Mouth and jaw cancer

Hi, Tiadora I wish you luck. Like you say you will be in good hands, it is very scary when you get your results and treatment plan, you will feel better about things when your treatment starts, there are many on here who have had similar to what you are going to have, hopefully one or two will give some advice. I hope you can get your move sorted out quickly, not what you need at this time. If you have any worries or questions just ask on here, we are all here to help each other. All the best.

Regards Ray. 

Hi Tiadora. I will tag chris2012 one of our community champs sn sure ge will pop along in next day or so. He’s faced your type if surgery. Best advise I can give take each day as it comes don’t plan too far ahead everything will fall into place good luck with the move. 
Hazel x

Hi Tiadora, boy oh boy do I know just how scared you are feeling! I was in the same situation just over twelve months ago, exactly the same scenario - gum, jaw, lymph nodes. Fibula from left leg to replace part of jaw (amazing to me how it doesn’t actually affect our walking) skin graft from thigh to give me a gum. My cancer was on the right side so had seven teeth removed during the surgery, ng tube fitted also during surgery, neck dissection to remove lymph nodes - 29 removed but only two inflatrated. Intensive care for a couple of days but I was obviously on another planet as I have no recollection of that, but we are all different, as another patient told me she had been watching films on her iPad whilst in IC and was very bored. I elected not to have radiotherapy as it was not curative for me and the percentage difference on the stats I personally didn’t feel was enough to undergo, at that time anyway. I was pushing 78. The medical team did a wonderful job! I imagined my face would look very different, but apart from a slight drop when I talk or laugh on my mouth on the left side otherwise okay.  The leg has healed well, as a guy on here said a while ago, he  refers to the scar as his shark bite, I can go along with that. Still have numbness around the jaw and chin area, Lymphadeama a nuisance but you get used to it and not everybody gets it, ear from neck dissection still feels a bit weird but that has improved as time has gone on. All very best wishes to you, if I can help with anything, ask away.  
June

Good evening Tiadora, sorry to be reading this, I had three-quarters of my lower jaw bone removed in 2010, it's a big operation as there are bone and skin grafts involved as well as no teeth in my lower jaw. All in all, it's surprising how well the body recovers and adapts to it all including the leg where they take the doner bone from, they also took skin from my stomach to bulk out my new gums. Of course, a lot depends on how much they have to remove, we all recover at different rates and have different pain thresholds but it will take a good three months before everything settles down and the new bone grafts become strong enough to eat, etc. I think the most uncomfortable part for me was having the tracheostomy as it takes a bit of getting used to, I think mine was removed after two weeks. It all sounds scary but take things a day at a time and it will come together and as you say you will be in good hands with highly skilled surgeons. nurses etc who will do their utmost to rebuild your lower jaw. Try and avoid looking on Google as it will make things sound ten times worse as many have found out on here. Take plenty of things in with you to keep you busy i.e. laptop, phone, books, etc as it will help pass the time of day, I was lucky as i was in a side room and had my own tv and bathroom for most of my stay in the hospital. Stay positive as I'm sure you will get through it ok, wishing you all the best for this operation and recovery, take care.

                                                                                        Chris x

Hi Tiadora

So sorry that you have to go through this op. and the added pressure of having to move house.

Chris and June have given such good advice, it does seem very daunting but if you take it a day at a time you will get there. I also had jaw cancer but had my upper jaw removed so not quite the same op but I do understand the anxiety and concern about what the future will hold. I also had a temporary tracheotomy while in ICU but it was removed before I went onto the ward. I got quite good at hand signals indicating that I was too hot or too cold and the nursing staff eventually got me a small whiteboard so I could write things down. You will feel pretty woozy for a while after the op as the anaesthetic makes you drop off to sleep just like that for a while. When the physio comes around to get you out of bed resist the urge to say no that it is too hard. Just go with it as the sooner you get walking the sooner you start recovering. Sit out of bed as much as possible although again it is hard to motivate yourself as you may feel so tired for a while. It all makes a difference and hastens your recovery. I was in ICU for several day, 5 I think and it can get boring when you start feeling a little better. Take your phone and have an ap such as Audible although I found listening to stories used to send me off to sleep which maybe wasn't a bad thing.T.V. helped to pass the time although the programmes available were not wonderful but better than nothing.

It is now a year since my last maxillectomy and I am getting on well and have just had reconstruction surgery so things are definitely looking up. I feel fine and have adjusted to the changes and am getting on with my life and enjoying it and you will too. It just takes time.

All the best

Lyn

THANKYOU so much ray I’m maz by the way 

THANKYOU Lyn it’s made me feel better reading all the comments x 

thanks Chris knowing people that have gone through this is a lot easier for me now  maz x 

hi June we are around same age it’s lifted my spirits reading your story THANKYOU x maz 

Thanks Chris for your story it’s helping me a,it maz x