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Joined: Oct 2012
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Assalamualaikum,hello, its 4:30 in the morning in India, and my father is in the bathroom, he has gone really weak. although we have been giving him 2-3 glass of protein milk every two hours. he is not able to sit straight on the seat, hence I had to put a long stool in front for him to bend over & support his arms. I also had to hold him to bathroom,with a stick in his other arm. A lot of things happened yesterday. We are supposed to change his tracheostomy daily at home by ourselves, so there we were @ 4 pm ready to put the alternate tracheostomy tube in my father's neck,when i found that the tube is not going inside, although it has gone inside w/o much effort in the past. so i try to put the previous one which caused a bit of scratch on his neck. We immediately took him to the hospital & they said the hole somehow has shrunk a bit & hence they put a 6mm ID tube instead of 7.5mm ID tube that we used. this time they also put a hole in the tube so that DAD can talk. although he has not tried to talk yet. but hope he speaks soon.allah hafeez!!!

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Hi Hanima,

My dad had his jaw bone removed and a skin graft in January 2010 and he was in a critical state for almost a month before he started to get better. It was very difficult to watch, so I understand how you feel. Its very traumatic, but keep the faith! My father had a trach tube, a stomach feeding tube, and blood drainage tubes coming out of the sides of his neck. His face was unrecognizable. But after 3 weeks, he started to heal. They were going to put him in a nursing home during his recovery, but said that if I was willing to learn how to care for him then I could. So he came to my home for 2 mos while I cleaned his trach tube, his skin graft, gave him insulin shots, and changed his feeding bag. It was a lot of work, but I knew I was doing the right thing. He got to see his family including grandkids every day in a comfortable environment. All of the care he needed was very unsettling for me, but looking back, I feel much stronger for it. I saw him in such a down state and then I saw him recover. It takes patience, but just know that you are not alone and we are all thinking about you and your father. With your love and support, your father is going to get through this.


Ang - Father first Dx Jan 05 SCC floor of mouth, stage 1 surg/rad treatment; recur May08 near jaw bone surg/rad again; recur Oct10 in jaw bone, partial bone removal no rad; recur Oct 2012, surg. to remove but some left in neck and waiting for treatment recommendation - he is a warrior!!!
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Thank you! S.P Ang,

Glad to know about your father's will to live!!!! My DAD is pretty scared of the surgery, he is afraid he will not be able to talk ever. past few days, he is been having mood swings. I m curious but i have faith too. he has become stubborn. he has refused to take any fruit juices because it gives him cold and it causes choke up in the trach tube. if we force him even a lil bit to atleast have milk every now n then he gets hyper and his head starts to ache. so i have been finding ways to convince him to have his diet. he is not able to pee since my last post. I wont say that i m exhausted or tired of serving my dad, i m tired to see him through all this. I seriously want him to recover as quickly as possible. and S.P Ang I do have a question, is ur father able to talk properly? does his face look normal? Its embarrassing to say but my father is a lil bit looks conscious too.... thank you guys for helping me out of this... its hard but i m in for a long run....

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You can definitely tell that my dad had something done on the side of his face. There is a bit of scarring because of his skin graft and previous surgeries. But you know, in pictures you can't really tell - kind of strange. His talking was affected; he is harder to understand. And he has not really eaten solids since the surgery. His attitude is amazing though and I think that helps tremendously. He blends EVERYTHING and drinks it - he seriously is back to his original, healthy weight and he works out daily. He will blend fish with potatoes and broccoli and then add some ice cream for fat. I don't know how he does it. So yes, you can tell by looking at his face and by talking to him, and that was hard for all of us at first. But he is so positive and determined that I rarely even think about those other things anymore. It doesn't happen overnight, so patience is key. Eventually you adjust to a new normal.


Ang - Father first Dx Jan 05 SCC floor of mouth, stage 1 surg/rad treatment; recur May08 near jaw bone surg/rad again; recur Oct10 in jaw bone, partial bone removal no rad; recur Oct 2012, surg. to remove but some left in neck and waiting for treatment recommendation - he is a warrior!!!
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There are far worse things in life than being disfigured. Most patients think they look far worse than they do in reality after any type of facial surgery for OC. Your father will adapt to whatever happens, there isnt much of a choice. Some patients will need professional people to speak with to get past any dramatic change in their appearance. The saying "looks arent everything" really is very true. So much better to be alive and not look the best than to not get thru this due to vanity.

