Hope... and where to find it

Why does it take somebody I love being desperately ill to inspire me to start blogging? Here I am, third time unlucky and this time I’m finally putting pen to paper. Digitally anyway. 

I am an eternal optimist. I always look for the good, I can always see the light at the end of the tunnel; it’s always me who says ‘keep going, we’ll get there, things will get better’, but I have to say I’m struggling at the moment.  

Last summer my dad died unexpectedly. He had vascular dementia, but even in his increasingly confused state, he always knew me and my mum. Losing him so suddenly was heartbreaking; it changed my world. It also came just three months after my beloved father in law, Bill, was given a terminal lung cancer diagnosis. He was given 18-24 months; he had just nine. 

We lost Bill at the end of January this year. We’re a close family, we all sat around his bed re-living many happy memories as he slowly slipped away, hopefully comforting him in his final hours, being united in our grief. As my sister in law, Jayne, cried those deep cries of grief from the pit of her stomach whilst clutching onto her mum, I could completely relate; it was only seven months since I’d done exactly the same.  Many people suggested we got in touch with the charity Cruse Bereavement Care as we struggled to come to terms with our second loss. 

So just a few months later when Jayne, started with headaches and ‘fuzziness’, we put it down to the obvious grief she was suffering, but also stress given she’d just moved house and landed a fantastic promotion. The headaches and dizziness got worse, her sight declined rapidly and we no longer believed in the ‘ear infection’ she had been fobbed off with. 

After repeated, useless, trips to the doctors, one day she had numbness down her arm.  Her husband took her to the hospital where an MRI and CT scan confirmed a malignant brain tumour. Jayne needed surgery and an intensive course of chemotherapy and radiotherapy.  

For a self-proclaimed ‘eternal optimist’ this felt like quite a blow. We’d lost two dads (two grandads) within the last year, what more could my lovely family go through? It felt pretty desperate; we truly had no hope. 

So where did I turn? To charities of course! Via the wonders of social media, I put out a few tweets asking for advice or direction – looking for the one thing we’d all lost: Hope. It turns out there is a plethora of support, help, advice and information out there – you just need to ask!

Of course, I’ve been here before. When my dad first got his dementia diagnosis, I read the Alzheimer’s Society website from start to finish, learning all I could about the dreadful disease. It helped me prepare for what lay ahead, I learnt what to expect and I believe it helped me support him better because I understood what was happening.

When Bill was diagnosed with lung cancer, I turned to the Roy Castle Lung Cancer Foundation, and the many articles and leaflets from Macmillan Cancer Support were brilliant for all of us to read and digest. 

As a result of my social media requests asking for help and information for a glioblastoma diagnosis, the wonderful, small charity Brainstrust sent us a Brain Box, filled with information about brain cancer, treatments, fatigue (which absolutely knocks Jayne off her feet) and the most helpful resource ‘How to have a difficult conversation’. Everything is written by people with first hand experience. They also have a 24/7 helpline, with the simple statement “we know about those 2am moments”. I’ve lost count of how many texts I’ve received at 2am when she lies awake in bed. It was so comforting to read that they just get it.  They also hold regular meet ups in Hull where we live. We’ll get to meet other people going through the same thing.

The Brain Tumour Charity is putting us in touch with other people with the same kind of tumour who are doing better than expected. This will give us the thing we’re really searching for – hope. They showed us an interview with someone who has defied all the odds. It filled us with hope. They’ve also given us so much information on clinical trials. Again, we’ve got hope. When you reach rock bottom, hope is what will get you through. 

I’ve worked with and for charities for over ten years, firstly as a volunteer fundraiser before moving into paid roles. I’m now fortunate to run Nisa Retail’s charitable foundation, Making a Difference Locally, as my day job, and in my spare time, I’m proud to Chair the Institute of Fundraising Yorkshire Regional Group.

I live and breathe charities, but even I have been totally overwhelmed by all of the information that’s out there, and completely humbled by people’s kindness and willingness to help, complete strangers getting in touch to offer advice and kind words (don’t even get me started on the wonders of social media, that’s a topic all on it’s own!).  

Charities exist to help. In 2016 The Guardian told us that 98% of UK households access a charitable service and charities increasingly address communities’ basic needs. 

I’ve had many desperate moments in the last 14 months. Each time I’ve turned to charities for help and support; they’ve never once let me down.

To quote Daniel Fluskey from the Institute of Fundraising in a fabulous presentation he gave to Yorkshire fundraisers, “Fundraisers are saving lives”. Indeed they are! Raising vital funds for charities to not only deliver their now essential services, but also to give us hope.

I’m proud to belong to this profession and work in this sector. To my fellow fundraisers and everybody volunteering and working in the charity sector:

THANK YOU! You’re doing a tremendous job and you make a difference every day; please keep doing what you’re doing.