Hi Simon

Yes we've come a long way since this time last year.  Bring it on indeed! Irene x

Hi  Roz,

I lost about 60% of my tongue, but then my cancer was more advanced than yours.

They will presumably cut away the part underneath on the lefthand side where the growth

is and then some of the top and then just join the two parts. down the length of your tongue.

If your surgeon is as deft as mine it should be pain free. The stitches fall out after some days..

Whilst you are unlucky to have cancer at least you have had it diagnosed quickly.

I faffed around for six months plus whilst 3 specialists??? said 'looks OK to me'

I then saw a real specialist who put his finger on my tongue and said 'I think its cancer'

Good luck! I hope all goes well.

Colin

Hi Roz dog, I'm so pleased to hear that your cancer has not spread! Any idea when your surgery will be? I wish you all the best for a quick recovery.

Your surgery sounds different to mine, they originally told me they would do the same as you're having before I had my scans when they thought my tumour wasn't quite so big and they told me it would be a four day stay in hospital. Hopefully you'll be out in no time. Unfortunately my tumour was bigger than expected so I lost half of my original tongue which is why I needed reconstruction using muscle from my arm so it was a two week hospital stay. However, there was no pain and it was not so bad at all so I'm sure you will be fine too. As Colin said, the stitches fall out on their own and overall, my mouth healed within a few weeks after the surgery. It was just a shame it then got blasted with the radiotherapy just after!

Keep us updated, I'd like to know how you are getting on. Life is so unfair that these things happen, but sometimes being a younger patient can go in our favour with recovery. Stay brave, it'll all be worth it in the end.

Nicola

Hi Colin,

I seem to have been quite lucky in getting to see the right people, my GP was unsure but referred me, and the consultant I saw knew straight away I think.

I would of left it, but my mum kept bugging me to get it checked, thank god.

So far so good in regards to the NHS.

They seem confident it will be straight forward so I am not that worried about the actual surgery, more what the after effects will be like.

I will update when its been done.

thank-you

Hi everyone,

Not much to report except that I had a dental appointment yesterday at the Dental hospital and had two fillings!! I may also lose another tooth! Just to recap, before my radiotherapy started I had to have eight teeth removed so I have no back teeth on the top or bottom on my right side. So all chewing is done on the left side which means those teeth are being used much more. Along with the reduced saliva, decay has accelerated and a tooth that had root canal treatment three years ago is giving me a bit of trouble so looks like it will need to come out. I'm reluctant due to already having lost so many teeth, I have no idea how I will eat very well with another missing tooth which will be on the 'good side' I'm going to mention this to my surgeon at my next check up, just to get his advice.the dentist had to put three injections in to numb the area as my mouth just wasn't going numb! I think it's immune to everything now!

Simon, I'm struggling with weight gain too and I feel that I'm not going to put on anymore now. I'm still 6 stone 1 and I don't see how I will ever gain a stone to be back where I was. My diet has changed so much and along with the tooth issue, food and naughty treats just don't appeal as much anymore. I too have replaced all of my clothes for smaller sizes, I thought it would be a temporary measure but now I see its long term. I'm unable to taste ice cream either, very annoying! Puddings are difficult, not much agrees with my dry mouth. Glad to hear your saliva is improving, there's hope for me too! Are you using any mouth sprays? I started off on four hours a day at work once a week and I'm struggling! Fatigue has come back to haunt me as it was a few months ago but I'm going to struggle through it, it's all I can do. I was trying to explain to my boss today about how fatigue makes me feel, but I just can't describe it.

Irene, so sorry to hear about your friend. I remember you talking about her before. I often wonder about the other patients I met and how they are doing. I really wish we could have all stayed in touch. Christmas will most certainly be a better one this year, although I have many sad memories of last year so I'm anxious about that. I hope those memories won't get me down too much. I will think of you all when I eat my Christmas dinner (or what I can of it!) and sip my wine! Last year was an NHS milkshake down my tube and a rest on the sofa as I had only just finished radiotherapy a few days before. I had never felt so ill! I remember you had just started your treatment, it was hard to imagine back then where we would be now. I hope you can become friends with food again, and find some things that suit you and that you can enjoy.

Guzzle, I was sad to hear Access is unwell, are you still keeping in touch with him? I did wonder Why he hadn't posted on his thread in a while. Keep is updated if you hear of anything.

