Epiblog #2 Steps Backward

In the first of these occasional epiblogs {a couple of weeks ago I was ultimately very upbeat and looking forward to taking my RIG feeding tube out before the end of July}. In fact I foolishly listed that as the first of several upcoming milestones.

The more astute readers will already see where this second epiblog is sadly going, so I may as well cut to the chase. Fucking hell, life’s miserable right now. In fact Commander Badass would certainly say “Life? It may be life Jim, but not as we knew it”.  

Interesting fact – Spock never actually said anything close to the much re-purposed “It’s life Jim, but not as we know it” in the original series.

Despite my miserableness, Shirl is as ever being fantastically supportive but I know that right now life’s also very miserable and frustrating for her as well.

The basic problem is that for the past 12 days I’ve had a colony of open ulcers in my mouth so painful as to make it impossible to swallow food or even water. This pain is not responding well to many permutations of topical painkillers applied directly to the ulcers combined with increasingly powerful doses of paracetamol, diclofenac, oral morphine and trans-dermal fentanyl (trans dermal fentanyl is what I’ve referred to previously as a morphine patch).   

Fortunately we have not removed the RIG so I have reluctantly gone back to living on liquid food supplements with all the consequences for my digestive system which I sadly thought I’d already put behind me.

This mouth/throat problem has been compounded by another infection in my RIG, so I’ve also been on some fairly broad spectrum antibiotics adding to my general queasiness.

And finally, the physical debilitation has been exacerbated by the game of ‘pass the parcel’ between primary care and secondary care that I alluded to in Epiblog #1. I.e. the hospital would like my GP to take responsibility from here, but the GP doesn’t feel they have the specialist knowledge to cure something that is clearly a side effect of the radiation treatment. For most people damage to their mucosa (mouth and throat lining) has healed about 6 weeks after the treatment. In contrast I am now 10 weeks post treatment and this is by far the worst bout of ulcers I’ve had.

Despite ulcers in general being acknowledged as a very common and potentially very serious side effect of treatment, no-one has yet managed to develop a cure. Most people’s bodies cure these outbreaks in a couple of weeks although mine does not seem to be showing much sign yet.

The good news is that my endoscopy appointment, when they will put a camera down my nose, has been brought forward to next Thursday so we may at least then have a view of how bad things are in the throat which is not visible through my mouth.

Our frustration is well captured by the following exchange between Shirl and the pharmacist:

Shirl: I see the doctor has prescribed steroidal tablets but I was expecting a gel?

Pharmacist: Ah yes, they are very slow acting and you just place it on the ulcer 4 times a day

Shirl: What about if there’s more than one ulcer

Pharmacist: Well, the tablet only dissolves very slowly so I guess you could move it to the other ulcer after a few minutes

Shirl: what if there are too many ulcers to count

Pharmacist: Good luck!

When we started paying for an agency care nurse to visit twice a week that obviously triggered something in the NHS system which now means we are at least on the books of the district nurse team. The two district nurses we have seen recently have both been more engaged than the GPs (presumably they don’t have such an unmanageable appointment load and so they can actually spend time understanding the problem and even doing a bit of research). So their sympathy has been very welcome, even though they have not unfortunately been able to suggest any magic way forward.

Ask: If anyone knows a real expert in the treatment of radiation ulcers and more generally severe mucositis, then please do put me in touch. Any and all help very gratefully received.

In the meantime, let’s hope that the idiom “Time is a great healer” will prove to be true in the next week or two.