Hello, All. My name is Amy. Im new to the forum, but extremely grateful to have stumbled across it. I live North of Houston where my uncle (67 yr old smoker) receiving treatment at MDA. Forgive the lack of terminology, but sadly up until last night he has chosen to suffer alone and keep as private as possible, therefore the details are these: recently diagnosed with oral, lung and kidney cancer. Underwent 18 hrs of oral surgery 1/31/12. Numerous teeth, part of tounge and part of esophagus removed. Still has feeding tube Just finished 3/16+weeks of radiation. In addition, he started Chemo yesterday- 3/19/12.
He is asking for help! I know MDA has resources but for some reason think I'm going to find who he needs here. Can anyone direct me to someone who has been through the same or similiar situtation? Any help is kindly appreciated.

Just to confirm- he is asking to speak with someone through what he is going through. Recent swelling has scared him. Radiation/Mask terrifies him. He needs to just talk. Thanks again. (forgive the scatterbrain!)

Hi,
I cannot say I have gone through exactly what your uncle is going through but I was a patient at MDA for my oral cancer, and my unrelated cancer, a sarcoma, GIST tumor. You are correct in saying they have tons of services. Have you visited with the social worker assigned to him? That would be a start. She (I imagine it would be the same one I had, although he has other cancers)would be able to point you to some face-to-face help if nothing else. They have lots of chaplains of various faiths if he would like to go that direction.

Much of the experience is frightening, and while the fright lessens as time goes by, we survivors all have our moments as well.

He would have a dietician assigned to his case and if you take the time to talk with them they can be of help as well. In fact I was supposed to have a visit scheduled weekly--this did not always happen, but the resource was there. Their integrative medicine department is becoming more and more active, and they have many classes he could take if he wanted (and you could go with him), from meditation to yoga, all designed at helping him cope. They are great, but lots of patients do not help themselves out on this. As a caretaker (you are taking care of him by helping out) you might enjoy these as well.

I imagine someone else will post here soon that might be able to help out more specifically. It does not help to keep to oneself, but it is difficult to make someone who does not want to do so, reach out.

Radiation scared me too. I did not "enjoy" the chemo routine. I hated what surgery did to me, though I feel like a baby because I did not have it as bad as many! I feel for him and for everybody else having to go through it all. He's lucky he has you in his corner, though! Everyone must have a support system to get through.

Make sure he is getting the proper nutrition. I do not recall on your previous post what you said about how he was getting that--PEG? He still needs to practice swallowing, drink what nutrition he can, eat what he can. There are a lot of experienced folks here who can help you out on a PEG.

Hope this is a little bit of help, and there will be more to come.

Best,
Anne

Hi Amy - I know you will get several answers in here for your uncle. These OCF forum members are the most helpful people you will encounter anywhere and will be able to give you and your uncle comfort, advice, and plenty of expertise as most have been thru what your uncle is experiencing now. Keep checking back and answers will appear soon. Thank you for being such a caring niece. Tell him he is NOT alone!

Hi Amy!

Welcome to OCF, glad you found us my dear, sorry you had to!

Wow! Your uncle is in the fight! Great news is he's in arguably the best medical care in the country in MDA! Now for support, I don't think you find anywhere better than these forums for knowledgeable, caring people who can understand the struggle.

Just know that you as a caregiver and your Uncle as a patient have folks in your corner, that you are not alone and we can and want to help y'all through this. If we're big on anything here at OCF aside from knowledge, it's heart, we care.

Let us know how we can be of service, advice, an ear or a shoulder.

Be well, again, welcome!

Eric

Hi Amy! Welcome to OCF! You and your uncle are no longer alone in this battle. You have found the very best place to get tons of info and support.

I have spoken with many oral cancer patients and their caregivers over the years. Look next to the My Stuff tab, you should see a flashing envelope. I sent you my number if you or your uncle need to speak with someone please give me a call.

PS... Im a former smoker too. Darn cancer was what got me to quit.

Hi there - welcome! So glad your uncle isn't doing this by himself anymore he does have a fight on his hands but he is at a great cancer center. It sounds to me like he's 3 weeks into radiation ? This is when it gets hard. And will likely stay that way for another 5 or 6. Are they treating all his cancers with chemo and or rads? Or operating? To remove the lung and kidney tumors? Are they related? To his oral cancer? Lots of questions I know. Tell him the mask is mnot pleasant by any standard. I used to listen to the music, and close my eyes and go somewhere else. I also visualized myself healing. If he really hates it they can give him meds for it. If he's being treated as an in patient they can also control his pain meds better. Tell him I'm saying a prayer for him. And wish him much comfort. There are loads of people here who've been through the radiation and surgery there'll be plenty of advice available.

THANK YOU ALL for taking the time to reply. I can't wait to get home to have access to a screen bigger than my phone to try and learn this site. Sincerely grateful. Take care. I'll be back

Support you have here. Answers too. I know the mask scared the heck out of me, had to take valium to get on that table, but got through it 35 times. Best wishes to your uncle for strength and patience to get through this.

Amy, does it help if he listens to music or even an audio book during treatments? That really took my mind off it and was I'm sure the only way I got through it. If they don't have music he likes in the treatment room you could always bring in a portable player of some type.

Keep us posted, ok?

At my cancer center they played CDs during radiation, and after I got sick of their selection, I askec if I could bring my own, and that was fine. I got so I counted the number of songs they played, and when I got to eight, I knew that it was almost finished.

Hello there. I went through this starting last April and I wrote a blog about my experience. It wasn't pretty but it's an honest blog. I'm doing well now a year later so no matter how miserable my experience I DID recover.