After my first recurrence, in November 2015, and the surgery that followed it, I was actually able to have something of a pleasant Christmas. Which was just as well because my first cancer related meeting was scheduled for 6th January. At which point the specter of my second bowel cancer recurrence raised its ugly head.
The meeting on the 6th was with my oncologist and it was a scheduled meeting that had been arranged six months ago. Long before there was any knowledge of a recurrence, let alone a second bowel cancer recurrence. But we decided to keep the meeting, not least because I was keen to discuss the chemotherapy options following the surgery. Given then my original treatment involved both surgery and chemo, I was expecting the recurrence to follow the same course. I’d had my surgery so next came the chemo. The oncologist, however, had other ideas.
I’m going to include quite a long section of my journal, rather than rewriting everything. It’s the truest reflection of my thoughts on this matter:
“We then discussed what I wanted from this meeting and I said, just to know what I could expect from the coming year (talking about the type of chemo I could expect and how long it would last). [The oncologist] didn’t seem to understand my meaning. Instead she got quite flustered, explaining that; after two bouts of cancer so close together, that another bout was more likely. But that I was cancer free at the moment and that no one could predict the future.
I found this quite shocking, she seemed to think that I was asking about my chances of surviving the coming year. She didn’t even seem confident that would happen! Before she could freak me out any more, I explained that I wasn’t asking that because no one could know that. I was just asking about chemo.
Then it got worse. She explained that because the chemo had been more or less ineffective on me, there was no point in doing another three months of it. I tended to agree and asked about alternative therapies. She explained that there was only one other type of chemo that had proven to be effective but that it wasn’t really for now. It was for the end [after a second bowel cancer recurrence]; when the metastases became inoperable. The other chemo would be used to extend my life as much as possible.
So, that was it! There are now no medicines between me and other recurrences. They only thing to do is hope that if, and when, recurrences happen, they are caught quickly enough and are operable. Surgery is now my only line of defense. She did say that I was still being treated as curative. She also reiterated that, as things stood, I was cancer free.”
That was a meeting that clanged against my mind. I went in expecting to discuss when my chemo would start and how long I’d be on it. But I came out of it feeling doubtful as to whether I would survive the year. I also had a pretty dim opinion of the phrase, ‘cancer free’!
The lack of chemo did, however, open up my options for the rest of the year. As soon as my wounds healed, I could get back on the hockey pitch. Also, as I wouldn’t be spending the next three months feeling sick, we could be skiing.
I’d also be able to get my stoma reversal at some point in the Spring, which would deal with that particular aspect of my life. Of course, it wouldn’t be before the February half term. Which meant I would have to go skiing with a colostomy bag. This promised to be… interesting!
Fortunately, I had a meeting arranged with my bowel surgeon on the 14th. As such, I didn’t have to wait too long before being able to discuss the stoma reversal options. But then, that meeting didn’t go quite to plan either.
The bowel surgeon suggested to me that the date of the reversal was entirely in my hands. I explained that, while that was great; I really needed some more information before I could make such a decision. Namely: did I have enough time left to justify giving up the time it would take to recover from the reversal surgery.
You know what? I’m going to refer you back to my journal:
“I explained that I reckoned that a reversal would take about two months out of the remainder of my life. He suggested less but took my point. I went on to say that if I only had a year to live, losing two months was not worth the time.
If, however, I had two years to live, it was.
I then pressed him for the likelihood of my surviving two years and he was hugely reluctant to answer. I, though, wasn’t accepting a fobbing off and really do need to know my probabilities to make a decision of a reversal. In the end I browbeat him into an answer which was: I’ll probably be alive two Christmases from now and if I am, I can buy him a pint.”
Which seemed fair.
It also means that I owe him that pint…
So, having been presented with a potential life expectancy of about two years, Julie and I discussed it and figured that we needed to make the most of the available time. To that end, I decided that I wanted the reversal in April, scan results allowing. This would be after our proposed snorkeling holiday over Easter and before anything we might do in the summer. It was time to start cramming in those memories while the opportunity was there.
I conveyed all this back during a phone conversation with one of the colorectal nurse specialists. She had called me, at the bowel surgeon’s insistence, because he, the bowel surgeon, was worried I wasn’t getting enough support.
Reading his notes from that meeting, I can see why he might have felt that way:
“Paul attended for review today along with his wife. We have had a lengthy chat about bowel cancer, liver metastases, stomas, long-term survival and the meaning of life. Paul feels that he really doesn’t want to die in a year with an odd number in it, so his aim is to make it at least to January 2018.”
