Melanoma, Mind Games and a Big Adventure

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

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

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

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

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

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

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

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

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

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

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

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

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

Living with Cancer – A Partner’s Perspective

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

As always, your support is greatly appreciated.

 

HUGE THANK YOU as Shomelanoma Fundraising exceeds £30K for Melanoma at the Royal Marsden

It’s been a glorious summer in London town made even better after the Shomelanoma team completed the Jurassic Coast 100km on one of the hottest weekends of the year over a tough course (you were so right Fred Edwards), which sent the fundraising spiraling over £30K. The Jurassic coast is truly stunning and we were sent on our way with a morning all from football manager Harry Redknapp who was queuing for breakfast at his local Sandbanks Café. The nudist beach at Studland provided further walking sights although unfortunately no David Beckham or David Gandy lookalikes that morning. It was a tough slog on a boiling hot weekend and due to blisters, vomiting and feeling delirious Colin, Tony and Phil  completed the full 100km with the rest of us finishing after 58km on day 1. Huge congratulations and thank you to all of the team Phil, David, Tony, Sam, Michelle and Colin, who took part, the support crew who were there smiling at the rest stops and everyone who has donated to all of the fundraising efforts it is massively appreciated.

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Just 2 days after the big walk it was hiking boots off and heels on for the glamorous Women’s Chapter Travel and Fashion event in aid of the Royal Marsden hosted by my amazing friend Michelle de Klerk who had also completed the Jurassic Coast walk. Tamara Lohan founder of Mr and Mrs Smith shared her experience on setting up a business and her top travel destinations and Stylist Deborah Sheridan-Taylor showed a capsule wardrobe, which was gorgeous. I said a few words about my melanoma journey and the fabulous work of the melanoma team at the Marsden and it was a hugely enjoyable evening. Huge thank you to Michelle and the wonderful Women’s Chapter.

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Over the summer, I have been trying to forget the melanoma, I still have the daily reminder with the numbness on the left of my mouth but in the grand scheme of things it’s minor and as long as it doesn’t affect my talking ability that’s fine. Following the Jurassic coast adventure, I set off for the French Alps with good friends Jen and Liz plus their kids. I was really excited about the trip as it felt good to be travelling out of the UK again (not something I had done since Corsica last year). I used to be going to an airport every other week with work but now I associate it with a special times and the fun of going on holiday.

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The French Alps trip was action packed and it was fabulous spending quality time with my 2 gorgeous best friends and their children Clem, Felicity, Imogen and Cameron. We loved hiking in the mountains, swimming, laughing, eating, and had lots of fun; melanoma went straight to the back of my mind. I was sad to leave France and once back in the UK over the next few days I started to become aware of a more frequent abdominal pain on my left side. After a week or so, with the if in doubt get it checked out mantra, I contacted my nurse at Marsden HQ and she arranged for me to go for a review with the doctor. After examining me, having blood tests and seeing that I was anxious he agreed to move forward my CT body scan. I felt relieved as the next scans were not due for another 3 weeks and I hadn’t had a body scan since early April. Fortunately the wait was short and the scan results were clear and I felt massively relieved.

Dave and I escaped off to Scotland for the August bank holiday and luckily it coincided with the next big fundraising challenge – Kirsteen’s Great Scottish Swim in Loch Lomond. Now for those of you who don’t know Scotland – Loch Lomond is the largest stretch of inland water in the UK just north of Glasgow. Its beautiful but swimming there is not for the faint hearted as its cold, deep and choppy definitely no bikinis required even after a heatwave summer it was wetsuits all the way. After the sat nav eventually got us to the right location via central Glasgow (who knew that there were two places called Balloch in Scotland!?) we arrived to see superstar Kirsteen successfully completing her swim. She did an amazing job, look as cool as a cucumber and was still smiling through her exhaustion as she got out of the water. Kirsteen was fundraising for Melanoma research at the Royal Marsden and also for Pancreatic Cancer UK in memory of her lovely father. We all spent the afternoon enjoying the Scottish sunshine and catching up over lunch. Congratulations to Kirsteen, thanks for all your amazing support.

