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Melanoma, the Unwanted Xmas Pressie

As the Strictly glitterball trophy was presented to winner Joe McFadden this weekend, I was experiencing an unwanted early scanxiety. For a couple of weeks I have been experiencing a rather strange feeling in my gums and on the left side of my mouth making it feel slightly numb. I visited the dentist who said my teeth were all good, there was slight inflammation of the gums but nothing abnormal. I left feeling relieved but a week after the dentist visit the numbness was still there and getting worse.

Last Monday I visited Marsden HQ for blood tests, which was due to be the last appointment before Xmas. Given my “If in doubt get it checked out” mantra, I mentioned the gum issue to my lovely nurse. She immediately spoke to my Oncologist and 15 minutes later I was in his office discussing my concern. I will admit that I was feeling like a hypochondriac but was told don’t worry it’s best to address any concerns. He recommended I have an MRI scan in the next couple of days just to check for and hopefully rule out any problems. I left feeling quite relieved, as I was aware that it was bothering me and I was starting to become anxious.

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My scan was booked for Friday and in the meantime I had lots of lovely catching up with the girlsquad to be done plus keeping myself calm with the yoga and pilates classes at Samsara. I have to say that over the last 12 months I have to count yoga as the key to keeping me calm. I am not the most flexible and whilst my competitive and adventurous nature would love to be doing full back bends and head stands (as my physio often reminds me … “remember you’ve had back surgery”) I stretch myself as much as possible whilst also focusing on the breathing and relaxation.

I was also aware that almost 12 months ago to the day, I was experiencing exactly the same anxious wait when the cancerous lymph node under my arm was detected plus the pre cancer cells in the breast, which was the trigger to the January 2017 month of hell.  Anyway I tried to put that to the back of my mind plus nothing can be done about that now, its best to focus on the present.

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The scan came and went. Luckily I don’t get claustrophobic, it’s not pleasant but was over in 25 minutes and I didn’t have long to ponder over results.  We were out on the annual Wimbledon village pub-crawl over the weekend quite an interesting experience as for the first time it was with no alcohol. By the time we reached pub 5, it was jumping and the karaoke band playing “All I want for Xmas is You” not sounding particularly Mariah Carey esque. I almost took to the microphone myself (the Ramages are not gifted with vocal talent) so take it from me it was bad.

Monday morning dawned and I had a slight feeling of dread as we headed off to Marsden HQ for my scan results. I usually have a gut feeling about these meetings and unfortunately this morning, I was not feeling good. We arrived to see Dr Larkin and he told me a new small tumour had been detected in my brain. This new tumour is located in the middle of the brain, which controls the sensory feeling and is why I have been experiencing the numbness in my mouth. It is a different location to the previous tumour. which was in the left frontal lobe.

As you know I am a complex case definitely not boring. I have responded positively to immunotherapy previously but given I experienced a grade 4 adverse liver reaction, it is currently considered too risky to put me back on immunotherapy treatment as I may experience the same issue and it has taken almost 6 months to resolve it. That is not to say that immunotherapy will not be considered in future. I have the BRAF faulty gene in my melanoma and my medical team is putting me onto the targeted therapy Dab/Trab, which works to block the signaling to stop the growth and shrink the cancer cells. This treatment is taken in tablet format twice a day and I should start later this week. I am also booked in for a body CT scan on Friday to set the baseline for monitoring the effectiveness of the new treatment.

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Whilst this is obviously undoubtedly a disappointing development and a set back, it goes to show that melanoma takes no account of Christmas! My good friend Liz said yesterday that I should delete December from my calendar next year as the last two have not proven to be that great! As the infamous ‘Bowelbabe’ says “cock off cancer”. I will be continuing to get on with life as much as normal and I’m hoping that I don’t suffer too many side effects. I have an amazing medical team looking after me at Marsden HQ to whom I am eternally grateful for the care they provide.

After learning the news on Monday and following a lovely walk and lunch in Wimbledon Village with David, I headed off to my oasis of calm Samsara to do my yoga class and distress my mind. I recommend yoga to any cancer patient going through this rollercoaster of a disease.

We are looking forward to a lovely Xmas in London with family and friends and will be celebrating every minute of it. David and I are then planning a week in Cornwall over New Year and Dr Larkin is actively encouraging us to go to his hometown!

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We are also in the process of Danceathon planning for March 10, 2018 and a full update of all the fun planned will be coming soon. Save the date and join us to raise funds for the melanoma team at Marsden HQ.

Ten of us have signed up for the Marsden March on Sunday 4 March 2018, which is the annual 14 mile walk between the two Marsden Hospitals, starting in Chelsea and finishing in Sutton. The deadline for sign-up is early January 2018.  https://www.royalmarsden.org/support-us/marsden-march

We also have a shomelanoma team signed up for the 100km Jurassic Coast on July 22, 2018. If you would like to join us you can sign up here.  https://www.jurassiccoastchallenge.com/

If you would like to host your own Bakeathon, Curry Evening, Quiz or undertake a challenge to help the shomelanoma fundraising please get in touch.  https://www.justgiving.com/teams/shomelanoma

Thanks again for all of the support you have given, all your messages keep me going when times are tough on the melanoma rollercoaster.

Happy Xmas to you all and look out for the next installment of shomelanoma coming soon.

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The Ups and Downs of “the glass half full” Shomelanoma

Most people who know me would testify I am a glass half full girl. I get it from my lovely Dad who always tells me “don’t worry about things until they happen” and is positivity personified. I have always tried in the last 18 months since my cancer diagnosis to stay as positive as possible and the most common thing people have said to me is “stay positive” which I can testify is not always easy. One of the challenges I have found is that I immediately think any pain or twinge is related to my cancer. If I have anything worrying me I wait a few days to see if it subsides and then contact my lovely nurse at Marsden HQ. My motto is if in doubt get it checked out. They are amazing and respond quickly telling me to either go to the GP or come and get it checked.

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I have recently developed horrid red dry skin around my eyes, which has been sore and hurting. I put it down to a new anti -aging eye serum I was using to help any wrinkles. This didn’t seem to do the wrinkles any good and I fairly quickly developed an “I’ve been through 12 rounds with Mike Tyson look”. I contacted Marsden HQ with a photo and they organised for me to see the Dermatologist. One of the many side effects of the steroids I have been on is that they make your skin thin. I can’t tell that it’s thin but I do know it is drinking up moisturizer!

