Up, down, down and up!

It’s been ages since I wrote on here – I’d like to say it’s all great news which is normally the case when I haven’t been writing. But I think these days I just don’t have 5 minutes to prioritise a blog post.

I can’t really complain (much) about this. If you’d told me I’d be this busy 13 years ago when I was first diagnosed, I’d have laughed in your face and told you I wouldn’t be here to be that busy! I genuinely didn’t think I would be. Certainly the idea that my life would be full of work, cycling and other such active things, felt a million miles away. I should be so happy and so pleased I’ve done so well.

But somehow life doesn’t feel quite so positive at the moment. I’m sorry if that’s not what people want to read, but as I’ve always said, this is my blog and my safe space. My place to explain (most) things that I’m finding hard and to rant and rave all I need to.

So what has been hard? I’m sure that a big part of it has been the come down after my London to Paris. Nearly two years later, having raised £8,000 and cycled thousands of miles (literally), I think that the idea it is over has been hard. I always promised both Nick and the children, and also my wider family and friends, that I would stop the fundraising once I’d reached my £50,000 target. And I did this while I was cycling to Paris. I am SO proud of having done this within 3 years (and with over 2 years to go before I reach 50) but I think if I’m 100% honest, part of me was a smidgeon sad. I love my fundraising. I love the sense of achievement. And perhaps it’s slightly right to say that it allows me to focus on things other than my health. So I’m sad in some ways that I made this commitment, no matter how much I know it’s right for those around me.

I thought that I’d be pleased to have completed my #50KB450. I honestly believed that it would let me focus purely on my Brain Tumour Research fundraising without feeling split down the centre. But I don’t feel like that at all. I’m sad that people might not feel they need to fundraise for Myeloma UK now – that they might feel it isn’t necessary now. Because it is still SO necessary even if I’m not spearheading it from my end. I’m sad that people think I’m well enough so they don’t need to worry whether they’re making that difference these days. I’m concerned that I’ve misled everyone to the extent that if I’m ok, it doesn’t matter if other myeloma patients aren’t ok. Because that is NOT the case and it’s not ok.

Nick and I were privileged enough recently to go to an event run by Myeloma UK that was discussing the start of their 25th anniversary. All the amazing things that they have achieved in this time, from their amazing relationship with NICE and government bodies, through to funding drug trials for getting patients access to revlimid as maintenance, and velcade as a major player and that’s just to name two. In addition, they have created major patient support networks and resources and become a ‘go to’ for so many charities because of what they have achieved. But there’s still so far to go.

I remember to this day sitting at one of their Myeloma Infodays back in 2010 not long after I’d been diagnosed. My consultant at the time was asked when he thought there would be a cure. He answered that he thought we’d have a cure within 10 years. 13 years on and we still don’t have that cure. More importantly, we’re still not at the point where myeloma is considered to be a ‘liveable’ condition. It is treatable. But it is known that most of us are likely to live a shorter life because of it.

When I was on my bike ride I was lucky enough to chat with some of the top myeloma consultants. Their view seemed to be that the decision will be whether we want myeloma to be cured or whether we’ll be happy with a ‘liveable’ condition like diabetes or HIV. Personally I don’t care so long as I’m able to have a future and not have to constantly worry about it.

This week I go back for my monthly blood tests. Many of you who’ve followed my blog over the years, will know that it’s always been a bit of a rollercoaster as your mind starts playing games with you about what might be coming. But in general, I’ve done pretty well at managing it since my last transplant in 2020. I genuinely think that has been helped by me being in a job that keeps me busy, but most importantly, that I love. But the month before last my numbers went up from 4 to 7. Which I have to say was a total shit show, especially as it was just before my ride to Paris. I was bricking myself that I was coming out of remission. And I felt like I’ve stepped back into the worry of those early days.

Then, on the ride, I spoke with pharma people who told me there was evidence that covid jabs and illness could affect paraprotein numbers and I started to relax a bit. Surely that was it (I’d recently had a covid jab) and I’d get back and my numbers would have dropped. Unlike many myeloma patients, my numbers seem to like to play havoc. They sent to yo-yo like very few others seem to experience. Which is SO difficult. But does allow me to try to be positive when numbers go up. Even my consultants now pay little attention to my numbers until I’ve had 3 or 4 in the same direction. They’ve given up trying to predict anything! So, I came back from Paris ready for them to drop back down.

Pants. They didn’t. Now don’t get me wrong, nor did they go up. So they’re the same. So then I felt like I shouldn’t share it with anyone as I’d worry people and it might all be for nothing. Bloody hell when will I learn?! When will I stop worrying about people around me? When will I think it’s ok that if I’m worried, that’s ok and that’s the thing I should be concerned about? I spend far too much time worrying about whether I’m being positive enough for everyone else around me. But it’s bloody hard work being positive when you’re scared shitless of what might be coming. The mad thing is that I’m convinced when I share things, there’s something up there making me look stupid too, so I’ll write all of this and next week will probably get told my paraprotein has dropped again (here’s hoping!).

None of this has been helped by issues with my shoulders and hip. I don’t think I’ve moaned before about these issues but I’ve had very painful shoulders since about a month before my ride to Paris. They almost feel like they’re going to come out of their sockets when at their worst. And just sore at best. I thought it was linked to the bike I’d borrowed to do the ride (to come away from my ebike) but a month after and my shoulders have been bad again like they were at the time. In addition, I’ve had some pains in my hip/buttock when I walk any distance. Who knows. All of it could just be a case of getting older. But with myeloma you can never relax about these things as they could be something more sinister. So then I worry about mentioning it to my consultant and being perceived as the paranoid, neurotic patient vs leaving it, not saying anything, and finding down the line that it’s my fault that I’ve got bone damage. I know I should mention it, but I’m so conscious that with everything I’ve ever mentioned before, it’s improved straight after!

I have to say, I’m not allowed to relapse at the moment. For the first time, I really feel like it would be unfair. I love my work. I love my cycling. I love so much about my life and am so happy to keep on going just living it. Things have felt like they were as close to normal as they had ever been in the last 13 years since I was diagnosed. It is NOT allowed to change. I don’t want it to. It can’t. Please keep everything crossed for us.

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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 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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1 Response to Up, down, down and up!

  1. Margaret Jackson says:

    Hi Deb Lots to ponder here! You have certainly had a rollercoaster ride over the past 13 years – can’t believe it is that long. You really have been amazing and I really am so proud of you!

    Let’s chat sometime !

    M xxx

    Sent from my iPhone

    >

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