Cancerous tumour on floor of my mouth

Good evening Garryj, as the others have said it's very early days and healing is only just beginning especially with the skin grafts. Im impressed as i did not realise you were 75, i was 48 when i had my floor of the mouth operation and i would say 3 months is quite a safe bet for things to have settled down. You don't have to have radiotherapy, i had radio and chemo after my operation and to be honest, i did not suffer that badly but as we always say people are different in the way they heal and recover. All the best for Wednesday,take care.

                                                                                        Chris

Hello again Chris, old age is a privilege  not awarded to everyone. I intend to hang on to that privilege for as long as I can.

but it’s the quality of the life I have left that becomes the focus. I wasn’t sure if you could tell the doctors that although they recommended radiotherapy that you were refusing it. Everything I’ve read makes me think my body has taken a bit of a beating recently, and I’m not sure it could take a pounding from radiotherapy. It comes down to risk / reward. Fingers crossed they say it is not necessary. I’ll let you know.

thanks everyone 

Hi Garry

At 17 days you have made an amazing recovery from such radical surgery.  A doctor friend of mine advised me before I went down the surgical route to expect one month of recovery for each hour I was under.  Physically the scars heal quickly, but the body still requires that added time.

It is good to push yourself.  Exercise and fresh air will certainly help reduce that total time.  However, listen to your body and if you need an afternoon nap or a duvet day then take it rather than fight it.

I still get tired even after over a year since my last surgery.  It just happens.  It is frustrating as I want to get on a do things.  You just have to ride with it.

I personally found that most of the side effects (especially from the dissections) were gone after around 18 months.  I still have some, but they are not life limiting and you learn to adapt over time.

Small steps.  Expect a few backward ones, but you will get there.

Hi, well done for getting this far. The surgery is brutal but youre on the other side now. 
i had similar sugery, tracheostomy, neck dissection and flap to restore my soft palate. Your trache site will soon heal. Remember to hold the hole when you speak. Think mine took 3 weeks to close up. Keep doing your exercises and let your team know about the shortness of breath when laying down. I cant recall being short of breath but there are so many possible factors that may be contributing to this its best to let them know. May just be exhaustion. However, if youre trache hasnt fully healed theres a small possibility it may be affecting your swallowing and some fluids are going down the wrong way, leading to a chest infection. Get checked! 
You will get there it just takes time. Is a massive op you have had and you sound positive which really does help. Get plenty of rest and i wish you all the best. 
i ended up with radiotherapy to mop up any microscopic cells to to br sure all gone hopefully. Its hard but you have to do what you have to do. I just did what was recommended by the experts. 
good luck with it all 

Elaine 

Thanks,

one my main concerns right now is if they say you need radiotherapy, I’m not sure my body could take any more intrusive treatment.  I am tired beyond anything I’ve ever known. I consider myself lucky that I don’t have pain, I can swallow a whole glass of water in four gulps, I’m eating blitzed food, and my wife is an absolute diamond. My MDT next Wednesday is with the oncologist not the surgeon. That indicates to me radiotherapy. And I’ve spent too much time checking out Dr Google. Scaring myself. 

Garry if you need RT then honestly you will get through it. It will save your life. Fingers crossed for you 

Hi Garry please do yourself a favour kerp iff DE Google unless you kniw where to look you’ll get every horror  story going and even more. Unregulated and out if date stuff are on there. I can’t lie radiotherapy wasn’t easy but it gave me my life back. I am still me warts and all. But it’s not a walk in the park but neither is it horrendous . 
If you take it one day at a time don’t expect too much too soon,  be level headed . Listen to oncologist they do this  day in day out. 
My husband got me through it am sure your wife will do the same

. I’m 4 years post treatment now I had 35 radiotherapy snd 2 chemo. 2 nights ago we went out for our daughter belated 40 th with our extended family. Including 3 step great grandchildren that I wouldn’t have met without treatment. Don’t be in too much if a rush either way but if you do end up with radiotherapy everyone on here will help. 
hugs Hazel xx

Sounds like you may be offered radiotherapy if you are seeing the oncologist. 
I would just see what they say. I really wasnt sure what to do as they got good clear margins with my surgery. However they cant say 100% that every single microscopic cancer cell has gone so they offer radiotherapy to mop up any stray cells. I went with what they recommended. However there has been times i wished id not had radiotherapy. Although i say that, at 52 years old, it wasnt an easy decision but i have a young daughter so had it to give me the best chance of survival. 
think you need to weigh up what is said and how you feel and consider how your quality of life is likely to be affected whether you have radiotherapy or not and the risk if recurrence.  We are all different. Good luck 

Elaine

Hello again Elaine,

 I can’t remember if I have already posted that I don’t need radiotherapy. Yet again the Gods have been good to me.

So here we are, 27 days  after surgery the tracheotomy hole healed from the inside out. The scar may take a bit longer, but it is so much easier to breathe.

I’ve given up painkillers, I can speak ok? Everyone says I’m speaking really well, but what I hear in my head doesn’t sound like me. However, I am on purée food and protein shakes. I’ve lost 7lb which has alarmed my dietitian, but who is going to stabilise only eating that lot?

So Elaine,  I would like your help please. Your operation sounds the nearest to mine. When I spoke to my dietitian today, I innocently asked how long did she think before I would be able to eat solid food? she hesitated, then said “ it could take some months you  need to speak to your surgeon “ As the conversation carried on, I sensed she was trying not to put into words that I may be on puréed food permanently.

Is that your experience? Or anyone else in the community whose surgery was similar to ours?

Thanks everyone,

Garry

Hi

so please you dont need radiotherapy, thats great news. 
you sound ti be doing really well. 
after surgery i cant fully remember but i think it was quite soon. I remember having a pureed meal on day 12 post op and from then gad soups, soups, soups. Muller rice, fortisips in between, mashed up banana, scrambled egg. Mash, fish and sauce, mushy peas. My op was on 21 December and im pretty sure ivwas coping with almost normal foods by the time i started radiotherapy in March. Unfortunately, i found radiotherapy much Worse for eating and drinking and effects lasted longer. So you are a lucky fellow not to need it. I just kep trying different things, i binned a lot but you dont know unless you try! Good luck with it 

Elaine x