I saw the Dermatologist this week and she did my regular skin check of all my many moles, which were ok plus prescribed a special Elidel cream for my dry skin around the eyes. Hopefully this will get rid of the Mike Tyson look before the party season kicks off.

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The second trip to Marsden HQ this week was for my synacthen test to measure how well my adrenal glands are producing their own cortisone and to see if I could come off the steroids. This involved having a blood test then special injection in the bum (rather painful) and half an hour later another blood test. Fortunately my results were good and I have now been allowed to come off the steroids, 5 months on from the “bouncing off the walls” mega pulse of 1000mg to the 5mg of predisone I have been on for the last 6 weeks. Fingers crossed I wont have any adverse reaction without them but all things considered my body has coped pretty well. I am still being weaned off the mycophenolate and that should be completed before Xmas so I may still reach the goal of being drug free by the time I tuck into turkey on Dec 25. I have one more blood test in 2 weeks and then no appointments until Jan.

I recently had the chance to meet some lovely fellow melanoma patients from the online support group where I am a member. We met up for lunch in London and it was really lovely to share experiences and trade stories of what we are all going through. There were plenty of laughs along the way and to any other observer we looked like a bunch of women out for a girly lunch with no wine involved! If anyone had tuned into the discussion it was somewhat different than the normal girly lunch. A number of the ladies are also treated at Marsden HQ by Dr. Larkin and team so there will now be some familiar faces to catch up with in the waiting room on treatment days.

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With my husband David back at work, I have also been doing a bit of work and did discover recently that my brain was somewhat out of “executive gear”. I turned up a couple of weeks ago to give a client presentation and 2 hours later I walked out feeling quite exhausted. It went well but it had been a while since I had been grilled with questions and had to think on the spot to answer them. I enjoyed it and look forward to getting my brain back into mode more often.

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David still manages to have the odd day off and we recently managed to get off to one of our favourite spots West Wittering a couple of weeks ago. It was a stunning cold November day and as we walked along the gorgeous beach (very like New England) I realised how lucky we are to have all these beautiful spots on our doorsteps. I am now getting excited about the New Year trip to Cornwall definitely one of my favourite places in the world. Last weekend we had a freezing trip north of the border to see the family, which was lovely and caught, up with Mum and Dad plus Catriona and family. As it was SO COLD the boots required for this trip were not the new red ones but the black furry snow boots

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I started my shomelanoma blog to raise awareness of melanoma plus keep family and friends up to date. Sadly, I can often receive a cruel reminder of how awful this disease truly is. Earlier this month, one of David’s friends from Hong Kong (a former work colleague and teammate on the football field), Robin, sadly passed away. Robin had uveal melanoma, which develops in the eye and is very rare and challenging to treat. Despite his own issues, Robin was regularly in contact with both David and I throughout the summer often offering advice, motivation, comparing adverse liver experiences and just asking about our general wellbeing. We caught up a couple of times at Marsden HQ whilst Robin was investigating potential further treatment options; he faced his own challenges with much courage and a good deal of humour. Robin was 47. David attended his funeral earlier this week and all our love goes to his lovely wife Bunty and their 2 gorgeous children, Owen and Ava.

This makes both David and I doubly determined to continue to try and help raise funds to help research better treatment options and ultimately to find a cure for this awful disease.

Ten of us have signed up for the Marsden March on Sunday 4 March 2018, which is the annual 14 mile walk between the two Marsden Hospitals, starting in Chelsea and finishing in Sutton. Please let me know if you would like to join us  https://www.royalmarsden.org/support-us/marsden-march

Next up for the shomelanoma fundraising is the Danceathon, which is now confirmed for March 10, 2018 at Kings Place, Kings Cross, London. More details to follow and if you would like to take part please get in touch You may be missing Strictly Come Dancing after Xmas and this could be the perfect tonic to channel your energies and help raise much needed funds for melanoma at RMC

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We also have a shomelanoma team signed up for the 100km Jurassic Coast on July 22, 2018. If you would like to join us you can sign up here.  https://www.jurassiccoastchallenge.com/

Don’t forget the dryathlon – David, Johnny, Liz and myself have almost reached the 8-month mark. Will we make the year? Xmas is going to be challenging this year.

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

If you would like to host your own Bakeathon, Curry Evening, Quiz or undertake a challenge to help the shomelanoma fundraising please get in touch.

Thanks again for all of the support you have given, all your messages have kept me going when times have been tough.

 

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“Laughter is Good Medicine” Raising Funds for Melanoma at RMH

As I pass my 7-month anniversary of being diagnosed with stage 4 melanoma, I consider myself VERY FORTUNATE to be here living life almost as normal with the exception of a few pills in the morning and evening. My current goal is to be drug free by Xmas, which I was told, is realistic SUBJECT to good blood tests, which I am having every 2 weeks. Every Monday is no longer spent with a trip to Marsden HQ (less people watching at the Ivy Café Chelsea!)

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In the last month, we have been out having fun fundraising for the melanoma team at Marsden HQ. Only 5 years ago, the average life expectancy for stage 4 melanoma was 6 to 9 months and there is still no known cure. The hard reality is whilst I am currently feeling fine, I am only too aware of how quickly things can change. The pioneering immunotherapy treatment – (ipilimumab and nivolumab) I received is very new and while I have been fortunate to respond, I experienced one of the worst cases of grade 4 auto-immune hepatitis seen by Dr Larkin’s team.

There are too many lives lost from this dreadful cruel disease that is melanoma. Only a small proportion of patients respond to immunotherapy and there is much research and work to be done to understand why certain patients respond, who will experience side effects that are demanding to manage plus develop new treatments for patients that don’t respond to immunotherapy. All of this takes years of research, clinical trials and requires a lot of funding.

The Royal Marsden Cancer Charity has committed to raising £15 million over the next 5 years to fund research enabling world-leading experts to run innovative clinical trials using immunotherapy for the benefit of patients everywhere.

The shomelanoma team of my husband David and friends Chris, Fraser and Fiona took on the Royal Parks Half Marathon on Oct 8. It was a beautiful sunny autumn day and as we headed to the start I found myself more stressed as a supporter than I would have been participating. It is normally me that is lining up to participate in these races. I had no need to worry as the team all successfully completed the race in good times with Chris finishing first and Dave, Fiona and Fraser all coming across the line together. They also raised a fantastic sum of money with over £7K raised so far. A HUGE thanks you to all of them and also everyone who sponsored them.

