The News...and it's not great
Here we go again, folks...
Having rung The Bell to signal the end of chemo almost exactly 3 months ago, the picture above is my current view, right now, as I type. I’m back, sitting quietly in the wonderful Judy Beard Day Unit at The Conquest Hospital in Hastings, awaiting the start of Chemo Season 3, Episode 1. It’s a monumental disappointment for Bekky and me to be back here, and signals the start of another arduous period of treatment. Let me bring you up to speed on the last few weeks.
Chemo (Season 2) ended in mid-July and only a couple of weeks later I was into The London Clinic for my stoma reversal. The first couple of days after the operation were a breeze, but then things quickly became deeply unamusing as my bowel started to function again, only very, very badly. For about 48 hours it was inadvisable to enter my room without first donning a pair of sturdy waders. I was released after 8 days and slowly (very slowly) my “function” improved. There was a lot of running back and forth to the loo, and several days and nights of intense pain - possibly the worst pain I experienced since this whole thing began. Thankfully this is now more or less over with, although I am even today occasionally taken by surprise. It’s not unexpected, though - the surgeon suggested normal function and regularity may not return for a good few months after surgery.
In early September, after a brief period of near-normality, Bekky and I finally managed to escape the country for the first time since February 2016, and spent an utterly delicious ten days in Spain where we completely unwound, enjoying doing nothing and just being. It was heaven.
While we were there, all sorts of trivial yet surprisingly wonderful plans were discussed - plans like how we would work our morning routines now that normality was about to be resumed; plans like my gentle return to work on a daily basis; plans for Bekky’s new job as a part-time university lecturer. I researched which gym I would join in order to regain a degree of fitness after such a long sedentary interval and we talked about how much we looked forward to bike rides together, long Sunday afternoon walks, socialising with our friends that we hadn’t really seen in so long, and the raft of looming 40th birthday parties. It was all very exciting.
We got back from Spain and after a routine CT scan on Friday, we went straight to the first of those looming 40th birthday parties, a fabulous night, and on the Monday following, we launched into the new regime with a feeling akin to the beginning of a new school term. A new job for Bekky, back to work for me.
We were up early, I took the dog for a glorious walk as the sun was rising and I even managed to get to work early. Although I had been to the office many times over the previous 18 months, this was a significant moment - I had my own desk, my own computer, even my own mug! Such silly, banal little things yet to me, such hugely significant little things. I settled in, caught up with my colleagues, made plans in the diary, arranged appointments, and felt a genuine excitement to be back in my own little world once again, unhindered by cancer, chemo or related hospital appointments. I could finally focus on that most elusive of things - a normal life.
At about midday, three hours into this new found normality, my mobile rang with an unknown number. It was the Clinical Nurse Specialist (CNS) who works alongside my oncologist. I had no idea why she would be calling but thought nothing of it initially. “Dr M would like to see you in clinic tomorrow at 5pm”. In an instant, my little bubble was spectacularly burst. The CNS didn’t know why Dr M should have requested an appointment, but having had a CT scan on Friday, I knew my oncologist would usually just send me a quick email to say all was well. So I realised immediately that this was not going to be good news. I went straight upstairs to the board room and called Bekky while trying to hold back the tears. The sense of disappointment was indescribable. Bekky was very optimistic and we agreed it might be nothing but in my heart (and, I suspect, hers) I knew it wasn’t.
As luck would have it, Bekky and I were due to meet up a bit later that afternoon at the fertility clinic so we said we would talk further when we met. Shortly before the cancer struck, we had decided to start trying for a baby. However, cancer quickly brought those dreams to a grinding halt. After chemo finished in July, we thought we would try to pursue things further and had already had discussions with the fertility unit about the possibilities of Bekky having IVF (complications in my bowel surgery meant that IVF was our only option). Our meeting that afternoon was, as far as we were concerned, to discuss when we could start.
It didn't turn out that way. The doctor revealed that, owing to the results of various blood tests, the NHS would not be prepared to fund any IVF for us. He went on to say that, even if we went privately, the chances of conception would be 5-10%. For the second time in less than 3 hours, we were dealt a monumental, potentially life-changing blow.
We went home in tatters, completely numb, and struggling to process the two-fold horrors of the information we had just received. My cancer was almost certainly back (not that it had ever gone away), and we might not be able to have children. To make matters worse, while we knew that our meeting with the oncologist the following day would not be good news, we had no idea how not good that news would be. Questions whirled around our heads - was the cancer back in the bowel? In the liver? Was it a new metastasis, perhaps in the kidney or the stomach wall? We had no idea and not knowing was torture, on top of the fact that we had just learnt that we were unlikely ever to have children of our own. It was devastating.
