is melanoma awareness month so more to come next month.

 

 

 

 

 

 

 

 

 

Back to Earth with a Bump – Staying Alive

The new year brought with it a flurry of new year resolutions, dry January, Veganuary and reigning it in after the excesses of Xmas but I threw all that out of the window and as the BeeGees used to sing, for me its all about “Staying Alive”. After the amazing holiday to Argentina and Chile and a lovely family Xmas January arrived with a large dose of landing back to reality with a bump and it wasn’t long into the new year that anxiety was back knocking at the door.

IMG_2163

We had escaped up north for a few days early in the month to Manchester to see David’s Mum and had a relaxing few days there. I was becoming conscious of abdominal pains rearing their ugly head and tried to put them to the back of my head. As every cancer patient knows with any strange pain you immediately assume is related to the cancer and thoughts of it invading everywhere occupies your mind. As I had scans coming up the following week I didn’t inform Marsden HQ and I was also conscious that I’ve been wrong about abdominal pains before. It was also worrying me that the targeted treatment that I am currently taking is effective for 10 to 12 months on average and I am now 14 months into the treatment. My Oncologist has reminded me that it is an average and for some patients it works for much longer, some patients are now up to 5 years.

Back in London and in anxiety mode in the run up to the scans, we had an escape day to West Wittering, one of my favourite places and the fresh air, views of the sea and a good walk along the beach helped ease the worry in my head. By the next day when it was time to be stuck in the MRI scanner for my brain scan I felt slightly calmer. The brain scan is particularly unpleasant as you have a mask over your head and you are confined in a long donut tube for 25 mins whilst the scanner sounds like roadworks on the M1. The radiography staff at the Marsden are excellent in making you as comfortable as possible and you do have a panic button should anything happen or if you need to get out at any point. I have never had to use this but if you are in any way claustrophobic the MRI brain scan is a scary, unpleasant but necessary experience. The CT scan on the other hand is quick, not claustrophobic and with the exception of the radioactive dye which is injected to help identify any cancer cells (and makes you feel as if you are about to wet yourself!).

IMG_0960

I tried to forget about the scans over the weekend and the looming results on Monday but there is no doubt I felt extremely anxious and it is huge thanks to Dave for keeping me as calm as possible which was not easy. Even the pilates and yoga wasn’t doing much good this time. Monday morning arrived soon enough with the churning stomach so it was actually a surprise to hear Professor Larkin telling me that my scans were all good. I felt as if I was having an outerbody experience that had shot me out of one of those cannons and I had just landed back to earth with a huge bump. When I explained to him I was so convinced that the melanoma was invading all areas of my body he said to me “well our Radiographers don’t agree with you Shiona“ and you are doing really well.   I was also told that if the abdominal pains continued by the end of the week to let them know and they would refer me to a specialist. By the end of that week the abdominal pains had gone and I was feeling well again.

So it was time to start planning the 2019 challenges and adventures and just over a week after receiving the good scan results I felt very lucky to be flying off to France for a last minute, long weekend skiing with Dave, my good friend Jen her sister Jill and Dad Norrie (Noz) who have all been such a massive support to us since I was diagnosed with melanoma.

For the last couple of years having booked ski trips we have had to cancel them at short notice due to lymph node surgery 2 years ago and last year having just started the latest drug regime and experiencing fevers, we cancelled again. We booked flights and headed off to Les Carroz in France which is an hour from Geneva and had an amazing fun long weekend skiing, eating lots of lovely food, having a laugh. I managed to stay upright for all of the time except at one point when Dave who is usually at the back of the group as he is a good skier ready to pick anyone up who falls over was at the front and I fell over. Jen and Jill were trying to help me up and two lovely Frenchmen one of whom just stopped and pulled me up eventually aided us. Fortunately that was the extent of any skiing drama plus I forgot about melanoma as I was too busy concentrating on staying upright. Look out for us on Ski Sunday !

This week on World Cancer Day on Feb 4, I was invited by the Royal Marsden Cancer Charity to share my patient story at the law firm Macfarlanes who are doing wonderful work by partnering with the charity and raising funds for Professor Larkin and Dr Samra Turajlic’s cancer immunotherapy research project. Members of the charity and Dr Lewis Au, who is a Clinical Research Fellow and lead researcher on the project, joined me. It was a hugely enjoyable experience and around 70 of the staff came along to listen to the talks and were very engaged asking lots of questions about immunotherapy and how it is changing the way cancer treatment is approached. By sharing my experience I was able to bring the project to life from the patient experience.

