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!!

Loch Ness Etape 2024

Well, after a turbulent month, I am delighted to say that Nick and I completed the 66 miles (100km) around the Loch Ness by completing the Loch Ness Etape alongside 6,000 other riders!

I’m not going to lie. It was NOT as easy as I thought it would be. It was definitely hillier than I was led to believe and the 5 mile hill stretch (called King of the Mountain) was not any easier than I’d been told….it was a total killer. To the point that I had to get off just before the top of the first hill and walk – gutted! But I am so proud of Nick who completed it without stopping – he has become such a strong cyclist in the last 4 months and whilst he might not admit it to most, has even started to like what cycling brings to his/ our life!

We did the whole event in 5 hours and 19 minutes which we’re both pretty proud of. It’s been a turbulent year for a number of reasons, and training definitely wasn’t as easy to fit in as we’d hoped with me being regularly poorly, rubbish weather (cold, wind AND rain) and work getting in the way. Just as importantly, we have raised to date, £1,800 towards my #QuarterofaMillion for Myeloma UK which we’re really proud of – if you have sponsored us, thank you so much! I know I’m always asking for help, but it makes such a difference and we do appreciate every donation that is made. If you haven’t sponsored yet, it’s not too late if you click here and honestly, we don’t mind if it’s only a couple of pounds. It all adds up!

What I’m really pleased about though is like I said, Nick has decided that he’d like to keep doing some of the cycling. It’s all about a balance, but I think he realises that we’re not getting any younger and that we need to be a bit fitter. And while I continue to link the cycling to whisky tours (next stop Japan??), I seem to be manipulating persuading him quite well 🤪.j

We’ve got a couple more days to enjoy Scotland and it is a much needed break for both of us now that the ride is complete. There are a few distilleries booked in for Nick and I’m hoping to maybe get out on the bike one more time up here if I can find a nice flat route in Scotland ;-).

Then it’s back to face into the reality of work and all that entails.

Thank you again to everyone for your support – it means the world!

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!