Hi Nicola,

I'm sorry to hear that your PEG is still causing you some issues. I didn't experience the bloating you mention but I did have some pain on a few occasions. I did have a lot of nausea but I didn't associate that with the PEG.

I hope that your ultrasound scan goes well - sounds like they're adopting a belt and braces approach, which is good.

I don't get the result of the PET scan until 2nd April (although the consultant did say that he would phone/write before then if there was a significant issue). I'm still having the night sweats and they are a real issue for me. I have to get up, shower and sometimes even change the bedclothes which is not ideal at 2am. I'm really hoping that these are just an after-effect of the treatment and they they fizzle out in time. If the PET scan reveals nothing then the consultant said that we may be looking at a hormone problem.

Good luck for today, Nicola.

Simon xx

Hi all. Ive just read everything from the start after reading the branchial cyst thread. I am in tomorrow morning to have my cyst removed. They will biopsy it and decide if it is benign or malignant with no primary yet found. As a former long term smoker of 47 odds not good. Will find out if i wake with no tonsils and neck dissection. This would be followed within a month by radiotherapy. To prepare me any advice on how long it takes to recover would be great. I have a family holiday in Malta booked mid August. If Radiation started May is this possible? Also how stiff and mobile is shoulder after neck dissection. How long after RT can you return to excercise? Sorry. To be a pain and thanks. You seem like a great bunch.

Hi Nicola,

How did your ultrasound scan go? I assume that there was no problem?

Ping - If the swelling you mention is a swollen lymph gland then you may well find that it reduces in size during the radiotherapy. I had an initial swelling that was a swollen lymph node - this was removed for biopsy. Then another one swelled up to the size of half an egg. It slowly disappeared when I was about half-way through the treatment.

Guzzle - Everyone recovers from radiotherapy at different rates. Personally I would not have been comfortable travelling just a few weeks after the treatment had finished but then everyone is different. I couldn't eat, drink or talk for a few weeks and my PEG tube wasn't removed for four months. You may well be fine. I know a lot of people who have sailed through the recovery. Radiation to the head and neck is a funny old business and can do strange things to eating and sleeping habits. As I said, I would not have gone abroad but you may well be okay. You will need to tell your travel insurance company about your situation though.

Simon xx

Simon thanks for prompt response mate. There is a small chance it wont come to this but I want to be prepared for when I wake up. My research suggests 80/20 against me. Everything crossed. Thanks for taking the time mate.

Hi Guzzle,

No problem. I forgot to mention, following my lymph node removal I had no stiffness or pain - just a small scar and a bit of redness. My career as a male model never really took off anyway!

Good luck.

Simon

nor has mine mate hence no photo. Think may be in for some form of neck dissecrtion if it gos wrong. No primary found yet. Apparently if node is positive for scc this is called occult! I can do surgery but RT sounds rough. You people whove been through it are heroes mate.

Thanks

Hi all,

I haven't posted on here since the ultrasound on my neck as I don't yet have any news from it yet but as you have asked, unfortunately a 3.5cm lump was found in my neck. I had a biopsy and I'm still waiting to hear the results. I wish the doctors etc would realise how agonising the wait is! I'm worried, as you would expect, but hoping it's not cancerous. I will of course update you all once I know anymore news, I'm hoping to hear from my head and neck nurse tomorrow. A few other things, the graft on my tongue is still as swollen as ever and I feel it's got bigger. It's quite painful at times too and I've had an ulcer on my tongue for three weeks now so again, I'm concerned. Of course it could be nothing, but after all I've been through its natural to worry. I will mention all of this at my next check up in two weeks time. I'm still taking the cocodamol but only at night. My tongue is still fairly painful first thing each morning though and my mouth is full of "gunk" that I need to spit out. I can barely speak until I do this but not much of a complaint to live with I suppose. After seeing the hygienist recently I left with a party bag full of tools to use on my teeth so my trip to the bathroom takes ages each day, several times a day!! I'm eating fairly well now though,I'm just trying most things although still steering clear of anything tomato based or spicy. I took a swig of Baileys thinking it would go down well as its like cream - I was wrong! It almost burnt my mouth off! A glass of wine is fairly enjoyable to begin with although does become painful. All in all, eating and drinking has become a lot better over the last couple of weeks.

Simon, How's the newly grown tooth?! Sorry to hear you're still having these night sweats, that's quite a side effect to be living with. Are you now back at work or still working from home? I hope that if its a hormone problem then it can be controlled somehow. I suppose you will know more next week when you have your PET scan results. Keep us posted on that.

Jo, I hope work is going well for you. It must be very tiring. I'm quite worried how I will cope with the tiredness when I go back to work. How did you know when you felt ready?

Ping, I hope your mom gets on ok with the treatment. I don't remember any swelling in my neck following my tongue surgery but everyone is different. I had swelling under my chin and this was apparently caused by the removal of my lymph nodes as the lymph nodes drain body fluid, but if removed, your body has to find another way to drain the fluid which can cause a temporary build up which also causes swelling. I would ask your mom to get her swelling looked at, but I'm sure it'll be nothing too serious. Recovery of radiotherapy is long, but most side effects are temporary, I'm sure your mom will make a good recovery, as the rest of us have.

Guzzle, you've probably had your op by now and I hope all went well. I hope they can give you the news you are hoping for but keep us posted. I would agree with Simon that I wouldn't fancy a holiday so soon after radiotherapy and chemotherapy. You may find you can't enjoy it as you will probably still be suffering with some side effects so you may feel comfortable postponing it until you can enjoy it fully. There is also the PEG feeding to consider (should you need one) I wasn't ready to eat and drink until about eight weeks after treatment ended and even then it was very limited as to what I could manage. However, everyone is different and you may well be fine. I'll keep my fingers crossed for you.

Best wishes to you Irene, I know you were planning on returning to work next week. We haven't heard from colon in a while, I hope all is ok with him too.

Speak soon everyone,

Nicola xx

Nicola thanks. In afraid I awoke minus one tonsil which had a tiny spot on it and a dissected neck! This group has helped me prepare though. On the upside the surgeon Mr.Lancaster is a wizard and I have full mobility in shoulder and neck. Could be out tomorrow. RT to look forward to. I will be keeping my fingers crossed for you.

Guzzle,

Sorry to hear this news BUT at least it's been found and you can now progress with any treatments you will need. I wish you a good and speedy recovery. I remember feeling quite uncomfortable after my neck dissection. It took a couple of days to kick in - stiff neck, swelling. Night times were the worst as I just couldn't lie down flat. Prop yourself up as much as possible with lots of pillows and try to sleep like that, I found that was the best way. The hospital beds are good as you can control their position!

I forgot to answer your question on mobility of shoulder - mine has been fine. I'm still fairly numb all around the shoulder up to my ear and down to my chest, I'm not sure that will ever change but it has got better over time. I've heard there is a chance that the shoulder nerve can be damaged but it depends on where that nerve actually sits as it can be in slightly different places for different people. Glad to hear you seem to be ok with that side of things.

You're probably finding it hard to relax now with knowing there could be more treatments to come, but please try not to panic. There are a few of us on this thread that have been through treatment for head and neck cancers and it is manageable. Please feel free to ask any questions & keep us updated.

Nicola