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.

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Your privileges have been revoked.

Freely adapted from the original "Andy Capp" strip by Reg Smythe. Last November, the province's only oncologist/hematologist left PEI. I was fortunate enough, however, to be referred to an oncologist/hematologist in New Brunswick, whom I began seeing in December. Shortly into the new year, I received, while at work, a phone call out of the blue from the Clinical Nurse Leader at the PEI Cancer Treatment Centre. I had never spoken to this person previously, but she had some news for me: Because PEI has not been able to find a replacement oncologist/hematologist, and they had no recourse but to send me to a specialist in Moncton, I and my specialist “do not have privileges" at the PEI Cancer Treatment Centre”. I will also no longer have access to the Nurse Practitioner at the Cancer Centre whom I was set up with for continued maintenance. To be clear, I will now have bloodwork and any transfusions that I require at the Queen Elizabeth Hospital in Charlotte...

My province is losing its only oncologist/hematologist.

My oncologist/hematologist is leaving P.E.I., which means Prince Edward Island will be without one. I absolutely don’t blame Dr. Whitlock. He’s got a life outside of the medical world, and he’s got to do what’s right for him. I sincerely mean that with every fibre of my being. Living in P.E.I. through the week, and seeing your family in New Brunswick only on the weekend has got to take its toll. Then there’s the road travel, especially in the winter. The difficult part, so far and for me, is losing that connection a cancer patient makes with a trusted medical caregiver who — well, not to be dramatic, but it’s true — is keeping you alive. There’s a trust, a bond, and an intimacy a patient develops as the result of putting their life in someone else’s hands. Dr. Whitlock is the third specialist I’ve had since being diagnosed with a blood cancer, and now I'm on to my fourth. Though I'm sad to see Dr. Whitlock leave his scope of practice in PEI, I'm glad to say that he has co...

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