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AmysJourney · May 07, 2014, 09:18 AM

"Day #14

Yeah, I made it for two weeks now. That for me is a really important mile stone, even if it seems so little in the whole vastness of time. Every day really is a blessing to me so this means a lot to me to have made it here.

I was thinking today I should talk a little more about my real struggles at the moment. It's fine to write humorous things, good things, encouraging things - but there is of course a real struggle going on here too and I want to let you all into this part of me, this part of my story, too. And this is everything else but easy.

As you saw a few times lately, I had difficult days. Right now there are good days and bad days. The good days are when I feel halfway comfortable in my skin. The bad days are really bad. I feel excessively tired, as if my body is telling me to conserve energy because I don't have too much of it left. I sleep a lot but wake up gasping for air because I feel panicked that I will suffocate. Sometimes I sleep with my emergency inhaler in my hand because it gives me some security to know where it is when I need it.
My pain is slowly getting managed better, the hospice nurses are good at monitoring it and adjusting the dosage. But when it gets bad, it really gets bad. And then, all I can think of is that I want it to end right there and then. And I regret that thought immediately when I feel in less pain.

People around me are trying to be really helpful - but most of the times (yes, most of the times) I feel they are really getting it wrong. It seems they know more about this situation than I do and they have a lot of advice, thoughts, worries. Most of these thoughts however are rather hurtful. They seem to worry more about what I will be wearing at the funeral than what they can do for me right now.
There even was a situation last week that really made me think people are crazy. Believe it or not, there was almost a fight about what happens to my ashes!
I mean, seriously? That's what people are concerned about?? It made me so mad, it stressed me out and it made it very difficult to have compassion. I always try to see the good in people and these people are not bad people at all. They really care, they really love me but WTF??
One even went so far as to call one of my doctors and asked for information on the prognosis in order to "be able to plan better". Gosh, that went too far. Thankfully the doctor reacted ethically and told that person to fu%# off. (I know you're reading this now, dear Doctor, so THANK YOU for that!)

I wish there would be more talk about the right now. More talk about life than death. More peace, more freedom. I wish there was more normality (is that the right word), even some dull conversations about something stupid. I would even tolerate gossip right now, haha.. Everything but a reminder of my fate.

Well, we'll see what will happen. Until then, I am filling my days with things I like and which make me happy or what makes me smile.

Have a nice day everyone..
A"