When I checked into the Royal Marsden HQ on June 13, I didn’t for one minute expect to still be here over 2 weeks later and facing my 3rd weekend here; I don’t think my medical team did either. However, as I was told every patient is unique and my liver enzyme levels have stubbornly refused to fall far enough so the steroid dosage has been increased. (Will I soon look and feel like the incredible hulk?) The reactivation of my immune system has been described as akin to slamming your foot down on an accelerator pedal … i.e. difficult to control, as there is no on/off switch. So here I am still in residence at the Marsden 16 nights now and counting and it’s becoming VERY frustrating to say the least.
Over the last week, I realised I underestimated the adverse affects that can result from the immunotherapy treatment. When my doctor told me at the onset of the treatment I needed to stay in London over the 12 weeks, it was now clear why this was the case. My patience has been tested to the max, however I am now in the daily routine of being awoken early each morning to have my bloods taken and then have the morning treatment intravenously. I was fitted with a PICC line last Wednesday (a tube inside a vein just above the right elbow which feeds round to the main veins my chest) as they were struggling to administer the treatment through a cannula in my arm – my small veins could only take so much and my right arm looks like that of a drug addict (allegedly) covered in bruises. I am then free from around lunchtime and return to the hospital in the evening around 9pm for the next treatment and to sleep.
Residing in Chelsea has not turned me into a Sloane (there was some concern from my cousin north of the border that this may be the case), but I have been enjoying the delights that Chelsea and Kensington have to offer. Whilst the hospital food is ok, I have been out and about enjoying the local dining scene and have been eating pretty well at the local restaurants from oysters to sushi, tapas and fish its all been tasted over the last couple of weeks. As we live relatively close by to the hospital, I have also gone home for a couple of afternoons, which has been blissful. It’s amazing how the simple things like showering at home feel so good when you haven’t been able to do them for a while.
Special friends and family have continued to keep me entertained coming to visit, take me out for the day and keep me well distracted and for that I feel very blessed. A visit from a good friend Susan from Ireland and all my lovely HK girls was lovely and just the tonic I needed after a very frustrating week. We had a gorgeous tapas lunch, spent the afternoon in Hyde Park on deck chairs and finished off the evening sampling mocktails in the Ivy Café.
I also sneaked off for a pamper afternoon with my favourite hairdresser Craig and this was a welcome relief to have complete distraction and relax for a couple of hours. I thought this may need to be cancelled but fortunately doctor visits were moved to the next day and I had control of my life back for the afternoon. As you know girls there is nothing like a trip to the hairdresser to make you look and feel good.
The lack of control over your life is one of the hardest things to deal with as a cancer patient and I have really felt my life is completely out of my control this past 2 weeks. You have to live day by day and also keep your expectations in check. I have found this challenging especially when it looked like my liver (alt) levels were starting to fall only for the next day’s results to show they had stalled or slightly increased. When I have felt disappointed, David, lovely friends or funny messages have helped to keep me going with a big smile.
The medical team at the Marsden have also been amazing explaining everything to me, visiting me daily and I have also had fun and laughter with the nurses on the ward. They have all looked after me like a VIP for which I am hugely grateful.
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 a future blog about the shomelanoma fundraising but to kick things of his month’s fundraising challenge is David’s additional 10O day no drinking challenge, i.e. 200 days in total!!