We have also been invited to visit Dr Lewis Au at the Crick Institute, which is where the immunotherapy research is taking place, and have a tour that I am hugely excited about and will report in the next blog, which will also include a more detailed update on the Immunotherapy research.

We are now planning the next set of challenges for the Shomelanoma fundraising and it looks likely that a team of us will be undertaking The Welsh 3000’s during the summer. This is taking place weekend of July 19- 21 and involves scaling the 15 peaks over 3000 feet in one weekend. It looks a tough one so will provide plenty of focus for us all getting fit. You know we love a few mountains to climb. If you would like to join us please let me know we are just confirming all of the details.

Dave is also recruiting the Shomelanoma team to take part in the Royal Parks Half Marathon, which is on Oct 13, 2019. There are already several runners signed up to join as he attempts the under 2 hour challenge. If you are interested to join the team please let us know.

There will be more social events to come too so watch this space in the coming months and if you would like to undertake your own fundraising event from a bake sale to a curry eve just get in touch and we can help support you.

https://www.justgiving.com/teams/shomelanoma

January has been a sad month in the melanoma online support group I am a member of and we have lost more young lives to this deadly disease and others who have suffered further progression with the disease, which only reinforces how much more still needs to be done to find a cure for this nasty disease.

 

 

 

 

Happy New Year – Goodbye 2018 A Year of Adventure

As 2018 comes to a close we will soon be welcoming a new year, I find myself feeling grateful that December has passed without the major dramas of the last 2 years. As my close friend Liz said to me last year I think you should press fast forward when you get to the month of December given that last year I discovered the new tumour in my brain and the year before the malignant lymph gland under my left arm plus pre cancer cells in my right breast. So this year I feel fortunate (and I am touching wood now) I have been able to enjoy a lovely December with family and friends that I have been cherishing to the max but being a stage 4 cancer patient I am only too aware how quickly things can change.

DSC_0094

I have been on a big high having just returned from the adventure of a lifetime to Argentina and Chile, which exceeded all expectations. After previous disappointments cancelling trips, I hadn’t dare get myself too excited about the holiday especially having been ill with a horrid virus just before leaving for Argentina. I honestly didn’t believe I would be going on the trip until I boarded the flight to Buenos Aires. It turned out to be a wonderful experience and I loved and treasured every moment of the holiday. As we were away for a month it gave me time to switch off and not think about melanoma and that mentally gave me a huge boost. I felt freedom that I hadn’t felt for a long time where no one knew me or anything about my health condition. It was a gorgeous action packed trip and there was never a dull moment. In fact it was so good that David said he needed another holiday on return to recover!!

IMG_0549

 

From the tango hot pot of Buenos Aires we travelled north to the incredible Iguazu Falls one of the wonders of the natural world, which blew us away. We then headed south to the beautiful lake district of northern Patagonia and had a week exploring there before heading to Southern Patagonia and the glacial national parks where we were stunned by the beauty of the Andes, which contrast with the cool blue of the glacial lakes. We spent 2 weeks there and over the border in Chile hiking on the most beautiful trails and were blessed with glorious weather. For me it was up there with the stunning Himalayas in Asia and just reinforced how much I love being in the mountains. Here are some of the highlights.

I was hugely relieved that the trip passed without any medical incidents. On the 5 hour overland trip from El Calafate to Torres del Paine we were with a lovely Australian couple and as we drove through the remote landscape that at times feels the end of the earth and arrived at Torres del Paine, Chile, Shirley remarked “you wouldn’t want to be having a medical emergency in this back of beyond location”. Before I left the UK, the doctor at the Marsden had told me we don’t want to be hearing from you until you get back so when I was tempted to send a message saying all was going well David reminded me not to tempt fate as I would press send and something would go wrong. When I returned to Marsden HQ after getting back from the trip all was good and I was ready to start celebrating the Xmas season with family and friends.

While we were away in Argentina the Shomelanoma fundraising for melanoma research at the Royal Marsden continued with full gusto. My gorgeous cousin Iain, his wife Siobhan and daughter Amanda pushed out all the stops and took things to a new level holding a WAXATHON fundraiser. Photos have been edited and the pain for my cousin and his friend Adam was all was all worth it as they raised over £4,000 which was just incredible and I have to say a huge thank you to all who also took part. Amanda’s employer Barclays kindly fund matched so a BIG thank you to them too and everyone who supported and donated.

