Two years on and living life to the full with Stage 4 Melanoma

The churning stomach exam nerves returned to SW18 earlier this week after a blissful 6 weeks of no visits to Marsden HQ. After 2 years of going through scanxiety it just never gets any easier and the mind plays games with you, as the scans get closer. I woke up the other morning thinking I had been in an MDT meeting listening as my Doctor discussed my latest results. It took a few minutes for me to realise I hadn’t actually had the scans yet and I was a week too early. The scan date arrived and I kept occupied awaiting the results going furniture shopping in West London, walking 23 miles in the Surrey Hills training for the upcoming Jurassic coast 100km with Team Shomelanoma and catching up on gossip with the gorgeous Denise Callow who was over from my old stomping ground Hong Kong.

IMG_5440

Monday morning arrived and it was good news as Dr Larkin told me the Dab/Tram treatment is continuing to work and the latest scan shows further shrinkage of the tumour in my brain. Of course, I was reminded that it is scan by scan for me and the challenge with the current treatment is the melanoma can develop resistance to the treatment after an average of 10 months. This only reinforces the importance of much needed further research to better understand why resistance develops to the drugs and development of new future treatment options.

In the next 2 weeks, I am looking forward to attending the Melanoma Patients Conference on June 22/23  http://www.melanomapatientconference.co.uk/  This conference will provide information for patients on the current systems of care, treatment access and support for melanoma. It will be attended by patients, carers, leading medical professionals and representatives from Melanoma charities and connected organisations all united in the quest for better outcomes. I am particularly excited as I was due to attend this conference last year but it coincided with me experiencing the adverse side effects to immunotherapy treatment and the start of my 3 week stay at Marsden HQ.

I will also be meeting with Dr Larkin this month to learn more about the current melanoma research projects that require funding and will share more details about this and the melanoma conference in the next blog.

Team Shomelanoma has been very busy in the last few weeks and the fabulous news is the fundraising total has now reached almost 26K which is just amazing news. I want to send a HUGE thank you to each and everyone of you who have been taking part and supporting all of the fundraising activities.

In the last month alone, we have had everything from Melissa Tarver’s extreme Majorca 312 cycle race definitely not for the faint hearted to Chris Lloyd’s Brighton marathon where he smashed his personal best. On the social side Lindsey Graham’s office had a “Wear what you want to work day” and Jennifer Clark hosted a Girls Curry night in Thame, which was lots of fun and the curry’s tasted better than most at any Indian restaurant. Liz Martin and my rock star husband Dave also recently completed the 365 days of the Dryathlon, which also raised more funds. Liz celebrated with a drinks party where she had one too many and Dave had a few glasses of red after winning a golf tournament with his brother. I am still on the teetotal regime and that’s not to say I’ll never drink alcohol again but for now I feel happy with it, my rationale being I am taking strong drugs to control my melanoma and my body is already dealing with enough. Saying that if you had told me a year ago how easy it has been to stop drinking, I wouldn’t have believed you. I have also been reading I am now part of a growing trend of adults who are reducing/abstaining from alcohol (perhaps not for the same reason as me!).

IMG_0697

Next up for Team Shomelanoma is the Jurassic Coast 100km walk on July 21/22. The team are training hard and I am loving being back out hiking in the gorgeous UK countryside plus we’ve been blessed by the recent gorgeous weather. From Skye to the Isle of Harris, North Downs, South Downs to the Chilterns I have been lapping up the fresh air which has been clearing my head, helping me feel well and banishing melanoma to the back of my mind. Saying that my legs were shot this week after 3 big hikes in the one week and I crawled into the physio on Thursday for some relief. I am also back in the gym doing strength training plus David was surprised to walk in last week and see me standing behind the sofa doing the bingo wing workout. I explained I was using tins of tomatoes as weights and he commented that in the grand scheme of my current health issues bingo wings are the least of the problems !!!

We have also been lucky to have an amazing holiday to the Outer Hebrides in Scotland last month. Having been fortunate to travel to many wonderful places around the world this was up there with the best of them. It was peaceful, gorgeous, remote and really everything that we needed. At times, I had to pinch myself that we were actually still in the UK. The unfriendly sound of the tube rattling by in the morning was replaced with being awakened by the sound of the lambs outside the door. Larry the lamb from the Isle of Harris is definitely one of the best looking lambs in the world hence why the Harris Tweed comes from there. There are also some of the most beautiful beaches and when the sun shone you could have believed you were in the Caribbean. My woolly hat gives it away that even although the sun was out it was still pretty cold but it didn’t matter we had an amazing time. As one friend told us there is no such thing as bad weather only the wrong clothing and the bikini was definitely not needed for this holiday. We also spent time in Scotland catching up with a lot of the family and Dave was fortunate to play in the first Brian Oates memorial golf day to raise funds for Crohns and Colitis, which was lots of fun.

