Falling to pieces

Well after a fairly upbeat post yesterday (mainly written the day before), I’m not feeling so good today. In fact, I sunk to a brilliant low last night. It always seems to happen after I’ve had relatively positive news from my consultant and I don’t know why at all.

I’m just really fed up today and trying to work out why. Nick has been trying to help me too as I couldn’t even get out of bed until about half an hour ago. So I thought I’d use my blog for what it was always meant for…getting things off my chest and trying to understand why I’m so bloody miserable.

  1. Thought of Transplant not having been successful – no matter what I said in my blog yesterday, this is really worrying me. I am so scared of not getting the time I had hoped for, and just because I got longer for my first transplant, doesn’t change this. I don’t want to spend the rest of my life on treatment, or worrying about my future. I try to be so positive about things and then it just doesn’t seem to go my way. And being in limbo just makes life really hard to plan for. Work. Family. Holidays. I know none of us know what tomorrow brings, but the knowledge it ‘might well’ happen, is much harder to live with than most people can imagine.
  2. Bad Back – just after Christmas, I developed a muscular pain in my back. It isn’t myeloma related (I’m 99% sure) but I’m in a lot of pain and can’t do anything without it hurting. I’m needing paracetamol 24/7, using magnesium spray, on pregablin and have a near permanent hot water bottle on it. And still it hurts. That means I can’t exercise, can’t get out on walks (especially in this icy/snowy weather), can’t help as much around the house and am generally feeling totally useless.
  3. Lockdown – still shielding after 10 months. Whatever I have said, I am well and truly fed up of being stuck in our house. The only time I have got out in the last 10 months has been to walk Marley or to go to hospital. I can count on my hands how many times I have seen friends. I am sick of zoom being the only way I can mix with people and even more fed up that my condition has stopped the rest of the family being able to mix with their family and friends. I listen to other people being frustrated by lockdown, totally understand it, but am now starting to lose sympathy. Try doing 10 months in our shoes, with a transplant in the middle of it, and see how it feels. I’m sort of fed up of trying to sympathise with everyone as if what we’ve gone through is on a par. It isn’t. It’s been really crap. For all four of us.
  4. Lack of purpose. I knew that this period post Christmas was going to be hard. It is why I set myself up to do the London to Paris. But my back means I can’t get on the bike yet, and even when I can, I will need to borrow Sam’s as I can’t get an ebike for love nor money. I also really want to work. I still do a tiny bit of social media work but it doesn’t bring in much money these days as I don’t do online training and so can’t really do much promotion. I’d really like to go back to doing Community Fundraising, and had made that decision before Christmas, but the fact that I don’t know where my treatment is taking me, makes that very hard. I don’t want to put any charity in the position where they take me on, for me to have to leave. I’ve even thought about a general shop role, but I can’t do that until I’ve been fully vaccinated and until lockdown eases – and even then, they aren’t normally flexible enough to take into account my hospital visits. So I end up being responsible for the house. Cooking and cleaning. Boring. Uninspiring. Feel like everybody’s slave.
  5. Putting on weight. I suppose this comes partially from the bad back and the inability to walk or exercise. Also not helped by eating too much cheese over Christmas. I’m also frustrated that I never lost the weight during that useless transplant, despite being so ill and not eating for 3 weeks. It all feels very unfair.
  6. Homeschooling. Lots of people know how depressing this is. Fed up of moaning at the kids, nagging them to do their best rather than the bare minimum, and fed up of feeling like the school isn’t really living up to expectations.
  7. Nick back at work. Christmas was lovely. It really was. I enjoyed having Nick around all the time and spending proper time with him. I find it hard now that he is upstairs working all of the time while I continue to have no purpose but to make sandwiches and dinner. I know he doesn’t feel like that, but I do. We had booked a few days away for half term to try and get away from the house for a bit, but of course that is now cancelled and we don’t know when we can book next as we don’t really know what Rebecca’s GCSE’s look like now. Even the summer is hard as Rebecca may or may not be going to Romania with Girl Guiding, her and Sam may or may not have DofE expeditions and I may or may not be on treatment. So many unknowns and by the time we do know, everything is likely to either be fully booked or far too expensive.

