Almost a year

Well, here we are. It’s a little more than a year since my dad went on hospice, a little less than a year since he died.

My husband and I had planned to try for a second child. After my father’s death my husband asked if we wanted to put those plans on hold.

I said no. My dad was ill for six months and it was six months of daily hell. The last thing I wanted was to put my life on hold. I needed to keep on living. So now I have a son. Pregnancy and childbirth distracted me for a while, but things have calmed down and I find grief is still there.

My dad died. A year on, my mom says his death was peaceful, and the last month of it was–and if that is the part that she’d like to emphasize in her memories, then I won’t burst her bubble. But the time between his diagnosis and death were horrific in ways I still don’t want to talk about a year later. My dad wasn’t one of the lucky ones who stayed lucid and alert and conscious. That was the worst of it all, not the loss of his body but the loss of his speech, mind, and personality. It was like he was hit by fast-moving Alzheimer’s, and before we even knew he had a tumor there was nothing of him left. Yesterday I looked back at some photos (I didn’t want to, but I needed to back up my dad’s computer, and I needed to do that when I was on leave). I saw my dad healthy and vibrant just four months before his diagnosis–and then I saw photos of him only a few months later, a dead man (sort of) walking–and it was beyond unbelievable what this disease did to him, and how fast it all happened.

People repeatedly complain that GBM gets no research funding, GBM gets no press, doctors don’t know much about GBM, etc. Try PCNSL. The funny thing, and something I’m bitter about, is that it’s supposed to be the most treatable brain tumor. Every other PCNSL story online seems to have a happy ending; the patient is either cured or they are walking, talking, or chattering away on forums. I have no idea what happened to us.

Sadly, as time passes, I also begin to get used to his not being here. Not that it doesn’t ache but I don’t think that my e-mail inbox looks empty any more, and I’ve gotten used to his not “liking” everything I post on Facebook, and I know that now I have to take family photos or nobody else will. And I guess if I am lucky and live until my 70s or 80s that I will be even more used to his absence, and I won’t care so much if there isn’t some kind of afterlife where I see him again. I don’t understand though why life has to be so nasty and cruel. He was a good man. He did not deserve to go as he did, or when he did.

Oh God, I miss him.


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