Since the return from Scotland summer has arrived in the UK. I started this blog to raise awareness of melanoma through telling my story. May was melanoma awareness month and more still needs to be done to get the message through to the public to protect their skin, check their moles regularly and slap on the sunscreen in all weathers to prevent skin damage. If you want a tan faking it is a far better option than getting baked. For more information on skin safety please refer to Melanoma UK http://www.melanomauk.org.uk/about_melanoma/faqs/

As I approach my 2 year cancerversary on June 15, I continue to be hugely grateful to the medical team at Marsden HQ led by Dr Larkin, CNS Nikki Hunter and all of their teams who continue to look after me so well and are keeping me on this planet, plus my wonderful hubbie David, friends and family who keep me smiling, enjoying every day to the max and are there to pick me up when I am feeling down. Cancer, I have learned is as much of a mental as physical disease.

If you would like to support Team Shomelanoma fundraising organise a curry eve, bake sale, pub quiz or sign up for your own challenge to support then let me know and we can help organise it.

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

More to come soon on the Jurassic Coast 100 KM plus the gorgeous Kirsteen Higgins adventure swimming Loch Lomond coming up in August.

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

https://www.justgiving.com/fundraising/kirsteen-higgins4

Watch this space for more to come from Team Shomelanoma

 

Happy Days and One Year On with Stage 4 Melanoma

The Melanoma rollercoaster is currently on a smiling high after good scan results showing further shrinkage to my brain tumour and the body scan remains clear. Over the last couple of weeks, I started to feel the numbness in the left upper side of my mouth was becoming more noticeable and my immediate concern was this must indicate that the tumour was growing. However, my doctor explained that this could be due to nerve damage or inflammation and of course your mind can plays tricks with you as we saw in the run up to the last scans. Today I am also reflecting that it is exactly one year to the day that I started my immunotherapy treatment following on from my stage 4 melanoma diagnosis, and  am feeling blessed to still be here. It also represents one year with no alcohol (albeit I am tempted for a glass of bubbly today!!) plus feeling grateful for the support from my rockstar husband, family and friends and of course the amazing care from Dr. Larkin, Nikki, Lewis and the wonderful team at the best hospital – Marsden HQ.

IMG_5308

March has been an amazing month for Team Shomelanoma and we recently reached our heady fundraising target of £20,000 for melanoma research at the Royal Marsden. Back in June during my 3 weeks staycation at Marsden HQ when we set up the fundraising I didn’t begin to think we would reach the target in 9 months. A HUGE thank you to everyone who has danced, run, walked, laughed, donated and supported, it is massively appreciated and there is much more to come.

I presented Dr. Larkin with the obligatory cheque today and he was absolutely delighted with all the fundraising efforts and asked that his thanks be extended to you all. There are several important melanoma research projects being undertaken by Dr Larkin and his team that require funding; I will be learning more about these projects and will share more about these on the next blog.

6680CA92-54D1-4D52-AC40-58184760FD57

The Beast from the East may have been in town but this didn’t stop Team Shomelanoma getting wrapped up for the Marsden March on Sunday March 4. Unfortunately, although my heart wanted to be on the walk, my head told me that due to the latest fever it wasn’t a good idea. To say I was gutted was an understatement as David trotted off to meet the rest of the team. They had a fun day and well done to the Hines and Hawkins kids who all walked 14 miles with big smiles on their faces and didn’t miss their iphones once. I loved all the messages on their backs brought a wee tear to my eye.  The team raised over £2,000 from the walk (these funds are in addition to the Shomelanoma funds), which will be allocated specifically to improving the care provided to patients and their families at the Royal Marsden hospitals.

 

From the Marsden March to the Danceathon a week later it was time to get the 80’s gear on and the pink legwarmers out. There was no way I was going to be missing this one due to pesky fevers, especially as I had a special guest Natasha Watts flying all the way from Hong Kong and 12 hours of cool tunes to dance our way through with all of the girl squad. It was such an amazing day and so much fun. It was one of those days that everything just came together and it not only fulfilled the goal of raising lots of funds, there were also smiles on the faces of all the kids (& parents!) as they were entertained by the fabulous Jonny Awsum to the dancers who bopped until they dropped for 12 hours. Who needs Ibiza when club classics were pumping their way through Kings Cross?

