The morning of April 10 dawned and I was ready to start immunotherapy treatment at the Royal Marsden Hospital. I had managed to work myself into stressed state, thinking about the laundry list of potential side effects and how these would impact me especially given I was feeling so good. Arriving at the hospital, I went for blood tests, only to find out that I have small veins, it took 3 nurses and the best part of an hour to actually take my blood. I used to find these situations made me squeamish, but I am now less of a prima donna and take them in my stride.
I had lots of questions for Dr Larkin mostly about the side effects of the treatment and was told that as everyone reacts differently, I should stop worrying about what’s happening to other patients and that the team can deal effectively with all the side effects as long as they are kept informed of all symptoms if and when they arise.
After signing lengthy consent forms, I was ready to get started on the first of 4 treatments of the combination immunotherapy drugs ipilimumab and nivolumab. I will have the treatments (3 weeks apart) and then a scan at the end of June to assess its effectiveness and decide on next treatment path. Keep everything crossed folks that I respond to these wonder drugs.
Having the treatment itself takes 4½ hours attached to an intravenous drip seated in a comfy lazy boy chair (fortunately you can go to the loo). David sat with me for the 1st treatment but I have found that the time passes much quicker with one of the “girl squad” in tow to chat, gossip and have a laugh, so Jen attended treatment 2 with Liz at treatment 3.
All of the staff at the Royal Marsden are amazing, where you are treated as a VIP and nothing is too much trouble. When my friend Jen accompanied me on treatment day she commented how calm the atmosphere is and how it doesn’t feel that you are in a hospital. This is testament to all the staff from the cleaners, receptionists, nurses to the consultants who treat you as an individual, with lots of care, respect and a big smile. Despite the severity of my current health situation, which obviously I would rather not be in, I feel extremely fortunate to be one of their patients.
We have also got into a routine from treatment 2 and 3, whereby I have my bloods taken the day before the treatment to help speed up the process. David accompanies me to the appointments with Dr Larkin and then we are allowed to pop out for breakfast whilst the pharmacy makes up the immunotherapy drugs. These have to be made up on the day and only after I have been weighed and my blood tests approved by Dr Larkin. The drugs take around 2 hours to make and have to be used within a 24-hour window. The discovery of the Ivy café on the Kings Road 5 mins from the hospital has made the treatment days pass by quicker and we hang out there with the Chelsea wives while the pharmacy makes up the immunotherapy drugs. The people watching, and girly chat all make for top entertainment and you even have to book a table there at 10.30am. We head back there after treatment is finished and celebrate with a virgin mojito before heading home.
I have now completed 3 of my immunotherapy treatments and am feeling really well. Fortunately I have had no significant side effects with the exception of a dry mouth and strange metallic taste which is being dealt with drinking copious amounts of water (where is it all going?), eating water melon and using xylimelts during the night. I have also given up alcohol, which is also helping me feel really well. I have been told I am glowing and my skin feels amazing so maybe there is some truth in what they say about drinking. Apart from a couple of evenings out and listening to the utter garbage people talk at 1am after a few drinks when sober, I have not missed it.
At the outset of the treatment, I feared that the adventurer in me was going to be taking a 12 week break, after the oncologist told me in no particular order there should be no driving, cycling or climbing up ladders with a chain saw. However, there was no mention of rock climbing, so at the first opportunity David and I headed off to the Peak District at Easter and I was soon climbing up mountains, which I love. We have also had wonderful weekends in Whitstable, West Wittering and the South Downs with very special friends and family.
I would also like to say a HUGE thank you for all of the lovely messages of support I have received since publishing the first blog. There is no doubt that I wouldn’t be coping as well without the very special love and support from David, plus family and friends and that means more to me than words can say.
We have also been planning the fundraising for the Royal Marsden and the next blog will follow shortly and reveal more details. May is also Melanoma awareness month and to find out more about how you can prevent this horrible disease that currently kills 6 people in the UK every day please refer to http://www.melanomauk.org.uk/about_melanoma/