The Good, The Bad and the Ugly

I’ve been meaning to write on numerous occasions in the last few weeks but have been so manically busy that it’s never been the right time. But it’s treatment week at the moment and I’m awake but in bed shattered, so it seemed like a good time!

We’ve had a few good things to shout about, most importantly that our oldest daughter, the one who was just 4 when I was diagnosed, did really well with her GCSE results and got into her college of choice! We’re so happy for her. It’s also a real milestone for us though. When I was first diagnosed in 2009 I was scared I wouldn’t get to see her go to secondary school…and here I am about to watch her head off to college in a couple of weeks. And our son will be heading into his final GCSE year. It’s just so amazing and so important that we recognise these positive parts of our journey.

They’re both making us so proud of them though (most of the time! I won’t go into the frustrating bits that we all get as parents!!). Rebecca has had her first job and is absolutely blossoming with it. We knew that lockdown had prevented so much for her at a time she was ready to fly, and it’s just so good to see her come out the other side and flourish. Sam is growing up, up and up and is a great, caring young man. We just need him to find a job too and all will be great! But in the meantime he has completed his #15B415 (with a month to spare!) and raised an absolutely staggering £8,500 for Myeloma UK and my #50KB450. Super proud of him as it hasn’t been easy for a 14 year older boy!! With a nagging mother!

My results have just come back too and I’m glad to say my paraprotein has remained stable. It seems to like to fluctuate between 5 and 8 but I’ll take that now I know that for me, that is a stable reading.

I have to say that I’m relieved at the results. I’ve been a little worried as my back has been giving me new problems and despite having had an MRI about 9 months ago, you still worry things are progressing. And they forgot to take my paraprotein bloods last month!! But at least now, I can keep going and not be quite so concerned that things are myeloma related!!

This is really important for me as I’m really excited to be applying for jobs as a Community Fundraiser! The delay of the London to Paris made me realise that I couldn’t put it off any longer…and to be honest I didn’t want to put it off any longer. So the search begins for a role! I hope that with my experience I have lots to offer any charity and that it’ll be a great outcome for both of us!! Fingers crossed anyway.

So that’s most of the good stuff. The bad and the ugly is that I’ve still been suffering a lot with my back. Ironically my upper back pain has reduced quite a lot in the last few weeks (thanks to Tracy at Hagley Sports Massage!!) and I had just started to go back to netball. But now my lower back is in agony, I can’t run or jump and I’ve had to pull out of netball- possibly for good. I can’t begin to say how hard a decision that was but it hurt so much to run around the court, even in my limited role as shooter. Anyone who knows me, will know I’m an all or nothing person. The idea of going to train and do a half hearted attempt at playing, just doesn’t work for me. So I’ve made the difficult decision to come off the committee and the team. Who knows if the future will see me stronger, but my body seems to get less able, not more which is very sad.

I’m still training on the bike though! Nowhere near as much as I’ve been trying to save my back a bit, but it has been confirmed that we’re doing the 300 mile / 500km ride over four days in September (15th to 18th!). This is probably a little more than I’d have done going to Paris and it will include my first ever 100 miler (on the first day😳🥴)!! It’s going to be super hard with no support crew (although we will have the lovely Nick and a couple of others bringing our kit to us!), no masseurs and only a handful of us riding, but it should be an amazing experience anyway.

The idea is that I will do this ride so that I feel that everyone who has sponsored me has had their money’s worth!! But the plan is still to do the London to Paris in 2022 so I will continue to train over the winter (ok perhaps not quite as much 🤣) and into next year and will hopefully be well enough to complete the ride! Obviously, I never know what will happen with my myeloma, but our hope is that it will keep its distance for a good couple of years post transplant – at least!!! If anyone would like to help my motivation and sponsor me, the page is http://www.JustGiving.com/londontoparis50kb450.

Alongside all of this, we continue to work on our home. We’ve finished the garden project now, but are still working on our hall, stairs and landing. A big project, not helped by the trade being so busy at the moment. I really just want it finished now but it’s going to be a few months yet as we need to do the woodwork for about 8 doors, not to mention everything else. Easy if you aren’t doing a million other things at the same time!

So actually, as I write this, perhaps there isn’t so much of the bad or the ugly. It just feels like it at times! I’m very excited to be going and visiting two of my oldest school friends tonight! With covid I haven’t seen them in person for over 18 months and I can’t wait for a big hug!! We’ve all done tests to make sure we’re super safe and it’s going to be soooooo nice! So perhaps there’s lots to be grateful for!! Let’s go with that!

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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