It’s not quite here yet, one week to go, but after years of envisaging, daring to dream of this momentous date, it actually feels like it’s suddenly creeped up and it’s far heavier than the pure celebrations I imagined it would be.
5 years ago.
How everything can change in a split second. EVERYTHING.
One very normal day, the 19th September 2018 to be exact, completely out of the blue, I got a strange deja-vu feeling, my bedroom started spinning, I collapsed with a seizure, was blue-lighted to hospital and a few hours later they had discovered a tumour covering over a quarter of my brain. There were no symptoms previously at all.
A few months later, after highly successful surgery, it was confirmed as stage 4 brain cancer with a 75% chance of surviving less than 18 months and a 95% chance of surviving less than 5 years.
A year and a half followed of intense treatment here and abroad – surgery, chemotherapy, radiotherapy, immunotherapy, other medicines and electrodes stuck all over my wet-shaved scalp and plugged into a heavy rucksack that I carried on my back for 7 months non-stop. I tried so many things.
Something paid off and for 3 years I had no tumours at all, nothing on my scans so apart from the huge cavity from surgery, I was the same as someone without cancer.
My life back but always with the edge of “we can’t say you don’t have cancer because tbrain cancer especially doesn’t go and it will come back”
And so it did. Still a shock but the 2nd tumour they spotted just on a routine MRI 4 years later was tiny and felt so manageable after everything I’d been through. A blip in comparison to the ginormous tumour they had initially found and we got rid of.
4 cycles of chemo, my immunotherapy gearing up again and the small blip on my MRI had vanished almost as quickly as it appeared.
Clear MRIs again, tumour gone, life back.
6 months later and this time it’s not a blip. It’s much more serious. It’s always been serious from that split second 5 years ago but this time the options presented are very different. It’s not what can we do, it’s how can we manage how long you have left.
Maybe but it’s me and given that I’ve defied the odds already, twice, I still believe in defying them again.
And so far, even this time, that belief has been working out. The surgery I was determined and had to go to extreme lengths to have, has been more successful than I ever dreamt it would be and that is everything to be starting it all over again with.
Once more, I’m in a place no-one clinically expected me to achieve and I have every intention of continuing to be that person through continuing to find more options.
But I’ve pushed, hard, because for me personally, it has been the right thing to do for so many reasons but most importantly because I’ve had 5 years to understand it.
The toll however has been extreme.
5 years of exploring, learning, talking to clinicians all over the world, decision making, monthly trips to Germany for 2 years, the financial burdens of it all, anxiety every 3 months with the routine MRI scans, planning a life I’m constantly having to adjust.
I’m in the best possible place I can be in right now with regards to what happened in the surgery, but I’m only just beginning to process the weight of that and everything that led up to it including the acceptance of the risk I took on for me and everyone else around me.
The timing therefore of the 5 year anniversary I’ve spent so long dreaming of is somewhat ironic and extreme.
I have a few days before it’s actually here but the reflection has started and I know I have to welcome and allow it all. Of course there will be celebrations and I will take the time to recognise how unbelievably grateful and lucky I am for everything I have had the chance to do in these 5 years especially with my daughter but I’m not going to just say that’s it because it hasn’t been and I need to recognise and share that too.
The 19th September will forever be the day it all changed and this year it will be even more significant.
How I spend next Tuesday will be very considerate to all my emotions around it but will definitely include some celebrations too, I have to honour the belief and dreams over all these years that I would get there so I better start preparing! What a day it will be.