 

IMG_2099

Meanwhile in Dubai my good friend Jane ran the Dubai half marathon raising more funds and Lyndsey Graham’s company undertook a second fundraising day in Glasgow. The High n Dry golf society of which my brother in law, Iain, was captain this year, have also donated £1k to the fund from their recent Marbella tour and I am delighted to say that once all the funds have been received the Shomelanoma fundraising total will be over £39k which is amazing news just 18 months after we began the fundraising. Next month I’ll provide a full update on the melanoma research projects at RMH that the money is helping to fund plus some of the upcoming fundraisers for 2019. If you would like to host or participate in your own challenge please let me know.

https://www.justgiving.com/teams/shomelanoma

A massive thank you to everyone who has hosted participated and donated in all of the Shomelanoma fundraisers. They have been challenging, fun and most of all I have loved seeing all the smiles and laughter on everyone’s face as I look back through the photos of all the events.

As I look back on 2018 there have been huge highs and lows from the start of the year emergency trip to A ad E in Cornwall through to the fabulous holiday at the end of the year to Argentina which I never thought would happen. I continue to be immensely grateful for the wonderful care I receive from Professor Larkin, Nikki and all of the melanoma team at Marsden HQ plus the kickass drugs that are keeping me alive . I am also remembering all of those with melanoma and other cancers who have not made it to the end of the year and am acutely aware of how much still needs to be done both to prevent the continued rise of melanoma cases and also develop new drugs that will help more patients with advanced disease survive.

I am also aware of how quickly things can change and the ongoing mental challenge of living your life on a scan by scan basis. As I have mentioned before the drugs I am currently on work for an average of 12 months which of course is making me nervous in the lead up to the next scans as I have been on them for a year. I realize this is only natural.

For now wishing all family and friends a wonderful and healthy 2019, your kindness, messages and support mean everything and keep me going when times get tough. Here’s to more adventure and fun times in 2019.

dd07b314-35c0-45d7-a8da-f7ca310cf1ba

 

 

Melanoma, Mind Games and a Big Adventure

After David’s blog last month looking at the Partner’s view of living with cancer it’s back to me this month. I’ve been feeling pretty good lately and found myself feeling more confident that my Xmas Pressie from Dave may become reality – Dream, Dare, Do – An adventure of a lifetime to Argentina where I had always wanted to visit.

IMG_1579

After experiencing a number of fevers (one of the main side effects of the drugs I am on) earlier in the year, I felt unsure I would be comfortable leaving the security of the UK with Marsden HQ on speed dial 20 mins away from our home. After going to the Alps in the summer, Sardinia in September I started to feel more comfortable about overseas trips and the big adventure may become reality. First there was the hurdle of the regular scans to overcome. My oncologist had tentatively said that he was ok for me to travel … subject to my next scans.

I went through my usual routine over the weekend before getting scan results and tried to keep scanxiety at bay. On our way to Chelsea on the Monday, I began to feel sick and my heart was pounding like going to sit an A level exam. The wait before the appointment felt excruciatingly long and I must have visited the loo about 3 times in less than half an hour. I am also conscious of the fact that the drugs that I am on work to control melanoma for an average of 10 to 12 months and I am approaching that timeframe. My Oncologist has told me to try not to worry and remember that it is an average, every patient is different. Finally my name was called and Professor Larkin told me the scans were all good and I could go to Argentina. It was a huge relief and I left the hospital feeling very excited.

However, the excitement didn’t last long as 24 hours later I began to feel sick and felt a fever was coming on. This came as a bit of a shock to the system as I hadn’t experienced one since March and it was so soon after receiving the good news from my scans.  As you know living with stage 4 melanoma is anything but predictable. Just 2 days later my temperature was 39 degrees and I was back at the hospital feeling awful. Blood tests revealed that I had caught a virus, which was probably compounded by my medication and I was told to prepare for a stormy 48 hours and it was time to rest and do nothing. After 3 days of rest as if by magic I started to feel human again. After a return visit to Marsden HQ a few days later to recheck my bloods the inflammatory markers had returned to normal which was a huge relief. The experience was a huge reminder on how quickly things can change.

