Mary, the girls here would be best advised to talk about issues with your tongue as they have had similare mine was just throat cancer

but i guess you are about to go through the same chemo and radiation process that both tongue and throat cancer sufferers go through.

Do you know if you have accesss to tomotherapy as opposed to normal radiation?

What you are about to go through is difficult, but hey, they people you are now talking to have all been through it and we are out the other side. I do not mean to scare the living daylights out of you hear but the treatment for head and neck cancer sometimes appears more brutal than the cancer itself ... of course it not as the treatment is trying to save you life.

As your treatment progresses there are many things and tips we have all leant to make thigs easier, but we all go through this differently.

I can ony talk about things from my side, but can tell you that people like Simon, Guzzle, Irene, Debs and Nicola were great people to talk to during my treatment.

If you want a bit more information on what it was like for my I blogged the whole of my process ... it helped me talking about it but i also hope it helps others understand what they are going through.

Once agin i hope i have not scared you, thats not my aim ... my blog page is gammaraygary.wordpress.com/about/

Shout if thereis anything you want to know

Have a good Easter

Regards

Gary

Hi Gary, Happy Easter!   Same for me, I no longer eat chocolate.  For me it's only the taste that puts me off plus it tends to linger in my throat.  I still can't believe I'm saying this as I was a bit of a chocaholic before! It normally doesn't bother me much, but I did feel a twinge of something - sadness? anger? resentment? not sure what - the other night watching the latest M&S TV ad for easter eggs!  Having said that, it's quite a while since I gave it a try (at Christmas time nothing had changed) so maybe I should keep having a wee taste every so often in case things have moved on a bit. You've just given me a notion for a hot cross bun!  I tend to steer clear of all bread, buns and biscuits but maybe I should be giving them a try occasionally too.  I do have a bit of cake now and again (usually sloshed with custard or even just milk and microwaved into mush). Suppose I could do the same with a hot cross bun and hopefully get the flavour?  Look forward to seeing you all on the 25th too.  Cheers, Irene.

HI Mary,

I think your doctor/surgeon should be able to give a prognosis as to the possibilty

of your being able to eat normal food eventually. Mine was able to tell me  that

it would not be possible because they had removed my soft palate and that together with your tongue

controls the opening and closing of your throat. I have an opening into my throat which

is about two inches square and not the normal small arch shaped opening .

It also controls your ability to form sounds. So if you can speak reasonably normally

I would guess you have little to fear, but that is just my opinion formed by personal

experience.

Good luck with your progress through RT.

Colin 

Hi Mary

I hate the new format of this site, it seems to keep losing things - or maybe it's just me!  I thought I had sent you a wee reply but there's no sign of it now!  So anyway.... glad your mask making went smoothly but too bad they had to spend a bit of time make adjustments.  It's crucial they zap the right spot, so time well spent!  I'm probably not best placed to advise re likelihood of you eating normally again, as my cancer was base of tongue/tonsil and I didn't need any surgery to my tongue.   I still tend to avoid some foods (bread - difficult to swallow) and chocolate (doesn't taste right) being two examples.  I also drink lots of milk to wash things down as it seems to lubricate better than water.   I see that Colin has already been in touch with you and there will be others on the thread who have also had tongue reconstruction who will share their experiences with you too, I'm sure.  Nicola, who began the thread, is doing really well now and has made great progress with her eating.  I'm looking forward to meeting her at the end of the month.  

Keep positive, keep smiling and keep in touch.  Love, Irene x

Hi Guys, 

sorry to dig up this thread. Hoep you are all doing well and having a good weekend.

I just watned to ask any one who has had a neck dissection, did you have any scar tissue problems?

I ask because I have had a small bump come up on my neck above the scar. The consultants say they think its just soft tissue but are sending me for an ultrasound to be sure.

I have gone into a worry a bit about it but they did not seemed concerned so hopefully its a thing they see often.

Many thanks.

Hi Space,

I have a lump above part of my scar tissue. The surgeon said it is liquid which can no longer

easily move down my neck because of the scar tissue. I suppose this is because the scar tissue

goes all the way through. Strangely it is on one side of my neck only, the up and down scar on the other side has no problem.I massage it each day when I shave and it has remained unchanged. Its almost 8 years now so I guess I'm stuck with it. A couple of years ago when I had my annual checkup I asked if they could remove it. Their attitude was 'why bother', so I didn't.

Colin

Hi Colin,

Thanks for your reply. Glad to hear you are almost 8 years post cancer.

I have had my ultrasound and they say its all fine, the bump is a remaining node which will have fluid every now and then and puff up a bit.

They did say there is a something (cant remember the name) in my thyroid, but it has not changed in six months since the last scan and its not related to cancer. Looked circular, but they say this is common in many people, anyone else had this?

I have also seen my consultants and they say everything looks fine, tongue is rocevered well and neck, they say they do not CT scan me anymore, I was qutie surrpised by this, but they say they only scan if there is reason to. I trust them.

Thanks again.

Hi all,

After 8 years a little more progress.  My wife often asks as she swigs her wine 'Would you like some?'.

I last tried about a year ago and it was painful, but I said 'OK'.  To my surprise I tried a small glass with

about 30% water and there was no problem. Living in France among the vinyards has been quite

frustrating but now a whole new world reopens. Yippee!.  I can only drink in very small sips but I'm not complaining.

Colin

Congratulations Colin!  We had our get-together in London yesterday and someone (Gary G I think) remarked on how we all practically cheered when Nicola enjoyed her first glass of rosé (albeit watered down with lemonade)!  It was just wonderful to meet the friends who helped so much to pull me through it.  We are planning to meet again (Liverpool and Edinburgh) so it would be great if you were able to join us - watch this space!  There was even talk of New York when we're all signed off at the 5 year mark!  Santé!