Hi, my dad has stage 2 mouth cancer on the floor of his mouth. He's having surgery at the end of October to remove part of his tongue, the floor of his mouth, teeth and gums. I'm trying to be as prepared as I can for when he's recovering so moving him into my house, buying a blender etc. but I really don't know what to expect or how to contemplate what he's going to be like, how much pain he'll be in, whether he'll physically look any different. Any advice/information would be greatly appreciated! The more info I have, the less stressed I'll be. Thanks in advance Smiler
Original Post
I belong to a head/neck cancer support group. A number of people there have had this type of surgery. Tell him there is light at the end of the tunnel. The surgery is arduous but the people I know have been extremely positive.

Muscle tissue maybe required from the forearm to transplant into the mouth/jaw area. Some problems chewing/talking properly afterwards etc.

Sustenance will be required form fortified drinks - fortisips etc

Mentally he will need support - antidepressants see the GP etc - I am on them now - they help me now and they helped me 12 and a half years ago (2 years taking them after my RT finished).

It takes time to recover - take slow steps - the people I know enjoy life now. Some have a slight speech impediment and/or difficult eating. But they have all moved on from the cancer and are happy.

Good luck to you and your dad - you're a fantastic daughter - your support will mean so much to him.

regards tony k
Hi Rachelruby,
Following on from what I said it does seem that your dad is going to have reconstructive surgery. These ops can be quite lengthy but he will be in a specialised recovery ward until he gets over the worst.

Once he gets over the worst of that he may well require radiotherapy. Again that's quite arduous and your dad will feel he's on the NHS conveyor belt. It's tough but very doable.

For me - the hardest part was when that treatment was all over - what next! Then it became mentally traumatic.

But here I am nearly 13 years later - plenty of ups and downs - but doing pretty well overall.
Your dad will have a dedicated team giving him plenty of aftercare - nutritionists and other therapists probably. - it's all a big help.

regards to you and your dad tony k
Hi Rachelruby, Tonk K has said much of what was my experience I was stage 4 after being misdiagnosed for months.You Dad stage 2 so hopefylly the experience will not be as bumpy.
I read in Tonys mesage " mentally tasaumatic" yes I have my mad moment but thioguht that was only me.I went through it alone with help of a fantastic Maxiolfacial team Head by Mr k at UCLH London. I guess your Dad is goin glocal for his op. I widsh him and you the best and a prayer I say for you tomorrow .Just be there for him and be positve.
Hi RachelRuby

I was diagnosed and treated earlier this year for HPV mouth cancer and whilst I did not require surgery I did under go chemo radiotherapy.

My Oncologist was amazing and was able to breakdown for me how I would be feeling week by week throughout treatment and beyond. This helped me prepare myself for what was ahead. However the biggest help for me was the positive mindset of the family and friends around me. We were told that everyone's experience is unique to them and so my loved ones readied themselves for whatever reaction I was going to have and just encouraged me through it by keeping as much normality in our lives as possible.
By staying strong you well help your dad stay strong.
Good luck and God bless
Paul
Hi Rachel, I hope this is not an intrusion, but I am concerned for your Dad. How is he doing?
I am 74 years of age next month and had tongue cancer. I had part of my tongue removed June 0f 2015. I had radiation therapy. Removal of some lymph nodes to check for cancer cell that may have began moving. All was clear but left with Lymphedema. None of it was fun, but today I am alive and continuing progress.
I am mainly writing to let you know, there is light at the end. Tell your dad the biggest thing he and all of you folks around him is to be and remain positive and above all thankful.
Hope all is well with your Dad and yourself.
I have just recently joined this web site looking for someone who has gone through with what I have.
Mike
Hi Mike, thank you for your message. Dads surgery was 2 weeks ago and he’s recovering amazingly. He surgery was no where near as bad as we were told to prepare for; no feeding tube or tracheotomy, he was able to talk straight away and has been on a soft food diet. Thankfully the cancer hadn’t spread so it was just part of his tongue, lower mouth, gums, teeth and jaw that had to be removed. He has been staying with me but has now gone home to finish his recovery. We have his first follow up appointment on Wednesday where we’ll find out if they managed to remove everything and whether any further treatment is required but fingers crossed not. I’m really pleased to hear that you’re doing well after your treatment and for letting me know that there is light at the end of the tunnel. I think my dad has got off quite lightly compared to a lot of people so we’re very very lucky.

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