Time for a quick update

Wow where has this year gone. I can’t believe we’re about to hit April and yet I feel like we’ve only just come out of Christmas! It’s mad.

Things are all going relatively well in the Gascoyne household. We’ve continued (with the exception of the kids just after Christmas) to avoid covid – i probably shouldn’t jinx it by saying that but Nick seems to have avoided it despite being at work with people who’ve had it, and so do I….so far!

That said, this last week has reminded me why we’ve tried to be careful. All of us, one by one, ended up with a stinking cold. For most of the family it lasted 2-3 day, for Nick a bit longer, but I’ve had it a week now! And been laid up for a lot of that, or shattered by it. It’s partly my own fault. I kept working as it was an important week for Brain Tumour Research and possibly, just as I was recovering, I did myself no favours by driving around the country. My punishment was the weekend laid up in bed. Not fun for anyone. So my promise to myself this week is to be sensible. Hmmm, we’ll see 🤣🤣.

I’ve also found myself quite down the last couple of days. We lost a neighbour on Saturday to cancer. It all happened so fast as he was fine just before Christmas. A reminder of how cruel life can be. Then I also found out about a supporter who had passed leaving behind a husband and two young children. A little too close to home for me, and a reminder again, of how lucky Nick and I have been with my diagnosis. The husband reminds me a lot of Nick, so it has felt closer than perhaps it might otherwise have done. It’s a tough job when we have to deal with people passing away. I still love it, but just wish at times we didn’t have to do that side of it. But I suppose that is exactly why we are needed.

In general though, things are good. My numbers seem to be stable still, I feel lucky to be able to work, to keep cycling (when I’m not in bed ill or working!!), to keep fundraising and basically to be here! With all that’s going on in the world, sometimes it’s good to remind ourselves about the positive stuff we have in our lives!

Right it’s 1am, so I really must try and sleep. Flipping restless arms and legs. My only real complaint at the moment!

Posted in Myeloma | 1 Comment

One Year of cycling for Myeloma UK

So it was a year ago today that I took delivery of my new bike. It was the first bike I had owned since I was at university and had been purchased after I had signed up for the London to Paris bike ride for Myeloma UK – just 4 months after having my 2nd stem cell transplant. When I think back, I think I must have been slightly delusional at the time!! I’m sure Nick thought so, although he would never have said! I’m genuinely not sure that he ever thought I’d go through with it all!

I think even signing up to it was a bit crazy. I was still very much recovering from my transplant, and still very much lacking in energy. I didn’t even know if the transplant had worked (it’s looking pretty good 16 months on thankfully!). So I didn’t know if I’d be well enough to ride at all, let alone 308 miles in 4 days.

But now a year on, cycling really has become a part of my life, and I’m so grateful for it as a means of keeping me on top of my mental health too. Some of you will know that the actual 2021 London to Paris was postponed till September 2022, but that I managed to do it in the UK thanks to my amazing cycling friends!! I was super proud of what I achieved. And so grateful for cycling taking over my life, at a time where I had to give up my netball due to weak bones and bad backs (I blame the drugs 😞)

I was quite worried about cycling over the winter as it was something I’d not done. For those of you who don’t know, myeloma lowers your immune system, so I always try to be careful in the winter to avoid illnesses and putting myself at risk. Recovering is always harder for me than for a healthy person so better not to get into that situation in the first place. So cycling in the cold and rain was an unnerving process! Thankfully while it’s been cold, it hasn’t been wet very often and, touch wood, I’ve avoided getting poorly! Phew!

So I’m now 7 months away from the 2022 London to Paris. My health seems to be fairly stable and I’m keeping those fingers crossed it stays that way because I AM going to Paris. I’ve worked too hard not to do this!

I also need my health to continue to be strong because I’m now working (almost) full time!! I’ve got a role as the Community Fundraiser for Brain Tumour Research and I absolutely love my work. I feel so lucky that for the first time in my life, I look forward to getting up and working, I rarely want to stop in the evenings, and I even miss it a bit at the weekends! That from the lady who used to manage to moan about any job she ever did. I feel like I’ve finally found my perfect job! I’m so lucky as I have an amazing boss who supports me, develops me, but mainly, who seems to trust me. I’m not sure I’ve ever really had that before. And for the first time ever, I feel confident that I’m pretty ok at what I do.

