Myeloma

    Do I worry unnecessarily about catching bugs?

    CW: Medical talk.

    Read More →

    Things they don't tell about cancer

    CW: Medical talk. One thing my doctors didn’t tell me when I was diagnosed with myeloma 13 years ago is that you can literally shink.

    Read More →

    A new notebook

    I’ve just created a new section in my bullet journal for September. It’s the last one I have any room for in the notebook. Given my prognosis at the end of last year, I didn’t think I would be doing this. But, things have changed, and I have even had the confidence to buy a new notebook for October and onwards.

    It’s not exactly one of my highest priorities regarding my health, but I will be interested to see how much of the new notebook I get time to use!

    Gratitude

    Lying in bed thinking of some of the things I can be grateful for:

    • I have a wonderful wife who loves me and looks after me 💕💚
    • Old friends and family visited yesterday for afternoon tea and a fish and chip dinner 💕
    • Children stayed for a wide ranging discussion that included ‘How long could you survive by yourself on a desert island?’, to son talking about IT qualifications he’s doing for his post-construction job
    • More old friends coming to a 1970s themed dinner tonight — salmon mousse and cheese fondue
    • New line of cancer treatment might be showing signs of positive response (early days but fingers crossed 🤞😷
    • Dedicated Dharma teachers who guide me on a spiritual path that is meaningful to me🙏🕉️
    • Inspiring people on social media and in real life communities who are trying to make the world a better place — it doesn’t always feel like it, but there are a lot of us
    • Knowing that most people are essentially good and want the best for everyone

    Thank heavens for morphine. (That’s all I have to say.)

    Another day in the hospital day ward

    Another day in the Kenepuru day ward for a blood top up. Keeps me out of mischief, I suppose.

    CW: Adverse reaction to medicine

    Read More →

    Today’s drugs

    CW: cancer and drugs

    Read More →

    Blurred vision giving me a new appreciation of web accessibility

    One of the side effects of the rather large doses of steroids I’m on for my myeloma is that they can affect my vision. I often find my sight feels like I am stuck in a heavy mist. Not all the time; it comes and goes day-by-day. It doesn’t seem as though my sight has become more blurred; it is more like a soft focus filter over a camera lens. But I certainly wouldn’t trust my eyesight to drive today!

    Read More →

    New cancer treatment underway already

    CW: Cancer treatment.

    Read More →

    Hope can be a dangerous thing when it comes to our health

    When you’re face-to-face with serious illness or death, hope in an unattainable cure or treatment can be very emotionally damaging.

    I mentioned in a blog post a couple of weeks ago that I was being considered for a newly-funded drug to have another crack at my myeloma. It’s now become available and I am into my first round of 21 days on pomalidomide (tradename Pomilide). I’ve only taken 2 capsules so far, which isn’t long enough for any side effects to show up.

    Read More →

    Another night in hospital

    It’s been an interesting and slightly disturbing couple of days. What started as a hospital appointment for a CT scan to plan some radiation on what we thought was ‘something’ on my lower back that needed a zap turned into an overnight stay in the hospital and the prospect of some very complicated treatment in the worst-case scenario.

    Read More →

    Faith in dealing with illness

    When my haematologist told me in November last year that, after 13 years of treatment, they had run out of publicly-funded options for treating my myeloma and I had, as a worst-case scenario, a few weeks left to live, it was a bit of a shock. “You could be dead by Christmas,” were his exact words. And yet, here we are, officially in the second half of the new year, and I’m still hanging around—a bit slower and shorter than before—but above ground!

    Read More →