 

During the time in Scotland I was again able to put melanoma to the back of my head. However as soon as I returned to London the MRI brain scan at Marsden HQ was looming ahead. I had my brain scan last week and had the weekend scanxiety wait before the clinic appointment with Dr Larkin on Monday. I felt calm but as we all know going in for scan results is like a game of roulette you just never know how the results are going to land. Fortunately today was good and 9 months on from starting targeted therapy Debrafenib and Trametinib (Dab/Tram) it continues to work its magic and it is currently effectively controlling my melanoma. My tumour has reduced in size and is now stable. As I have said previously the challenge is on average the melanoma develops resistance to the drugs after about a year, which is why it’s vital to continue supporting new research and drug trials to continue developing new treatment options for melanoma patients.

There are some exciting plans coming up for the Shomelanoma fundraising. Next up is the Royal Parks Half Marathon on October 14, Dave, Fraser and Sarah are signed up for this and Dave has even started training. A curry night will be organised soon to support the fundraising efforts.

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

A new challenge is taking place north of the border when my gorgeous cousin Iain is taking things to another level with a sponsored waxathon. Let me just leave this to your imagination, it’s taking place on Nov 10 and more details will be coming soon.

A final word on upcoming challenges, I dreamt last night I was swimming the channel, when I woke up I was paddling hard and not moving fast. This told me (as did David) that NO, this would not be the next challenge. As Jen said to me today, I think you should stick to hiking and cycling…

As the hottest summer on record in the UK comes to a close please continue to protect your and your kiddies skin, don’t get burnt, wear your factor 50 in the UK and overseas and stay out the midday sun. Check your moles every month and if in doubt of any changes see your GP. Don’t join the statistics 7 people die of melanoma in the UK every day and once it spreads its very difficult to control. Sunbeds have been shown to contribute to rising cases of melanoma and we want them banned in the UK as they already are in Brazil and Australia. Melanoma UK  is leading the charge so please help save lives by signing and share the petition below.

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

Stay tuned for the next installment of Shomelanoma, which will be a guest blog from my rockstar husband Dave.

 

 

 

 

 

 

Another Year Older and Wiser with a CANCER Birth sign!

Birthdays I love them, another year older and wiser (Mr H may disagree about that one !) or so they say. The aging part, I used to like less “it’s just a number right” but now I don’t care and every birthday is to be celebrated in style as another milestone when I am still very much alive here having fun making the most of life. It may have taken stage 4 melanoma to have me thinking like this but there’s got to be some positive to this awful disease. As for the wiser, well I have learned more about melanoma in the last month after being fortunate to attend the Melanoma Patients Conference on June 22/23 where a host of medical experts, patients, partners, charities and pharmaceutical companies shared the latest information on treatments available, patient support and care. The conference also offered the opportunity to meet up with other patients face to face and share experiences of life on the melanoma rollercoaster good and bad.IMG_1079

Some key developments from the conference included the introduction of adjuvant treatment (treatment given to help decrease the chance of cancer recurring) for stage 3 melanoma patients. This has already been approved in the US and should receive approval in the UK soon having shown positive results in trials. This will likely involve patients in less intrusive surgery once the melanoma has spread to the lymph nodes with a more localized approach to removal of the affected lymph node(s) followed by immunotherapy to try and clear any residual issues. For example, I had 20 lymph nodes removed under my left arm in February 2017 with the associated risk of developing the serious side effect of lymphedema. This is an exciting development for patients as just last year as a Stage 3 patient, the only option was to “watch and wait” to see if the melanoma came back, which is obviously difficult as a patient having only a reactive rather than proactive strategy to manage the disease.

