Hi all,
I have been reading this forum for a while now and feel that it is now time to post our story. My partner was diagnosed with squamous cell carcinoma of the tonsil in August this year. Like everyone else, it came as a massive shock. First sign was the classic lymph node. RT has just started (one week down - 5 to go) and has had one lot of Cisplatin chemo. So far side effects not too bad - nausea, loss of appetite and loss of most sense of taste. I have researched endlessly online and feel pretty clued up now. I feel you have to be proactive, and keep asking questions. It is a full time job keeping up with all the appointments, encouraging him to eat, shopping for the high cal soft foods!, chasing up medics, researching everything, etc

I have already got loads of info from this forum, and hopefully will get more support, and in turn will be able to help others.

Kitty

Kitty, welcome to OCF! Its great that you are such an involved caregiver and you are being very proactive. I can tell you are on the ball as you already have a detailed signature and this is on your very first post. Great job with your signature!!!

You hit the nail on the head with nutrition being important. That along with hydration will be what helps get your partner thru the next few weeks.

We will be here to help you with any questions and offer support as well. As a caregiver dont lose sight of yourself and take a few minutes a day for just you. This gets to be very important as the weeks go by and things get progressively harder for you both. It can be difficult o have a smile on your face while watching the person you love suffer.

Best wishes with everything!

Hi Kitty. I hope the treatment continues to go as well as possible. It is good to have more 'Over the pond' folk here. There are a few of us and but not many. My impression is that the treatment we get here in the UK is pretty similar to everyone else on the forum. We don't have insurance cover to worry about but we also don't have such a wide choice of cancer centers to choose from. I was luck to live near mine in Edinburgh which seemed very good and meant I didn't have to travel far for treatments.

Keep posting. Best wishes, Sally

Hi again,
Gosh responses already - that is impressive! Christine - must admit a few tears in my eyes when I read your bit about giving time to myself. Most of the "me" time is on my computer - playing Scrabble etc - until I stray away and read yet more about this hellish disease.
Sally - good to find another contact from U.K> Yes - there has not been much choice - either of hospital or treatment.
Good luck both of you and look forward to chatting again soon.
Kitty

Kitty-
Welcome! You sound quite a bite like me....about four months ago. Yes, nutrition is critical; oral cancer hits two ways.....the lack of appetite due to radiation and chemo added to the difficulty in swallowing from the radiation. And on top of that, the increased calories burned by radiation and the increased calories needed to rebuild cells post radiation. Stay ahead of the meds.....don't wait for increased pain or nausea to increase medication, etc. We had a PEG tube inserted a week before radiation/chemo began. It was not used pften, but it was a huge help the last week of radiation and the first weeks afterward. And minimal weight loss. Keep that option in mind if eating becomes a chore.
My husband completed treatment 10 weeks ago today. I am happy to report that he is almost back to normal. Eating everyting, appetite at about 85%. Neck has totally cleared up, inside and out and no pain. His fatigue has improved greatly....rarely takes a nap. He is in the gym daily. His only issue now is some nerve damage in his trapesius from the neck dissection. He has been seen a PT and now a rehab doctor. We are hoping the damage can be reversed, but whatever happens with that, it is a small price to pay for what we hope is a healthy long life. Good luck...please feel free to contact me if you have any questions!

Hi - welcome!!! There are actually a fair number of uk residents here - and I'm Canadian our medical system is very similar to yours - and Australia. Hopefully your partner does okay through rads. It's not funny any means but doable. Expect and plan for the woes and hope for the best! Hugs!

Hi Goodhealthahead - similarites here also - partner had spinal accessory nerve removed during neck dissection (along with jugular vein and most of sterno-mastoid muscle) - they said nerve was through tumour. This meant a modified neck diss ended up a radical one. He is doing physio exercises daily (at present - probably not as treatment continues) and is in pain a lot especially walking. Have requested referral to PT after treatment - things take a while here in U.K. I have heard lots of positive things about exercises helping the trapezial muscle. The surgeon said he wouldn't be able to raise his arm above his head - don't you hate it when they give no hope. My partner was fit and healthy and active, non smoker ( blah blah - yep readers you have heard this all before - so many similar stories - esp with HPV+ DX)
Hi Cheryl - thanks for the hugs - I certainly need them. I might compare notes about medical system in future.
Kitty

Hello Kitty,
The key to getting back that mobility with the arm is starting PT asap! And as soon as he can handle it, massage the neck tissue to desensitize the nerves and soften the tissue. I have some weakness with my arm after all these years but it does go up! Other PT issues to think about is opening the mouth as wide as possible many times a day. I didn't know that one when I was in treatment. With dry mouth issues after treatment he will want to be able to open wide so the dentist can get back there and do his/her thing. And being able to eat a hamburger would be nice.
Best of luck to you!

Thanks for that advice Kris - not heard about the mouth opening before - although I did go to a support meeting and chatted to a speech therapist who recommended some swallowing exercises (I would never have thought such things existed before all this!)
All the best to you