Friday, 29 July 2022


I can only call to mind the way you look at this present time. I can barely comprehend all these versions of you
Versions of You - Maximo Park

I owe you an update on the 10 weeks since I last posted

Don't expect this post to be insightful or witty. All my myeloma deserves, right now, is a scrawl in the margin reading "what a load of shit". I think I've been putting off writing in the subconscious hope that I'd turn a corner, reach a better point, have good news for you. But I'm beginning to accept that that moment may still be a long way off, if it's coming at all. I can't be bothered to try to reconstruct a chronology of the last couple of months. Frankly, the "story" doesn't matter. I merely stumble from one little drama to the next.

I'm still on the clinical trial. In theory I am receiving one dose of elranatamab every fortnight. In practice, we're yet to get anywhere near a routine. I've been in and out of hospital with cytokine release (including a 10 day internment over my birthday). And the dosing regime is frequently derailed by neutropenia or anaemia or both. I'm on regular G-CSF to support my neutrophils, but it doesn't always seem to help. And I've had quite a few blood transfusions. Last week I got diagnosed with an infection, which I'd clearly been suffering from for a while, but which hadn't been detected because my body wasn't running a temperature. It was "only" a rhinovirus, but I just don't have the physical resilience to deal with things like that. It was pretty grim. Another of the (many) occasions where I'm left re-evaluating the preceding week(s) and thinking "oh, so that's why I was feeling so shit". Life is just a sequence of events. It doesn't feel like it has direction. Far from seeking the light at the end of the tunnel, I'm increasingly resigned to the fact that I'm living in a labyrinth. We may just be going round in circles for all I can tell.

Right now it's actually a month since I last had a dose of the drugs, because of the various hiccups. I'm due back in next week, by which time we're hoping I'll have sufficient neutrophils to enable dosing. The lack of even a basic chemo "routine" makes life really hard mentally. I have no idea what even the next few days look like. I'm making several visits to the hospital, most weeks (a long way from the "once a fortnight" promised by the clinical trial protocol), and every appointment has the potential to turn into another melodrama. Will I get dosed or not? What new problem might we find? Will I end off on a ward for a week? Are the drugs even working? We did at least get a couple of encouraging light chain results suggesting my numbers are finally dropping - and quite abruptly, halving twice in a month, from 1,000 down to 250. I'd like to hang on to that as a positive, but having subsequently had a whole month without treatment, I fear they're probably creeping up again by now. That's another reason why any semblance of routine would be so valuable. Until I have confidence that I'm going to get my next dose on time, how can I pretend we've got the disease under any kind of control? At the moment we're really only attacking my myeloma sporadically.

My other major problem has been mobility, which has been really bad due to a combination of pain and fatigue. I've been effectively housebound much of the time. I looked at the step tracker on my phone, and one day recently I managed just 206 steps. Even going up and down the stairs is a drag. Going out of the house is only possible with my e-scooter, or a wheel chair. I was lucky to be able to attend Latitude Festival last weekend - a minor miracle in the context of recent weeks, and an incredible positive boost to just be among "normal" life. But I only did it by being wheeled everywhere. Much thanks to Marisa and my boys, and also to my brother, Matt and his family. Without them, it would have been impossible. As well as the physical pain, there's the utter exhaustion that comes with anaemia - I don't have to walk far before I'm exhausted. I've always dreaded ending off in a wheel chair. But to be honest, the alternative is so much worse that when the time came, I was just grateful. Still, my life is incredibly restricted, and my world remarkably small.

The clinical trial is in part to test dosing strength, and clearly the dose I'm on is difficult for my body to withstand. It is, presumably, to blame for my low blood counts. I think it must also be in part responsible for some of the pain. And I'm aware I'm beginning to get peripheral neuropathy in my hands, which is currently just an annoyance, but could become much more of a problem if it progresses. In theory I'm supposed to get my doses by now without requiring pre-dosing with steroids, but in practice we're yet to manage a steroid-free dose without me ending off in hospital again with cytokine release. For the time being we've decided not to even try. Steroids aren't nice, but they're better than spending a week in hospital. But whether the drug becomes any less arduous over time, who knows. The plan is supposed to be another 20 months of this.

I'm alive. But I'm not really living. It saps my ability to be interested in anything, to invest in anything. And to top it all, it utterly disrupts the rest of my family, who have no choice but to come along for the ride. We are all supposed to be on our way to Sussex for much of August. But all I know for certain is that I'm due back at the hospital at 8am on Monday to see if my body is in a fit state for another dose.


Anonymous said...

Good to hear from you Alex, even if it isn't great news. Sounds pretty rough and that is putting it mildly. Rhinovirus in the middle of a heat wave, boy oh boy 🤬

Matt Allum said...

Wow, sorry to hear you're experiencing so much disruption and so many issues with this treatment. Just about to start my chemo this coming Tuesday, so I'll be on the whole hospital life and family disruption journey too. Keep strong, you can do this.

Anonymous said...

Thankyou for the update it didn’t make easy reading …but glad we know . Sending much love to you all xx

Anonymous said...

We are sending you lot's of love and light in your incredible journey.

Anonymous said...

Alex, thank you for the update - really difficult to read and digest but that’s nothing compared to what you and your beautiful family are living with. Sending so much love to you all xxxxxx

Anonymous said...

Thanks for these lovely comments… I’ve been hibernating really these last few months, not even having the energy to respond to messages. But right now things are - I think - finally looking up. There’s always hope, but sometimes it’s hard to see it in the darkness. I think it’s important my blog diarises how grim myeloma can be - to be honest the words can never do it justice. But important too, to recognise there’s life to be had again, on the other side. Those of you on your own chemo journeys… hang in there. The world is waiting for us to get back on our feet

Anonymous said...

Alex (not sure why I’m showing as “anonymous”)