Hi All, weekly update for Tim(wanna play guitar)
Diagnosed Tonsillar cancer last year right side designated as: T2N1M0 HPV +16
Completed treatment 5/3/21
6 x Cisplatin plus 30 x rads.
So 9 weeks out today(Friday 7-05-2021)
Well after last weeks reversal and most of this week. Found out It was an infection on my chest. I was coughing up thick creamy mucous and had a rash all across the radiation area that resembled Hives or Measles, was told it should settle 7-10 days. No treatment offered, and It has! The rash is almost gone and the cough is tolerable.
So it seems I’m nearly 2 weeks delayed improvement which is annoying as all you want to do is get on and feel better.
Anyway, here’s a current resume of symptoms:
1. Xerostomia(dry mouth) I get it mostly at night and in the mornings.I need to sip water and apply Biotene Gel thro’ the night, this makes me tired the next day unfortunately.
2. Sore mouth. This goes with the territory and affects your overall state. It’s not bad enough for painkillers but I do use the Difflam to quell it. My mouth seems to change everyday.
3.Neuropathy: It’s no worse so maybe at a turning point. I get tingling now which proves there’s some feeling in the tips of my fingers. I’ve read this is a long term condition though.
4.Fatigue: still prominent at the moment, especially with interrupted sleep.
5.Taste: probably the worst side effect for me personally. Food is life! I can taste certain things for a short while then it dissipates and everything is cardboard. Some days I don’t taste anything, even coffee. I know it’s early days and it can take a year for any improvement, so gonna have to be patient.
6.Mind: things can get a little wrangled at times with the amount of unknowns and different scenarios that we all endure and create in our heads, but I’m bearing up and have to keep things in perspective!
So all in all, some positive and some unchanged. I really hope I see some improvement in the next week or two. Will certainly let everyone know if there is.
Well, I’ll sign off for now and wish everyone a peaceful and “tasty” weekend. Will post again next week.
As always, any replies, tips, stories etc. are most welcome
Best wishes Tim
Hi Tim
If you have any saliva then popping a Xylimelt onto your gum last thing might give you a little longer uninterrupted sleep. I still use them two years down the line. Always being a mouth breather I miraculously learned to tuck myself into the bedclothes and keep my mouth shut at night........the only time, my husband might say. This went a huge long way to avoiding the "tongue stuck to my palate in the morning" syndrome.
I found Gelclair very soothing for my sore mouth as the ulcers healed and kept my mouth scrupulously clean to keep it fresh and avoid thrush by frequent Bioxtra mouthwash and tooth cleaning with Oranurse toothpaste (still can't use Duraphat)
Fatigue is a killer not just because of poor sleep but because your body is still repairing itself from the onslaught of radiation. It can creep up on you months later and absolutely poleaxe you out of the blue. It's like wading through treacle. I was like that for a year.
I lost my taste for months and two years later it's still not in HD but I can assure you that improvements continue well into the third year and maybe even beyond. It took me a long time to enjoy my food and I strangely developed a real sweet tooth where there never was one previously: and yes this instant hit of a nice taste only for it to disappear after two mouthfuls is so disconcerting.....but again, that improves.
Once the medics have done with you, filled you with antineoplastic pharmaceuticals and bombarded you with X-rays your fate is out of your control so a positive attitude will give you a better time of it. Try not to dwell on what could have been and what might be. I have always been a glass half empty girl but I still got a remission and decided to just grab what was to come and see the sunshine. The black dog gets less black as time goes on, I promise. Just be mindful of anything new and don't be frightened of tackling your team. It's what they are there for and you'll never be a nuisance.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Ah, thank you Tim.
It really does get better
I need to update the blog. Thanks for the prod 
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
