TIM(Wanna play guitar) update 14/05/21

Hi All weekly update for Tim(wanna play guitar)

Diagnosed Tonsillar cancer last year T2N1M0 HPV +16 . Treatment, Chemoradiation. 6 x Cisplatin plus 30 x rads delivered concurrently.

Well, am week 10 today(Friday 14-05-21)

The chesty cough I had(have) hasn’t gone completely so to be sure I phone the assessment unit who recommended I speak to my GP who said as I’d been coughing for some weeks I’ll need a chest X-ray. (Alarm bells straightaway). I was given some antibiotics(Amoxicillin) in case it was a bacterial infection which I’m taking as we speak. But I remembered that on one of my numerous visits to the EAU for constipation they’d given me a diaphragm and lung X-ray which were both clear. I mentioned this to the clinician and she said an X-ray wouldn’t now be necessary as it was clear only 8 weeks ago. Not too sure on that but I’m going to ENT on Wednesday so will get the Consultant to look at it then.

Anyway, this weeks resume of side effects.

1.Neuropathy. Small improvement here! About 10%  so am back playing guitar (badly)

2.Fatigue. Comes and goes as it pleases. Sometimes,I can just about get up in the morning and sometimes doesn’t effect me all day. I’m wising up tho to spread the available energy I have to the important daily tasks. 

3.Mind. This is a strange one as we all get affected. It’s very easy to become depressed about the whole thing but I’ve found if your mind is distracted-even by mundane domestic jobs-it’s easier to cope. Your mind can really play tricks with your day. I find I judge my instantaneous feelings as though my life will always be this way. It’s not until you get a sober look at the overall picture of what your body has taken on to realise that it’s a long overhaul to get back to full health!

4.Taste. The biggie for me at the moment. I now have some taste returning this week( a milestone). Everything is salty! I know it’s not what I want but at least it’s a change from the zero taste I had last week. Hopefully, it’ll improve. ( Although this morning- absolutely nil taste: very disappointing)

5.Xerostomia(dry mouth). This has stayed the same really. It’s something that I do really hope will improve. It affects quality sleep which I believe is fundamental to healing. Being woken in the night to water your mouth is very disruptive and emerges as fatigue the following day. This vicious circle has to be broken somehow to help healing.

6.Mouth. My mouth has largely cleared the mucositis but still feels like a disaster area at the moment, especially my tongue. First thing in the morning it’s all tight, and soz, but I need a large, strong, sweet Americano grande to loosen everything up! (I can’t always taste it tho’). The blisters and sores seem to be gone! Does anyone think I could stop the Caphosol gargle?

That’s about it this week. If you can relate to any of this don’t hesitate to say hi, comment or chastise All comments are very welcome.

Will report back next Friday and pass on the Consultant’s findings. He’s a Surgeon so he’ll only look at my throat with an Endoscope. Ps I don’t get an MRI until June 3rd and don’t see my Oncologist until June 18th. That’s 15 weeks post end of treatment.

Best wishes to all have a peaceful and healthy week Tim