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The fabulous Jonny Awsum hosted a hilarious comedy evening on Oct 18 at the Bearcat comedy club and lined up a fantastic comedy line up of Alistair Williams, Mark Simmons, and Rich Wilson. We laughed, sang and cried and as I looked around the room there were wall-to-wall smiles lighting up everyone’s faces. I haven’t laughed that much for a long time.

Freddie, my good friend Rachael’s son provided the quote of the evening when he told her that “Laughter is good Medicine” and that’s so true. A MASSIVE thank you to Jonny, all the comedians, the Turks Head and everyone who donated prizes, bought raffle tickets and came along to make such an enjoyable evening that raised over £1,500. If you want to catch Jonny’s upcoming shows full details are here  http://www.jonnyawsum.com

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The fabulous Alix Arrowsmith brought her Younique make up tips and goodies to help the girl squad get glammed up for a cocktails and makeovers party evening. It was a lot of fun as the girls tested out new looks for the upcoming party season with Alix on hand to help us create the winged eye look. Some of the looks can be seen below and a HUGE thank you to Alix and all of the gorgeous girlsquad who came along and made it such a fun evening. We will be making a donation to the shomelanoma fund based on the sales from the evening.

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We are now onto planning the next fundraisers and if you would like to get involved hosting your own Cake sale, Curry evening, Quiz night or take part in a challenge to help our fundraising please let me know and we can help you get organized. The Royal Marsden also has many challenges available in 2018, see the attached link for further details:   https://www.royalmarsden.org/support-us/fundraise/events?page=1

The next major shomelanoma fundraiser is the Danceathon, which is going to be a lot of fun. It’s time to show off your dancing skills whilst raising funds for a great cause. We are looking at dates for Q1 2018 and would love to hear from you if you would like to join us.

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David’s no drinking challenge has reached day 216 with Xmas fast approaching he is debating whether his willpower can last through the party season to reach a full 365 days having already turned down a corporate day at the rugby this weekend for fear of succumbing to the free champagne and malbec. Help him resist the temptation and reach that 365-day total.

The shomelanoma team has signed up for the 100km walk on the beautiful Jurassic coast on 21 and 22 July, 2018. If you would like to join us full details are here https://www.active.com/poole/running/distance-running/jurassic-coast-challenge-2018?int=72-3-A1

The total fundraising total is close to £14K. As always thank you to everyone who has supported and donated which is helping the continued research, clinical trials and work of the amazing melanoma team at the Royal Marsden where I am very fortunate to be treated.

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

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

 

 

 

 

 

 

 

 

 

 

 

 

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Fear returns with Scanxiety

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After the blissful month of September back out doing everything I love hiking, travelling, spending time with friends, family and loved ones plus less trips to Marsden HQ (much as I love the medical team) it was back to earth with a bump as October arrived and scans once again loomed. I could hardly believe that 3 months had passed since the last scans, how time had flown. Whilst holidaying in Corsica, for the first time in ages melanoma was out of my mind. I was feeling good, loved exploring Corsica with its jaw dropping coastal views, eating lovely food, relaxing (wearing my factor 50!) and enjoying all that it has to offer. On the current alcohol free regime there was a distinct lack of mocktails and for the first time in a while I felt tempted by a glass of rose BUT I thought of my liver and stuck to the Orezza (local sparkling water). We had a really wonderful trip and here are a few photos.

The return to Chelsea felt all too familiar and I arrived at Marsden HQ with a list of questions for my oncologist. Blood tests, scans and appointments were all booked for later in the week and I felt a wave of back to cancer patient reality hit me. The Ivy Café Chelsea normally my oasis of calm, great people watching and yummy avocado and eggs wasn’t feeling so good that Monday morning as I was feeling anxious.

Scan day arrived and I returned to the hospital for a brain (MRI) scan and a CT scan of my body. The CT scan was over quickly but the brain scan takes longer and involves having a mask placed over your face then going into the donut shaped machine. It’s very noisy (like roadwork’s on the motorway) and makes you feel claustrophobic. I keep myself calm closing my eyes, thinking of some far away beautiful place (or hunky guy!) listen to some good music and breath deeply (the yoga breathing comes in very useful). I then had a weekend of waiting for the results when scanxiety really kicked in. As I have written previously, I usually have a gut feeling about the outcome of scan results. I have been feeling really good BUT there is always that doubt that nags in your mind that something may be wrong. It’s best to try not to torture yourself, keep busy and put it to the back of your mind. I also don’t tell anyone about the exact dates of scans. I have become a bit superstitious about this after my last good scan results and plan to continue following that regime.

The weekend passed quickly with a lovely lunch and catch up with my sister-in-law Katy and a full day of supporting the fantastic shomelanoma team (Dave, Fraser, Fiona and Chris) running the Royal Parks half marathon for the melanoma team at the Marsden, more of that to follow in the upcoming fundraising blog.

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By Monday morning I was feeling anxious although not as sick as I did for the results of the last scans. When arriving at Dr Larkin’s consulting room the door opened and all I saw was a lot of unfamiliar faces. The first thing that entered my head was “Oh god all these other experts are here due to my scan results” I felt more fearful but as soon as I sat down I was told that my scans were good.

I felt a massive sense of relief. The new faces in the room were doctors visiting from Holland and Spain. It’s hard to describe what’s going through your head in these meetings, I often don’t take everything in hence why it’s so good that my rock of a husband David is always there with me to absorb what I am not digesting. Moving forward the current plan is my scans will be every 3 months and I wont be having any more immunotherapy treatment for now. I am now on 5mg of steroids per day from 250mg in June and will come off the steroids completely as soon as my body starts producing its own natural steroids. My blood tests will now move to every 2 weeks. It is early days for me and 6 months on from my stage 4 melanoma diagnosis I know that I am lucky to have responded to the immunotherapy treatment and be currently feeling so well. However, I know things can change very quickly and melanoma is a very unpredictable disease so I am getting on with living life for now and enjoying every day.

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I left the Mardsen with my smile back and this week’s trip to the Ivy Café felt much happier than the week before, it was time for a celebratory lunch and a new pair of boots. The Marsden being so close to the Kings Road is not good for the wallet especially with my love of fashion.

