On 5/8/2008 capp519 wrote:
I don't know if it's me or if others feel the same way. When family or friends call to see how my husband is, and I tell them how much pain he's in from the radiation/chemo, I always get a story about someone they know who had rads and came to work every day or someone who had chemo and the week after was skiing or hiking. Are other cancer treatments that different from head and neck as far as pain. I feel like they think I'm exaggerating. The only ones who understand are his cousin (who had the same cancer a year ago) and his brother (who has taken him for some of his treatments)
Thank goodness for this board or I would think what he is going through was abnormal.
God Bless, Carol
As a caregiver, I can only say 'ditto' to whateveryone else has posted. My husband, 4 weeks out of radiation, was force feeding himself a couple of fried eggs & light toast & a Boost & I called him in to finally read some of the posts on the 'boards. He declined a PEG tube, and lost too much weight, and the doctor the other day told him he absolutely has to eat no less than 2000 calories a day or his cells won't regenerate at the rate they need to. So now, he forces down cheese cake and milkshakes and eggs and macaroni & the ever ready Boost!
It's true - he just wanted to be left alone and get through it. Now because he is still tired, he says he just feels like a 'waste' - but he understands that he is recovering. Just impatient. People just don't understand, but we were fortunate to have a couple of long distance friends that just listened to me and understood that he could spend just a few seconds on the phone with them. We're relatively new to our area, so turning down social invitations wasn't a problem. My family is across the country, but we spoke every day, sometimes several times a day, and they really can't understand the pain, so I stopped trying to explain it or expect them to understand. Everyone tries to be helpful, but some days were just so bad that I would cry in the shower so he wouldn't feel guilty. He still keeps apologizing to me as if this is somehow his fault!
One day almost to the end of radiation he hadn't slept the night before because of the mucous and choking and spitting & I didn't sleep either and we both just ended up crying in the radiologists office. The first time he had cried the whole treatment. It's odd, we never cried because we thought he might die. It was his suffering through the treatment that will keep him alive that wore us out. It is just exhausting and no one really gets it. But THANK GOD FOR THIS AWFUL RADIATION. So we just kind of hibernated for the entire 3 months or so. So don't worry about people trying to understand, even though we wish they would. Just hang in there and cry when you want to because it feels good afterward. One day after finishing radiation my husband was so discouraged because he wanted so much to feel better that he just broke down during a follow up visit. But he admitted that he just felt better after the release (women have known that forever!!!). I asked him last night if he could start keeping the bedroom door open while he was in there watching TV and resting - I wanted him to be less like a shut in. After reading these posts, he asked if I understand better why he keeps the door closed. But he is better off than many, as everyone reacts differently, but I see that everyone has the same questions & it is so helpful to be here to share the experiences.
I'm glad I checked back in. For a few weeks I just couldn't. Everyone hear understands. Bob actually laughed when reading people's postings about this being Hell and being dragged across the finish line. He feels the exact same way. I wish he would post, but his typing leaves a lot to be desired. It would take him forever to hunt and peck