Thanks to all caregivers who have been posting on this site...I have been reading constantly. I have posted questions and comments on the other areas of the OCF but this is the first time I'm posting for ME.

Life is so very frustrating as my husband is in his 15th week post treatment and still has to use the PEG tube to eat. He was diagnosed with stage III tonsil SCC in August 2003 and treatment began in September 2003. 3 days after receiving his last of 35 radiation treatments and 6 chemo treatments he was admitted for 2nd & 3rd degree burns. 3 weeks after being released from the hospital he was re-admitted with a bronical infection. On Jan. 5, 2004 he had to have hernia surgery, something that developed as a result of all the spitting and coughing during treatment.

Our life is still turned upside down. We have been blessed with remission now but recovery is still so very very slow. I am finding it harder and harder to keep his spirits up. I had to return to work full time mid-November 2003. I am fortunate enough to only have to work 3 days/week but my days are 13 hours long. Each work day includes waking up at 4am, getting myself ready, feeding my husband via PEG tube, working all day, returning to feed him again (thank goodness he can now drink Carnation instant breakfast while I'm gone, cause before I would have to feed him again at 11 or 12 at night to make sure he got all his calories/nutrition) and help him with other personal care issues because his hernia makes it difficult to move around, only to wake up and do it again the next day. By my first day off I'm exhausted.

When he was going through treatments my 20 yr old daughter moved in to help out and my sister and mom helped all the time. Since it has been so long after treatment the help has dwindled. I understand because they all have jobs and lives too, but it is very difficult to continue at this pace for 6 months. I am going to my doctor tomorrow in hopes of getting some relief...I am having muscle spasms and jaw tightening, as well as gaining weight and I know these are a direct result of stress.

What have any of you done? Thanks for letting me vent. I know you all understand and have been through worse then me.

Lorie

Hi, Lorie!
My hat is off to you and to every other caregiver. You have the most difficult job by far. With regard to PEG feedings, I would suggest that your husband can do his own, which will free up some time for you. Speaking as a former patient, I did almost all my own feedings, because it made me feel like I was actually doing something besides sitting around being the patient. If you put the supplies close by so he doesn't have to go dancing around, he might feel he is accomplishing something just as I did. Waiting to get better after treatment is done is some hard time, but please know for sure and certain that things will get better.

Hello Lori,

My name is Dan Bogan and I live in Kaukauna, Wisconsin. I read your post and feel that being
a caregiver is just as diffucult as being the one with cancer. You are to be congradulated on all you have done for your husband. I was DX with stage 4 tonsil cancer and endured a 15 hour surgery and 33 treatments of IMRT radiation.

I was lucky to have married a Nurse 32 years ago and without her as my caregiver I would have been lost. After about a month post surgery I started doing things for myself. I have fed myself for 5 months through the PEG tube. It's not very hard to do. The biggest challeng for me was to eat orally. I had no appetite. I staeted to eat about 10 days ago weather I was hungry or not. Once I did this my appetite came back within 1 week.

Also have your husband set goals for himself. For awhile I was showering and shaving about twice a week. Not like me at all. Now it's a priority to eat breakfast, shower and shave. One feels much better after a good shower mentally. I was no longer wallowing in the "poor me attitude". I also can do all the laundry and clean the house. I love to cook and I realized I have to eat softer foods but still get the nutrition I need daily. I was down from normal weight of 150 lbs. to 121 lbs. after the surgery. Not a pretty sight. I gained back all my weight in 6 weeks using the Jevity through the tube.

My wife and caregiver got a prescription for anxiety to help her thru such a stressful time in our lives. It helped her allot. You may want to talk to your doctor about that.

I wish you all the besr and like all my friends here at OCF told me, Measure your progress in weeks and months not days.