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I also particularly enjoyed the patient presentations from Dr Lauren Cara on de-mystifying the role of diet and its impact and Kay English Curtain on Understanding the Statistics. One of the biggest challenges in being a cancer patient is the loss of control on your life but diet and educating yourself to understand treatment options and statistics are two things you are most definitely in control of and personally help you better manage your disease, which feels good. By the end of the conference my brain was hurting and I felt a bit overwhelmed. I also had a worry on my mind as in the few days leading up to the conference I had felt as if the numbness in my mouth was spreading which was making me feel anxious.

After the conference, David and I headed down to Devon to meet good friends Jen and Paul for a lovely weekend of R and R just what was needed and I momentarily forgot my worries. Back in London, the following Monday we had a meeting with Dr Larkin to discuss the Team Shomelanoma fundraising for the Marsden melanoma research projects. I mentioned my concern about the numbness in my mouth and he agreed that we should bring forward my next scans and fortunately they had a slot the next day. I spent the next few days going through the usual scanxiety before the Monday morning appointment. Monday arrived with me convinced that I was to be told bad news but fortunately I was told that there was no evidence of further progression and my scan was fine. The difficulty with sensory nerve damage (which is where my tumour has affected part of my brain) is that it can create a strange numbness sensation. I felt relieved and so much more relaxed departing Marsden HQ.

The melanoma research meeting was really interesting and Dr Larkin highlighted two of the research efforts that the Team Shomelanoma fundraising can support. The first project is looking at immunotherapy toxicities to get a better understanding of why some patients experience such severe side effects from the treatment. This has personal relevance as many of you will recall I spent 3 weeks last summer at Marsden HQ due to developing autoimmune hepatitis as a result of the immunotherapy treatment. The goal of the research is to identify a panel of biomarkers that will identify patients at risk of immunotherapy toxicities. The second project is looking at circulating tumour DNA using blood based markers for cancer monitoring to predict the evolution of disease and response to treatment. These are both much-needed projects that will hopefully translate for patient benefits soon. As the research progresses, I will keep you updated. I have now been on my current treatment Dab/Tram for 7 months and, touch wood, it has been effective at controlling my melanoma. However the challenge is on average the melanoma develops resistance after about a year. It’s vital that medical research and trials are supported to continue developing new treatment options for melanoma patients.IMG_1095

On a very sad note, a fellow Royal Mardsen melanoma patient and YouTube vlogger, Emily Hayward sadly passed away last month, aged 24. I never met Emily but became aware of her when she featured in a Channel 4 Stand Up to Cancer documentary last October. She regularly uploaded her vlogs onto her YouTube channel and had in excess of 50,000 subscribers across the world. She wanted to share her journey in the hope that more people would become aware of the seriousness of melanoma but more importantly to remind everyone that you can still live life to the max even whilst living with cancer. It shouldn’t take cancer to make people realize this but we only have one life, so please live it well. RIP Emily and thank you for sharing your courage and positivity with us all.

This weekend we will be undertaking the next MAJOR Shomelanoma challenge of the Jurassic Coast 100km. There have been a few injuries along the way but the team is fighting fit and ready to go on Saturday morning at 8.30am from Poole. David who has already successfully completed the 100km on the South Downs 9 years ago has been sharing the photo this week and it has been noted he has not aged much since then! However lets see how the bodies are feeling on Sunday when we eventually complete the 100km walk they may be feeling and looking their age at that point. The excitement is mounting, we are looking at a hot weekend and we will post updates on Facebook and look out for the Team Shomelanoma photos. Huge thanks to Michelle, Colin, Phil, Tony, Sam and of course my rockstar husband who is back doing this challenge for the 2nd time because he has forgotten how painful it was the first time. !!! In all honesty we have loved the training walks (thank you Phil for organizing) and the girly chats around Richmond Park with Michelle and with Jen in the Chilterns.

