It’s all a numbers game and sometimes those numbers are terrifying. I have avoided writing about this for a few weeks, partly because I was hoping that this particular set of numbers would turn out to be an error (spoiler: it wasn’t) and then having been surprised by the depth of my total disappointment with the outcome, I have been unable to face putting much to paper except in the darkest moments of the nights, where I lay awake with a brain ready to burst and had to reach for a pen and my notebook if only to create a little mental space again in which I might find sleep.
As with most avoidance tactics, they are usually fruitless and sooner or later we have to confront the multiple elephants that fill the front room, the bedroom, the kitchen and the shower. This instance was no exception and my elephant was exceptionally grumpy for having been ignored, despite demanding my attention for a couple of weeks.
Some honesty is required here too. Going treatment free (or as the formal jargon goes, attempting Treatment Free Remission) was always poor odds - but it was also the best odds I had been handed for almost 9 years, and I was prepared for the fact that it might not be for me, but for most people who attempt it they are largely left alone for a year before decisions about resuming drug therapy are made.
I lasted less than 12 weeks.
When the call came with a result that meant I could probably go treatment free, it was June 23rd, 2022. I was at Glastonbury Festival, sat alongside our rented camper van and the phone rang. It was a small sample, but the result was good, or at least good enough for me. Yes, I would go in for a re-test, but I was also sat in one of my most favourite places in the world, between two pylons, gently crackling away in the dampness of the mid morning, enjoying the sun on my face. I made the decision. I would go treatment free and I would do it today. Mum and I opened Prosecco, toasted to the last 8 and a half years and quietly, gratefully, joyously shared the choice and the moment with our friends and those camped around us. This change, a change that when I was diagnosed wasn’t even talked about let alone tested outside of a clinical trial called ‘Destiny’, had felt like a long time coming.
It gave the weekend a gold tint as I rolled around the festival site, enjoying music, drinking, not having to think about what and when I ate.
I had pushed this day back on a number of occasions. Travel plans that didn’t line up, a real sense of dread that going treatment free during the pandemic and its various lockdowns wasn’t a sensible thing to do. This was as good a moment as I was going to get this year, so from then on I have rolled with it.
There have been great moments this Summer. Learning to dive, taking time to sit and watch the sunset on my beach, on other beaches, eating late and enjoying the company of others as the constant low level fatigue retreated, getting to grips with my new drone... all were a tonic.
It was not all smooth, I had had COVID again which knocked me hard, and was living in a slightly hyper aware state of how my body felt, watching and hoping to avoid TKI withdrawal... But overall I enjoyed the glimpse of a free-er version of myself that I recognised as more of the person I had been before my diagnosis, before drugs, their demand on my time and timings around how and when they had been taken. Looking back from this new position I gained a deeper awareness of how this had had slowly taken over my life and I was glad to be done with it.
The Autumn travel circuit in my schedule rolled around. I had a great birthday in France, and arranged the timings of checkup to make sure I had one final test a day before I left for the US, and I did all this with total confidence that it would all be fine.
I enjoyed time with family, strolled into the arms of friends, made new ones as I explored cities I knew, like San Francisco and visited New Orleans for the first time. There in particular I drank deeply of the good company around me. It is both familiar in it’s European roots but also a city so very, very different from the Europe with its constant mix of music, food and liquor. It is intoxicating like few other places I have been to. Probably another post in itself there.
But, whilst dozing in bed in Seattle amongst it all, the phone rang just after 4am.
Katy, my CNS, was calling me with a result. A high number - higher than anyone would normally expect but not impossible. A little seed of doubt that it might be a lab error but a repeat test would be the only way to know for sure. I would try and arrange one whilst I was away - again I was certain that this number must be a lab error. But I was shocked and sat sipping coffee trying to unravel it all later that morning.