Vatch, I hope all is well with you a so know you were waiting for news. As for face pain, I don't recall any but I do have a weird pain/sensation in my neck, ear, jaw, chest since my neck dissection. The area is still numb but now and again I get a bit of pain. Have you asked your consultant what it could be? I was unable to watch the stand up to cancer programme, I knew it would be too upsetting. I get very emotional these days, god knows what that radiotherapy did to me but anything makes me cry now!

Hello to everyone else, and thanks for wishing me luck at work. All being well I will increase my hours very soon. Or work from home occasionally. As ever, it's lovely to have everyone's support on here.

Speak soon,

Nicola xx

Hi Nicola,

Thanks for your message.

The surgery should only take three hours providing the tumour is as they think it is. I don't think they are going to cut a whole part of my tongue off like I thought, rather dig the tumour out. So I will have a piece of tongue missing, but it will be underneath and a tiny piece off the front missing. I think this will feel weird for a few days. They said I will need some speech therapy but it should not take long for me to recover and I should only be in hospital for a few days.

I did read your early posts before I was diagnosed so it was a big help as I knew what could happen once I was told and what the steps were likely to be.

For the first few days I was on a bit of a downer but this seems to have passed now. Going around in circles asking why me, what have I done to deserve it, its not fare so young etc gets you nowhere.

I keep finding I forget about it all, and then it hits me. But I am very greatful that its early stage, and there are others going though far worse.

The operation should take place within the next three weeks. My neck is still painful every now and then and also sometimes when I swallow, but I am told this is due to the nurve the tumour is on.

Thanks for taking your time to reply and I will keep you updated.

Nicola

sounds like we all go through degrees of the same thing

- Whereas i loved my sweet pudding and cakes, I now have no desire for them

- I also loved to eat, now i just find it a chore

- although I am managing to slow my weight loss it still continues and I too have had to buy a few new clothes as i "echo" around in the clothes i used to have

Sorry to hear about all your teeth problems. I though i had got away with that, but it turns out that my own dentist might not have done a proper job ... we will see what happens there as i have my first dental appt at the hospital next week. Still i doubt it will be in no way as severe as yours

I understand what you say about work, i am now 10 weeks post treatment and back at work at about 85% i suppose. It takes me 1 hour to drive to work. i get in at 9 and leave at 4 and when i get home at 5 i go straight to bed and sleep deeply for a couple of hours....by the time Friday comes along i am shattered

I went to london for a few days with the family to do some sight seeing, but my enthusiasm was a lot bigger then my strength to do it and started to flag painfully by the end of each day, still it was nice to have had our first family sight seeing outing post cancer treatment.

I am told it gets better but i think its something we have to help along by doing some light exercises, but i cant be bothered with all that at the moment even though its for my own benefit

Any Nicola i hope you dental appt goes well and the getting back to work is not too tiring

Vatch

This new forum style is a bit weird to start with. :)​ 
 
Just to keep the thread updated. 
 
I feel a bit selfish keep talking about myself but I find it so hard to look at other posts and think of something to say.  
 
I am going to have my surgery on Monday afternoon, it should only take a few hours and I am going to loose nearly all of the front of my tongue from what I have worked out. About 4CM from the front is going. I might have a little bit left on the side. They want to take more healthy tissue away to make sure all the cancer is gone. They said they would not do this with an older person. But I should recover and adapt quickly. 
 
I am worried about what it will feel like after, having a gap where the front used to be, and I also worry about eating with food getting stuck and not being able to dig it out with my tongue, and talking, but I am confident after the shock of having the feeling of the tongue gone, I will begin to get used to it and start to make a recovery. My only other worry is my neck glands but its not likely its gone into them so I am pushing that to one side.
 
I just want to wake up and discover it all was a bad dream, but the hospital are very helpful with questions and support. And very quick with treatment. 

Everyone I have told has been supportive apart from a few people but some people just don't want to deal with anything like that, I was like that before, so I don't blame them.

Good luck to you all and I will post an update once everything has been done.

Have a good weekend!

Hi Rozdog

Just wanted to wish you all the best for tomorrow and wish you a speedy recovery.  Look forward to hearing from you soon.  Love Irene x