Hi everyone
I had chemo and radiotherapy Aug- Oct 2021 for left tonsilar cancer (HPV) plus one lymph node. I had 2 x chemo and 35 radios. I spent 2 weeks in hospital due to dehydration . I've had, like others, multiple ulcers in my mouth and one particularly persistent little b******d on my epiglottis. I lost 2 stones in weight and had 5 teeth removed pre treatment.
I am now 9 and a half months post treatment and I have been to some very dark places in that time. For many months I truly believed that I would never eat again or feel normal. I fully used a PEG from week 2 of treatment and until 4 weeks ago. I couldn't swallow anything but sips of water for 5 months so lost considerable swallowing ability. I found the lack of eating terribly difficult and isolating.
In the past 4 months I have worked on my throat muscles and slowly, slowly started to eat again. I'm nowhere near to eating 'normally'. I don't enjoy eating yet (was previously a confirmed foodie) and find it very tiring. I have what I consider a mostly soft diet because anything more sticks in my throat and my throat makes a very loud squelching noise. It's pretty antisocial lol. However, just this week my mouth is slightly less dry (hurrah!!!) and I have, very slowly managed to eat new potatoes and a small amount of tuna and broccoli (previously impossible). I returned to work 6 weeks ago. I can now go for walks which I have always loved (with plenty of water!). I have left the awful fatigue behind.
I do believe that things will continue to improve and so I just wanted to hopefully give anyone else in my position some hope too.
Ouch to pizza tomatoes can be very acidic ! Had to laugh at the Lick and suck ( think Dani will get where I’m coming from )
Hxx
Lucky it wasn’t a sausage
it’s likely what got us all here in the first place !
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
How old are you Aly?
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
Hi Aly
This posted earlier for someone I know it may give you some more ideas.Hope you tried the toast.
Hazel x
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 5 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
Hi Hazel thank you I will have a read later , I haven’t had toast yet but I did have a little bit of moose with extra cream & a lick of a crisp xx
Hi Merryground…good progress and very encouraging….I am a foodie too and loved eating out and I am getting back out there 4 months post treatment….just soft things but it is great to feel a bit more normal. the thing I find frustrating is the time it takes to chew and chew…and by then the food is cold which I hate….I was silly and tried a bit of an Indian this week…ouch still can’t do the spices. Well done on the progress and keep going xx
Thanks Anghog. We'll done to you too! I haven't been brave enough to eat out yet. Plus nowhere really seems to cater for a softish diet. Yes, food goes cold because chewing taking forever. I hate that too
Good for you for trying an Indian! After effects not so good but we have to keep experimenting.
Take care
The first time I ate out I had pasta which went down ok without much chewing. Chased it down with a pint of ale
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
You’ll get there all of a sudden you’ll be eating more orally than by peg. Just be aware of irritation s caused by some foods.we tend to forget how brutal the radiotherapy is.
I missed crisps more than anything else. Try quavers or skips they melt just gave a drink to help it on it’s way.
Hazel x
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 5 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
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