Back on the Rollercoaster

It has definitely been yet another rollercoaster over the past couple of months! After my last results showed an increase of 2, my February results were stable…..brilliant news of course, although I can’t really explain rationally why there was a small part of me was frustrated at the lack of pattern and the fact that my head seemed incapable of keeping up with the change of direction.

So I spent the next few weeks, trying to get my head around the fact that perhaps the rise of 2 was just a blip and that, yet again, I’d told too many close friends about it, when there was nothing wrong with me. Such an attention seeker. Such a fraud.

And then last month, my bloods came back having risen by 4. And I could tell from the tone of the email, that my consultant felt that this wasn’t good news…that and the fact he asked me to come back for bloods to check if it was an anomaly or whether we are dealing with a clear relapse. So yesterday I went back to have them redone and next Thursday, Nick and I will head back to find out more. That said, I can’t wait till then so have already asked to be told the results asap….and since 11am yesterday morning have therefore been watching my phone non-stop….argh!

I’m back to reading myeloma articles and starting to look into treatment options. There’s been some great news this week about a new drug being approved by NICE for first time relapse patients like me. So, I’m imagining that I’ll be deciding between that and going on the Myeloma XII trial …the first would be ongoing treatment, whilst the second would hopefully push me into remission again….who knows, maybe for another 8 years – but would make me severely ill for a while too.

I’m a bit all over the place if I’m honest. I just want to know if I’ve got to front into treatment and a new Stem Cell Transplant, or whether we can get on with things like normal. I can’t believe I’m back here. Back thinking about funeral songs, back thinking about what I can’t do if I’m back on treatment, back wondering about my ‘Bucket List’. It’s totally crap if I’m honest. I thought I’d got past all that negative thinking when I realised that I’d done so well with 8 years in remission. But now I’m back here, I realise it never fully goes away. The fears, the paranoia, the sadness.

Somehow I will get back to being my positive self. I think I need to get an element of control back to myself – that’s the worst bit about myeloma…you seem to lose all control. I don’t quite how I’ll do this….I’d like to get back into fundraising but I’m not sure how healthy I’ll be to do that, or exactly what I could do. If anyone reading this has any great ideas, I’d love to hear them. It really helps me take my mind off what is happening, but I need something that isn’t too stressful or too demanding if the chemo starts.

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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 been on maintenance since then until November 2018 but my figures went up so am now officially relapsed and have just started DVD treatment (July 2019)
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8 Responses to Back on the Rollercoaster

  1. Lorna A says:

    I’m sorry you are back on the rollercoaster, I do think it is sometimes worse not knowing what is going to happen and once you have a clear path things seem much easier (well that’s how it is for me.) I hope things become clearer soon Love Lorna xxx

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  2. alexbicknell says:

    It’s a tough thing to face up to Deb. But, be strong… you’ll be beating your myeloma for a long time to come, I have no doubt.

    Yes, the dara approval is good news – though bad that it will only be via CDF and silly that it will only be available, in combination, for 1st relapse. NICE are in a mess, I think: failing to make coherent decisions clearly for the likes of you and me. But dara+velcade could be a good potential treatment for you, if you choose it. And so could M12 – hopefully if you went that way it would work better for you than it did for me. Choices. Which is a good thing.

    M12 was hopeless for me, but CRD has worked much better, and it looks like I’m finally on track for my sct – the point being that we just have to put one foot in front of the other, confident that we are strong enough for the journey ahead.

    So, try not to hear too much funeral music. And try not to obsess (says me, sitting in a hospital cafe waiting for blood results to determine whether or not I need a transfusion or can just go home!) Ours is a peculiar predicament, but we’re strong enough to weather the storm. Thinking of you

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    • Deb Gascoyne says:

      Hey Alex. I know – and seeing people like you go through it and stay positive is always a help. Knowing there are others around you is good (even if not for you/them!)
      I did read your last blog and meant to reply…but then got caught up with work and home….something I need to remember to value that I still have!
      Hope you haven’t had to have a transfusion.
      All the best
      Deb xx

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  3. Tim Robbins says:

    Hi Deb

    I think it’s ok for you to have those negative feelings right now; as someone once said to me, the difficult trick is to allow them to pass by without grabbing them too tightly. You’ve got a lot on your mind of course, but hopefully you’ll soon know what the score is and them you’ll feel more positive with a plan to follow.

    On the fundraising front I’m always willing & able to sort out a boozy event (!) – we could do a tasting here and the advantage to you would be that you wouldn’t have to be very hands on with the organisation of the evening…

    Wishing you well for the next part of your journey – hope the rollercoaster settles down!

    Kind Regards

    Tim

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