You think you’re alone until you realise you’re in it. Now fear is here to stay; love is here for a visit. They call it instant justice when it’s past the legal limit.
Watching the detectives – Elvis Costello

Conscious uncoupling

When I began this blog, I did it with two audiences in mind. One was my friends and family, who I want to keep informed about my illness and treatment, and to avoid myeloma becoming a dominating topic in our conversations. I don’t want to talk about it all the time because it is boring and repetitive for me; depressing, scary and unpleasant for you; and because it evokes emotional reactions of sympathy and pity which are hard for both of us to deal with. It has been much easier to write things down here, my thoughts gathered and presented more coherently than they would ever be in conversation. Leaving us free to talk about music, travel, politics, children… the weather, whatever. (Even Fortnite. Not Love Island.) You know; stuff, life. Not myeloma; hospitals and death.

The other audience was people who find themselves in the same position I have. My myeloma diagnosis was the most bewildering and awful thing that has ever happened to me. (With apologies to the egos of those girls whose hearts I broke, or who broke mine, when we were young – those pains faded very quickly.) I was desperate to find anyone whose experience I would recognise, so I would feel a little less alone. And there really wasn’t much to find. The hospital waiting room is populated by people a generation older than me, and even now, when I spy a younger face there, I’m not inclined to impose myself on them, since I have no idea where in their journey they are or how they are feeling. To approach someone simply because they are vulnerable, is fraught with risks. Outside the hospital, I could see nothing.

I started to put the blog together in February 2013, as I was preparing for my (first) stem cell transplant. The trigger was the thought of how to communicate with friends. But I already had quite a bit written down. The shocking events that had happened to me were liable to roll on repeat in my head. I could scarcely believe it all, it seemed so outrageous, and I had a fear of losing the clarity of my own memories in the confusion. So and I wrote them down as a way of giving me permission to forget; to get it out of my head. Then I spent a bit of time pratting around with the name of the blog, and its visual identity because I’ve spent far too many years worrying about things like that, and sprinkling it with song lyrics as a way to soften the blow – make it seem a little more humorous and a little less I’m-going-in-to-hospital-and-I-might-die. As I went through treatment and recovery, it flowed easily. I enjoy writing. I created a persona here. I endeavoured to keep it on topic, but its surprising how quickly one can convince oneself that what the world really needs is to read one’s thoughts and views on just about any topic. That expressing it validates it and makes it meaningful. I’ve been flattered by those people who have praised my writing. For a while, I enjoyed my role of saying the unsayable, posting gruesome hospital pics and so on.

Within in it all, I guess, was the yell. The refusal to go quietly. The refusal to spare other people the realisation that I had had, that the world is a cruel and awful place.

A lot has happened since. Not least, I’m all yelled out. I know it sucks. You know it sucks. The ongoing impact, especially during the last six months of chemo when I have been quite ill, quite low, and very restricted in my activities, has reinforced for me what a life sentence it is. I have to continue to find my way through it, to lead a fulfilling life despite it, and certainly not let myself be dominated by it. My most recent hospital records suggest myeloma has taken 6 inches off my height. I cannot prevent that. But I don’t have to give it 6 points of my intellect, 6 facets of my personality or 6 degrees of my mood. My early yelling was pretty factual: this is what it’s like to get that phone-call after which you know life will never be the same. There’s just as many thoughts swilling in my head now as then, but these days its much more ethereal stuff about purpose; motivation. About families; relationships. It’s not linear. It doesn’t lend itself to a diary. To be honest, its not really stuff that’s comfortably broadcast at all.

I no longer need to seek out the stories of other people, either. I’m guessing few people, facing second line or subsequent treatment, need mine. We’ve had plenty of time to think things through now. The need is gone. I suspect that role of dialm is done. The world has moved on too with social media (there’s a fantastic facebook group, of which I have for a while been an admin though I’ve just stepped back from that role) providing a much easier way for people to find each other and reach out for common experience. But anyway, this blog still remains. I hope anyone, plunged into that awful fear, might still find dialm, and realise they are not alone.

If you’ve read enough of what’s already here, you’ll understand what I’ve been through as well as I’m able to express it. Anyone with newly diagnosed myeloma who reads it will find, I hope, evidence that the world doesn’t end, no matter how much it may seem as though it is going to. My life expectancy now is as long – probably longer – than the day I got my diagnosis. Assuming there’s such a thing, for a relatively young person like me, whose current treatment involves drugs that have only existed for a very few years. I prefer to see it as a complete unknown – that’s more reassuring, but also, I think, more true. Can any of this really be further explored? If I consider this blog as a whole, I don’t think it can be much further improved by not knowing when to stop!

That leaves, though, those whose main reason for continuing to read here is as a way of keeping up with events, keeping in touch with me. It is you I’ve found it hardest writing for, these last few months in particular, as the entries seem to get quite repetitive. “I took my drugs; I was a bit ill; I felt a bit down; but I’m getting myself together again”. I’d like to save you feeling the obligation to keep reading. I’ve said all I needed to say. You’ll all just have to accept, from here on in that on any given day I’m feeling as good, or as bad, as my predicament permits. When my myeloma is in abeyance, I intend to be on top form. When it rears up, less so. If you see me looking grey, and not upright (that’s usually the clearest sign) you can assume something myeloma-related ails me. I’ve come to accept that those moments come with little warning, often unexpectedly. My list of novel symptoms and short term issues is by now quite substantial (many of them not recorded here), and no doubt that will continue. I might get a few years – maybe many – drug free after the upcoming SCT. But I might not. And beyond that, I will be forever popping one pill or another, and living with the various side effects and symptoms, accordingly.

You’ll have grasped by now where this is heading. Lately, I lost the urge to yell. I’ve said it all already. It doesn’t improve with repetition. I’ve concluded now is the right moment to stop. (It marks a complete cycle, from the approach to my first SCT until the approach to the second.) Novels end. Movies end. TV shows that don’t know when to stop, eventually jump the shark. I think the time has come for this story. I’m going to finish with a few epilogues, some thoughts in my head, over the next 10 days, and then sign off.