2018 – Health, Happiness and a Night in A and E

As the glasses were tinkling, fireworks blasting and Auld Lang Syne sung around the world we were snuggled in bed at the cosy cottage in Port Isaac, Cornwall not even making it to midnight. For the first time in years (probably since childhood) I was not up partying downing the tenth glass of champagne as 2018 rang in. New Year felt different this year and not because we weren’t up partying but I guess given the rollercoaster of 2017 and all of the run up to Xmas it was good to catch up on sleep, chill out and relax.

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After my shock unwanted Xmas present, the medical team at Marsden HQ moved quickly to get me started on my new combination treatment of Dabrafenib and Trametinib. I was sorry that I couldn’t continue on the immunotherapy treatment since I had responded to it previously and when I mentioned this to Dr Larkin he told me it was currently too risky due to the adverse liver reaction I had experienced. This was not to say that they would not consider putting me back on immunotherapy in the future.

My new treatment is targeted biological therapy that blocks the activity of certain molecules within the cancer cells that control the cell growth. The combination of dabrafenib and trametinib work to block the signalling pathway at two different places in the molecular pathway that promotes the growth of cancer cells. The dabrafenib switches off the mutated BRAF proteins and the trametinib switches off the MEK proteins, so that they no longer send and transmit signals telling the cancer cells to grow.   Around 50% of melanoma patients have the faulty BRAF gene in their molecular make-up, including myself. I was fully briefed on the new drug regime which fortunately doesn’t involve hours hooked up to an intravenous drip and is in pill format taken orally twice a day 12 hours apart. There is a new laundry list of side effects to become familiar with the most common of which is fevers, which must be dealt with quickly. I started taking the new drugs on 21 December.

I also had a body CT scan on 22 December and fortunately was told that the scan was all clear when we met with Dr Larkin on 27 December. The scans now form the baseline to measure the effectiveness of the new treatment.

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We had a lovely family Xmas in East London where Sam and Katy hosted an amazing fun day filled with family love, gorgeous food and some excellent non-alcoholic bubbly (for David and I). We woke up on Boxing Day with clear heads, no hangovers and full stomachs from the day before ready to head off to Cornwall to celebrate New Year. On Dec 29 we headed off for a much needed week of R and R to the beautiful village of Port Isaac who most people will know as the Doc Martin village. We were lucky to be able to catch up with good friends who were over from Hong Kong, Lucy and Dickson, their boys and Lucy’s parents for a pub lunch en route to Cornwall.

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We had a gorgeous cosy cottage near the centre of the village and got out and about exploring the local area. A walk along the SW coastal path to Port Quin and back tested out the leg muscles and reminded us that training for the Jurassic Coast 100km needed to start soon. The waterproofs were soon put to use as the heavens opened and we got pretty wet. It did feel great to be out in the fresh Cornish air away from London. We also had a visit on New Years Day from good friends Tony and Sam our fellow Kilimanjaro adventurers who live in Devon and came down with their gorgeous 4-legged friend Jasper.

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By the time Jan 2 arrived, I was starting to feel unwell. I hadn’t slept very well and it felt like I had a bad flu coming on, was developing a temperature, felt a bit nauseous and had the shakes. After going out in the afternoon I felt a bit better but by the evening after taking my medication again I started to feel worse. By the time I was ready for bed my temperature had reached 38.8 degrees and it was time to call Marsden HQ; the Marsden operates an out of hours service for such occurrences. We had no phone reception in the cottage so David went down to the harbour and called the emergency hotline and I’m sure was able to pronounce the drugs I am taking with eloquent precision!! They advised I needed to be urgently taken to the closest A and E in Truro to be checked out by a doctor.

David drove an hour to Truro just as Storm Eleanor was taking force, google maps initially taking us down a single file country lane with quite severe localised flooding … not being able to turn around, we had to drive through the floods and hope for the best! We arrived at A and E in Truro just after midnight and the wonderful Marsden HQ had already sent a medical file to the hospital there. Given the current pressures of A and E a nurse who did all my observations plus blood tests saw me fairly quickly. I was then also found a bed in the A and E area whilst waiting on the Doctor. It was an extremely busy night and I have a full appreciation of the pressures that the NHS is under having seen patients queued on trolleys with my own eyes.

The lovely doctor arrived to see me around 3.30 and by this point my temperature had gone down below 38 degrees and I was feeling a bit better. He said that it was possible I had caught an infection and normally they would give me a flush of antibiotics and send me on my way. However given it was likely to be caused as a side effect of the Dab/Tram I knew that it should not be treated with antibiotics. One of the challenges for the doctors in A and E is many of the side effects of cancer drugs are similar to other illnesses and there are also so many new drugs to treat different cancers that non-specialists can never be expected to keep up with. I appreciated the Doctor’s honesty around this and can further see the challenges this presents. Through discussion with the doctor, he was happy that my situation was stable and that we would contact the team at the Marsden to decide the best course of action as if necessary we could travel back to London first thing.

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At 5am we arrived back in Port Isaac, David having driven through Storm Eleanor (I missed most of it as was fast asleep) and flopped into bed. Before going to sleep David contacted the medical team at Marsden HQ via text to let them know what had happened and by 6.30am we had a response telling me to stop taking the medication for 24 hours and take paracetemol, ibuprofen, drink plenty of fluids and see how I felt.

The next day I still wasn’t feeling that great and given the weather was pretty awful, we decided to drive back to London the following day, which was only a day earlier than planned. I felt better being back in London and knowing that if anything further was to happen I was close to Marsden HQ. By the Friday I was feeling much better and I went in to have my bloods checked and everything was still ok and was told as soon as I felt well enough to start back on the medication which I did the following day. I was back at the hospital on the Monday for more blood tests and Dr Larkin explained to me that it was possible I would experience further fevers, as this was the most common side effect on these drugs but it may be the case I don’t experience it again. I do now feel better prepared in how to deal with it and recognising the symptoms early. I am now a week on with taking the drugs again and not wanting to tempt fate am feeling well again.

So there’s never a dull moment in the life of a stage 4 melanoma patient, and the last week has been busy doing a bit of work, getting back into the fitness and catching up with some lovely friends.

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I am also back fully focused on the melanoma fundraising efforts for Marsden HQ and a huge thank you to Emma, Katy and Sam we are ready to launch the Danceathon on March 10 which will raise valuable funds to enable the Melanoma team at Marsden HQ continue their research, run trials and continue to develop new treatments . Get your dancing shoes on bring your kids for a fun filled day out at the superb Rotunda London. Full details on how you can join us are available here and we’d love as many of you as possible to come and dance for the day.

https://shomelanomadanceathon.wordpress.com

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

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

https://www.jurassiccoastchallenge.com/

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

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

A huge thank you as always for all of your support, and New Year good wishes it is hugely appreciated. The 2018 mantra is health, happiness and enjoy every day.

 

 

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