Speaking as someone who is now disfigured, its not always easy to live disfigured but I have adjusted. After walking around for over a year with people staring at me every place I went I became almost immune to the stares and whispers behind my back. I am still the same person inside even if I dont look so great on the outside. I know who I am and thats all that matters. I have dealt with this better than most. I hope your father wont go thru what I have but if he does, then he may want to talk with me or another survivor who has walked this path.

Best wishes!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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One more thing...as I mentioned, my dad had a stomach tube to eat for about 4-5 months. Perhaps you can inquire about this for your father. He does need nutrition so if he is having a difficult time, I would talk to his doctor. Keep the faith Hanima! We are all in this together. Share my dad's story with your father and let him know that he can get through this. I know its difficult and discouraging, but take it one hour at a time, one day at a time. My dad took a lot of walks during his recovery...even with his trach tube and stomach tube. The key is not to let the condition define your existence. Building strength is so important and it helps to fight depression, so make sure he moves around a little bit everyday (of course, check with his doctor about this first...but if they say its OK, then its important to help him move around).


Ang - Father first Dx Jan 05 SCC floor of mouth, stage 1 surg/rad treatment; recur May08 near jaw bone surg/rad again; recur Oct10 in jaw bone, partial bone removal no rad; recur Oct 2012, surg. to remove but some left in neck and waiting for treatment recommendation - he is a warrior!!!
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Hello Hamina,

I found this beautiful poem and I thought of you. Hope the best for father and for you for being a very loving child.

A Father's Love
You were the man who loved me first
The one who sat me on your knee.
You kissed my cuts and gave me hugs
And built that house up in the tree.
Even when you scolded me
You let me know your love
You told me all I need to know
About the stars above.
Thank you dad for all you did
And for loving me.
You showed me just how special
A fathers love can be.


Joyce March 1940 to January 2014
A wife, a mother, grandmother and great grandmother.
She fought oral cancer from late 2009 to Early 2014.
2 Timothy 4:7 I have fought the good fight, I have finished the race, I have kept the faith.
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thank you so much Ina.... I m overwhelmd... i think of all u guys wen m wid dad. i've been nothing but stronger since i have joined....all thanx to u guys.... now my sister wants to join too... Its 9 pm in India... dad's sleeping... today he cried 2 times in front of me saying he is not strong enuf to go through all this.. i tried to comfort him but he shunned me. also a family friend gave us a cancer specialist's no. in another city. gotta get an apppointment with him. he works at sterlin hospital. they have a branch here too. but this dr. is well known for surgeries.. So i am praying he says that the chances are good. gonna go to the oncologist who gave radiations to my dad. gonna ask him to refer an MRI scan. wanna be sure how much therapy worked.
CHRISTINE... thank you... i totally agree with u. looks are not imp. my dads lyf is. i hope he gets it.....
ANG.... i told my dad about ur dad. i think he did get a bit stronger but still he wanted me to ask u if u had to do suction of ur dad's trach tube??? did he suffer pain???

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I had to clean my dad's trach tube daily. It wasn't by suction. My dad had one that had an insert which could be removed and cleaned and then put back in. It didn't hurt him to remove it. He would gag a little bit if it touched the sides of his throat, so I would say it was a little annoying for him - but no pain. Then I would clean the insert in the kitchen and reinsert it. It sounds maybe a little different from the kind your dad has. Also, my dad couldn't talk for the first month after surgery, but he talks all the time now! He used a white board to write to us during that time. My dad was definitely on a lot of pain medication though...morphine...strong stuff. In fact, he was on a lot of different meds at the time. One would offset the other. I had to mash it up and give it to him through his feeding tube. Tell your dad that my dad says to hang in there and that it won't always be this bad. He says to take one day at a time...just remember to breathe. There is enough love and support to get him through this. The body is more resilient than I think many people appreciate. The will to live is incredible - no one and nothing can take that from you unless you let it happen. I see that in my dad and in so many of the posters on this site. Incredible people...


Ang - Father first Dx Jan 05 SCC floor of mouth, stage 1 surg/rad treatment; recur May08 near jaw bone surg/rad again; recur Oct10 in jaw bone, partial bone removal no rad; recur Oct 2012, surg. to remove but some left in neck and waiting for treatment recommendation - he is a warrior!!!
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Ang... the trach tube my dad has is also like that i have an alternate tube to replace wen i take the insert to clean. but the tube tends to choke up every hour... and it hurts him wen i change it n now days it hurts during suction too. tell ur dad i said thanks. ma dad's still sleeping i'll read him ur dad's msg wen he wakes up.

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