 

There are massive thank yous to the wonderful Emma Williams and her fantastic team at Green and Fortune for generously donating the danceathon venue, my gorgeous sister- in-law Katy for coming up with the idea and helping organise the event and her husband Sam who designed the website and organised music and DJs plus Jonny Awsum and Matt Edwards for all their entertainment plus all the sponsors who donated raffle prizes – Gibson Girl, The Training Works, Womens Chapter, World of Craig, By Sarah and Seedlip Drinks.

After all the fundraising excitement David and I escaped for a weekend of R and R to the beautiful Southwold on the Suffolk coast. Spring was in the air as we walked along the stunning beach, around the harbour and sat outside for a pub lunch. It didn’t last long however as the Beast from the East mark 2 blew in and on Saturday evening I was in bed with the woolly hat, red nose on alert and with eyes shut feeling as cold as I had on summit night of Kilimanjaro. Watching the Everest film was probably not the best idea to help matters but it did give me a taste for going to basecamp …

DB64CE12-6662-44FE-9F3A-769FA53928B9

Back in London it was lovely to attend the WellChild Awards launch and catch up with all the team there. I was also able to get the pink bomb suit as David named it out of the wardrobe (it hadn’t been in there for long) for the glamorous night out.

We are now planning the next holiday to sunny Scotland and are off to the Outer Hebrides. I am so excited to visit Skye, Harris and Lewis and get the climbing boots back on. And to get training for the upcoming 100km walk. Lets hope the sun shines and the fevers stay at bay we are a long way from Marsden HQ although only a phone call away.

Coming up over the next few months for Team Shomelanoma :

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

My gorgeous friend Melissa Tarver is taking on one of the toughest amateur cycling challenges on April 29 – the 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

Team Shomelanoma (nine of us) are signed up to do the 100km walk on the Jurassic Coast on July 21 and 22. Training walks are about to begin BUT its not too late to join us

https://www.jurassiccoastchallenge.com/

Another gorgeous friend Kirsteen Higgins is undertaking a crazy challenge and will be swimming Loch Lomond in August. Most of you will know swimming in Scotland is more associated with the Arctic than the Mediterranean so this is one mean challenge where the bikini is not required.

If you would like to organise a curry eve, bake sale, pub quiz or sign up for your own challenge to support the shomelanoma team fundraising let me know and we can help organise it.

As you all know I started my blog to raise melanoma awareness and May is Melanoma awareness month so Iook out for a BIG awareness drive coming your way soon.

Thanks again for all your support, messages and keeping me smiling and having fun, more to come soon XX.

 

 

ANXIETY kicks in on the Melanoma Rollercoaster

Much as the Scottish rugby team is having a rollercoaster start to this year’s Six Nations championship, I seem to be having a similar experience with my melanoma. After the drama of New Year trips to A and E, I settled back into Jan life in London. We had a January “let’s get the finances in order” trip from the financial advisor to discuss consolidating pensions. I have to admit that as I sat on the sofa and listened about different options and how much money a year we wanted in retirement, I couldn’t help thinking how the immediate priority was funding my staying alive, fashion, going out and holiday fund for the next 3 months far less worrying about 20 years time given my current situation

IMG_0297

The side effects of the latest drugs calmed down and there haven’t been anymore fevers. However a couple of weeks ago as I was heading into Marsden HQ for a check up with the Dermatologist I noticed red patches had started appearing at the bottom of my legs. These were checked out and steroid cream prescribed to deal with them. A few days later whilst doing a downward dog in my yoga class I felt my ankle sore and a bit swollen. I contacted Marsden HQ to let them know and was informed to stop taking the drugs immediately and come in for an ECG (a test to check out your heart function) as swelling in the legs is again a side effect of the drugs and can be an early sign of associated heart issues.

The ECG ultrasound was an interesting experience with a male nurse who had definitely got out of bed the wrong side that morning and me decked out in my hospital gown with my chest covered in some lovely jelly substance (not the eating variety). I have got to the point now where these things just don’t bother me but I did think if I was being photographed now it would make for amusing viewing. I got the results later that day and was relieved to learn that my heart was functioning normally but was told not to go back on the drugs until the swelling had gone down.

The last month has also brought home how difficult it is to plan ahead when living as a stage 4 cancer patient. We had been due to travel to Yorkshire for a family weekend but after enjoying the opening night at our friend, Tony’s, latest venture – Small Beer in Crouch End – which was cut short due to me experiencing a dizzy spell, we took the decision to cancel that and stay at home for a relaxing weekend instead. Two weeks prior to this we had been due to go ski-ing with good friends in Morzine but after the A and E trip at New Year, the thought of being stuck in a ski resort needing to get to the closest hospital in Grenoble was not attractive so again we decided to cancel it. I hated having to do this but the reality is planning and paying for holidays months in advance just doesn’t make any sense, it is now scan by scan and book at the last minute. I won’t even enter the minefield of travel insurance given my current situation.

