Mum-of-two Lucy Dindoyal, 46, from north London says her life turned into a "nightmare" after husband Hedley, 50, was diagnosed with non-Hodgkin lymphoma. Following two unsuccessful courses of chemotherapy, the family of four are on the hunt for a blood stem cell donor – the key to saving Hedley and ensuring Milo, 12, and Jasmine, nine, "have their dad around to watch them grow up and guide them through life". Lucy tells her story.
"Hedley and I met through work when I was 21 and Hedley 25. The minute we met, we just clicked, and we’ve been inseparable ever since. Three words come to mind when I think about his initial diagnosis: shock, disbelief and anger. Hedley had been ill for a couple of years, but the hospital had never got to the bottom of it, then as the pandemic hit, he fell seriously sick – he couldn’t even catch his breath going up the stairs. This was when he was diagnosed with non-Hodgkin lymphoma.
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Lucy and Hedley have two children, Milo, 12, and Jasmine, 9
"It was extremely stressful – we had literally just been thrown into a national lockdown, I was trying to homeschool our kids as well as work, and Hedley was now in the vulnerable group for becoming seriously ill. Although I wasn't alone, it still felt very lonely.
"Hedley went through six rounds of chemo and we were looking forward to celebrating Christmas cancer-free, but on Christmas Eve 2020, I had to call 999 for an ambulance. He had an infection, which had led to life-threatening neutropenic sepsis, but with covid in full swing, we waited a few hours and nothing came, so I drove him to hospital and had to leave him there. Coming home to our kids without him on Christmas Eve was heartbreaking. Fortunately, he was allowed home for a few days, but his health worsened and he needed to go back. I wasn't allowed in but Hedley told me he collapsed as he walked in and needed life-saving antibiotics and blood transfusions.
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Lucy and Hedley have been together for 25 years
"From then, he stayed in hospital for seven weeks, in complete isolation. His cancer had come back and was now more aggressive than ever. This time I really panicked – it felt as if we'd been thrown into another nightmare. We had no idea when, or if, he would be coming home – the last the kids and I had seen of him was him staggering into the hospital. I didn't want this to be our last sight of him.
"After seven long weeks, Hedley started another six months of chemo, but the cancer returned pretty much immediately. It was at this point the consultant told us that our options were limited, and that we were looking at palliative care if the next treatment failed. He told us Hedley wouldn’t survive. I was devastated, this was the worst day of my life. Hedley and I talked about what a happy life he had had, and I promised him I would look after the kids.
"A week later we learned of an alternative treatment, which if it worked, would mean that Hedley might be able to have a stem cell transplant, using donor cells rather than his own. This wasn't straightforward though – the donor needed to be a good match for Hedley, who is a British-born Mauritian – and people from minority ethnic backgrounds have just a 20% chance of finding a matching blood stem cell donor, compared to 69% for northern European backgrounds. This is where we are now – searching for a donor.
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"I had no idea Hedley and I, and the children, could go through this and still be functioning. My family, friends and neighbours have held me up. I wouldn’t have coped and would have gone mad without them, especially when Hedley was in hospital for weeks on end.
Hedley spent seven weeks alone in hospital due to the pandemic
"My two children have been our focus and source of cuddles. They knew Hedley wasn't well, but as well as staying positive, we also try to be honest. We wanted them to know each time Hedley had a relapse so we've always told them, but it has got harder and harder. This has undoubtedly been the most difficult heartbreak of all – knowing the effect it has on them and how much they still need him, but mostly, how they could possibly live without him.
"They've always said, 'Our dad is invincible, he'll be OK,' but deep down I'm sure they have fears and worries which they can't always articulate. I try to keep lines of conversation open with them, but not push too much. Their lives have changed so much – particularly with covid – as they weren't able to go to school and see friends, and there were times when they could only communicate with their dad through facetime for months on end, with no hugs or contact. We tried to keep things as normal as possible, and even managed to watch films together while Hedley was in hospital via FaceTime, setting the iPad on the sofa next to us (you'd often hear one of us say: 'Pass dad over here!').
"All of our lives have changed beyond recognition. We've been shielding for most of the past 18 months, because if Hedley gets covid he'll be really poorly. We've got this far, so we can’t give up now!
"I always knew Hedley was a strong and resilient person, but never quite this much. Our relationship is so much stronger, and I just want him to know what an amazing person he is, how loved he is, and that Milo and Jasmine couldn't ask for a more devoted, loving and funny dad.
"When I try and explain my situation to others, I tell them to imagine being stuck on your own for months, not knowing when or if you were going to go home and see your family, with no fresh air or familiar faces. It's a nightmare for us to see Hedley going through that, and for Hedley to helplessly experience it. Then, just when the nightmare seems to be coming to an end, you get plunged back in. It's scary and lonely, and totally out of your control.
"To find a matching stem cell donor would be the most special gift. It would simply mean everything. For Milo and Jasmine to have their dad watch them grow up and guide them through life would give me so much happiness. We just want to have him by our side to make us laugh, and probably annoy us with his silly jokes! We've been encouraging awareness on social media with the hashtag #HelpSaveHedley, where we discuss the importance of registering with a stem cell agency. We would encourage everyone to register, especially the Mauritian community and those from other ethnic minorities. Signing up with Anthony Nolan or DKMS is so easy – it takes just a few minutes, all you need to do is return a cheek swab by post and you could help save Hedley."
Sign up to become a blood stem cell donor via DKMS, where you can also read Hedley's story, and help raise awareness with the hashtag #HelpSaveHedley.
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