In my October 2020 update, I said that I hoped to have a date for my surgery during November. But that didn’t happen…
I did, however, get an appointment with my Liver Surgeon booked in for the the 1st December. So I thought I might delay this post for a couple of days, in case he had anything definitive to say. And he did!
He really did…
But, we can’t start at the end of the month, so let’s go back to the beginning of November 2020. My PET/CT Scan was booked in for Friday 13th. There were other dates available, but when that one came up, I had to have it. Personally, I’m not superstitious, but I know that some other people are. And I like to see the look on their face when I explain that I’m having a procedure on Friday 13th…
Ah, it’s the little things that get you through the day.
As PET scans go, this was my best ever one. Not because it was quick and easy, it wasn’t. It was probably the longest one I’ve ever done. No, the reason why it was so good, was that I wasn’t scanned with my arms above my head…
In all my previous PET Scans, my arms have been above my head. I mean, there is a cushion there, so my arms are technically at rest. But, after 10 minutes, it sure doesn’t feel that way. After about 25 minutes, my shoulders are in agony. For the last 15 minutes, the pain dies off, as my shoulders go numb. Then all I have to cope with is the sheer hell of 10 solid minutes of pins and needles, as my shoulders and arms come back to life.
Not this time, though.
While I was getting my injection of radioactive sugar, I casually mentioned how uncomfortable PET scans were on my shoulders. I was just making conversation while the technician lit me up, and thought no more about it. However, when it came time for the scan, the scanner techs had come up with an alternative. I could have my arms by my side! I was thrilled, and thanked the technician profusely.
To be fair, my arms were still strapped in place, so it wasn’t heavenly or anything. But it was a damn sight better than the alternative. And, because you don’t have to do any breath holds in a PET Scan, I just dozed off. Admittedly, I was woken up each time the table shuddered into a new position (for some reason PET scanners are the least smooth of all the scan options). Even so, I felt almost rested by the time I left, slightly radioactive though I might be.
And then it was just a case of waiting until the 25th, to see what the oncologist had to say. Maybe November 2020 would turn out to be a good month…
So, come 25th November 2020, I get the call I’ve been waiting for. The wait hasn’t been too bad, in terms of anxiety and stress. I certainly managed to get some blog posts out. The call itself, however, was not as satisfying as I’d hoped.
That said, my oncologist did have plenty of good news for me:
- There were no new tumours
- There tumour that was there, was still smaller than it had been in the March 2020 PET Scan
- The tumour might even have been smaller than it was in the scans I’d had in August
- The scan was being sent up to Bristol, for their MDT meeting, to discuss the options for surgery
- I’d get a clear, unambiguous answer by the following Tuesday (1st December)
To be honest, though, this was exactly the same information that I was given in September. I certainly didn’t want the same result, which is to say: no surgery. So I decided to really make clear that I wanted surgery. I went over the psychological and physical damage I’d experienced in the time since the recurrence. I said that it really would be in my best interest to have that surgery. Because, after all, secondary tumours can spit out their own secondary tumours at any given time, right…?!
And this is when I got a shock.
This oncologist said that: secondary tumours making their own metastases was extremely unlikely…!
And that just about blew my mind.
Back in 2017, when I was put on Palliative Care, I was clearly told that secondary tumours could generate other secondary tumours. Which left me with the impression that it was for this reason, ultimately, that I was being put on palliative care. In hindsight, it was far more likely that I was put on palliative care because I’d had two serious recurrences in less than a year…
Fortunately, the chemotherapy I had in 2017 took care of that issue, and I was able to move on.
Even so, when I was given the all clear, having finished that course of the chemo, I was told, in no uncertain terms, that I was still getting Palliative treatment. I was not considered curative, and my prognosis was still 2-3 years. Again, the impression I came away with was that secondaries could make other secondaries, and a cascade failure was inevitable at some point.