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The last week has been jam-packed with family staying with us, attending the fabulous and glamorous WellChild Awards at the Royal Lancaster Hotel which was a humbling, inspirational evening recognising brave children and their families living with severely debilitating health conditions. We also had the amazing Jonny Awsum hosting the comedy fundraiser in aid of the Royal Marsden and a full report is coming up in the fundraising blog.

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I truly appreciate the amazing care and treatment I am having from Dr Larkin and his team at the wonderful Royal Marsden hospital. You can learn more about the immunotherapy treatment I have received here

http://www.melanomauk.org.uk/news/bbc-panorama-cure-cancer/

Thank you again for all your messages of support, they all keep me smiling. Stay tuned for a full update coming on the shomelanoma team fundraising activities.

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

 

 

 

 

 

 

 

 

 

 

 

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Home Sweet Home and Climbing More Mountains

The last month has seen adventure and holiday girl shomelanoma reappear which I know has been a welcome relief to both my husband David and also the Marsden Medical team (!) Last year after scaling Kilimanjaro (one of my lifetime best experiences), we signed up to Trek 8 Peaks in 48 Hours in the Lake District to raise funds for WellChild. At the time this seemed it would be a minor challenge compared to Kili and one that would be easily achieved. Little did I know that even taking part in the challenge let alone completing it would be a major personal achievement. Back in June while on my staycation in hospital, I didn’t even dare to think that I would be able to undertake the 8 Peaks in 48 Hours Lakes Challenge but it stayed in the back of my head as a goal and one I was determined to undertake.

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Training for the challenge commenced in July when we started getting back out on walks which I loved, it was so good to leave London where it felt that I had been trapped for what seemed like ages. When the medical form arrived for the challenge, I knew this would need discussion with my Oncologist. The next visit to the Marsden I told the team I was taking part in a challenge … “What challenge?” my Oncologist inquired and when I told him the details he asked if there would be any scrambling? No, I responded. He told me he wasn’t going to stop me taking part but did warn of the effects the steroids may have had on my joints and bones making them weaker and told me to take good care.

A trip to Scotland was planned for late August and it was so good to catch up with family, go to the Edinburgh festival and also get out in the hills to do a bit of hiking. It felt great to be out in the fresh air of the Scottish hills and we were blessed with beautiful weather as we scaled Ben Lawyers near Killin in the Trossachs. Only one year before we had climbed this munroe as part of our Kili training and had been unable to see much as it was snowing (and that was in May!) but what a difference a year made. I was feeling the effects of the steroids as my ankles were getting really swollen and I did feel my heart racing climbing up the mountain but as David told me his heart was also racing and it just meant taking a few more stops than normal. We had a wonderful day in the hills and I felt sad leaving Scotland on the return back south.

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During August, I continued to have weekly blood tests at the Marsden to monitor my liver ALT levels, which were now in the normal zone (below 40). The steroid weaning process was in progress and given I had started on such a high dosage 250mg it was going to take a while to get me off the drugs. I have been fortunate not to really suffer many side effects but by mid August I definitely felt I had the steroid moon face (albeit David and the girl squad reassured me that it was more a case of being ultra self-conscious and that it was barely noticeable) and I could feel weight shifting around my abdomen area, which made me feel a bit bloated. However, I was told by the team that given the level of steroids I had been on they were really surprised I hadn’t suffered more side effects and as David reminded me these drugs were necessary to get my liver levels stable again. On the plus side and I know the girls will like this the steroid puffy effect does iron out any wrinkles on your face and makes any ideas of botox or fillers unnecessary ha ha!   There is always a plus for every negative!

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September arrived and I felt excited about the month ahead. First up was the annual girly trip to Copenhagen with my two best girlfriends Jen and Liz. We do a girly weekend every year and these are always special times. In the past these have usually been to sun drenched locations with lots of vino, retail therapy and beach action. This year we had a change and were off to the Scandi style capital Copenhagen. Both Jen and Liz have been amazing friends to me over the years and this year even more, words can’t say how much I have appreciated them being there for me. When I was in hospital earlier in the summer I don’t think any of us thought the girly weekend would happen this year so it was a real bonus I was well enough to go. Copenhagen is a gorgeous city and we had lots of fun. There was no alcohol consumed for the first time ever on a girly weekend but that didn’t matter as we discovered non-alcoholic cocktails and still sat up chatting in restaurants until 2am with the bonus of waking up with clear heads. We were not blessed with good weather apart from the last day when we cycled round the city but that didn’t matter as we went exploring with the waterproofs on and did a bit of retail therapy. The Danes have got their priorities right in life, they are very relaxed, healthy and have some of the most amazing food in the world. We had a special fun weekend and are already onto planning the destination for 2018!

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Next up was the Lake District 8 Peaks in 48 Hours Challenge. Having taken part in these challenges over the last few years I knew I was definitely at my least fittest compared to previous years. I went to see my physio Des the day before setting off and told him I would be listening to my body and wouldn’t do anything daft. It wasn’t a race it was about completing the challenge. Friday morning dawned and we all set off to meet the rest of the group to start scaling the first mountain Hellvelyn (the first peak of 8). A number of the Kili team were also doing the challenge and it was so good to see them all and catch up. I started off in the front group but by the top of the Hellvelyn I knew that the pace they were walking at was going to be too quick so we moved into the second group. This felt much better as there were more breaks and I felt more comfortable. We climbed 3 Peaks on day one and day 2 scaled 5 Peaks including Scafell Pike. David and I had been up this mountain 2 years before as part of the 3 Peaks challenge and had seen nothing at 3 am in the morning in the pouring rain; it was fascinating to retrace the steps up Scafell Pike in the daylight. We were lucky to have clear views for the whole day and dry weather (a rare occurrence). I absolutely loved the 2nd day of climbing and a huge thank you must go to the WellChild safety team who look after us so amazingly well on these challenges. It is no mean feat getting 48 climbers of mixed fitness and ability safely up and down 8 mountains with no major injuries. I was feeling quite euphoric completing the challenge and on a real high, we celebrated with a becks blue at the local pub in Keswick and were already onto discussing the next mountain challenge, watch this space.

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David and I are now heading off to Corsica for a much-needed proper overseas holiday the first since my stage 4 melanoma diagnosis. I have had my picc line removed so that I can go swimming and more of the trip in the next blog.

