The frustration of thinking about jobs – when you have myeloma

So it’s come to that time where I know I need to be looking for a new role in a new charity. I do really love the work mine does, but it’s no longer the right fit for me (take that as you see fit!)

It’s not that easy though. When I first took in the job I felt a strong ‘imposter syndrome’ and felt like I was doing a job I wasn’t good enough for and more than that, I was petrified of relapsing and them feeling I’d wasted valuable charity resources by applying. 30 months on and I’m proud to acknowledge that I’m pretty good at what I do. I work really hard, come up with great ideas and have hit targets in a difficult climate. Within my current charity they know what I do (even if not always recognised) and I wouldn’t feel bad now if something happened with my health to change the way I could work. I’ve given my all.

But! That’s not so easy if I choose to move elsewhere. If I relapse in a new charity I’ve let them down. But at the same time, I can’t stay where I am ‘just in case’. If I hadn’t taken this job 2 1/2 years ago, I’d never have had the amazing opportunity that I have had. But my health condition definitely gets in the way of me progressing where I am because I won’t work more than four days and they don’t want more senior roles to do less than five. I can’t do that. It’s just too much for me. I need that day to physically and mentally regroup and it helps me to work more effectively on the four, 10-11 hour days that I often do. It feels very short-sighted of them but what can you do. They won’t 100% say that’s why I can’t progress – after all, surely that would be discrimination, but it was clear from the start of this process that was the case. Despite many within the organisation thinking I was capable of a promotion, they have turned me down.

So, I have to think of what’s next. Where do I go and when. I don’t want to jump ship but I do want to go somewhere where I can be recognised and rewarded for doing a good job. Somewhere where they WANT to help me to develop and progress. And somewhere that doesn’t view me only doing four days as a limitation but as a benefit to them.

I actually got offered a role a couple of weeks ago. So much more money. But not right for me so I turned it down. I need and want to be happy in my role as fundraising is hard at the best of times.

I’m not wanting this to sound like a ‘Woe is me’ post, but it’s things like this that make decisions in the life of a myeloma (insert any long term illness!) patient hard. I’m relatively fit and healthy but it continues to affect all sorts of aspects of my life. And probably always will do.

Anyway, as an old friend of mine used to say (RIP Tom), onwards and upwards! Hopefully once I get this resolved their loss will be mine (and another charity’s) gain!!

The Last Year of my Forties!

Well I thought I would welcome in 2024 by acknowledging that it is the last year of my forties. For some that is something they look to with the feeling of becoming middle-aged, something they hate or something that they don’t want to face into. For me, it is actually something to really celebrate!

When I was diagnosed back in 2009, nearly fifteen years ago, our world was turned upside down. Everything that we read suggested that I’d be lucky to get 2-5 years, perhaps 3-7 if you took the more up-to-date figures. I wasn’t likely to reach my 40th birthday let alone my 50th birthday, didn’t know if I’d get to see the kids go to secondary school, and just couldn’t envisage that our lives had any really happiness left in them. I’d planned my funeral songs, written letters to Nick and the kids and honestly believed that the worst was on its way.

So now, as I’m about to turn 49 next week, I feel like my life has been a real blessing for the main part. I am so lucky that I have seen the kids get through school (Sam finishes his A-Level’s this year and turns 18!). I have seen them both grow into amazing young adults who are now starting to find their way into the world on their terms. I have had more than ten years with Nick that I thought I wouldn’t have and hope to have many more. I have seen my friends and family’s children grow up. I have travelled to places that I never thought I would. I am able to work pretty much full time, cycle 30-100 miles a week plus, and still feel ok at the end of it (most of the time!)

Now don’t get me wrong. I hate the fact that I have myeloma. I hate the fact that we can’t make a decision easily for the fear of when I may relapse and have to change my treatment. I hate the fact I get nervous about ALL life choices as I don’t know whether I’ll be fit and healthy for 1 year or 20 years. Should I be paying into a pension now in case they DO find a cure in the next 5-10 years or do we use that money to enjoy life and make memories in case they don’t find a cure and my next treatment doesn’t work? Should we go on the holiday of a lifetime with the kids now while I am still able to, or do we risk waiting till they’ll enjoy it more, knowing that we may lose the opportunity? Do I move jobs for career progression, or stay just in case I relapse so that I don’t let anyone down?

