‘Life has been cruel and every time I feel like we’ve got over a day, the next day gets harder’
Family’s struggle during end-of-life care for inspiring dad
A“FIT and healthy” dad-of-four who went to doctors after suffering stomach pain has been told he only has days to live.
Jonathan Nicols, 45, first started experiencing symptoms back in the summer of 2021.
His symptoms seemed to appear out of the blue as he began suffering with stomach aches, fatigue and weight loss.
More than a year on from the problems he found out the tragic news he had leukaemia and his treatment wasn’t working.
At first Jonathan, who is a keen runner, put his sudden symptoms down to the fact he was running 30k a week.
But when his strange symptoms persisted, wife Kimberley urged him to get checked out.
Jonathan visited doctors and had a routine blood test.
Medics wanted him back for further checks just to be safe which led to a phone call letting him know that doctors wanted to see him at a hospital in Liverpool to discuss his results.
His 47-year-old wife said: “He went in there really positive thinking everything was fine to be fine.
“It was going to be nothing.
“He was told a consultant was coming over from Manchester.
“That gave him concern – that someone was coming over on a Saturday afternoon.
“By this time, I was ringing and upset. I wanted to know what was going on.”
While at hospital, Jonathan accidentally text Kimberley his medical notes.
That’s how she found out Jonathan had chronic myeloid leukaemia.
Chronic myeloid leukaemia, known as CML, is a type of cancer that affects the white blood cells and tends to progress slowly over many years.
It can occur at any age but is most common in older adults around 60 to 65 years of age.
Jonathan, who is from Leeds but now lives in Formby, immediately began treatment.
It appeared to be going well. He started putting on weight and his family noticed he looked healthier.
But the treatment soon stopped working, leading doctors to try every method possible in an attempt to fight the cancer.
Kimberley said: “They lines, but nothing worked.
“They gave him harsh chemotherapy to give him the best chance.”
Sadly, every avenue of treatment tried all failed to work - including a bone marrow and stem cell transplant.
On January 21, 2023, doctors told Jonathan he had just weeks left to live.
Recalling the moment they received the tragic news, his wife said: “I knew, I kind of just knew.
“I just had that gut feeling. I was in Jonathan’s room and he always had his blinds open.
“I could see them all meeting and talking.
“They all came in together and I knew it wasn’t good news.
“The consultant bent down on his knees, held his hands and said his condolences.”
With nothing more medics could do, Jonathan returned home, where he received palliative care.
As the weeks went by, Kimberley remembers speaking to a member of the palliative team on the phone.
She said: “The palliative team rang me and I asked them, ‘Are we still talking weeks? They said it was days and I didn’t tell a soul. I didn’t tell anyone that information.”
Incredibly, five weeks on, Jonathan continues to impress doctors who have been left “mesmerised” by his inspiring positivity.
Since his diagnosis, he’s not taken a single day off work as his job as CEO of an academy trust.
“The amount of messages I’ve had saying what an impact he’s had on their lives and how he’s motivated them to be a better person,”
Kimberley, who met Jonathan while on a weekend away in Dublin 19 years ago, said. “It’s just the person he is.
“When he was having his transplant, he had his laptop open and was doing Zoom calls while attached to chemo. It’s not like he’s saying, ‘Look at me,’ it’s about his love of his job. It’s about doing better for education and every child.”
Kimberley and her children Joshua, 28, Joel, 22, Oliver, 13 and Tabatha, eight, now appreciate every moment they have with Jonathan while he is with them at home.
She became emotional as she said:
“It’s been horrific. If someone were to tell us at the time that it would be days, you’d crave these weeks. But they’ve been really difficult.
“We’ll cherish them. We had a fish and chip night and sat in the bedroom together and he managed to do letters for everyone, he’s written birthday cards.
“Life has been cruel and every time I feel like we’ve got over a day, the next day gets harder.
“His one wish was that he always wanted to be at home and not a hospice.
“He has two young children and I don’t want their memories of their dad to be that way.
“I wouldn’t wish this part on anyone to go through.”
Jonathan’s son Joshua is running the Manchester Marathon to raise money for the Clatterbridge Cancer Charity, which helped care for Jonathan during his time at the Clatterbridge Cancer Centre.