I think it’s worth noting that the oncologist who told me all this was, and is, extremely experienced and knowledgeable. Her approach, however, was very much one of tightly managing her patients’ expectations. Or, maybe, that’s just how she was with me… Either way, she didn’t want me to be swimming in false hope, and so she was very clear about what my future might hold. She made me aware of the worst case scenario.
And I am grateful for that.
That is certainly how I tend to manage my treatment. I can’t cope with simply hoping for the best. I need to keep myself steeped in reality. Otherwise, there’s a reasonable chance that I’ll snap like a twig, if things go the other way.
Anyway, back to the revelation from the oncologist…
So, if it now turns out that secondaries can’t make other secondaries, then now is the time for me to hear that. At a time when I haven’t had two serious recurrences in less than a year. At a time when I’m getting counselling again…
Because November 2020 saw me start having therapy again.
Or, at least, so I thought.
It turns out that there’s a difference between ‘therapy’ and ‘counselling’. Which is something that I didn’t discover until my second session of, what turned out to be, counselling.
I’d been offered 6-8 sessions of counselling through the HOPE initiative at the hospital. This service is solely for cancer patients and family members of cancer patients. It’s a nice idea. I’d been given the leaflet about the services some time ago, but decided to wait until this latest round of scans, before starting the therapy. I figured that I’d need counselling now, more than at any other time. Particularly if I didn’t get offered surgery again…
I also figured I could use the counselling sessions to help me separate my feelings of depression with my tendency to overeat during such periods. And this would be important, regardless of whether or not I was offered surgery.
I had my first session, by video link, on Thursday 19th November 2020. This initial session was mainly about introducing myself to the counsellor, and her to me. It largely involved me talking about my back story with cancer and where I find myself now. Basically, it was this entire website, in 45 minutes…
The second session was the day after my meeting with the oncologist. A timing that allowed me to discuss my feelings about, once again, being left uncertain about whether or not I would get any surgery. Effectively, it was an opportunity to open up about my feelings and get stuff off my chest.
Except, I have my wife for that…!
And this blog, for that matter.
And it was at this point that I learned about the difference between counsellors and therapists. At least in this specific context.
Therapists, it seems, have training in things like Cognitive Behavioural Therapy (now that I write that sentence, it suddenly becomes very obvious!). Counsellors, however, do not. Counsellors are primarily there to listen to you and help talk through your issues.
The HOPE counsellors are dedicated to cancer patients, so they have expertise and experience when it comes to people like me. If, on the other hand, I want something not specifically related to cancer, like separating depression and eating, then I might need to look elsewhere. I’ll know after another couple of sessions. And, if I do need to look elsewhere, then I will.
But, for now, I’m getting my counselling through HOPE, and I have the feeling that it will be useful in its own right.
Anyway, after that second counselling session on Thursday 26th November 2020, it was just a case of waiting 5 days for the news…
Except I didn’t have to wait that long.
Because, the very next day, I got an email inviting me to a Zoom meeting with my Liver Surgeon on Tuesday 1st December. And surely that had to mean that the surgery was on?! Otherwise why would he want to have a meeting?
That thought process certainly made the next few days a bit easier. While there were no guarantees that a surgery would happen, it was good enough to take my mind off it, for a while. That said, I was still tightly wound up… I certainly wasn’t able to write any posts in those few days. And sleep became very elusive indeed.
Still, I was able to get on with my current home project: planting a forest in the top field. I was actually working with a hired excavator on Tuesday lunchtime, when I got a phone call from the colorectal nurse specialist. Given that I had the Zoom meeting with the Surgeon later in the day, I’d assumed that I wouldn’t get a call from the colorectal nurses. So I wasn’t expecting the call, and very nearly didn’t hear it over the sound of the engine. It was a good call to take, though. It set the tone for the day.
