Dei Gratia, ego est fin Finis.
Twenty-four months; seven-hundred and thirty tomorrows ……………two years. A moment of huge clinical significance. I now face a less than 5% chance of relapse. The days of persistently checking every lymph node in my body have passed, the physical scars have mostly faded, and the psychological scars – well they are scabbing over too.
The last three-or-so years have contained some of the cruellest experiences one could imagine, however those experiences have been dispersed between days of hope, days of love and days of enjoyment. My express wish, of course, would have been to never play with the Devil in the first place – although I can’t help but recognise at times it was enthralling (as well as exhausting) and as a result I have a well of wisdom and maturity (in some situations…) which plays out to be of great advantage in day-to-day life.
From Tuesday 09 July 2019, when this mess all started to Thursday 13 October 2022, today. The days of doom and gloom seem so far behind. They do, however, ensure to rear their ugly head occasionally, just to remind you things can change in an instant and that your freedoms are beautiful but delicate.
This struggle has engulfed thousands of hours in my life, many of those spent in hospital waiting rooms…if not a hospital bed, I count no less than 26 Consultants to have played a part, two-hundred and forty-eight hours of direct cytotoxic treatment, and many more hours of worry and concern…
Some of the hair-rasing, spine-chilling moments was when my body was getting close to the edge of its capabilities, challenges far beyond what I thought it possible the human body could adapt to. The one night that you all may recall was in Forth Valley Royal Hospital (FVRH) when with a fever, a nurse took my heart rate....236 beats per minute. The proverbial was running down my leg as I queried if this was the end? Another moment, during my Transplant, at the Queen Elizabeth University Hospital - I was neutropenic with a white cell count of 0.0. Fever raging, and I could not stop shaking – I reckon I wasn’t far off the ICU that night.
Of course, there was also moments of worry and concern that did not involve an immediate risk to my life but represented a far more serious and longer-term risk. The lowest, I have ever been – was May 2020 when I had it confirmed that I suffered a relapse. My mind instantly went back to a conversation I had around 8-months earlier, a conversation that suggested if you relapse within a year of intensified front-line treatment, you had a 15% chance of survival. That point was the only real time where I was numb, and thought “Oh F&%^, I am going to die here.”
On the contrary though, there were moments of joy, the very moments where your survival is confirmed, these are moments of sheer elation that I have never experienced anything comparable before. I feel these moments of happiness are so difficult to explain and are so sacred, far beyond any sort of “artificial” happiness that I have experienced – even Hibs winning the Scottish Cup.
Of course, through this journey I have been fortunate (or unfortunate depending on the way you look at it) to have experienced such joy, twice. 20th December 2019 and 23rd September 2020 – two occasions where “no evidence of disease” was the reason for the phone call, two occasions where my life hung in the balance, two occasions where I had given it all, and everything was resting on the outcome.
My journey has also afforded me the opportunity to be a pioneer, trialling Nivolumab as a bridge to autologous transplant in Hodgkin Lymphoma - helping to shape the outcomes for many more that will follow me. We come closer every day to a “cure” with some magnificent work going on to develop treatments and vaccines. However, one last plea from me, please consider joining the Stem Cell Register, and be that person that offers hope to folks in the most precarious of situations.
We are incredibly lucky in this country to have the National Health Service, and we must protect it at all costs. It may not be the most efficient, but it certainly isn’t broken. It has a frightening ability to offer the most innovative treatment. When things go wrong it can get you where you need to be very quickly. The staff, no matter their profession, care about you, they understand what you are going through and are so passionate to deliver the outcome you want. They celebrate the highs with you, support you during the lows and must be commended. I could not name everyone, but I must mention Dr Roddy Neilson, Dr Katrina Farrell, Dr Julie Gilles and Margaret Walker - these folks embody everything the NHS is, should be and are frighteningly good at their jobs. From me to you – thank you.
So, with this post, I intend to bring the blog to a close. I will leave the blog on-line, but it is time for this particular chapter to be stored away in the wilderness of my mind. You have joined me for one hell of a journey, the tears; the fears and the living – for your generous support I shall be forever indebted and grateful, and of course, it is only fair that I leave you with one last lecture:
In the end up – no matter how dark it is or how much rain has fallen. Stand tall with courage and conviction, apply hope, and never ever forget, come what may, the sun will rise, the rain will stop and…
Some Day it will all be over.