I honestly cannot believe that I am getting to write this post – 5 years was not even something I dared dream about on this day in 2013. Stage IV melanoma patients were lucky to get months and the really lucky ones might survive for a year or two.
Considering how long it’s been I still remember so much about that day.
I remember my oyster card refusing to work meaning I needed to buy a ticket which I feared was a bad omen.
I remember sitting in the waiting room with Claire and Andy and that as hard as we tried we kept running out of anything that resembled conversation.
I remember that the last tiny thread of hope disappearing the moment I saw my oncologist’s face.
I remember being surprised at my ability to ask questions about possible treatments and what to expect.
I remember my doctor being unnecessarily defensive when Andy pointed out that my year’s treatment on the Avastin trial hadn’t worked.
I remember, at Claire’s insistence, being shown a scan of my poor tumour-ridden liver (I was too shell-shocked to actually comprehend what I was seeing).
I remember being sent through to another room with the ‘bad-news’ nurse. I remember Claire and I both almost laughing at the horror of it as we’d seen and commented on so many other patients being sent to see the ‘bad news’ nurse.
I remember the three of us politely listening to the suggestions about palliative care and what support there would be for the boys whilst really just wanting to get out of the hospital. I’m pretty sure we said yes to cups of tea as it felt like the right thing to do.
I remember standing outside the hospital on a suitably dreary grey day and calling my parents to tell them that it was as bad as we’d feared.
I remember composing a text to send to my nearest and dearest to let them know that the news wasn’t good.
I’m sure there are some bits that I’ve forgotten but so much of it is still crystal clear in my mind and it takes very little, particularly during September, to get flashes of that awful feeling that your absolute fear, your nightmare is actually your reality.
I have often written in this blog about what came next, the combination of knowledge, amazing support and a massive dose of good fortune that mean that I’m still here today so I won’t go through that again beyond saying I know how lucky I am. There are now a substantial number of stage IV melanoma patients who were diagnosed in 2013 or after who, due to the amazing developments in immunotherapy, like me, are defying the odds and continuing to live with cancer. There are, as I’m always pointing out so many other patients who started this ‘journey’ with me but who have died so as I’ve said I am very much one of the lucky ones. However September and particularly September 24th is a difficult time for me as the memories alongside the terrible fears about how much longer I’ll continue to ‘be lucky’ flood in.
This September 24th not only marks 5 years but just in case this date wasn’t already stressful enough by some weird coincidence or possibly those damn goblins of mischief having fun, I also received my latest body CT and brain MRI results today.
I was given the option of changing the results appointment when I realised how the dates fell but in the end felt that September 24th will always be an awful day so if the news were to be bad it would just add to the shitness but if the news was good then it might go some way to saving this poor day. In the run up to today it’s been impossible not to get lost in the memories of 5 years ago and to imagine meeting with my doctor today and knowing within a second of walking into the room that once again I’d been pushed back on to that damn rollercoaster.
Thankfully and joyfully my results today are once again stable and my brain is brilliantly unremarkable. When the news properly sinks in I shall be breathing a massive sigh of relief.