Soon to start

Ok so after my last post, I have had my results back and my paraprotein has gone up again. Not fast enough to worry massively but enough that my consultant wants me to start treatment in July.

So we’re back in next week to talk it all through and set dates etc and then it looks like I’ll be starting on the 29th July. Luckily he’s prepared to be flexible as we’re meant to be doing some work on the house. I won’t be able to get it finished and will still have to decorate on treatment, but hopefully all the dirty messy work will be finished before I start.

Not sure I’ve quite got my priorities right…someone said to me the other day, “are you delaying to have some quality time with the kids?”……oops! Well hopefully we can do both.

I have to say that whilst I can’t bear the thought of being ill again, and going through all the awfulness that we suffered in 2010/11, I am pleased that it is a definite now…and that we can plan now. I’m a bit of a control freak with things like that. I need to know when I can work, when I’ll need help with the kids, when I’ll need dog walkers! I hate asking for help but I’m better when it’s all planned.

So the plan now is to keep things simple. We won’t be booking in to see people until we know how the treatment affects me. And if we have booked things, please bear with us if we have to cancel. Sometimes it can be emotionally difficult as well as physically difficult. And if that’s the case, we need to be able to do that…and for me, I need to know it won’t be held against me.

It’s going to be a tough year or so ahead of us. 6 months of treatment (twice a week at hospital), 3 weeks in hospital and then 6 months of recuperation. But we’ve done it once and we’ll do it again. And hopefully it’ll be as successful as it was last time.

We’ve told the children. They’re being amazing at the moment. I hope so much that will continue. People who have followed my blog will know we have always sworn not to lie to them. That makes it really hard at times. I don’t always know whether it’s right. Rebecca asked if I could die from my treatment. How do you tell a 14 year old that there is always a slim chance, without scaring the living daylights out of her. But I couldn’t say it wouldn’t happen as even we don’t know that. You hear of the ‘worst case’ scenarios and I’d hate them to ever think that we didn’t give them the opportunity to talk about the reality. So I talked more in terms of any treatment having tiny chances of dying but that mine had been really successful last time. She seemed to take that fine. I hope!

I’m sharing this one post on Facebook (and excluding her from seeing it) so that people know that my treatment is starting again. If you want to follow my new journey without wanting to ask questions your best bet is to sign up and follow this blog. Otherwise, feel free to call, text or email – I’m always open to a chat!

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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 and am now waiting and watching....again.
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4 Responses to Soon to start

  1. Francis Kelley says:

    Hi Deb

    I have followed your Myeloma journey ever since I was diagnosed in September 2014. I introduced myself very briefly one afternoon when we were in the waiting room at the QE. I have since moved from Halesowen down to Woodstock and now get seen at The Churchill in Oxford. I tend to keep a very low profile although I have been to a couple of Infodays as I prefer to deal with it in a fairly private way. When I introduced myself I thanked you for all your fundraising efforts and your willingness to share your story. I, and my wife, have both found your blog both interesting and supportive. My Myeloma story is fairly straightforward (so far) in that I had 5 round of VTD followed by a transplant in May 2015 but no maintenance. I have been very lucky and have remained in remission since then. I suspect that this is simply due to luck although I have made lifestyle changes and take curcumin every day, both of which could be playing a part. Anyway to cut to the chase I wondered if you would mind sharing with me why you are prepared to have another transplant given the availability of novel agents? Incidentally, I found the QE a bit of a shambles in some ways but NOT for the transplant where they were excellent. One final question concerns Zoledronic Acid – does your consultant (Guy Pratt?) continue to encourage it every month or have you been off it for a while?

    Many thanks

    Frank Kelley

    On Mon, 17 Jun 2019 at 15:38, Debs’ Journey with Myeloma wrote:

    > Deb Gascoyne posted: “Ok so after my last post, I have had my results back > and my paraprotein has gone up again. Not fast enough to worry massively > but enough that my consultant wants me to start treatment in July. So we’re > back in next week to talk it all through and set dat” >

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    • Deb Gascoyne says:

      Hi Frank. Thanks for the message and for getting in touch. I remember you coming up to me 😊
      I’m glad things are going well for you – great news!!
      My consultant felt that since I’d done so well from the first transplant that it would be mad not to do another. I suppose the thought being I could come off most more invasive drugs if it comes off! Although I would stay on dara after the transplant – i presume as a type of maintenance.
      There are bits about the QE I love and bits I’m not so sure about. Guy is great! Re so meta I asked to come off it about 18 months ago as I believed it was contributing towards broken bones in y feet more regularly. We haven’t spoken about whether he feels I need to go back on it yet but I’ll try to keep off it as I’d like to keep playing sport through my treatment if I can!!

      Hope that helps?
      Keep in touch
      Deb

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  2. Francis Kelley says:

    Hi Deb

    I started a response to you earlier today using my phone but it disappeared somewhere so apologies if somehow you received it and now I’m repeating myself!
    Thanks very much for your prompt reply it is much appreciated. I will have to make a decision about a second transplant when I relapse which I suppose will happen sooner rather than later since it has been almost 49 months now. Rather than worry about it I will wait and make a decision when necessary.
    I feel a bit guilty about my QE comments as I didn’t realise they would be in the public domain. I suppose they are struggling with a lack of staff and an all round shortage of resources like the rest of the NHS.
    Having read your blogs ever since they started I’m confident you will get your house sorted, sail through treatment and continue to be a marvellous mother and wife. You are obviously a very strong person with an excellent support network there should you need it.

    Good luck and keep blogging.

    All the best.

    Frank

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  3. Lorna A says:

    Hi Deb
    Thanks for keeping us up to date, I was about to message you via FB as we hadn’t heard from you (mother hen instinct in me!) I too will be following your blog, being a silent “cheer leader” where necessary. I’m not next door, but if there is ever anything you think I can help with, just FB message me. xxx

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