On that note, to avoid odd numbers, now I need to hang on for another two years. I’d love to be able to tell you whether that’s going to work out, but I don’t have 2020 vision!
With regard to the ‘meaning of life’ reference, I have spent quite some time reflecting on this, over the last few years. But, it’s too convoluted to go into here. I may well cover this in another post.
On the 19th, I had my follow-up meeting with the liver surgeon… January 2016 really was a hectic month, in terms of cancer related meetings. Anyway, the liver surgeon agreed with the decision not to do chemo. From his point of view, chemo made the liver ‘fatty’ and, therefore, surgery more difficult. He was keen to emphasise, much as the bowel surgeon had before him, that I still had plenty of scope for additional surgeries. Providing any future second bowel cancer recurrence metastases were operable, they were both willing to hack away. Which was hugely reassuring to hear.
Following the meetings with the two surgeons, I had my next two scans. An MRI on the 23rd, and a CT Scan on the 2nd February. Then it was just a case of surviving the wait until the meeting with the oncologist on the 10th.
Those weeks were, as ever, full of nerves and stress. Despite the knowledge that my surgeons were still willing to operate, any metastases that appeared in a second bowel cancer recurrence, still had to be operable. And I had no way of knowing, or even predicting, the likelihood of this. But, having been left with the impression I was down to a couple of years, it seemed logical that, sooner or later, there were going to be some that were inoperable. All of which, going round and round in your mind, is not particularly conducive to a good night’s sleep.
The meeting on the 10th, which was to report back on the scan results, while not conclusive, was simply terrifying.
I was told that there were three or four areas of concern and that they, the medical professionals, were ‘very worried’. Which, I think we can all agree, is not something you want to hear your oncologist saying. She did, though, emphasis that my liver was ‘very difficult to read’, so it might not be a second bowel cancer recurrence. The problem was, that the results needed to go to Bristol to be seen by the liver team. Which met on Fridays. This then needed to be discussed by the Bowel team. Which met on Mondays. By which time, we’d be skiing.
And, although the oncologist was saying that a three month course of the other type of chemo was likely the best option, I wouldn’t know for sure until after the skiing trip. Which meant getting in the holiday mood would be a challenge for both Julie and me. Not so much for the girls because, once again, we’d decided to keep all this from them until we had definite news.
It was during this time that I came to an important realisation:
“I am finding myself thinking of this whole process in a different light now. Until now I’ve always expected this battle with cancer to be something that I will get past and be able to look back on as a discreet incident. I now find myself thinking that this is all going to run together to be the lengthy battle at the end of my life. I didn’t realise it at the time, but the process I started almost two years ago to the day, was the beginning of the end.”
As you can imagine, this was not the ideal mindset to be enjoying a skiing trip.
On the return from the holiday, there was a letter inviting me back to see the oncologist on the 24th. Because there was no talk of a PET/CT scan, I actually started to get my hopes up there, for a while…
As it turned out, there was no need for a PET/CT scan, because the ‘areas of concern’ were so obviously my second bowel cancer recurrence. Which brought me down to Earth with a bump. And that was only the beginning of the nightmare, that turned out to be the meeting of the 24th February 2016.
For a start, the metastases weren’t just back in my liver; there was also one in my lung.
For another thing, tumours in more than one organ effectively removes surgery from the table.
Which meant, finally; I was no longer being treated as curative.
I was now on palliative care.
And so, with this second bowel cancer recurrence, it wasn’t a question of whether I would die. It was simply when I would die.
This is, again, a very difficult thing to hear. And to take in. The oncologist explained that, ‘on average, patients in my circumstances can expect to live another two to three years.’
So, there it was because of my second bowel cancer recurrence, I was predicted to die at some point between February 2018 and February 2019. It’s worth noting that, as I type this, it’s October 2018…
The plan was that I’d start a full course of the alternative type of chemotherapy within the month. You know, the one I mentioned above. The one used to ‘extend my life as much as possible’. Just how much fun this chemotherapy treatment for my second bowel cancer recurrence was, will be the topic of my next post.
In the meantime, the news was definite enough to have to tell everyone. I won’t go into just how awful it was to pass all this on to my daughters, parents and brothers; you can use your imagination. Instead I will share the way I announced it to the world:
“Well, the cancer’s back in my liver again and this time it’s brought friends; it’s also in my lungs. Now that it’s colonised another organ my care goes from Curative to Palliative. The probability is that I’ve got two to three years left, so expect me to try and borrow large sums of money in the run up to Christmas 2018!”
The main reason I mention this is that, well; it’s coming up to Christmas and I find myself a bit strapped for cash…