Radiotherapy after a neck dissection

It is often said that there is a very fine line between bravery and crass stupidity!

Nearly 5 years ago I had to make a similar decision - twice over the course of 15 months.  I have no regrets not taking RT at that time and had 4 great years.  Then, when I had a target last Novmber I had no quams about taking CRT and am doing great now.

It is always a very personal decision and is based on your risk appetite and understanding of the cancer and treatment.  Whatever route is taken everyone should respect you decisiona and support you; no matter how painful it is for them.

I quite agree, Peter.  But I think it is ok for me to make the comment about bravery and crass stupidity as I was talking about myself!

So glad things are going well for you.  You were a great support during my first neck dissection for which I am very greatful.

Kind regards

t was not a comment about you, but intended as a more general comment about respecting the decisions we must make about our treatment.  So many people say things which are really in their interests rather than in ours...  Well meaning, but not helpful.

It is always lovely to read your replies to posts Peter which have helped many people on this forum

                                                Chris

Hi, 

I had neck dissection in July 24, started radiotherapy in September 24 and it's been 5 weeks since my last RT session.

It's not a nice process, with the biggest problem being the throat. By the mid third week of treatment my eating had begun to slow down orally, and I was only drinking Forticip high calorie drinks from the GP.

First 2 weeks no issues, by the beginning of fourth week everything through the Stomach peg as the throat was to sore, very tiring but once you get into the routine its fine, taste buds went, water tasted foul, slimy.

Dry mouth, thick, I mean thick saliva issues, I kept reaching to be sick but not actually vomiting, this lasted for about 5 weeks, from week 4, to 3 weeks after RT finished. Nothing being taken orally from week 4 to 2 weeks after RT finished. Sleeping was a major issue, coughing sore throat and and a mouth full of thick saliva, I did find if i had a heavy dose of Morphine and anti sickness medicine at night and try and relax my breathing I did tend to sleep better, but the more Morphine the more constipation medicine required, It's just a knock on effect. 

Two weeks after RT finished I forced myself to drink water and Forticip medicated food orally and not use the PEG, even though it stung so much on the back of the throat, I persevered and have been drinking these for the last 3 weeks, not without pain I may add, but I tried different methods of pain relief and found this one to be the best.

Morphine didn't seem to help with the throat and roof of the mouth pain, so before eating I sprayed my throat with Xylocaine (the hospital will prescribe it), its a numbing spray, which brought tears to my eyes every time as your throat is red raw, then drink your Magical Forticip, straight after drink a glass of water to wash the food from your throat because it stings, and then a mouth rinse with Caphosol (again the hospital will prescribe this). This worked for me, it also enabled me to eat plain soup (no spices), 5 spoons and a mouthful of water worked a treat.

I can't see the light at the end of the tunnel, i know it's only time when I will be able to eat normally again, It'a a tough trip and sometimes I feel as though I am getting worse rather than better, but I know that's not true as I am feeling much stronger, less tired and no nausea.

I am only 5 weeks after RT, so long term problems, I can't help you there but, my taste buds have returned, saliva is getting more and I can open my mouth wider as days go on.

Hope this helps you Screech Owl

Thanks so much for your response, Roadrunner.  You certainly are going through a hard time. I sincerely hope you are not left with side effects which are troublesome to live with.  I decided against radiotherapy and at present am feeling well.  Who knows what is round the corner - not me for certain!

Hi Roadrunner

Your brave struggle with the side effects of radiotherapy will resonate with most who post on this forum, long hard road with seemingly no end in sight, but things do improve, I finished Chemoradio in June 2023...PEG came out in late September 2023, went to Tenerife in Oct 2023....playing a little golf, swimming, taste and appetite still improving.

GP put me on a couple of short courses of Zopiclone to help with sleep....good sleep is imperative to aid recovery

Take care

Peter

Roadrunner2024 said:

I can't see the light at the end of the tunnel, i know it's only time when I will be able to eat normally again, It'a a tough trip and sometimes I feel as though I am getting worse rather than better, but I know that's not true as I am feeling much stronger, less tired and no nausea.

It’s there though, even if you can’t see it. Six months will see you feeling pretty good and by a year it will all be a memory. It’s a slow slog to recovery but the prize is life. 
I am over five years clear, approaching six. I have a dry mouth. It’s a small price to pay.