(500) Days of Life

In my last post, where I learned about my 5th bowel cancer recurrence, I finished by saying how important the next meeting with the oncologist would be. And so it turned out. Because, in that meeting I pressed the oncologist for an estimate of my life expectancy and was told, “Months to low years”. This is too broad for my taste so I’ve since resorted to maths. I assumed that ‘months’ would be anything from 1 to 12, which I averaged to six. Low years could only really be two, so… There are 182 days in six months and 730 in two years. The average of these figures is 456. Naturally that would never do, when there is a movie title so close to referencing. And so I can tentatively announce that I have 500 days of life.

Which started on 22nd January 2025, when I had that meeting with the oncologist…

Now, I was going to post this on Wednesday 5th, but then I checked the numbers. You see, by leaving it to Friday 7th, it means that my 500 days of life is back down to the original calculation of 456. And that only seems right.

By now, you may be wondering how I can be so flippant. Well, there are three reasons:

1. I remember quite liking the film, (500) Days of Summer, so it is nice to give it a call back.
2. The way Geopolitics is looking at the moment, there’s a very real feeling that I’m simply leaving early to avoid the rush.
3. I’ve been here before!

After I had my second bowel cancer recurrence, back in 2016, I was told that my life expectancy was two to three years. The average of 730 days and 1,095 days (3 years) is 912.5… (1,000) days of life!

Now, this estimate was made almost exactly 9 years ago, which is the equivalent of 3,287 days. And I think we can all agree that 3,287 is more than 1,000. This is, of course, the very reason that oncologists and, I imagine, medical professionals in general, don’t like answering the question, “So, how long have I got left?”

Because, imagine if the estimate had been that far out, but the other way…

And that absolutely could have happened, would have happened, if the chemo didn’t work for me.

Long story, short: don’t press for an estimate of life expectancy unless:

1. You need one for your own mental wellbeing, and
2. You completely understand that it’s only an estimate, which cannot be held against anyone if it turns out to be inaccurate.

Anyway, the most important thing is that I now have a whole other regimen of chemotherapy to try. Last time I was in this situation, the chemotherapy (FOLFIRI and Cetuximab) worked much better than expected. This time I need the new chemotherapy, Bevacizumab and Lonsurf, to do the same thing. There’s no reason why lightning can’t strike twice… Right?

Except, the circumstances are quite different this time around.

Last time, I had two tumours that were fully enclosed in the liver. They were completely self-contained within liver tissue. I’m not sure why this is important but I suspect it is. It is certainly important when it comes to decisions about surgery, which I will cover in detail in another post.

For the time being, then, let’s get back to that meeting with the oncologist.

Long before we talked about 500 days of life, we talked about what the most recent scans had to show…

After five of the six available rounds of chemotherapy, I was told that my “disease is stable”.

This meant that despite nearly three months of nausea and brain-fog, the chemotherapy had had no impact on the tumours. Basically, the FOLFIRI had not worked for me this time. To be honest, as I’ve mentioned previously, this was not that unexpected. I’ve had FOLFIRI before, so any cancer left in my system must have survived the last time I was treated with it. And, therefore, should now be immune to FOLFIRI.

Hearing it was still hard, though.

I’m going to copy out the next part of the notes to give you context of how baffling these meetings can be.

I note from a PET scan he had in September 2024 pre-chemotherapy that he has lymphadenopathy around the celiac axis extending towards the gastrohepatic ligament superiorly and almost reaching the pancreatic bed inferiorly. There was an uptake within section 2/3 of the liver which was continuous with FDG avid soft tissue thickening extending to the medial aspect of the left diaphragm. A tissue plane with adjacent gastric cardia was not identified.

Got all that?!

Now I’m pretty well educated, including an A level in Biology. Additionally, I spent several years as a Combat Medic in the British Army Reserves. And, on top of all that, I’ve been dealing with bowel cancer and liver tumours for more than a decade…

But, I have no clue what much of that is trying to say. Sure, Google helps, but only about as much as the lack of punctuation hinders…

What I do know is that it isn’t good. For example, hearing that the cancer is stretching towards the pancreas is bad. The pancreas is important! Also, discovering that there is thickening of the diaphragm can’t be good: I use that to breathe…

Anyway, you get the picture: I’m in a bit of a pickle.

In essence, I currently have two tumours. The first one is protruding from the liver into the abdominal cavity. The second one is located around the lymph nodes in the vicinity of the first tumour. And, unlike the tumours in 2016, these current ones are not constrained by the liver tissue. In fact they’re not constrained at all. And, by George, they seem to be making the most of the situation…

Which, naturally, leads to the question, ‘where did this first tumour come from?’

Well, it seems to be the liver metastasis that I first mentioned in February 2020, The one that I:

• Wasn’t able to get surgery for in early 2020 because of the COVID lockdown.
• Did get SABR radiotherapy for, during May 2020.
• Was scheduled surgery for towards the end of 2020.
• Had the surgery cancelled on, when the surgeon became ill.
• Was moved on to another surgeon to operate.
• Had the surgery cancelled on again in March 2021, when a PET/CT scan could find no trace of the tumour.

All of which amounted to one Hell of a rollercoaster ride.