P.S. To Gary & Mark, Did you hear the new term after the Super Bowl halftime show? Another new term that I'm sure I spelled wrong!!! Dan
"Wardrobe Malfunction"

Your Friend, Dan Bogan

Hi Dan,
Next time I forget and leave my zipper down, I'll just call it a "wardrobe malfunction"
What'll they think of next. What DID they expect from Janet Jackson? She was just being Janet - It was the boneheads who hired her. If they wanted family entertainment they should have hired Shania Twain or Dolly Parton or Wayne Newton or something. Such a big deal -if you blinked you missed it anyway - it's just a part of the "roast the Jacksons" deal. The NFL has overly sexy cheerleaders as it is - what IS the message they're trying to send out?!?!?

Lorie,
My wife already takes meds for Post Traumatic Stress Disorder so she didn't need anything new. I WAS a handful! I am probably NOT a very good patient. She was a saint. You need to have space and escape from it to preserve your sanity. And what Joanna said about transferring the reins of responsibility - Thats a great thing. We have a saying in AA that "...once you get out of the problem and into the solution - the problem goes away". It's great that you are back to work.

I am going to set you free here - it is NOT your job to keep HIS spirits up! It's your job to keep YOUR spirits up! Each one of us must take responsibility for our own feelings.

He should be talking to the doctor and the nutritionist about HIS depression and feeding issues, respectively.

You must keep in prespective that this is a difficult treatment and recovery is usually always complicated by secondary infections, swallowing problems, radiation burns, constipation and many other issues I am sure you are already aware of. It's all too easy to assume that just because you had the last rad treatment that there will be an overnight recovery and that just ain't gonna happen. This is when most people hit the bottom emotionally and physically. It also is the time when people outside feel you don't need help anymore -which is totally wrong. You need respite care and you need to communicate this with your family and support network (and what about his friends?). You may find some comfort in joining a caregivers support group also - ask your social worker at your hospital.

Hi Lorie,
You are about at the place we are now. My husband finished treatment on October 31st. He also suffered severe burns and dehydration. He still gets most of his nutrition through his PEG tube, but is beginning to eat some soft foods. He had all his teeth removed so his diet is limited for now. On February 13th he will have a right neck dissection to remove his lymph nodes. After that we will be done!!

Everyone tells us caregivers to "take of yourself", but when it comes down to it we must take the initiative. My husband was away in Portland during the week receiving treatment, so I continued working. When people asked how I was doing I told the truth. On days that were difficult, I said so. Not everyone wants to hear that, but I felt better acknowledging my own feelings. On days I was doing OK, I also said so. Hearing that out loud made me feel even better.

I also sent out weekly updates by email to our friends and family so that everyone could hear the news at the same time and I would not have to spend time trying to get in touch with everyone.

I kept up my volunteer work as best I could, called friends for lunch or dinner, learned to go to the movies by myself, and wrote in a journal. Not only do I keep track of doctors, appointments, and procedures, but feelings, frustrations, highs and lows. As I looked back through it yesterday, I realized how far we have come since the day he was diagnosed. We have a long way to go, but now I know we can make it.

As for my husband, I give a lot of credit to the members of the local chapter of the VVA (Viet Nam Veterans of America). He had to give up his presidency of the chapter while he was in treatment, but since the day he came home they have included him in every event. They even pushed him in a wheelchair in the Veteran's Day parade just 5 days after he finished treatment! They really are my heroes.

The last bit of advice I have is to keep in touch with this website. I find a great source of comfort and inspiration.
Take care, Cindy

Hi Lorie

I've been on both sides of this equation, both as caregiver to my first wife who had malignant melanoma, 10 years ago. and having my own couple of battles with oral cancer in the past 2 years.

Despite all the pain I had to deal with during my recent episodes, I think that it's easier being th paitent than the caregiver, at least emotionally if not physically.

Luckily during my wife's battle with cancer I had the support of a caregiver's support group, and the one thing we learned was that in orderr to be a good caregiver, we had to take care of ourselves, without guilt. That may mean every once in a while scheduling some "me time" May be something like a trip to the beauty parlor, workout at the gym, a few hours at the golf driving range (pretend the golf balls are cancer, or frustrations in life, and you are wacking them away)- Ok, maybe not the driving range in the middle of winter, but you get the idea, or some other activity you enjoy but don't get to do.

