My Fifth Bowel Cancer Recurrence

In my previous post I explained that I started working my way out from under my Bucket List Related Depression by doing projects around the house and grounds. I also explained that while doing work on these projects, I struggled with reflux if I bent or crouched for too long. Finally I pointed out that the annual scans, which were booked for the end of August 2024, would surely reveal if I had anything to worry about. Well, the worry duly started when my meeting with the oncologist, to discuss the results of said scans, was postponed. More concerning still, was that the given reason for the delay was that the Bristol Royal Infirmary (BRI) needed more time to study the scans. And since the BRI only gets involved when I have tumours on my liver, I already knew that my fifth bowel cancer recurrence had begun.

Sure enough, when I next met the oncologist, on the 11th September, I was told there were, “two lesions in the gastrohepatic region”. That’s the intestines and liver area, to you and me. One of the lesions was about 50 mm (2 inches), while the other was a bit smaller. Basically, about the size of a pool ball and a walnut respectively…

Now I understood why bending and crouching led to reflux.

You see, under normal circumstances, the stomach nestles snugly against the liver, without any wasted space. It should also be noted that the liver is a fairly dense and solid organ. Tumours, meanwhile, tend to be very dense indeed. So every time I bent or crouched, my liver shoved the tumours against my stomach, disrupting whatever lay within.

Anyway, back to the oncologist, who also pointed out that my CEA markers had become elevated. Historically, my CEA levels had never been elevated, even during previous recurrences. This fifth bowel cancer recurrence of mine was really starting to worry me.

Finally, I was informed that:

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

The previous imaging, to which this quote refers, was from a full year before…

I’ll get on to this more in my next post.

In conclusion, then, my fifth bowel cancer recurrence was off to a troubling start.

Naturally, the next thing needed was a PET-CT scan to check how active and, therefore, dangerous these two lesions were. I told the oncologist that Julie and I were going on a river cruise from the 30th September and asked whether we were likely to have the results before then. I got the appropriate level of non-committal response that is inevitable when a situation has so many moving parts. In truth, though, the main reason I mentioned it was to try and avoid an appointment while we were on the Danube.

I imagine it goes without saying that the follow-up meeting was scheduled for the 2nd October…

This led to some soul searching between Julie and me. Was it worth cancelling the holiday to ensure that I could start treatment, whatever that might be, as soon as possible? We decided that, no, it wasn’t worth it. Another week wouldn’t make any difference, so I called to reschedule for the 9th.

As it turned out, the hospital postponed the meeting on the 9th until the 23rd October. This was because it was taking ages for the BRI to report back to my hospital in Taunton. Whatever the cause of the delay, I think we would have been quite annoyed had we cancelled our holiday, to get a jumpstart on treatment, only to be put off for an additional three weeks.

Come the meeting on the 23rd, it quickly became clear that the delay had not been a good sign. While I have no idea why the BRI took so long, I like to think it was because they were exhaustively exploring every avenue of treatment. Sadly, though, to no avail. The BRI concluded:

Although there are no targeted treatments at present (we) have suggested systemic chemotherapy and then to reassess

I’ve got to tell you, it really hurt to hear that one.

The one thing that I had really hoped to avoid ever doing again was chemotherapy.

I hate chemotherapy!

I’ve had it twice before. Once with my original diagnosis back in 2014. Then again in 2016, when I was moved from curative care to palliative care. On both occasions I was effectively bed-ridden from the nausea associated with the treatment. As bad, if not worse, I lost my ability to think properly. For me, chemotherapy means being lobotomised and then lying in bed, slowly getting fatter.

Why would you get fatter, I hear you muse?

Because, for me, the nausea gets worse on an empty stomach. So, in order to combat the sickness I need to keep eating. And, because I am too ill to leave the bed, I have no way of burning all those excess calories. Thus, the weight piles on.

Have I mentioned that I hate chemotherapy yet?

Anyway, the question now was which type of chemotherapy to go on…

We quickly ruled out the original chemotherapy from 2014 (Oxaliplatin and Capecitabine), because it hadn’t worked then, so it was unlikely to work now. On the other hand, the FOLFIRI and Cetuximab that I’d had in 2016 worked far better than expected. In the circumstances, then, we opted to go back on the FOLFIRI. Without the Cetuximab, this time, because you can only have that once.

Now, this decision was a gamble, because there is now a third line chemotherapy treatment available for bowel cancer patients. It’s called Bevacizumab and Lonsurf, and it didn’t exist on the NHS in 2016. And while it’s nice that there’s another main line of treatment, there isn’t anything after that. So I wanted to avoid using it, if possible: keep it for the last resort. Besides, the FOLFIRI had worked so well the previous time, that it seemed madness not to give it another go…

On the flip side, however, was that any cancer left in my system had already survived being blasted by FOLFIRI (and Oxaliplatin). This could very well mean that my current tumours were immune to FOLFIRI. To counter this, though, was the fact that my last chemotherapy was more than seven years ago. My cancer could have continued mutating during this time, maybe to the point it was susceptible to the FOLFIRI again.

Whatever I chose, it was a gamble. Still, the stakes were only my life, so no pressure.