It turns out even in the most capitalist healthcare system in the world that cash is not King. I could swallow the $500 needed for me to get re-tested in the US but then the lab wanted a referral via a clinic at which point it looked like all options would cost many times more than the cost of a cheap ticket home. After a few days of exploring some options and mulling it over, exploring about having drugs shipped to me in the US and gaming a number of scenarios, I decided that the easiest way to handle this would be to fly home for just over a week once I had landed on the East Coast of the US. That would put me right in the middle of the system that knew who I was and could sort tests and drugs as needed.
So I rode it out. I explored New Orleans suppressing the niggling doubt that something was out, writing off my sense that I could feel something was wrong as my being paranoid and threw myself into everything - and had a great time - drinking, seeing jazz, eating beignet.
Deep down I was starting to prepare, but only a little. I am not foolish enough to deny the sense of a growing truth even in the moments of deepest desperation that things might (please!) be different. I have never had much luck when it comes to such things and only have to think on the fact that despite being repeatedly in the path of the healthcare system, knowing something was up, it took over 6 months of telling people that I thought I was diabetic before they figured it out and went ‘actually no, it’s Leukaemia...’ The alarm had been sounded. I had to get checked.
My flight home was distinctly uncomfortable. I ended up in the middle seat of economy with the chair of the person in front reclined in to my face from take off to landing and I could not unwind. I travelled light, leaving most of my belongings in the US but even then felt the hour it took to clear passport control was one of the slowest in a while. I kept trying to smile, but I had somewhere to be.
I zipped into Central London and on to the train back to Liverpool and suitcase in tow went to the hospital. The phlebotomist was rough making even my nurse wince as she walked in to briefly see me and saw the needle being threaded in and out of my right arm in search of a vein. I have had rough ‘vampires’ before, but I cannot recall one leaving me bleeding down my arm as this one did. The small vials of my blood were whisked off to the lab who had been told to expect them. Katy had spoken to everyone she could to make sure that we got these results as quickly as we could. But then there was just space. A wait. There is nothing that makes the NHS move like cancer, but even then, and I am sure it’s the same with other long term illnesses, there is a lot of time spend waiting. Waiting in waiting rooms, waiting for results, waiting for appointments...
In stepping out of the hospital I had to figure out what day it was. I had started travelling the morning before, from New Orleans and now it was late afternoon the day after. It was Wednesday.
I went home and tried to put it out of my mind. I failed spectacularly.
When the phone call came mid-morning on Monday, the tone of Katy’s voice gave everything away in the first few words. I headed home and pulled out the box of in-date drugs that I had sat on a shelf and had been looking at for a few days. I would be restarting on the full dose and not the half dose that I had been used to for the last two years. I knew then, as I popped the small orange capsules out of their foil, that this was going to be a bumpy ride.
I tell people that I try hard not to let CML define who I am or takeover my life but it does in insidious and small ways. It imposes a fixity on my life and my time and in letting that all fall away did I realise quite how much it had taken root. I have always been aware of how often without really meaning to it comes up in conversation and here we go again. I am no longer treatment free. I am back the drugs and locked into a routine. I again have something that interferes with my days to the point that it will become a talking point.
Adjusting back to the physical side effects will take a couple of weeks… a month maybe. The mental and emotional knock will process over however long it takes. A lot of the feelings at the time of any serious diagnosis are lost in the sheer chaos and fielding of the emotions of others. The “shock factor” with cancer is high, the sadness is deep, the uncertainty all consuming and then there’s a slow fading of all this intensity towards hope (if we’re lucky) and acceptance. But never really disappointment. It’s the “let down” that’s new here.
I had rationalised some of this in considering the potential outcome of note being successful with TFR, but in a normal circumstance the decision to resume treatment would have been a response to a slow moving trend. I simply wasn’t ready for the abruptness of it all.
Over the last few days I have been racked by fits of crying so intense they shake your whole body with little or no warning. I have begun to re-shuffle the priorities and adjust the plans and ease myself back into the familiarity of the routine. It’s all unpleasant muscle memory. I have to believe in the process and the drugs - and I do. But I wish that I didn’t have to. I wish it wasn’t all a numbers game where it’s not me rolling the dice but watching desperately, a captive audience of one, to see how they land.
