Q. What is the hardest thing about being in the hospital this long?
A. I would have to say the muscle atrophy – not that I had all that much to begin with. The doctors and nurses advised me not to carry anything, not to overexert myself – not realizing exactly how inactive I’d been before. My mother follows their orders word for word and carts everything herself from home to hospital. She won’t let me lift a finger and neither will most of my friends. It’s a little emasculating – and hasn’t been at all healthy. Lesson learned: get some exercise, if you ever find yourself in a similar situation :-)
Q. Do you find yourself being a little short-tempered with your friends and mother?
A. Indeed. Especially with my mother, because I know that whatever I do, she won’t abandon me and is in it for the long haul.
After a month of practically no sleep, waking every hour in a pool of sweat from terrible nightmares (or just ‘cause), the potentially terminal illness, and very strong medication is a pretty bad combination.
I also tend to put the ‘Mike’ in ‘micromanage’ - had I done that before all this started, everything would have been a lot easier.
Q. How do you deal with the stress?
A. This is the toughest job with the longest hours that I’ve ever had – and the rub is I’m paying through the nose to do it. But I don’t really have a choice, so I just take it one day at a time - to cite the cliché title of the 1970s sitcom.
Q. Has communication with your doctors been up front and open? Has language ever been an issue?
A. As this is my absolute first hospital(s) experience, I don’t really have anything to compare it to. But Czechs tend to be a lot less blindly optimistic than Americans, so when they are hopeful, you can really believe it.
Most of my doctors speak English very, very well. The ones who don’t, speak Czech clearly and slowly and always ask me if I understood what they said. If I’m not 100% certain of what they said, I just ask for clarification until I am. My Czech is actually pretty good after twelve years here and I love all of the compliments I’m getting.
Q. Any complaints about the care you’re getting?
A. No, but again, nothing to compare it to. My only complaint is that they don’t really give you an exact time for anything. “Chvilku” (basically meaning “just a couple of minutes”) can be up to a four hour wait. When you have to go to the bathroom, that’s quite a long time.
Strangely, the transfer on Wednesday went like clockwork - I’m just not used to that. The ambulance was fifteen minutes early, so I had to woof down my breakfast pelmeni, finish packing my bags in a rush, quick tear jerk with the nurses (who cheered me) and we were at Homolka by 7:45. Unfortunately, they didn’t have my room ready, so I had to wait until the more typical ambulance drivers showed up at 11:45 to take the other guy away.
That’s when they rushed me through a ton of forms after I had had literally nothing to do for four hours except beg to go to the bathroom and watch the SUPER TUESDAY results in four languages. Thankfully, I had already been to the bathroom (the guy who was in my room and waiting for hours for his ambulance let me) just prior to the form filling.
When I finally checked in well after noon, the woman who had denied me a trip to the bathroom for hours handed me a cup and said she wanted a urine sample. I made her wait.
Q. Is there any bright side to this experience?
A. Absolutely! As someone who places a very high value on self-awareness, a completely life-changing event like brain cancer pushes you to your very limits and really teaches you who you are as a person.