Speaking of thinking you’re dying, this post is later that expected because things haven’t gone that smoothly this last week. As a result of which, I ended up in hospital. And, as often happens when I don’t know what’s happening to me, once again I found myself wondering, am I actually dying this time?
No, I wasn’t, that was just the pain speaking.
Anyway: context…
In my last post, I said I had time to write another post (this one), before my chemo restarted the following Thursday. Which, as I write, is now last Thursday. Due to a series of unfortunate events, my next chemotherapy cycle now starts next Thursday. Which, as I write, is now tomorrow. Time is not on my side.
It all started on a hot, sunny morning in Portugal. It was Saturday 11th July and we had a flight to catch. I had a spare a Loperamide kicking around, so I took it to ensure there wouldn’t be any urgent trips to the toilet during the journey home. Worked like a charm. We got home and only then was there an urgent trip to the toilet…
So I took a couple more Loperamide.
I no more like sharing this information than you do reading it, but it is unfortunately relevant.
The following afternoon, the situation repeated itself, so did the medication. But, otherwise, the day continued normally.
The next morning, Monday, I felt awful. I had pain under my ribs around the area where the gallbladder lives. If I still had one! A bit of light research revealed that it’s still possible to get gallstones in the bile ducts. Now, that’s a bit of information I really wish I hadn’t uncovered. Monday, then: reasonable amount of pain, a bit of light vomiting and nothing to eat. Just sips of water to try to stave off dehydration. Additionally, as I’d picked up a sniffle on the flight home, I also took some Night Nurse, decongestant medicine. Again, relevant in due course.
On Tuesday I felt okay, so I ate and drank normally. Sure, there was still a bit of soreness under my ribs, but it was better than the previous day. I celebrated with a hearty chug from the Night Nurse bottle.
Wednesday.
Wednesday was terrible!
I woke up at about 4 am with fairly intense pain in my lower to mid back. About where I imagine the kidneys to be. I hoped it just meant I was dehydrated, so I drank the water by my bed and tried to sleep it off.
I failed!
Still thinking it was a dehydration thing, I got up about 8 am and downed a pint of squash. I then started working my way through a second pint. This did not help in any way, shape or form.
Around lunchtime I called the Cancer Helpline*. They told me to report to the Acute Medical Unit (AMU) at the local hospital, Musgrove. I got there at about 2 pm.
* The Cancer Helpline is a 24/7 facility for cancer patients. In this instance, I spoke to a oncology nurse specialist at Musgrove, who said she’d come and see me in AMU. She did, too. Then she liaised with the doctor and consultant for me. She said that I’d need a CT Scan and, unless that revealed an obstructed bowel, I should keep my chemotherapy appointment the following day.
And this is why I have so much trust in, and respect for, oncology nurses and nurse specialists. They’re awesome. Which isn’t to say that other nurses and other medical professionals aren’t awesome, but I never feel safer that when a colorectal nurse specialist is involved.
I got my CT Scan at around 10 pm. I was given the results at about midnight: the bowel wasn’t obstructed. This was very good news because an obstructed bowel would have required surgery. And I don’t want to waste any potential surgeries I have left on an obstructed bowel…
It was also because of this eventuality that I’d been Nil By Mouth the whole day…
All that said, no one seemed any the wiser about why I was in pain, so they kept me in over night and gave me some Oramorph to help me sleep.
The following morning, I was finally given some food…
But couldn’t eat more than a couple of mouthfuls…
The doctor came round and said that, despite not seeing anything obvious on the CT Scan, it could be constipation causing all my issues. I explained that I had a chemotherapy treatment at 2 pm and that if there was any constipation, the side effects would make light work of it.
So I was let home, still in some pain, but less than the day before. Still not really able to eat or drink, and unsure why. But I made it to the chemo appointment…
To be told that a consultant from the hospital had called in and cancelled it.
In truth, I wasn’t in the best state to start chemo, so it was probably for the best. I do wish someone at the hospital had thought to tell me, though.
All of which left me at home, with an extra week of grace in which to write a post, but no clue what was going on.
Naturally, I hit Google almost immediately. And I think I found the culprit: Gastroparesis. This loosely translates to, stomach paralysis.
Guess how Loperamide works? By using opioids to imitate stomach paralysis.
Guess what the active ingredient in Oramorph is? Opioids. Which is why the main side-effect of morphine is constipation.
And do you suspect that there is a component in Night Nurse that does the same thing? Damn right there is!
Naturally, when I suggested Gastroparesis to the oncologist, yesterday, he just looked down his nose at me. But did he have any better solutions? Any diagnoses at all, in fact? He did not.
I have kept myself to a low-residue, gastroparesis-friendly diet since I left hospital. And somehow, by sheer coincidence no doubt, I’ve had no further loss of appetite and no recurrence of the pain.
Which is why, today, I can write…
One good thing from this experience, is that I’ve lost a stone of weight (14 lb, 6.5 kg). And, as I mentioned in the previous post, I need to lose weight to be able to make the most of any future holidays. Oh, and to prevent myself dying of a stroke or heart attack during treatment.
