Cancer · Living with Cancer · Melanoma

Escaping Lockdown with Stage 4 Melanoma and Milestone Birthdays

IMG_4680

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

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

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

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

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

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

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

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

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

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

 

 

 

 

 

 

 

 

 

 

 

Cancer · Living with Cancer · Melanoma

Lockdown Life with Stage 4 Cancer

IMG_4496

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

 

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

 

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

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

IMG_4438

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

IMG_4435

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

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

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

https://issuu.com/royalmarsden/docs/rm42_webreadyspreads

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

 

 

 

 

 

 

 

 

 

 

 

 

 

Cancer · Living with Cancer · Melanoma

Three Years of Stage 4 Melanoma and now Corona Virus

I am approaching the 3-year anniversary of my stage 4 melanoma diagnosis on March 31 and just received good news that my latest scans are fine. I was at the hospital on Thursday and it felt strange as it was much quieter than normal and the radiology staffs were all in very serious mode. This is of course not surprising given that we are in unprecedented times where our amazing frontline NHS staff are being asked not just to do their regular day jobs but also take on dealing with the worst virus pandemic in a generaton. On Friday my Oncologist phoned me to let me know my scans were fine, and he was prescribing 2 months worth of drugs so I didn’t have to go into the hospital for my appointment, as they were trying to limit unnecessary footfall through the hospital. I asked him if my immune system was affected with my current drug regime and he said it was likely to be more compromised than the average person my age without melanoma. I am now being sensible practicing social distancing, stopped going to the gym and swimming but I have still been running outside and my bike is serviced, ready for action. It also makes complete sense where possible for the doctors to be doing consultations by phone/skype to save face-to-face contact for them and their patients. It also provided the benefit of having my usual weekend scanxiety worry awaiting the Monday morning appointment.

IMG_4307

However, despite being given the good news of my scan results I found myself becoming increasingly anxious about the corona virus and the fact I am immune compromised. As if there’s not been enough to worry about over the last 3 years with stage 4 cancer now this comes along. I have now recognized what was making the situation worse was social media and listening to the news so I’ll be doing less of that and focusing on finding fun ways of adapting to my situation at home.

I did however pop into the Royal Marsden this week to pick up my 2 months supplies of drugs and have blood tests. The hospital is taking a lot of precautions to keep patients and staff safe. I’ve heard of some patients who are having their treatment cancelled as its too big of a risk for their immune systems right now as they could be at a higher risk of serious complications with the corona virus. This adds additional stress for those already dealing with their cancer diagnosis. The NHS is under such stress right now that resources are also being diverted to other areas.

David and I lived in Hong Kong throughout the SARS epidemic of 2003 when we had home working, social distancing and travel bans to certain locations and there was fear amongst the Hong Kong people. One of David’s abiding memories is of some of the local chinese driving their convertible cars with roofs down but face masks on … We still have friends in Hong Kong and the corona virus hit there in mid January shortly after China. They closed their borders, implemented testing, shut schools and had social distancing very early on and appear to have contained the virus showing a low number of cases and deaths. Many of the other SE Asian countries have been the same. It is currently very distressing to see what is happening in Europe and in my opinion Europe and the UK have slept-walk into the current crisis. I just hope that we are not going to see the UK following Italy in a couple of weeks’ time. It does feel like we are living through a real life disaster movie.

 

To say how quickly life has changed just 3 weeks ago David and I were on the slopes skiing in Chatel with good friends Jen, Paul and family. We had beautiful weather albeit it was warm skiing in the fresh mountain air. Here are a few pics from the mountains. I did suggest to David the other day that we get a camper van and head north to the Outer Hebrides, however, reading the BBC website today, it appears others have done exactly that and are now likely to be creating a strain on their limited local services and everyone needs to stay at home.  It’s almost 2 years since we had our lovely adventure there and I am now longing to get out of London for some Scottish mountain air. If anyone can bottle it and send some to me please do.

As I mentioned in my last blog next up on the melanoma fundraising for the Royal Marsden is the triathlon. My gorgeous friend Melissa Tarver is signed up to do an Iron Man in Barcelona in July and a group of us are signed up for the Blenheim Palace Triathlon on May 31, albeit like many events, we have been advised this week that it will be postponed and will be rescheduled. On the plus side this gives me more time for training which I need especially for swimming.

