Four years at stage IV. Four years into being told I had months not years. Four years of blood tests, cannulas, IV treatments and scans. Four years of never making plans beyond the next scan. Four years of bouts of anxiety and fear that my luck might be about to run out. Four years treading water which occasionally feels more like quicksand. Four years into a terminal diagnosis. Four years is still four astonishing years. Four years of birthdays, anniversaries, celebrations and so many milestones – four unbelievably precious years.
I have celebrated more anniversaries with Andy – our 20 years together in 2014 seemed like a bit of a pipe-dream – hence our bucket list trip to New York – and yet now we’re well past 23 together and have even squeezed in a second trip to America and are very much hoping to go again.
I have seen Oscar grow from a little boy of 8 to a delightful nearly 12 year old who’s currently settling into secondary school and who honestly couldn’t make me more proud. He has already turned into such a lovely boy who forever astonishes me with his creativity, his kindness, his humour and the most ridiculously painful cuddles.
Max too has changed so much in the last four years. Back in 2013 he was only 5 and whilst you could see glimmers of how he might turn out – he already gave the best hugs – I had no way of knowing that at 9 he would overwhelm me with his extraordinary drawing, his ridiculous peskiness and humour and his generally excellent company.
I have in the last four years had countless cups of tea, cakes, lunches, drinks, celebrations, commiserations, adventures as well as – as I always say, far more laughter than tears – with my brilliant group of friends. I have talked ceaselessly and boringly about the experience of living with stage IV cancer and they have gone through the highs and lows and amazingly they have stuck by my side and not simply run for the hills.
Claire and my Mum and my Dad have also been forced to ride the clichéd cancer rollercoaster of the last four years with me. Like me, they have dreaded scans, waited nervously for the results and felt the full force of the misery of the bad ones and the joy of the good ones. It saddens me that my diagnosis, my bastard melanoma, didn’t just change my life but hit all those close to me.
Back in 2013, prior to getting my scan results, I had decided that if by some miracle they were ok, I would take a step back from the melanoma support forum I had joined and would attempt to put a little distance between melanoma and me. This was obviously ridiculously wishful thinking and so Facebook’s brilliant melanomamates group is still very much a part of my life. Through it, not only did I become involved with the MPNE, (the European-wide group that’s taught me about patient advocacy) but I have met countless friends who absolutely understand how I feel as we’re all walking the same treacherous road. These friendships are unbelievably valuable and through attending conferences and workshops I have met many of these amazing people in person. They too have supported me through the highs and lows of the last four years.
I have also lost count of the number of friends from the melanomamates group who have died. It would be too painful and self-destructive to fully engage with everyone on the group – apart from anything there are well over 1000 people on it – but there are always some connections, which just resonate, and those losses are always the most painful. In the last 4 years, there are been far too many women, my age, with similar aged children, who have done everything they possibly can, have sought the best hospitals, have gone through the most gruelling of treatments but in the end have died because melanoma is still a vicious killer. The losses don’t stop being heart-breaking and you don’t become immune but they are a reminder of how incredibly precarious my situation is and how every day should be celebrated. The ups and downs of my treatment over the last 4 years has also bought it home – so many amazingly good scans but still the devastating ones when the trial drugs stopped working, or again earlier this year when my second blast of treatment stopped doing it’s magic. Whilst it gets easier to pick myself back up and forge ahead with a new plan and new treatment it also diminishes the options that are left and that cannot be anything other than frightening.
So, whilst I am not a fan of the term cancerversary (some words should never be merged) I shall be acknowledging and celebrating this one as I did last year and the year before and I shall also be making an embarrassing fuss of turning 41 in a few days – as life is very much too short and you have to squeeze the best bits out of it. Whilst I am joyful to currently be well and responding to treatment I know that it can’t last and all I can do is keep on seeking the best treatment, getting the best advice and keeping my fingers very firmly crossed that I carry on being lucky for as long as possible.
The bonus years that I’ve already had do make me feel very much as though I’m living on borrowed time but regardless of how I label it it’s still been four amazing years spent with all those that I love. I shall always want more, I don’t imagine there will ever be a time when dying will actually feel ok (unless I’m ludicrously old and Claire and I are whizzing round being menaces with ear trumpets in wheelchairs). I think I’ll always want to see what’s just around the corner. With my boys that’s especially marked as I’m always going to want to see how they turn out and the changes that have happened in the last four years are only likely to be amplified in the next four. Obviously it’s not just about the boys – I desperately want to grow old with Andy and the thought of not doing so is pretty unbearable and so I guess, as I do with the boys I have to be a little ostrich-like and not think too hard about what the future might hold. Four years of ‘living with cancer’ has certainly taught me to live in the moment and so for now – that’s all I can do. So today I say a very large bugger off cancer and I shall be raising a glass to all those losses but also to how lucky I have been.