Hi everyone.
I was diagnosed with cancer of the tongue last week and yesterday was told treatment. I go in for surgery and reconstruction along with removal of lymph nodes on 4th April, probably in hospital for 2 weeks then recuperation. I can think of nothing else - how much pain will i be in, eating / talking difficulties afterwards etc etc. I am a primary school teacher so my job depends on me being able to talk for most of the day. Please help.....

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

Hi Nickyjay

Peace, greetings and welcome! I'm sorry that you need us, but I'm just as glad that you've found us.

It sounds like your surgery is very similar to what I had six years and some change ago. Like you, I was told to anticipate a hospital stay of 10 to 2 weeks; I went home a week post-op. I think the length of stay really depends on how well you're healing. I hadn't wanted to go home with my trach and ng tube, but you can't always get what you want.

It's completely understandable that this is foremost in your thoughts; it IS some wicked drastic surgery after all.

I had some pain post-op, about a 2 on a 10-point scale. Mostly it was from the sutures in my tongue scraping the roof of my mouth, and from the disrupted nerves in my right forearm. It wasn't terrible, but it's certainly not something I'd want to go through again.

I had an ng tube after surgery, so eating wasn't an issue for the first few weeks. After the ng tube was removed I was on progressively thicker liquids for a while. Once I was given the go-ahead for real food, I avoided stuff that was spicy, sharp or crunchy. Now? Unfortunately I have NO restrictions.

I didn't talk for a month--no one told me to do this, but with so many sutures in my mouth it didn't seem like a good idea. I was afraid that I'd break the sutures and bad things would happen to my flap. I sounded a bit odd at the very first, but that has more to do with the thickness of my flap at the time. You might want to ask a speech therapist for range of motion exercises for your tongue to help you with control and diction.

You're not alone in this.

Julia

Hello Nickyjay

I know exactly what you are going through as I had an identical operation just over two years ago – reconstruction using flap from arm, graft from stomach and removal of lymph nodes. I spent a total of six days in hospital after the surgery and two of those were spent in intensive care. I found the worst part of it all was the discomfort caused by the tracheotomy and once that and all the other tubes were removed after only five days, I felt that I had made real progress and was on the mend. I was then told to start getting my tongue moving as much as possible to improve its mobility. Otherwise, I didn’t experience that much pain, so don’t worry you will get through it.

Like you, I am also a teacher (I teach IT in further education) and was also worried that my speech wouldn’t be good enough to return to my job. However, I’m now back teaching full time, speech is not that noticeably different and I didn’t need any speech therapy.

I’m not denying that it was a walk in the park and did take me a while to get over it but there is light at the end of the tunnel. This website is great for getting help and advice – rest assured, you are not on your own.

Best wishes for your operation next month, please let us know how you are getting on.

Wendy

Thank you both for your comforting words. I am leaping between wanting it to be done and not wanting April to arrive at all. It is my 40th birthday 2 days before op and i'm starting new job at end of April - timing could have been a bit better!!
I am so looking forward to seeing that light at the end of the tunnel and getting my life back in my control.
Anyway, PET scan on mon, that should be fun x

Hi Nickyjay,
I just want to wish you all the best for your coming op. Stay positive and concentrate on getting through it all. Celebrate your 40th birthday in style - if it's any consolation, I spent my 50th birthday hooked up to a chemo machine, followed by radiotherapy. Oh Joy! Oh and my Christmas dinner that year consisted of milkshake and morphine!! I have to say though that I have more than made up for it since! Very best of luck and let us know how you are doing.
Dian xx

Thanks Dian
Although its not nice knowing that people have gone through similar things, it is very comforting to know that Im not alone. xx

Hi Nickyjay,

I hadn't been on the Mouth Cancer Fondation website for a while, but your story reminded me why I should! I was diagnosed with cancer of the tongue in October 2007 and had the same surgery that you are going to have on November 9th. I can honestly say that after the first few days I had hardly any pain. I was discharged home after 8 days. Eating was difficult to start with as my tongue was very swollen, however that gradually improved over the next few weeks. My speech was (I am told) remarkably good, I did have Speech therapy which I'm sure helped.

I also had a PET scan, which was fine, just had to keep very still for a very long time.


I'll be thinking of you on April 4th and look forward to hearing from you once your op is over.

Take care,

Ann

Hi Ann
Thanks for your reply - this site has been an absolute godsend for me.
I have switched now to not fearing post op stuff, its the thought of actually going down to theatre and dropping off to sleep knowing there is no going back....... just wish i could fast forward to say, a week post op?!
Now have chronic sinusitus as well - hope i get through PET tomorrow without coughing!
Nicky xx

Best of luck, Nickyjay. A big bunch of survivors will be thinking about you on the fourth.

Take care.

Mimi

Thanks Mimi.
PET scan went ok today - next biggie is Fri to get results and meet with everyone for pre op stuff.
Nicky xx

Hi Nickyjay. Good luck tomorrow, I hope the meeting goes ok. Hang in there. Hagg.

Thanks Hagg - and good to see you're still kicking it after 12 years! xx

I should update my profile now and again lol. Let us know how you go tomorrow Nickyjay.

Hi everyone!
Happy Birthday to me - what a way to celebrate my 40th!!!
Didn't get results from PET yesterday - nobody had looked at them yet - said they would look at them later!! Guess they aren't really that concerned, which I should take as a good sign.
Well, am on countdown now. Go in to hospital tomorrow to prepare for Mondays op - great way to spend Mothers day too!! I do know how to time things!
Hope everyone is ok - will be in touch soon,
Nicola x

Happy birthday, Nickyjay !
We´ll celebrate again after you get out of the clinic. All the best for the operation and the following days.
Shoshana