IMG_4341

It’s hard to believe a little less than 2 weeks ago I was swimming outside on a gorgeous Friday afternoon at Hampton pool. In the meantime I will still be running and cycling and doing Joe Wicks fitness classes in the back garden to keep myself sane and fit. Welcome to the garden gym. David doesn’t think the neighbours are ready for him to join me yet!!

IMG_4358

We may need some virtual fun activities over the next few months to keep us entertained and sane and the idea of a virtual danceathon has arisen. Get your pink wigs and legwarmers out.

As we enter this uncertain time more than ever I appreciate the lengths that the Marsden and all NHS staff right now are going to look after patients. This goes from the cleaners to the porters to the nurses and doctors. As they say not all heroes wear capes but they most definitely are all heroes.

IMG_4353

Finally my patient story is included in the latest Royal Marsden magazine with a commentary from my Oncologist. I’ll include a link with the next blog In the meantime stay safe, sending lots of love to you all and more shomelanoma adventures coming from home soon.

 

 

 

 

 

 

 

Melanoma

Mastering the Melanoma Mind Game – Happy 2020

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

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

IMG_4267

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

IMG_3666

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

http://www.livetotri.co.uk/blenheim

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

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

IMG_4275

 

 

 

 

 

 

 

 

 

Fundraising · Uncategorized

The DECEMBER Factor and a HUGE THANK YOU.

67561B94-944C-4F4E-8104-2E56AAA37E6E

As December arrives with the festive season in full force, I always find myself feeling slightly nervous. This year I was very lucky to spend most of November on an amazing adventure to Peru (more of that later) and while away I found myself thinking less about melanoma. But it was back to reality last week with 2 appointments at Marsden HQ one to see the Dermatologist for my skin check up and the other on Friday to see my Oncologist. At my Friday appointment my Doctor reminded me that I had now been on the targeted drug treatment Debrafenib and Trametinib for 2 years and its good news that it continues to keep my melanoma under control. I did mention that I always feel a bit anxious when December rolls round as I had such horrible news in Dec 2016 and 2017 and I suppose its only natural that these memories rear their ugly head at this time of year. I also became quite obsessed last December with the fact that on average my treatment works for 12 months before the melanoma develops resistance. I have been repeatedly told that this is an average and for some patients it can work for years. I was also interested to know if I was still getting any benefit from the immunotherapy treatment I had or was it just the targeted treatment that was keeping my disease under control. I was told that is the million-dollar question and he didn’t know the answer. There were a number of patients who had both immunotherapy and targeted treatment and their disease was under control and that I should focus on the most important facts, which was that my melanoma is under control and I was feeling well.

Every 6 months I also have a skin check up with the Dermatologist Dr Fearfield and last week she noticed that the moles on my body have faded further and some of them completely disappeared. This is positive and shows the immune system response against the antigens shared by the normal cells in the melnomacytes and the melanoma. This could be caused by the targeted treatment that I am currently on or the immunotherapy treatment I had previously but it is generally seen as a good sign and will continue to be monitored.

Before leaving for Peru, I was at the hospital for my latest scan results, which were good, and also to present Professor Larkin with the big cheque for £50,000 to support the melanoma research projects at the Royal Marsden. This is a result of all of the shomelanoma fundraising efforts and I want to say a HUGE thank you to each and every one of you who have been instrumental in taking part and generously supporting all of the fundraising challenges. When I was hospitalised for 3 weeks in June 2017 for severe side effects from my immunotherapy treatment I had no idea what the future held but decided I wanted to give something back for the outstanding care I have and continue to receive by raising some funds for further melanoma research. There was no plan or target in mind but along the way so many people have contributed by organizing their own events, taking part in wild challenges, dancing for hours at the danceathon, laughed at the comedy night (or waxathon) and given so much to all of these efforts. David and I have enjoyed and had many laughs and a few tears (me not him) doing these challenges and have created many special memories along the way. I feel extremely fortunate to have such fantastic family and friends both near and far and your support has raised this incredible sum of money to support the research of my Oncologist Professor James Larkin and his wonderful melanoma team at the Royal Marsden who are doing a damn fine job keeping me alive. They have also involved me in the decisions of where the funds raised are allocated and are keeping me regularly updated on the immunotherapy research projects and the latest update of was included win my last blog. Whilst hugely impressive progress has been there are still too many patients dying from the disease and there is a long way to go which is why the fundraising to support melanoma research is so important and you will not be surprised to know we are already planning the 2020 challenges and David is already bracing himself.