In the past, I’ve lost weight by replacing two meals with bowls of porridge. And, while this has been effective, I never want to see a bowl of porridge again in my life.
So I took the calories that the porridge meal amounted to: about 400 at this weight*. I then used this total to build a potato based meal that was easy to batch prepare, to get round chemo-induced lack of mobility.
* As my weight reduced, so did the size of the bowl of porridge. As, indeed will the quantity of each ingredient that will go into this meal. The proportions will, however, remain constant.
The meal plan is:
- 200 g Boiled potato (170 cal)
- 100 g Boiled egg (150 cal)
- 50 g Roasted pepper (20 cal)
- 50 g Cucumber cubes (10 cal)
- 50 g Apples cubes (26 cal)
- 15 ml low cal dressing (12 cal)
This gives me about a pound of food for about 400 calories. Boiled eggs and boiled potatoes should last a week in the fridge. I discovered you can buy jars of roasted peppers in brine, which was a great help.
Have this twice a day, with the main meal being the family meal, of an evening. Should mean that I’m never hungry enough for the nausea to overwhelm me.
Should work a treat.
With luck I’ll get myself back to, or even below, the weight I was when all this started…
[Wow! A more awkwardly shoehorned segue, you’re never likely to see!]
Ahem!
Which brings me neatly to my mindset during this last 18 months. And how it is, dealing with thinking you’re dying.
And make no bones about it, since I was told I had, “months to low years“, I’ve certainly been thinking I’m dying.
On July 1st 2025, I made a post entitled, ‘How My Lonsurf Chemotherapy is Going‘. At that stage I’d had 3 cycles of treatment and was awaiting scan results before starting the 4th. The meeting for which actually turned out to be the following day…
For, on the 2nd July 2025, I was told that the scan showed, “a partial response to the treatment which is excellent.”
I had been due to start the 4th cycle before then, but low white blood cell counts delayed matters. Which is why the next line reads, “I have dose reduced the lonsurf to try and reduce further delays.”
Huh! I’d forgotten that had happened.
The net result was that I had an ‘excellent’, ‘partial response’, which had resulted in a shrinkage of about 5%. But the impact on my body was so severe that they’d had to reduce the dose…
Because, while a reduction of 5% might seem ‘excellent’ to an oncologist, it doesn’t strike me as a big enough move. After all, if something shrinks 5% every three months, how long before it disappears altogether?
[Just in case someone is going to dive into the maths, please consider that the second 5% reduction might be of the new size, not the original…!]My point being that, from my perspective, 5% reductions were never going to wash the tumours away. Least of all, after the dose had been reduced. As you can imagine, thinking you’re dying seems an inevitability at this stage.
So, it was with little surprise when, 3 months later at the next meeting, I was told, “CT shows stable disease.”
The oncologist then said, of me, “He was a little disappointed that it has not shrunk any further again…”
A ‘little disappointed’, you say…?
Sure, let’s go with that!
This was November 2025.
My next set of scans would be in January 2026. I think you will understand my reasoning when I point out that I fully expected the January scans to show further growth in the tumours. To which end, I was under no illusion that this would be my last Christmas. The only question I had was whether or not I would make it to my next birthday, in September. I resolved to try and make this Christmas as good as it could be, despite me being on chemo over it. Then, in the New Year, I’d start seriously thinking about dying.
I dealt with all the online crap pretty quickly. Deleted things like LinkedIn. Stopped my magazine subscriptions. Unsubscribed from the various holiday websites that I liked to peruse. You know, the easy admin stuff.
Then came the more difficult things…
When you’re thinking about dying, what happens to your remains is quite important. I had been toying with being cremated and my boxed ashes being interred under a tree in the field. But that only works if the family stays in this home forever. What if, in the decades remaining to her, Julie chooses to move? How would the girls be able to visit me and talk about how their lives are going?
Interred ashes on the land wasn’t an option, which means I needed a burial. So I contacted the parish church. Mainly to check whether is was okay for an atheist to be buried there…
Turns out that the Church doesn’t care what you believe. So long as you live in the diocese, they’ll bury the hell out of you. Which is great, because the cemetery overlooks the house and, so, will always have meaning to anyone who visits.
That, however, brought me on to another consideration when you’re thinking about dying: the cost of the exercise.
And I wanted to deal with as much of that as possible, to avoid Julie having the burden. So I cashed in the tax-free element of my pension, giving me the necessary funds. Sometimes, having a terminal illness has its perks…
So, when I went to that oncology meeting in January, I was ready for anything.
Or, as it turned out, almost anything…
His recent CT scan showed a decrease in the burden of disease within the liver and abdominal lymph nodes, which he was pleased to hear.
Which is a long-winded way of saying that there was a 25% reduction in tumour size.
My gast was well and truly flabbered!
I was also pleased.
It’s worth noting that I have had another set of results since this, which showed the tumours as being stable again.
I might also mention that I’ve put thinking about dying on the back-burner for a bit.
This year has been a real roller coaster. From thinking I’d be dying before the end of the year, to realising the tumours are now smaller than they were when I was told, “months to low years”.
Which isn’t to say that I don’t still have arrangements to make. I do.
But not today.