Walk away and taste the pain. Come again some other day Taste The Pain - Red Hot Chili Peppers No sooner had I predicted in my last blog post that I would have four or five months ahead of me before needing to begin new treatment, than things changed With my blood counts deteriorating, last month we made the decision to change my treatment plan and start on a new set of drugs. I was due in clinic to kick off that process, but before we could even get that far I was overwhelmed with pain. I’m pretty good at dealing with pain (myeloma is a painful disease so I get plenty of practice), but it ..read more

My job is very boring I’m an office clerk Echo Beach - Martha And The Muffins Can’t escape the feeling this is frankly boring. Routine. 9-5. Yawn. I still have to talk about it. Up to you whether you still need to hear it! (Please don’t tell me you don’t find it boring… that would be weird) I haven’t felt like writing this for months. (I’ve distracted myself with poetry. A proper website will follow during 2024, but here’s a temporary blog on which I’ve posted some poems - PolemicAlex.blogspot.com). I’m bored of the same old updates. As, I’m sure, are you. I decided I couldn’t live fore ..read more

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 ..read more

Everywhere you go, always take the weather with you Weather With You – Crowded House Another month, but probably not another dose. Plus school holidays and the accommodations that entails I was walking through the hospital yesteroday and recognised one of the nurses from my stay in ICU. I think I was surprised, more than anything, to have made such a certain identification, from somewhere in the post-coma fog. Before I knew it, I had stopped her and introduced myself. She didn’t remember me (fair enough, ICU is a high traffic environment). I said how grateful I am to them all, and how diffic ..read more

We were born with nothing and we sure as hell have nothing now Things We Lost In The Fire - Bastille Dosing day today. More importantly … MRD- … Today I got my BoMB result from the other week. There were no detectable myeloma cells. If there’s anything there at all - and realistically, we assume there is - it’s at a level below the sensitivity of the tests. (By comparison, at their worst, previous BoMB results have shown myeloma to constitute up to 80% of my bone marrow.) My remission continues. Alongside blood results, urine tests and my latest PET scans, this confirms not only complete res ..read more

How does it feel when you wake in the morning? How does it feel feeling sun in the shade? How does it feel when you slide down a sunbeam? How Does It Feel To Feel - The Creation The bit of me that just likes writing - I increasingly self identify as a writer - got the better of me. There's no news in this post, just reflection. If you were only after a status report, I refer you back to last week Normally I tell dialm stories after the event. But this one won’t have an obvious end point. When it ends - which I think it will - I will not immediately notice. There won’t be a single moment when ..read more

You know she's waiting, anticipating, things she may never possess Try a Little Tenderness - Campbell, Connolly and Woods * I have a conflicted relationship with Dialm right now. Reflective of my desire to move on from the recent past. There are a several posts currently in draft that I could share, but I can’t be bothered to get my thoughts in order enough to finish the job. It’s entirely possible they will remain in that form forever. You won’t have missed much, so don’t worry.  I’m in that peculiar period where recovery merges back into the mundane. I’m increasingly unencumbered by t ..read more

Drink drink drink drink drink new blood. So we need to drink new blood. Blood! Drink New Blood - Iggy Pop * Cycle 13 begins (though I missed cycles 9, 10, and 11 due to indisposition) My first month back on the sauce (cycle 12) has passed pretty uneventfully. I seem to have had far fewer side effects than I was experiencing prior to Christmas. I’m not counting my chickens, until we’ve had a few months as proof of concept (concept being: “maintenance treatment worth living on”), but I’m optimistic that this is the new way of being. So far, as well, I’ve avoided the neutropenia that repeatedl ..read more

Oh momma dear, we're not the fortunate ones. And girls, they wanna have fun Girls Just Want To Have Fun - Cyndi Lauper Your dose is nearly over. This is like the bit where the IV machine goes “beep beep” to warn you you’ve got five minutes left, only the nurses are always too busy to disarm it, so it just “beep beep”s for those five minutes *. Just be warned… the last five minutes can seem to take an eternity. My steroidal state could write, at length, about the range of beeping patterns emitted by machines (and some associated madmories), but I’ll show restraint, and stick to important stuff ..read more

Never free, never me. So I dub thee unforgiven. You labeled me, I'll label you. So I dub thee unforgiven The Unforgiven - Metallica I promised you a dose. This is Part Two. Let me know if you’re feeling at all nauseous. We can give you something for that, but it might make you constipated, but we can give you something for that, but it might cause a rash I’ve been reflecting further on my position in myelomaville. It’s so long now since I started treatment that I’m very distant from the initial fear that came with my deadly diagnosis. But I’m still not cured, and even the treatments only jus ..read more