Hi Nicola,

How are you doing?
My mom starts her radiotherapy from tomorrow onwards, she took the expensive treatment which doctor told her that will have less side effect, I hope it does. She told me that her upper neck near her ear have a big swollen there, is that normal?
and can i know that is it completely recover after the radiotherapy? 

Hope you are fine there.

Take care!

Ping

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

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

Hi Nicola,

Sorry to read that you're having a few problems with your graft and ulcers. Any oral pain seems magnified doesn't it? Great that you're managing to eat fairly well though. Keep experimenting with the diet! It  was interesting to read about your Bailey's experience - I would have assumed it would have slipped down being cream based, but obviously the whisky element of it caused the burning sensation. Bless you! Good news about a few sips of wine though!

Work is going well. This is my first full time week and I do feel as if I've never been away. The majority of my role is office based and I have a certain amount of autonomy within the office ( in other words, I can do as much or as little as I like! Haha!) It's the class teaching that's most draining! 30 little darlings all wanting attention! Luckily, the staff have ensured I have little planning to do, just delivering and marking! I also have the advantage of knowing that my working schedule is punctuated with regular holidays!

You asked how I knew when I was ready to go back. I think I began to realise that my stamina was improving daily. I seemed to be planning and achieving more and falling asleep less frequently during the soaps!

If my surgery had gone ahead as anticipated, I wouldn't have gone back, but this temporary, medical limbo helped me make my decision (plus the salary is welcome!)

I would say, don't rush to go back! We all 'heal' at different paces. Take advice from your medical team and also be guided by your own feelings. You'll get there, but make sure you're physically and mentally ready.

I'm keeping everything crossed for you honey! The waiting makes this process much trickier for us all! (I'm counting the weekends until my scan so I know how you feel!)

Take care, hugs to you, Jo xx

Hi all hope things are going well and everything crossed for ultrasound Nicola. Thinking of you as I know waiting is horrid. My shoulder and neck feel great. Just a numb ear. Its hard to believe I had cancer as I feel so well. Radiotherapy up next. Tube or no tube. That is the question?

Going home tomorrow. Could have really gone today but two nights nor bad.

Speak soon. G.

Hi Guzzle,

Get the tube - better to have it and not need it than the other way round - and you probably will need it. I hated the tought of the PEG before I had it fitted but it really was a life-saver.

Good luck matey.

Simon

Hi Nicola,

I'm sorry to hear that you're waiting on a result again - isn't that always the way with these things? I agree with you in that I don't think the doctors, consultants and nurses appreciate the draining impact that all the worry and waiting has on us.

Shame about the Baileys. I'm able to drink non-chilled lager although my tongue does get sore after a couple. Scotch and 'flat' non-chilled coke slips down a treat though - give it a go if you like scotch - it makes the world seem a better place.....

I'm still having the awful night-sweats and I get the PET scan result next Wednesday. The extra tooth, as I call it, is still there and is now quite large. The oncologist says that he thinks it's bone. I'm still waiting for the hospital dentist referral to come through. The bone/tooth doesn't bother me as much as the night-sweats. I'm back at work on 4 or 5 hours a day - it's quite draining but it's getting easier. It was good to catch up with people at work and I found it strangely uplifting.

One piece of good news is that my ulcers seem to have cleared up. They did last much longer than normal ulcers which go after a week or two. Hopefully yours will go the same way.

Keep us posted on how things are going, Nicola.

Go on, have a scotch!

Simon XX

Hello everyone,

Good news - the lump in my neck is benign. Apparently it's common to have these nodes in your neck but mine is quite large. I think they are going to keep an eye on it. So I feel I can finally enjoy being in remission! Thanks for all of your supportive messages yet again, I honestly don't know what I would do without this forum sometimes. It's so comforting to discuss these things.

Guzzle, I agree with Simon, get the tube! I was told I wouldn't need one but I requested one anyway and I'm so glad I did. There is no way I could have managed without one. Now I've requested it be removed and they've said not yet! Silly to think they originally told me I wouldn't need one, now they say I must keep it a bit longer. Glad to hear you're feeling ok though. I remember feeling really well too so was strange to feel so well at the same time as knowing I had cancer.

Simon, I didn't used to like Scotch but now...who knows?! My tastes are completely different so maybe I'll give it a try. We're out for a Mother's Day lunch this weekend and I'm going to have a three course meal (well try, anyway) so that'll be interesting. It's also nice to feel I can do something so 'normal'.