Working is probably the main reason I haven’t written on here for ages. I’m soooo busy and what with cycling at weekends, it’s hard to fit it all in. I think also, being well always makes me feel like people won’t really want to hear about my boring life! Funnily I was talking to Myeloma UK about early diagnosis the other day and that whole piece on survivor guilt. Something I often struggle with. And writing a blog telling everyone how lucky I am, potentially isn’t helpful. And actually, I’m not sure how much people want to hear about my mundane, day to day life.

Well, the weekend is here, and I’ll be off again on Sunday trying to get my miles up and get fit again for September. I’m pleased that I’m not starting from scratch like last year but I’ve still got a way to go. If you read this, and think it’s something you’d like to join in on, please let me know! I’m doing it with my niece (and 100 odd other Myeloma patients/ consultants/ families/ supporters) and we’d love other people to join in for my #50KB450. I’d really like to get that bit closer to my £50,000 as we’re nearly 80% of the way as we start 2022 (that’s £165,000 in total to date!)

Anyway, I wanted to post today to mark the anniversary of my move into cycling. And to say thank you to everyone who has supported me in my journey – I really am more grateful that you’ll ever realise.

www.justgiving.com/fundraising/londontoparis50KB450

Posted in general, Myeloma | Tagged , , , , , , , | 1 Comment

Merry Christmas 2021

The Gascoyne Christmas Newsletter 2021

Can you Adam and Eve it – it’s the ‘Christmas newsletter’ time again. Time for me to happily reflect on another year for the Gascoynes’ and to bring a sprinkling of festive joy into your lives – let’s do this.

Most of you will be blissfully unaware of the significant preparation that happens before this master craftsman breathes life into these globally recognised and celebrated pieces of writing. As a treat I will give you a glimpse of the fevered work that occurs behind the curtain……. Deb prints last year’s newsletter, I drink a lot of whisky and Deb scribbles some bullet points for the 4 of us as a kind of aide memoir for yours truly. This year she noted 6 things that she had achieved, 6 also for Sam (who lest we forget is a teenage boy child) and 8 things for Rebecca – more on these events later.

For me she noted 3 things…… and one of those was laying a patio……. and my dad did that. An entire year summed up by starting a job, building a pizza oven and my father laying a patio – I truly am an overachiever or epic proportions (which means I also need to lose a lot of weight!). It’s fair to say I will focus mostly on the members of the family who actually do stuff – oh the shame.

Ok, let’s shine the light onto the apple of my eye – my son Samuel Fraser Gascoyne. For context, and to frame whatever I write next, please consider that Sam is a teenage boy alongside the Whitney Flemming quote:

‘I know I am supposed to be preparing my teenagers for life and all, but it’s hard when they already know everything….’

For those of you concerned about Sam’s chronic XBoxitis we have some good and bad news – the good news is that I found a pound coin in the washing machine yesterday. The bad news is everything else to do with screens. Somehow though, when not physically attached to an iphone or said XBox, Sam has managed to do some great things and one, absolute banger of an achievement. He is within spitting distance of finishing his Silver DofE, he worked for a few months as a washer upper at a butchers for 3s6d an hour, he finished playing football for the local team (or rather football finished) and he started playing badminton; he also discovered parties & cider, and he got taller – he is the tallest in the family and has size 12 feet.

In terms of the big achievement, Sam completed his 15b415 fundraising earlier in the year (although his JustGiving is still open if you have any pennies left) and raised close to £9,000 for Myeloma UK. 15 consecutive hours on the XBOX was a highlight for him and 15 hours silence was a highlight for everyone else – and overall he smashed it (I believe that is street talk for doing a jolly good job). A joint recommendation from Deb and school saw him recognised with a British Citizen Youth Award – one of only 26 awarded this year – at the Palace of Westminster in October. It was a genuinely humbling experience to see what these kids had achieved and we were so very proud to see Sam in that group. Unsurprisingly, Sam’s fundraising and award received a lot of local press attention but also some national coverage with the glorious and not at all ‘so right-leaning it might fall over’ GB News. Apparently, all press is good press although that adage is stretched thin when watching the TV equivalent of the daily Mail on steroids!

