Dec 15, 2011 - 9:34 pm
It's interesting to read the posts on here. I'm not surprised that 90% of them are from caregivers. I'm one of the patients and I can see my mother's frustration in a lot of your stories. I can also see myself in how you describe your loved ones. I had my resection in 2008, they only managed to remove 80 percent of it. I did chemo (temodar) a few times, and the last time I developed an allergy to it. Now the only medical option for me is radiation. I learned a few months ago that the tumor has started to grow again - this means I am now a Stage III.
I can see the pain, frustration and feelings of despair in my mother's face. As the patient, I hate that she has to go through this - I feel guilty and mad at the world for making her the only one who can help me. She should be enjoying her retirement and not taking care of me, a 41 year old.
Two years ago I got a dog, Gracie. She has been more important to me at times than myself. My quality of life has gone down to a level that I have accepted the idea of leaving this Earth for a better place. I hang on at times because I know my dog and my mother would be heartbroken if something happened to me. Life consists basically of medical appointments, taking countless pills, and trying to get through a day with a positive attitude. It is so hard to not be envious of healthy people... the battle goes on beyond the actual disease. Being single, I can't imagine anyone wanting me at this point.
I feel the extremes, incredibly blessed at times, and incredibly unlucky at other times. I have friends I can open up with, and the sort of things I talk about are the exact things my mother, as my caregiver, doesn't want to hear. I want to give up, I'm ready. The pain has become too much and I can't deal knowing that this thing is taking me slowly. I'm existing, not living. I can't work, I sleep twice a day, I can't drive anymore, my vision is going blurry, and I see my friends and other people my age having great lives and making plans for the future.
Yet what helps me through this? My dog - the only love in my life who has no clue I am sick and slowly dying. She is 3 now, and my secret wish is to live as long as she does. I am just praying that the end won't be painful for either of us when that day comes.
Quality of life is the most important thing in life... A caged bird isn't happy if it cannot fly, that is how I feel. Only my dog can help me forget, until when I am out on a walk and a neighbor asks "Chris, how are you feeling?". I know the question comes from a good place, but it only just reminds me again and my walk with Gracie is ruined...