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.

Danae

It's also normal to be somewhat depressed. IMO the so called depression tests are a joke for oral cancer patients since the questions presuppose that life is otherwise normal. I routinely scored 15 out of 15 or 10 out of 10 or 20 out of 20 depending on the test since I answered truthfully about being tired all the time, worried, scared, even little things a hassle, difficulty in eating, sleeping etc. But those things are normal for patients in TX. Still depression can also be very real for some patients and I know many posters here found some comfort and aid in anti-depressants. For me, logging onto OCF is my anti-depressant of choice
Charm

There are 2 basic types of depression: "Situational" and "chronic". Chronic is long term, sometimes even forever, more difficult to manage and the medications have to be carefully managed and tweaked by a psychiatrist.

Some inexperienced doctors will prescribe chronic depression meds (like Prozac) when anti-anxiety meds, (like Zanax) would do the trick.

I never had a depression rating test, but as Charm said, it is a normal response to having cancer.

Get a referal to a psychiatrist - managing brain chemistry is what they do. Oftentimes cognitive therapy by a psychologist is used in conjunction with the psychiatry.

I sure can't add to what these people have told you, But yes, let him drink allof the water he can hold. It prevents dehydration which can be nasty druring any recovery, There a a lot of us that had to be admitted to the Hospital and get IVS to get hydtrated again from lack of water. I am with your brother about the golf. I have been putting in my hallway because I haven't been able to go golfinf for over 3 years, but am going thnis year if it takes me a day and a half to go 18 holes or even 9.

I want to add my voice to Gary's in terms of getting a reference to a good psychiatrist and therapist if you believe there is difficulty with managing the depression. Anti-depressants/anti-anxiety meds (like many meds) may need tweaking to get to the right place. It's a big industry with many meds coming out regularly so it helps to go to someone who is up on the psychtropic medications.
There are also many types of therapy out there such as cognitive behavioral, stress reduction techniques,etc that work well alone or in conjunction with medication.
Also, don't underestimate how helpful it is to someone who may be depressed to know he has folks(like you ) that care!!!

Love the advice and guidance. I am taking everything you say and relaying it to him. Still trying to get him to log on.
He goes back to the Dr. tomorrow to see if the chest and back are healing. Praying that the fake skin did the trick and his wounds are healing. That would be a big plus for him. Hoping they will take the trach out. Wouldn't that be fabulous!
Again, what a group of fabulous, caring people.
Thank You.

heres to hoping for the best!

Haven't been on in a few days. Brother had fake skin put over large wound on chest. Body rejected the fake skin, tremendous pain removing bandage with fake skin. Trach is out this week. They are sending him home from rehab next week.
Still has open wound on back and large open wound on his chest.
They are going to leave the chest and back wounds bandaged and they will take weeks/months to heal. Will always have feeding tube but very happy trach is out. Working with speech therapist and able to say a couple of words.
This forum has helped me so much. I am able to talk to him and make good suggestions from reading the entries.
I am still trying to get him to sign on. Maybe when he gets home and feels better about his future he will reach out to others.
THANK YOU!

danae,
glad the trach is out. he must be happy about that.
sorry he is having other complications.
i was never able to get andy on here, but it was such a great help for me. i relayed alot to him thru this site. i also used this site to "let it all out" which i didnt want andy to see. so him not getting on was just as well!
so if he doesnt get on...u can give him the good advise yourself.
praying for his recovery to be smooth!

Reading Charm's post about shoveling snoww, cutting up tree and all made me exhausted. I went out and picked up a bunch of storm debris yesterday (with the "help" of Rocky, little brat of a cocker spaniel) and was wiped. Anyway, welcome to the forum, Danae, And keep up your strength and courage to pass along to him.

I agree with many on the depression, I was told from the beginning it was very common that right after the treatments were done that people go in a funk/depression of sorts. For most of us the goal is to get through the battle ,,,,then you wait and it can get depressing when you are hurting, can't eat, nothing is normal, etc. Typically with help, this normally passes. But no wonder we are depressed duh. Kinda of like when I was at the Drs waiting to hear about a MRI or PET test result they would take my blood pressure and it would be off the charts...no s%#!, Take it after the Docs tell me no cancer !!!

Bill,

My GP equated it to Post traumatic stress. Said its the same as a soldier that has just been in a life threatning battle. When they get back to safty, sometimes they have a hard time adjusting.

Kelly

It's not unusual to see symptoms of depression post illness in many types of serious illnesses. For example, it's common in people who have had bypass surgery. Some studies think it may be physiological in origin, others think it is psychological. To me, it makes sense that it is either or both.

Being run down physically certainly makes it hard to feel good, and trying to adjust to your body not being able to do what you think it should is also hard. For people concentrating on just fighting to keep their health, post treatment time might be the time they can really stop to think about what it all means.

Whatever, the cause no one should have to live with it. For some it just passes. But other folks may need therapy and/or medication. And caregivers need to watch for the symptoms in themselves too. It's so easy to be focusing on your loved one that all of a sudden the symptoms creep up on you!!!

I think that your mental attitude going into surgery has a lot to do with a persons mental state after. I have had a Nissen Fundiplication, that is when they wrap 1/3rd of your stomache around your Esophagus because of pre cancer, 2 Abdominal Aortic aneurysm surgeries, the last 1 a year ago, and many shoulder and elbow sureries and that doesn't include kidney stones 12 times. I was the same happy guy coming out of them as when I went in. I might be the way I am because I have fought to live since I was born and not supposed to live, then when I got older they didn't think I would be able to ever walk. I wish you well and hope you don't have any mental problems. Get those positive thoughts working for you.

Forgot,, I will be 74 the 21st which is this Sunday.

thats my dads b-day too! happy birthday jim!!

Jim,

Happy Birthday to you!

As with you no one thought Carol would live. They had tried everything to get her to eat, gain weight after she was born. Her mom was told to try goat's milk. Carol's here today at 56, going strong as she can. Of course, she'll never catch up to you.

Brother came home today He has been in the hospital since before Thanksgiving.
Speech therapist, physical therapist and nurse are coming daily to help him. Wounds on chest, back, upper neck and trach still need to heal and we are told that this will take some time. Sick to his stomach (nerves?) Also needed a mouthwash. I have read some postings about a mouthwash. I will need to go back and re-read those postings.
Need to ask him more questions so I can guide him with your help. Thank You.