My husbands surgery

Hello Paula

so sorry to hear about your husbands diagnoses

My Dad was diagnosed with mouth cancer in May and had his surgery 2 weeks ago and is already home. He had part of his jaw removed and replaced with a bone from his leg - I am not sure if your husbands surgery is similar

We also wasn’t able to see Dad before the operation and couldn’t visit in hospital. It was really hard for us at home but my Dad actually said it really helped with his recovery to not have any visitors as he was solely able to focus on himself.

Try to focus on the fact that the first few days your husband probably wouldn’t be aware if you was visiting and once he starts to recover he will have lots to do with nurses, doctors, dieticians, physios and will also be exhausted so will be resting a lot.

The ward and Macmillan nurses were amazing while we wasn’t able to visit or speak to dad - you can call any time which really gave us reassurance. Don’t be afraid to call or think you are bothering anyone

We are still going through this and is still very new, but if there is anything else you would like to ask please don’t hesitate 

Hope you are okay, take care

Sophie x

Hi

It may help others answer some of your unasked questions if you can let us know what surgery he is about to undergo. 

Many of us have had surgery as part of the process and can help you better understand what may happen and the likely recovery process.  That may help you in getting prepared to support your husband and manage your expectations of communication whilst he is in hospital.

There may be a few who have had recent surgery and can tell you what it is like in the hospital at the moment.  Mine was before the lockdown, but I have been back into the hospital during lockdown for outpatients and to support a neighbour with his cancer treatment.

My local hospital is taking a pragmatic approach; encouraging patients to attend alone, but recognising that sometimes support is needed.  I also know that the nursing staff will do all they can to help ensure contact for the lone patient.  After all, it was not unusual for patients to be all alone in hospital prior to lockdown for all sorts of good (and bad) reasons.

That said you don't have to elaborate if you don't want to - just ask questions as you wish and we will offer advice and support.

Whatever you choose, good luck to you and especially your husband.

Hi Sophia, thanks for replying. First of all, I hope that your Dad is feeling better. My husband has it at the back of his tongue and the throat. Firstly, they will go into his neck under his ear, to get to his throat. Then they will have to open the front of his jaw, splitting the jaw, to allow for access to his tongue. When they have removed the infected area, they are using a flap of skin from his arm to cover the hole.

At the moment we are not sleeping very well, and he isn't feeling to well. There is blood coming from the back of his mouth, which is causing him to worry more. I am trying to be strong for him, I feel I can fall apart once he is in hospital, then get myself sorted for when he comes home.

Please give my best wishes to your Dad, and once again, thank you for replying.

Hi Peter, thank you for replying. His surgery is at the very back of his tongue and his throat. They have to go in through his neck, under his ear to work on his neck. Then they have to open the front of his jaw to access his tongue. Once they have removed the infected area, they are using skin from his arm to cover the hole. 

To me it sounds horrific, and I understand him being frightened, but he doesn't want to talk about it. He only wanted the basic information about the surgery, he couldn't take anymore on the day. He gave permission for me to talk to the McMillan nurse, which helped me. I have told him I am there if he does need to talk, but I thought it best to let him handle it his way.

I hope you are well, and thank you for replying.

Good evening Paulapud, thanks for updating us on the treatment plan. All this sounds horrific but i have had similar operations to do with the jaw and skin grafts etc. The consultants and their teams have been doing this sort of surgery for years now and they are so skilled with good success rates. I went into most of my operations with very little knowledge and like your husband, i just wanted to know the basic treatment plan. This helped me have a more positive response to it as i think the more you think about things the worse they get including the side effects, my consultant used to say if you look at all the side effects listed you would never go ahead with the operation but they have to give you this information even it happened to one person in a thousand.You and your husband will find that the mouth will heal up quite quickly after the initial swelling has gone down, i found the bit that caused the most aggro was where they took the skin from my arm,it took the longest to heal but they do say the body will heal the worst affected area first.I found the pain manageable with the correct pain killers if needed, again my worse pain was after a biopsy and not the operations. Some people say its easier going through an operation rather than radio or chemotherapy as it can get a bit uncomfortable.

         You have done the right thing in and letting him handle it is way, my wife did the same with me and i did her help as time went on "as its not a walk in the park but doable" another quote from my consultant. Once the ball gets rolling everything will slip into place and come together with the help of the fantastic N.H.S  I hope this has helped if not please come back with any more questions, concerns, worries etc and we will try and help you get through this difficult time. Please remember this can affect you as well as your husband being his carer, so look after yourself as well as there is help for you out there also.

      I wish you and your husband all the best with this journey it will have good and bad days but on the whole it's not a bad experience. Stay strong and positive, take care.

                                                                            Chris xx

hi paulapud

 im in sheffield hospital at the moment , i came in on the 4 of july,and my lip split mandibulotomy on the bace  of the tongue was due on the 8,well im still in ,had no op due to complications,and im heart brocken because of the familly situation with this covo19 crap,but the moral of this story is members of my familly txt all the time and it brought me back from level 10 upto 90, and for one moment i feel down ill read one of the dozens and dozens ov txt and sure enough a little smile appears on my face ,,hope it helps yo

Hi hugg, I'm sure you will not be long now, they are just making sure everything is in order before they proceed, thank god we have modern technology to help us communicate. Hope the meals are ok for you in the hospital .Take care .

                                                                                  Chris x

Hi

Like all surgery it sounds horrific and it is certainly more extreme that I had to undergo. I suspect to say he is worried is an understatement.  However, most of can dig deep once some of the uncertainty is out the way and cope with what is happening.  Often it is the friends and family who suffer the most as they are "just along for the ride" whilst you husband has some measure of control over the situation.

I'm glad you've managed to find support from the Macmillan nurse - and don't forget your own GP.

We're here if you need us and would welcome your husband should he wish to join the "club nobody want to join"!

In the meantime good luck, and continue being there for when he is ready to talk.