My brother has had four major sugeries, three being this year.
Four years ago cancer found on left side of tongue. Small section of tongue removed received radiation.Cancer back in early '09. Half of tongue removed and lymph nodes on both sides removed. Flap built from leg and forarm. 35 radiation treatments. Never recovered from radiation before severe debilitating headaches started. MRI showed no cancer. Headaches continued getting worse each day. Finally PET scan done. Cancer returned. Removed tongue and built flap from back. Home from hospital doing most treatment with visiting nurse. One week later, Flap became infected, emergency surgery to remove flap and rebuild another flap from left chest. Should be out of hospital but is still in rehab. More surgery because wounds won't heal on chest. Fake skin put on chest wound that won't heal. Trac still in, some drooling. He is giving up. Has anyone been through this much? He is down to 131 lbs. All he wants is a drink of water. Goes back to Dr. next week, is begging to go home. Is there any hope of drinking water, talking, etc.
His dream is to just get back on the golf course. I am concerned that there is no hope for his recovery.
I don't live in the same state and try and go every few months to visit. Has anyone been through this much? All of this from a small spot on his tongue and was told numerous times that it was nothing. Help me understand.

Danae,

There is always hope dear, if we don't have hope we have nothing really. Your brother has been through a lot there is no question there...have others been dealt similar hands? Yes. With tongue cancers, it seems a trend to be very hard to knock out, especially if the kitchen sink weren't thrown at it from the start (ie chemo/rads/surgery). Even then there's no guarantee.

What I would say is that there still is a life even if he can never eat or drink again. Charm2017, a member of these boards is in a similar position, several recurrances and can no longer eat or drink...still takes his wife on vacations and dates etc..and even though I don't believe he's the golfing type, he could still get out on the course and throw golf clubs at people

So Danae, there is hope, I would have your brother sign onto these forums and get support from those that can relate to him. I draw strength daily from the wisdom and experiences from members like Charm and others. We may not know if this cancer will end up taking us or not, but we can hope for more precious moments in life. I recommend him reading Viktor Frankle's book, Mans Search for Meaning...it help put life in perspective for me. That and listening to the warriors on these forums that have been dealt horrible hands yet still choose to play the game and fight.

Best wishes to you and your brother.

Eric

i cant say it better than eric...sometimes all we have is hope.

does ur brother have a caregiver..someone at home with him? this is the time that the caregiver has to push him thru. and if he wont get on this site...let the caregiver know to get on...so ur brother knows there are "others", he is NOT alone.

some on here get thru treatment without too many complications and this is all just a distant memory. others, like ur brother, have been dealt worse hands and have alot of complications, but with this site and all the wonderful support...push thru each day.

it must be tough not living close to ur brother. i feel for u on that one, but u sound like a very caring person...so continue to lend ur support.

best wishes to yall.

Eric, thank you! Getting your response is exactly what I needed. I have been trying for quite a while to get him to sign on and share with all of you. I am more determined than ever to get him active in corresponding with the site. The information you share is realand honest. I can only listen and encourage him. His main caretaker is my Dad who is 85. There are also many caring friends and family. We are hoping he will get out of the rehab soon. There is one more surgery that is being scheduled to take a band off of his flap. Not sure what that means but we are told it will not be a long procedure. Again, I so appreciate your kind words.

Teresa,
Thank you for your thoughtful words. Indeed, the most difficult part is not being close enough to spend time with him and to care for him. Faith and Hope are what keep us going.
danae

Danae, I'm just glad I could help. Keep your spirits up and use these boards for support and information as you need.

Best Wishes

Eric

Dannyboy went out playing golf with a PEG tube and Digtexas did as well. Has he seen a counselour for depression. It is very common at this stage. Skin grafts and flaps are tough. Flaps do make swallowing challenging even if they don't fail. There main purpose is bulking up the area where the tumor was resected. The flap will not function as a normal swallowing mechanism.

Danae

So sorry you had to find our little club, but EricS is "spot on" with his post. The shock of the tongue cancer coming back after you went thru so much pain the first TX is very depressing. Being unable to swallow or eat is not much of mood elevator either. Still, your brother can and will adjust. I'm 5'11" and when the hospital was done with me the second time with all the surgery and flap issues, I was only 119 pounds, and almost a year later I am only 134 pounds. Yet my son and I just spent 4 hours shoveling out our driveway from 24 inches of snow, helping a neighbor chain saw his tree which had toppled into our driveway and then hauling that to the snow bank curb, and digging out another 15 feet of street so hopefully the plow will swing bye. And did all this with my PEG tube tucked into my underwear.
It's only because your brother does not know just how mundane and common what he feels are unique tragedies to him really are for many of us here at OCF. And yes, there is most definitely hope of talking and drinking BUT your brother will not only have to see a speech therapist, but also practice daily at home the exercises. No reason on earth why he can't be back on the golf course. (although EricS is right, golf is not my cup of tea). Plus you did not say how old your brother was, but I am 62 and I bounced back. So it's okay to think and hope about his recovery also.
Keep the faith and please let your brother know that he is not only not alone, but taking a difficult path many of us have travelled. Life is still good , just different.
Charm

Sorry, I did leave out his age. He is 56 and has been fighting this for about six plus years. My guilt comes from not questioning him more about what he was going through. I wish I had been more active in his care. After reading information on this sight, I am learning what to ask him and what to suggest.
Your post does give me hope that he will be able to function. He is not at a comprehensive care hospital as I see mentioned here. He has had no speech therapy. Maybe when he goes home.
Thank you for the positive comments. Shoveling snow? I would love to see him have that much strength.

No he has not seen anyone about his depression. They did a test? about a month ago and said that out of a score of 15, he was a 9 on the depression scale. No one has been sent in to see him. When he finally gets out, I am going to talk to him about going to a different facility for a second opinion about his recovery. It is difficult not being there with him. All of our communication is by iphone or email.