Here are a few pictures from the latest fundraising efforts, which in mid October saw a big team running the Royal Parks Half Marathon and raising a lot of money. It was a wet muddy day but all of the magnificent eight runners Dave, Matt, Chris, Fraser, Jo, Tony, Christy, Ronan and Thomas did a fine job and raised over £7,000 towards the fundraising. Well done to all, David will be back for round 4 next year the under 2-hour target is there to be broken.

Last weekend the gorgeous Nicki Millward ran the Cayman Islands half marathon in very hot conditions in a speedy 1.57 so huge congratulations to her plus a big thank you to all her family and friends who have generously supported the fundraising efforts. Last Saturday we all got into the Xmas spirit when Liz, Johnny and Clem had an incredible joint birthday/anniversary party for and in lieu of presents had their lovely family and friends donate to the Shomelanoma fundraising. Their incredible generosity helped us reach an overall total over £57K, which is simply incredible.

In early November David and I went to see adventurer Ben Fogle on his tour Tales of the Wilderness at the local Wimbledon Theatre. I have followed Ben’s adventures for the last few years love his TV show “New Lives in the Wild” and his maverick adventurer approach to life. One thing he said in his talk really resonated, as I was about to head off on the latest adventure trip to Peru “Smile, Look up and Dream, Dare, Do”. I thought back to experiencing the horrid side effects when I started the current Dab/Tram treatment, spending New Year 17/18 in A &E fearing I would never again be well enough to leave the UK far less go on adventures to South America and I felt very grateful and fortunate to be well enough to go on the latest adventure and take some of Ben’s maverick adventure attitude with me.

Peru is such a diverse country; we started off in the crazy city of Lima, which made Bangkok look calm. We loved the arty district of Barranca where we stayed in a colonial guesthouse – Second Home of the renowned Peruvian artist Victor Delfin. We then moved onto Arequipa and the stunning sights of the Colca Canyon. From there it was onto staying with a Peruvian family in Lake Titicaca (the highest inland lake in the world at 4000m) on the island of Uros where the lodging was remote and built on an floating island made of reeds with solar power and a compost toilet. It was utterly stunning, had no wifi and felt lovely to be totally away from the craziness of modern life, chilling out on a boat, learning about the Peruvian way of life and watching my favourite blue-beaked duck of lake Titicaca. It was a long way from London. The last night we were reminded of the remote location when a fellow traveller developed a bad eye infection and had to cut short his stay and be taken for medical help. I then read in the Lonely Planet if you do get sick in Lake Titicaca don’t think twice about heading to La Paz which is the Bolivian capital as the medical care in Puno is poor. Fortunately I didn’t have any issues and was happy to move on to Cusco, Machu Picchu and the Sacred Valley where we spent a week exploring, hiking in the mountains and staying at the fabulous Explora Hotel, which exceeded all expectations. Finally we had the last few days in Mancora in the north of Peru chilling out by the beach before the long journey back to reality. It was an incredible trip and I loved every minute. Here are a few pics.

 

With Xmas just over a week away I want to wish you all a happy festive period with all your family and friends and thank you once again for your amazing support. Here’s to a happy and healthy 2020 and to more Shomelanoma adventures … stay tuned.