But I still feel lucky….most of the time.

You all know if you’ve been following my blog that I’m still on treatment. I’ve now been on daratumumab for the past 4 years – it’s an immunotherapy treatment that I have each month. So each month I get tested to see if my myeloma is still in remission. You may also know that my numbers have a habit of working a bit like a saw…..up, down, up down. It can be hard not to let that affect my mood and 9 times out of 10, it doesn’t affect me these days. I’ve had too many years of the yo-yo effect. This month they went up again to the highest since my last Stem Cell Transplant and are now at 10.7…but next month they’ll probably drop again.

I don’t really know what it means. My consultant has consistently said that unless there is a big jump, he’s not worried. But my newer consultant who I seem to be having all my updates with, seems a little less convinced that it’s not something to worry about. I still think I’ve got some time before things change but who knows! I got cross this time when they went up again!

So, it’s made me determined that I want to achieve my fundraising goal….that I AM going to reach quarter of a million pounds and hopefully that I’ll reach that by the end of my 50th year. That gives me a maximum of two years. Once I reach that I’ve decided that I will change direction and try to do more patient support and campaigning and move away from fundraising. Now I know that you’ve heard that before but I genuinely mean it this time. #QuarterOfAMillionPoundsForMyelomaUK. How amazing would that be?

I’ve got a couple of things already planned, and if you’re reading this and want to help that would be great! So below are my ideas!

1. Loch Ness Tape – Nick and I are cycling 66 miles around the Loch Ness in April. Now I know I have done London to Paris, but Nick hasn’t ever cycled before. I have blackmailed him into cycling by promising that if he trains and rides this event, that I will drive him round Scottish whisky distilleries for 3 days afterwards! If you would like to sponsor him, please click here!

2. 2024 Auction – I plan to do a new auction that will take place in October/November in time for Christmas. So I’m looking for auction prizes for that. Whether it is a voucher, an item, a painting, an activity…anything is welcome. I’m hoping to raise at least £5,000 but can only do this by having lots of fabulous prizes!

3. Inspiring Friends/ Family to do Challenges – you’ll probably know that this was the core of my #50KB450 campaign but I think this is the only way I’ll get to to my target. So if you fancy holding an event/ taking part in a challenge or supporting, I’d be hugely grateful!

4. Charity of the Year Partnerships – if you work for a company that chooses a Charity of the Year, could you persuade them to choose Myeloma UK for 2025? Every penny they raised would then contribute to my fundraising total.

5. Donations – if your company can’t do a Charity of the Year partnership, but want to support me, they can make a donation here at my NEW #QuarterOfAMillionPoundsForMUK JustGiving page.

Of course if you’ve got ideas of your own that would be fabulous too 🙂 Let’s bring on 50 with a bang!

Merry Christmas for 2023

It’s a bit late this year but love Nick that he has still done our newsletter despite really not ‘feeling it’.

It’s definitely been a strange year, especially the end of it, and I can’t say I’ll be too sad when it comes to an end. But like so many others, the sadness of having lost a parent will still be there even once we roll into 2024.

So, enjoy those that are still with you, and we wish you all the best for 2024.

The Gascoyne Christmas Newsletter 2023 by Nick!

Before we get into the irreverent and mildly sarcastic annual newsletter, I will take some lines to remember Mum, who passed away unexpectedly on the morning of 25^th August this year. Her passing has left a huge Joy shaped hole and we miss her every day, but as I said when I spoke at her funeral let’s remember the good stuff. I am lucky that she was with me for 48 years, and although I want it to be far more, I remind myself it could have been fewer and I think to the positive memories we have of time spent with her. 

