Cancer · Fundraising · Living with Cancer · Melanoma

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Cancer · Fundraising · Living with Cancer · Melanoma

Its May – Melanoma Awareness Month and Time for the Skipathon

Living scan to scan can take its mental toll and as you know I have been on a bit of a rollercoaster over the last few months.  As my last scans had showed an indeterminate anomaly with a chest lymph node on my scan I was feeling slightly nervous as I headed to the Marsden for my latest results last Friday.  It sometimes feels like turning up at the teachers door for exam results not knowing if you have managed to scrape past or not, except in this case the results can have a much more fundamental meaning as there may be no resits. This may sound over dramatic but I felt rattled to the core earlier this year after my experience earlier in March plus I also saw from 2 other friends who also had stage 4 melanoma just how quickly things can change and they are sadly no longer with us.

I am a glass half full person and live every day to the fullest as my Dad taught me that and cancer has made me even more determined that that’s how I’ll be living my life. I used to be worrying about deadlines for work or what I’d be wearing to the next party but that all falls into insignificance when you are waiting to hear if you’ll sill be alive and kicking in 3 months time.  Of course no one knows that but living with not one but 2 cancers means my odds are not ones you would be betting the house on. Saying that and with my positive hat on I am still here four years on from that stage 4 melanoma diagnosis and that almost certainly wouldn’t have been the case 10 years ago. So my trip to the Marsden on Friday was a good one, my latest scan results are all good, there is no issue now with the chest lymph node and my Oncologist was correct it was likely due to the COVID vaccine. I left the hospital armed with cycle (months) 42, 43 and 44 of the wonder targeted drugs Debrafenib and Trametinib looking a bit like a Mexican drug lord and felt elated to be passing go for the next 3 months.   Thank you as always to the fantastic melanoma team and also a big thank you to the radiology team. I am a frequent flyer at the Marsden for scans I haven’t counted the number I have had but it is a LOT. The radiographers are amazing calming the patients, chatting to you knowing your name as they see you there so often and putting you at ease while understanding you  are going through a stressful experience. They are then reporting on the scans in super speedy turn around time so that everything is ready for your doctor by the next appointment. They are some of the unsung heroes at the hospital and often go under the radar when they play such a key role in your overall care and deserve a big thank you.

With the lockdown starting to lift in the UK I have been beyond excited to catch up with friends and family. It has felt so special to see people in person and such a treat to go out and eat dinner. It was also lovely to get out of London and see the hiking gang and those simple things that you used to take for granted are really a special treat. We are also in countdown mode for our trip north of the border after 3 cancelled trips from the autumn through Xmas plus we have had to postpone our planned trip to the Outer Hebrides until next year, however, we are all set to head there later this month and cant wait to see the gorgeous parentals and family.

As we reach the start of May it’s Melanoma Awareness Month and Team Shomelanoma are kicking off the Skipathon Challenge starting today May 1. It’s going to be a lot of fun, we’ll be skipping for 10 mins every day and there’s going to be some funny videos and pics to share.  I have to say a HUGE thank you to everyone who has signed up for the challenge and a big mention to Christchurch and Holy Trinity Primary School where my lovely friend Avis Hawkins is Head Teacher and approximately 400 of the children there will be joining the Skipathon for the month to help raise funds for melanoma research at the Royal Marsden. Having seen some of them practicing their skipping this week they are looking pretty good.  We’ll be sharing some fun photos and videos throughout the month so look out for them, we are beyond excited to get going well some more than others David will be getting his new skipping rope out of the bag tomorrow and attempting to skip for the first time in many years, look out for that video.  Full details of the skipathon .

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

I also have to say a BIG thank you to gorgeous friends Chris Lloyd and Nicki Millward who both took part in the virtual Royal Parks Half marathon on April 11. Chris ran along the banks of the Thames with David alongside him on his bike for moral support. As many of you know Dave is a regular at the Royal Parks half marathon (he is featured in the Marsden Progress Magazine this month) but he is saving himself for the next Royal Parks half marathon in October so that he can get his running back up to speed. Jane and I were on our bikes too in the support crew and Chris finished in a good time under 2 hrs. Nicki was running close to home in the Malverns and also did an excellent time of 1 hr 54 Thank you to both of them and everyone who supported their amazing effort.

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

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

https://www.melanomauk.org.uk/the-abcde-rule

Thank you as always for all of your support. I’ll be back soon to report on a full update on the Skipathon next month.

Cancer · Fundraising · Living with Cancer · Melanoma

Back on the Cancer Rollercoaster and Vaccine Time

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

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

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

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

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

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

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

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

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

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

Cancer · Fundraising · Living with Cancer · Melanoma

Its December 2020 – The Forgotten 2nd Cancer

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

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

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

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

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

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

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

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

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

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

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

Cancer · Fundraising · Living with Cancer · Melanoma

Scanxiety in Service Stations and the next Shomelanoma Challenge

On a high in the Peaks

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

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

Team Shomelanoma training around Henley

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

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

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

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

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

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

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

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

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

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

Team Shomelanoma training on Devon’s SW Coastal Path

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

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

Escaping Lockdown with Stage 4 Melanoma and Milestone Birthdays

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

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

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

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

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

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

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

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

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

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

 

 

 

 

 

 

 

 

 

 

 

Cancer · Living with Cancer · Melanoma

Lockdown Life with Stage 4 Cancer

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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.

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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.

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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.

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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.

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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!!

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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.

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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.

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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.

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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.

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Fundraising · Uncategorized

The DECEMBER Factor and a HUGE THANK YOU.

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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.