Still Alive and (not) Kicking

In March last year I wrote a post entitled (500) Days of Life. In this post, I talked about how long I had left to live, based on the conversation I’d had with the oncologist. I worked out that “months to low years”, was 500 days… Which actually came due on 6th June 2026… Yet here I am, still alive and kicking.

Let me explain how.

Simply put, I’ve had 13 rounds of the bevacizumab and lonsurf treatment, and it’s working a lot better than expected. Seriously, in the last meeting I had with an (admittedly very young looking) oncologist, he was practically giddy with excitement that the Lonsurf was actually doing something!

This meeting was last week, by the way.

And, to be fair to this guy, other more experienced oncologists and consultants, alike, have been visibly pleased with my response to the treatment. So, please understand, I’m not trying to throw shade at the man. It could have quite literally been the first time he’d seen a patient with a positive outcome from Lonsurf. I was happy to help.

A brief side-note. When I was first diagnosed with this cancer, way back in 2014, there were only two chemotherapy treatments:

1. Oxaliplatin and Capecitabine.
2. FOLFIRI.

Lonsurf has been added as a third line of treatment in the intervening years, which turned out to be very useful for me. And, more recently, another option has been approved by NICE*:

• Fruquintinib (Fruzaqla): Recommended by NICE as a targeted therapy at third-line or later for adults who have exhausted standard chemo.

* NICE is The National Institute for Health and Care Excellence, the body that approves, or denies, which treatments are available for use by the NHS.

Now, I know absolutely nothing about Fruquintinib. I also have no intention of investigating it, while Lonsurf is still keeping me alive and kicking. That said, I have to assume that Fruquintinib is likely to be less effective than Lonsurf. And the reactions of the various oncologists to my response to Lonsurf, lead me to a logical expectation…

That, however, is a problem for future Paul.

My point is that two new treatments have been added in the last decade. Therefore, the longer that Lonsurf keeps me alive and kicking, the higher the chance that something more effective will be added to the mix.

Right now, though, I want to refer back to the Paul of a year ago, who’d just written a post entitled, How My Lonsurf Treatment is Going. In this post, I made reference to the extent of the chemobrain the Lonsurf was giving me. I was optimistic that there would be a brief window between treatments where I might feel able to write.

Paul of a year ago was a fool!

As another aside, and roughly coinciding with this last post in July 2025, the ability to make comments on this site appears to have disappeared. While I wouldn’t have expected many, if any comments, Spam seems inevitable. Yet for the last year, the site hasn’t been Spammed once. I passed this on to the company who deals with such things. They have since assured me that the error has been fixed. So, if anyone has tried to comment in the past year, please accept my most humble apologies…

I do, however, feel obliged to point out that since this issue has been ‘fixed’, I still remain resolutely Spam-free. And, sure, I was told that better Spam filters were also added, but still.

As such, if anyone tries to comment, but finds themselves unable, and has the means to do so, please contact me via a different route so I can be disappointed with the people managing the site.

Okay, on to the good bit:

All the weird medical stuff that’s happened in the last year…

But first, I need to address how I’m able to make this post. Bear with me, it’s relevant, I promise.

The simple truth is that unless there’s a longer break between treatments, I don’t have the mental strength or stamina to write a post. And the only reliable time that there’s a meaningful break between treatments is when I’m on a family holiday.

So, the posts I made last March were during our, once in a lifetime, trip to Mexico. The post I made in July was during our trip to Mallorca. And, yes, this is being written during a cheeky getaway in the Algarve. The question then becomes, “In keeping with the pattern, didn’t you go away in March this year?”

Yes! Yes, we did. Which leads us back into the good stuff…

In my post about how the Lonsurf treatment was going, I mentioned that taking too much Gaviscon led to a response called acid rebound. In essence, the stomach gets used to the calming influence of the antacid. Then it decides to overcompensate, leading to some quite intense vomiting.

Naturally, I learned from that lesson and stopped taking Gaviscon. What I didn’t know at the time of my March 2026, once in a lifetime, holiday to Sharm El Sheikh, Egypt, was the direct mechanism that resulted in acid rebound.

But I was about to learn, Oh, yes!

On day two of the holiday, I started throwing up.

