Monday, 4 March 2019


One reason I am reluctant to write here more, or more frequently, than I have to, is because it perpetuates the sense that this is some kind of soap opera. But although it has some soapy characteristics, and endless plot twists, I certainly don’t find it entertaining. However, if I don’t post, it’s hard for anyone else to have any awareness of what’s going on. Those who have seen me recently will know I look well enough. But looks can be deceiving. (Though if I showed you the track marks up my arms, you’d get more of an idea of what’s been going on.)

There was a glimmer of good news last week, with my light chains down for the second month in a row. That is positive, important, and rare. Only the second time, since I started treatment, that I’ve had 2 consecutive “good” months. Worthy of celebration.

Unfortunately, at the same time, we have a new drama: abruptly, I have very few platelets in my blood. (Over the last month, my platelet count dropped from 195 to just 8, and it is stubbornly staying that low, despite several transfusions to top it up.) These are the cells that enable blood to clot: being without is frankly dangerous. After some investigation (including an emergency bone marrow biopsy - yippee), the Drs believe that the cause is “treatment toxicity” - ie the drugs are to blame. So, I’m off treatment (even though it was working) and awaiting a decision on whether we’ll attempt to restart, or try to move on to transplant.

In the meantime I’m tied to the hospital. I spent half of last week in the treatment room, and I am there again now awaiting yet another blood transfusion. For the time being, I think that’s how it will be. My nurse asked me this morning how I’m coping. If I’m honest, I’ve stopped worrying about the bigger picture and the long term. It’s so endless, relentless and unaccommodating that I’ve given up bothering to try to interpret what each twist and turn might “mean”for my prognosis. Whatever we’re fretting about today, it will probably be something wholly different in a few days time. There’s no point trying to read the runes. I’m pretty much beyond caring.

The short term is where it’s at. In the short term, I’m doing my best to accept my circumstances. I cannot make a plan from one week to the next - and that’s been true largely without exception for well over a year now. I waved my kids off to school today, not even knowing whether I will be able to pick them up this afternoon. I make plans and appointments... and then cancel most of them. I have moments of lucidity when I can think ahead, imagining projects I might undertake or participate in. And then I have the rug pulled from under me again, and am humbled by the realisation that I have absolutely no control over my life from one day to the next. I don’t know which days this week I will spend in the hospital. I don’t know if I will restart chemo next week, or not. I still believe that I will, eventually, have my transplant, but whether that is going to happen this month, or next, or whether it won’t be for another six months, I haven’t a clue. I will be out of circulation for several months, but I don’t know which ones. You can probably appreciate how difficult it is to process that kind of information. But unless you’ve been there, I don’t expect you to be able to comprehend what it feels like. I don’t know whose birthday I will miss. I don’t know whether I will be able to witness any particular performance or milestone. Will I be there for your class assembly? Will I watch your next match? Will I speak to your violin teacher? I don’t know. Will we go away for the school holiday, and if we do, will I come too? I don’t know. Right now, I’m waiting for my platelets, and that’s my horizon.

And all the time, we’re heading for this mythical time, post transplant, when I will be in remission and living a “normal” life. But I find it hard to form a mental picture of that phase of my life-to-come. It seems almost implausible. Certainly it isn’t sufficiently compelling for me to use as a mental anchor through the storm. I must navigate the now, accepting simply that it is what it is, and that what will be will be.

So... that’s where I am... There’s not much anyone can “do” - I have the NHS by my side, and they will keep propping me up. Spare a moment for Marisa and the boys, though: they too have to live my uncertainty.


Lorna A. said...

I am sorry to hear that you are all having to go through such terrible uncertainty. I don't have anything useful to say other than whatever you do, don't wet shave (they banned Mike as it always proved so messy!) :)

Stephen Law said...

Regarding your platelets, Just wondering if you went on the DT-PACE regime that you mentioned previously, as it seems like a sudden big drop? My platelets were about 196 after CTD induction (from 280) and then dropped to 6 directly after the Melphalan as part of the ASCT. I only had one platelet infusion. A Month after the 6 recording it had reached 44 and three months after that it was 110. Nearly 18 months on my platelets seem to have plateaued at about 140, so still waiting to get above the magic 150. I know it is a different scenario, but the platelets can bounce back once the chemo is omitted. Stephen

Anonymous said...

My husband was given injection of Romiplostim as platelets had dropped to 20. First injection didn't do much and dose was doubled 0ne week later Platelets jumped up and he was able to continue on Dara after a few more doses His problem was the same as your diagnosis.He is in 11th year of Myeloma treatments and is currently on Dara every two weeks and is doing ok. Hope this may help you. Good luck. M

Alex Bicknell said...

It’s just very frustrating.

Yes, certainly no wet shaving. Even going to the toilet is a bit dicey. Last week they read me the riot act in no uncertain terms about what I can/can’t do, and about what events would require me to run back to the hospital. Basically, anything that might cause a bruise, or the merest hint of infection would be enough. So I’m just trying to keep out of harms way, and accepting that I’m being kept safe by donations, until however long it takes for my bone marrow to recover.

Alex Bicknell said...

No, we never got as far as the DT-PACE. Its the lenalidomide wot dun it. Annoying, because it was working.

Yes, my only previous experience of platelet issues was after my last sct. The rest of the time, I’ve always had a surfeit. I remember one nurse once telling me I had enough to sustain an entire ward!

It isn’t that unusual, I’m told, for lenalidomide to cause these kinds of problems. Though the fact that it happened now, and so abruptly, is odd. My consultant told me last week that my myeloma “doesn’t follow the rules”. I didn’t think myeloma had many rules, but she clearly thinks there are some norms, and mine doesn’t respect them. (My myeloma shares my personality, it seems.)

At least after the biopsy last week we’re all reasonably confident that nothing more ominous has happened - I haven’t developed an autoimmune condition, or become myelodysplastic. And I should be grateful for that.

I don’t know whether the count is going to bounce back. I’ve not been given any expectation at all of how long it might take - they specifically told me there’s no way of gauging how long it might be. I just have to be patient. I’m working on the assumption that I’ll be needing platelets every couple of days... until the day I don’t.

It’s certainly no joke. But I’m feeling fine, so on a practical level it’s only the restriction of being in the hospital every day or two that I have to live with. That and the doziness which comes with regular antihistamine injections (Believe it or not, I’m allergic to platelets!!!)

Alex Bicknell said...

Thanks. I’m sure it will, like everything else, pass. I’m hopeful I will get to have my transplant soon enough.

And dara would be the next port of call, when I need another regime. My docs are very keen to use dara in combination with other things though, not just as a monotherapy in the way NICE prescribes... so I’m not sure exactly how my dara days will unfold, when the time comes.

The challenging aspect of my life is that I live an endless succession of crises. When one resolves, another begins. Last week was the first time in a year where my treatment seems to have worked for 2 consecutive months. But instead of marking progress, I’ve been plunged into a new drama, and spent even more time in hospital than I normally do. It’s the endless succession of events that makes it so exhausting.

Hopefully the sct, when it finally happens, will mark the transition to a period of less drama. But I know that the next relapse, when it comes, will no doubt bring the same rollercoaster with it. It would be amazing to be in the position of having a treatment plan that worked and had any sense of routine about it. The last year has not been like that at all. I’m tired, frustrated and very bored!

But... at least I’m at a place where the myeloma is fairly well suppressed. I have no significant pain. I haven’t broken anything for months. I don’t get much fatigue, or many infections. I can count my blessings.

I hope your husband continues an uneventful life on dara for many months to come.