DIY-HS

Out of the blue and into the black. You pay for this, but they give you that
Hey Hey My My - Neil Young

My current status is “Trying not to care” …

My dose was delayed a week this month, but that doesn’t in itself matter. My 'eloma continues to be unmeasurable. Apparently it did show up (detectable but not measurable) in one recent test - so I'd fail for "MRD" status on that basis. But I really doubt this has much significance. I'd say my status is "good".

Most importantly - no infections. And I seem to be getting through without too many side effects.  Feel a bit fluey some evenings. And I'm convinced it's possible to have more energy than I currently do. But again, I think that qualifies as "good".

This remainder of this post contains material of a ranty nature that may be triggering for some individuals of  sensitive disposition. Please read cautiously ...

What's bad? Hospital. Hardly surprisingly, after all these years, I'm cheesed off with the whole process. Even when I'm in remission, it goes on and on and on. That's just a fact. Inevitable. But it's sad to have to deal with my cheesed-off-ness in the context of the NHS, because the NHS is such an awful mess.

My monthly treatment involves procedures in three different departments in the hospital, which therefore need to coordinate. But unless I'm the self appointed coordinator, I know they don't. Left to their own devices, they could easily book three arbitrarily different appointments, and communicate them to me separately by post. Which wouldn't arrive in time anyway. Plus there's a load of wrap around stuff - referrals (e.g. for physio), vaccinations, tests, prescriptions, the list goes on - that wouldn't happen at all without me organising large parts of it.

Do-It-Yourself Health Service. DIY-HS. Not a good innovation.

The root cause is simple. Not enough staff, and too much turnover thereof. I'm not saying that's the only thing wrong. But it is visibly, obviously, the single most significant thing wrong. A derelict system (would whoever voted for the tories just, please, stop) that pays out on patients. I guess I should consider myself lucky that it pays out on me primarily in timewasting:

“You’ll have to come back tomorrow”

I wouldn't want to be awating diagnostic results, or facing front line treatment, in this environment. People are, of course.