On a less facetious note, my initial treatment would be three months of chemotherapy and then reassess. That a reassessment was built in indicated that a targeted treatment, like surgery or SABR, was still on the cards if the tumours shrank. Three months was also a comforting timescale if the FOLFIRI wasn’t effective. Still plenty of time, it seemed, to change course (literally and figuratively) if needed.

And so the treatment of my fifth bowel cancer recurrence started with the fitting of a PICC line. A Peripherally Inserted Central Catheter, is a way of delivering chemotherapy from your arm (on the periphery of your body) via a catheter to just outside your heart (at the center of your body). The PICC line sticks out of your arm and has a port on the end, through which medicine can be administered and blood can be drawn. This saves having to apply a catheter every time you have another treatment. Which is good, because when chemotherapy is delivered through a vein in the back of your hand, it usually wrecks that vein completely. And, after a while, you run out of good, accessible veins.

Much like with heroin users…

For further details, you could watch the film Trainspotting and pay attention to the character called ‘Mother Superior’.

Anyway, I assume that when the chemotherapy is delivered almost directly into the heart, it is so quickly and thoroughly diluted that it can’t do any localised harm. I mean, it’ll still mess up the rest of you, because that’s what it does.

Regardless, the other thing to note about a PICC line, is that it needs to be cleaned every week. As the treatment was on a two-week cycle, every second week the PICC line would be cleaned during the administration of the chemo. Last time around, they showed Julie how to do it, and she did the cleaning in the intervening weeks. This time, however, it needed to be done by nursing staff, which meant a fortnightly trip to the District Nurses at Wellington Community Hospital. I also had to visit the community hospital two days after the IV treatment at the Beacon Centre. This is because the treatment finished with a ‘pump’ that kept pushing chemotherapy through the PICC line for another 48 hours.

My fifth bowel cancer recurrence really was shaping up to be a doozy…

And at this point I seriously started wondering whether this was just another chapter in the ‘Living with Cancer’ series…

Or the opening salvo in the third and final part of the Trilogy, ‘Dying with Cancer’. To be fair, my mind has always wandered to this question when I have another recurrence.

I can’t help it: my mind’s gonna mind!

Anyway, I was given a treatment schedule, the first of many, which said my PICC line fitting was on the 4th July…

And my first treatment, my first dose of chemotherapy, would be the very next day. Yes, treatment for my fifth bowel cancer recurrence started on the 5th of July. Yee-haw!

To be honest, the first dose was pretty easy to handle, nausea-wise. I was given Aprepitant, a serious anti-sickness medicine, to take over the three days of chemo administration. I was also given Lansoprazole, which protects the lining of the stomach and cuts down on reflux. And, for a while there, I actually thought I’d be able to function during chemotherapy…

Maybe my fifth bowel cancer recurrence was going to go smoothly.

Sadly, this turned out not to be the case.

I felt sick after the second treatment (22nd November). I felt sick during the third treatment (6th December). Towards the end of the fourth treatment (20th December), I had to ask for a sick bowl, because I was close to dry-heaving. And in the fifth treatment (3rd January), in a room with three other patients, I was dry-heaving. I managed not to vomit, either in the hospital or during the car-ride home, I’m still not sure how.

The problem was that my nausea levels didn’t improve after the pump came off. I also started developing a severe pain in my left shoulder. I don’t know what it was, but it felt like the sort of referred pain I got after liver surgeries. This type of post-surgical referred pain is caused when the leftover Nitrogen (from when you’re inflated for a key-hole surgery) pools on the underside of the diaphragm.

A couple of days later, long after the chemo had been administered, I just started throwing up. It went on for the rest of the day and much of the night. I called the help line and was told to come in for a shot of Nozinan that day, which certainly eased my symptoms.

Until that night…

I woke up the following day in such agony I was struggling to breathe. I called the help line again and was told to go to A&E (Emergency Room, Ward or Department). Here I was scanned and monitored but there was no clear reason why I was feeling this pain. I was advised to go on to oramorph for the pain and give it time…

So I did.

I also slept in the Living Room, sitting up on the sofa. After a week or so of this, the pain had passed. And, thankfully, has not returned.

All this, however, took me past the date for my sixth treatment, which was supposed to be on the 17th January. The oncologist said that I should just skip a cycle and go from there. This did, though, allow me to have the three-month CT and MRI scans. I had those on the 20th January. I also had an appointment with the oncologist lined up for the 22nd January, which seemed far too close to the scans for them to have the results…

Still, I reviewed my notes, in preparation for the meeting, and noticed something odd. My most recent treatment schedule, which had been printed on 2nd January, listed a treatment booked for 31st January. Given that the treatment which had been scheduled for the 17th January would be my 6th and final of the original three-month run. This treatment on the 31st would be a seventh…

This print-out was from before I ran into all the trouble with the nausea and referred pain. There was no mention of a three-month review to see if the scans indicated I could start targeted treatment…

This was not at all what I was expecting…

It was not what had been discussed…

The oncology meeting on the 22nd January seemed likely to be a turning point in my fifth bowel cancer recurrence.