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

Huge thank you to everyone who has supported us in the latest challenge and all other events to date. It really does help to keep me focused and motivated to do more. We are tantalizing close to cumulatively hitting £30K raised in the last 12 months and we would love to see the magic number hit this weekend!

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

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A final word on this year’s birthday I had a lovely birthday week, it kicked off with a family wedding in Wilmslow and an England world cup win in the local pub (don’t tell the Scottish family!!) I spent a gorgeous birthday hiking on the South Downs with a pub lunch followed by dinner at the favourite seafood restaurant Wright Bros that has a new outpost near Battersea Power Station and the best Oysters in town. On Saturday I had a bonus treat of the Nadal vs. Djokovic match, which was amazing, followed by the ladies tennis final. I was also lucky to catch up with some of the gorgeous girls squad including Ms Majorca 312 Melissa Tarver It has been lots of fun another year older and wiser don’t forget the motto – don’t sweat the small stuff and enjoy every day!

If you would like to support Team Shomelanoma fundraising organise a curry eve, bake sale, pub quiz or sign up for your own challenge to support then let me know and we can help organise it.

More to come soon on the aftermath of the Jurassic Coast 100 KM plus the gorgeous Kirsteen Higgins adventure swimming Loch Lomond and Team Shomelanoma takes on the Royal Parks Half Marathon – Part 2.

 

 

 

 

 

 

 

 

 

Two years on and living life to the full with Stage 4 Melanoma

The churning stomach exam nerves returned to SW18 earlier this week after a blissful 6 weeks of no visits to Marsden HQ. After 2 years of going through scanxiety it just never gets any easier and the mind plays games with you, as the scans get closer. I woke up the other morning thinking I had been in an MDT meeting listening as my Doctor discussed my latest results. It took a few minutes for me to realise I hadn’t actually had the scans yet and I was a week too early. The scan date arrived and I kept occupied awaiting the results going furniture shopping in West London, walking 23 miles in the Surrey Hills training for the upcoming Jurassic coast 100km with Team Shomelanoma and catching up on gossip with the gorgeous Denise Callow who was over from my old stomping ground Hong Kong.

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Monday morning arrived and it was good news as Dr Larkin told me the Dab/Tram treatment is continuing to work and the latest scan shows further shrinkage of the tumour in my brain. Of course, I was reminded that it is scan by scan for me and the challenge with the current treatment is the melanoma can develop resistance to the treatment after an average of 10 months. This only reinforces the importance of much needed further research to better understand why resistance develops to the drugs and development of new future treatment options.

In the next 2 weeks, I am looking forward to attending the Melanoma Patients Conference on June 22/23  http://www.melanomapatientconference.co.uk/  This conference will provide information for patients on the current systems of care, treatment access and support for melanoma. It will be attended by patients, carers, leading medical professionals and representatives from Melanoma charities and connected organisations all united in the quest for better outcomes. I am particularly excited as I was due to attend this conference last year but it coincided with me experiencing the adverse side effects to immunotherapy treatment and the start of my 3 week stay at Marsden HQ.

I will also be meeting with Dr Larkin this month to learn more about the current melanoma research projects that require funding and will share more details about this and the melanoma conference in the next blog.

Team Shomelanoma has been very busy in the last few weeks and the fabulous news is the fundraising total has now reached almost 26K which is just amazing news. I want to send a HUGE thank you to each and everyone of you who have been taking part and supporting all of the fundraising activities.

In the last month alone, we have had everything from Melissa Tarver’s extreme Majorca 312 cycle race definitely not for the faint hearted to Chris Lloyd’s Brighton marathon where he smashed his personal best. On the social side Lindsey Graham’s office had a “Wear what you want to work day” and Jennifer Clark hosted a Girls Curry night in Thame, which was lots of fun and the curry’s tasted better than most at any Indian restaurant. Liz Martin and my rock star husband Dave also recently completed the 365 days of the Dryathlon, which also raised more funds. Liz celebrated with a drinks party where she had one too many and Dave had a few glasses of red after winning a golf tournament with his brother. I am still on the teetotal regime and that’s not to say I’ll never drink alcohol again but for now I feel happy with it, my rationale being I am taking strong drugs to control my melanoma and my body is already dealing with enough. Saying that if you had told me a year ago how easy it has been to stop drinking, I wouldn’t have believed you. I have also been reading I am now part of a growing trend of adults who are reducing/abstaining from alcohol (perhaps not for the same reason as me!).

