Stupidity rules!

So after a good few days, last week I took a total dip. I kept feeling lightheaded and dizzy and it totally threw me and got me really down. I was meant to be getting stronger not weaker. Nick and I talked and decided perhaps it was to do with a change in my antiemetics and that I would ask my consultant last Thursday. The consultant agreed that they could cause diZziness and suggested I started to decrease them slowly.

Because that’s the sensible thing to do with any drug change isn’t it. You certainly wouldn’t come straight off anything unless that was advised would you?! So you can imagine what both Nick and I thought yesterday when we realised that somehow, I hadn’t put my antidepressants in my pill box…and I hadn’t therefore had any for nearly a week…the time that I’d pretty much felt awful for!

Unsurprisingly, today I am a new person! I feel almost normal again (just the exhaustion and quick to tire still there ) my sickness etc seems to have decreased massively and I am so happy to be feeling like I actually want to take part in what the family is doing.

I can’t believe how stupid I was to have missed that tablet. Out of all of the ones I could have missed it was probably the most serious one. Also explains why I sobbed myself to sleep on Thursday night! But I’m just relieved that I worked it out. Lesson learnt most definitely.

Oh and the other good news is no more consultant calls for two weeks! Will go in for bloods then and assuming things are good still, we’ll have to make the decision whether I’ll go back into daratumumab or make the decision for a treatment free period (very appealing). I think I’ll probably end up back on the dara – mainly because I’ll feel guilty if I relapse quickly and I haven’t done what was offered. But the good news is that if I do go back on it, I can probably do it slightly less frequently which might be a nice compromise.

The other thing that happened this week to make us very grateful was that we heard on the news that the ward I was on at the QE Birmingham had, worryingly, had 3 cases of covid-19, coming from asymptomatic nurses. Given I’d only been out a couple of weeks, it made us feel very lucky for our timing. We always knew that we had a window of opportunity but didn’t expect it to be such a small one. Thankfully I think those affected are ok but it’s very scary for those still on the ward, especially since it has been closed to new patients. To those who think covid is a conspiracy, think again.

So I’m hoping for a nice family weekend where perhaps am a bit more with it. I’ve already prepped and made a guacamole for dinner and I’m not on the floor! Didn’t manage to go to say happy birthday to my niece, but to be fair that was about not being out in the cold for any length of time. Back to the jigsaws and some games … who knows, maybe I’ll even stay up late enough to have a film night with them 🥰🥰

About Deb Gascoyne

I am wife of one, mother of two (& a dog!) and a person in my own right😊. I have used my diagnosis of myeloma to allow me to focus on what I CAN achieve and not what I can't. My blog is a way of me spilling out....it is for me more than you I'm afraid. But if it helps you along the way, that is an absolute bonus for me :-) Diagnosed in 2009 with smouldering myeloma, I started treatment in 2010 and had a SCT in 2011. I’ve was on maintenance until November 2018 but my figures went up so officially relapsed. I have been on dara since 2019 and had my second transplant in September 2020. Still on dara and keeping fingers crossed.
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5 Responses to Stupidity rules!

  1. Margaret Jackson says:

    Do you have a pill container for morning/noon/night so you know when and where your pills are? Saves having to remember if you do it once a week!

    M xx

    Liked by 1 person

  2. meeshymeesh says:

    Hi Deb,
    Just checking into see how the recovery is going. I am sure you have caught up on all your puzzles and board games (or bored games) as my 14 year old son calLe them ! If it’s not electronic it’s no worth playing – his words not mine.

    I am due to get my labs done on Friday. My hips and back have been hurting much more of late so I am concerned that the results will show this. I don’t usually have bone issue – it has always been anaemia for me in the past. My specialist wants me to change from Revlimid onto something else so we will see what the results bring. I would prefer a pill rather than having to go in for infusions – especially during COVID.

    Hope you all have a happy Halloween

    Liked by 1 person

    • Deb Gascoyne says:

      Hi there.
      I’m doing really well thank you. Walking and cooking and gardening (with thick gloves!). Feel very positive at the moment thankfully.
      How were your bloods on Friday? Why does your specialist want you to change treatments? I think I’d want to stay on revlimid too if I was you. Anyway, hope you’re come to a decision that you’re happy with. My only regret is that I didn’t fight harder to stay on revlimid maintenance – don’t know if it would have made a difference but…..
      I’m back on dara as my maintenance from today. Although there was a mix up so I’m now having to wait a couple of hours for an injection that will take 1 minute. A bit annoying but nevermind.
      Hope you’re well
      Deb

      Liked by 1 person

      • meeshymeesh says:

        Glad to hear you are doing well. I hear the UK is back on lock down. What crazy times we are living in.
        Just waiting for the results to come in. Should have them all by tomorrow.
        I started Revlimid nearly 12 years ago . The first year was when I was initially diagnosed and leading up to transplant. Then after transplant I did a year of Carfilzamib as maintenance then has a year break from all meds then went back on Revlimid and have been on and of Revlimid for the past 5 years.
        I usually take a break when I am training for a triathlon but my m spike has been slowly increasing so far decided to stop training and focus on my myeloma again.
        Despite being back on it for the last 12 months my no m spike has been slowly riding so I think Revlimid has run its course.
        So will probably go to pomalidamide which is the newer version of Revlimid which is still in pull form as I don’t want to do hospital trips at the moment with COVID. It just depends on how well I tolerate it. If I don’t tolerate it then it will be Dara. How do you find Dara? Did you have many side effects when you were on it before ?
        Enjoy the gardening and glad to hear you are making great progress

        Liked by 1 person

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