I know that everyone has their crap to deal with at the moment. The last year has been hard on everyone. But I think it has all suddenly come down on me. I feel like I just want it all to end. I don’t really want to be around Nick or the kids today. I just want to curl up and someone to come and take all this shit away from me. I can’t answer the phone or emails and really just don’t want to do anything. I know that I’ll pull myself out of this but at the moment, I almost don’t want to. I’m not writing this for sympathy. It wouldn’t help anyway. I just needed to be honest and get it out there.


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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7 Responses to Falling to pieces

  1. Margaret Jackson says:

    Hang in there, darling Deb! Having been in lockdown since March last year (and on my own – apart from the cat who doesn’t understand why I don’t want to get up at 5.30 in the morning to provide her with breakfast!) . You are not alone! Not that that will be much comfort when you are feeling wretched, I know, but even with a positive outlook on life, I have also plumbed the depths in the last few months (Christmas was AWFUL!) and so can sympathize with your feeling as if you are falling to pieces. Much love

    Margaret xx


    • meeshymeesh says:

      Hi Deb,
      I just want to write quickly and say “ have a down day or two”. It’s perfectly normal and natural. Not so long ago I was feeling the same and did not want to see my family and spent the entire day and night in bed. Felt so naughty but it felt so much better.
      I am due to have my first Dara infusion on Monday as I relapsed on Revlimid and my recent BMB showed 60% plasma cells. So after nearly 8 years of remission it’s back to hospital visits full of infusions.
      Will write to you on Monday as I will have plenty of time on my hands as you well know whilst having the infusion.

      Liked by 1 person

      • Deb Gascoyne says:

        Hi there. Sorry that you’re back on treatment. But dara hasn’t been too bad for me so hopefully it’ll be ok for you. How was your first infusion? Surprised they’re not doing the injection for you although perhaps they need to see how the infusion affected you first.

        Liked by 2 people

      • meeshymeesh says:

        I will be on Dara, Pomalyst and unfortunately Dex. I have managed to escape de for the last 5 years and not looking forward to starting it again. The main reasons for not wanting to be on it is the weight gain ( I have spent the past 4 years working with a training to get fit and have been doing triathlons for the past 3 years) ,depression and Dex are a bad combo and Dex also raises my blood sugar level to a level that is too close to being pre diabetic. Dr will monitor and try and get me off it in about 3 months.
        I was told my treatment would be 7 hours so I assumed they were giving my the IV for day one only but no I got the 5 min sub q but was still at the hospital from 8am till 3.30pm.
        Labs at 8am, Dr at 8,30 and then bum in the treatment chair at 9am. Dosed up with Benedryl, anti nausea meds, paracetamol, Dex, and another anti reaction drug. After that had been administered, (not sure how long that took as I fell asleep) then the 5 min Dara injection and then fluids and observation until 3.30pm
        I have been told that next week should be 3 hours only..I will start Pomalyst in a months time. Give my body time to get used to the Dara and then start the Pomalyst that way I will know if I have a reaction which drug it is.

        Liked by 1 person

    • Deb Gascoyne says:

      Aw Margaret thank you. I’m sorry that Christmas was so bad and hope that things are looking up a little now. Would you like to FaceTime?
      Lots of love xx

      Liked by 1 person

  2. Taryn Barclay says:

    My dear Debs, it is totally shit (am I allowed to swear on these comments😳) and it’s okay to just let it all out. You have had a totally rubbish time even without this damn pandemic. I think you are the bravest person I know and you are amazing with how you find so many things to be positive about, I am thinking of you so much! Wish I could pop over for a large glass of wine and throw some plates around, just to let it really all out 😆

    Liked by 2 people

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