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Next up for Team Shomelanoma is the Jurassic Coast 100km walk on July 21/22. The team are training hard and I am loving being back out hiking in the gorgeous UK countryside plus we’ve been blessed by the recent gorgeous weather. From Skye to the Isle of Harris, North Downs, South Downs to the Chilterns I have been lapping up the fresh air which has been clearing my head, helping me feel well and banishing melanoma to the back of my mind. Saying that my legs were shot this week after 3 big hikes in the one week and I crawled into the physio on Thursday for some relief. I am also back in the gym doing strength training plus David was surprised to walk in last week and see me standing behind the sofa doing the bingo wing workout. I explained I was using tins of tomatoes as weights and he commented that in the grand scheme of my current health issues bingo wings are the least of the problems !!!

We have also been lucky to have an amazing holiday to the Outer Hebrides in Scotland last month. Having been fortunate to travel to many wonderful places around the world this was up there with the best of them. It was peaceful, gorgeous, remote and really everything that we needed. At times, I had to pinch myself that we were actually still in the UK. The unfriendly sound of the tube rattling by in the morning was replaced with being awakened by the sound of the lambs outside the door. Larry the lamb from the Isle of Harris is definitely one of the best looking lambs in the world hence why the Harris Tweed comes from there. There are also some of the most beautiful beaches and when the sun shone you could have believed you were in the Caribbean. My woolly hat gives it away that even although the sun was out it was still pretty cold but it didn’t matter we had an amazing time. As one friend told us there is no such thing as bad weather only the wrong clothing and the bikini was definitely not needed for this holiday. We also spent time in Scotland catching up with a lot of the family and Dave was fortunate to play in the first Brian Oates memorial golf day to raise funds for Crohns and Colitis, which was lots of fun.

Since the return from Scotland summer has arrived in the UK. I started this blog to raise awareness of melanoma through telling my story. May was melanoma awareness month and more still needs to be done to get the message through to the public to protect their skin, check their moles regularly and slap on the sunscreen in all weathers to prevent skin damage. If you want a tan faking it is a far better option than getting baked. For more information on skin safety please refer to Melanoma UK http://www.melanomauk.org.uk/about_melanoma/faqs/

As I approach my 2 year cancerversary on June 15, I continue to be hugely grateful to the medical team at Marsden HQ led by Dr Larkin, CNS Nikki Hunter and all of their teams who continue to look after me so well and are keeping me on this planet, plus my wonderful hubbie David, friends and family who keep me smiling, enjoying every day to the max and are there to pick me up when I am feeling down. Cancer, I have learned is as much of a mental as physical disease.

If you would like to support Team Shomelanoma fundraising organise a curry eve, bake sale, pub quiz or sign up for your own challenge to support then let me know and we can help organise it.

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

More to come soon on the Jurassic Coast 100 KM plus the gorgeous Kirsteen Higgins adventure swimming Loch Lomond coming up in August.

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

https://www.justgiving.com/fundraising/kirsteen-higgins4

Watch this space for more to come from Team Shomelanoma

 

Happy Days and One Year On with Stage 4 Melanoma

The Melanoma rollercoaster is currently on a smiling high after good scan results showing further shrinkage to my brain tumour and the body scan remains clear. Over the last couple of weeks, I started to feel the numbness in the left upper side of my mouth was becoming more noticeable and my immediate concern was this must indicate that the tumour was growing. However, my doctor explained that this could be due to nerve damage or inflammation and of course your mind can plays tricks with you as we saw in the run up to the last scans. Today I am also reflecting that it is exactly one year to the day that I started my immunotherapy treatment following on from my stage 4 melanoma diagnosis, and  am feeling blessed to still be here. It also represents one year with no alcohol (albeit I am tempted for a glass of bubbly today!!) plus feeling grateful for the support from my rockstar husband, family and friends and of course the amazing care from Dr. Larkin, Nikki, Lewis and the wonderful team at the best hospital – Marsden HQ.

