15 years ago my husband had tongue cancer removed and a flap created from his thigh. He was successfully treated with surgery and radiotherapy. He was 24. No reason given for the cancer.
6 weeks ago- He had a wisdom tooth removed due to pain and an area of gum was biopsied. 4 weeks ago he was told it was SCC stage 1 and the plan was to remove a section of jaw and rebuild using his fibula, tissue and artery. He has had scans etc and on Friday we went for a meeting with the consultant. They told us the cancer was too big and too aggressive and was now stage 4. They discussed two options both of which seemed so brutal. He chose the radical neck dissection and partial lower jaw removal. We were told reconstruction was no longer an option and they showed us the scans. The surgery was planned for Monday and would now take 8hrs. At home we were in a daze and did not really process.
14+ hours later on Monday I got the call to say he’d made it through surgery and that the plan had changed. They have now been able to leave a stump of bone on the hinge and attach a plate to it. They’ve used his thigh to pack the area and left the nerve to his shoulder. He is medically doing well but mentally he isn’t engaging. He’s still in intensive care (no bed on the ward). We can’t communicate with him at all (twice daily message from us via his nurse). How can I help and advocate for him when he’s isolated from us all and it’s clear he just isn’t processing what’s happened/happening. We have 3 children who are missing their daddy and he must be desperately missing us. He will not / cannot FaceTime as he has a tracheotomy and does not want to see himself. He isn’t allowed a phone so can’t send a text. He was terrified of being in ITU and I understand his stay isn’t because he’s not progressing- but I don’t think it’s getting through to him.
Good evening Minitoffee, sorry to find you and your husband in this situation , some lovely relies from the other guys . I had jaw reconstruction where they removed a bone from my leg to make a new lower jaw bone using skin from several parts of my body to make up a gum. My operation was a totally success and once the swelling went down it looked pretty good considering the amount of work involved and the 8 hour op. Mine was done in 2009 a year after my first operation involving the floor of the mouth cancer plus a bit of my tongue. As you mentioned he will be in for about two weeks and once the trachy is out he will feel 100 times better, funny enough i never looked in the mirror to begin with, its suprising how quick the swelling goes down so it will not be long before he looking at himself . He seems to be making great progress and the encouragement will make a lot of difference especially as he now has a mobile and can text ,i remember those days but in better circumstances as i never had to take into account this COVID virus so i had visitors, but as you say the texting has made life a lot better for you all , i wish your husband all the best for his recovery and he could not be in better hands with you as is carer, also with the children helping out 
. Best wishes,take care and please re-post if you need help,advice or just a chat .
Chris x
Its sometimes not easy but its worth it !
Thank you for replying- I do appreciate the reassurance! I was very low last night worrying about his mental health. He has very little confidence in himself and I desperately wanted to support him.
You both seem to have a very similar history. My husband’s initial tongue cancer was when he was 24- 15 years ago. He has always been open about the best and worst of his experience, however we were shocked to the core at this new cancer hidden behind the wisdom tooth, found after an extraction. He was told in the meeting discussing the biopsy results that it was stage 1 and the initial plan was reconstruction using the fibula. Just over 2 weeks later we went in for the meeting to go over the plan and were told the scan 5 days prior showed the cancer was too big and too aggressive to do anything but the radical neck dissection and jaw removal. We had one day to process until he was admitted. The surgery was expected to take 8 hours. 14+ hours later we got the call to explain they changed the plan to give him a better quality of life. They left the shoulder nerve and decided to use a plate attached to the stump of bone left. You know it’s bad when the surgeon says the cancer was ‘frightening’ and he hadn’t experienced anything like it. He concluded by telling us my husband would not have made it 6 weeks.
I was concerned they had done the reconstruction and left the nerve as it was stressed to us in the meeting that this would not be possible. This is why I wanted to message my husband as I knew he would have the same concern. It was the first question he had about his surgery. I have tried to reassure him but will ask the consultant to explain himself tomorrow. My husband is also concerned as the swelling is now affecting his vision as his eye is swelling shut. He is being checked every 4 hours by maxfacs they say the swelling is getting worse but they are not overly concerned. They are hoping to remove the tracheotomy on Monday if he continues to progress. I am so proud of him. Your history and positive style of explaining your experience gives me hope. Thank you so much. I’ll continue to update here if you’re interested 
Thanks for the reply, yes i know there is quite a bit of swelling after this operation, plus the healing of the doner sites where they took skin and muscle, wow that was a bit alarming about the 6 weeks, im so pleased they are looking after him with the check ups and fingers crossed for the trachy coming out as i found it uncomfortable.If you click on my name you can read my profile if you want., yes please do keep us updated when you can, have a nice weekend, best wishes.
Chris x
Its sometimes not easy but its worth it !
Please do steer clear of Dr google as it can frighten you because its so misleading ,yes you should get check ups every two weeks to begin with,the first one will be to explain the results of the operation and they should say how successful they have been in removing the tumour, some consultants will do another scan but mine did not maybe this could be one of your questions. I will think of some questions you could ask. So your hubby has got a soft lower jaw rather than one like mine , its so clever what they can do nowadays and it certainly gives hope for the future. I was going to say you are right to be proud of your hubby , he has done well and overcome many worries i expect along the way. I will post some questions tomorrow,
Chris x
Its sometimes not easy but its worth it !
Hi again, sorry there was no update yday - we don’t do things by half in the toffee family. Middle toffee (10) was admitted to hospital yesterday (a different hospital to BT) with a medical issue. Nothing serious- just reoccurring but it meant a sleepless night next to her and missing our evening update with ICU for BT. We finally got home at 7pm tonight with a referral to a children’s hospital. Eldest toffee (12) spent the day with my in-laws and littlest toffee (7) with a friend. Currently tucking them up in bed.
BT has made amazing progress the last 2days. I couldn’t be prouder. Every team is pleased. He’s had all the drains and wires out now but the cannula and nasal-gastric tube. He has been sat in a chair a few times a day - and had his trachy out 3 days early!! He’s coping okay. Coughing up a lot of yuk that they’ve had to send samples off for analysis as it doesn’t look ‘right’. His temp was up concerning them so every sample possible from the tips of wires has been sent away. He’s convinced the room was too hot so made them turn the thermostat down this morning. Since then his temp has been normal 
Best of all I asked if he was brave enough at 3am to show me his thigh or something- I nearly dropped the phone when he FaceTimed me- it was only for about 15 seconds as he can’t speak. It was poor lighting but he showed me his face. It looks amazing considering he wasn’t supposed to have a lower jaw. It is very ‘fat and round’ - like no definition of the jaw and the eye and lips are stretched but it will definitely shrink a bit. BT pre-surgery had a sunken face so we look forward to getting to know his ‘new’ face. One of his fears pre-surgery was people staring at him. Right now, once the swelling goes down, a stranger could pass him and not think twice other than he looks like he’s on medical steroids or something. Someone who knows him would obviously see the change. However- what the surgical team did was amazing - he’s got to be made up!! I tried to explain to the kids he looked like a hamster who has stored cake in his cheeks, but I am so tired I actually said ‘he looks like he ate a hamster’. Oops - made the kids laugh. BTs words for the day are ‘today is a good day’ I hope everyone else is well
MT xx
What excellent news. One day at a time and you’ll be surprised how quickly he will be home and your new lives take their first steps I’m so pleased you are in touch. Fingers crossed for all the other toffees.
I hope your GP has stepped up and organised nursing help at home.
Keep well yourself and make sure you have a little me time to recharge.
xxx
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