I too found that family support only lasts so long, then everyone gets tired of being good samritan and heads back to their normal sane lives, and leaves the primary caregiver to deal with the crazyness that life becomes.

Like Gary said, see if there's a caregiver's support group around, I belonged to a group called "Wellness Community" has chapters in several cities.

Dan, Gary, Mark, Super Bowl here was on on Monday morning, on China Central TV 5, with play by play in Mandarin. Forgot to tape it, and missed the whole thing. I could just imagine the state censors gagging on their tea and jumping for the cutaway button when the top came off.

Why doesn't anything like that happen at Man United games?

Thank you Thank you Thank you!!!

I would say you don't know how much all your words of wisdom and encouragement mean to me, but I think you all know first hand what they mean.

Life continues to get more and more difficult for Don. Today we found out that he is apirating the liquids he is drinking into his lung...fortunating no problems have developed from this as yet. Now he can't drink thin liquids. Our hopes for the feeding tube to be removed soon is now back on hold. He also has slight tightening of the esophagus so more testing and procedures lay ahead. Have to make an appointment to see the ENT to find out what is causing the liquids to go "down the wrong tube"...more tests and procedures.

I did go see MY doctor and she prescribed Lexapro. She also agreed all of you that Don needs to do more for himself. The GI doctor also agreed with all of you that Don can feed himself. We just haven't figured out how to actually do this without getting it all over the place and causing Don to want to just rip the thing out of his body. Any handy-hints on how to actually do this? The syringe is big and holding the tube and the syringe at the same time without making a huge mess seems almost impossible. We could use your help.

My doctor also said Don needs to take more responsibility for himself. He got a little defensive when I brought this up but today he did a lot more around the house and he actually drove to pick up his own prescription from the pharmacy, making it a lot less stressful on me during a very busy day of meetings and appointments. I have also mentioned to a co-worker about my Lexapro and turns out she is taking anti-depression meds too, and it was nice to hear her experiences with this and just to not feel "crazy".

Well...it is late and I have to wake up early to go to work. Thanks again.

Lorie

Hi Lorie,
I am no expert with the PEG feedings but I understand that you can put the food in a bag and drip it in, no hand required after setting it up. You'll need a little apparatus for that - talk to the nutritionist. I understand that it's easier on the stomach to feed at a slower rate than just injecting stuff into the PEG in a hurry. You PEG experts are free to join in here!

Lorie,
My husband had a small pump for his feeding tube. It fit in a small backpack so that he could be mobile while the feeding was going on. The nice thing about it is that you can set the drip on the pump to exactly what is most comfortable, digestion wise. Our insurance covered the rental on the apparatus. Might be something to look into.

Good luck. I know this is hard. It gets better.
Anita

Hi Lorie,
I used a simple syringe to feed myself, and from the third week of radiation it's the only nutrition other then water that my body had. I would feed myself in the morning while watching TV or while I was on the computer. I made sure I fed myself 5 cans a day, the went to 6 cans after a few weeks. My stomach had some issues at first accepting the different diet and my bowels went south for a bit, but eventually it became quite routine with the feeding. My 4 year old grandaughter loved to help, could open the tube, hook up the syringe and help me pour it in. I always used alot of water along with the canned food and put some coke in there about every 3rd day to keep it from getting clogged.
Sounds to me like your husband needs you to help him be more independent. I know how he feels, I didn't want to do anything without my husband when I was at my worst but sure felt better when I accomplished something on my own. I couldn't walk well for a few months due to losing the bone in my leg and when I went UP the stairs normally rather then like a one year old I was so excited, lol. You pushing at him to do things for himself will give him opportunities to experience these types of feelings. It will be good for him. Take care,
Minnie