But even without any surgery, I knew that the follow-up for SABR Radiotherapy involved scans at: 3, 6, 12, 18 and 24 months. So I knew I’d be closely monitored. And I was, and all was going well. I had regular scans and meetings with the oncologists…

Where I continued asking awkward questions…

Like a meeting I had with one of my former oncologists (who’s since changed role) in March 2022. The oncologist was talking about the future and said something like, “So, when the cancer comes back…”. I forget the exact context, but I queried, “Don’t you mean, if the cancer comes back?”.

To which the answer was, “No!”

In the mind of this oncologist, an absolute expert in the field, there was no doubt that the cancer would return. In fact the oncologist referenced this in the notes from the meeting:

We have talked in brief about prognosis, which is often quoted as being 30 months at the time of irresectable disease.

Again, quite difficult to hear. And even more difficult to process. I was already deep into bucket list related depression at this stage, already having stopped posting on here in October the previous year. Having this spelled out in this way, while potentially important to know, certainly didn’t lighten my mood.

My next oncology meeting was in September 2022. This one marked 24 months from the end of my SABR treatment, thus the end of that aspect of follow-up monitoring. As such, I was moved to annual scans but with blood tests and a oncology meeting at the six month point. One other thing of note is that my CEA levels were recorded as, “a normal CEA of 1.9.”

Carcinoembryonic antigen (CEA) levels can be a useful indicator that tumours of certain types of cancers are present. To quote the Wikipedia page:

Serum from individuals with colorectal carcinoma often has higher levels of CEA than healthy individuals (above approximately 2.5ng/mL).

And, six months later I had a telephone meeting with the oncologist but had forgotten to have my blood taken. As such there was little to discuss during this meeting other than my general health. Which was fine. I had my bloodwork done the following day and a note to this effect was included in the write-up.

Addendum: Bloods unremarkable with CEA of 2.8.

‘Unremarkable’ is not the same as ‘normal’. Given what has transpired, I really wish someone had taken the time to remark, “Hey, his CEA is 50% higher than last time; maybe we should look into this…”

Sadly, this was not the case.

In fact, things headed further in the opposite direction in my next meeting.

In September 2023 I had another face to face meeting with a different oncologist. During this meeting I was told that the scans were fine and that, moving forward, I should only do annual blood tests, to go with the annual scans. In response to questions about six monthly scans, I was informed that I was at greater risk from the radiation from the scans, than I was from a recurrence. The thing is, my scans weren’t fine at all. Although we wouldn’t know it for another year, my current tumours were present on these scans. They had just been missed.

There is no reference to my CEA levels in the report from this meeting.

Skip forward a year to September 2024 and it’s all gone to pot.

The latest scans showed two lesions in the area around the liver and, just to confirm:

In retrospect when reviewed in our Multidisciplinary Team meeting these [lesions] were present on the previous imaging but are now much larger.

I confess that I find this all somewhat frustrating…

In the meeting where I was being told that I was more at risk from regular scans than I was from my cancer, I already had two tumours in me. And the thing is, this would have started with just one tumour. The second tumour seems to be an amalgamation of a bunch of infected lymph nodes spreading into each other and combining. So, at some point, it was just the tumour from February 2020 regrowing itself. But because this wasn’t noticed, one, or more, of the local lymph nodes got involved. And the lymph node(s) grew and spread, again unchallenged.

It just seems so… avoidable!

To go from “It’s not if it comes back but when it comes back,” in March 2022, to “We’ll only do scans every year, now, with blood tests at the six month point,” just six months later, simply doesn’t make sense to me. It was the same oncologist in both these meetings. Why?! If I’d been given a scan at that six month point, it seems very likely that the first tumour would have been visible. Which isn’t to say it would have been noticed…

But, just to remind you, this six-month point, where no scans were taken, was also the point I had the ‘unremarkable’ CEA of 2.8.

I should like to point out that in the past my CEA levels have never really done much. Not even when I’ve had previous recurrences. So, while 2.8 may not be remarkable for most people, for me it seems remarkably high.

As a case in point, the notes from the September 2024 meeting also states: “I also note that his recent CEA level has risen for the first time and is now just above normal at 5.2.”

This CEA of 5.2 is my reading when I have one pool ball sized tumour and another the size of a walnut, both of which are making themselves at home in my abdomen. I think it’s safe to say that a CEA of 5.2, for me, is nowhere near normal.

And again, to be told that I can skip the six-monthly blood tests, while two unnoticed tumours are growing in me, is just… frustrating!

I don’t know why the tumours were missed in the 2023 scans. I don’t understand why someone who was so convinced that I would have another recurrence, would reduce my monitoring. In fact, I’m confused by much of the recent decision-making process…

Like I say, I’m down to 500 days of life and I’m not convinced that it had to be this way. It just strikes me as being so unnecessary.

And, look, I’m sorry to vent like this but I need to get all of this off my chest and out of my mind. If I can get it all down here, then I don’t have to be frustrated by it.

I can move on.

If I really am at the point of having 500 days of life, I don’t want to waste my remaining time focused on misplaced anger and bitterness. I want to be able to focus on the important things, like my family. Hence the need to vent.

Besides, what’s done is done, and can never be undone.

Which is why I wanted to get all this posted long before the end of March.

Because, what do you do when your oncologist suggests you might only have 500 days of life? That’s right: you book a holiday somewhere warm. So, we’re off to Mexico for a couple of weeks…

I’ll send you a postcard.