I remember the last time she visited us at the house for a drink and play pool (she potted the black to win the match!) and how much fun she had. I remember how she loved getting photos and messages from Rebecca when she visited Barcelona with her friend and how excited she was for Rebecca’s’ trip to Australia. I remember Mum spending hours with Debs in the garden to get it looking good and advising the best plants for the right spots. I remember holidays, games, playing cards, being reprimanded and put in my place when it needed to happen. And I remember how she (surprisingly) found these annual musings most amusing, and I note to myself with sad reflection that for the first time since I started writing these, Mum will not laugh, will not call me to say how funny she found it. Miss you Mum…

So now we can get on with the newsletter in a way that usually made mum laugh – by being a bit cheeky and celebrating my inner misery at having to repeat this task for the 14^th consecutive year, so buckle up for 2 pages of levity and magic because as I have said before, if I gotta write it, you gotta read it.

So let us begin with the brave and inspirational Debbles who continues to demonstrate the skills of a timelord by managing to work a full-time job, cycle 50-100 miles a week, run a household (although the cleaner and 2 gardeners do help a bit with this) and raise money for Myeloma UK – being well on her way toward the magical quarter of a million target. Let’s just pause for a moment and recognise that amount for an independent fundraiser and let some of that glow reflect back on each of you who have sponsored her challenges, bought tickers, attended events, provided prizes and just generally given support over that last 12+ years. We genuinely appreciate all your help – you are fab.

And as if this was not enough, Deb has demonstrated the most unexpected of skills as she has finally persuaded yours truly onto a road bike and I am signed up for two 100km rides in February and April next year. Now for the those of you currently imagining me in full lycra – hahahaha and I hope you can get rid of that taste of bile in the back of your throat in time for Christmas. Deb and I will tackle the Loch Ness Attack at the end of April, so get your hands back in your pockets as we call upon you yet again for sponsorship, but mostly for me. And if you don’t cough up, I know where you live – and a lycra clad Nick will be wobbling his way to your door (green vomit emoji).

Away from my bicycle exploits I started a new job in January and have enjoyed the first year, and my whisky rabbit holing continues unabated and Dad and I recently visited the only Derbyshire distillery when we went to White Peak for a tour and some general shenanigans around his old stomping grounds – great fun. 

A few weeks ago, Deb and I spent a few days in Norway with family – big shout out to Vince and Sarah who were thoughtful and generous hosts – and had a great time. We were lucky with the weather, enjoyed some wonderful day trips to the coast, the mountains, a modest Christmas market and the fjords, and ate very well indeed. Oh and Sarah taught me how to knit – fair to say I am not a natural, but God loves a trier (so he/she doesn’t like me very much).

And earlier in the year we have a big family holiday to France with Rebecca, Sam, Ju and Amy – plus Marley. 2 cars allowed us to bring back additional booze (all legal and above board of course).

Rebecca has had a very eventful year, culminating in a move to the other side of the globe to spend time with family in Perth and Adelaide. Another shout out to Kat, Mikey, Finlay and Bee who invited Bex into their home for 8 weeks and to Jo, Ben and their girls who have welcomed her for Christmas and a few months in 2024. Thanks for looking after our baby and send her home safely at the end of her trip (with a couple bottles of the finest Tasmanian whisky!). I miss her, but she seems to be really enjoying the experience and is starting to suggest she might even strike out and travel – so watch this space. She will return to us in 2024 for the next chapter- we hope!

Before she got as far away from us as she possibly could, she smashed her A-levels and achieved more than her predicted grades after some considerable effort. She passed her driving test at the start of the year, worked long hours at the café and the golf club to earn readies for her travels and had a lovely trip to Barcelona with her friends. Next year she will be 20 – how fast does time go??

Next up is wunderkind who has had an eventful and successful 12 months. A year and a half in and he and Juliet are going strong and he very kindly shares table clearing, washing machine filling and emptying and dog walking duties with her – he is a very kind chap. More than two thirds through his A-level years and already with an A in maths under his belt, he is set to gather some strong results that will set him up for the next part of his journey. Sam has his heart set on a degree Apprenticeship for Quantity Surveying and is currently going through the application process – the future looks bright…or so he tells us.

And so there we are – another year done and out thoughts turn to 2024, but first let us wish you all a Merry Christmas and thank you for your love and support during a tough 2023 – it means a lot to us. And here’s to a great 2024.

With much love from us all

Nick, Deb, Rebecca, Sam & Marley (no mention of him again this year….anyone would think I don’t like him)