Over the last couple of months I have also developed some small vitiligo patches on my cheeks. I am more conscious of these than others. I also had my regular check up with my dermatologist, which enabled me to discuss these with her. Interestingly, I have also developed slight vitiligo rings around a couple of moles on my back. It has been explained that these are generally viewed (albeit not conclusive) as a positive in terms of melanoma control and may be a sign that my immunotherapy treatment is still having a positive impact on melanoma control

Dealing with the mental side of melanoma is as much of a challenge as the physical side. There is no one size fits all solution and even although I am pretty strong mentally and have learned to live in the present, you just never know when a bout of anxiety or worry is going to hit you. I have my coping mechanisms and as I have written in the past one of the best solutions I have found of keeping myself calm and switching the mind off the melanoma worry has been yoga and pilates. I have become an avid yoga fan practicing at least twice a week at the gorgeous Samsara studios in SW London. I was also lucky to recently take the yoga a step further and head off on my first yoga holiday to Majorca with my gorgeous friend Jen. This was a different somewhat calmer affair than previous girly trips with good friends Liz and Jen. Up at 7, yoga practice at 8 watching the sun come up over the beach for 2 hours it was quite blissful and very relaxing. I completely forgot about the melanoma and focused on trying to improve my vinyasa flows and poses. It was lovely to spend quality time with Jen catching up on gossip in such a relaxing environment and I came home after 4 days feeling in a relaxed state of zen.

IMG_1603

Now whilst yoga can’t cure my cancer anything that helps improve my mental well-being is good in my book. I know that some of the cancer charities Macmillan, Maggies also provide counseling and many patients find this very helpful, I certainly haven’t ruled this out but I haven’t felt the need in my current state of mind.

During the last month I was fortunate to be asked by the Royal Marsden Cancer Charity to join them for a visit to speak to the staff of one of their major corporate supporters Ralph Lauren. Every year, during the month of October Ralph Lauren run their “Pink Pony “campaign which is their corporate wide initiative in the fight against cancer. The Royal Marsden Cancer Charity is the UK benefactor with Ralph Lauren organizing a number of fundraising activities throughout the year to engage their staff and customers. I spoke on behalf of the charity to thank Ralph Lauren and also share my patient story and my experience of the Marsden and their teams. It was a hugely positive day and I really loved being part of it and it was really lovely to see how engaged and passionate the Ralph Lauren staff are about supporting the wonderful work of the Royal Marsden Charity. I also received a lovely framed letter from the Head of the Royal Marsden Cancer Charity thanking everyone involved in the Shomelanoma fundraising, which was hugely appreciated.

IMG_1605

On our 13th wedding anniversary (14 October) David and his good friend Fraser took part in the latest Shomelanoma fundraising activity Royal Parks Half Marathon. It was pouring with rain as they set off through the beautiful Royal Parks a far cry from the gorgeous sunny day of last year but they both did a fabulous job and arriving over the finish line completely soaked but 10 minutes quicker than last year to run in 2hrs 18. The challenge is now on to run under 2hrs for 2019. Well done to them both and thank you to everyone who has supported them.

https://www.justgiving.com/fundraising/shomelanomarphm2018

Next up north of the border my gorgeous cousin and his wife Iain and Siobhan Ramage are taking things to another level with the sponsored waxathon and fundraising evening. We have just heard that the activities have raised £2000 which is amazing and there will follow a full report in the next blog along with future fundraising plans for 2019.

IMG_1634

As the nights close in and weather turns wintery please remember to do your monthly skin check and if you see any changes in your moles see your GP. Don’t join the statistics 7 people die of melanoma in the UK every day and once it spreads its very difficult to control. UV rays from sunbeds have been shown to contribute to rising cases of melanoma and we want them banned in the UK as they already are in Brazil and Australia. I have never used sunbeds but please help support Melanoma UK and sign and share the petition below.

https://petition.parliament.uk/petitions/223903

Living with Cancer – A Partner’s Perspective

Shiona thought it would be interesting for me to write a guest blog so that you get to hear about things from my perspective. I am always slightly bemused when Shiona refers to me as her rockstar husband in her blogs – I don’t play any musical instruments and my promising early singing career as Joseph whilst at Junior School was subsequently curtailed by a nodule on my vocal cords … however I did still appreciate the card I received from Liz, Johnny and Clem earlier this year!

IMG_5835

At the outset of this journey, my knowledge of melanoma was limited to basic awareness only. I recall family holidays in the 80’s when my late Dad used to pride himself on applying his factor 4 piz buin cooking oil whilst I myself had to turn to applying natural yoghurt to the top of my sadly burnt feet to try and cool them down to ease the pain. Whilst awareness of the damage that exposure to the sun can cause has improved since then, much still needs to be done, with the incidence of melanoma continuing to increase here in the UK. Melanoma patient numbers being treated at the Marsden have doubled over the past 12 months alone.

