Irini,
My mother is 89 and was diagnosed just less than a year ago with MDS, low platelets, WBC and RBC. At first I was horrified with the prognosis (and what I read about it), but over the past year, I have come to peace with it.
My mother has her good weeks/days and bad weeks/days. When she gets sick (cold, flu, diarrhea, etc.), she has to be seen immediately because it has always progressed to something worse. She's been hospitalized 4 times in the past year for various illnesses, all tied back to the MDS. I see her health failing as well as her spirits. However, her hematologist encourages her to continue doing the things she likes to do -- garden, plant flowers, sit outside, go out with her girlfriends -- because really, what is life if you can't enjoy it?! At first I was overly cautious about her going places, etc., but now I realize that she has to live what life she has left in her own way.
So I guess what I'm trying to say is -- take the "2 years" with a grain of salt. In some ways, people with MDS have that window of opportunity to "live life to the fullest" because they know their time may be limited! I will tell you that I didn't feel this way a year ago -- and there are still times when I am devastated to think that my mother won't be around forever.
A couple of things that have helped us:
1. Anytime he's hospitalized, always ask to have him on the oncology floor if possible. I have found through trial and experience that the staff on the other floors (medical, surgical, gerontology, etc.) don't always have the knowledge of MDS (honestly, I have had to explain it to some of the nurses when my mom has been in the hospital before!). You will find that the oncology nursing staff have knowledge of MDS and therefore I really think his care will be better.
2. Treat any small ailment with urgency. If he has a cold, flu, diarrhea, stomach pains, headache, fever, bleeding, etc. -- even if it seems minor -- you have to get him to the hematologist as soon as possible. At least call them and ask advice. I know my mother's hematologist probably gets tired of me calling all the time, but three of her four hospitalizations this past year have occurred because I kept pestering them to see her! Bleeding and fevers are especially serious.
3. Take care of yourself. As primary caretaker (I'm assuming you are), it's important you stay healthy and SANE. In the first 8-10 months of my mother's illness, I was a frazzled mess. But I have since realized that I need to take some time for ME, otherwise I'm of no use to her.
Take care and keep in touch.
