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.

 

 

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.

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.

 

“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

 

 

 

 

 

 

 

 

 

 

 

 

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

 

 

 

 

 

 

 

 

 

 

 

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.

 

 

 

 

 

 

 

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