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

Irene what a minority ee are trying to keep weight up! Halfway through bike ride this morning stopped and had massive piece of carrot cake! I have only lost about 5 pounds after tonsil op/neck dissection and will recover it before therapy!

Hi Nicola,

I have been in the States for three months and returned a week ago.   So pleased to see your progress, especially that it was a false

alarm with the benign lump. Can you feel the new part of your tongue like the rest of it?

I remember your trepidation at the thought of a PEG. I think everyone who has one becomes a believer.

Simon,

Seeing your bit about whisky I thought I would try it.  'OUCH' it was like liquid fire.  After 7 years I have progressed to light beer

and a small wine half and half with water.  About 2 weeks into my RT one session was different. Instead of 30 second bursts

there were about 3 or 4 second ones. I think they forgot to change from the last patient. There seemed no point in persuing it

after the event. Perhaps that is why I still suffer badly with mucus.

I hope you continue to progress well.

Regards

Colin

Hi all.

Just an update....I saw my speech therapist and dietician last week and I've lost 1lb :0( but as I'm now on one of the milkshakes per day instead of three my dietician wasn't worried and said this was to be expected and she is happy for my PEG to come out! I saw my consultant yesterday for my monthly oral check up and he is now going to do the referral, hallelujah! I'm still suffering a lot with fatigue and my speech therapist kindly sent me details of a fatigue combatting course for cancer patients which apparently is very good. So I will certainly look into that.

Guzzle, I hope the mask/mould went well today. It certainly gives you an insight as to what to expect during RT. glad to hear you're feeling so well, any news on the PEG?

Irene, really pleased that your return to work is going well. I'm eating pretty well now, it was cottage pie, broccoli and gravy for lunch today and beef stew for tea. Lasagne last night! I've also found that I can manage a Kit Kat without too much pain! I'm sure you will eventually enjoy some of these things too.

Colin, my new half of tongue is numb, I have a little bit of feeling along the edge of the graft, where the new part joins the old and it's painful. It's also quite tender and sometimes sore down in the corner of my mouth, especially after a check up with my consultant! He's quite aggressive when he prods around in there! I hope you've had a great time in the US, do you find it easy to get travel insurance following cancer? I'm hoping to go to the US or Australia next year and I'm expecting a hefty travel insurance quote!

I hope all is well with Simon, as he was waiting on more results.

Speak soon,

Nicola

Nicola. Glad things going well . Best insurance company I could find were insure with who are very helpful and seem more reasonable than others. Actually enjoyed mask fitting! Like a twisted beauty therapy. They even gave me moisturizer to go! Need a manbag to fully embrace metrosexual therapy! And maybe a wee blanket  for the chemo days so I can have a little nap. You sound like you are eating really well. I have maintained weight post op but have been eating like a horse! Therapy is going to be like man v. Food!

Hi Irene,

Glad your first week back to work has been good. I was lucky enough to have a phased return over 3 weeks (though I was back in the classroom from week 1!)

How has your phased return been planned for you. Hopefully your gradual build up of hours will allow your 'working' stamina to increase.

Take it steady though. By about week 4 I was 'running' when I should have been kinder to myself and paced myself more!!

Take care and relish those weekends!

Love Jo xx

Hi Nicola,

Great to read what you're able to eat these days! It doesn't seem many months ago that you were only managing small amounts of 'smooth' food!

Look at you now!

I hope the fatigue combatting course is successful for you. It sounds very interesting - when you find out more, do let us know any tips!

Guzzle, so glad your mask fitting went well. I loved your comparison of the procedure to that of a beauty therapy session!

By the way, can I recommend John Lewis for a man bag? Im sure they also do a nice line in little rugs!

Love and hugs to all on the thread, Jo xx

Hi Nicola,

Yes we had a good time in Florida, although the weather was cooler than usual. The States in general

suffered a heavy winter this year.

When I first had cancer I think my insurance was in the area of £250.  It is now £700 plus as I am

over 75.  Last year I developed pneumonia and was put off the plane home, so had to stay

3 days extra.  We made our first claim in 20 years. I guess that didn't help.

It may be that you will not be covered for an existing illness. IE. cancer.

Good luck

Colin

Hi Nicola,

Glad to hear that you're still making good progress. It sounds as if things are moving in the right direction for you. I've come to accept that the long road to recovery is full of ups and downs and that, in time, the former will outweigh the later.  I definitely feel better than I did a month ago but not always better than the day before (if you know what I mean). The PEG coming out was a big milestone for me and I bet it will be for you too - especially since yours gave you such hassle in the early days.

