How often do I think about Melanoma?

I was  recently asked how often I think about melanoma and sadly I fear it’s all the bloody time! As I’ve said before – it’s not all bad. There are some strange silver-linings that have accompanied my diagnosis so it’s not as though day to day I’m feeling constantly miserable about my situation. I guess, the reality is that for more than half of the last 5+ years since the original diagnosis I’ve been having active treatment and that entails endless hospital appointments which makes it pretty hard not to be reminded of my predicament.

1 year ago yesterday I was having my second dose on my re-challenge of Ipilimumab and Nivolumab. My ‘on that day’ app is full of pictures of very superior chocolates which accompanied this treatment and pictures of my view from my hospital chair.

2 years before I was having what turned out to be my penultimate infusion on the blinded drug trial. The side effects were just beginning to kick in but as is so often the case being on a trial I was downplaying them as I didn’t want to stop receiving treatment. I was a little tired, my stomach was a little bit wild and my appetite, although there, was becoming very selective. By the time the side-effects really kicked in I realised that I was existing on a strange diet that consisted mainly of very salty bacon flavoured crisps, snickers bars and ribena – a little different from the pretty healthy diet I generally follow.

3 years ago I was in the early stages of the blinded trial.

4 years ago I was having my lovely year off from treatment.

5 years ago I was taking part in the Avastin trial at Barts.

Given the fact that hospitals and treatment have featured so heavily in my life and particularly at this time of year I guess it’s hardly surprising that I do think about melanoma a lot. Yesterday, I couldn’t help but feel incredibly grateful for the luck that I’ve had, for the fact that my treatment has mostly been incredibly successful, for the fact that I’m still here.

Yesterday, I went to visit a friend – another melanoma patient – who’s currently recovering at The Marsden having just had very major surgery to remove a large part of her liver. Her melanoma  has been kept safely in check for over 3 years with ipilimumab but what is hopefully simply a ‘rogue’ tumour appeared on her liver in the autumn and the decision was made to remove it. I have always been a little frustrated that despite what I was originally told during my original surgery to remove the melanoma – that you can just keep chopping bits out – ‘a bit like taking the bad bits off a potato’ since the stage IV diagnosis surgery has never been a possibility for me. The combination of having too many tumours on my liver plus all the other ones that were lurking around my liver and porta hepatis meant that surgery wasn’t viable. Well, having seen my lovely friend yesterday whilst being delighted for her that she is once again totally cancer-free this surgery was no walk in the park. She’s doing amazingly – she can’t help herself but blimey she’s been through it. It made me realise that ‘the just cut it out’ mantra really underplays how serious these surgeries are. Also means I’m feeling a little less unlucky that surgery has never been an option for me.

Yesterday was also the funeral of a friend. Another person I’d met through the online melanoma forum and had met in person at last year’s conference in Bristol. When I met her last June she was still in shock after discovering that her cancer had spread. She went on to have what was thought to be successful Ipi treatment and the tumours (again liver) were shrinking. However in January she begun to complain of memory loss. This lead incredibly quickly – a matter of weeks – to the extremely shocking news that she’d died. Whilst I don’t know the full details it seems impossible that this was anything other than the dreaded brain mets. She was just a year older than me. Her children are virtually the same age as my children she was, without doubt, much too young to die. Although I wanted to – I didn’t attend her funeral as it was quite far away and in all honestly I think I’d have disgraced myself by weeping uncontrollably – but I haven’t stopped thinking about her and her family.

So, in answer to the question ‘how often do I think about melanoma?’ my original response was right – all the time. Whilst it doesn’t define me  – it has changed my life totally and so  is a huge part of who I am and whilst it continues to keep harming and killing my friends and giving me quite a fright once in a while I shall continue to keep thinking about it.

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Good news

Happy to report that my latest scan results show that once again, the dastardly tumours remain stable. I had the scan on Monday and was expecting to go and get the results the following Monday but due to the planned tube strike next week I’d emailed my nurse to let her know that I might run late for my appointment. I really didn’t want to receive results over the phone so was hoping to just shift the appointment later in the day but about an hour after I sent the email – my nurse called. Thankfully she quickly told me that the CT report was good but it didn’t stop that horrible rush of fear that came when I realised who the call was from. So, although I didn’t get the results the way I wanted them, I couldn’t be more pleased with them!

Like all scans this one came with it’s own specific set of anxieties. Timing-wise it’s a year since I started my second round of ipi/nivoluamb and so 9 months since my last treatment. Last time round the treatment I had kept everything ticking along for 10 months between finishing treatment and progression so I’m fast approaching that milestone and it’d be a lie to say that that isn’t a worry for me. I guess that each scan I have takes me further away from my last ipi/nivo infusion and so each one will seem a little more scary as my situation will inevitably feel a little more precarious.

However, that’s not today’s worry. Today is a happy day and not only am I hugely relieved that everything is still stable it’s also really lovely not to have the fear hanging over me this weekend as I’d expected. Instead I can continue planning and baking for my pop-up shop next weekend. I can start making some plans for half-term with the boys….. I could possibly even look ahead to Easter as I don’t think I’m due to have another scan until the end of April.

Good news