Progress Update for April 2020

Well, I delayed posting my progress update for April 2020 by a day, because my first SABR treatment was due to be today. I found out, yesterday, that this would not be the case. My first treatment will now be on Friday 1st May, with additional rounds to follow in the coming weeks. But I’ll get on to that shortly. I’m going to start my April 2020 update with the rant I put off from the post, on the Chubby House Hubby site, about how many of my internal organs I can live without. These things are related, I promise…

The reason that I’m feeling frustrated is that, although I will be starting my SABR treatment soon, this remains far from the ideal course of action. All of this ties back to the post I made at the end of March, about the cancer surgeries being cancelled for potential coronavirus patients. If you think I was annoyed then, that’s nothing to how I feel now!

In that post, I wrote:

Four Nightingale Hospitals are being set up, which will have 12,000 beds for Coronavirus patients. 20,000 former NHS staff have returned to help run these, and other, hospitals.

Additionally, the NHS has taken on the Private Sector hospitals, adding another 8,000 beds, 1,200 ventilators and 20,000 trained staff.

That is an awful lot of eggs in one basket!

Since then, the number of Nightingale Hospitals that have been set up has increased. The one thing all of these hospitals have in common is that they’re barely being used, yet, if they’re being used at all. An article in the Financial Times, from April 24 2020, had the following to say:

Seven Nightingale hospitals — named after the pioneering Victorian nurse — have been erected at unprecedented speed across England in recent weeks, with logistical support from members of Britain’s military. Similar facilities have also recently opened in Scotland and Wales. But the majority have only taken a handful of patients.

https://www.ft.com/content/09897050-13bc-4ebe-99af-25b8d2ab5781

Likewise, an article on the BBC website, from 27 April 2020, is titled, “Coronavirus: London’s NHS Nightingale ‘treated 51 patients'”.

I’m not saying that it was wrong to build all these hospitals. I am, after all, a firm believer in the adage, ‘Hope for the best but prepare for the worst.’ What I am saying that you don’t need to stop other treatments while these hospitals lie empty. Sure, if they start filling up, then stop other treatments, but until then…

Okay, sure, the counter-argument is going to be that the reason that the Nightingale Hospitals weren’t being used was that the NHS managed to absorb all the Coronavirus cases. And by managing all these cases, the hospitals were full to the brim of Coronavirus patients, meaning there was no space for anyone else. This, however, is unlikely to be the case. This is demonstrated by reports of fears that seriously ill patients are avoiding going to hospital. Visits to Accident and Emergency are much lower than normal and the NHS is encouraging people to seek treatment if they need it.

But even if the NHS system is rammed, the Government has bought up the private health care system as well. And, I’m aware that parts of the private system are standing empty. Over the course of April 2020, I had the opportunity to speak to one of the Consultants that operate out of one of the private hospitals in Bristol. I asked the consultant directly whether this hospital had seen any Coronavirus patients, and was told no. The private hospital hadn’t seen any Coronavirus patients.

This did not come as much of a surprise to me. The South West of England is not particularly hard hit, in terms of COVID-19. But, why hasn’t this hospital been used to treat cancer patients? And I don’t just mean patients with private health care. I mean, sure, it would have been nice to have my surgery, but there are cancer patients in more desperate need than me…

After all, the Government has taken on all these private hospitals. They’re effectively part of the NHS, for now. Which means that private or NHS doesn’t matter – it’s all a matter of priority. Of triage, if you will. Instead, they stand empty and nobody is getting treatment.

It’s just so frustrating to me.

This frustration is not eased by the announcement from the Prime Minister, Boris Johnson, yesterday, that “some paused NHS England services, such as cancer care, are to resume.”

Then why the Hell was it stopped in the first place, before it became necessary to do so?!

Yes, I’m angry!

Not least because I’m scared…

You have to understand that for someone like me, who has terminal cancer, delays in treatment have consequences. The 35 mm tumour in my liver was picked up in a scan taken on 30th January 2020. My treatment will start more than three months later. In all of those intervening three months, my tumour has been growing. But the growth is not the real problem, it’s the potential for metastases.

Primary tumours have to grow to a certain size and complexity before they can start producing metastases. But the cells of any metastasis are already at this advanced stage, which means they can produce their own metastases, when they’re still small. Metastases can produce other metastases at almost any size…

So you see the importance of dealing with a metastasis as soon as possible…?

For me, this has not been the case.

Furthermore, the treatment I’ll be getting isn’t surgery, which is the best available option. It’s SABR radiotherapy, which is about 80% effective. But, because I have still yet to have any SABR treatment, I will, again, defer discussing the treatment in detail for another month.

I will, however, discuss a couple of points pertinent to the theme of the post. Both of which involve the location of the tumour, in relation to my other organs.

The tumour is very close to the stomach. This means that, under normal circumstances, the treatment would be done under general anaesthetic. Keyhole surgery would be used to allow probes to manually hold the stomach away from the area of treatment. Thus reducing the extent of the potential damage to the stomach. Which is what got me to thinking about which internal organs I could live without…

See, I told you it was all related. On a happy note, my research revealed that I can live without a stomach…!

