8 Years! (8 years living with Stage IV Melanoma)

Timehop memories has once again reminded why September remains so complicated.

After a year of trekking into Barts for 3 weekly infusions, having a nightmare with cannulas and not terribly kind nurses (the two things are intrinsically linked) and eating a lot of celebratory the-cannula-is-finally-in Daim bars with Claire I remember really hoping that I’d done all that was necessary to remain cancer-free. I relaunched my business, I joined a gym (well, a swimming pool) I started to look ahead to the future.

I’d thought my melanoma was caught relatively early it hadn’t been enormously deep, I’d taken the absolute belt and braces approach to treatment with having a sentinel lymph node biopsy, discovering microspread and it being followed up with a full dissection and I’d even pushed for access to a clinical trial in light of lack of treatment options at that time.

To anyone who is newly diagnosed with melanoma now – it sounds as though I’m talking a different language as the landscape has changed so dramatically. Lymph node dissections are far less common as they generally don’t have any prognostic benefit and so are unnecessary and potentially debilitating surgery and there are now a number of really amazing adjuvant treatment options available hopefully preventing so many stage III patients advancing to stage IV. However back in 2011, patients in my situation were probably told – as I was – the cancer has gone, go and get on with life. Thankfully my determination to do whatever I could and my already quite reasonable terror about the cancer re-emerging meant I knew to ask about trials and lo and behold I was told to go and talk to another doctor just down the corridor.

I’ve written before about my experience on the Avastin trial and so won’t go over it again but I do remember finding it tough I also remember the joy of ticking off each of the 17 infusions and desperately looking forward to reaching the end of the trial. Perhaps that’s why my post about treatment being over feels a bit like a punch in the gut each year it pops up. It’s not simply that the trial didn’t work or didn’t work for very long (it’s impossible to be totally sure) – it’s just how radically different everything is now.

Since 24th September 2013 there has been no count down to the end of treatment, no bell to ring on my last session – what I’ve wanted – desperately – is for my treatment to go on and on as it is the treatment that keeps me alive.

When I started on the Enco/Bini in January 2019 I really wanted it to give me at least 6 months, maybe a year and to my amazement I realise I’m on my 33rd month. This is the longest any treatment has so far worked for me. It is utterly terrifying. Each week as I open another box of the pills I now feel very grateful to them for working as well as they have and for so long. As much as I struggled with the handfuls of them I have to take each day I would take ten times that just as long as they keep working. No countdowns to finishing treatment for me.

The version of me who wrote that post – who optimistically hoped the cancer was now behind her – has long gone but this whole living with stage IV thing hasn’t been as horribly short as I’d quite reasonably feared it would be and whilst there won’t be any countdowns I am incredibly grateful to be alive.

So, whilst I really didn’t get my wish about the Avastin ‘doing it’s magic’ I have nonetheless been unbelievably lucky. 8 years at Stage IV – it was an impossible dream that has by some miracle become my reality. Heartbreakingly – one of the comments on that post was from another friend who was undergoing cancer treatment – she died the following year. As I wrote in my last post – this year seems to have seen so much cancer and amongst all those lives and stories I know how lucky I am.

My little boys aren’t little any more – even baby Max is getting amazingly close to overtaking me in height and Oscar towers above me and finds it amusing to pick me up and move me into a different room just because he can. Back in 2013, when I received the devastating diagnosis – I was just approaching my 37th birthday and in a few days I’ll be 45. Andy and I’d hoped I’d be well enough to celebrate 20 years together and next year it’ll be 28 years. We have been extraordinarily lucky. It will never be enough time and I feel as passionately now about taking the belt and braces approach to whatever treatments might lie ahead as I did back then. I will continue to push for whatever I think is best because although 8 years was unthinkable, it has been utterly amazing and I will always want more time.

So, as has become tradition, I shall raise a glass to both absent friends, of which there are far too many, but also to my good fortune, my good health and most importantly all the lovely people who have been holding my hand for the last 8 incredible years.