Whilst we are on the subject of wonderful children let us turn our attention to the first born – how has 2021 been for Rebecca Ella I hear you ask? The Spring and Summer saw her sit and smash her GCSE exams before moving to college to study A-Levels in Biology, Psychology and Media Studies. She flirted with the idea of apprenticeships and work but felt A-Levels were the right path, and so far, so very good. Rebecca is working hard and progressing her studies positively, and loves being at a college where you choose your own outfits, only attend when you have classes and spend hours in Costa nursing a single cup of tea (£2.10 is a lot) whilst working/revising*. Early results are promising and we are impressed with her focus, but this is not the only news this year from Bex…….

With Silver DofE in the bag (well done Rebecca) she is well on course for her Gold, with only one teenie weenie problem – the silver expedition nearly ended her! 4 days of walking with a heavy pack was literally too much for this delicate flower (by flower, I mean nettle) but to her credit she persevered and completed it, but the memories are still fresh and the appetite for a Gold version is somewhat low. To her credit she has continued to work on the other disciplines of the award and has until she is 25 to complete the expedition – so there are at least 7 more newsletters worth of updates to come – woohoo.

Rebecca has also continued to volunteer as a junior Brownie leader, works 12-15 hours a week at the local Italian restaurant and home bakes like a good ‘un. The waitressing work has given her a genuine independence and she has kept the internet clothes shopping business in the West Midlands thriving – I am sure there are hundreds of extra Malaysian sweat shop workers employed thanks to her spending habits (let me know if this joke it too much for a Christmas newsletter as I am testing the tone for next year when I have some funnies around Prince Andrew, Parisian car crashes (one for the oldies),  Vaccinations and micro-chipping and transgenderism to choose from).

Finally for Rebecca, she is also learning to drive so if you live around the Stourbridge area please take extra care on the roads this Christmas as she is planning to get into third gear any time soon and who knows what will happen then!

So that leaves my darling Wife – the best till last – the piece de resistance**, and how can I do justice to her this year? Well, firstly, she’s only gone and got a bloomin’ job! Full time. With a salary. We were just thinking how quiet life had become with myeloma, fundraising, house renovation, my new job, 2 teenagers, a dog, a global pandemic, a big garden, cycling and learning to speak Klingon (this last one is untrue – just checking who had got this far and well done if you have). Adding 39 hours a week working seemed the sensible thing to do and she is now a Community Fundraiser (I think) at Brain Tumour Research and appears to be loving it. More amazingly she still likes her boss – who said you can’t teach an old dog……

As I mention in the ramblings above, Deb has also taken up road cycling. A combination of damage to her body caused by the myeloma and the dangers of playing a contact sport with lots of hot sweaty women (oh, I’ve come over a bit funny) during a pandemic meant that she had to call it quits on netball and the replacement was cycling. As with everything in her life she attacked it with gusto and went from her first ever road bike ride in March to completing a Midlands version of the London to Paris (the original cancelled due to Covid) in September. She persuaded new friends from the wonderful Stourbugs cycling group to accompany her on the 310 mile ride over 4 consecutive days and raised loads more dosh for Myeloma UK. In total she is now 70% of the way to her 50b450 target and has raised £165k in total – simply amazing (and brave… and inspirational…).

Thanks to everyone (you know who you are) who have donated money, time, energy and love over 2021 to get Deb to where she is and inspire Sam to do his thing too, and also of course keep your wallets and purses to hand as there is more to be done in 2022 (including the actual London to Paris later in the year).

So, there we are – another year gone and another newsletter written (another 12 minutes of my life I will not get back). In a tough year we have done loads, achieved some big things (including laying a patio!!) and had some great times, so thanks to all of you who have been with us on this journey and we hope for even bigger and better things in 2022.

With much love from us all

Nick, Deb, Rebecca, Sam & Marley (no mention of him this year….)

Sam’s #15B415: www.justgiving.com/15B415      

Deb’s London to Paris: www.justgiving.com/londontoparis50KB450

*From the Greek Revisio which means talking to your friends for hours and watching Youtube videos about cats

** From the French piece de resistance which means resistant to my piece.

Posted in Myeloma | Leave a comment