Back to Earth with a Bump – Staying Alive

The new year brought with it a flurry of new year resolutions, dry January, Veganuary and reigning it in after the excesses of Xmas but I threw all that out of the window and as the BeeGees used to sing, for me its all about “Staying Alive”. After the amazing holiday to Argentina and Chile and a lovely family Xmas January arrived with a large dose of landing back to reality with a bump and it wasn’t long into the new year that anxiety was back knocking at the door.

We had escaped up north for a few days early in the month to Manchester to see David’s Mum and had a relaxing few days there. I was becoming conscious of abdominal pains rearing their ugly head and tried to put them to the back of my head. As every cancer patient knows with any strange pain you immediately assume is related to the cancer and thoughts of it invading everywhere occupies your mind. As I had scans coming up the following week I didn’t inform Marsden HQ and I was also conscious that I’ve been wrong about abdominal pains before. It was also worrying me that the targeted treatment that I am currently taking is effective for 10 to 12 months on average and I am now 14 months into the treatment. My Oncologist has reminded me that it is an average and for some patients it works for much longer, some patients are now up to 5 years.

Back in London and in anxiety mode in the run up to the scans, we had an escape day to West Wittering, one of my favourite places and the fresh air, views of the sea and a good walk along the beach helped ease the worry in my head. By the next day when it was time to be stuck in the MRI scanner for my brain scan I felt slightly calmer. The brain scan is particularly unpleasant as you have a mask over your head and you are confined in a long donut tube for 25 mins whilst the scanner sounds like roadworks on the M1. The radiography staff at the Marsden are excellent in making you as comfortable as possible and you do have a panic button should anything happen or if you need to get out at any point. I have never had to use this but if you are in any way claustrophobic the MRI brain scan is a scary, unpleasant but necessary experience. The CT scan on the other hand is quick, not claustrophobic and with the exception of the radioactive dye which is injected to help identify any cancer cells (and makes you feel as if you are about to wet yourself!).

I tried to forget about the scans over the weekend and the looming results on Monday but there is no doubt I felt extremely anxious and it is huge thanks to Dave for keeping me as calm as possible which was not easy. Even the pilates and yoga wasn’t doing much good this time. Monday morning arrived soon enough with the churning stomach so it was actually a surprise to hear Professor Larkin telling me that my scans were all good. I felt as if I was having an outerbody experience that had shot me out of one of those cannons and I had just landed back to earth with a huge bump. When I explained to him I was so convinced that the melanoma was invading all areas of my body he said to me “well our Radiographers don’t agree with you Shiona“ and you are doing really well.   I was also told that if the abdominal pains continued by the end of the week to let them know and they would refer me to a specialist. By the end of that week the abdominal pains had gone and I was feeling well again.

So it was time to start planning the 2019 challenges and adventures and just over a week after receiving the good scan results I felt very lucky to be flying off to France for a last minute, long weekend skiing with Dave, my good friend Jen her sister Jill and Dad Norrie (Noz) who have all been such a massive support to us since I was diagnosed with melanoma.

For the last couple of years having booked ski trips we have had to cancel them at short notice due to lymph node surgery 2 years ago and last year having just started the latest drug regime and experiencing fevers, we cancelled again. We booked flights and headed off to Les Carroz in France which is an hour from Geneva and had an amazing fun long weekend skiing, eating lots of lovely food, having a laugh. I managed to stay upright for all of the time except at one point when Dave who is usually at the back of the group as he is a good skier ready to pick anyone up who falls over was at the front and I fell over. Jen and Jill were trying to help me up and two lovely Frenchmen one of whom just stopped and pulled me up eventually aided us. Fortunately that was the extent of any skiing drama plus I forgot about melanoma as I was too busy concentrating on staying upright. Look out for us on Ski Sunday !

This week on World Cancer Day on Feb 4, I was invited by the Royal Marsden Cancer Charity to share my patient story at the law firm Macfarlanes who are doing wonderful work by partnering with the charity and raising funds for Professor Larkin and Dr Samra Turajlic’s cancer immunotherapy research project. Members of the charity and Dr Lewis Au, who is a Clinical Research Fellow and lead researcher on the project, joined me. It was a hugely enjoyable experience and around 70 of the staff came along to listen to the talks and were very engaged asking lots of questions about immunotherapy and how it is changing the way cancer treatment is approached. By sharing my experience I was able to bring the project to life from the patient experience.

We have also been invited to visit Dr Lewis Au at the Crick Institute, which is where the immunotherapy research is taking place, and have a tour that I am hugely excited about and will report in the next blog, which will also include a more detailed update on the Immunotherapy research.

We are now planning the next set of challenges for the Shomelanoma fundraising and it looks likely that a team of us will be undertaking The Welsh 3000’s during the summer. This is taking place weekend of July 19- 21 and involves scaling the 15 peaks over 3000 feet in one weekend. It looks a tough one so will provide plenty of focus for us all getting fit. You know we love a few mountains to climb. If you would like to join us please let me know we are just confirming all of the details.

Dave is also recruiting the Shomelanoma team to take part in the Royal Parks Half Marathon, which is on Oct 13, 2019. There are already several runners signed up to join as he attempts the under 2 hour challenge. If you are interested to join the team please let us know.

There will be more social events to come too so watch this space in the coming months and if you would like to undertake your own fundraising event from a bake sale to a curry eve just get in touch and we can help support you.

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

January has been a sad month in the melanoma online support group I am a member of and we have lost more young lives to this deadly disease and others who have suffered further progression with the disease, which only reinforces how much more still needs to be done to find a cure for this nasty disease.