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March has been an amazing month for Team Shomelanoma and we recently reached our heady fundraising target of £20,000 for melanoma research at the Royal Marsden. Back in June during my 3 weeks staycation at Marsden HQ when we set up the fundraising I didn’t begin to think we would reach the target in 9 months. A HUGE thank you to everyone who has danced, run, walked, laughed, donated and supported, it is massively appreciated and there is much more to come.

I presented Dr. Larkin with the obligatory cheque today and he was absolutely delighted with all the fundraising efforts and asked that his thanks be extended to you all. There are several important melanoma research projects being undertaken by Dr Larkin and his team that require funding; I will be learning more about these projects and will share more about these on the next blog.

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The Beast from the East may have been in town but this didn’t stop Team Shomelanoma getting wrapped up for the Marsden March on Sunday March 4. Unfortunately, although my heart wanted to be on the walk, my head told me that due to the latest fever it wasn’t a good idea. To say I was gutted was an understatement as David trotted off to meet the rest of the team. They had a fun day and well done to the Hines and Hawkins kids who all walked 14 miles with big smiles on their faces and didn’t miss their iphones once. I loved all the messages on their backs brought a wee tear to my eye.  The team raised over £2,000 from the walk (these funds are in addition to the Shomelanoma funds), which will be allocated specifically to improving the care provided to patients and their families at the Royal Marsden hospitals.

 

From the Marsden March to the Danceathon a week later it was time to get the 80’s gear on and the pink legwarmers out. There was no way I was going to be missing this one due to pesky fevers, especially as I had a special guest Natasha Watts flying all the way from Hong Kong and 12 hours of cool tunes to dance our way through with all of the girl squad. It was such an amazing day and so much fun. It was one of those days that everything just came together and it not only fulfilled the goal of raising lots of funds, there were also smiles on the faces of all the kids (& parents!) as they were entertained by the fabulous Jonny Awsum to the dancers who bopped until they dropped for 12 hours. Who needs Ibiza when club classics were pumping their way through Kings Cross?

 

There are massive thank yous to the wonderful Emma Williams and her fantastic team at Green and Fortune for generously donating the danceathon venue, my gorgeous sister- in-law Katy for coming up with the idea and helping organise the event and her husband Sam who designed the website and organised music and DJs plus Jonny Awsum and Matt Edwards for all their entertainment plus all the sponsors who donated raffle prizes – Gibson Girl, The Training Works, Womens Chapter, World of Craig, By Sarah and Seedlip Drinks.

After all the fundraising excitement David and I escaped for a weekend of R and R to the beautiful Southwold on the Suffolk coast. Spring was in the air as we walked along the stunning beach, around the harbour and sat outside for a pub lunch. It didn’t last long however as the Beast from the East mark 2 blew in and on Saturday evening I was in bed with the woolly hat, red nose on alert and with eyes shut feeling as cold as I had on summit night of Kilimanjaro. Watching the Everest film was probably not the best idea to help matters but it did give me a taste for going to basecamp …

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Back in London it was lovely to attend the WellChild Awards launch and catch up with all the team there. I was also able to get the pink bomb suit as David named it out of the wardrobe (it hadn’t been in there for long) for the glamorous night out.

We are now planning the next holiday to sunny Scotland and are off to the Outer Hebrides. I am so excited to visit Skye, Harris and Lewis and get the climbing boots back on. And to get training for the upcoming 100km walk. Lets hope the sun shines and the fevers stay at bay we are a long way from Marsden HQ although only a phone call away.

