15 Jan 2024

Ian and Mandi’s gift of “leaving someone else with life”

“I want other people to benefit from research like I did. I wouldn’t be here today without it.” 

Ian’s symptoms started in the spring of 2019 with what he thought were abscesses in his mouth. He went to a dentist who put him on antibiotics. Ian was also feeling very tired.

“I was working in the garden over a bank holiday and when I went to go to work the next day I had to go back to bed as I felt so tired,” said Ian, now 61, who lives in Birmingham and was at the time working in a factory assembling machinery. “In the weeks leading up the diagnosis I was also getting back from work and having to sleep as soon as I got home. Then I went to the doctor for a routine blood test and the GP picked up that my white blood cell count was low.”

Something wasn’t right

Ian was referred to the haematology department at Russells Hall Hospital in Dudley where he underwent several weeks of blood tests to try and understand what was wrong with him. It wasn’t until a bone marrow biopsy was finally carried out that the picture became clearer. On May 7th 2019, Ian was diagnosed with acute myeloid leukaemia (AML).

“I knew something wasn’t right but I just thought I was anaemic,” said Ian. “When they told me, it was such a shock I thought they must be talking about someone else. They didn’t have a bed for me so we had to go home and anxiously wait for the phone to ring.”

Wife Mandi, now 57, was at his side. “The nurse and doctor said to me he will be in hospital for quite a while now, and there’s no guarantees as he’s extremely poorly. They said he may not be here at the end of the week but if we start treatment straight away we are hopeful we can turn it round.

“Neither of us knew what leukaemia was. But one nurse said it’s like a liquid cancer, there’s no lump, it can’t be cut out, so that’s why you have to have so much chemotherapy. That helped us understand.”

Initial shock and disbelief

On May 10th Ian started his treatment – the first of three rounds of chemotherapy, with short breaks at home in between. He was also told he would need a stem cell transplant. Neal, Ian’s brother, was tested but unfortunately wasn’t a match, so the search for a suitable donor began.

“After the initial shock and disbelief I just wanted to get on with the treatment,” said Ian. “It was exhausting and painful, I lost my hair and felt sick most of the time, but it went fairly smoothly.”

A factor that really helped the couple was the support of their employer. Mandi and Ian both worked at the same manufacturing company which encouraged Mandi to take her laptop and do her work in sales from the hospital all day. This enabled her to stay with Ian and attend all the doctors’ meetings and updates, rather than having to take unpaid leave.

At the end of August, a donor had been found for Ian’s transplant – a 27-year-old man from America. Having been sent home to rest and recover, Ian was admitted to Queen Elizabeth hospital on 15th October for the most gruelling part of his treatment. Ahead of his stem cell transplant he had to receive huge doses of chemotherapy and other drugs to wipe out his own immune system and prepare him for the donor cells.

“Some of this treatment and the side effects were very unpleasant,” said Ian. “But knowing I was having my stem cell transplant imminently kept my spirits up.”

Positive and determined

Fortunately Ian’s transplant went well and he was sent home on 4th November. In February 2020 he contracted sepsis and had to be readmitted to hospital. He also suffered from shingles, a gut infection, arthritis, and Graft vs Host disease. But through it all he remained positive and determined to come out the other side.

“The professor said the first 100 days afterward the transplant were critical,” said Ian, “so that was a particularly anxious time.

“Overall, there were times when it gets you on the ropes mentally and physically, times when you feel like pulling out. But to be quite honest I felt lucky all the way through because I was diagnosed early, responded well to treatment, had a 100% match donor and the care I got was excellent.”

Ian is now in remission and back to enjoying life. He was off work for two years but eventually returned to complete a final year before taking early retirement after 27 years with the company. Mandi also chose to retire at the same time after 30 years in the business.

Fundraising for leukaemia research

The company held a big charity day during Ian’s treatment and raised over £1000 for leukaemia research. “They were so supportive, which meant I knew Mandi was getting the help she needed and I could just concentrate on my treatment,” said Ian. “Our families and friends were also fantastic at supporting us both throughout. Being positive was really important to me – and doing what I was told! Once you accept it, you can get on with the business of dealing with it. I just handed myself over to the medical staff and let them get on with it.”

Mandi and Ian are now enjoying life to the full and spending precious time together. They’ve also decided to show their commitment to research into kinder, more effective treatments for leukaemia by donating a generous gift to Leukaemia UK. They are using the charity’s Free Wills service to pledge 1% from each of their estates

Leaving a gift to support research

“To leave a gift to Leukaemia UK in your Will, you’re leaving someone else with life,” said Mandi. “We didn’t understand what leukaemia was, like most people. A lot of people think it’s either an old or young people’s disease, but it can affect anyone. People need to be made more aware of the symptoms. If you feel unusually tired and are getting lots of infections you need to get it checked out. Our small gift will help get more information out and more research that will help save more lives.”

“It has obviously changed my outlook on life,” said Ian. “I was put on a trial drug and I didn’t know whether I got the real thing or a placebo. But I’m pretty sure it was the actual drug as I responded so well. I want other people to benefit from research like I did. I wouldn’t be here today without it. One of the nurses said she’d been in the medical profession for 25 years and when she started they didn’t do transplants for people over 40. Now they’re doing them for people in their 80s. The research has come such a long way. Leaving a gift in our Will will further this research which we are proud to be part of.”

Want to read more about others who have been diagnosed with leukaemia? Read Joel’s story and his recovery from sepsis.

Find out more about leaving a gift in your Will to Leukaemia UK.

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