In Remission ... i What does it actually mean?
“Ok Mr Davies , you are now in remission, go home and enjoy the rest of your life“..
It was the end of August 2016 , I was sat on the edge of my hospital bed running through the list of discharge medicine, I was to take home, following completion of my treatment.
How I had waited for , thought about and visualised being told that it was all over.. the treatment had been a success, I had made it through the darkness of months of highly invasive chemotherapy, radiotherapy and a bone marrow transplant.. The end goal had been achieved.
Or had it ?
Every time I mention the word in conjunction with my treatment for leukaemia, to friends,family and even strangers who ask how I’m doing, a knowing look appears in their eyes that says , ah that’s good , he’s better now.
At that moment I want to say well actually that’s not it .. in fact we don’t know when IT will be achieved, if ever !
Of course you don’t say anything of the sort, my usual response is to smile, thank them for the support and then switch the topic away from me ,onto something less dramatic.
Cancer isn’t like having a broken arm , where established medical science knows how to treat the break, how long it’s going to take to heal and what to do when it’s time to take the cast off.
Medical science in fact is only just starting to get a handle on all this cancer stuff.. Thankfully we now know far more and have generally better statistical outcomes from treatment than even ten or five years ago. My guess is that in another five or ten years things will have advanced well beyond what’s considered possible today. That is indeed a great feeling for all patients and offers hope for the future.
However at this point in time no real certainties of outcome exist in all cases. In my own diagnosis the fantastic state of remission lasted eighteen months first time round.
In February 2018 I was out chasing down a personal best on my cycling app on a familiar route out in the Peak District. Half way back to Nottingham I recieved a call from the hospital.
On getting back home, I returned the call, to be told I needed to come back to the haematology department to give another biopsy, as the result of one I’d given two weeks before was inconclusive. I’ve since learnt what that actually meant was that the lab had returned a positive relapsed sample but that the staff wouldn’t want to tell you over the phone.
Sure enough the new sample confirmed the devastating news that I had indeed relapsed, the odds of survival were firmly stacked against me.
The opportunity to do a trial down in London ,based around CAR T-Cell therapy was seen as my best chance to get through the situation I was facing.
Having invested all my hopes in the dream outcome, of the trial putting me into remission, it was an emotional moment when I got the news again that the state of remission had been achieved once more.
I know for sure, having experienced that exact situation, that an announcement of remission doesn’t mean that the disease has been beaten forever; vanquished,never to return.
What has happened, is that, at this point in time, perhaps just for now, things are swinging in your favour.
In no way would I feel anything but extreme gratitude towards all the people involved in getting me into that state.
On a personal level I live every moment in the here and now .. If remission is to be my status for the next ten years then that would be a fantastic opportunity that I fully intend to make the most of.. If that opportunity is to end in a much shorter time frame than that then equally I have no regrets as to how I’ve chosen to use the time.
So ,I will continue to run with the perception that remission means the day has been saved, when I’m chatting to people. It’s much easier to do that than to try to put a negative spin on their enthusiasm for your situation.
Ironically remission may mean the day has actually been saved.. I genuinely am inspired to think that it has happened, when I’m hanging onto my handlebars, flying down the side of the steep hill I’ve just spent the last ten minutes riding up ,no one or nothing is going to convince me otherwise!
Diagnosed with Acute lymphoblastic leukaemia..
Treatment ; Chemotherapy, Radiotherapy and Bone marrow transplant.
All treatment courtesy of Nottingham City Hospital, Haematology department.
Remission achieved August 2016
Accepted onto a trial for CAR T-Cell therapy at UCLH
Remission achieved July 2018.
31st July 2019 still turning the pedals over..
The journey continues ...
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