A lot has happened since my last post, and I know I will skip large chunks of it, since only a couple of key events really matter right now. Readers, I would suggest sitting down, and buckling up: at points this post is not going to be a barrel of laughs.
In the light of the suspension of treatment, my oncologist had suggested a possible next step of seeking a private consultation with a view to discussing any possible other treatment paths. He provided the name and contact information of a former colleague of his at The Royal Marsden and noted that she was likely as good a source of information and assistance as anyone. I got in touch with the Marsden and then had several days of frustration, dealing with various departments, trying to get an answer on what exactly I should be doing. It wasn't helped by trying to co-ordinate with my own health insurers and (as I later found out) dealing with a temp covering holiday leave. But, in the end, we got an appointment fixed up, and if nothing else, it gave us a day trip to London to see some different scenery.
If it were possible to have a doctor-crush, this would have been the time (and my wife was in full agreement). If this consultant were my GP, I would be going to see her as often as possible. She was brilliant in many ways: clearly an expert in her field, incredible compassion, ability to explain complex ideas in a clear and understandable way. I could go on. She discussed my condition, pretty much from cradle to grave (excuse the pun), and explained at each stage, from initial diagnosis, through treatment choices, to present day, exactly why I am in the state I am in. At one point she was kind enough to note that the only reason she was going into such detail was because we were obviously intelligent, and interested, enough to warrant it.
We discussed my 2 possible paths: a private course of treatment or the option of a clinical trial at The Christie. With regards to the former, she described that the efficacy of the particular drug was no better than the mainstream line that had failed, and more importantly, the side effects were potentially rougher on the body than any previous treatment line. This pretty much made my mind up: my body has weakened over time, and in all honesty, I was not sure I could face putting myself through some more months of pain and misery, only to end up in no better place. We then discussed the potential clinical trial: her view was that, whilst a trial by definition is experimental medicine, it was worth a shot, because, well, you never know. She also noted that it didn't really matter how much money you could throw at a condition like mine, ultimately cancer will almost certainly prevail. We left the meeting, and London, in a bit of a fog, and had a really good conversation on the journey home. It actually provided me a lot of help, and strange as it might sound, I felt more at peace than I had done for a long time.
So, this put all the eggs in the basket of The Christie's clinical trials team. I had attended a first meeting for bloodwork, and was deemed to be a healthy enough sick person to make it to the next stage of acceptance. This was going to involve a number of scans, more bloodwork, more poking and prodding, and just general fact finding. We arranged a pair of visits, one could be done in a day trip, the other was going to need an overnight stay at a hotel, with a full day at the hospital on the agenda. The first day trip passed without incident: it was a bone density scan. And in the absence of being told adverse results, I can only assume my bones were dense enough.
The 2nd visit was more involved. We got into Manchester the night before, and I was dropped at the hospital at 8am. The day started with bloodwork: I lost count of the number of vials the nurse drew. I then had a long meeting with the trial doctor going over my medical history, and had a thorough exam. Then I had 2 more scans arranged: one being a bone strength scan, the other just a routine CT scan to benchmark my condition. The bone one was interesting, since it required a radioactive tracing agent to be injected. I did ask the technician if there was a chance I could go all Hulk. He just looked at me, I don't think it was the first time he had a comedian (sic) as a patient. Before the scans I got a call from the trials office, asking that I pop back up at the end to have a quick chat. I thought nothing of it at that point. Waiting for the radiation to work its way through my body, I went off for a CT scan. This was same old, same old. Then back to nuclear medicine for the bone scan. Before I went into the tech room I had to use a specially designated toilet, with a radiation hazard sign on the door, and a waste bin that was marked showing all contents would be scanned before disposal. It was certainly a change from a normal hospital loo.
So, scans and tests done, and still no superpowers to show for the day, I found myself back up at the clinical trials office, waiting for the doctor to see me. A nurse came out and asked if my wife was with me (she was not) and if not, could she get down to the hospital to attend the meeting. This immediately fired up my radar of bad news. In current covid times, the last thing any hospital wants is visitors in the building. The fact they were encouraging one in meant they either had really good news or really bad news to deliver. I was sensible enough to know it was going to be the latter. The same nurse came back a couple more times to ask if my wife was on the way, this was really getting worrying.
