The dark days are here.

I’ve never been a huge fan of the dark, stories when I was young that depicted monsters hiding in dark places meant that I never let my family sleep without the landing light on and as a teenager I actively avoided watching scary films (apart from that one night where my friends and I all watched Nightmare on Elm Street on quite possibly the darkest night of the year and then got zero sleep afterwards as we were paranoid that the twig scratching at the window was Freddy coming to get us – Bude 9, you KNOW what I am talking about!)

I always get a sense of sadness when the longest day of the year comes around and I know that we are heading towards those dark days again. I think that is one of the reasons that I have always got up so early, to make sure that I was awake for when the daylight started, not wanting to waste any of the glorious light (that and the immense smugness that comes from being an early riser… 😛 )

After my Ocular Melanoma diagnosis, I really struggled at night, my overactive brain imagining the worst and wondering what we would do if the worst news was given to us. Those thoughts were often dulled by falling asleep on the sofa to reruns of Luther or some other crime drama which brought out some really crazy dreams and left me wondering about my choice of late night watching due to my perpetual hatred of the dark.

Now the worst was happening and I feared that the night time doom was going to rear its ugly head again. I was semi prepared for it this time as peri menopause was already robbing me of a good nights sleep by introducing crippling anxiety and restless legs. So strangely as I was adapting to the news of my life limiting diagnosis and thinking about how to break the news to the kids and the awful impact it would bring, I felt strangely calm about the fact that I wasn’t sleeping. Without sounding wanky, I was grateful for every morning that came, every sunrise, every early morning coffee in complete silence. It didn’t stop me feeling grumpy and crazy tired from the lack of sleep but somehow it was different this time around. I was facing the worst of the worst. My family was facing the worst of the worst and there was nothing else that could match it so there was little else to worry about.

The lack of sleep did allow me to think through my options. At this point it was mid July (nearing 2 months since my initial MRI scan which showed the spread of the cancer) we had been given an option that wasn’t an option from Doogie Howser in Leeds and now, after meeting Dr Sacco in Liverpool we had others. The trial that was starting in the Autumn did sound promising and the initial results that had been published from round 1 were positive. However, there was a 2:1 chance that in this blind trial, I wouldn’t receive the trial drug and there was no guarantee that it would begin in the autumn. So it would be at least 4 months from initial diagnosis and possibly longer with the risk of not getting the trial drug.

The other option was Chemosaturation or Delcath as it is known. A surgical procedure where they isolate the liver and saturate it with high doses of Chemo and then flush it out of your body (it is much more complicated than that’s it in simple terms) you have the procedure up to 4 times and the results have been very positive at sending the liver tumours to sleep (again, not the technical term!) for a period of time. This treatment was pioneered by the team in Southampton and currently this is the only place you can have the procedure in the UK (there is the option to go to Europe or the USA but in all of our research – clearly not mine but Mr Me-Myself and Eye’s, the team at Southampton were the Manchester City of Chemosat, no one else even comes close – I am laughing as I write that last reference as I have no idea about football but thought the comparison was relatable!) None of the options would fully stop the inevitable, but Chemosaturation had the best option in slowing it down and giving me more time.

The other HUGE potential block to having this procedure is the cost. As I previously mentioned, Chemosaturation is not currently offered on the NHS and so has to be self funded. I know that there has to be hard decisions by the powers that be about what can and can’t be funded, but when it is literally your life on the line, it makes you question why your life isn’t worth it. It makes an already crappy situation even more stressful, it doesn’t give equity to all and divides society even more. I have friends in my Ocular Melanoma groups that have tried to raise the money for Chemosaturation but haven’t been able to and have died prematurely. IT’S JUST SO UNFAIR. There is also a guilt that comes with being able to access and fund the treatment that I can’t put into words.

I don’t feel that this is the space to talk about how we managed to get the funding together for the Chemosaturation, but I do want to say a huge thank you to everyone who offered their hard earned money and offers of fundraising (as long as it didn’t include running a marathon!) I am overwhelmed and truly grateful to my whole community ❤️ your love and support has not gone noticed, I just sometimes struggle in getting my words of gratitude across.

So on the 5th August 2024, I checked into Southampton Spire Hospital ready to meet the team and get my first round of Chemosaturation underway. Nearly 3 months of stress and sleepless nights trying to work out what to do but also optimistic about the dark nights drawing in as we headed towards winter.

Hx