Im in England and have just registered on here. I am in the early stages of just taking in the recent diagnosis of my husband with T4 SCC of mandible and ? node involvement. He was diagnosed on 4th Aug and we are awaiting an iminent date for his (14 hour) surgery - bilateral neck dissection, removal of 4cm tumour in mandible and creation of flap from chest wall, creation of tracheostomy and PEG feeding tube insertion. Im scared stiff and not coping at all well. Am on sedatives and signed off work right now. The surgeons have said (because I was stupid enough to ask the question), that he would only have months left to live if he did not have the operation - however he is STILL smoking althought trying to cut down. I feel as though our whole world has caved in and turned upside down and shaken out. We havent even been married 5 years (I am 47 and he is 60) and I dont want to lose him. Im so scared. I hope and pray we can get through this. Im not normally negative but Ive been so useless and keep breaking down all the time. Hopefully the diazepam will help a little. We are due back to clinic tomorrow morning so maybe then, we will get a date for Harald.

Any advice anyone could give me I would be most welcome of.

Judith

My husband had a similar operation last September 17. He was in surgery for 12 1/2 hours. He made it through but there were times I didn't think I would. He probably will not remember much of his stay at the hospital due to the pains meds he will be given. He will have to be kept comfortable with minimal head movement so he will probably be kept calm. My husband, Neil, doesn't remember the hell he put everyone through. It will be tougher on you, so YOU must remain calm not only for him but for yourself. It will help you stay attentive to anything going on in regards to his care. I'm not saying it will be easy because it most certainly will not but the calmer you stay the better for all involved. You can do this, Sue

He MUST and I can't emphasize the word MUST enough, STOP SMOKING NOW, not tomorrow or the next day but NOW. I am not a doctor but from what I have witnessed first hand he will have virtually zero chance of survival if he doesn't regardless of what treatment he goes through. I certainly hope his doctors told you guys that. You have found the best Oral Cancer site in the world so listen to what we say and I guarantee he will have the best shot of pulling thru this.

Hello Sue Marie and David,

Thanks so much both for writing back - I cannot tell you how appreciative I am because Im signed off sick from work now and climbing the walls with worry so to know there is someone out there and who has responded is amazing for me. Thank you so much. I think Im going to find it daunting seeing all the tubes he will be attached to post-op and they have said he would not be able to speak because of the trachy in place for about 10 days. Do you think he will be awake post op after a day or two, or will they keep him sedated for quite a few days? They have said he will be in hospital for 2-4 weeks. I must admit, the continued smoking does bother me, but he has been trying to cut down but I take your point about him stopping NOW. Honestly, I do. If only he would listen to me. We are so different - I face things head on and I want to know so much information - as much as I can - and he is an ostrich and doesnt want to know a thing but I have said we are on this journey together so he needs to do that for me at least - stop the ciggies. David, when you said zero chance of survival, do you mean if he continues to smoke after he has had his op. or immediately post op? sorry to ask a blunt question. The docs have not said much to him about smoking - only that it would be ideal if he gave up. The word ideal seems a bit lame to me. They have said his chances of recovery immediately post-op will be better if he does give up, but they havent pushed it exactly. They have said (the surgeons) that 50% of all patients have complications post-op, infections etc. that is very worrying. My mind is all over the place today. My doc has put me on sedatives so Im going to have one now to see if that helps. Please keep your information coming - Im so thankful, really I am. Love to you both. Judith xxx

Judith-My husband was awake the very next day. He couldn't speak because of the trach and was extremely agitated and cranky(anyone would be). He also had a hard time with the ng tube they had put down his nose to deliver nourishment. He even went so far as to pull it out after it had been stiched in. The reason I'm telling you this is because it upset me far more than it upset him. He was in intensive care for a week and a half and then in a stepdown unit for a week. He doesn't remember much at all. They are on some intense medication and I could have used some myself. The nurses kept assuring me it was worse for myself and the rest of the family. Our children only came to see him once during the stay because they are teenagers and were truly upset seeing their dad that way. They help up wonderfully though thru this whole ordeal. Make sure you discuss any home care you may need for him. We didn't have any because my husband could get around on his own and insurance wouldn't cover it. I quit my job before his surgery so I was home to deal with it but if you work-you'll need some help.
Best regards,
Sue

I used to smoke, but have not had one since this beast tapped me on the shoulder. While we can never be certain what causes our individual cases, smoking is a known contributor. Also, any surgeon will tell you that smoking adversely impacts recovery time from surgery. Any patient going through this treatment needs to have every possible thing going for them, and continuing to smoke is, simply stated, suicidal.

You can't control whether he stops or not, but do your best to have the doctors tell him point blank the likely impact of his continuing to smoke. Hopefully that will do it. I did not need to be told twice!

My husbands doctor said that I guarantee that if you don't stop smoking the cancer will come back and your chances of surviving cancer will take a huge hit.

Chantix is a wonderful drug. It takes the desire away and would help your husband especially since he wont be able to smoke in his recovery from surgery.

Take a deep breathe but once treatment starts you should be a bit better emotionally speaking. Focus on the goal and hold hands. Cray

Judith,

I just read your post to me. You are acting just the way the rest of us did at this point. The panic has parked itself in your head and it wont leave.

I felt much better once the treatment started and we were focused on the goal and routine. Our nurses were so encourageing and that kept us going. My husband was not a candidate for surgery so I cant imagine the fears of a 12 hour surgery.

THe last 3 weeks of Radiation and Chemo were the worst and when the treatments stopped we experienced some more depression...the fear comes back and parks itself in your head. You start to feel helpless again. But with each day comes something new....like watching a baby grow up. My daughter called me the other day and said DAD ATE A TACO and we were both just gitty all day because our baby ate a taco. He loved spicy food and we never thought he would ever be able to eat his favorite foods.

There are still really bad days for us but you gotta get use to picking out the good and focusing on that. Laughter is found at every turn of your journey...seek it out and things will get better.

Let me know if you need anything and I will be thinking of you both! cray

Judith,

I just read your post to me. You are acting just the way the rest of us did at this point. The panic has parked itself in your head and it wont leave.

I felt much better once the treatment started and we were focused on the goal and routine. Our nurses were so encourageing and that kept us going. My husband was not a candidate for surgery so I cant imagine the fears of a 12 hour surgery.

THe last 3 weeks of Radiation and Chemo were the worst and when the treatments stopped we experienced some more depression...the fear comes back and parks itself in your head. You start to feel helpless again. But with each day comes something new....like watching a baby grow up. My daughter called me the other day and said DAD ATE A TACO and we were both just gitty all day because our baby ate a taco. He loved spicy food and we never thought he would ever be able to eat his favorite foods.

There are still really bad days for us but you gotta get use to picking out the good and focusing on that. Laughter is found at every turn of your journey...seek it out and things will get better.

Let me know if you need anything and I will be thinking of you both! cray

Those little victories keep popping up -- that taco observation made me laugh. Just last night we were out at a board meeting for a local organization, at a place known for its wings. Before my treatment last year, I loved fairly hot sauce on my wings. However, spices were out for a long time. A few weeks ago I graduated to Medium, and last night had my first wings with Hot sauce, and it went great!! My wife smiled, as she knew that was a positive step for me.

You will discover those little victories as well. Just savor each small step, and the bigger ones will take care of themselves.