So much so that I couldn’t keep down any of the many, many anti-nausea medications I’d taken with me to combat just such an occurrence. Towards the end of the day, I finally worked out that I was only actually throwing up after I’d taken additional medication. You know, in the hope that I’d be able to eat again sometime soon.

All of which reminded me of a situation I’d experienced whilst in hospital, fairly shortly beforehand, which I’ll come on to next.

So, I inspected the only constant that existed when I was taking my medications: the bottled mineral water I was washing them down with. Which, because we were staying in a posh resort, was an equally posh brand of bottled water. I checked the minerals, which were thankfully also listed in English, and one of them, Magnesium, stood out.

In my previous studies about how Gaviscon can mess you up, I remember seeing repeated references to Magnesium. And, sure enough, the bottled water was chock-full of Magnesium. I was, in essence, allergic to the only drinkable source of water available to me…

Sometimes all you can do is laugh.

Thankfully, we also had access to carbonated soft drinks. However, since starting the Lonsurf, I’d stopped drinking carbonated drinks, as they had the tendency to inflate me like the Goodyear Blimp.

While not ideal, this would at least keep me alive and kicking.

I found that if I shook the fizz out of them as much as possible, then let them stand for a while, I could keep hydrated without too many explosive side effects. Better still was the discovery that the bars had Schweppes Soda Water, which I was eventually able to get stocked in the room. This was both less fizzy and less calorific than the typically full sugar Colas and Fanta.

Mischief managed!

A quick note: should you find yourself in a similar situation, it has to be Schweppes Soda Water, not the Schweppes Tonic Water. For the Tonic Water contains Quinine, and Quinine acts exactly the same way on your stomach as Magnesium does.

I do these experiments, so you don’t have to!

Anyway, the reason I didn’t write any posts during my March holiday is because I spent an impressive amount of the available time either battling nausea, or one of a variety of other issues.

The other issues were not directly cancer related but might be of amusement…

For example, we went on a snorkelling trip and, naturally, they didn’t have flippers big enough for me (or a wetsuit, for that matter). Anyway, when swimming against the current to get back to the boat, I used front crawl to keep up with the group.

What I didn’t know at the time, as I smugly thought, “Well, at least I can still swim okay”, was that my technique sucked and that I could not, in fact, ‘swim okay’. I did, however, get to spend the next two days learning about the terms, ‘swimmer’s shoulder’ and ‘shoulder impingement’, as well as the associated pain.

I’m not even going to dwell on the issues I had trying to find a comfortable sleeping position, or how many nights I had to sleep sitting up in an armchair. Suffice it to say: I didn’t have the capacity to write a post.

Right! Moving on…

I while ago, I indicated that the process of learning that I couldn’t drink the water, reminded me of a trip to hospital. The exact timings of said trip escape me and, because I’m in Portugal, I can’t refer to my notes. But it was probably sometime in January, so let’s go with that.

In January, I started throwing up and couldn’t work out how to stop it. So I called 111* and was told to present myself to the Acute Medical Unit (AMU) at my local hospital, Musgrove Park: they would be expecting me. The AMU is a step down from Accident and Emergency (A&E), or the Emergency Room (ER), for it involves none of these things. It’s for people who’re messed up but not immediately, dangerously so.

* 111 is the number you call for non-emergency medical issues. If it’s an emergency, call 999.

Once I was settled in AMU, I noticed a pattern: I was only vomiting after I’d taken my medications. Typically speaking, I take three sets of medications each day, and there was only one medicine that was common to all three: Cyclizine.

Cyclizine is a standard anti-nausea medication that is low level and widely used. I was typically taking it three times a day to, ironically, keep the nausea at manageable levels, thus improving my quality of life. After the second time I took Cyclizine in the AMU and then immediately vomited, I mentioned it to the nurse. The nurse, naturally, deemed this unlikely and wanted to check for themselves…

So, the third time around I was started on a slow IV dose of the Cyclizine, which was ended when the hurling restarted. At this point I asked to be put on Domperidone (a similar low level anti-nausea med) instead, and I’ve been on that ever since. Inevitably, I find myself wondering if the Domperidone will eventually take me down the same road as Gaviscon and Cyclizine. But that strikes me as being another future Paul issue.

And that was it for detective related issues.

The one other medical thing of note was blindingly obvious!

