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.
Original Post
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
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
quote:
Originally posted by johnmac:
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.
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.

Lol

Janette x
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 Big Grin. 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 Banghead. 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!

Lol

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
Oh, it brings back memories Frowner. 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 Cool Besides. It's a small price to pay, I think.
Good luck; fight the fight and keep in touch,
Lol
Jx
SmilerHi, 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
thank you for all you kind words of support, it is a great help to me to hear that i am not alone in my experiances, have had a very good week overall feeling very positive and strong for the radiotheropy, went to the pub for a drink (well 1/2 pint and lasted me an hour), sleeping better at night, and called in to see peolpe i work with, went to cinema today, all small things but i just want to do normal things again.

Bye for now

John
Hi John, glad to hear you are keeping your spirits up. The road to recovery is not a short one but as we have no choice you have to find a little enjoyment along the way. Being with friends is good as this illness can make you feel very isolated at times. But you've always got all of us on the message to talk to!!
It's what kept me sane so anything I can do to help a fellow member of this exclusive club I'm up for!
Kind regards
Sue
SmilerHi Janmac, glad to hear you are making progress, I am now coming up to two years since ops, and even if I look back to this summer, on what I was doing, and how I felt; I think my surgeon was right he said don't expect miricales before two years and he was right,you may like to try a half of shandy as not so tough on the mouth, I still cannot manage a glass of wine. Big Bear Healing Hugs.
hi, i have had a faily good week, getting stronger all the time and eating a bit better, had a couple of rough days middle of the week, had the Flu jab i have had it in the past and was ok, but this time my arm was in so much pain and so tried and went off my food, only lasted a couple of days so not too bad. Had my last planning session for my mask, not so bad this time, also been out to a cafe twice and had soup and tea. Start my radiotheropy on Monday i am hoping i do not get too bad with it, i will have to wait and see.

Bye for now

John
Good Luck with radiotherapy, My husband finished his 6 week course at the end of June,He has been eating normally now since august and is getting fitter all the time, back to doing his fitness regime (he is addicted to exercise)!!!!also has a pint now and again.
We feel very lucky.He is attending for checks every 4 weeks,so far so good.
hi paul, not sure if your message was for me or not, but i have had 1/2 my tongue removed and replaced with a flap, i am fairly new to all this as operation was only on 3/10/05 and i am now undergoing radiotheropy so not sure how i will be when that is all over.

From my short experaince i have found it very frustrating tying to eat, i used to eat out allot and find i miss the whole expaeraince of eating, that said i do have some pleasures, i like soup (Which is just as well as i am living on it at the moment) also sweet things, i was eating meat and vegitatable mush for a while but just gone off it at the moment, the gravey made me feel sick. I dont expect there is any easy answer to the eating problem we have to all get to a level that we can acheive without the eating being a big strugle.

Hope all goes well for you

John
Just a quick note on how i have been doing with radiotheropy. The first week went O.K but it my second week the hospital thought i had a bad reaction as my neck started to swell up. By the middle of the second week my neck was so large they could not get the mask on and aslso i felt very unwell, was taken into hospital for a few days and found had an infection in my neck which had spread into my blood, had neck cut and put on IV for couple of days and infection cleared up. Now into my third week and feel very much better.

Bye for now

John
Hi John, you sound as though you've been having a tough time of it. How awful not to be able to get the mask on - bet it was awful when they tried!!
Glad you're over that little set back. Keep strong it will soon be over! Hope you are still eating, it's so important to keep your strength up and your weight. Eat sleep and mouthwash! What more can I say. Only that I'm an 8 stone weakling and I survived it!
Love
Sue
hi all,

It has been some time since i posted, i have been having radiotheropy and have found it a bit difficult, however finally got to the end and although feeling sore in mouth and throat i am not as bad as i could have been, finshed treatment 4 days ago so still got a couple of weeks before start to recover, just glad the daliy treatment is over. It has been so long since my operation on October 3rd i just now want to start to feel somewhere near normal again (whatever normal now is !!!!)

Christmas and new year was probally the most difficult time with everyone eating and drinking and enjoying themseleves, but i plan to have my christmas in a few months when i feel a bit better, the chritsmas tree is going back up and everything so i still have my christmas to look forward to.

Just going day to day at moment, yesterday felt quite bad but today feel a bit better so thought i would sit down and post a message.

Hope everyone is keeping well

Bye for now

John
Welcome back John! Great to hear that you have finished your radio and feeling well enough to post on here. You can only get slowly better and better and enjoy the little achievements that each day brings. Don't be too ambitious! Like you I quite like soup, which is just as well as I will be on it forever! It's amazing how many concoctions you can come up with, with a bit of imagination and experimenting! We are having another Christmas next weekend as my son and his wife get back from India after 6 weeks' honeymoon, so you are not the only crazy family on the block!!! Good luck John and continue going from strength to strength. Luv B x
Hi Johnmac.
Like the rest of us.....alcohol in spirit form and any kind of spicy food will set your tongue on fire as it is that much more sensitive after Radiotherapy and the effects seem to be for good, like the dry mouth thing. Three years on and although I did benefit from some improvement, i'm still catious and still restricted. Early on I bought one of those smoothie makers and used this for nutritious fruit drinks and soup. There is no end to what you can do. I made some great fruit drinks from bannanas, strawberries, kiwi etc...but mainly avoided the citrus fruits as they can be a bit sharp. All the experimenting encourages some fairly healthy eating, as fixing a quick sandwich is no longer an alternative. Porridge, or Ready Brek is a popular choice on here which you can top with Honey etc. I know the taste will seem bland, and eating a chore, but you need to build up again and your taste will get better in time. People here will give you loads of ideas and suggestions and I hope you will will enjoy your delayed Christmas when it comes to that time.

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