Coming up over the next few months for Team Shomelanoma :

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

My gorgeous friend Melissa Tarver is taking on one of the toughest amateur cycling challenges on April 29 – the Mallorca 312 which Cyclist magazine says “Is as tough as it gets” to raise money for the melanoma team at Marsden HQ. Full details of her challenge are here.

https://www.justgiving.com/fundraising/melt312

Team Shomelanoma (nine of us) are signed up to do the 100km walk on the Jurassic Coast on July 21 and 22. Training walks are about to begin BUT its not too late to join us

https://www.jurassiccoastchallenge.com/

Another gorgeous friend Kirsteen Higgins is undertaking a crazy challenge and will be swimming Loch Lomond in August. Most of you will know swimming in Scotland is more associated with the Arctic than the Mediterranean so this is one mean challenge where the bikini is not required.

If you would like to organise a curry eve, bake sale, pub quiz or sign up for your own challenge to support the shomelanoma team fundraising let me know and we can help organise it.

As you all know I started my blog to raise melanoma awareness and May is Melanoma awareness month so Iook out for a BIG awareness drive coming your way soon.

Thanks again for all your support, messages and keeping me smiling and having fun, more to come soon XX.

 

 

ANXIETY kicks in on the Melanoma Rollercoaster

Much as the Scottish rugby team is having a rollercoaster start to this year’s Six Nations championship, I seem to be having a similar experience with my melanoma. After the drama of New Year trips to A and E, I settled back into Jan life in London. We had a January “let’s get the finances in order” trip from the financial advisor to discuss consolidating pensions. I have to admit that as I sat on the sofa and listened about different options and how much money a year we wanted in retirement, I couldn’t help thinking how the immediate priority was funding my staying alive, fashion, going out and holiday fund for the next 3 months far less worrying about 20 years time given my current situation

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The side effects of the latest drugs calmed down and there haven’t been anymore fevers. However a couple of weeks ago as I was heading into Marsden HQ for a check up with the Dermatologist I noticed red patches had started appearing at the bottom of my legs. These were checked out and steroid cream prescribed to deal with them. A few days later whilst doing a downward dog in my yoga class I felt my ankle sore and a bit swollen. I contacted Marsden HQ to let them know and was informed to stop taking the drugs immediately and come in for an ECG (a test to check out your heart function) as swelling in the legs is again a side effect of the drugs and can be an early sign of associated heart issues.

The ECG ultrasound was an interesting experience with a male nurse who had definitely got out of bed the wrong side that morning and me decked out in my hospital gown with my chest covered in some lovely jelly substance (not the eating variety). I have got to the point now where these things just don’t bother me but I did think if I was being photographed now it would make for amusing viewing. I got the results later that day and was relieved to learn that my heart was functioning normally but was told not to go back on the drugs until the swelling had gone down.

The last month has also brought home how difficult it is to plan ahead when living as a stage 4 cancer patient. We had been due to travel to Yorkshire for a family weekend but after enjoying the opening night at our friend, Tony’s, latest venture – Small Beer in Crouch End – which was cut short due to me experiencing a dizzy spell, we took the decision to cancel that and stay at home for a relaxing weekend instead. Two weeks prior to this we had been due to go ski-ing with good friends in Morzine but after the A and E trip at New Year, the thought of being stuck in a ski resort needing to get to the closest hospital in Grenoble was not attractive so again we decided to cancel it. I hated having to do this but the reality is planning and paying for holidays months in advance just doesn’t make any sense, it is now scan by scan and book at the last minute. I won’t even enter the minefield of travel insurance given my current situation.