 

 

 

Uncategorized

Hope, Fundraising Research and Stage 4 Melanoma

Melanoma has been hitting the headlines recently with the release of the 5 year results of the checkmate 67 trial for combination immunotherapy drugs (ipilimumab and nivolumab) which shows the drugs can stop or reverse the progression of advanced melanoma in more than one in two patients. This is truly ground breaking when you consider that less than 10 years ago only one in 20 Stage IV patients survived for 5 years or more and most faced a life expectancy of between 6 to 9 months. My Oncologist led the trial and here he is at the European Oncology Conference (ESMO) discussing the trial results

https://www.youtube.com/watch?v=Xgk54YXpL1E

However, whilst impressive progress, immunotherapy doesn’t work for around 50% of patients and it can have seriously life debilitating side effects; there are still far too many melanoma patients are still succumbing to the disease. There is so much work still to be done and that’s why the fundraising to support the melanoma research at the Royal Marsden is so important (more details on the melanoma research later). The team working on the research is pictured here led by Dr Samra Turajilic, Dr Lewis Au and Dr Lavinia Spain who all work with Professor Larkin.

IMG_3394

I was recently back at Marsden HQ and my latest scan results were good now 21 months on from starting Dab/Tram it continues to keep my melanoma under control for which I am hugely grateful. At my latest consultation I met the new team of registrars who have recently joined the melanoma team. After hearing my results I was asked “So Shiona how are you” and my response was “Well we’ve booked to go to Peru” at which my doctor replied “Most patients when I ask that question would answer with how they are feeling from a medical perspective and any side effects experienced but you have gone straight to the important things” I was then feeling slightly embarrassed but I hadn’t experienced any side effects in the previous month and did have questions about the drugs I am on and the high altitude in Peru. I was also thinking perhaps I had not made the best impression on the 3 keen new junior doctors who I had just met for the first time. Anyway my Oncologist knows me well and David was finding it all rather amusing. I guess it did show I am getting on with my current “living in the present life”.

The living in the present can be hard as anyone going through stage IV cancer treatment will know. I have gone from the utter fear of planning anything early last year due to bad side effects and cancelling trips to now feeling lets just book the trip. I like to have scans close to going away on holiday for peace of mind and also of course the insurance company requires it too. Recently though I had a sharp reminder of how quickly I can go from feeling well to feeling awful. A couple of weeks ago I was attending my lovely brother in law and gorgeous new sister in law’s wedding in Manchester. It was a stunning day with beautiful September weather and so much fun seeing all the family and partying at the wedding. We returned to London the following evening and at 3am on Sunday morning I woke up bolt upright feeling awful knowing I was going to be sick and that was the start of a horrible 36 hours of vomiting and diahorrea that I wondered if it would ever stop. I couldn’t get my head off the pillow all day on the Sunday, as I was feeling so awful. At one point David said to be don’t you think you might feel better if you come downstairs so I dragged myself out of bed and went downstairs only to be running to the bathroom 5 mins later. It definitely wasn’t the alcohol from the wedding, as I don’t drink anymore. Although I was feeling awful, I didn’t have a fever and I knew if I phoned the Macmillan hotline at the Marsden on a Sunday I would probably get sent to A and E so decided to just hang on and see how I was by Monday morning.   The following morning I had stopped being sick and the D and V was under control so no need for an unscheduled trip to Marsden HQ. I think I just caught a vomit bug as Dave’s cousin it materialised had caught the same bug. Anyway it has certainly made me rethink any long bus trips planned in Peru and also remember how quickly I can go from feeling good to very unwell.

 

 

Over the last couple of months since finishing the Welsh 3000’s there has been a lot more time to see family and friends as I treasure spending time with them and I know that it may sound a bit of a cliché but its what’s important in life. There has been a lovely trip to Scotland to see my parents and also some of the Scottish family, Anne and Fred’s Golden Wedding Celebration Party in Derbyshire, a trip to Salcombe with my good friend Jen, the Hadcroft wedding in Manchester and a girls trip to Hertfordshire to celebrate Liz’s bday. Here are a few pics from the recent adventures.

 

The Shomelanoma fundraising has also received a boost over the last couple of months. Anne and Fred (David’s Aunt and Uncle) celebrated their Golden Wedding Anniversary and had a party to celebrate which was a lot of fun. Their guests generously donated to the melanoma research at the Royal Marsden rather than give gifts and an incredible £730 was raised so huge thank you to Anne and Fred plus all of their guests for their generous donations.