I am now down to 20mg of steroids a day and when I get back from Corsica hopefully that will go down further assuming the liver ALT levels stay normal. Fingers crossed I will soon be off these drugs, get rid of the steroid puffy face and be feeling normal again with no major issues. I will be back to see my Oncologist on return from holiday and my next scans will be coming up next month.

I have learned and gained much support from the online support group melanoma-mates but this summer has been a sad time and there have been a number of members who have lost their lives to this vicious disease far too early and it is heartbreaking. It does further highlight how much more there is to do in finding a cure for advanced melanoma.

I am excited that we have a number of shomelanoma fundraising initiatives coming up in October and would love you to come and support them.

The shomelanoma team of David, Chris, Fraser and Fiona will all be running the Royal Parks Half Marathon in London on October 8 to raise funds for the melanoma team at the Royal Marsden.

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

On October 19, the amazing Jonny Awsum will be hosting a comedy fundraiser in aid of the melanoma team at the Royal Marsden. Full details here, please come along bring your friends and help us raise funds for a very special cause.

http://buytickets.at/jonnycomedyfundraiser/115668

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The no alcohol challenge continues and David has now reached day 168 (6 months on October 10) to support him reach day 200.

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

The date for the upcoming danceathon is to be confirmed, more coming in the next blog.

Thank you again for all your messages of support, they all keep me smiling. Stay tuned.

 

 

 

 

 

 

 

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Getting Normality Back To Life – What is the New Normal?

IMG_3153Following one of my recent visits to Marsden HQ, I began to think about one of the questions posed by my consultant when she asked “And what is the new normal for you Shiona, you’ve had a somewhat stormy year?” At that point, I realised visiting the Marsden two or three times a week had become the norm this summer but more worrying was the fact, I didn’t even question it.

Its been a couple of weeks since my last blog post and during that time I have been in steroid drug reduction mode getting myself weaned off my energy boosting drugs. This has been a slow process and one that I can only imagine in my head as similar to a withdrawal from cocaine. As of today, my liver ALT levels are now normal (36) for the first time since May and my steroid level has been reduced to 50mg/day. The medical team had warned me about the length of the weaning process in advance and fortunately my body has been able to withstand the relatively high steroid dosage without too many side effects, although I am now starting to get a bit of the attractive puffy moon face. Following a trip to the world athletics championships last week, I did get a bit of a wake up call and was feeling quite exhausted by the end of the day. Prior to my cancer diagnosis, I have never been one for taking a lot of medication and was very reluctant to pill pop unless absolutely necessary but that has all had to change … my initial daily dose was around 18 pills with my breakfast followed by another 6 pills before bed. Fortunately my morning steroid pills have steadily reduced from 10 to 4 pills, which is more bearableIMG_3135

I also decided it was time for a follow up to check what was going on with the pre-cancer cells in my right breast. Whilst this has always been much less of a risk than my melanoma it was still lingering in the background to be dealt with. A trip to the breast consultant was booked and following a positive meeting with my consultant the plan was to have a mammogram in 6 months and treat the breast cancer with tamoxifen (more tablets!).  At the request of the melanoma team this treatment will not start until the steroids have reduced further (as all tablet medications ultimately end up in the liver and they don’t want this to complicate my progress).

David did pose the question as to whether the immunotherapy treatment for the melanoma could have had any impact on the pre-cancerous breast cancer and once again the quote “We don’t know … you remain a very interesting and complex case for us “ came up. The reality is that the immunotherapy treatment I have had for my melanoma is so new we are still in the realms of the unknown if it will have had any impact on treating the pre-cancerous breast cancer cells.

Looking back I am so thankful that I didn’t go through with the mastectomy and reconstruction at the same time at the axillary lymph node clearance as I would have just been recovering from that surgery when the tumor was discovered in the brain which would have been pretty devastating for me.

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So that brings you up to speed on my current medical situation, now for the fun things, I am now in full holiday planning mode starting with a trip to the famous Edinburgh festival next week to take in some shows, visit my Scottish family plus climb a couple of munroes as part of the WellChild Trek the Lakes 8 Peaks in 48 hours training plan, which takes place in mid September.  Before the WellChild trek I am off to Copenhagen with Liz and Jen for our annual girly weekend, which will be followed by a much-needed holiday for both David and I to lovely Corsica. David has requested that we have a couple of days of R&R before I plan any stages walking of the famous GR20 whilst we are there!  Lets see …

I have also returned to do some work which has been a relief to get back to my marketing as that also brings normality plus it is my passion and its great to get back using my brain doing what I love.

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We are also in full steam ahead planning fund raising activities for the Melanoma team at the Royal Marsden. Coming up in the next couple of months, we have planned a comedy fundraiser on 19th October with the fabulous Jonny Awsum and Guests. We also have a shomelanoma team running the Royal Marathon Parks Half marathon on the 8th October. Huge thanks to David, Fraser, Chris, Fiona and Katie for volunteering to run. A date and venue for the Danceathon will also be coming soon

I am also getting myself back to full fitness and health, which has also been a welcome relief. My bike is in for a full service and will soon be back out on Richmond Park. Yoga and Pilates has resumed and walking training for the Lakes is full speed ahead. There is no doubt that having a strong positive mindset has been hugely important in the last few months. This feels good as it helps me feel I am in control.

Thank you again for all of your support and messages, they are hugely appreciated and I hope to see and catch up with you all very soon.

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Here is my god daughter Imogen, her sister Felicity, brother Cameron and cousins getting creative with their fundraising for shomelanoma in Scotland this week – ” guess the number of sweets in the jar ”  Well done team !

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

 

 

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Don’t look back in Anger ! – My Top 10 Learning’s since Melanoma Diagnosis

Dont look back in anger

“Don’t look back in Anger “ by the legendary Oasis was my song of the 90’s, I was an original Brit pop girl and seeing Oasis at Knebworth in the summer of 96 was a highlight of my 20’s. As I have had time to reflect since leaving Royal Marsden HQ on the last year since being diagnosed with Melanoma and thinking how life has changed (my cancer anniversary was June 16, one year since diagnosis and not a celebratory day), but here’s what I have learned.

