You don’t have to be ‘lonely with leukaemia’ says Leukaemia Care Cancer Charity

Leukaemia Care would like to highlight the inspiring stories of patients who have accessed our services and found companionship in its one-to-one buddy scheme. Cancer is lonely enough but the Covid 19 pandemic played a large part in the isolation that some patients felt, particularly those who live alone.

Despite being 200 miles apart in distance, John in Trearddur Bay, Anglesey and Ian in Billingham, Stockton on Tees, the two strangers formed a unique bond over a telephone call over their cancer journey which has developed into a lovely friendship which has helped both come to terms with their condition.

John, who has chronic lymphocytic leukaemia (CLL), one of the most common types of leukaemia which affects the white blood cells. “20 years ago I was 50 and a keen sailor, and should have been at the peak of my fitness but suddenly I felt lousy, I had a flu that just wouldn’t go away, so I went to the doctors and they took blood tests. On Monday he phoned me back and told me I had cancer. The children and Anne, my wife, were waiting for an evening meal, so I went in and blurted it out. By Christmas they diagnosed me with CLL and I was put on watch and waited and have been waiting for something to happen for 20 years. I am about to celebrate my 70th birthday with all my grandchildren and children. I was told when I was 53 I was told I wouldn’t make it to my 60th birthday. Boy did I prove them wrong- I’ve just turned 70.”

“We have made the best of it, you do get fed up from time to time as it stops you doing certain things but Leukaemia Care has been absolutely fantastic. When I phoned them up initially, they were a great support and I wanted to help give back. By coincidence, the buddy scheme was about to start so I asked if I could help. When someone is recently diagnosed with leukaemia, they want someone to phone up and say I have had it for 17, years, as I did at the time, so we did the training and now I now speak to Ian once a month and we have an hours chat and we know each other’s families and we cheer each other up. It’s not just good for the buddy but it is good for the person carrying out the service too. I don’t help them, we help each other. I feel it has been incredibly successful.

“Cancer patients must have found the last two and a half years very hard. Having leukaemia and being on the watch and wait has its moments and frustrations and drags on, through lockdown it was worse. Like other leukaemia sufferers I am full of anxiety every time I go outside and meet people, but I am slowly opening my world. My life has been full of anxiety. I can’t go to the shops but thank goodness we can click a button and it arrives on the doorstep. We need to find a new normal. In some ways, the first one was better than the second one, as the rest of the world has moved on, covid is not on their radar anymore, they don’t see the danger. But in my case, I have my regular bloods and my consultant is still saying stay away from people. For me who is very social and enjoys sailing and travelling around the country I have been finding it hard, that the rest of the world is back in top gear, and I am still streaming away in second, but we are now two and a half years into it and we are opening our doors, We have allowed our brother and I into the house for the first time. We are trying to slowly get normality back in our lives and play catch up with the rest of the world. There are still some of us on medical instruction who are not mixing and some with leukaemia are particularly hesitant to go out there, but they must.

“I feel for anyone with leukaemia who has lived alone. I had the best buddy in the world called Anne who is my wife, who has been a stalwart. If you are lucky enough to have a spouse then they are the unsung heroes because they have supported their partners through leukaemia and they are people who deserve a medal as they also have a cross to bear, being that extra support mechanism, especially during the pandemic.”

There are 26 new cases of leukaemia diagnosed in the UK every day, equating to approximately 9,500 new cases each year. For those recently diagnosed or living with leukaemia, a figure growing daily, life can at times feel very isolated, yet Leukaemia Care is here to support those feeling alone.

Leukaemia Care has a buddy scheme coordinator called Kay Drew who matches up like-minded people with the same condition in the hope they form a bond. Hundreds of people, across the country, have found a companion to share their cancer journey with since the programme began. Indeed, her match rates are so successful she has earned the moniker of ‘Cilla Black of the buddy world’.

“The role of a buddy is to support people who have had no one to speak to before. Many people are being strong for families and have found it difficult to express their feelings. They might be undergoing chemotherapy and want someone to talk to on a bad day, who can relate. Everyone needs some support and our buddy system can help with that.”

The matching process is quite involved – first Kay looks for people who have the same diagnosis and then those with similar hobbies and interests. She also looks at age as well as other factors to determine if she believes there will be a good pairing. “The buddy group will arrange contact via the telephone and the most important thing is the ability to listen and empathise.

Among her success stories is the incredible friendship of John Price, a buddy who paired up with Ian Hayley at the start of the scheme.

Find out more about Leukaemia Care’s buddy system here