Hello, I’m a new member . Diagnosed in December.

Hi John. I’m just 3 weeks post treatment. My diagnosis was much the same as yours except mine was sitting on my tonsil, not base of tongue. I had the surgery, tonsillectomy and neck dissection, in early October followed by chemoradiotherapy - 30 fractions of radiotherapy and 5 sessions of chemo. (The chemo is to assist the radio in working more effectively.) Treatment ended in early January and I’ve learned an awful lot in the past 5 months or so! 
Do persist with neck and shoulder exercises. They’re important and, importantly, they do work! Swallowing too. 
Good luck with the next steps. Feel free to ask anything you like along the way. 

Linda

Thank you for your reply and great to hear that you got through it. 
I will keep in touch and ask questions as you say. 
John

Hi Mark, thanks for that. I have just read your story and that was very helpful. Having feeding tube fitted has been mentioned to me, was this an option for you ?

John

Mark

How remiss of me. I have just looked at your bio. Excellent. 

No John. A feeding tube was never mentioned, other than a nasal one after surgery. I think if the targeted site is fairly localised they don’t necessarily deem it necessary, but I’m happy to be corrected. I know a lot of people in here did have one and were very glad that they did. I managed to eat quite well during the chemoradiotherapy and afterwards, although admittedly it was mainly soft food towards the end. I am now even regaining some semblance of  taste which I’m delighted about!

I have got my video appointment with the oncologist on Wednesday so I will get more info on that hopefully . Glad you are getting taste back as well

john

Hi John, welcome to the forum -

It is totally normal to feel in shock at this stage, i was terrible when first diagnosed and leaned heavily on the people on here.

As you know this cancer is very curable, especially as it has been caused by HPV.

As for radio and chemo, well i can only speak of personal experiences. For me- chemo was no problems at all, i took my meds religiously (anti nausea) and had 1 day of mild nausea. I spent the chemo sessions either working on my laptop or listening to audio books- the staff really look after you in chemo.

Radio, got tough at the end of week four for me, and i certainly had maybe- 2 months from then on where things were a bit rough.

But you get through it and things do get better! Im 4 months post treatment now, i am regaining weight and enjoying my food again, and also am clear of cancer.

As for advice, the only things i can think of are - Don't be shy if you dont feel the pain relief is insufficient, and dont take it re-actively, once in the later weeks i found it much better to take pain relief in advance rather than wait for discomfort.

Also if you are on opoids, make sure you are taking laxido every day, whether you think you need it or not.

Finally get a moisturizer for your neck - i used nivea, huge tub and dirt cheap and it did the trick

Trev

Hi Trev, thanks for the good advice. Great to hear you are improving and clear . Tub of Nivea on the shop list now.

John

MarkEL said:

I think if the targeted site is fairly localised they don’t necessarily deem it necessary,

Spot on. 
I think that’s why so many people are offered reactive NG rather than proactive PEG.