Don’t look back in anger – On receiving the news, I had Melanoma, I tortured myself for the following few days, weeks and months on what I could have done to prevent it. All those summers in the South of France walking up and down the beach selling chou chous as a student followed by 7 years in Hong Kong basking myself on junks and not protecting my type 2 Scottish skin as well as I could have. I was ignorant to the fact that once my mole was removed that that was the end of it but when told “it’s not a great diagnosis” and there was 50% chance it would return, I started to realise the full severity of my situation. But you can’t control the past, and whilst anger is completely understandable, it felt like wasted energy and emotion. 

Get ready for an emotional rollercoasterA cancer diagnosis is an emotional rollercoaster – get ready for the ride. I do worry as a lot of the focus is on myself as the patient but there’s also my husband David, family and friends who have all been significantly impacted by my diagnosis too and have been a HUGE source of strength and support to me whilst dealing with their own rollercoaster of emotions. I very much appreciate those around me and never take anyone for granted. The key is to try and keep perspective on the inevitable highs and lows along the journey. 

It’s OK get upset and cry – It took a long time for me to cry and get upset; I saw it as a sign of weakness against my stubborn Scottish ways. If there is one thing I dread it’s when people start feeling sorry for you. But sometimes, it’s good to cry; the process can be overwhelming and it helps to get it out your system. It does make you feel better and it’s not a sign of weakness.

Not one but two cancers – Well as if being diagnosed with melanoma was not bad enough, December 2016 saw all my Christmases’ come at once and I also received the news that I had pre-cancerous cells in my right breast together with cancerous cells in my left lymph nodes. We learned this news on December 21 just prior to celebrating Christmas with our families’ and it was pretty devastating. I had had one of my gut instincts that all was not right after returning from Kilimanjaro but I will never forget the look of utter shock on David’s face when we were told, it’s not good news. The melanoma was the greatest risk to be dealt with and has led to the current treatment path followed.

Take control and become an educated empowered patient I am HUGELY fortunate to be treated by Dr Larkin and his excellent team at Marsden HQ. In the early stages of diagnosis, I needed and wanted to learn as much as possible about melanoma, the treatment options and I turned to Dr google. This is not always the best solution as there is often outdated information, frightening statistics and this led me to become naturally anxious and worried. I have educated myself listening and learning from other patients via an online support group, Melanoma UK has also excellent information and resources plus I have found social media an excellent source of the latest treatments. You should never lose sight however that everybody is unique both in terms of diagnosis together with physical and mental health, therefore treatments will often vary based on individual circumstances. My rationale is that I want to have an active empowered role as a patient with the medical team in discussion about my treatment.

Get a 2nd Opinion – January 2017 started badly and looking back it was an awful month for many reasons; David and I spent a lot of time at doctor’s appointments discussing treatment plans and due to the pre-breast cancer DCIS diagnosis, I was 3 days away from having a mastectomy, reconstruction plus the axillary lymph node removal in one large operation which would have been emotionally and psychologically devastating. I owe a huge thank you to one very special nurse at the Royal Marsden who advised I should have a second opinion, which thankfully I did. This changed the course of my treatment for the better, all my care was moved to the Royal Marsden and I felt 110% more comfortable being under the medical team there. Don’t be afraid to ask for a second opinion, it’s the patient’s right, doctors expect it and in my case it turned out to be the best thing that happened.

Have fun and smileLife goes on with cancer; don’t let it define you. Even in the darkest days of Jan 2017 and during my time in hospital, there was still laughter, fun, smiles and amusing moments that have helped get through the rollercoaster.

IMG_3058Stay fit and healthy as possibleI have always been a fitness fanatic and Yoga has been my saviour over the last 6 months. It has helped me relax and really keep my head straight. I also stopped drinking alcohol when I started immunotherapy and that helped keep me emotionally on the straight and narrow. I can now see a gap in the market for more decent mocktails and non-alcoholic drinks beyond elderflower presse. My tipple of the moment is Seedlip non-alcoholic gin. I can take back control of my fitness, limit bad habits and lead a healthy life as much as possible and that feels good.

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I am a complex caseI have heard this said a lot! In fact it’s probably the most frequent quote I’ve heard when I meet a doctor. I sometimes wonder, is it punishment for all that partying in Glasgow, France and Hong Kong? One thing’s for sure, I am starting to know and recognize doctors, nurses, receptionists (& patients) at my second home this summer Marsden HQ.

Don’t treat me any differently – I am still the same Shiona I was before I was diagnosed with melanoma. Sadly one in two of us will be diagnosed with cancer during their life and I am getting on making the most of it. I still love marketing, adventure, climbing mountains, challenges, fashion, travel and hanging out with friends and family. I have learned don’t sweat the small stuff it’s not worth it, don’t waste time doing things you don’t enjoy. You only get one life, enjoy every day to the max. You don’t know what’s around the corner and in many ways it has helped me understand and appreciate the important things in life.

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A quick update … My liver levels have now reduced to near normal levels so weaning off the energy bunny steroids has begun this week. I am still on very high levels of the steroids and its going to take time but I am currently feeling good, so let’s see if I can beat the doctors expectations in the time frame getting them reduced.

I had a gorgeous birthday on the Dorset coast staying in the lovely Pig on the Beach. It felt so good to get out of London, to walk along the coastal paths and we had a beautiful couple of days. I’m now planning the next mountain climbing training in the Lake District and Scotland here we come.

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I started writing my blog to help raise awareness of melanoma where prevention is the only cure. The current immunotherapy treatment I have received is cutting edge and the team at the Royal Marsden led by my Oncologist is at the forefront of this treatment. More however needs to be done to understand why some patients respond to immunotherapy and why some don’t and also to treat the serious adverse effects from the treatment. There has been much advancement in melanoma treatment over the past 5 years and we need continued investment in clinical trials to keep advancing. There is much work still to be done. Unfortunately there currently remains no known cure.

We have started the shomelanoma fundraising initiative to raise funds to help with the Royal Marsden future research and development of effective treatment for patients with melanoma. All funds will be allocated to the research and development fund administered by my oncologist Dr James Larkin – see attached link:

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

More will come on the next blog about the shomelanoma fundraising and this has kicked off with the current  month’s fundraising challenge my husband David’s additional 10O day no drinking challenge, (he is currently on day 111 of his 200 days in total ) If you would like to host a bake sale, quiz, curry evening, car boot sale ,Marsden March or take up a challenge to support the shomelanoma initiative please get in touch and we can get this set up.