My latest visit to the haematology consultant was good news in that the PET scan didn't through up anything unpleasant and neither did the bone marrow test. The negative aspect from this is that I still don't know what's causing the night sweats. These do not seem to be quite as severe as they once were so maybe I just need to be patient - it could be a through-back to the chemotherapy. Time will tell. Next step is a visit to a hormone specialist (in case it's the male menopause!).

Colin. Good to hear from you, mate - I wondered where you'd gone. Sorry to hear that Scotch doesn't  work for you. I used to love red wine but I have't chanced that yet. My mouth is slowly becoming less sore so maybe one day.

Good luck to everyone here - it's quite a gang now.

Simon xx

Jo they have also given me moiturizer ! What next highlights. Me thinks NHS have taken on Gok Won as a consultant. A bit of grooming wont do me any harm.

Simon have you managed to run again yet? I will really miss it. After ct/rt I just want to be able to excercise and travel! I will also miss the odd scoth and reg wine. On the upside Access from Branchial thread reckons his taste for beer was undiminished.

regards. Gary

Hi Simon,

I would have thought wine was less harsh than scotch. I assume its the alcohol content that burns.

The good thing for me is that I can taste it quite well. A lot of quite nice red is grown locally.

Do you run just for fitness or more competitively? I did quite a bit when younger and I think being fairly fit

helped me through recovery.

Colin

Hi Simon,

I would have thought wine was less harsh than scotch. I assume its the alcohol content that burns.

The good thing for me is that I can taste it quite well. A lot of quite nice red is grown locally.

Do you run just for fitness or more competitively? I did quite a bit when younger and I think being fairly fit

helped me through recovery.

Colin

Hi Gary and Colin,

I used to run in the odd race a few years ago but my running was mainly to keep fit. Up until last June I was averaging 4 or 5 six-mile runs per week. I haven't been able to run since the treatment finsihed - my mouth and throat would dry instantly due to a lack of saliva. I now have a spinning cycle machine indoors which I use regularly - the trick for me is to do exercise that doesn't require me to open my mouth in order to breath. Like you, Colin, I think that my good level of fitness helped me cope with the RT/CT.

The real issue for me now is the ongoing night-sweats (which were back with a vengeance last night) - they are really beginning to get me down.

Good luck to you both.

Nicola - you're the leader of the gang!

Simon XX

Simon, I only run and cycle for fitness but done the ring of kerry on a bikevlast year and was training for Liverpool Rock n Roll marathon when diagnosed. Had lump, tonsil , partial neck dissection 2 and half weeks ago. Ran 5 miles today and cycled 20 earlier in week. Was walking two days post op. I don't think I will be doing this post radio/chemo but there are people out there who get back. It just appears to take time. Does running with a water bottle help? I may invest in a turbo trainer. I hope to take gentle excercise as long into therapy as I can even if its only a walk. I agree with Colin that fitness must help. But if you are active being laid up drives you mad ! I hope you get over night sweats mate. Is this common. Sounds a pain in the ***. And yes Nic is the leader. You are getting a little posse together. Post treatment Im hoping to get together with Access from Branchial cyst thread to buy him a beer. Will let you know where in case any of you fancy it.

Regards, Gary

Simon, I quite like the title of 'leader' !! I started this thread back in August when I was first diagnosed, never did I realise back then what a help this site would be. I've made many virtual friends and I found this site was a huge help to release and share thoughts and feelings and tips through the worst times.

It's lovely to hear that you will perhaps meet up with someone from the other thread Gary, I'm in Bristol. It's a shame that we're all probably so far apart as it would be good to have a support group going. I've often considered setting something up in Bristol for head and neck cancer patients as there appears to be nothing available at the moment.

I too believe that a good health and fitness to begin with aids recovery. I do not exercise as such but I used to and I'm a fairly active person being a single mum to a two year old. I firmly believe that my good health assisted my physical recovery from the surgery and also the chemo/RT. I had a mini celebration with friends last night to mark the end of a difficult time. I had a glass of champagne and a glass of wine, both tasted very sharp as everything does for me now, but I drank it anyway. I was determined! The tongue was fairly sore this morning though! Perhaps I'll try some red next time as Colin suggests. If anyone deserves to enjoy a drink it's us after all we have endured!

Nicola xx