I had a little chuckle about your tooth (only in a light hearted way of course) it's really odd to think that can happen when you've had a full set of teeth for years!

Jo, thanks for the advice on returning to work. I'm struggling with the fatigue at the moment which I'm told is normal after the radiotherapy however it doesn't seem to be improving. And of course when I go back to work it's not just a case of getting myself up and ready, it's a case of also getting a toddler up and ready too, then doing the nursery drop off and pick up etc. I think it will just come to a time where I will have to bite the bullet and go for it, then deal with the tiredness at the time. Well doe you for going back full time though, sounds as if you have supportive colleagues, as do I.

So off I go to finally enjoy being in remission and not have to worry about this or that for once!

Speak soon,

Nicola xx

Hello everyone,

Good news - the lump in my neck is benign. Apparently it's common to have these nodes in your neck but mine is quite large. I think they are going to keep an eye on it. So I feel I can finally enjoy being in remission! Thanks for all of your supportive messages yet again, I honestly don't know what I would do without this forum sometimes. It's so comforting to discuss these things.

Guzzle, I agree with Simon, get the tube! I was told I wouldn't need one but I requested one anyway and I'm so glad I did. There is no way I could have managed without one. Now I've requested it be removed and they've said not yet! Silly to think they originally told me I wouldn't need one, now they say I must keep it a bit longer. Glad to hear you're feeling ok though. I remember feeling really well too so was strange to feel so well at the same time as knowing I had cancer.

Simon, I didn't used to like Scotch but now...who knows?! My tastes are completely different so maybe I'll give it a try. We're out for a Mother's Day lunch this weekend and I'm going to have a three course meal (well try, anyway) so that'll be interesting. It's also nice to feel I can do something so 'normal'.

I had a little chuckle about your tooth (only in a light hearted way of course) it's really odd to think that can happen when you've had a full set of teeth for years!

Jo, thanks for the advice on returning to work. I'm struggling with the fatigue at the moment which I'm told is normal after the radiotherapy however it doesn't seem to be improving. And of course when I go back to work it's not just a case of getting myself up and ready, it's a case of also getting a toddler up and ready too, then doing the nursery drop off and pick up etc. I think it will just come to a time where I will have to bite the bullet and go for it, then deal with the tiredness at the time. Well doe you for going back full time though, sounds as if you have supportive colleagues, as do I.

So off I go to finally enjoy being in remission and not have to worry about this or that for once!

Speak soon,

Nicola xx

Hi Nicola,

Absolutely brilliant news about the lump. Hopefully you can now begin to relax and concentrate on your recovery.

Good luck with the Scotch - remember, flat non-chilled coke is the key.

Best wishes to your and your daughter.

Simon XX

Delighted for you both. Have a wonderful mothersday.Im at home and apart from a numb ear/neckfeel good with full shoulder function. So pleased about your lump for you and your daughter. Ill be really relying on all this expertise for RT. What do follow ups look like for you all? I.e. Intervals,scans etc?

thanks team!

Hi Guzzle,

Glad to hear you are at home and feeling ok.

You will have regular reviews throughout RT, mine were weekly. They checked my mouth/tongue, checked my weight, prescribed anti biotics or pain killers and creams to sooth the skin etc. and gave advice. I also saw a dietician each week to give advice on eating and tell me how many of the fortisip drinks I should be having. I also saw my specialist head and neck nurse and speech therapist each week who would just check up on me to see how I was doing and I met with my oncologist a few times during the six week treatment period. I also had to have weekly blood tests during the treatment as they need to check this before giving chemo.

Since treatment ended I was seeing my head and neck nurse, dietician and speech therapist weekly, then fortnightly, now it's every three weeks. I've seen my oncologist probably twice since RT ended and I won't see him again for another year now (all being well) and I have a check up at the ENT clinic once a month and I will continue to be seen by them for five years. My head and neck nurse is always at the end of the phone though. The support is amazing and I really believe that our NHS steps up when dealing with cancer patients.

I had my baseline MRI scan a month ago and I don't believe that I will have another scan now.

Let us know how you're doing and when you will be starting your treatment. All the best.

Nicola x

Fantastic news, Nicola! You are really having a bumpy old journey.

Debbie

Hi Everybody

Quite a lot of activity on here since I last checked in!

