Please keep us posted - wish you all the luck in the world!

I will also keep you posted as soon I move from ITU to the ward. Feeling good and healthy but looking forward to be tube free an start talking once they remove the tracheostomy. Expecting to be in the ward tomorrow evening.

All the best everyone. - please let me know if I can be of any assistance.

Thanks,

SMSM

Hi there, how are you doing after the op? 

So we got the diagnosis we were dreading yesterday, tongue cancer. The consultant reassured us that it's small and localised and hopefully just minimal surgery will be needed. He had an MRI and CT scan done yesterday and we'll go back Friday to get the results. 

I think surgery might be as early as next week, can I ask how long you are expected to be in for? I guess we have to prepare for extensive surgery like yours as they said even if it hasn't spread to the lymph nodes then it might be best to remove them anyway. 

We are both still in shock really but trying to keep it together! 

Wishing you a good recovery, would be great to have updates as comforting to hear other people's stories. 

thanks, x

Hello there and very sorry to hear about the diagnosis. Hopefully the imaging will come back positive breing localized and small. Early detection makes all the difference.

Today is day 3 for me in the ICU and moving to the ward tomorrow to start recovery and rehab. Expected to be there for 7 days but I'm recovering quickly and might be home faster than expected no rush though. In the meantime I'm waiting to hear from the pathologist whether additional treatment is needed (fingers crossed).

Today they have removed the tracheostomy and I'm breathing well and speaking much better than expected. Every one seems pleasantly surprised. No pain just slight discomfort and the neck feels well too. 

Stay patient and trust the surgeons and the system and stay positive we will all make it quick and strong. Please feel free to ask me anything or if I can be of any help.

All the best!

SMSM

Thanks, just a journey we'd never thought we'd be on but I'm sure you feel like that too!

Sounds like you are doing really well and great to hear your tracheostomy has been removed, I bet you feel so much better without that. 

We are under the care of a great team so we'll just go with what they say, just feels so overwhelming at the moment.

Have our next appointment on Friday afternoon so will be good to know what the plan is before the weekend so we can start to progress with everything.

Hope you get to the ward tomorrow! 

Hi LDDR

Its  a hard diagnosis to take in even if your a bit prepared.

After the ct scan you will be told the stage TNM best to hope for is T1N0M0.

I was told I would be in for a couple of days but ended up 6days due to post surgery hypoxia and also needed physio and occ therapist assesments due to neuro condt and living alone.

Recovery is fairly quick if its confined and small lesion,if he has neck dissection that takes a bit more time. I still cant get comfy on pillow at night as it gips a bit and can give shoulder problems.

During surgery tissue is sent to check for good margins. As in my case they had to go quite a bit further to get negative margins its really just a case of wait and see after op how that goes.

I was sent home with liquid feeds but I was determined to eat asap so soups ice cream jelly yohgurt was my starter foods then soft eggs and soon was on mash potatoes and gravy.

There are a few on here who had much bigger ops and chemo radiation, most are beyond the 5yr mark now which gives you confidence in the Docs and treatment.

Try not to worry about the neck dissection its not so scary when its node removal. My husband had a radical neck dissection for +nodes and that involved removing muscles etc so much more involved.

I am hoping to see you on here in a couple of weeks saying how well it has gone :-)

Take care and keep well,positive too xx

Thank you for replying and sharing your story, I really appreciate it. I have read up on the stages now in the booklet so we'll just have to hope for a good one!

My partner is physically tough but he needs to get stronger in his mind as I keep telling him we have to stay positive as that will really help us.

I will keep you updated with how we get on.

thanks again, Lauren xx

Hi [@clara56]‍  / [@SW80]‍  and others,

Hope you are all doing great and having a lovely start of the week.

Today is day 9 post op and I feel very positive and happy about recovery in general.

While I understand each case is different, I thought it would be great if you can share your experiences on the below.

1) Neck revovery seems to be the slowest for me, it's still very stiff and casuing alot if discomfort and lack of sleep (unfortunately I can only sleep on my stomach). I have started slowly doing the physio therapy excercises. How long it took for the sweeling to go away and anything in particular you found useful.

2) While im very happy with my speech at this stage, my lips difinetely are not moving as before as well as the mouth opening. I will start wth the Speech Therapist on some excersices but again your thoughts would be highly appreciated.

3) My tongue movement is great within the mouth but very limited beyond the lips. Does that get much better with time or given the flap it will always be like this.

4) I'm currently on pureed food and sometimes I enjy it and sometimes I  just get tired and stop and gor to the protien shakes. What was your experience going through different types of foods builidng the confidence and going back to as much as normal as possible.

Thanks for all the support, you have been great during this journey.

SMSM

Hi there, great to hear you're feeling happy and positive, I hope you've had a good week and are feeling stronger every day.

Update from me, my partner had his partial glossectomy surgery yesterday and is now at home recovering. He's finding it hard to speak at the moment but that's to be expected. We go back next week to get pathology results but so far they have said it's a T1N0M0. I'm sure he'll have a neck dissection further down the line but we'll deal with that when it comes around! 
 

Happy weekend all 

Hello Lauren - good to hear from you and very glad they managed to do the surgery quickly before it has spread more. You must be releived it's done now and trust me only better to come. I'm hoping the pathology results will be OK and no adjuvant therapy will be needed.

I'm doing well but unfortunaltely they found cancerous cells in I beleive one node (I am getting the detailed report on Monday) and will need to do 6 weeks of radiotherapy.

Not ideal but I'm sure I will fly through it and will be back in no time.

All the best of luck and love you yourself and your partner and let me know if I can be of any assistance.

Have a nice weekend!

SMSM