How many times can we put ourselves through this war, like all the lovers that have been here before? How many times can we watch this fade into nothing?
Fade to nothing - Rag'n'Bone Man
Fade to nothing - Rag'n'Bone Man
Checkup ... KFLC = 679 ... κ/λ = 92 ... Hb = 10.4 ...
Another set of frankly inconclusive blood results. The κ/λ ratio is up, but not (yet?) above the threshold. My light chains are up more significantly - their highest level since 2012 - but this potentially means less than the ratio. My anaemia is a bit worse, but not yet disastrous. It seems my mm doesn’t want to make the choice about when to start treatment.
I can’t help wondering, given my myeloma’s behaviour, how long it was like this before I was diagnosed. As of next month, my "relapse" will have lasted longer than my post transplant "remission" (28 months remission, 27 months relapse... and counting). If my mm is this ponderous, it seems unlikely that it emerged from nothing to nearly kill me in just 2 or 3 years. I think I might have had it for even longer than I’ve previously assumed.
In clinic, yet another doctor. Since I moved from my regular slot with DrC, I’ve not seen the same doctor twice. This is a simple consequence of pressure and stretched budgets - the clinic barely keeps its appointments; trying to match patients to doctors would tip it over the edge. I’m sure tory ministers don’t take this into account as they squeeze out "efficiency". But my dignity is sacrificed by the repetitive need to explain my symptoms, the endless investigations, and the looming treatment decision. My grumblings lead to a visit from the head consultant. And the upshot is this: the preferred treatment for me is a clinical trial (Myeloma XII) that is only just about to begin at Kings. Once it’s ready, they’ll want me on it. No more waiting on my blood results: the cumulative risk of kidney damage meaning it’s not safe to sit indefinitely in the current position. So in the end, it seems, the trigger to treat will be a drug protocol, not my health. Funny thing, life.
The clinical trial could involve as much as 10 months of chemo, sct and more chemo, depending on my response and how I get “randomised”. It’s a big journey to set out on, and will mess up much of 2018. Whether I can string the start date along another 2 or 3 months, who knows.
In a side plot, I’ve been having my kidneys investigated for potential disease or stones. The latest instalment was CT scans, and I’m hoping for the all clear. The pain appears to have passed - along, I’m assuming, with the stones. The consultant here says if the CT is clear, she'll discharge me. If I don’t get an all clear, the next investigation would involve a camera into my bladder, and I don’t like the thought of how they’d get it in there. So, here’s hoping.
The digested read of all this is simple: it is pretty much inevitable I will be back on chemo very soon now. That doesn't exactly fill me with joy. But for now, the watch and wait continues. I'm doing my best not to care or obsess; to live each day; not to waste the time I have; to keep positive. It's hard.
I can’t help wondering, given my myeloma’s behaviour, how long it was like this before I was diagnosed. As of next month, my "relapse" will have lasted longer than my post transplant "remission" (28 months remission, 27 months relapse... and counting). If my mm is this ponderous, it seems unlikely that it emerged from nothing to nearly kill me in just 2 or 3 years. I think I might have had it for even longer than I’ve previously assumed.
In clinic, yet another doctor. Since I moved from my regular slot with DrC, I’ve not seen the same doctor twice. This is a simple consequence of pressure and stretched budgets - the clinic barely keeps its appointments; trying to match patients to doctors would tip it over the edge. I’m sure tory ministers don’t take this into account as they squeeze out "efficiency". But my dignity is sacrificed by the repetitive need to explain my symptoms, the endless investigations, and the looming treatment decision. My grumblings lead to a visit from the head consultant. And the upshot is this: the preferred treatment for me is a clinical trial (Myeloma XII) that is only just about to begin at Kings. Once it’s ready, they’ll want me on it. No more waiting on my blood results: the cumulative risk of kidney damage meaning it’s not safe to sit indefinitely in the current position. So in the end, it seems, the trigger to treat will be a drug protocol, not my health. Funny thing, life.
The clinical trial could involve as much as 10 months of chemo, sct and more chemo, depending on my response and how I get “randomised”. It’s a big journey to set out on, and will mess up much of 2018. Whether I can string the start date along another 2 or 3 months, who knows.
In a side plot, I’ve been having my kidneys investigated for potential disease or stones. The latest instalment was CT scans, and I’m hoping for the all clear. The pain appears to have passed - along, I’m assuming, with the stones. The consultant here says if the CT is clear, she'll discharge me. If I don’t get an all clear, the next investigation would involve a camera into my bladder, and I don’t like the thought of how they’d get it in there. So, here’s hoping.
The digested read of all this is simple: it is pretty much inevitable I will be back on chemo very soon now. That doesn't exactly fill me with joy. But for now, the watch and wait continues. I'm doing my best not to care or obsess; to live each day; not to waste the time I have; to keep positive. It's hard.
2 comments:
hey Alex - understand your frustration about the doctors/consultants. Bossy me had to write an email to Gudjons doctors last time and demand an extra appointment to discuss the latest results. We hadn't met with her since January.
She actually told us the same thing protocol x11 is set to investigate: that the new drugs give better response with second sct than the first one. We were both thinking "damnit, another sct with all the crap that comes along with it" until the next blood results showed remission again! So.. back to limbo. Now we wait until december again..
It's tough with continuous limbo. I hope you get some answears soon - especially if your kidneys are acting up.. :(
Thanks Harpa - sounds as though Gudjon and I are in much the same situation. Let's hope the next round of treatment is gentle on us both.
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