Nicola, I couldn't believe my eyes that you were having more bad luck and waiting for further scan results.  However delighted to read your latest post - phew! Have you had your 'back to work' counselling session yet?  Was it helpful?

Guzzle, welcome to the club doesn't quite right when it's the last club on earth you want to be joining.  However it sounds like you're already finding it helpful, as I certainly have.  I finished my six weeks of RT (with weekly chemo) on 31st January and am starting back to work next Monday - very gradually, 3 hours a day, 3 days from home and 2 in the office.  My treatment and support pretty much echoes what Nichola has decribed although there will be variations from hospital to hospital.  What I can't understand is that there would be any question of not having a PEG.  Much as I hated having it put in, I couldn't have done without it and mine was inserted as 'routine' i.e. they didn't ask they informed!  I had mistakenly thought I'd be eating properly with my PEG removed before I started back at work but it looks like that is some way off.  I had my two month checkup yesterday and while they are very pleased with my progress and happy with my graduated return to work, they did tell me I need to be trying harder with my eating.  I guess I knew that!  I am finding that I am struggling to eat almost any type of savoury food but managing sweet stuff OK - cereals, milk puddings, fruit (it used to nip my throat but is fine now) etc.  Having given myself a kick up the rear yesterday I tried to tackle a small plate of mince, potatoes and veg and managed about half of it before feeling a bit nauseous and didn't want to risk losing it altogether so gave up and followed with a yoghurt.  I have to keep trying though because I'm told if I persevere it will get easier.  I can't really describe what the problem is, not just the taste, the textures too.  I could quite easily have given myself the nickname Guzzle before all this happened to me and can't believe I now have no appetite or interest in food.  Hope that doesn't sound too negative.  As everyone will remind you, we are all different and have quite different experiences on the eating front.  Hopefully it won't be too much of a problem for you, but I would certainly agree with Simon and Nicola that if they are giving you a choice re the PEG, you should certainly accept it.  Best of luck with your treatment and keep using this channel to let off steam and share experiences.

Simon, best of luck with those PET scan results and hope the night sweats and extra tooth don't give you trouble for much longer.

Jo - delighted to hear your return to work is going well.  I will heed your advice not to overdo things!

Between paragraphs I've been tackling some chicken, pork and mushrooms in white sauce with rice.  As usual am struggling after a few bites.   They say my taste buds might also improve when I'm off all my meds which are gradually being reduced now.

Best wishes to you all and everyone I haven't mentioned!

Irene x

Irene this has been a lifeline. And whilst I have time on my hands I get to chat to nice people. Some having a much harder time than me. People like Nicola,you feb,access and many others put me to shame. Just want to get on with treatment now but it will be about 6 weeks until neck heals. Post op is great and been for gentle walk today. Weird place where my tonsil was but pain fine with paracetomol. I will ask about peg at MDT next week but intend to eat really well before RT! Good to hear you are recovering.

G.

Hi Guzzle

Good to hear you are recovering well from the tonsillectomy and yes you should certainly enjoy the excuse to eat well and pile on the pounds before your RT starts.  Compared to many others both on this site and friends I've made in hospital, I think I've got off reasonably lightly, i.e. not a full neck dissection, just removal of a lump, then like you a tonsil out.  I've met several others who have had to have their tongue reconstructed and am amazed at how well they have coped.

Keep up the good work mate.

Irene

Irene cheers. I had a partial dissection , lump out and one tonsil . I do wonder why he didn't take both and must ask next week! I will be keeping an eye on your food! Did you manage to take any gentle strolls etc during RT?

Hi Guzzle

I was the same as you, they only took the left tonsil out.  Mine started there/base of tongue and the lump on my neck (the first sign to me there was anything wrong) was a secondary tumour.  They took some biopsies from the other side of my tongue/throat while I was under, but didn't remove the right tonsil.

Yes I did manage to go out for gentle walks during RT.  I had quite a lot of naps, and tended to fall asleep at the drop of a hat in the middle of reading, watching TV etc but I did get out for a bit of exercise in between.  Are you having chemo as well or just RT?

Six weeks sounds like an eternity, but I'm sure you'll find it passes quickly.

Cheers

Irene (enjoying my Weetabix!)

Hi Irene got full meeting next wed but thus far only RT mentioned. I rediscovered joy of weetabix in hospital! Wish I could just start and get into it but should get a date next week. want a time scale to work to getting back to work and maybe taking a holiday but know its gonna be tough

enjoy wetabix. G.