Save the Date – Upcoming fundraisers

Oct 19, 2017 – Jonny Awsum, star of Britain’s got Talent comedy show.

Danceathon – Date TBC – If you are interested to join us, please get in touch

Oct 8 – Royal Parks Half Marathon – running for the Marsden team

 

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Manic to Happy Mondays in SW19, London

It was manic Monday at Wimbledon for more than just the epic five set match, which saw Rafa Nadal exit the tournament. As all of Wimbledon was buzzing with the excitement, I was in a mad panic worrying about going to the Marsden to get my scan results and see if the ipi/nivo immunotherapy treatment was working for me. As fellow cancer patients will know the anxiety surrounding scans and results is something that you have to learn to deal with in your own way, it’s not easy and very stressful. The words of advice given to me by Dr Wood, after my first set of scans stuck with me. He told me you have to find your coping mechanism and then get on with your life. Personally, I find keeping myself as distracted and occupied as possible between the scans and results works well plus I am a big fan of yoga and that helps me relax.

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To bring you up to speed, I was finally discharged from the Marsden on July 4 after 3 weeks in hospital. This was after a 5-day mega pulse on high steroid dose that made me feel I was bouncing off the walls. (As someone who already has a lot of energy this wasn’t a good experience) In fact, on the Saturday evening, I had so much energy I was tempted to go and dance it off in Brixton at the Ministry of Sound but didn’t think that would go down so well with the nurses (or David!). The good news was that this finally saw my liver ALT levels come down far enough that I was able to be discharged which as you can imagine I was over the moon. Dave and I left the hospital with a suitcase load of drugs to take home as I had been transferred from taking the drugs intravenously to orally. I was warned that my body would take some time to adjust and if the levels increased I would need to be readmitted. I also had to come to the hospital every morning to have my bloods checked. None of that mattered though as I was so excited to get home and sleep in my own bed and felt on cloud 9.

 

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It was really blissful to be back at home and have some normality back in my life. Even walking to the gym on my own and doing a workout felt so good. I was also excited to go to watch Wimbledon the day after I got home which was a special treat and catch up with family and friends. On Friday my gorgeous girlfriends “the girl squad” had planned a pre-birthday lunch for me and this was an amazing afternoon. At one point, I seriously thought I’d be going from the hospital heels on tottering out of the Marsden.

Friday morning was stressful as I had my scans first both brain MRI and body CT then bloods done before rushing home to get set for the birthday lunch. I didn’t tell anyone about the scans, as I just wanted to enjoy the afternoon and weekend and also have time for David and I to process the results once we received them on Monday. Friday afternoon was such a happy occasion, my two very special friends Liz and Jen plus 10 other girls pulled out all the stops, the venue, company, food, drinks, laughter, presents, games and fun were just the tonic I needed. This was me sober although don’t forget the steroids! It was such a special afternoon that I will always remember, for the 7 hours over lunch we had a blast with some of the lovely friends and family that have helped support me through the last 12 months. I was very spoiled and it was a gorgeous. Huge thank you to all of you who came it is massively appreciated.

 

The weekend was also lovely seeing family then friends who were over from Hong Kong where David and I used to live.

Monday morning arrived all too quickly and I was feeling panicked at the prospect of getting my scan results. Normally when going for scan results I have a gut instinct of how things are going to go. I sometimes find that it is easier to prepare yourself for the worst and then anything better is a bonus. This week I didn’t have a gut instinct how it was going to go and when I woke up I felt calm. This didn’t last though and on arrival at the hospital my mind was all over the place imagining all sorts of scenarios. Luckily David was there to keep me calm.

It was soon time for my appointment and walking into the room I felt sick. I sat down and my doctor was smiling and said your scan results are good with no evidence of any new melanoma spread and the tumour in the brain has also shrunk; this means that the immunotherapy treatment has worked and my immune system has been taught to recognise and fight the cancerous cells. The best way to describe it is that the immunotherapy has stopped / halted the melanoma in its tracks.  For some patients this can be a long-term status whereas for others the cancerous cells find a way of again overcoming the immune system, hence the need for regular monitoring/scans. There is no doubt this is the best news we could have hoped for and I felt a wave of euphoria come over me and felt so happy. This is the best birthday present I could have and I am currently on a high on the shomelanoma rollercoaster.

I want to say a HUGE thank you to all the melanoma medical team, nurses, catering and cleaning team at both Granard House 2 and the Marcus Ward at the Royal Marsden who have looked after me so amazingly well. I feel hugely fortunate to be cared for at this very special hospital.

I started writing my blog to help raise awareness of melanoma where prevention is the only cure. The current immunotherapy treatment I have received is cutting edge and the team at the Royal Marsden led by my Oncologist is at the forefront of this treatment. More however needs to be done to understand why some patients respond to immunotherapy and why some don’t and also to treat the serious adverse effects from the treatment. Unfortunately there currently remains no known cure.

We have started the shomelanoma fundraising initiative to raise funds to help with the Royal Marsden future research and development of effective treatment for patients with melanoma. All funds will be allocated to the research and development fund administered by my oncologist Dr James Larkin – see attached link:

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

More will come on the next blog about the shomelanoma fundraising and this has kicked off with this month’s fundraising challenge my husband David’s additional 10O day no drinking challenge, i.e. 200 days in total!!

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My Extended Stay at Royal Marsden Hospital HQ

When I checked into the Royal Marsden HQ on June 13, I didn’t for one minute expect to still be here over 2 weeks later and facing my 3rd weekend here; I don’t think my medical team did either. However, as I was told every patient is unique and my liver enzyme levels have stubbornly refused to fall far enough so the steroid dosage has been increased. (Will I soon look and feel like the incredible hulk?) The reactivation of my immune system has been described as akin to slamming your foot down on an accelerator pedal … i.e. difficult to control, as there is no on/off switch. So here I am still in residence at the Marsden 16 nights now and counting and it’s becoming VERY frustrating to say the least.