As Shiona’s melanoma has progressed, I have learnt that it is an extremely unpredictable disease and once it metastasizes (spreads from its primary site), it can spread almost anywhere – commonly to the lungs, kidneys, liver, bones and/or brain – the reasons why melanoma spreads to different organs / parts of the body is not yet fully understood.

We both consider ourselves very fortunate that Shiona is being treated at the Royal Marsden and only last week, they announced that both their Chelsea and Sutton hospitals have been awarded ‘Outstanding’ by the Care Quality Commission. A fantastic achievement and recognition for everyone involved at the hospitals and from our experience, more than fully deserved.

IMG_1464

Not only do we live in close proximity to the hospitals, which makes our regular visits somewhat easier, we also have good relations with the melanoma team and trust them explicitly. Being a specialist cancer centre and being cared for under Professor Larkin and his team, who are at the forefront of research and clinical trials in melanoma for the treatment of advanced disease, we really couldn’t be in better hands. Having said that we are both acutely aware of how unpredictable the disease can be.

I am fortunate to have discovered that I have the ability for my mind to stay in the present; a stage 4 melanoma diagnosis has too many variables. As a consequence I’m a great believer in there being little benefit in wasting energy on things you cannot control. I am realistic and pragmatic enough to realize that I cannot control Shiona’s melanoma, however, what I can control or should I say influence (!) is my ability to support Shiona along the journey, so that has been my priority throughout.

IMG_1488

When I say influence … I have obviously had no influence over Shiona’s impending yoga weekend in Majorca with her friend Jen!

Notwithstanding the severity of the situation, we have had a few laughs along the way …

I have been sat in hospital waiting areas before whilst a nurse has been walking around asking for “David Ramage” … it normally takes a while for me to twig that the nurse is probably looking for me!

When Shiona updates the team about the next challenge for the Shomelanoma fundraising, I am often asked, somewhat sympathetically, “Are you having to do this too?”

My favourite was probably when Shiona was told she was being discharged from her 3 weeks stay in the Marsden Chelsea last summer to “save your husband from bankruptcy”.

IMG_1503

As many of you know I joined Shiona in abstaining from alcohol when she started her immunotherapy treatment and I completed a full year without an alcoholic drink in April this year. Many people asked whether I felt better for it … the reality was not noticeably! The real benefit for me was that I’m sure it helped keep me mentally on an even keel with so much going on.

Subsequently, the biggest thing I have noticed is the change in my drinking habits … I rarely have a drink at home now but still enjoy a glass or two when out.

My abstinence from drinking was however a source of amusement to our CNS (nurse) at the Marsden who loved to point me out to other patients (& their partners) in the waiting area telling them how I was so well behaved and always did as I was told albeit on at least one occasion, I was instructed to “have a drink David, you only live once!”

IMG_1457

Throughout it all, Shiona has maintained a remarkable, positive attitude. Of course there have been difficult moments but Shiona has shown tremendous resilience to dust herself down and get on with her life. She is not one for negativity. I am genuinely in awe of her.

I am also acutely aware that it is Shiona who has to deal with her diagnosis and try as I might, I can never fully put myself in her position and/or see things through her eyes. For example, if I think about scans … they are obviously a stressful time but whilst Shiona has to go through the whole worry of the scans, radiologists and results and no doubt must feel like time stops still, I don’t torture myself by over-thinking things that I have no control over.

On a couple of occasions this summer, Shiona has felt that things were not right with the odd pain causing her some anxiety. In such circumstances she monitors things for a few days and if still concerned will contact the team at the Marsden for either advice or a check-up. This has led to un-scheduled scans, which fortunately have been good. My approach to such scenarios is to stay calm and be logical. I was going to say rational but that could wrongly imply that Shiona has irrational thoughts … in her situation, no thoughts and/or anxieties could ever be described as irrational. It is only natural that such anxieties lead to thoughts about self-diagnosis and/or future treatment plans, however I refuse to indulge in such conversations preferring to wait and see what the facts are and/or what her Oncologist says. When I notice that Shiona is getting anxious about things, we will often go for a long walk to talk things through and take her mind off things.

We have been proactive in educating ourselves and understanding treatment options however this is tempered by the fact that many of the treatments are new and data is still being compiled and conclusions drawn. You also learn more as time goes by.

