Friday, 20 September 2013

No news is

Courage to carry on. I’ve got to be oh so strong. ‘Cause it’s a long way home
Home - Rudimental

Check up: ... Haemoglobin 11.9 ... Neutrophils 2.04 ... Platelets 208 ... Kappa FLCs ?? ...

I spent much of August ignoring – not even really thinking about – my myeloma. Fatigue snared me just once, which is remarkable given the amount of cycling, canoeing and swimming I did. Not to mention the long drives, hot weather, late nights (courtesy of good friends and French wine) and early mornings (courtesy of Lyndon).

My myeloma symptoms, as I told my doc today, are largely non-existent right now. My back is still improving, though it does require regular effort on my part. The aches get less, the mobility gets more. But I'm certain it is mostly a musculoskeletal consequence of all those fractures, as opposed to being directly attributable to myeloma, any more. I do think there's a residual amount of myeloma pain in my hips (I guess that's what it is, since it doesn't seem to be going anywhere). The doc asks me about it and I explain. When I go on to say that I'm taking no painkillers, I can practically see him scratching out the notes he's been taking. Myeloma pain at a level that doesn't need medicating? Doesn't count!

It would be nice if I could completely ignore myeloma. But that is something I'm not allowed to do. I had a conversation with someone a few days ago, who I'd only just met. At the end of my sorry tale (I don't often choose to tell it, face to face, but it sort of came up in conversation) she fished hopefully for an "it's alright now" epilogue from me. Well, it isn't aleffingright. I've still got it. It still impacts my life. In very tangible ways now, my life – all our lives – are different from how they would have been without myeloma. Aside from the massive interruption while I was ill, we are making different choices, different plans, from what we would otherwise have done. Different doesn't mean any less good, but it does mean I can see the imprint of myeloma all around me.

I had my bone strengthening treatment on Monday. Things were going very slowly, and I had a school pick-up to get to. A year ago, I wouldn't have dared to unplug myself from the drip. Now, I figure I can make these decisions for myself . (I should point out that I'd had all my drugs, it was just running saline at the time.) I did give the nurse the opportunity to remove my canula for me, though to be honest, I'd do that myself too, if I needed to. I feel like an old lag in the chemo unit these days.

Clinic this morning. The dreaded numbers. The monthly tick-tock of living with myeloma. I haven't spent the week worrying about it, but it is always a distraction, nonetheless, in the days between them taking the blood and me getting the result. My blood counts are all moving in the right direction. Nearly normal white blood counts, and less anaemic. But I knew that already. What I am trying not to fixate on, this morning, is the magic number that is my free light chains, the pollution that my myeloma deposits in my blood and which tells me whether my myeloma is on the move. Not a healthy fixation. So maybe it is a good thing, when I get there, to discover my light chain result from this week isn't up on the system. Right now I don't know my light chain score. Unease, for a moment, and then calm. After all, you probably don't know your light chain score either, and that's OK, isn't it?

I feel good, therefore I am good. I just need to keep believing that my myeloma is dormant, and I can get on with my life. The doc clearly thinks so – he's told me not to come back for another 2 months. Maybe by then I'll have forgotten all about it. (Ha, ha.)

You know I said it's true. I can feel the love. Can you feel it too?
Feel The Love - Rudimental


Anonymous said...

Hi, I just found your blog on the Myeloma Beacon's blog aggregator. Alex, you really summed it up pretty well. I can totally relate. I was diagnosed in 2011 at age 49 with a wife and two young sons. There is no way to sugarcoat sucks! I am doing well so far but I like how you describe the "monthly tick tock of living with myeloma". I have light chain myeloma and waiting for those results for me is the pits. Hang in there, brother. Terry L. from New Jersey.

Anonymous said...

So great to hear that you had such a good vacation and got to live a "normal" summer life. I've missed your blog. Good to hear from you again. I'm gearing up for my transplant right now. Hormone injections tomorrow! Woohoo!

Alex Bicknell said...

Thanks Terry, it's reassuring to know other people feel the same. You hang in there too - I hope all is well with you. Alex

Alex Bicknell said...

Lovely G-CSF. Woohoo indeed. I always got pulsating bone pain from mine. Such fun. But it passes soon enough. Good luck with the harvest.

SCT seems an intimidating obstacle in front of you - much easier when it has passed. Strength to you


Alex Bicknell said...

Got the missing result in the post today. kappa-FLC 63.9 - almost exactly unchanged since July.

tccomments2013 said...

hello, my friend,

I missed you on the blog, but did a happy dance in my head that your were enjoying the summer with your family. anyone else's good news is good news for me. just before the 4th of july, I was diagnosed with metastatic uterine cancer - nothing to do with the metastatic breast cancer. I am nearing the end of radiation, then will have a course of chemo. I still follow many of the myeloma blogs, and do what I can to lend support or, more fun, join in on some delicious rant. in this case, yours, I am so happy for you - yay! kappa results. Hugh would be very happy for you, too. I am glad he is not here to feel the anguish I know he'd endure with this most recent diagnosis -WTF??? but going thru it without him by my side is so difficult. ah, well, I am experimenting with feeling indifferent - take THAT, fucking cancer. it is what it is.

just keep doing whatever makes you happy, alex. I think of you often, and send you gentle hugs, along with...

love and light,

Karen TC (Sutherland)

Alex Bicknell said...

Hi Karen

I'm sad to hear that you are having yet more treatments and travails. There's a small part of me that (occasionally) deludes myself that having been served up one big portion of shit somehow that's "my share", and nothing else bad can happen. Of course the opposite is true - life's random twists take no account at all of what has happened already. It's unfair enough the first time. Even more when it comes round again and again.

Indifference is a virtue too, in its own way. I would be indifferent to a lot of what happens to me too, if it wasn't for my children.

Thinking of you - sending you strength as always. We all need it