Hello! - Tonsil Cancer - 3 weeks after end of radiotherapy

Hi Fab. You are not alone. 2/3 weeks after treatment end is when RT peaks so you are at the worst if side effects just now. A rule of thumb here is that folk feel a bit more on top of things at 6 weeks and have turned a corner at 12. It’s what happened to me after 6 weeks RT 

Keep hydrated. Keep the analgesia going and start trying soft foods. Ready Brek was my first go to with cream to up the calories. 

Hi Fab Welcome from me as well. Well,done on completing treatment this part  is par for the course what you’re feeling.  I’m 4 years post radiotherapy for tonsil cancer mine finished 31 August 2018 I did just about manage a small,plate of Christmas dinner , tip for for  Turkey  try thigh softer than the breast. Lots of gravy .But don’t be upset if you don’t manage it there’s always next year. We are all different in how  we recover, try to remember its a marathon not a sprint. You’ll get there , as Dani says  around 6 weeks 12 weeks then 6 months many of us get improvements.At the moment what your body is needing is nutrients which you’ve realised so keep trying little bits. My breakthrough was poached egg on well buttered toast around week 3 but was still getting most  if my calories from my n g tube. 
Hope this helps.

Hazel x

Hi. I had bilateral tonsillectomy followed by 6 weeks of chemoradiation. 30 x radio & 6 x chemo. I used my PEG from week 4 of treatment til about week 8 post treatment  I had it removed at week 11 post treatment  i constantly thought about all the foods I wanted to eat. It took weeks to eat more than a teaspoon of food at the beginning. I tried creme caramel, tops of mini trifles, soggy weetabix, & found the process very distressing. Once the PEG was removed I supplemented calories by having a Scandishake each day   I am now 7 months post treatment & life is good. I can eat a good range of foods & am back at work. Please feel free to ask me anything. 
There is light at the end of the tunnel. Keep going!

Good evening

Thank you so much for sharing your experience. Did you have mouth ulcers too? I find this the most painful and this is what is stopping me from trying food ( I tried a yogurt las week and I had to stop as it was burning my mouth and tongue ulcers. I am using aspirin for mouth wash and Dufflam but nothing seems to work. Are you back to work full time? Once more thank you so much for sharing. 

Thank you so much Hazel for sharing your experience and your advice. I hope you are feeling well.

Good evening, i hope you are well. Thank you so much for sharing your experience and your advice. As you know even whan you have support from your friends and family, having cancer can be a very lonely journey and i find it so uplifting to be able to be in contact who are or have gone through a similar experience. I tried to eat a yogurt last week but could not finish it as unfortunately my mouth and tongue ulcers are extremely painful. I am seeing my oncologist tomorrow and I will see what advice she will be able to give me (so far I have been using Difflam mouth wash as well as aspirin as mouth wash but not much of an impact). 

Have a lovely evening.

Hi Fab yes I am just iver 4 years post radiotherapy now, tip for yoghurt try Greek yoghurt instead if fruit yoghurts. The fermentation of Greek yoghurt I still find preferable to ordinary ones. It’s still early days for yiu it’s often 2 steps forward and ine step back.Most if us struggle to eat anything at yiur stage weekn6 can bring a change by week 12 many if us move forwards. But even now I can’t do spicy or citrus it’s trial and error. I kept a diary and if I couldn’t eat something I left ut alone and went back to it a week or so later. 
Hazel xx

Hello Fab. 
I was diagnosed with T4n1m0 of the tonsil at the beginning of the year, and had 7 weeks of radiotherapy and 5 out of 7 chemotherapy sessions.

So my treatment finished in April. As you say, mouth ulcers and mucositis made it difficult to eat, but it was also the idea that I couldn’t eat that took some getting used to. I started eating very smooth soft food about six weeks ago, so about five months after my treatment finished.

I still have my PEG which I just use for meds now. The length of time is different for everyone and I think my progress was always slow but steady like a tortoise.

Anyway, three weeks isn’t really all that long, once the ulcers have healed it’ll be so much easier for you. I used to use a mouthwash of salt and bicarbonate of soda in water, it just helps to keep the area clean and is easy to make up.

best,

Laura

Fab1 said:

I am seeing my oncologist tomorrow and I will see what advice she will be able to give me (so far I have been using Difflam mouth wash as well as aspirin as mouth wash but not much of an impact). 

Hi again. There is a medication called Antacid with Oxetecaine which is like gaviscon with a local anaesthetic. You swill it round your mouth and swallow. That can help you eat better. Try taking your morphine ten minutes or so before trying to eat. You can swish oramorph round your mouth before swallowing but it does sting a little initially as it has alcohol in it. 
Try custard and ice cream as well as Hazel’s tip of full fat creamy Greek yoghurt. 
You’ll get there. We all do. 

Hi. I didn’t have many ulcers but just found the pain in my throat overwhelming at times.I used Caphosol regularly each day, I was on codeine, paracetamol & morphine for a few weeks. I remember it was a struggle to eat, and I could not imagine it would get better. But it does get easier, you find foods that work for you & just avoid any that cause irritation or are hard to swallow. I ate a roast chicken dinner last night without any issues so felt very pleased with myself!
I’m working a couple of days a week teaching, which is enough. I’ve been back a few weeks & feel confident in the classroom again now. 
Yoghurts still make my mouth fizz so I don’t try them very often.