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As I approached my upcoming scans to see if the Dab/Tram was working I started to feel a bit concerned. Firstly my mouth was still experiencing some numbness on the left side and I had started to notice some twinges around my abdomen just below my ribs and these seemed to becoming more frequent. This was making me very anxious and I have to admit the run up to these scans has been the worst yet. I tried to stay calm and took myself off to meet up with my gorgeous friend Jen for lunch and a day in town. We had fun catching up on gossip and treated ourselves to a bit of retail therapy which took my mind off things for a while plus a new dress and funky boots were purchased to wear for David’s birthday dinner.

 

I had got to the stage whereby I had self-diagnosed and convinced myself of the likely next treatment … “Gamma knife and more immunotherapy” I advised David. In his calm and more rational approach, David responded “Let’s await the results of the scans rather than hypothesize on your self-diagnosis.”

When scan day arrived last Thursday I was back to feeling anxious and it was not helped as it took 6 goes for the nurses to get me canulated for the CT and MRI scan. The cannula is used to inject the radioactive dye contrast that is used to show up any cancer on the scan. Once the scans were done there was a long weekend of waiting for results. Yoga, walks across Wimbledon common, watching Scotland playing rugby helped me stay occupied (watching Scotland at any sport is always stressful) fortunately they played well against France and it was a brilliant game. I didn’t ‘sleep on Sunday night tossing and turning all night and woke up feeling exhausted and nervous on Monday morning. I had convinced myself the latest drug treatment was not working and my mind was in overdrive. Arriving at Marsden HQ fortunately I didn’t have long to wait to get into see the doctor.

I almost passed out with delight and relief when I was told the scan results were good and my brain tumour had reduced by approximately 50% plus my body remained clear.

As I have mentioned in previous blog posts I usually have a pretty good gut reaction on these meetings but I was totally wrong on this occasion. David and I left Marsden HQ with a big smile on our faces and headed to the favourite Ivy Café Chelsea to celebrate with a gorgeous breakfast. I know I have not been the easiest to live with over the past few days so a HUGE thank you to my rock star husband David and best friends Liz and Jen who help get me through the build up to these scans. Jen sent me a gorgeous card on Friday and this made me smile when I was not feeling the best.

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Fingers crossed that these drugs continue to be effective and in the meantime I continue to owe a HUGE thank you to the wonderful medical team at Marsden HQ who are currently keeping me on this planet and enjoying life to the full.

Danceathon - Instagram

The upcoming Shomelanoma Danceathon is now just over 3 weeks away to raise money for the melanoma team at Marsden HQ. There is a fantastic fun-filled day planned with non-stop dance classics. The venue is the glamorous Rotunda, Kings Place, Kings Cross, London and the music will be pumping for 12 hours to keep us entertained. Jonny Awsum who many of you will remember from the comedy night will be taking to the mike for the kid’s hour and we have international DJs spinning the music. We would love you to join the fun, full details and tickets available here bit.ly/2ESnNLc .  You can also  support the team dancing for 12 hours

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

Before that, we have a team doing the Marsden March on Sunday 4th March, which is full but you can join us on the Jurassic Coast Walk on 22/23 July, full details available here.

The Marsden March is now full but you can join us on the Jurassic Coast Walk on 21/22 July, full details available here.

https://www.jurassiccoastchallenge.com/

My gorgeous friend Melissa Tarver is taking on one of the toughest amateur cycling challenges – Mallorca 312 which Cyclist magazine says “Is as tough as it gets” to raise money for the melanoma team at Marsden HQ. Full details of her challenge are here.

https://www.justgiving.com/fundraising/melt312

Another gorgeous friend Kirsteen Higgins is undertaking a crazy challenge and will be swimming Loch Lomond in August. Most of you will know swimming in Scotland is more associated with the Arctic than the Mediterranean so this is one mean challenge.

If you would like to organise a curry eve, bake sale, pub quiz or sign up for your own challenge to support the shomelanoma team fundraising let me know and we can help organise it.

Now we are looking forward to celebrating David’s 45th birthday this weekend, stay tuned for more adventures on the shomelanoma rollercoaster.