It was manic Monday at Wimbledon for more than just the epic five set match, which saw Rafa Nadal exit the tournament. As all of Wimbledon was buzzing with the excitement, I was in a mad panic worrying about going to the Marsden to get my scan results and see if the ipi/nivo immunotherapy treatment was working for me. As fellow cancer patients will know the anxiety surrounding scans and results is something that you have to learn to deal with in your own way, it’s not easy and very stressful. The words of advice given to me by Dr Wood, after my first set of scans stuck with me. He told me you have to find your coping mechanism and then get on with your life. Personally, I find keeping myself as distracted and occupied as possible between the scans and results works well plus I am a big fan of yoga and that helps me relax.
To bring you up to speed, I was finally discharged from the Marsden on July 4 after 3 weeks in hospital. This was after a 5-day mega pulse on high steroid dose that made me feel I was bouncing off the walls. (As someone who already has a lot of energy this wasn’t a good experience) In fact, on the Saturday evening, I had so much energy I was tempted to go and dance it off in Brixton at the Ministry of Sound but didn’t think that would go down so well with the nurses (or David!). The good news was that this finally saw my liver ALT levels come down far enough that I was able to be discharged which as you can imagine I was over the moon. Dave and I left the hospital with a suitcase load of drugs to take home as I had been transferred from taking the drugs intravenously to orally. I was warned that my body would take some time to adjust and if the levels increased I would need to be readmitted. I also had to come to the hospital every morning to have my bloods checked. None of that mattered though as I was so excited to get home and sleep in my own bed and felt on cloud 9.
It was really blissful to be back at home and have some normality back in my life. Even walking to the gym on my own and doing a workout felt so good. I was also excited to go to watch Wimbledon the day after I got home which was a special treat and catch up with family and friends. On Friday my gorgeous girlfriends “the girl squad” had planned a pre-birthday lunch for me and this was an amazing afternoon. At one point, I seriously thought I’d be going from the hospital heels on tottering out of the Marsden.
Friday morning was stressful as I had my scans first both brain MRI and body CT then bloods done before rushing home to get set for the birthday lunch. I didn’t tell anyone about the scans, as I just wanted to enjoy the afternoon and weekend and also have time for David and I to process the results once we received them on Monday. Friday afternoon was such a happy occasion, my two very special friends Liz and Jen plus 10 other girls pulled out all the stops, the venue, company, food, drinks, laughter, presents, games and fun were just the tonic I needed. This was me sober although don’t forget the steroids! It was such a special afternoon that I will always remember, for the 7 hours over lunch we had a blast with some of the lovely friends and family that have helped support me through the last 12 months. I was very spoiled and it was a gorgeous. Huge thank you to all of you who came it is massively appreciated.
The weekend was also lovely seeing family then friends who were over from Hong Kong where David and I used to live.
Monday morning arrived all too quickly and I was feeling panicked at the prospect of getting my scan results. Normally when going for scan results I have a gut instinct of how things are going to go. I sometimes find that it is easier to prepare yourself for the worst and then anything better is a bonus. This week I didn’t have a gut instinct how it was going to go and when I woke up I felt calm. This didn’t last though and on arrival at the hospital my mind was all over the place imagining all sorts of scenarios. Luckily David was there to keep me calm.
It was soon time for my appointment and walking into the room I felt sick. I sat down and my doctor was smiling and said your scan results are good with no evidence of any new melanoma spread and the tumour in the brain has also shrunk; this means that the immunotherapy treatment has worked and my immune system has been taught to recognise and fight the cancerous cells. The best way to describe it is that the immunotherapy has stopped / halted the melanoma in its tracks. For some patients this can be a long-term status whereas for others the cancerous cells find a way of again overcoming the immune system, hence the need for regular monitoring/scans. There is no doubt this is the best news we could have hoped for and I felt a wave of euphoria come over me and felt so happy. This is the best birthday present I could have and I am currently on a high on the shomelanoma rollercoaster.
I want to say a HUGE thank you to all the melanoma medical team, nurses, catering and cleaning team at both Granard House 2 and the Marcus Ward at the Royal Marsden who have looked after me so amazingly well. I feel hugely fortunate to be cared for at this very special hospital.
I started writing my blog to help raise awareness of melanoma where prevention is the only cure. The current immunotherapy treatment I have received is cutting edge and the team at the Royal Marsden led by my Oncologist is at the forefront of this treatment. More however needs to be done to understand why some patients respond to immunotherapy and why some don’t and also to treat the serious adverse effects from the treatment. Unfortunately there currently remains no known cure.
We have started the shomelanoma fundraising initiative to raise funds to help with the Royal Marsden future research and development of effective treatment for patients with melanoma. All funds will be allocated to the research and development fund administered by my oncologist Dr James Larkin – see attached link:
More will come on the next blog about the shomelanoma fundraising and this has kicked off with this month’s fundraising challenge my husband David’s additional 10O day no drinking challenge, i.e. 200 days in total!!