Head and neck cancer

Hi Backpacker. and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm sorry to read that your health has been up and down since you finished treatment after having your tonsils removed.

The online community is divided up into different support groups so can I recommend that you join the head and neck cancer group which is a great place to ask your question, share experiences and get support from others.

To join just click on the link I've created and then you can join and start a new post in the same way as you did here and also join in with exiting conversations by clicking on 'reply'.

It would be great if you could pop something about about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

If you have any difficulty navigating the community just drop me a reply and I'll be pleased to help

x

Hi Backpacker. Welcome to the head and neck community from me I am Hazel and I am almost 4 years pass radiotherapy and chemo for tonsil cancer
The most common side effect for me dry mouth now mostly at night very rarely in daytime. . I can’t do spicy food or alcohol I did get reoccurring ulcers and a tiny bit of fibrosis at back of neck. What are you thinking off in particular. It’s still early days for you I thought you may not think so  I also had radiation fatigue for almost 2 years which I managed by having 20 minute naps every day. 
hazel

I get pains around head, neck and shoulders, dry mouth is constant but manageable. I can eat spicy foods but no alcohol, nothing fizzy. The worst part is I was walking and cycling everyday after treatment, which I wasn't doing as much before. I also lost 5 stone in weight and now worry about eating healthy and watching my weight. Then all of a sudden my energy level just hit a wall and now I can't seem to get it back. Through the treatment and everything that was happening to me, I never really got to a stage where I worried about it, I just got on with it. I went to hospital everyday on my own either walking or public transport because I didn't want anybody else worrying about me.

Hi Backpacker

Do you think you're having enough protein/carbs etc? Just wondering as you've said your conscious of healthy eating.... Have you lost muscle mass?

I finished my chemo/radio in Oct 21 too. I'm not lacking in energy, am reasonably fit and active but I do have neck/shoulder pain all the time.  It wakes me up several times a night. In fact have just emailed my CNS to ask if its an after effect if treatment. I'll let you know what sh3 says.

My diet changed as well I was vegetarian before but then my taste buds went and I couldn't eat things I used to enjoy so now I'm  vegan. Recently started taking supplements to see if that helps but it's early days on that. 

Hi I lost just over a stone and that was mostly muscle

mass are you getting enough protein I found healthy eating in the first 15 months a no no it was all about calories and protein I was on 85 gram of protein a day and 2000-2500 calories I didn’t put weight on until

15 month I gradually   re introduced cycling and walking now 4 years in I can cycle 60 km plus if I want can do a decent hill walk. 
Can you contact your cancer nurse maybe arrange a dietician appointment? 

Hazel 

Yes, I have lost quite a bit of muscle mass 

I've lost 5 stone in total, because of taste buds I struggle with food. I don't enjoy eating as much as I used to.

Hi Backpacker and welcome from me too. You say you lost 5 stone. Was that during or after treatment? 
At nine months on you should be feeling much better. 
I lost around 5 lbs through treatment and maybe half a stone after. I managed to eat like a horse for a good 18 months before the weight  started going back on. 
Get your BP and thyroid levels checked at your GP. RT can cause damage to your thyroid and quite a few people need medication. 

The weight loss was during and after treatment