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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Cancer · Living with Cancer · Melanoma

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.