For example, when Shiona was recommended to have immunotherapy treatment on discovery of a small brain tumour in April 2017, we were thrust into a world that we knew little about. Statistics are bandied about in relation to treatment options and a scary new language is spoken with phrases such as ‘progression free survival’ and/or ‘overall survival’.

On the recommendation of her oncologist and after a few days to consider the options, Shiona opted for the combination immunotherapy treatment of ipilmumab and nivolumab, which apparently has an overall response rate of 58%, and which was comparatively better than if she had opted for single treatment with either nivolumab (44%) or ipilimumab (19%). These statistics are abstracted from the CheckMate 067 trial.

What I have subsequently learnt and now better understand is that the statistics quoted above were derived from clinical trials, and for which all trials have strict criteria to qualify to join in the first place, so in effect the results (& statistics) are to some extent, sanitized. For example, patients could not qualify for this particular trial if they had received prior treatment for their melanoma and/or in the case of patients like Shiona, melanoma that had spread to the brain were excluded from the trial. The sequence in which a patient receives treatment for their melanoma also affects the effectiveness of subsequent treatments.

IMG_1556

Back to the statistics, which suggested that some 39% of patients on the combination treatment suffered treatment related adverse effects leading to discontinuation of treatment. With the onset of her autoimmune hepatitis, Shiona joined the 39% club! Whilst in hospital we were advised that having such an adverse effect was considered a positive in terms of the overall response rate … increasing the likely response rate to the immunotherapy to c. 70%.

As you can probably tell, you can become inundated with statistics and in the end forget the context in which they apply. Statistics by their very nature are subjective and whilst medically and/or clinically of interest, for a patient &/or their families, I think you are better off not getting too obsessed about them.

At the time, both Shiona and I were being filmed for our story to potentially be included in a Channel 4 Documentary … with Shiona still in hospital, the producer came to interview me at home late one evening and said to me the statistics were looking good to which I answered along the lines of “It depends upon how you view statistics … for example, if I had ten members of my family and/or friends in a room, 70% means that 3 of them would not respond to treatment.” Statistics in the context of a serious illness and/or human life somehow seems inappropriate.

Recent developments in the treatment of melanoma (and many other forms of cancer) have recognized that the one size fits all approach doesn’t work. As Professor Larkin often remarks … “It’s all about the biology and every patient is different” and this is leading to more personalized treatment and care for patients.

I often say that the subject area is fascinating but I’d rather we were not exposed to it. Some 5-10 years ago, a patient with Stage 4 melanoma would have typically survived for between 6-9 months. Due to advances in the understanding and treatment of melanoma, this is not the case for a number of patients and the team at the Marsden are now able to study and monitor Stage 4 patients to gain further understanding of the disease and enhance/tailor individual treatments.

8e58338a-ff12-4fce-8ccd-8c4b99d1020f

Much of the current research surrounds trying to better understand immunotherapy and its effects. Immunotherapy treatment harnesses the body’s natural strength to fight cancer, empowering the immune system to conquer more types of cancer and save more lives.

It is a complex area especially when you consider that all patients will be unique in terms of:

  • pre-existing immune system/characteristics
  • tumour type / genetics
  • organ involvement
  • micro biome

By studying and monitoring patients throughout their treatment, they hope to be able to develop a panel of biomarkers that could identify patients at risk of immunotherapy toxicity before it occurs and be able to prevent it from occurring.

With immunotherapy being successful in the treatment of melanoma, it is now being applied to many other forms of cancer as an alternative to more traditional chemotherapy and radiotherapy treatments. Therefore the funds that we are raising through Shomelanoma will not only benefit further research in melanoma but also enhance the knowledge that can be applied to the treatment of many other forms of cancer.

Sunday 14th October 2018 will be our 13th wedding anniversary; rather than taking Shiona away, I will be undertaking my next challenge in the Shomelanoma fundraising, by running the Royal Parks Half Marathon again. Unlike last year, I will not have the novelty of achieving a personal best for each km I run. Joining me again will be one of my mates, Fraser Brock … we met each other back in July 1995 whilst both working together as graduates at Faithful & Gould in London … and when I asked him earlier this year if he fancied running again he responded in typical fashion “yes, delighted to help you guys” … what a top man!! If you would like to sponsor us, the link is below:

https://www.justgiving.com/fundraising/shomelanomarphm2018

As always, your support is greatly appreciated.