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Over the last week, I realised I underestimated the adverse affects that can result from the immunotherapy treatment. When my doctor told me at the onset of the treatment I needed to stay in London over the 12 weeks, it was now clear why this was the case. My patience has been tested to the max, however I am now in the daily routine of being awoken early each morning to have my bloods taken and then have the morning treatment intravenously. I was fitted with a PICC line last Wednesday (a tube inside a vein just above the right elbow which feeds round to the main veins my chest) as they were struggling to administer the treatment through a cannula in my arm – my small veins could only take so much and my right arm looks like that of a drug addict (allegedly) covered in bruises. I am then free from around lunchtime and return to the hospital in the evening around 9pm for the next treatment and to sleep.IMG_2887

Residing in Chelsea has not turned me into a Sloane (there was some concern from my cousin north of the border that this may be the case), but I have been enjoying the delights that Chelsea and Kensington have to offer. Whilst the hospital food is ok, I have been out and about enjoying the local dining scene and have been eating pretty well at the local restaurants from oysters to sushi, tapas and fish its all been tasted over the last couple of weeks. As we live relatively close by to the hospital, I have also gone home for a couple of afternoons, which has been blissful. It’s amazing how the simple things like showering at home feel so good when you haven’t been able to do them for a while.

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Special friends and family have continued to keep me entertained coming to visit, take me out for the day and keep me well distracted and for that I feel very blessed. A visit from a good friend Susan from Ireland and all my lovely HK girls was lovely and just the tonic I needed after a very frustrating week. We had a gorgeous tapas lunch, spent the afternoon in Hyde Park on deck chairs and finished off the evening sampling mocktails in the Ivy Café.IMG_2890

I also sneaked off for a pamper afternoon with my favourite hairdresser Craig and this was a welcome relief to have complete distraction and relax for a couple of hours. I thought this may need to be cancelled but fortunately doctor visits were moved to the next day and I had control of my life back for the afternoon. As you know girls there is nothing like a trip to the hairdresser to make you look and feel good.

The lack of control over your life is one of the hardest things to deal with as a cancer patient and I have really felt my life is completely out of my control this past 2 weeks. You have to live day by day and also keep your expectations in check. I have found this challenging especially when it looked like my liver (alt) levels were starting to fall only for the next day’s results to show they had stalled or slightly increased. When I have felt disappointed, David, lovely friends or funny messages have helped to keep me going with a big smile.

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The medical team at the Marsden have also been amazing explaining everything to me, visiting me daily and I have also had fun and laughter with the nurses on the ward. They have all looked after me like a VIP for which I am hugely grateful.

I started writing my blog to help raise awareness of melanoma where prevention is the only cure. The current immunotherapy treatment I have received is cutting edge and the team at the Royal Marsden led by my Oncologist is at the forefront of this treatment. More however needs to be done to understand why some patients respond to immunotherapy and why some don’t and also to treat the serious adverse effects from the treatment. Unfortunately there currently remains no known cure.

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We have started the shomelanoma fundraising initiative to raise funds to help with the Royal Marsden future research and development of effective treatment for patients with melanoma. All funds will be allocated to the research and development fund administered by my oncologist Dr James Larkin – see attached link:

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

More will come on a future blog about the shomelanoma fundraising but to kick things of his month’s fundraising challenge is David’s additional 10O day no drinking challenge, i.e. 200 days in total!!

 

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An Unscheduled Stay in Chelsea

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Its been an eventful week ! no one ever said being a cancer patient was dull. I was due for my 4th immunotherapy treatment this week and arrived at the Marsden for my regular blood tests on Tuesday as planned. I had started to feel nauseous and was losing my appetite in the few days running up to the blood tests and had reported this to the team. Arriving home from the Marsden, I had literally just walked through the door at home when the phone rang telling me to immediately pack a bag and come back to the hospital. My blood tests revealed that my liver levels had gone off the scale to dangerous levels and they needed to admit me to hospital to get this under control. I was in complete shock and felt upset as I quickly threw clothes in a bag and ordered a taxi to take me back to Chelsea.

On arrival, the doctor told me that my liver ALT levels (which is a measurement for the liver) had gone from the average person’s reading of 40 Units/litre to in excess of 1200 Units/litre, which is a very dangerous level and needed to urgently be addressed to prevent complete liver failure. This increase of over 30 x the normal level had occurred in the 3 weeks since my last blood tests & immunotherapy treatment. To decrease the liver inflammation, I was put on a course of high-level intravenous steroids to control the adverse reaction to the immunotherapy treatment, i.e. my own immune system had started to attack my own liver. As a consequence, I would also not be receiving my final immunotherapy treatment.

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It all became clearer after a visit from Dr Larkin and his team who explained that this was the 2nd most common adverse side effect from the immunotherapy experienced by patients and it also demonstrated that my immune system had been kicked into action which was after all the original goal of the treatment. Unfortunately, the immune system doesn’t have a switch or trigger point, which automatically re-sets it, so each patient is unfortunately subject to an element of trial and error and effectively my own immune system had started to attack my liver.

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The liver levels have started to drop but not sufficiently enough so in addition to the steroids, I am now also having infusions of antibiotics to help the situation twice a day, two hours a time. I really just thank my lucky stars that I gave up alcohol, as I would not be allowed to drink now however, I definitely am looking forward to having a glass of champagne when my liver has started behaving again.IMG_2866

Fortunately, I have been allowed out of the hospital during the day and the Kings Road, Chelsea is not a bad place to hang out for the day. It didn’t take long for a bit of retail therapy to take place and even although I am staying in hospital there’s no excuse for a girl not to have nice nails right! We have also been exploring the local restaurant scene, which is pretty decent with lots of “Made in Chelsea” good-looking girls and guys. If you’re single girls there is definitely plenty of eye candy walking around. On Friday eve we stopped in one open-air bar and with my mocktail and dance music when I shut my eyes I momentarily felt transported to Ibiza.

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I have also had plenty of entertainment with David taking me out every day and treating me like a princess and all of the lovely friends and family who have been popping in for coffee, lunch and dinner. I even saw the lovely Fiona Cumming my gorgeous friend who was over from Hong Kong for the weekend, which was a special treat.

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Back to reality, it’s back to the Marsden this evening and I will see my doctor tomorrow morning to see how things are progressing. If the levels are reducing I hope I will be discharged and can be treated as an outpatient which will be lovely to get home (much as I love the Kings Road).

The team at the Marsden looking after me are amazing and I feel so fortunate to be cared for such a top medical team. Prevention is the cure for melanoma so as temperatures soar over 30 degrees in the UK remember to slap on your factor 50, protect your kiddies and look out for changes in your moles. Stay tuned!