Just come on to say Hi..( Diagnosed Tonsil cancer )

Hi 

I’m similar to you in that my lymph node lump was removed along with 41 others and I had surgery to the left tonsil twice. It was all removed with good margins. 
I finished my RT on feb 26th. 
I can share my experience of RT but not chemo. I only had 6 weeks of RT. 
I had read quite a few people saying it was brutal etc and it did frighten me I must say. However it certainly wasn’t that way for me. I seemed to sail through it. No fatigue etc. even now. Couple of issues with mucousitis but nothing much. Left with a little bit of lymphoedema which I have massages for. I’m back to eating kfc zingerburger meals. Have to have a drink with everything though due to dry mouth. I was lucky and never had any teeth out either prior to RT. 
We’re all different. Some suffer more than others. Pain thresholds differ too. 
one thing I will advise. Apply flamigel about 4 to 6 times daily. I never had any burns at all and I put it down to my constant use of flamigel. 
I used to count down my RT sessions one by one. It really helped. Also if you can get the taxi service provided by the hospital then do it. I met so many lovely characters and all with their own tale to tell. 
You can do this!! 

Hi Wodger 

You might find some help in this thread

Helpful Tips

Hi wogerv. Welcome to the club nine if us wanted to join neverless 7 years later here I am   Tonsil cancer 7  affected lymph nodes living a great life. We are all told the list of side effects rarely get all of them. My blog below might help. Top tip keep,off dr Google and if offered a feeding tube take it no,point in trying to eat as it’s hard to imagine but many of us wake one day and we’ve gone from being able to eat to nithung nit even water. I had ng feeding tube was my lifesaver and enabled me to make a good recovery. 
my trust don’t routinely fir peg feeding but I had to agree to a ng tube if needed and it was needed. 

Any questions just ask someone’s usually for the answer   Are yiu HPV positive that’s a question to ask consultant  

Hazel 

If you are offered a feeding tube take it, they can greatly aid recovery, if it is not offered ask oncology why.

Hi Wodger. Your story sounds very similar to mine, lymph node lump, tonsil was found as my primary site. Surgery for both the tonsil and the neck dissection followed by 30 RT. 

I, like Sooh4496, seemed to get through RT relatively unscathed. I was tired from the constant back and forth to the Beatson for 6 weeks and I had a bit of a redness to the right side of the neck where I got the RT. Other than that, I lost my taste but rammed food down to keep the the weight on. I was given flamigel and applied that 3 times a day.

That said, everyone is different and don’t be brave throughout it if you’re struggling. It’s a hell of a shock to the body and system. Speak to your CNS if you have issues and they’ll address it for you pretty quickly. Don’t let pride get in the way, ask for help. There are wonderful people in the NHS and indeed on here who will be all too happy to support you 

Hello Wodger

I had similar diagnosis but the primary was found in base of tongue, I'd had my tonsils out in childhood.  I didn't have to have surgery, I had 6 weeks of chemoradiotherapy which did get tough but I'm fine now. The doctors have to tell you all the possible side effects for informed consent, but most people don't get most of them or only temporarily. 

My advice for what it's worth: get through it one day at a time, take all the help and meds you need, drink lots of water - even when it gets difficult to swallow (fluids fluids fluids,  my oncologist said) - and do your throat and swallowing exercises.  Good luck!  We're here for you. 

Catriona