Tongue cancer

Hi MrsKiwi and welcome to the Online Community although I am sorry to hear about your husbands diagnosis.

A cancer diagnosis in the family can be such a stressful and challenging time but I do hope you will find the community a safe place to get support and ask your questions.

The Community has various support groups (discussion rooms) so can I suggest you consider joining our supportive Head and neck cancer and Lymph nodes, secondary cancer groups. These are safe places to talk to others who may have a similar diagnosis, treatment experience, to ask questions and talk with others who are supporting family and friends on their treatment pathway.

I see that you have already joined our Carers only group. This is a good place to connect with others who are dealing with the practical and emotional challenges of supporting family.

If you'd like to connect in with a group click on the Green (Bold) links I have created above. Then once the group page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."

You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go. You could copy and paste the text from this post into your new post.

Macmillan have many support services so do check out the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. These services provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. We also have our Ask an Expert section but do allow a few working days for a reply.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and provide support for all the family.

Give me a shout if you need further help.

Best regards ((hugs))

MrsKiwi said:

Hi everyone, I’m new to this group. My husband has been diagnosed with tongue cancer, his pre op assessment is next week and will find out if re-constructing from his arm or cheek. He also has to have right lymph nodes removed. I’m scared to say the least. Does anyone have experience of this and road to recovery etc? Thank you I’m advance

Hi Mrs Kiwi. Mike has pointed you in all the right directions. I'm Dani. I'm a three and a half year survivor of tongue cancer and I live in the

Head and Neck Cancer Group

Come and say hello. Just click on the link in red

There's lots of experience and friendly help there. 

Hi Mrs Kiwi

only 9 weeks ago this was me and my husband was diagnosed with tongue cancer after routine trip to dentist. Everything went very quickly from biopsy to the pre assessment for the op. I remember sitting there trying to be brave as the consultant told us what needed to be done and how horrific it all sounded. There were macmillan nurses in with us who were fantastic at putting us at ease. My husband only waiting 2 weeks from that appointment before he was admitted into hospital for the op. It took 13hours and he had a free flap from his arm. The op went very well and the care he received was excellent. He was in two weeks firstly in icu and then moved to another ward. He had lots of drains and tubes but wasn’t as scary as I had imagined in my head. He had a trachy for a week and half and feeding tube which he hated! He is now nearly 6 weeks post op and recovering very well, he is talking well but does get tired and speech slurs towards the end of the night. He is still on purée food but this is mainly because he had to have his back teeth removed so he can’t chew! We are now waiting for radio and chemo to begin which he is quite worried about as he knows it’s going to be painful and tough. However, he and I remain positive that we will get to the end and ring that bell! If you want to ask any questions please do, I know all the emotions you will be feeling right now. 

Hi, thanks so much for replying!! We have his op date now for 5/9, he’s in so much pain now he just wants it done, he’s having same as your husband but don’t know if he will need further treatment post op. I have been on emotional rollercoaster, he seems to be handling it better, mostly. It’s the unknown. Everyone we have had appointments with have been amazing. They are a lovely team for sure.

Yes, my husband has been so much stronger than me too!! However, he said that he just knew he had to get it done - didn’t have a choice. For me I was dreading seeing him after the op but I got this inner strength from somewhere (don’t know where) and found I was the strong one and telling him he’d be fine! My husband was on so many pain meds and antibiotics and sooooo emotional. He never cries but he did a lot in that hospital! You will find strength honestly and once you get the phone call that the op went to plan you will know that he has got rid of the tumour. My husband had neck dissection too, you honestly can not see the scar and they went side to side under chin. The scar is in the crease of his neck - totally unnoticeable. The reconstruction site (forearm) has taken some healing and still is getting better. Looks like he has had a fight with a shark!! He has found this the most painful and the thing he can’t look at until last few days. But your husband might be different! Mines a bit squeamish!! 
I don’t know where you are in the country but we are under York hospital and have nothing but praise for what they have done so far. This must be one of the most invasive cancers as it affects speech and eating/swallowing. My biggest advice to you at this point is to rely on good friends to have a good cry and talk about how you are feeling. This really helps you to come to terms with what’s happening and most of all keep sharing questions/feelings with your husband as it allays fears and keeps you working as a team! We have two children at home 15/18 and they have kept us sane at times!! I am here if you have any worries/questions about anything and I don’t know if it would help but my husband is more than willing to email/text your husband as a support if he wanted to do that. It’s sometimes helpful to talk to someone who has just been through it. No pressure though as everyone deals with things very differently. Make sure you take care of you too x

Hi, that’s so lovely of your husband to offer, thank you.

I am the same, wondering what will it be like post surgery, I worry about his ability to communicate and will he ever be able to eat solid foods again?

We are under the care of James Cook in Middlesbrough, they have been amazing. We are so lucky to have the NHS. 

My husband has another appointment for a further pre op assessment where they will give further info on procedure and eating post op, I feel we are being drip fed, pun intended

Dud they give you an idea of your husbands time off work? They have said at least 3 months.

Hi

Cant believe we are in same part of country! We live in Scarborough! 
As far as the communication is concerned I’m amazed at how much my husband can speak and could even with the trachy in. There are sometimes occasions when he says something and I don’t catch it but we get there!! I think it depends where the tumour is on the tongue my husbands was front right side and has a lovely reconstructed half a tongue. It really is amazing, but I know you won’t be feeling that right now.  He can still taste his food which is good but can’t deal with solid food. This will depend on if your husband needs teeth taking out. Due to radio and chemo further down the line my husband had to have his back teeth taken out, so he can’t chew! Eventually after treatment he’ll have implants. 
my husband is self employed and originally we were told he’d be out of work 3 months. When discharged from hospital he was told 12 months and 18 months before he feels back to normal. He finished work 25th June as he felt he couldn’t continue as needed to mentally get ready for the operation. Had the op 4th July. Been out of hospital 4 weeks now and there is no way he would be able to work as very tired and finds things difficult as his left arm is weak due to the reconstruction. His round of chemo/radio due to start 19th September for 6 weeks. (This is a whole new level of worry and rubbishness! We have to travel to Hull every day!) He definitely won’t be back to work until after Christmas and even then I’m not sure he’ll manage full days. Is your husband self employed? If so macmillan put us in touch with a cancer citizens advice who were brilliant and told us what we could claim for. It’s not much but better than nothing.

Morning! We have been told 3 months at least, he’s not self employed and will only get sick pay which is a worry. Consultant told my husband to just park the info about possible chemo and teeth removal as everyone is different but I feel they are definitely trying to just give little info at a time. I’m struggling at the moment, very emotional but hormones not helping either. We are not far from you, Hartlepool.

Hi MrsKiwi, I just noticed you post.

Could I strongly recommend that you get a full Benefits/financial review done. This can be done at a Local CAB office, Hospital Macmillan Information Centre or call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 and talk with our benefits/financial guidance team.

I was very sceptical about us getting any help but the Macmillan Adviser opened up doors that I did not know about.

Hi Mike, thank you, I will do that. Appreciate your post.