Hi Everybody 

I went through the whole experience in January 2014 too. Unfortunately I didn’t find this site until 2015 so I really missed out on your wonderful support. I spent the whole of 2014  having operations, chemo and radiotherapy. I’ve just had my 5 year check with ct scan and I’m doing fine. Slight problem with my coroted artery this year which is something to do with the neck resection and treatment. But it’s fine really, I don’t let these things get me down, I just have to take some aspirin now to keep my blood thin. 

Would be nice to meet up if you ever get nearer to Kent anybody 

Best wishes

Carol

Oh dear I remember this happening to me regularly when I was a regular contributor to the site.  I typed up a lengthy reply and somehow managed to lose it before posting!  So here goes again:

Dear Carol

Delighted to hear you are at the same stage us 'our gang' and doing well.  We'd be delighted for you to join us when we next meet up, probably in Bristol.  I realise it's quite a trek from Kent, but closer than Liverpool or Edinburgh!  We'd welcome anyone else on this thread - Heddus? Joe? Clara? Pat? Sherry? anybody else I've missed?  

Between us (Nicola, Gary aka Guzzle, Gary aka Vatch and Simon S) I hope we can remember to post on this thread when we have a date for our next reunion.

For those playing that dreadful waiting game for test results, I'm sending positive vibes through the ether.  If you get bad news, get straight back on here for some great support.

Love Irene x

Hi Irene

That would be lovely to meet everybody.

We can take our caravan for a few days in the Bristol area and also meet our other friends that live near. I’ll keep an eye out for your meeting date.

keep well

Love Carol x

We’d love to welcome some new members to our gang! There are plenty of places nearby in Bristol for your caravan Carol, we’ve had a good laugh when we’ve all met up and it’s a special friendship to have, as we’ve all been through very similar treatments. It really helps me to speak with and share experiences with people who really understand. 

We will certainly let you know when it’s arranged.

Joe - any news yet? Please come back and let us know how you are. 

Soeak soon,

Nicola

Hi Nicola 

I think we were going through this crap about the same time. I was diagnosed in December 2013, so I spent all of 2014 getting through the ops and treatment.

I’d love to meet you all for a get together 

love 

Carol 

Hi all

I've got some questions regarding symptoms....I have a fingerprint sized patch on the front right side tip of my tongue, it fluctuates with ulcers and sores and tingles. I've had it for roughly 8 weeks, since I first noticed it. Last week I had some pin spot bleeding on the side and I've had some numbness/tingling intermittent on my lip and face. This area also has a rough feel like a cats tongue.

I've got a 2ww apt at maxillofacial on Thursday, obviously I'm worried. My husband is convinced it's geographical tongue, which I'm hoping for. 

Any shared advice guidance greatly received x

Hi Lenny

You have done the right thing in getting your symptoms checked by Maxol facial as they are far more qualified than a GP. There are many people who have been in your position on this forum but have been perfectly fine. There are many things that it could be besides cancer so please try not to worry until your appointment. 

I have been through this so the main thing is that you are being seen early which is never a bad thing. Good luck with your appointment and please get back to me when you have been.

my very best wishes Carol 

hello nicola, first of all the most important thing is staying positive,yes there are horror stories out there but the number of people ive meet over the past 6 years with the same condition have come through it to lead a near normal life ,obviously i understand your concerns especially as you have a young daughter ,which is why i suggest not to hide your symtoms,the more people that now will be able to help you when you need it, true its going to be a rough ride the next couple of years but you can pull through this, if theres any info on what the proceedure is for the op or the possible follow up treatments after please let me know , i was stage 4 tongue and lymph in neck ,im 6 years post op and although at times its been difficult im here and doing my upmost to lead a normal life again ,you can too,please let us all know how things go all the very best x

Dear All

Finding it hard to have to be posting here at all but my husband is waiting for treatment for tongue cancer, surgery at least (including some lymph node removal) and then maybe radiotherapy if he needs it. I'm focusing very much on practicalities at the moment... he's a teacher so speech is important to him, how long in your experience before he might be able to get back in the classroom? Should he be thinking after Christmas or longer (assuming things go well). What impact would radiotherapy have on his speech recovery?

Thanks :)