Taking the ups with the downs

I began my last post (in June!) with “So, with my new resolve to write shorter, more frequent posts, here’s the next one…”

And I did write that one post. Apparently, more frequent posting was not to be. I have been unable to concentrate on anything at all for months. I’m not sure if it’s because of the steroids I’ve been taking since last December, chemo brain, anxiety/depression or a mixture of all of these. The fact is it doesn’t really matter what’s causing it. But it does upset me, sometimes more than others.

So this is a concerted effort to maintain a record for myself and other interested parties and to not let this blog whither and die the death of no posts and no readers. It will not be one of my most literary posts, I’m sure.

Timehop 18 months

Yesterday was 16 November, marking exactly two and a half years post-transplant. It would have passed by unnoticed, if it hadn’t been for Timehop.

Such is my current state that I didn’t feel at all celebratory. I suppose as time passes, surviving becomes less newsworthy. Having said that, I intend to celebrate my three year anniversary in May. I’ve no idea how, but I’m open to suggestions…

A few months ago, I began a post, which was to be a year in photos. I take a LOT of photos. I thought if I could post photos, it wouldn’t require much writing and I could still share my journey. It didn’t happen. I couldn’t concentrate sufficiently to even do that.

So, mentally, this is how it is for me right now…

Partly anxiety – not of anything specific, but possibly due to a sense of needing to do everything I want to do, right now because at some point it could be too late. No one warns you about that side-effect. I suppose there is also a subconscious awareness that a relapse will occur at some point and while I really don’t spend time thinking about or worrying about when that could happen, it must play a part in this low-level generalised anxiety.

Partly effects of steroids – high as a kite; running around doing everything all at the same time, which is not the same as multi-tasking – more like no-tasking, as it is rare for me to actually complete a task. Rushing around; going everywhere; being interested in all kinds of things; taking up all manner of exciting opportunities and putting myself forward for an impossible variety of voluntary and/or creative activities. Speeding even when I sit still – the surface calm is a lie. My mind is usually rushing along like a river in flood, often causing the same amount of chaos. I wear everyone else out with my mania and then finally myself, when I just crash, my mood swings and I just need to sleep and cry a lot.

Partly chemo brain and chemo fatigue – I can’t remember things, I can’t do some of the things I used to be really good at, things that require a very small amount of concentration, my brain gets so very tired so easily and quickly. Any mental task I consider needs to be very quick and easy, otherwise I just fade out and can’t maintain focus. I can rarely remember why I turned around in the kitchen to do or fetch something. I mean literally, as I turn, the thought vanishes into vapour and I’m left in a dither, frustrated and more anxious. That thing I can’t recall may be of vital importance…

Even writing this is making me feel tired and unfocused. I can’t recall all I wanted to write. I think I may have to stop here and just post this and hope I can return to write another day about what is happening physically and medically.


About Jet Black

I began blogging because having been diagnosed with Multiple Myeloma, I wanted to share my experiences of living with an incurable cancer. Through blogging, I discovered that I enjoy writing. I have always chosen to live life for the journey, more than the destination. This is as true for the act of writing as it is for living with myeloma, so these are two things I do: I live and I write!
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14 Responses to Taking the ups with the downs

  1. Thanks for this Jet, so honest and so well articulated even though it must be so hard for you. love ev x


  2. Well done Jet to put this together even though you feel so fractured and unfocused. I have a small inkling of how it feels just to be on steroids, that you manage everything else too is a testament to your essential togetherness; even if it doesn’t feel like it. ❤


  3. Mavis Nevill says:

    Hi Jet
    This is a strange journey we are on. I’m also in remission, but have just had a down time.
    You are an inspiration for so many of us. I do hope one of the ups comes soon.
    Lots of love. Mavis xx


  4. Linda B. says:

    So good to read your post – was getting worried about you since you haven’t posted in a while. Do know what you mean about well intentions and starting out to accomplish something but finding it hard to complete the task. Hope you are feeling well. Take care.


  5. scanfie says:

    I know exactly what you mean in the paragraph that begins, “Partly anxiety – ” although I didn’t really think of it as anxiety. I am almost a year and a half from my stem cell transplant and enjoying remission . I too strongly feel the need to get “everything” done before the remission ends. If it doesn’t end for many years, I suppose I will be all caught up and completely organized.


    • Jet Black says:

      Haha! Fat chance!

      For me, the getting everything done isn’t about being completely organised, it’s more about going to all the places I want to go, seeing all the things I want to see, taking part in all the activities I want to do, making all the things I want to make, reading all the books I want to read, spending time with all the people I love, etc.


  6. Morag says:

    Well done on doing the post Jet. Alison and I talk about, “drive by thoughts,” that pass through your head but are then gone before they can be translated into action. x


  7. I wonder if it’s any consolation that I feel as if life is speeding up and I’m racing to keep up, and I am just a MM cheerleader for my SIL… perhaps there is something to this earth spin increase that is having an effect on us. At any rate, it was good to hear from you, to hear the raw truth that you are so very good at expressing, and in between the lines the hope that this too will pass… intending that it is from my mouth to God’s ears and it is so… many hugs.


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