Wake up to reality

Ok, so I thought I ought to update people on where I am since my last post.

Not an awful lot has really changed but my head is totally screwed at the moment. In summary, I have known that my paraprotein numbers have been rising, but I think somewhere in my head I felt that they weren’t an accurate reflection of what the myeloma was doing, and that I must be fine….after all, I was playing netball, walking the dog loads, running after the kids and decorating our house. How on earth could I have properly relapsed? My fabulously expert consultant must have got it wrong and had probably just over egged the whole situation??

Even when I felt my back crack playing netball, I made myself believe it was just an injury, that I could keep playing and that I was fine. My team mates kept telling me to stop, but I couldn’t do it. Perhaps a part of me knew I was fooling myself and I think at the back of my mind, I was worried that this might be the end of my sporting life – I wanted to play as much as possible until then. I’m not sure playing myself into so much pain that I was wincing all over the court was sensible and I knew that….but continued to do it 😦

After a postponement of my PET-CT scan (due to me painting up a ladder within the 24 hours beforehand!) I finally had my scan a couple of weeks ago and got some of the results on Thursday. I’ve been told that I have active myeloma in my pelvis and spine and that this is likely to be causing the pain that I’m in.

I don’t know fully what it all means as my consultant hadn’t had the full report back – he could confirm that my verterbrae hadn’t collapsed….a good thing of course! But he seems to have suggested that there could be damage that can’t be seen to the naked eye. He’s on holiday this week, so I’ll just have to wait till next week to know the full story. But in the meantime: Stop the netball. Stop the decorating. Stop lugging new toilets upstairs.

I had assumed that the pain would go once I go through the next 12 months of treatment. Nick has suggested that it might not. The whole thing has now scared the living daylights out of me. I spent an hour sobbing on Nick last night – it’s not always easy to be positive as much as I try. I don’t like upsetting other people with what I’m going through so I think I tend to put a brave face on it. But as I’ve always said, this is my place to spill my guts out and tell the truth of how I feel. I do sometimes find that hard – I know other people who are in a worse place, both with their myeloma, and also those just struggling with hard life situations. But I need to be able to be honest with myself somewhere.

When you get through the first treatment of myeloma, when you finally get into remission (or a very good partial remission as I did), and when you eventually allow yourself to believe that you are going to see your children into their secondary school, it is hard to be realistic about that situation changing. For a long time into my remission, I felt like I had been a fraud. I’d told people I might not make 5 years with my fundraising, and here I was 9 years later still in remission. Did everyone think I’d lied to them? Had I? Maybe I didn’t really ever have myeloma (yes, even that thought went through my head!).

Even when I was taken off my maintenance therapy in November, I didn’t really believe that I would relapse officially. And then I accepted it a bit. But I still kept telling myself that it would all be like last time. That all I need to do was to survive the treatment and then we’d get another 5-10 years of remission again. And of course by then, there’d be a cure for me.

But this last week, has made me realise that things might be different this time. Last time, I didn’t have any pain or any damage. Does that mean that my myeloma is more aggressive this time? Does that mean that it has mutated? What will that mean for how my treatment works? What do I do if it doesn’t work. What do my family do if the treatment doesn’t work. One of my myeloma friends has had exactly that happen and it is a total head f*ck if I’m honest…there are no other words so I’m sorry if I offend with that language. And last night all of my fears and sadness spilt out onto poor Nick.

I’m back to being scared about what our future looks like and how long I’ll be here to enjoy it. Stupid really – I think I should have enjoyed the ‘fraud’ period more! I will stop myself thinking like this as I know it doesn’t help any of us. But it’s hard when you’ve allowed yourself to think that you’ve got it all back and then your world comes tumbling down again.

I know I’ll pick myself up again. Nick is the most amazing man in the world and I just couldn’t do any of this without his love and support. But who supports him? He does have people, but isn’t great at accepting anything. And we’re both quite similar in liking to think that we can cope without other people. I’m not sure if he’s more scared this time too….it’s never quite as straightforward second time round. I’m 10 years older. My body won’t be quite as resilient. It’s already weakened a bit from the first round of treatment.

Anyway, this has been a bit of a rambling post. Not particularly upbeat – sorry. Hopefully I’ll feel a bit more upbeat next time I write…..

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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11 Responses to Wake up to reality

  1. sparkles1964 says:

    One day at a time Deb. Take stock and enjoy Today. As for being a fraud, I get that with My Version of Myeloma- LCDD. We have only this life, let’s just roll with it. Much love. Xx

    Like

  2. Chris Ratcliffe says:

    So gutted hon.

    Looking forward to seeing you tomorrow. Can give you the big hug that I’d like to give now.

    Cxxxx

    Sent from my iPhone

    Like

  3. alexbicknell says:

    Objectively, you know you’re right. It might be harder this time. But also, (none of us actually knows) it could be that a few cycles and you are back in remission. It’s an enormous thing to get one’s head round. And then one worries about making a big deal about it. But it is a big deal, even if you and me would rather it wasn’t.

    I hope my griping didn’t just add to your worries… I’m sending another big fellow-traveller-hug your way.

