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.

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.

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.

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.

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.

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.

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.

Home

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.

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.

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.

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.

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!

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.

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.

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.

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.

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.

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