I have started this post a few times in my head, but never really managed to get it all out right. I am sure this will be no better, but I need to get this one off my chest. As noted last time around, I had my end of cycle CT scan on the 5th, and results were due on the 20th. Going through cancer treatment, time horizons change from normal life (and I mean actual normal, not lockdown normal): essentially I soon learned you never look beyond the next scan, since that pretty much drives your future. To date, scans have rarely been good news. We had a good one after the 1st set of cycles where everything was stable, but since then, it has got progressively more depressing each time. I had no illusions that this one was going to be more of the same, with more shit piled on top. It was impossible to get away from the significance of this scan, if results were adverse, that was the end of mainstream treatment. And, to borrow a favoured phrase used by an old work colleague, that would be sub-optimal.
I don't participate in any online cancer chat forums, but I peek at one now and again, and one of the topics that regularly comes up is "scanxiety", basically the fear and worry dealing with scans. It is not something I have ever really given much thought. But, this time around, in the days building up to the 20th, it was hard to keep very dark thoughts out of my mind. From March 2019 to recent, I have made a decent fist of handling the mental side of all this rubbish, but now it was beginning to chip away at me. As ever, more of that later.
In the day or so before the 20th, various friends got in touch to wish me well, some messages on the theme of "I am sure you don't want to think about it, but I'll remind you of it all the same". Just for clarity, this made me laugh, it didn't upset me whatsoever, so if you are reading this and think, oh shit, I sent that, please don't give it a moment's more worry. As you might imagine, neither of us slept particularly on the 19th, but the morning of the 20th was always going to come around, and we had to face up to it. The following morning, the phone rang, I recognised the number, gulped, and we answered.
The oncologist walked us through the results. It was exactly as my gut-feel had suspected. Whilst the lungs remained stable, there had been further progression in the liver, indicating no positive response to the treatment, and the only logical course of action was to terminate the treatment line. And with that, all 3 mainstream drug cocktails were done. Amazingly, I didn't lose it there and then, and we had a fairly frank discussion about what happens next. Basically there were 3 possible paths (well, 4 if you included doing nothing and waiting for the inevitable): 1) looking at possible clinical trials, 2) consideration of possible private treatment paths or 3) a hail-Mary longshot protein inhibitor treatment. The protein treatment was always going to be unlikely, the oncologist explained that less than 1% of the potential patient pool ever had the relevant marker that made it a viable option, and as it subsequently showed from my genomic sequencing, I was in the 99%. Strike that one out. So, we had a couple of options to consider at this time. The oncologist would put feelers out at various research hospitals, and we would look at arranging a subsequent private consultation with a particular doctor he recommended at the Royal Marsden. The one thing we didn't talk about was death, which I was happy about. I can have that conversation at a later point. And with that we ended the call.
It was after the call that I melted down. Oddly, my wife had heard more positives in the call than she had expected and felt somewhat hopeful, based on previous situations where we have found ourselves searching for solutions all on our own. I updated my sister and boss with what the latest news was, and asked them both to leave me be a while, we needed a bit of time to get to grips with this latest shite. My wife updated our inner circle of friends and family, again asking them to keep radio silence for a while, and then we had space to talk about what happens now. As we chatted, I spoke about what was really eating me up inside: essentially not actually dying but 1) how messy the end game is going to get just before death and 2) the grief that others will be left with after my death (allow me a bit of self-indulgence on this one: I am hopeful that people will actually be unhappy when I die, rather than putting out bunting and turning it into a festival day). Neither one is in any way under my control, and the helplessness is soul-destroying. To have those thoughts rattling about your head 24/7 makes it very hard to get on with things. From the get go, I realised that I needed to be able to talk about my disease, to enable others to be comfortable talking about it too. The problem is that as good as I am talking about the mechanics of cancer, treatment protocols, some of the science, what I am terrible talking about is how it is impacting me mentally. It is not anything new. I have never been one to share such thoughts and feelings with others, even my wife. It is not because I think I am stronger for doing so, it is simply who I am.
It was at this point I confessed to my wife that I think I needed counselling of some sorts to help me, which she also felt was a good idea. I am under no illusion that counselling is going to make everything else go away, and life will be peachy again, rather if some part of the burden can be lifted, it can only assist. I know various friends who have sought counselling in past years, and in each case it has helped them. Like everything else, admitting you need help is a huge first step. I am at that point. As such, I dropped a line to a cancer counselling group that had previously been mentioned in my own support group to see if they might be able to help. A day later I got a telephone call from one of the managers to get my details, and an intro call with one of their assessors was arranged for the following Monday to see if what I was seeking matched with what they offered.
On the Friday and Saturday I felt sufficiently balanced to reach back out to friends, only by messenger, I still didn't feel I could speak to people without losing it. But, baby steps and all that stuff. On the Saturday I even felt upbeat enough to celebrate Bristol City's FA Cup win at Millwall with a beer and a glass of wine, the first alcohol I had consumed in weeks. I have no idea if this proved to be cause and effect, but physically I went to crap through Saturday night, with awful stomach pains, and was utterly wiped out on Sunday. Monday was slightly better, but certainly nowhere near 100% (or what passes for 100% for me these days). I did feel well enough to have my intro call with the counselling assessor. We talked through what was going on with me, what I was looking for, and what they provide. By the end of the call, the assessor concluded that they could help, and I would be put into the system and await an allocated counsellor. I am not sure it was the hardest assessment she has ever had to make, given the state I was in at various points. Still, that was something else moved forward.
