Hi everyone

Just like to introduce myself to this site as I’m another new member. Basically, I was diagnosed with tongue cancer end of last year. I had a partial glossectomy, tongue reconstruction using flap from wrist, neck dissection, followed by six weeks of radiotherapy for good measure! Thank goodness for this website, I’ve found it very helpful.

All the best
Wendy

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

Hi Wendy

Welcome aboard!

I hope you're doing well. The worst thing I've noticed about my flap is that it's very dry when I wake up (sometimes it feels like it might stick to the roof of my mouth).

Are you having any difficulty eating? I lived on baby food and nutrition drinks for weeks before I was allowed to go back to "grown up" food. Crisps still seem dangerous, Danger is my middle name (along with Avoid and At-All-Cost).

Continued good luck!

Julia

welcome wendy, if welcome is the right word for those of us who need this site!!

hope your recovery is going well, you've been through so much - keep strong. you'll get loads of support here.

regards

gordon

Hi Wendy,

Glad you found the site.

How is your recovery from treatment going?

regards

Ken

Hi Julia, Gordon and Ken

Thanks for your ‘welcome’ messages. Well, I’ve made a good recovery and am continuing to get my life back to normal. It’s nice to be in touch with others who have also had to deal with the effects of this horrible thing.

Julia - I’m afraid that crisps are also off the menu for me too at the moment, but I shall continue to persevere! My ability to eat a more varied diet is slowly improving after the side effects of the radiotherapy, but I still rely on the milk shakes to give extra calories everyday.

It sounds like you’ve all been through a similar ordeal - I hope you are all continuing to do well too.

Best wishes
Wendy

Hi Wendy, welcome. I still struggle a bit with crisps which is hard, they are my favourite snack of all time.

Hi Wendy,

Welcome, I guess that is okay to say. Group that you don't want to belong to but now do. I too was diagnosed end of last year with Tongue cancer. Nov 14 2008. I had the partial hemiglossectomy and the neck dissection one postive lymphnode and 32 radiation treatments. I did not have to have the flap. As my ENT put it my tongue is actually too big for my mouth. Funny! Now it just fits better it is a little crooked but too look at it you could say the just carved an edge off! one way to put it I quess! It's nice to know you are not alone I found the message board just a few days after I was diagnosed while on GOOGLE.

Continued good luck and progress on more foods!

Pam C.

Hi Hagg and Pam

Thanks to you both for your messages. It is comforting in a strange kind of way to know that you’re not alone going through this and although the outcome isn’t always positive for everyone its nice to know that others are still surviving and still being able to have a good life - congratulations Hagg on your 12th anniversary by the way (if that’s appropriate!). I personally don’t know anyone else who’s had mouth cancer so being able to communicate through this website with others in the same situation is of great help.

It certainly sounds like we were both going through this ordeal at the same time Pam. I was diagnosed on 17th Nov 2008 and had the surgery on the 18th December but through sheer determination still made it back home on Christmas Eve. I also had one ‘unpredictable’ lymph node, so was sent for six weeks (thirty treatments) of radiotherapy as a 'belt and braces' measure. Has your speech been affected in any way now Pam? I’ve now got a bit of a lisp, but hey I’m still here and can live with that!

Hope you also continue to do well.

Wendy

Wendy,

I wouldn't say I have a lisp, a few letters don't sound right. I also work on the telephone all day. I have to drink water between every phone call or my mouth is so dry you can't understand me at all. Love radiation! Dry mouth is my main issue though. I had surgery on December 4th. I was home on the 6th. But i didn't have a flap though. So yes we are in the same boat. Glad to hear you are also doing well.

Thanks,

Pam C.

Hi Wendy,

I was diagnosed January 08 had the same op as you plus a dose (6 weeks) of RT.

As Pam, some of my letters/words don't sound right. I too work on the telephone and sometimes wonder how the person on the other end understands me.

My speech gets really bad when I am tired, stressed, trying to talk too fast or talking to a stranger face to face. I also suffer from dry mouth and a burning/raw tongue at times, but shouldn't complain, like you said we are still her, and you do get used to those annoying little after affects.

Regards

Sue

Thanks Pam. Yes, a dry mouth is still a bit of a problem for me too after the radiotherapy - mostly during the night. Providing I have a bottle of water and a packet of chewing gum handy, I can generally control it during the day. I also find the artificial saliva products on the market are quite good.

Likewise, my (teaching) job also involves lots of talking and I do sometimes have a slight problem with the pronunciation of some words. I now have to make more of an effort to talk a little slower and clearer, but I'm coping better with it than I thought I would six months ago!

Are you now getting over the other side effects of the radiotherapy regarding eating etc?

Best wishes
Wendy

Hi Sue

It's nice to hear from you. I had just posted a reply to Pam and your message just popped up! You've been through the mill too then.

I won't deny that it has been a rough old road but yes, these annoying little problems are really a small price to pay on the scheme of things. Also, I think that I'm probably more conscious of my annoying little speech defect than other people are really. Although, I don't get nearly so frustrated with it now!

Best wishes
Wendy

Hi miller, Glad you found us here .
I had mouth and neck cancer but part of my tongue removed from radiotheraphy.
I cannot chew at all and all my intake has to be soft food .
I keep hearing had a flap and tongue reconstruction but I was never offered this I wonder why?
Perhaps you or someone can shed some light on this.

Paual

Hi Paul

It’s good to hear from you. I believe the tongue reconstruction is done to give better tongue mobility – it improves the ability to talk, chew and swallow. In my case I had just over a third of my tongue removed and replaced with a flap of tissue from my wrist. Without it I don’t thing my tongue function would have been very good.

Not everyone seems to require one though, so it must also depend on the size of the natural tongue that is left after surgery perhaps???

Did you have much of your tongue removed?

Wendy