16 months later...

[This turned out to be rather longer than I intended. I don't need help so please don't feel you have to read all (or any) of it.]

It’s easy to remember when my treatment finished – it was New Year’s Eve (double dose to get it over with) 2021. So 16 months now. I had 35 bouts of radiation, two of chemo (I couldn’t manage the planned third one) for throat (nasal pharynx) cancer. I got the all clear in April 2022 – so a year ago. Of course all that treatment comes with side effects of which there are quite a few. I thought I would list what I’m still experiencing. I’m 60 next month.

(This site is humbling – whenever I’m feeling particularly sorry for myself I can come here and see other having it much worse – but we still have to face our own problems.)

I’ve split this into three: physical (non-food related), food related and mental.

Physical (non-food)

I’ve had some odd ones – or at least they seem odd to me but maybe others share them. I feel the cold in a way I never did before. It has to be very warm before I take my jumper off and I always wear a vest. I sometimes wonder if this is a side effect of eating less (see below). I also seem to have stopped sweating. Not sure if these are related. I had an infra red sauna the other day – usually I would be dripping with sweat, this time not a single drop. None of this is serious.

I seem to smell different. Maybe that’s a diet thing too.

I can’t do physical work with my head down for long, for example: changing a tyre or edging the lawn. I find I get nauseous after about ten minutes. This may be related to the removal of my uvula before my treatment. This is boring but realistically I don’t do this sort of thing often.

I still get tired quite easily but this may be age! Or lack of fitness. I’ve really struggled to restart the little exercise I used to do.

I still can’t fully open my mouth. This is one of those things that you don’t notice until you try and put a big spoon in it. Or go to the dentist. I tried to eat a whole Lindt chocolate ball at Easter and nearly choked as I couldn’t get my mouth open wide enough to bite it. I also find my jaw gets stiff. I chew gum quite a bit which seems to help this.

My beard, which stopped growing altogether, now grows normally again.

I’m sure others must have experienced this – but several people tell me I look/sound much better. And I’ve seen them quite recently. I know I must have been grisly a year ago but people who I’ve seen six months ago say I look better – they didn’t tell me I looked ill six months ago!

Food

This is still a big problem for me. It has definitely improved but the changes are so slow as to be almost imperceptible and then you look back and think, yes maybe it has got a bit better. There are two issues: swallowing and taste. I have to take very small mouthfuls or I simply can’t swallow it unless it’s liquid (e.g. soup or custard). Dry (cooked!) pasta is much worse than fresh pasta; most meat is very difficult unless it’s either mince or sliced very thinly. Fish is not easy either – raw seems to be much easier than cooked. And things like croissant or cake sponge I find hard too as they form into a ball and I can’t get them down. I find therefore that I eat far more vegetables than I used too. I’ve also rediscovered a liking for salad with oily dressing.

I find bits of food hang around in my mouth in a way they never used to – don’t know what that’s about, not enough saliva maybe?

The taste is a bigger problem than the swallowing. Still, 16 months later, very little tastes right. Spices are too spicy, sugar is hard to discern (who knew that honey tastes of beeswax – obvious though it is but only really noticeable if you can’t taste the sweetness properly.) Wine tastes vinegary (and slightly “off” – oxidised/stale). I used to prefer dark chocolate now I eat milk. It’s a small thing but indicative of what’s changed. My smell functions completely normally which is both nice and frustrating – coffee in particular smells great and just tastes very bitter, and nothing else.

I think my taste buds have improved but the problem is that I have this constant sour taste in my mouth which pollutes everything. I wouldn’t describe it as metallic it’s more a sour mucus. So the first taste can be good but then the moment I start chewing it all goes off.

Food and cooking used to be one of my big passions – that has all gone and it largely remains a chore.  You also become very aware how most social occasions centre around food and drink. Not enjoying either now makes one so much more wary. Also because I need to eat small mouthfuls it takes me ages to eat anything.

I’m complaining but it is getting better just very very very slowly.

Mental

I think I was lucky. I was largely in denial about the whole thing and to some extent still am. It never occurred to me that this was serious. I never worried about the future. I was more irritated by the interruption to my life. As everyone on here knows, the treatment was much worse than the disease: I literally had a very minor sore throat, no more. So there was plenty of discomfort – the stomach tube, the catheter, the morphine cold turkey, the nausea and the worst sore throat you’ve ever had – but I literally never thought I might die. I had one silly incident a few months ago when I had a persistent ulcer on my tongue and talked myself into a panic (with a little help from Mr Google) which I bought myself out of with a private appointment (£400 for twenty minutes and an unnecessary tube up my nose and down my throat). But otherwise I’m expecting to live forever. As usual.

I was on anti-depressants for seven years (five years prior to all this) and was encouraged to go on them again at the beginning of the treatment. I had the prescription and even took one tablet but then decided I really didn’t need them. And I was right. The treatment part is easy anyway; the much harder part is the recovery, especially once you get the all clear. (Is that controversial? I doubt it, I’m sure fellow patients would readily understand.) But even with the strains – I’ll elucidate in a moment – I haven’t felt my depression returning. I’ve felt down and sad and frustrated and angry but it hasn’t been depression. So that’s a good thing. But everything else feels a bit grim.

I have a couple of personal problems. One, my business – I’m self-employed and have no critical injury insurance – collapsed when I couldn’t attend to it for nine months. I work in the financial sector and my area of the market is on its back so it has been almost impossible to get it up and running again. I have a few leads – good ones – but nobody wants to commit to spend money at the moment. I’ve even tried to get a job but it’s close to impossible aged 59 in my sector (and impossible in anything else I’m not qualified in). And two, my marriage is in trouble. You don’t need the details but it was rocky before this. During it my wife was sweet and insisted (even in the early days when it wasn’t necessary) on driving me to the radiation dates. But as I recovered so her friendliness retreated and now we’re near the end. So that is nothing to do with the cancer – just a concurrent event – but interesting that the rapprochement proved purely conditional.

Then to top it all my father died with Alzheimer’s on Boxing day. Bittersweet – I loved him dearly and miss him every day; but it was also a relief and you have time to reconcile yourself to him leaving as, frankly, he had all but gone before the end anyway.

So it’s all a bit grim. And it’s easier when all you have to do is worry about the cancer treatment. Once that is removed, you’re left back with your life and, in my case, it’s rather worse than it was before. And I’ve really struggled to get going again.

To be clear, I’m not asking for sympathy. I’m telling it simply to share my experience which I hope others might interesting or helpful.

(Well that was rather longer than I anticipated – classic problem of self-pity and too much time on my hands.)