Living with Stage IV Metastatic Melanoma
You’d think after all this time I might just let the anniversary of my stage IV diagnosis slip by – after all I’ve made it far beyond the ‘months not years’ of my original prognosis. It might appear a little unseemly to be dwelling on something so grim year after year and yet as the 24th of September approaches I remain astonished that I am still here and it’s important to me that I acknowledge how amazing it is and how lucky I have been.
Unless you (or someone you are very close to) have found yourself sitting in a doctor’s office being told that you are dying it is very hard to comprehend how difficult it is to just simply accept that you have been lucky and move on. My experience of being on a melanoma forum in the run up to my diagnosis was that time and time again people diagnosed stage IV mostly died within a year. Plus – my ‘luck’ has always been combined with a great deal of proactivity regarding my care and a phenomenal support network that have helped me through the troubles of living with stage IV cancer.
So really, there is no moving on – I still have Stage IV cancer, none of the various treatments I have had have got rid of my tumours and nothing has worked for more than a couple of years and so there have been many more ‘bad scans’, difficult decisions, sleepless nights and too much contemplation of my mortality.
However, today it has been 7 years since that truly horrible day and that is astonishing.
My boys were 5 and 7 back in 2013 and now they’re 12 and 14. This last 7 years have allowed me to experience so much more of their lives than I had dared to dream and my boys have astounded me with their uncomplaining resilience, their humour, their creativity and probably most of all their extraordinary love.
I have seen so many milestones – so many ‘impossible’ birthdays, them hitting double figures, finishing primary school, starting secondary school, Oscar reaching his teens and now looking down at me as he rapidly heads towards 6 foot. I have a real sense of who they both are as the years have revealed Max’s extraordinary creative talents in both art and music and Oscar’s less accessible (as I’m far too old to understand) but nonetheless great accomplishments with film-making and streaming for his youtube channel. They really are proving to be very lovely boys who I am just so pleased to have really got to know.
Whilst mindfulness has never really been for me – I have become very adept at taking stock in the moment and just feeling unbelievably grateful for those simple happy moments that my family give me. It’s often the basic stuff – sitting enjoying a meal together, cuddled up watching a film or – more fancy – the unadulterated giddiness of my boys when we arrived at our beautiful villa in Lefkas.
Whilst metastatic melanoma is a shit hand to be dealt it has taught me to savour the moment and there have been so many amazing moments since 2013. When I signed up to the sinisterly named Checkmate 067 trial my hope was that it would give me a little longer – I had no idea that it would give me a couple of years and the same drugs would then give me another couple of years and that time would then allow for development of other drugs which are now working their magic for me.
I started on the targeted therapy Encorafenib and Binimetinib back in January 2019 and I’ve just started my 22nd monthly cycle – this is the longest I’ve been on continuous active treatment since my diagnosis which is a rather odd record but one that comes as a massive relief. There is still no plan b for what I do next so it would be impossible to put the fear of cancer aside and just get on with life but 7 years is enough time to learn to live very happily (most of the time) with that degree of uncertainty . There are elements of it that still feel exhausting – the anxiety cycle that comes with scans, the need to reiterate the fact that I continue to live on borrowed time – but generally I have got my head around my reality.
I have developed a number of ways of coping and to my amazement exercise has been key – and this whole period of shielding, lockdown and this weird in-between has been hugely helped by throwing my kettlebell around (under instruction) and in the last few months lots of running. I committed myself to running 26 miles in 26 days for The Royal Marsden – although due to being away I started late so only had 17 days but I’ve really enjoyed the discipline of running most days and whilst my challenge would be a doddle for many people it isn’t for me and I’ve taken great satisfaction in slowly clocking up the miles.
I hit the 26.2 miles at the beginning of the week and will continue until the 26th just to see how far I can cover in my somewhat random 17 days. I’m currently up to 34 miles do hoping to hit 40 by the deadline. Cancer has taken so much away from me and clearly shown how little control I have but exercise provides me with a semblance of control and feeling fit and strong when you’re constantly aware of the resident tumours has proven to be really important. Plus I am always pleased to be able to give a little back to The Royal Marsden as it has ended up doing so much for me.
Key to learning to live with stage IV melanoma has been the amazingly supportive network I have around me. My family, who have lived this thing every step of the way, have been amazing despite how hard the ups and downs have been. I will always hate that this awful diagnosis happened and that it didn’t just shatter my imagined life but it disrupted all those around me but especially for my family. I always tend to focus on the boys as I guess they are who I feel most responsible for but I know that that awful day in september 2013 also changed the course of the lives of all my family.
My friends, regardless of their own busy and complicated lives, have learnt to follow my lead in terms of boosts when I get down and celebrations when things are good. Most importantly they’ve let me talk and they’ve listened to where I’m at in my messy head. I have learnt to see that everyone deals with this crap differently and I now recognise that some people are amazing at remembering the key dates, appointments, scans, anniversaries and some are wonderful at just surprising me with beautiful flowers, thoughtful surprises, lovely food, a well timed cuppa and all of them have shown me in their different ways that they care. Slowly, slowly, over time I am learning to accept that my having cancer doesn’t simply make me a burden or an inconvenience but that as with my family, the diagnosis hit my friends very hard too. Despite how annoying I can be – they seem to like me!
So, 7 years! Usually I really struggle with September and despite so many coping mechanisms I get hit by terrible gloom – grief for the life I didn’t get. This year has felt different. I’m not sure if it’s down to being on holiday for the first week, the fact that I had my ‘September’ scan in August this year so got to go into the month knowing I’m currently fine or that the sun just keeps shining but actually I think that it’s probably down to the massive uncertainty caused by the pandemic. It simply doesn’t feel appropriate, even subconsciously, to be wallowing in the what ifs when Covid has shaken everything up and created a dreadful universal panorama of uncertainty. Life for everyone is proving to be very difficult, we all watch the news with dread, worry about the future both in terms of controlling the virus and managing the economy, await further announcements about what we can and can’t do, become enraged by the poor handling of the situation and generally miss our old lives.
Within the current covid context – 7 years at stage IV just feels like less of a headfuck and more a happy miracle this year and years of living with stage IV cancer has taught me to absolutely relish the good moments, make the very best of what you have, never plan ahead and just live each day as it comes and really right now – that’s more than enough. I shall be 44 in a couple of days time and that’s a really splendid number, a ridiculous milestone for someone who was just about to turn 37 when they were told they only had months. So, whilst I am so sorry that life is really rather universally shit I shall be celebrating my good fortune – the fact that I have exceeded my grim prognosis by such al long time and that that time has given me so many wonderful and precious moment with all my nearest and dearest.
No pressure – but here’s a link to my Just Giving page for anyone who’d like to a make donation.