    Like

    • Deb Gascoyne says:

      Gosh Alex no never edit what you write! As hard as they are sometimes, your blogs a) teach me to think outside of own scenario b) remind me how important it is that we all write truthfully for our own sanity.
      It is important to think through everything however hard that might be. Maybe if I think of the hardest scenarios, it’ll all just feel easier!
      Take care – think about you and your family lots.
      Deb x

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  4. Elizabeth Cornelius says:

    Hi Deb
    What an up and down disease this is, no two people ever seem to have the same reaction,remission or result with the same treatment. Hang in there you could have just the same response the second time round as well. There appears to be no rhyme or reason why some peope achieve remission and others don’t. You could be super lucky all over again. Positive thinking is better then any wonder drug. Like you I have had 8.5 years in complete remission after SCT but in the last few months my p.proteins are now a number from being undetectable for all those years, couldn’t believe how lucky I was to stay in remission all that time. Now I have back pain which I am hoping is just a strain but always in the back of my mind I am thinking is it something more? My p.proteins have stayed the same this month so hoping it will be a slow rise and treatent can be delayed for a while. Sending positive thoughts your way.

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    • Deb Gascoyne says:

      Hi Elizabeth.
      Thanks for taking the time to write and congratulations on such a great remission.
      I know you’re spot on with what you say. Just had a bit of a blip. But there’s no point worrying about the ‘what if’s?’ when they might not happen. It’s just sometimes hard not to!
      All the best and here’s hoping the pp’s stay down for you!!
      X

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  5. diane curtis says:

    Oh Deb, what a rollercoaster of emotions you’re having to experience, it’s good that you can spill it out in this space and have so much support. I’m thinking of you
    Diane xxx

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  6. meeshymeesh says:

    Hi Deb, Thanks for your rambling post and keeping it real… I am not sure if you remember me but I am the Brit with MM living in South Florida. I emailed you about a year and half ago about a dear friend of mine in the UK with MM. Unfortunately the MM was too strong for her and last Feb she died. I was back home last summer with her husband and kids and it was a real wake up call to all of us.

    I think I mentioned when I wrote last that I first found your blog when I was in hospital having my first of two stem cell transplants in Dec 2011. I instantly connected to you as Brits just see things and react to things differently to the Americans and it felt comforting to read your posts. Life gets busy as you know and although I read each and everyone of your posts and followed your MM journey I just did not get around to writing. Your life and timescale of MM events seem to be very similar to mine made me connect even more. I promise I am not stalking you.

    Anyway I thought life is too short and I need to reach out and properly say hi and introduce myself. My name is Michell Gillet and I was diagnosed with Smoldering MM at the age of 40 in July 2009 at the time my kids were 8 and 3. I watched and waited and was monitored monthly with blood tests as was the protocol here in the USA then. In Mar 2011, I started 4 rounds of Revlimid, Velcade and Dex as induction therapy. That proved in effective so we tried a combination of other treatments including a weeks stay in hospital for a combination therapy of VDT-PACE. Hair fell out but MM still there so first auto stem cell transplant in Dec 2011 which only got me to partial remission so Dr scheduled a second (Tandem) for Marc 2012. Remission finally in July 2012.

    Due to the stubbornness of my MM my Dr was able to get me on Carfilzomib maintenance. This involved infusions twice a week. I did this for 1 year and then decided as I was still in remission to stop maintenance. So I have basically been off and on – well mainly off all meds for 5 years.

    About 2 years ago I decided to take up Triathlons and trained and completed several Sprint and Olympic distances. I was also mad enough to complete a half marathon. I hate running and definitely more of a swimmer but it was just one of those bucket list things I wanted to try as I had noticed from my monthly blood get that my MM had started to creep back.

    At first my Dr and I thought that it was ‘lab’ errors but then we started to see the upward trend in Feb of this year. So we upped my dosage of Revlimid from 5mg to 10mg and now 5mg. Although the M spike or paraprotein is still low it is increasing which men’s it I becoming resistant again to the Revlimid. I am seeing my Dr on Friday and I think the plan is to try another drug. We are very. Rey lucky here in the USA as we have many new drugs that have been approved for MM in the last 10 years.

    My daughter is now 18 and is going of to college in Boston, Massachusetts in Aug and my son is now 13. So it will be a new normal with the start of the new treatment.

    So finally after so many years I have gotten around to properly getting in touch. Michelle Gillet

    Michelle

    >

    Like

    • Deb Gascoyne says:

      Hi Michelle
      Firstly I am so sorry that your UK friend didn’t survive. It’s just horribly hard isn’t it.
      It’s lovely to hear from you though and to hear more about your journey. Amazing what you’ve achieved in your remission – well done you. I hate running too but I’m not sure whether I’ll go back to it if I can’t go back to netball. I’m still hoping I will though!
      So, do you have any ideas what drugs will be offered to you tomorrow? I think you’re well ahead of us here in the UK but it’s all an interesting time!!

      Anyway, please keep in touch

      All the best
      Deb x

      Like

  7. Lorna A says:

    Hi Deb
    Mike would have said “don’t worry about stuff you can’t change.” Like you I am more of a “what if” merchant, not that it helped. Of course I also know how difficult it all must be for Nick, not being able to actually do anything other than watch you going through treatment. The physical doing stuff is the easy bit, the mental support is hard.
    It is all so difficult for you all, I can’t see the future anymore than you can, but I do know you have a fantastic consultant and I trust him to do his very best.

    Lorna x x

    Liked by 1 person

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