Next up the Shomelanoma team will once again be running the Royal Parks Half Marathon. We have a big team this year including David, Matt, Fraser, Chris, Tony, Christy, Ronan, Thomas and Jo who are all training hard and will be taking to the parks of London on Sunday 13 October. If you would like to support them full details are below and BIG thank you to all of you, look out for the photos in the next blog.

https://www.justgiving.com/fundraising/shomelanomarphm2019

Thanks to all of your generous support we are now less than £1k away from the Team Shomelanoma £50k fundraising target which is just incredible and I have to say a massive thank you again to everyone of you that has taken part in a fundraising event or donated to support all of the various challenges. The funding is being allocated to support the melanoma research programme and here is the latest update from Dr Lavinia Spain.

The Melanoma Research Programme is currently working on samples collected from 2 complementary studies, involving >300 patients.  The first, Melanoma TRACERx (TRAcking Cancer Evolution through therapy (Rx)), is a research study aimed at transforming our understanding of cancer heterogeneity (differences in cancer genetics from cell to cell even within the same patient) and evolution (how cancer evolves over time within the same patient). Through longitudinal analysis of genetic information, Melanoma TRACERx ultimately seeks to understand how and why melanomas progress as well as examine the variation in response to treatment.  The second is the PEACE study, a national post-mortem study enabling sampling of tumours at multiple metastatic sites. 

At present we are focused on cohort of 14 cases for analysis, leveraging samples obtained through both studies. Between 10 and 70 samples have been collected from each patient. In a normal study, usually only 2 to 3 samples are collected. This now means the team has around 500 – 700 patient samples to analyse. With this depth of data we hope to answer important questions about immunotherapy and tumour heterogeneity, making a unique contribution to the scientific literature.  Both DNA and RNA samples have been extracted for sequencing, a process that can take up to two months to prepare accurately and to the required standards of quality. Using the latest genetic sequencing technology hundreds of patient samples have been sequenced. This data is now being interpreted by our team’s bioinformaticians based at the Francis Crick Institute. This is a specialist role which applies information technology to analyse the vast amount of biological data. The aim is to identify specific mutations or proteins that influence immune response which can be investigated further. The analysis of the preliminary data is currently on-going. 

The team aim to publish their preliminary data in a leading scientific journal in order to significantly advance our basic understanding of why there may be heterogeneity in tumour response to immune therapies. Over the next 12 – 18 months the team aim to complete their final analysis of the data collected.

In parallel we are continuing with a number of other results projects: 1) collecting blood samples from a large cohort of patients in order to evaluate how tumour DNA circulating in the bloodstream may be used to predict relapse and response to therapy, 2) looking at matched primary melanomas and their metastases to elucidate the nature of evolution and spread and 3) determining how ‘biomarkers’ (distinct measurable characteristics of a tumour) may be used to predict treatment response.  

We are always incredibly grateful for the generosity of our patients and their families who contribute to these studies.

Stay tuned for more Shomelanoma adventures soon.

 

 

 

 

 

 

 

 

 

Uncategorized

Friendships, Welsh Mountains and Melanoma

IMG_1765

The week before the Shomelanoma team set off for the latest mountain challenge I was back at Marsden HQ for the latest scan results. It feels like the time between scans passes so quickly as I try to cram as much as possible when feeling well knowing that everything could change at the next consultation. Fortunately the latest scans were good and the Dab/Tram continues to work 19 months on from when I started the latest treatment so I am feeling very thankful.

Managing anxiety before scans is never easy but I have found that it helps to be away from London the weekend before getting results as I am occupied and thinking about other things. Dave and I were in the Peak District the weekend before the latest scan results as I was celebrating my birthday whilst getting in some last minute training on Kinder Scout for the Welsh 3000’s. After getting my scan results and telling my Oncologist about the latest madcap mountain challenge we had the green light to set to off for the Welsh mountains.

