I was recently diagnosied with tongue cancer and have had operation to remove half of tongue and repalce with flap from arm and also have had glands in neck removed, operation was on 3/10/05 so still recovering and have compliacation with neck drain hole not healing up. Start radiotheropy at and of November. Just found this web site and perhaps it will give me some support to hear from people in simiar circumstances to myself. Although the operation was explained fully to me and all the doctors and nurses have been excellent i did find the operation very trumatic and the difficulties i now face in eating talking and generally recovering allot harder than i imaged. I still have along way to go but to hear from people going though or have been though the same as me would i am sure help.

Hi John, I'm sure you will find lots of support and info on this site. Most of us have either been there or are about to take the journey from diagnosis - treatment, back to some sort of health. I did not have surgery for my Cancer of the larynx (by choice), I had radio combined with chemo. Almost a year on I am fit and feel great. I can eat and speak, dance and shout - but not sing!But then I never could! I will not pretend that the road ahead is an easy one, but we do not have the luxury of choice!
I could not eat or speak for months so I can empathise with you. This site and communicating by e-mail have been a life saver. Friends and relatives mean well but they have no idea - unlike us on this site!
Feel free to ask, rant and rave!
Private messages are also useful. I've only just learnt them and
Keep strong - it gets better eventually!
Sue

Thanks for your message i hope the web site will give me a bit of extra support. It was nice to hear from you. Spent the day at hospital again today to try and find out why my neck has not healed up, liquid put in my hole in the neck to see where goes and luckly went nowhere so the men in white coats tell me all is OK and the hole will heal in time. Also had first visit to radiotheory to have mask made, that was a bit of a shock they never told me the would cover my eyes also so when they said shut eyes i thought they were just going to put arround eyes, i was mistaken. Anyway was quick so not too bad. Like you said it is a long road and i have only just started so i am sure plenty of surprises to come.

Hi John, I agree the making of the mask is horrid. When it is finished tho it will have a big hole cut for your nose and mouth, and also for your eyes. I was surprised how big the mouth/nose space is - plenty of room to breathe so don't worry.
The planning with the mask on takes time but once it's done the treatment itself is very quick. Take each step at a time, that way it's easier to cope.
As they say cross each bridge as you come to it.
On a lighter note, we have relatives in Abergele. Are you near there? My Geography is appalling!
Keep your chin up!
Take care
Sue

Hi John, did you see my last message? Need to click on left hand side - forum.

sorry I meant Topic

We live near to abergele in a palce called mold, the hospital i attend is quite near to abergele.

I go for my fitting of the plastic mask next week so will let you know how i get on. took another step today, i drove the car so have a bit more freedom now, i am very independant so when i was having to be driven everywhere by my wife and friends i felt a bit of a burdon.

Back to hospital tommorow to have the hole in my neck packed, they tell me this will help speed up the hole healing up, i am not sure as they have been packing now for 2 weeks and has not made much difference.

bye for now

John

My heart goes out to you. It brings back so many memories. I had about 2/3 of my tongue removed 2 years ago; like you I had a flap from my arm and had a total neck dissection. Thankfully I didn't have any problems with my neck wound - I truly hope they are getting that sorted out for you.

I fully empathise with the difficulties you are facing with eating and speaking and I well know how hard the recovery process is, but it really does get better. I've just posted an item in 'general chat' - hopefully it will go some way to reassuring you that things can - and do - get better. I won't repeat any of it here, but I hope you read it and get some comfort from it.

You can get through this. It feels sometimes like no-one knows what you're going through and no-one understands. Well, there are so many people in this forum who do know and I'm sure they, like me, send their thoughts and best wishes to you.

If I can give one piece of advice to you, it is to stick to your guns regarding treatment. I had to wait many months for speech therapy (I was told I was pushing myself too hard)and during the time I had to wait, excessive scarring took place and hindered my progress a little. I don't say insist on it straight away necessarily, but I would certainly ask for a referral to a speech therapist to see what s/he thinks.

Obviously every person is different but I have to say that, for me, speech therapy was the real turning point for me. I can now speak clearly enough to be understood almost all the time and I am now able to most things (I still struggle with bread and pastry - they stick to the roof of my mouth and the effort isn't worth the reward). To give you an idea of how well I'm eating, I've put on about 2.5 stones in the last year & I'm now trying desperately to lose some of it!

I'm now going out socialising again, which I wouldn't do for so long, and I actually sat down to a meal in front of strangers, at a friend's wedding a couple of weeks back. I never, ever thought I'd be able to do that again. It's hard going at times, and there may be times when you think you're not getting anywhere, but it's worth it when you come out the other side.

I sincerely hope that things turn out well for you and that you get the help and support you need. Remember, there is so much support for you here; let us know how you get on.



Janette x

This message has been edited. Last edited by: Dr Vinod K Joshi,

Thank you for you kind words of support, i know i will get though this and it is good to hear ffom others who can understand how i feel. I went back to hospitall agin on Friday and seen the doctors over my neck and now they have stopping packing and does seem to be healing up, lets hope so anyway. Also went for reflexology (I think that is how you spell it) it is offered by a cancer day centre near where i live so i thoiught would give it a go, must have been good as i am going back next week.

bye for now

john

I'm so glad things are finally going well for you . You must let us know if the reflexology really works - I'm fed up of trying different meds on the off-chance that one might work . I've had enough chemicals pumped into me, I don't want to take any more if I don't have to.

Good luck with everything and keep us up to date!



Jx

neck seems to be getting better (At last) if have no more leakage by end of week i think i am on the way. Went for second planning session had mask fitted, glad that is over, 40 minuets lying on a flat board with your head fixed to the board was quite difficult, i find it had to lie flat in ebd for 40 minutes !!! Nurses were very nice and helped me though it.

Bye for now

John

Good to hear your neck is healing. Mask fitting is awful, treatment is easy compared to that!
Good Luck
Sue

Oh, it brings back memories . I had to be held down to have my mask fitted. Never mind I was choking on my own saliva (better mine than someone else's, I suppose!); it was deeply unpleasant. But the radiotherapy itself really is a doddle. It only took a minute or two to get me settled and to deliver the radiation; I spent longer in the waiting room. I found skin care to be a bit of tricky, but new guidelines have been written since I had my treatment so I suspect things will have improved Besides. It's a small price to pay, I think.
Good luck; fight the fight and keep in touch,

Jx

Hi, my ENT surgeon told me don't expect anything great for 18 months to two years, and he was right, healing does take time, eating is very difficult and go for really bland stuff, as anything salty or sweet can be very painful, and drink loads of water.
The base of my tongue was removed on the right side, and was told I would not be able to speak properly, well I cracked that. Sorry about the pain you will experience, just keep us posted how you are coming along. BIG BEAR HEALING HUGS Garance