Monday night was a bit easier, and I got up on Tuesday, had breakfast, and tried to work out how I was feeling. By lunchtime I had made yet another of my diagnoses of me being "not right" and took myself back off to bed. I tried to rest through the afternoon, but I couldn't settle, my heart was racing faster than normal, and, generally, I felt rough. By early evening I took my temperature a couple of times, each returning over 38C, and requiring a call to the cancer line at the hospital to invoke the sepsis protocol. We made the call, and I was told to bring myself to the hospital. Overnight bag packed, off we went. I shuffled into the hospital, reported to the ward reception and was asked to sit and wait whilst the room was cleared for me. It was only at this point I realised just how rotten I felt. Still, I was in the right place.
After a short wait I was taken to the room, and the standard barrage of tests and actions were taken: temperature, blood, covid swab, ECG, X-ray etc etc. Getting my temperature taken made me feel a fraud: it was returning below 38C regardless of where the nurse stuck the thermometer, but at least they didn't kick me out, rather I was given the emergency shot of Tazocin, and then it was just a waiting game. The doctor came in to see me, and we had that lovely conversation about the withholding of treatment and whether I had a DNR in place. I still did, and it was on file with the hospital. She asked me about my feelings on this. I had to be honest with her with my reply: I was in no hurry to die, but was fully aware of my standing in the priority list and knew that in a game of musical ventilators, I was going to be the one left standing up. Well, I didn't reply exactly that, but you get the gist.
Through Tuesday night and into Wednesday morning I was subjected to 4 hourly observations, and as each one was taken, the numbers were heading in the right direction. On Wednesday morning the doctor came in on rounds, and advised that 1) I didn't have covid and 2) I had some infection that was narrowed down to not-covid. Same as last summer really. The plan was to switch me to pill antibiotics and the protocol required another 24 hours of observation, meaning another night in hospital. The doctor wished me a boring and uneventful 24 hours. Which really is all you can hope for a stay in hospital. As it turned out, it proved just this, and gave me a chance to watch random TV and sleep between interruptions.
My wife had been updating friends on what was going on, and at this point a couple of mates, who between them count for some 70 years of friendship, had separately mentioned to her that they were concerned that I was isolating myself from a group of people who had genuine and deep-seated desires to help me in any way possible. Bearing in mind our previous conversations about my struggles with getting my head back in the game, it was something my wife was also well aware of. Both friends had previously got in touch with me, and offered to call, chat, whatever. In my fragile state I had pushed both away until some time in the future. This knee-jerk reaction might have had no malice or other adverse intent, but it was not healthy. I am blessed with an amazing support network of family and friends, but I have not been making use of them. As an aside, I have read many stories of other cancer sufferers who have described how they felt abandoned by people they always assumed would step-up in times of need, and for balance, been amazed by others who had unexpectedly gone above and beyond. My own experience couldn't have been different. No-one has let me down, everyone I have shared my situation with has stepped up in whatever way they can. I called one of the 2 lads, and had a good heart to heart as to what was going on in my head, and what steps I had taken. He stressed yet again that he, and everyone else, was always there when I needed to talk, vent, cry whatever. At this point I vowed to not take my support network for granted, and would certainly lean on them when I needed.
By Thursday morning I was feeling good. All my stats were bang on normal, and at rounds, the doctor announced that unless I had any other concerns I was going to be sent home. I was honest with him: I would do whatever he said. If I needed to stay, I would have no issue in doing so, but if he was sending me packing, I was not going to argue. In any event, I was happy to get home, since I had a call scheduled for that afternoon with an oncologist at the Christie in Manchester regarding the possibility of a clinical trial (in parallel to this shitty week, there had been progress from the inquiries made by my own oncologist).
We got back in good time, and I just sat by the phone waiting for the call. Sod's law dictated it came in 5 mins from the end of the 2 hour waiting window, but I didn't care. I had nothing else that was taking a priority over this call. We spoke to a lovely sounding lady, who asked general questions about me and my condition, was honest about what does and does not happen in clinical trials (including how rigorous the patient selection process is: basically they really want the healthy ones from a pool of cancer sufferers, which as you will agree, is a hell of a paradox). Essentially they have a conversation each Friday to discuss their pool versus what is available, and make decisions thereon. Bottom line I was going to be added to the next day's discussion list, and she would revert Friday or Monday with news. As it was, she called back on Friday afternoon to advise that I had at least made the 1st cut, and was invited to an actual face to face appointment the following week so they could meet me, discuss further and do preliminary bloodwork. The key with trials is to make sure that everything in the body is working as well as possible, since safety is paramount.
So, the end of all this, we have something to hang on to. Next week we have a road trip to Manchester for a night. Which is exciting in itself in a period of national lockdown. I am under no illusions that this is simply the 1st step of a long process to be accepted into a trial, and that a trial itself is experimental medicine that may or may not work. BUT, the alternative of doing nothing is not acceptable.