We decided in the end that we couldn’t wait another 24 hours to find out so I contacted my oncologist and asked her to at least give us the headlines over the phone. She was reticent, which further enhanced our anxiety, but eventually she called at 8pm, from home, while we were having supper. Over the speakerphone, she told us that the CT scan had shown a fairly significant change in the lung nodule. Not only had the original one nearly doubled in size since my last scan, but two new, smaller ones had been spotted in my other lung, along with a suspicion that my lymph glands in my lung had also succumbed to cancer. She said she would fill in all the blanks the following day.
At the time, we took this news to be the best bad news we could have hoped for. We were already aware that there was still a small tumour in the lung so at least it wasn’t anything new. This was a teaspoon’s worth of good news to mix in with the barrel-load of bad news we had learnt over the course of a dark, dark day.
The following evening came around fairly quickly and we spent over an hour with the great Dr M talking things through. We looked at the scans and she showed us the new nodules as well as the suspicious lymph glands. None of it made much sense but we took her word for it. It turns out there are at least three options still open to us. Firstly, more chemotherapy, but this time a cocktail called Folfiri, as opposed to Folfox last time. We were told that Folfiri is no better and no worse than Folfox in terms of effectivity, just a different approach to the same problem. The side effects, however, are likely to be more severe, primarily diarrhoea and stomach cramps but also tiredness and almost certain baldness (stop giggling at the back). The baldness will affect what little hair I have left on my head, but may also affect every follicle on my body, down to my eyebrows and eyelashes. Oh splendid.
Also available in the armoury is something called Radio Frequency Ablation, and Immunotherapy but, in the case of the latter, only because I am lucky enough to have private health insurance. If I did not, it would be chemotherapy alone, and everything else we would have to pay for - tens of thousands of pounds which we don’t have.
But then came the kicker. At the end of the meeting, I asked her for my prognosis. She talked for several minutes, after which I said “So what you’re saying is that there’s a good chance I can be cured, and there’s a good chance I can’t?”. “Errr, not quite” came the answer.
“What I am saying is that there is a chance you can be cured, but there is a good chance you cannot”.
In a shockingly short space of time, we had effectively been hit by no fewer than three mammoth blows. For the second time in that same period, Bekky and I left hospital reeling, shocked, numbed, profoundly upset and quietly sobbing. Not only is the cancer still in full swing in my body, it has become harder to deal with. This prognosis changes nothing and everything. Until now, we had only had fairly positive, upbeat conversations with Dr M. This was something quite different. This was not positive, this was very ambiguous and left us with many unanswered questions, to which not even the experts can provide answers at this stage. The next six months are going to be critical, that’s all we know.
All we can do now is wait and watch and hope and pray. We have to do as we are told and follow the advice of the experts. We are vainly clinging on to the fact that there is a chance that all will be well, but we are also in the process of getting our heads around the fact that there’s a good chance all may not be well. We are hanging in the balance.
As I have always said, I believe cancer is as hard, if not harder for the onlookers than the patient. But it’s just possible that it’s hardest of all for my wife. Having always been told that I stand a good chance of being cured, without wishing to be too pessimistic, we now have to consider that I may not be cured. That I may not get through this. That Bekky may be left alone, unsupported, her husband having the done the most final of all disappearing acts. And this is made worse by not knowing for sure. I may be ok. I may get through this, and all will be well. But sadly, the odds are stacked against me. Weirdly it would almost be easier to be given a terminal diagnosis, because at least that way we know what to expect. As it stands, we are in a very grey area, surrounded by a thick fog, none of which will lift for some months yet. Mentally, it is an immensely difficult place for us both to be.
This instalment of The Blog has been very lengthy and rather negative, for which I apologise, but I feel it is important not to spare the detail, and for you, my friends and family, to try to grasp the magnitude of the astonishing, shitty misfortunes that Bekky and I have been dealt lately. Intense doesn’t begin to cover it. It has been cruel and unrelenting.
But there is, of course, some good news (cue optimistic, triumphal, happy music). A pessimistic cancer prognosis spurs you to do things you otherwise might not have.
At the end of last week, for example, I found myself at Legoland in Windsor for 24 hours with my brother, his wife and their two wonderful daughters which was utterly brilliant (in a village kind of way), although it would have been even better had Bekky not had an inescapable appointment with her new job (did I mention she’s now a part-time university lecturer?!). And with my chemo now being on a Tuesday, we hope to have at least a few days each fortnight (and hopefully every other weekend) over the next few months to enjoy a spot of the normality that has been so difficult to grasp of late.
And we are not going to let this tsunami of excrement hold us back - we will do our best to lead as normal a life as possible; we will travel (when funds/chemo allows); we will get to those 40th birthday parties (when chemo allows); we will catch up with as many friends as we can whenever we can; I’m even going to start a bucket list - who knows what the future holds, there’s no harm in doing so, whatever the outcome!
Dammit, with the help of my wife, my family and my friends, I am going to do my absolute best to beat this thing.
And we still have our free hospital parking permit.