We have a wonderful group of special friends who have accompanied us on these challenges and this year was no exception. Tony and Sam, Phil, Colin and of course the rock star husband Dave all took precious time away to train with us, spending the last few months walking up and down hills across the UK from the Brecon Beacons to Cornwall and the Malvern Hills to Scotland. There have been many amusing moments and lots of banter on the walks that keeps us all entertained and I always looking forward to our precious time spent together

IMG_2951

After last year’s extreme heat on the Jurassic Coast 100km, this year the Welsh mountains had the opposite weather in store for us. An idyllic summers eve in the beautiful coastal town of Conwy in a lovely pub on the north Welsh coast was a false dawn as the next morning the gales and rain had set in as we arrived at the hostel for the safety briefing before setting off to start the Welsh 3000’s. A message from our guide the day before telling us to have enough clothing to get soaked for 3 days was the warning that the weather gods were not going to be on our side.

IMG_1704

What followed was 3 days of extreme weather high gales and driving rain, which made the steep terrain difficult to navigate, and the ground underfoot slippy. Over the whole 3 days there were hardly any breaks in the relentless wind and rain and it is safe to say that you often had to question is this really July in the UK. This was an extreme challenge and a big step up from the 3 Peaks that we had completed 4 years ago. With the exception of summit night on Kilimanjaro this was the toughest challenge yet. We all had moments over the 3 days thinking (what the fXXX are we doing this for and get me to a dry pub ASAP). There were no comfy beds to go back to in the evening and the boy’s dorm with 10 bunks and low ceilings reminded me of travelling in my 20’s and not in a good way. We were all longing for the comfy bed of the pub in Conwy. We weren’t allowed up two of the peaks: Tryfan and Crib Goch due to the dangerous windy conditions. All of the team were amazing and showed real determination to complete the challenge. The Charity Challenge guides were the right mix of encouragement in difficult conditions and also keeping us safe. The final day was a real struggle for me as I was full of the cold, tired, wet and after 3 days I had had enough BUT the gang were great at keeping me going, my smile had pretty much deserted me by this stage and it was just blissful to arrive at the bottom of Snowdon, have an ice cream and get changed into dry clothes before heading back home. As I reflect back on the weekend now I feel super proud of all of the team there was never any doubt of anyone giving up, we have raised more valuable funds for the wonderful melanoma team at the Royal Marsden who are doing a fine job keeping me well enough to undertake these challenges. In addition, I didn’t think of melanoma once over the whole weekend, as I was too busy worrying about not falling flat on my face. It was a privilege to undertake the challenge with all of the team and big thank you also to the Charity Challenge guides looking after us so well Andy, Rich, George and Fiona were all fantastic as was Sarah with all the lovely food.

Now that the team are home, rested and recovered I have been feeling a bit sad that its all over (you may think this sounds strange but I can assure you that Dave is over the moon that its over!) but there is such a build up and focus goes into these challenges that when they are over you naturally start thinking about what’s next and hoping that I will be well enough to continue undertaking these challenges. They really do help keep me motivated and having a goal to work towards helps me to stay fit plus I can honestly say that it’s as much about the mental side as they help to keep my head clear and I love being out in the mountains.

Of course a massive thank you has to go to everyone whose generous donations have supported the latest challenge. We have now raised over £46k in a little over two years, which is almost beyond my comprehension and for everybody that has donated, taken part and/or organized an event, thank you from the bottom of my heart. It really does inspire and motivate me to do more in the future. We will be receiving a full update on the melanoma research project that the money raised is supporting and I will provide a full update in the next blog.

The last couple of weeks have seen some of our lovely Hong Kong friends passing through London and it has been great to catch up with them. The summer is passing quickly and after spending so many weekends away from London to climb mountains it is nice to spend some time at home. As you head out to enjoy the summer sun remember to slap on the factor 50, cover up, stay out of the sun between 11 and 3 and check your skin regularly and watch out for the ABCDE rules

https://www.melanomauk.org.uk/signs-and-symptoms

You may remember Alfie Ranstead who earlier in the summer did a 50km bike ride to raise funds for the melanoma research at RMH. He also created this fabulous video to help raise awareness about melanoma and how to prevent it. It has been shown to all of the pupils at his school and only takes a couple of minutes to watch. Well done Alfie you are a superstar. https://youtu.be/LpD99yihrNw ,

Thanks as always for all your support and tune in for more shomelanoma adventures next month.

 

 

 

 

 

 

 

Uncategorized

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.

 

 

 

 

Uncategorized

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.

 

 

 

Uncategorized

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.