I made reference to the difficulty I was having knowing about the reproductive habits of tumours. The colorectal nurse said she’d ask one of the other oncologists to call and discuss it with me. Someone who is particularly well versed in this side of things. I suggested that, if all my recurrences had spawned from the original primary tumour in my bowel, then there had to be a finite number… I asked whether I was barking up the wrong tree to think I might see an end to this. She said that I wasn’t!
That gave me a lift, I can tell you.
Not, I think, that this exposé was the reason for her call.
No, in hindsight, it seems clear that the main reason for the call from the colorectal nurse, was to check up on my health and fitness. And, having established that I was heavily overweight and not particularly fit, she laid the groundwork to prepare me for the reality that any surgery would probably not be immediate. That the surgeon would need me to be fitter, thinner and healthier than I currently was, to make the recovery quicker and easier.
And the nurse did that job spectacularly well. Before the call, I’d been hoping that the surgery wouldn’t impact on the tree planting that I’d be doing during the week following the 15th December. After the call, I decided that it would probably make sense to have the surgery towards the end of January 2021, to give me time to get thinner and fitter…
Like this was my idea…
And not something that the nurse had planted in my mind and then left to grow…
Oooooo, she’s good!
Anyway, come 6:15pm, and the Liver Surgeon called…
And the surgery was on! Awesome news.
But he does want me to lose weight…
I told him that I could be 18 stone (252lb, 114kg) by the end of January, a weight I’d been during a previous surgery. He nodded sagely and told me that he wanted to do the surgery in 6 weeks time!
Six weeks takes us to the week beginning 11th January 2021. I explained that I couldn’t be 18 stone by then. He just said that I needed to do my best to lose weight. And that I also needed to do daily exercise that was strenuous enough to make me sweat and pant. He wants my fitness levels to be good enough to cope with the surgery.
It looks like it’s going to be a frugal Christmas for me.
Still totally worth it, though.
Not least because of what came next. He said, cool as you like: “Looks like we’re getting to the end of this thing…”
Just like that.
A complete throwaway comment, like it was obvious to all concerned.
So I talked him through the dichotomy I was facing regarding whether or not metastases can make metastases of their own. He told me, “Nobody knows for sure.”
On the face of it, this just makes matters worse. I’ve now got three different answers from three experts:
But then he explained why it really doesn’t matter whether metastases can metastasise. In my case, at least…
Because, for me, my recurrences have definitely been tailing off. I had my third recurrence in 2018, after a break of two years*, and it consisted of two tumours. After another two year break*, in February 2020, I started my fourth recurrence. And this one only has the one tumour. And here we are in November 2020, almost a year later, and the PET scan shows that there have been no new tumours since this recurrence started.
* The two years, here, is between the discoveries of a new tumour. It isn’t the gap between the end of the treatment for the previous recurrence, and the discovery of the next. It’s the gap between when new metastases make themselves known. I hope this makes sense…
The upshot of all this, is that it looks like I might actually survive this thing. Certainly that was the impression of the Liver Surgeon.
And if news like that doesn’t warrant a delay of this November 2020 update, then I don’t know what does…!
Moving forward, then, I do expect that I’ll get another recurrence. Maybe even two more. But the next one might be after a three year gap, for example.
It seems like I’ll be able to walk my daughters down the aisle, if one or both of them choose to get married.
I’d better start working on a speech for each of them, just to be on the safe side. I need to start pulling together all the really embarrassing photos I can find. I think I might even have some embarrassing videos, somewhere…
Additionally, my wife will have to get rid of her eHarmony account. I hope she won’t be too upset, she’s been working on that thing for years now.
In the meantime, I need a new cycle route. Something nice and local but without any significant hills. It’s not that I mind going up the big hills, I just don’t want to be coming down them in the cold and wet, when there are leaves everywhere. The last time I went cycling in the off season was at the end of 2013, which is when I came off my bike and broke my collarbone.
I’d really rather avoid that, this time around.
So that’s November 2020. Some good news about the surgery, followed by some great news about my long term prognosis.
I’m really rather excited!