IMG_5083

As I approached my upcoming scans to see if the Dab/Tram was working I started to feel a bit concerned. Firstly my mouth was still experiencing some numbness on the left side and I had started to notice some twinges around my abdomen just below my ribs and these seemed to becoming more frequent. This was making me very anxious and I have to admit the run up to these scans has been the worst yet. I tried to stay calm and took myself off to meet up with my gorgeous friend Jen for lunch and a day in town. We had fun catching up on gossip and treated ourselves to a bit of retail therapy which took my mind off things for a while plus a new dress and funky boots were purchased to wear for David’s birthday dinner.

 

I had got to the stage whereby I had self-diagnosed and convinced myself of the likely next treatment … “Gamma knife and more immunotherapy” I advised David. In his calm and more rational approach, David responded “Let’s await the results of the scans rather than hypothesize on your self-diagnosis.”

When scan day arrived last Thursday I was back to feeling anxious and it was not helped as it took 6 goes for the nurses to get me canulated for the CT and MRI scan. The cannula is used to inject the radioactive dye contrast that is used to show up any cancer on the scan. Once the scans were done there was a long weekend of waiting for results. Yoga, walks across Wimbledon common, watching Scotland playing rugby helped me stay occupied (watching Scotland at any sport is always stressful) fortunately they played well against France and it was a brilliant game. I didn’t ‘sleep on Sunday night tossing and turning all night and woke up feeling exhausted and nervous on Monday morning. I had convinced myself the latest drug treatment was not working and my mind was in overdrive. Arriving at Marsden HQ fortunately I didn’t have long to wait to get into see the doctor.

I almost passed out with delight and relief when I was told the scan results were good and my brain tumour had reduced by approximately 50% plus my body remained clear.

As I have mentioned in previous blog posts I usually have a pretty good gut reaction on these meetings but I was totally wrong on this occasion. David and I left Marsden HQ with a big smile on our faces and headed to the favourite Ivy Café Chelsea to celebrate with a gorgeous breakfast. I know I have not been the easiest to live with over the past few days so a HUGE thank you to my rock star husband David and best friends Liz and Jen who help get me through the build up to these scans. Jen sent me a gorgeous card on Friday and this made me smile when I was not feeling the best.

IMG_0460

Fingers crossed that these drugs continue to be effective and in the meantime I continue to owe a HUGE thank you to the wonderful medical team at Marsden HQ who are currently keeping me on this planet and enjoying life to the full.

Danceathon - Instagram

The upcoming Shomelanoma Danceathon is now just over 3 weeks away to raise money for the melanoma team at Marsden HQ. There is a fantastic fun-filled day planned with non-stop dance classics. The venue is the glamorous Rotunda, Kings Place, Kings Cross, London and the music will be pumping for 12 hours to keep us entertained. Jonny Awsum who many of you will remember from the comedy night will be taking to the mike for the kid’s hour and we have international DJs spinning the music. We would love you to join the fun, full details and tickets available here bit.ly/2ESnNLc .  You can also  support the team dancing for 12 hours

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

Before that, we have a team doing the Marsden March on Sunday 4th March, which is full but you can join us on the Jurassic Coast Walk on 22/23 July, full details available here.

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

Another gorgeous friend Kirsteen Higgins is undertaking a crazy challenge and will be swimming Loch Lomond in August. Most of you will know swimming in Scotland is more associated with the Arctic than the Mediterranean so this is one mean challenge.

If you would like to organise a curry eve, bake sale, pub quiz or sign up for your own challenge to support the shomelanoma team fundraising let me know and we can help organise it.

Now we are looking forward to celebrating David’s 45th birthday this weekend, stay tuned for more adventures on the shomelanoma rollercoaster.

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.

IMG_5020

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.

IMG_0220

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.

E198EDBF-31B4-4F61-B6B0-DD567B7CA019

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.

IMG_0271

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.

24529F7D-B9E2-4E30-920E-710BFF3D1452

 

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.

dance-banner-ticket

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.

Shiona 1

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.

IMG_4942

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.

pexels-photo-374101

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!

IMG_0202

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.

IMG_0142

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.

IMG_0160

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.

IMG_0146

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.

IMG_0145

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

IMG_4787

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

iStock-613525344

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!)

IMG_0071-2

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.

EACF698B-0915-49F6-9F90-6DC5C1ACF541-2

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

IMG_4739

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.

IMG_0115

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.

iStock-613525344

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