Skip to main content

A deal with the devil.

Much as I doubt that anyone is still following this blog, I feel that it has become: a) a confessional for me, b) a record of living with MF, again, for me, and c) something that someone may stumble upon, perhaps long after I'm no longer here, while looking for information and resources for living with MF.

To that latter point, I know I've searched for blogs, vlogs, and other peer resources that just don't seem to be there in any great number. The few that I have found just don't speak to me; they're perky, avoiding any meaningful exploration of the negative side of MF. But it's not the up side I need to explore, it's the dark side of it. That's where I need to commiserate, the territory that deals with the back and forth between wanting to live and wanting to give over to what seems to be the inevitable, the exhaustion of dealing with blood cancer over 14 or so years, of dealing with what I've come to think of as "the medical life". It's like there's a general refusal to dig into the frightening side of MF that leaves me unfulfilled. But I know there are others out there who need this discussion too. 

Throughout the three years of living with this particular blood cancer, my mind has been all over the place, settling on something one minute and then casting it aside and going in another direction minutes later. I guess that's what happens when you live with a disease that's designed to take your life, and if you're the sort of person who spends far too much time processing it, and perhaps more pointedly, overthinking it. Having OCD, with its circular thinking that won't allow me to just put certain thoughts on the back burner, doesn't help here. 

Two months into 2024, my disease and I have come to a sort of understanding; We have made an agreement to live side-by-side until this situation becomes intolerable for one of us. 


Comments

Post a Comment

Popular posts from this blog

Assessment.

My assessment in Halifax for a stem cell transplant (SCT) took place this week. I meet with Dr. Christina Fraga and her team for an in depth discussion of the process, and was given the choice whether to go ahead or decline. Briefly, here's the information I was given: I am not quite "sick enough" to receive an SCT at this point. This is a balancing act because it was suggested that I should be blood transplant dependent first, but if I had a heart attack, stroke (for which having an MPN puts its carriers at risk) or other significant health event in the meantime, I'd be ineligible for a future SCT.   Secondly, as only one potential donor match was found, and it was not a "perfect match", the chances of success were hindered significantly. Also, during this appointment, the gravity of undergoing an SCT was driven home to me. HARD. As MF is especially difficult to treat via this method, there are a number of points at which an SCT can fail. This can leave the...
1 comment
Read more

Canada's Stem Cell Donor Registry.

Post-assessment, I've started raising awareness about the need for Canadians aged 17 to 35 years of age to sign up for the Stem Cell Donor Registry located on the Canadian Blood Services website. Selfishly, my goal is to have a perfect donor match available when it's time for me to be the recipient. Of course, others will benefit from increasing the number of donors on the registry, but I'd be lying if I were to say that my motivation was anything but self interested. The first step in raising awareness has been to appear on CBC Radio's supper hour radio show Mainstreet to talk with host Matt Rainnie and Brandon Peacock,  Community Development Manager (Ottawa) /  Donor Relations & Collections ONN  about the registry. You can listen to the interview here . If you or someone you know is interested in signing up for the Stem Cell Donor Registry, you can do so here . It's my understanding that all that's required to register is a simple swab of your mouth. 
Post a Comment
Read more