Mike K's story
In February 2023, Mike was diagnosed with leukaemia and went through two gruelling rounds of chemotherapy and a bone marrow transplant, as well as suffering with two sepsis infections and a serious fall in hospital. As he could no longer work, Mike’s family were haemorrhaging money and needed support…
“I hadn’t even felt that ill when I was diagnosed with leukaemia, so it came out of the blue. I had a cough, I was getting more tired and out of breath, but I had no idea it was something so serious. I’d been working up until 13th February and called the GP to get checked on 14th. The GP thought it was a viral infection and was dismissing me, saying to wait six weeks and see how I felt, but as my symptoms persisted, we went to A&E.
“At first, they thought it was heart problems, but I was tested and found out it was leukaemia. I went from not having any inkling I was seriously ill to being admitted straight into the oncology department at Hull hospital. My consultant said it was a good job we went to A&E as I wouldn’t have survived the six weeks the GP had said to wait.
“My consultant offered me different treatment options to ‘kick it down the road as far as we could’. I was mostly in hospital from February to September and then, in August, I had a bone marrow transplant. It was a whirlwind. I was usually always working and around my four kids and then, suddenly, I was in hospital, constantly having treatment. I didn’t really have time to process it. We had to get the kids to travel up from Binbrook, Lincolnshire, to Grimsby to tell them about the leukaemia before I started treatment as they weren’t allowed on the ward.
“I knew about Ben so I made the call to find out how they could support us and how to process everything we needed. Ben came back to me so quickly; they were really good. I came home for a couple of days before I started the first round of chemotherapy. We were very busy getting our affairs sorted.
“My Case Manager at Ben knew things we didn’t even know we needed and hadn’t thought about.
I’m a mechanic and the self-employed part of my income stopped completely as I obviously couldn’t work, but our Case Manager told us what benefits we could claim, including PIP. It made a real difference; we didn’t have a clue and we were haemorrhaging money. We were only just making it match before, so we would have really struggled otherwise. Our Case Manager also supported us in applying for a blue badge which we hadn’t thought about but have been relying on completely ever since.
“My Case Manager was in touch every few weeks at different stages, always working around us and how we were feeling. Some days I was fine and other days I was on morphine so couldn’t deal with anything. She pointed us through each stage, telling us what benefits would stop when and what needed to happen next. I managed to get statutory sick pay from an additional part-time job for a while, but I don’t know what we would have done without this support. We would have been lost.
“At one point, I came off the chemotherapy and then had sepsis. I was 24 hours from death - it was touch and go over 48 hours. I had a ‘Do not resuscitate’ (DNR) order on me which was then reversed by my consultant.
“In July, I made it out of hospital to see the children’s school leaving events and plays. Then, in August, I went back into hospital to have my bone marrow transplant and my Case Manager had arranged for the kids to go to the Ferrari day event at Silverstone which was amazing. They had a summer of being stuck at home with my mum as she couldn’t go far while my partner, Donna, and I were in the hospital. I was on the phone with them while they were at Silverstone and they were in their element!
“Then, unfortunately, I ended up with sepsis for a second time, followed by a serious fall in hospital! Yet, against all the odds, I came out of hospital later in September. I wasn’t doing great; I was struggling to walk and I had wounds that Donna was dressing for me every day. But, by Christmas, it was a turning point for us as a family. Ben provided us with £50 for each of the kids so we could get them presents and they also funded our Christmas dinner which was amazing. I had started to perk up, so it was a fantastic Christmas. Things started to feel more normal.
“Ben gave us support we didn’t know we needed. The knowledge of how to get the benefits we needed and informing us about things like applying for council tax reductions was priceless. We couldn’t process this on top of everything else going on. They were on the ball with the timings of everything, such as when we were coming up to a deadline, or telling us when things would kick in. They gave us the guidance we needed so we didn’t have to firefight. Everything was in place when we needed it.
“After the second round of chemotherapy, I couldn’t walk far, and this was when the blue badge became vital. Things had gotten a lot harder. The speed at which Ben intervened and pointed us to the right places was invaluable. They also supported us with money for fuel as we were going back and forth to hospital three times a week which was a lot of mileage. Without Ben’s support, we would have struggled a lot more. We wouldn’t have known where to go and what to do. It would have made life a lot harder when we were in so much trouble already.
“Things are OK now. The leukaemia is in remission but it’s still a rollercoaster as I’m having tests done because my immune system is compromised. It will be at least two years before I will be back to normal immunity and blood levels. It's a long road. After a bone marrow transplant, you start at day 0. It’s like starting out as a baby again as everything is wiped from your bone marrow and needs to be rebuilt. So, I need all the vaccines that a baby has and, for around two years, I’ll be on a diet like a pregnant woman and need to steer clear of crowds. I’m also on steroids quite a lot so I need to be much more careful.
“If everything goes to plan, we should be back to normality for a while. It could be 10-15 years before things flare up again and I relapse, but it can be longer. If I relapse, I could go through it all again - I’m young enough. We’ve got over the bumps so far, but whatever time we get together is such a bonus. It's given us time.
“For anyone struggling, I would say make the call and ask if Ben can help. Also, get the ball rolling earlier rather than later. For us, it was a big help to know what support would be coming our way. The longer you wait to make the call, the harder it will be to sort out. Whether you’re struggling financially or emotionally, just make the call and see how Ben can help.”
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