The doctor got free, and I was called into a meeting, before my wife arrived, so she called my phone and joined us on speaker. The news wasn't good: a couple of blood markers had thrown up concerns as to my eligibility for a trial place. But more relevant, the CT scan showed progression in the liver, and to a greater extent the lungs. The condition of which meant I was a no for the trial. She described how the disease will progress to a tipping point, after which there is nothing that can really be done. Sadly, I was now there. I have no idea how, but I took this news reasonably well, and didn't melt down, cry etc. Then came the body blow. My wife reminded me of the question I wanted to ask, namely the "how long left?" one. The reply was devastating, best case a low number of months, worst case a matter of weeks. I don't know how people can have jobs that require the delivery of such news to strangers. The mental fortitude to manage it is incredible. She handled it amazingly well. I struggle to recall how the conversation fully finished, but I thanked her for being so honest, and so compassionate, and said my goodbyes and joined my wife in the car.
I sat in the car somewhat numb, neither of us really knew what to say to the other. But we had a 3.5-4 hour dive ahead of us on shitty motorways to find something to talk about. Quickly I made the decision that I had to start telling people, starting with my sister. So I fired up the handsfree and called her. Even with a heads-up from my wife, my sister was in pieces. I was too, truth be told. But we talked through what had just happened, and agreed to meet up ASAP. That was the start of about 3 hours of calls, pretty much non-stop on the drive home. Telling my boss, other family members, close friends. The reactions were consistent (utter disbelief and sympathy) and diverse (emotional meltdowns from some, stunned silence from others). One friend noted that he couldn't believe I had actually started calling people so soon after the news. It didn't occur to me to do anything different: telling one person made it a bit easier to make the next call. And having to talk about it again and again helped me to process the grim reality.
Eventually we made it home, I can't remember what we did, but I don't recall it being a particularly restful night of sleep. The next day I awoke to a new world, one that I now knew I was not long destined for. We chatted about what to do, who to see, where to go. The conclusions were 1) we had to try and find ways to eke out some joy in a pit of hopeless despair and 2) F-lockdown, I had to now try and see my family and close friends when I could, since time was not on my side. I should not have worried about the latter. I started to get messages from people asking if they could come and visit. Clearly all my friends were happy to disregard lockdown requirements in order to see me. That, in itself, was humbling. I made a plan to book one a day, to see how I coped. What I wasn't good at to start with was making sure I carved out time for my wife too, but we soon got on top of that, and came up with a plan.
One of the first visitors was my oldest school friend, one of my closest, and best friends. He popped over for a couple of hours, and during the visit, managed to reduce me to tears: he passed on a message from his daughter, impressing on her dad to tell me that she and her brother were better people because of the positive influences I had had on them both. I really didn't expect to hear that. And didn't realise it would set a tone for the coming weeks. I started to receive emails and messages from various people: close friends, other friends, work colleagues. Each one describing how I had touched their life in a positive way, even if just some random or minor thing. Each message set me off crying again. It hammered home one thing: you don't have to have built something, invented something, etc to have left a legacy. I never thought I had, but it seemed other people wanted to differ. What I will also say at this point, is if someone has done something good for you, tell them, and tell them now. Don't leave it until after they have gone. I guess my openness in telling people the reality of my situation has afforded others the chance to tell me a load of nice things.
Aside from catching up with people, I had the joys of trying to get some affairs in order. I finalised my will, planned my funeral and other such happy, happy stuff. None of it is in anyway nice to do, but it seemed better to get on the case. For the funeral in particular, current lockdown rules restrict attendance to 30 people, so it seemed vital to think about. On a health front, I can feel a deterioration is happening. Things are just getting harder to do day to day. Not that I am bedridden, incapacitated or similar, I just know I am not the same person I was some months back. This makes life frustrating, having to adjust to a new normal each time. But, the tide cannot be stemmed, so I just have to get on with whatever is necessary.
This might well be the last post in the blog, although I would like to think I would get around to more as time permits. For those that have read from inception, or close to it, thank you for sticking with me. I hope it has given some insight into what a shit-show is created from dealing with a cancer diagnosis and subsequent treatment. At this point I had hoped to post some wise words but I really have little to add. Aside from one thing. People talk about cancer being a fight. They talk about the need to be strong to face the fight. I don't buy into this, since it suggests that those that don't survive are in some way weak. It is not a fight, a fight might be fair, you might have a chance to overcome. Cancer isn't like that. It is a horrific disease that, when it reaches the stage I have it, will almost certainly kill you. There is no fighting that, and it doesn't matter how brave or strong you think you are.
And with that, I'll borrow from the Sundays' 1990 indie hit, and simply say here's where the story ends. Unless, of course, it doesn't.