Sep 03, 2012 - 2:23 pm
I'm sure that most of you who have been around for awhile are used to the ebb and flow as patients and caregivers come and go, but for those of us who are still newbies, I joined a scant 3 months ago, this is a difficult time. Reading about Judy and Don's situation has brought me to tears, learning of other more recent deaths is heartbreaking. Yet I still log in each and every day, multiple times a day, as I feel this is a place that will support me. I've had friends say, if it upsets you, stay off. But I can't. I'm one of those people who needs to be in control. Not to say that we ever are in control really, in any part of our lives, especially with cancer, and EC no less! But what I mean is that I feel that knowledge is power, and as heartbreaking as it is to hear about Don's battle with the fluid, and all the other symptoms that might occur, I feel at least as if I am armed to go into this battle. I'll know what to look for down the road.
What is so scary to me is that you can do everything right: get through chemo and radiation, have the surgery, get clean scans, and then BANG its back, with no rhyme or reason. That is truly truly terrifying.
I am on this board pretty much solo. Dave knows of course that I post, but he doesn;t read any of it. And I don't blame him. He knows the odds, he knows what he's up against, and we don't really talk about all the details. They would overwhelm me if I were the patient.
I try and focus and encourage him with the good things. As an example he was finally able to eat some "real food" last night! Not a lot, but its a start. And he told me he now feels about a 4 or 5 on a 1-10 scale where 2 weeks ago he was most definitely a '1" and that is being generous!
We also were able to reconnect last night as a couple, something that I have dearly missed, but he has just felt so bad that it was not even an option. I alos told him that I miss just our closeness, just to be held. When you feel so bad I know its hard, but the caregiver needs just the comfort of touch.
Surgery is October 8th, and we both are going into it with the desire to kick some &ss! He's been a trouper so far, and I think he'll do well. But again what scares me to death is that it's all just one big un-known. Hopefully he'll be like William and survive many years. But there have been so many good people here that didn't make it. And that saddens me to no end.
Thank you for just letting me get these thoughts off my chest.
Each and every person on this board is a hero to me.