Not that I’m really expecting to have to. But, still, if cancer surgeries were allowed, I would be having a surgical treatment instead of SABR.

Which brings me on the second point… My SABR treatment was delayed because the doctors needed to adjust my procedure. I don’t yet know what this entails but I do know why they’re having to do it. It turns out that the tumour isn’t just very close to my stomach, it’s also very close to my heart!

My research into which internal organs I can live without, made very clear that my heart isn’t one of them. If the circumstances were different I definitely would be having surgery instead of SABR…

So, now you know the risk to my stomach and my heart, that SABR presents, hopefully you can get an understanding of just how desperate I am to have this tumour dealt with.

I mean, there is the option of just waiting. In all likelihood, if I wait for three, or so, months, I could have that surgery. To be honest, I’m hoping to have a surgery in three or so months as well as the SABR treatments…!

Because what I’m scared of is the number of new metastases that this existing tumour is spitting out. If it’s more than a couple, then I’m going to end up needing chemotherapy. And, as I’ve mentioned before: all the cancer cells that are still in my body are descended from those cells that have previously survived both available chemotherapy treatments for bowel cancer. The cancer cells in me now are highly likely to be immune to chemotherapy.

Which means that chemotherapy for me, at this stage, is a last ditch effort. Merely a delaying action… What seems like the beginning of the end.

I hope this makes clear why I’m so angry and scared, at the moment?

And, this isn’t just me. There will be a great many cancer patients in similar, or worse, situations compared to me. The delays in cancer treatment, instituted as a result of a level of Coronavirus patients that never materialised, will result in unnecessary deaths.

I might be one of them.

If I believed in ghosts, it’d be at this point that I’d threaten that is this does happen, I’ll be coming back to haunt Boris.

But I don’t. So I won’t.

Besides, if I could come back as a ghost, I wouldn’t want to spend my time in the company of a sodding politician, of all things. I’d much prefer to watch over my family.

Hmm, now I mention that, it reminds me that I once wrote the outline of a novella on that topic. If memory serves, it was called, The Family Ghost… Maybe I should find the outline and write it up while I’m recovering from my SABR treatments…

I fear I’ve strayed off track again…

Still, rant over; what else happened during April 2020?

Well, I drove up to Bristol for an appointment that I didn’t really understand, regarding surgery. I assumed it was to tell me that there was no surgery, so it seemed strange to have to drive for an hour to be told as such. On the other hand, I couldn’t get hold of anyone on the phone and I had been trapped in the house for a long time. So off we went: Julie came along to offer moral support, if needed.

10 minutes before we reached our destination, I got a call from the hospital asking if I knew why I was coming to the appointment…

While this seems like a strange question, I’m in both the private and NHS systems, in facilities based out of both Taunton and Bristol. Breakdowns in communication are entirely possible. It turned out that this appointment was the one made in case SABR wasn’t an option. As SABR was an option, the appointment had become unnecessary. So we turned around and went home.

It wasn’t an entirely wasted trip, though. The return route took us past a plant nursery/farm shop, one of only a very few that are still open during the lock-down. So we took the opportunity to pick up some plants and grow-bags. It hadn’t felt right making a specific journey to collect such things. But, as we were already out for a hospital appointment, popping in on the way back seemed justified.

I’d actually already visited the nursery/farm shop on the way back from the one meaningful development that did happen during the month of April 2020.

On 9th April 2020, I had an appointment in Bristol to, ‘learn to breathe on the SABR machine’. At the time, it felt like, “Finally, I’m making some progress.” And, indeed, I was…

I got some more tattoos, for a start!

Learning to breathe with the machine is actually an important part of the process. The position you have to lie in, is not that comfortable, and you have to stay there for quite a while. Additionally, you have to breathe through a snorkel contraption, that will actually cut off your ability to take another breath, for a set period of time.

The process works by taking a deep breath, and then exhaling 75% of it, at which point the snorkel locks up. You then need to hold your breath for a set period of time, until the snorkel opens up again. In my case, this breath hold was 25 seconds. And you need to be able to repeat the process a number of times. What that number might be, I’ll let you know at the end of May 2020. In fact, I’ll explain the whole process in more detail then, as well.

After I had gone through my trial run, I was given a CT scan, with contrast. This enabled the technicians to identify the best point of entry for the beams of radiation to be directed through my body. Three points were then marked with a tattoo. When I heard that I was going to be tattooed, I assumed that some sort of tattoo gun would be involved. In reality, it was just a needle with some ink. I mean, these tattoos are so small, I can barely see them. It’s almost disappointing, really.

That said, given that my SABR treatment has been delayed so they can change the approach, does that mean that more tattoos will be needed? And, if so, how will they distinguish between the first set and the new set?

Most importantly, will I get enough tattoos to form a ‘Join the Dots’ game?

Only time will tell.

So, there you have it, April 2020 turned out to be something of a damp squib, in terms of meaningful progress. It was, however, pretty full in terms of stress and anxiety, hence all the ranting…

Still, and assuming the SABR actually goes ahead, I should have some interesting things to report next month.