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 :)

Hi Joe, wow you’re doing so well for this stage, that’s given me lots of hope! Thanks for coming back to update us.

I’ve just finished week 3, so halfway through. The first 2 weeks were fine, no side effects at all and I gained 2kgs since the start of treatment. Then on day 10 the lining of my mouth started to break down and ulcers appeared. It’s got progressively worse over the course of this week. The worst one being an ulcer on the right side of my tongue that rubs my teeth. That’s the side of my mouth not being treated, so unfortunately means I’ve had to move on to mainly purreed food now. The pain has got worse too - I have a burning sensation most of the time. Swallowing is ok, I have some Mucositis right at the back of my mouth that hurts when I swallow as it makes contact with the base of my tongue, but my throat is so far unaffected. Taste is weaker but not gone fully at this point - I can taste on the right side of my tongue, right inner cheek, roof of mouth. 

I’m currently still on paracetamol, aspirin mouthwash and topical anaethestics, expect I’ll move on to stronger painkillers next week.

Keep us updated with your progress, it will give me something to aim for! 

Today I finished my final RT session 30/30, so I came to post an update.

I started taking morphine in week 4, and now at the end of week 6 I’m on 24 mg/hour via fentanyl patches and top up with 4-6 5ml Oramorph per day. I’m told this is a fairly low dose of morphine. In addition I take paracetamol and use an aspirin rinse multiple times per day.

I’m in a fair amount of pain. My pain is an intense burning / stinging feeling that is worse when eating and after eating. Until the last few days the ulceration was almost all on the left side of my mouth (side being treated), but completely covering that side, including inside of my cheek, lips, soft palate and back of my mouth. The last few days I also now have ulcers on the right side of my tongue. 

For the past 3 weeks my diet has consisted of Fortisip / Ensure, Scandishake, Calogen and chocolate mousse. They’re very pleased with me for managing the mousse, as apparently this counts as real food and will help to protect my swallowing function. I haven’t lost any weight since the start of RT. “Eating” burns like hell, but I rinse my mouth with aspirin beforehand and that enables me to get 2,500+ calories down me per day.

The outside if my face and under my chin is red, but not open. I have the feeling of mucus at the back of my throat but it’s not too bad. No mouth dryness so far, in fact I currently have excess drool! Except for nighttime when my mouth feels a bit dry. I’ve still got some taste remaining, in the part of my mouth that’s not ulcerated. 

Now I’m hoping I’ll be one of the lucky ones for whom things don’t get worse over the next two weeks! I’ll give another update on progress. 

Joe, how is your recovery going now? 

Hi, so I’m a little over a month past treatment my taste buds are back if not a little odd and confused about different flavours at the moment . But I’m feeling great in myself it didn’t take long once I started eating properly again.

i lost a total of 20kg which a lot was muscle mass as I used to be a big swimmer. I’ve just signed up to run an ultra marathon in June (100km in 20hrs) as a target to really focus on getting better

hows your treatment going? Must be nearly at the end now

Hi Joe, wow your recovery has been super fast! Do you have any pain remaining? Are you eating fairly normally? What was your surgery, did you have a reconstruction?

yes I’ve just finished, I posted my update a few posts above.

an ultra marathon, impressive! Which one are you doing?

Hi my name is Tracey I had surgeryv2 weeks ago today cancer of the tongue , I’ve had partial tongue removal and  left neck dissection but m my scary in neck is basically ear to ear now await g results tonsee uf soread to tisdues and nodes , mynpsun after 5 days was not to bad but but over the weekend I’m in agony spasms in face ear and neck , my tongue still feels thick so I’m only managing soft foods still , just need to know if all this is normal , my shoulder is giving me so much discomfort ,I’m strughking to lift and even get comfettabke , feel like I’ve gone backwards instead of forwards , on 10 mg of oxycodone quick release 4 times a day and they have started me on slow release every 12 hours 10 mg as a top up , can you give me any advice if this is all normal , im

trslky struggking today andcquite emotional x

H Tracey 

Welcome and so glad you have found this forum   as you will really find some wonderful support here. Your surgery sounds like you’ve had very similar to mine (5 years ago). I would say that at the moment everything that your feeling sounds pretty normal. I don’t know if your going to have radiotherapy/ chemo after your neck op?  Hopefully not, but don’t be too alarmed if you do as many of us have. It normally depends on your lab results on your lymph nodes. I had cells in some of mine but they were well contained so my treatment was labelled as a belt and braces job in case there were any undetected.

Your tongue will be sore for a while yet but it will recover fairly quickly, like you at the stage you are now ,I just had to eat soft food and took plenty of painkillers and mouth wash. Eating will be more of a problem if you have to have treatment?? 

Your shoulder problem is normal and will be painful and stiff so you do need to do your exercises.  Stand facing a wall and walk your left hand up the wall as far as possible to strengthen the shoulder muscles on that side otherwise it will be very stiff  and difficult to raise your arm long term. I did it every day and now my arm raise is only slightly less than the other. 

The surgery is all over now so keep looking forward and think of that Christmas dinner! 

Well done brave lady, always here with any questions 

kindest regards

Carol

Hi Tracey. I had same op on right side. Its not that long since your op so you will be pretty tender.

I was told to expect nerve pain as they cut through them getting to nodes,and yes you get quite a belter of pain at times. It takes time but it does improve.I am numb on right side of face and neck I think it is now going to be more or less permanent. Having the area touched at checkups was and is torture.

I began stretches and facial excercises as soon as I could,they do help.Also when the scar was well healed I massage with bio oil gel that has helped alot too. My shoulder gives me trouble too again I do shoulder lifts and it does help. Theres some physio videos online that are really good too.

Hang in there it does get better.xx

PS> my facial pain was trigeminal nerve pain,no painkillers touch it.

Thankyou so much , your  advice is very welcomed , im

awating results from my lumps and tissues , what does belts and braces mean please , I just wish I  had asked earlier about recovery , I honestly thought I’d be well after a few weeks , they make it sound so simple ,  I also have a numb ear  , and feel like my nerves are all  out as even my clothing hurts my skin at min ,then you come back from theatre and you seem to have lost part of what ever they say to you , im struggling a bit today my emotions getting the better of me , but if I cN be as strong as you and everyone take on here then I will be good , I can’t wait for Christmas , how many weeks months or years are you now from surgery please , I m greatful for you’re reply xxx

Thankyou so much , your  advice is very welcomed , im

awating results from my lumps and tissues , what does belts and braces mean please , I just wish I  had asked earlier about recovery , I honestly thought I’d be well after a few weeks , they make it sound so simple ,  I also have a numb ear  , and feel like my nerves are all  out as even my clothing hurts my skin at min ,then you come back from theatre and you seem to have lost part of what ever they say to you , im struggling a bit today my emotions getting the better of me , but if I cN be as strong as you and everyone take on here then I will be good , I can’t wait for Christmas , how many weeks months or years are you now from surgery please , I m greatful for you’re reply xxx

Belt and braces just means they gave me radiotherapy and chemo to make sure i had the best outcome incase there were cells in the nodes they had left behind. My tongue cancer was just over 5 years now.  My face is still numb and my neck has all the nerve endings feeling your describing but it does get much easier as time goes on and you get used to a different way of life. I believe in being positive and like you I have grandchildren to keep me going! Keep in touch with your progress as it’s so good to talk when you have so many questions going on in your head.