Hi - I'm three and a half weeks past my third tongue surgery for SCC. My first tongue surgeries in 2007 were relatively minor but this time round I had the full works - flap from wrist and neck dissection etc. I'm 63 and surprisingly fit but this is just one of a series of surgeries since 1995. I've had advanced ovarian cancer too from which I seem cured. Maybe that is why I just simply hated the surgery and seem to be allergic to so much - morphine, tape ... My body has been through so much and is rebelling.

I don't feel sorry for myself - I don't need radiation or chemo and I'm so very very glad to be at home. However, I am worried about the lack of flexibility in my new tongue, about my speech and difficulty in eating and in the garish appearance of my wrist wound, half of which looks good while the remainder looks like a volcanic landscape

Hi Alpaca and welcome to the best site you'd never want to be a part of! I too have had 'the full works' and yes, your wrist is going to look gruesome for a while. I took to wearing a knit cuff to avoid stares and comments from strangers, as well as my own discomfort. However, it will get better, I promise!

As far as your tongue, have you gotten any instruction on 'stretching' exercises, for both your jaw and tongue? If not, please ask for them and do them! They really help. A lot.

- Margaret

Alpaca

Margaret has it right. Your tongue motion, speech and eating will not get better on their own. A good speech therapist can give you home exercises that will significantly improve all three of your concerns. They are tedious and boring and do not produce immediate results, so patience is needed. You are not even a month out, so this is a great time to start on getting back your flexibility, speech and eating. Good luck.
It is now 10 months after my surgery and my wrist wound/flap is just beginning to fade and blend in so just give that some time - out of all my issues, the wrist flap is the only thing that resolved itself all on its own (although I did have to keep it slathered with lotion)
charm.

Thanks guys - very reassuring. I have my first follow up next week. I'm looking forward to seeing the speech therapist.

Alpaca, make sure they do a swallowing evaluation as well so you know what foods/consistencies you can tolerate. I can't say enough good things about the important role a speech therapist can make in the recovery process. It will take months but it will be worth it. good luck with healing and recovery,
Nancy

Hi and welcome Alpaca,
Three and a half weeks is not a long time since your major surgery. Patience is also something you need and which I had very little of initially. One frustration I had was the professional people not giving me any idea when things would start to improve. When I asked I got the �how long is a piece of string� answer.
With time the thigh healed well as did the wrist although I still have a large crater that looks like a shark bite. I sometimes still get a little embarrassed when I hold my left hand out for change at the shops an realise the checkout person has seen it. Sometimes I remember to hold out my right hand but more often than not I don�t care so much any more. Your tongue will also get better with time and the hospital should have arranged speech therapy for you. If not ask when you have your next visit. I made a bit of a game out of inventing recipes for food I could eat.
Also had a large ovarian cyst (and other bits) removed in June which luckily was not cancerous. I counted a heap of staples from belly button down and all that has healed well now even though it does not look too pretty.
As you can see by my signature I have had the same operation as you but it is now 3 years ago.
Please post if you have any questions at all and I will be only too happy to answer.

Gabriele

Thanks so much for your answer. How is your speech? Are you working? Is your speech back to normal? I know these are kind of naive questions but I don't know anyone who's had the procedure. At this point it's hard to imagine normality although I feel well in myself, I can eat bananas and strawberries and can talk for ages on the phone - albeit with that swollen tongue distortion

Alpaca

Your questions are not naive at all. As noted above, it's impossible to get straight answers on these important questions from the doctors. For what it's worth, after my tongue & jaw surgery plus flap, my speech is intelligible, although much slower than before. As your tongue recovers mobility, your speech will improve. I also had a palate prothesis made since I could not get my tongue all the way up to the back of the palate. I also strongly echo the importance of getting speech therapy as others have posted.
I took an early retirement to focus 100% on recovery.
Take a look at the main OCF page on treatment and surgery.
charm
There will be what we call a "new normal" after the surgery

Alpaca, it took my husband approximately 9 mos after he finished radiation before his speech was pretty much back to "normal"
He still has a little lisp and has some trouble with a few words but overall his speech is intelligible and most people don't realize he lost half his tongue. If he is tired his speech is affected. His speech does sound different to those who know him He started speech therapy 2 weeks after surgery and had tongue and speech exercises and had tapes that he had to practice new words every week. He stopped therapy when going through radiation and then it resumed 6 weeks? after treatment.
She also followed him for swallowing evaluations which he has some trouble with though it has lessened significantly.
The speech therapist helped us tremendously with what foods to eat, avoid, consistency etc. So you should get a referral
asap. it is early for you and you are still healing, but as time goes by you should begin to see a difference.
Good luck
nancy

Thanks, people. I have now had my check up in Auckland (I'm in NZ) and all went pretty well except that my flap is still too swollen for me to have any speech and swallowing therapy. It has pushed the native tongue to the side.

Now, I am brave enough to cope quite calmly with cancer (this is a recurrance of my second cancer) but I'm too much of a sook to actually look at my tongue. I was the same to some extent after my previous tongue surgery. So I didn't know how swollen it was. The surgeon insisted I look at it to avoid brushing it with my toothbrush - I have been told! When I looked, I found that the flap was much bigger than it feels.

I'm quite able to look at my wrist which still looks like raw meat but the tongue is such an intimate and personal part of the body. It's not clearly visible so it can sort of be ignored.

I have much to be thankful for in that I do not need RT and I just need to be patient about the swelling and get to know my new tongue by sight not just feel.

Best wishes