Epiblog #1 In An occasional Series Of Progress Reports

And James Models His Chief Dragon Slayer Uniform

Since the commander successfully consumed the holy ramekin of porridge, bringing this blog to it’s pre-assigned conclusion, several people have enquired about my progress, or worried about my silence. So here’s the first in an occasional series of epiblogs, which I’m very happy to write once or twice a month while there is still stuff to report and while at least some readers find me humorous at least some of the time. OK, calling them epiblog posts is nothing more than sophistry to circumvent my own blog termination policy, but hey, it’s only me and my immediate circle that’s affected by the policy not the entire nation, I’m not the health secretary, and I’m engaging in this flagrant breach with the full approval of my wife.

Because I’m posting these epiblogs as myself and not as Commander Badass, they will hopefully be less confusing for some, but perhaps less fun for others. Speaking of which, here’s a photo of James modelling the prize for his victory which we announced a couple of weeks ago in the last post.

Chief Dragon Slayer, James Owers, in full battle gear defending the Scottish coast

It feels to me and Shirl much more than 2 weeks since that epic slaying of Dougal McDangerous followed shortly by the Commander’s consumption recorded in that post of the paltry ramekin of chicken soup – foul diminutive fowl pun copyright Felix. Although progress has been mostly in the right direction it has felt like a real grind, so it’s quite uplifting to summarise here what’s actually happened, including several major milestones.

On June 15th, 12 weeks after my feeding tube was initially installed I had a replacement fitted. This was always the plan as they gradually deteriorate , but I’d been secretly hoping that after 12 weeks I’d be able to dispense with the bloody thing altogether. Sadly, apart from the small ramekin of chicken soup, I had consumed almost nothing orally, everything still tasted foul, my throat burned like a Californian wildfire and no amount of drugs to counteract the effect of the drugs that counteract the drugs brought any regularity to my bowels. Added to this, I was feeling increasingly queasy and forcing 6 food supplements a day down the feeding tube had become a daunting task.

So I was feeling a bit down on Friday 18th June (i.e. 4 days after the last blog post, when we attended the hospital for my 6 weeks’ post treatment review. Throat cancers are caught at many different stages, every patient’s journey is different, the treatment and the side effects are complex, and one person’s slight soreness is another person’s agonising pain. We knew all that, but we were still hoping that with all their experience the medics answer to at least one of our quantification questions might be more useful than ‘Throat cancers are caught at many different stages, every patient’s journey is different, the treatment and the side effects are complex, and one person’s slight soreness is another person’s agonising pain'. Sadly, considering we were there for an hour, we learned remarkably little, if anything, new. Do medics have a blanket policy of not giving anyone quantifiable expectations in case it could be misconstrued? The idea that a patient may actually understand stats, means, medians, standard deviations, long tail distributions and so on seems entirely unconscionable to most of them. Or, perhaps for throat cancers they simply don’t have the stats, which seems on reflection more likely as they certainly didn’t seem interested in documenting my own reported timeline.

In fact, their main focus seemed to be documenting a clean hand-off to my GP absolutely as soon as possible so they could get back to providing acute care to other patients. In many cases this is exactly the right thing to do, but I do wonder if that is appropriate when so many of the symptoms and problems I now have are entirely caused by their chosen treatment and not simply residual aspects of the underlying condition that led to the acute treatment in the first place. It would also feel slightly more satisfactory if the GPs had been showing any interest in picking up the baton. I could rant for many paragraphs about the cynically customer hostile system my GP practice employs to manage their over-burdened appointment calendar, but that will have to wait for another epiblog.

But anyway, the fortunate consequence of this depressingly unhelpful review was that I awoke the next day wearing my biggest Fuck Off badass hat. Things are definitely looking up now that I’ve taken charge. Specifically:

• I discovered by experimentation that squirting morphine directly on to the back of my throat, instead of taking it through the feeding tube, hugely helps me to swallow, and it doesn’t take much morphine or more than 10 seconds to kick in

• I am now eating a 500 calorie bowl of porridge every morning

• I have found one food supplement that I can occasionally tolerate orally so I never need to have food through the tube (I am still using the tube for some extra water and the less palatable drugs)

• Most days I don’t even need to take the oral supplement and my weight is staying stable on around 1200 calories a day (explains why I have found dieting so frigging difficult over the past few years!)

• I am walking 1-2 miles every day

• Strong black Nespresso coffee tastes like strong black Nespresso coffee, and while this is not going to cure anything, feed or hydrate me, it is a useful step towards social re-integration.

We have also employed a care nurse for a few hours each week. We should probably have done this several weeks ago, and although I don’t need much care any more, it does mean that Shirl can go out for a few hours without worrying that I am home alone.

The next big milestones will be the removal of my feeding tube in the next month or so, my next follow up with the ENT team in 5 weeks or so, and my PET/MRI scans in early September to establish if they have actually annihilated the little shit.

So, we are crawling back towards some semblance of normality at home, where yesterday Mrs Mairs and I both consumed identical dinners of cottage pie, mushroom, carrots and broccoli. But normality is a relative thing and I’d wager a few bob that none of you were greeted at the dinner table yesterday evening by the helpful advice from your partner that the morphine’s just next to the champagne bucket. If you look carefully you’ll see a small syringe in the image below. The amazing 4 bottle Joseph Perrier bucket was a consolatory gift from our local wine merchant when they stopped selling JP much to our chagrin. Over the past 3 months it has been pressed into service as a rather upmarket repository for paracetamol, co-codomol, fluconazole, dexamethasone, domperidone, ibuprofen, ondansetron, caphosol, difflam and doubtless many other drugs I’ve now forgotten.

The consolatory 4 bottle Joseph Perrier bucket complete with syringe.

Sadly I’m nowhere near ready for champagne yet, but I do keep checking, and I promise that a positive result will definitely trigger another epiblog.