After one of my IV Bevacizumab sessions, probably towards the end of last year, the relevant vein in my arm went rigid. After checking with 111, this one warranted a trip to A&E, where, again I was told they would be expecting me. I got there about 8 pm. The wait turned out to be 8 hours.

This is an observation about the reality of the situation, not a complaint. I had my Kindle, I was fine.

When I was seen, I was told it was probably a Deep Vein Thrombosis (DVT) in my upper arm. The doctor gave me some blood thinners as a precaution, to keep me alive and kicking while waiting for confirmation. I was also told to report to the Medical Day Unit (or some other unit that I hadn’t known existed before that time… and, in reality, technically still don’t!), at 8 am that same day.

So, after a brief snooze, an Ultrasound confirmed that it definitely was another DVT, and the first in my arms. I would also need to add blood thinner tablets to my daily regime. A vast improvement on the Clexane I’d had with the leg DVT. Said Clexane had needed to be injected into my stomach blubber and built up some genuinely colourful bruises, over time.

The final issue, which is more physical than immediately medical, is my weight and general overall fitness.

In my March 2025 post talking about how my body was coping, I described my pre-diagnosis body as, “a huge, blubbery, unfit mess…”!

Oh, what a sweet, summer child that past Paul was.

I mean, he wasn’t wrong, but there are levels to this thing…

The intervening two years have not been kind to me physically. I’m back over 22 stone (141kg, 311lb) for only the second time in my life. The previous time was at the end of a chemotherapy treatment and marked the point that I started getting myself fit and healthy (ish) again.

This time, hitting this weight just coincides with the one-year anniversary of starting my Lonsurf regime. And this treatment is programmed to continue for, what amounts to, the rest of my life…

If I keep putting on weight at the rate I am, a stroke or a heart attack will finish me off before the cancer can.

Changes need to be made to keep me alive and kicking.

I’m going to try and diet to lose some weight after this holiday. I just won’t be able to do any accompanying exercise. I simply don’t have the energy!

The biggest hurdle in the way of the diet is the nausea. When I’m physically taking the chemotherapy (11 days in every 28), feeling hungry increases the impact of nausea to the point I can’t function. This is true of a varying number of days after the chemotherapy as well.

To have any quality of life, I can’t feel hungry.

To lose weight, I must reduce my food intake.

A needle needs to be threaded…

I do have a plan to keep me alive and kicking but it needs more thought. I shall come back to this when such thought has been thunk.

With that in mind, I had intended to talk about my mindset during this last year…

But the reality is that I’ve rambled on long enough.

I don’t start treatment again until Thursday. Which means I have time to fill in the above blanks after I get home.

To finish, then, I want to emphasise that there have been plenty of highs in this last year. It hasn’t just been a series of comedic medical issues.

For example, I’ve now got a regular supply of Aprepitant. This is the super-drug that conquers all nausea. I’m given a pack before each IV treatment. Because of that I can now receive my Bevacizumab in the 30 minutes I’m supposed to. Not in the 90 it used to take me. And I don’t feel sick during the process.

The Aprepitant comes in a 3-pack, and I only use one dose for the IV treatment. So, I have spares to keep me going when things get rough on other days. For example, I’ve taken one today, and here I am, continuing this post.

Access to Aprepitant has resulted in significant quality of life improvements.

But that is nothing compared to the fact that I’m still alive and kicking. And a full month after my (500) days of life ran out, to boot.

The Bevacizumab and Lonsurf is working far better than any of the oncology professionals were expecting, or seem able to believe. This, however, does not mean that the cancers are being washed away. The treatment is largely keeping things stable but there has also been some shrinkage.

I’ll go into more detail in the next post, when I can be accurate with details and timings.

So, what have I learned?

Firstly, I’m done with timetables, no matter how aesthetically pleasing and/or amusing they are to me. Things are too complicated to put a scale to.

Secondly, I can’t just let my weight and health get away from me. Sure, giving both of my brothers hernias, when they try to move my coffin, is a hilarious concept, but it’s not enough. While I’m alive and kicking, I need to be able to make the most of it.

Thirdly, and finally, I’m extremely lucky. I don’t know how or why. I don’t even believe in luck. But I am appreciative that I’m still here. I’m very grateful that I got to spend this extra time with my loved ones. And even more so for the time still to come.