The cruel disease which took my Phyllis from me

In November last year Michael bade a loving farewell to his wife of 48 years when Phyllis lost her battle with the little known terminal illness pulmonary fibrosis.

Despite his heartbreak he was determined to speak out about her health struggles so that more people can be made aware of the cruel disease.

As a young man Norfolk-born Michael served with the Royal Military Police and was stationed in Northern Ireland in 1972, where he lost his heart to local girl Phyllis.

The couple lived in England until 1982, celebrating the birth of son Jason in 1975.

However, with a longing to return to her hometown to be closer to her family, and especially her father, the Hewitts moved back to Lisburn.

After many years of happy marriage, and just a short time into their retirement together, Phyllis took a chest infection which knocked her off her feet.

“The beginning is hard to ascertain but we think it really started in Christmas of 2018 when she first became ill with a really serious chest infection,” explained Michael.

“She never really got over it and in the summer of 2019 she took another serious chest infection and her oxygen level was dangerously low.

“We had to take her to the A&E at the Lagan Valley Hospital and she was admitted for about five days when the respiratory team took over. She was released and put on medication. In October 2019 she was diagnosed with pulmonary fibrosis.”

Pulmonary fibrosis is a terminal condition but it is not one of which many people will have heard.

According to the Pulmonary Fibrosis Trust it is the end stage of over 200 different lung conditions which, due to scarring of the lungs, makes the transfer of oxygen via the bloodstream to the brain and other vital organs more difficult.

Pulmonary fibrosis affects approximately 70,000 people in the UK, with approximately 5,000 dying of the condition each year. For many of those affected, including Phyllis, there is no known cause. “There were a lot of questions asked,” continued Michael. “One thing that came up was that she used to be a hairdresser from she left school. In the 50s, 60s and 70s hair sprays and chemicals used in bleaching may have lodged in her lungs and lay dormant until she got that bad chest infection in 2018. We don’t know that’s the cause but it was the only thing we could think of.”

Shortly after being diagnosed, Phyllis and Michael travelled over to see her sister Evelyn in England, where Phyllis celebrated her 75th birthday. Sadly this proved to be the last time the sisters saw each other.

When Covid-19 swept the world in 2020, it put an end to any plans the couple had to visit family in England and instead, due to the risk the virus posed to Phyllis, she had to go into isolation. Whilst she didn’t suffer from coronavirus, the pandemic and the restrictions in place made things even more difficult for the couple.

After her diagnosis, Phyllis and Michael were told by doctors that patients with the condition usually had a life span of two to five years. Sadly, Phyllis passed away just one year after her diagnosis, on November 25, 2020.

During the final months of her life, things became increasingly difficult for Phyllis. Oxygen machines were installed in the couple’s Benson Street home and a stair lift was fitted so that Phyllis could get up to the bathroom and bedroom.

However, despite being on oxygen for 24 hours a day, Phyllis found it difficult to stand for even a few minutes, with Michael having to lift her onto the stair lift and look after her personal hygiene.

“I couldn’t leave her on her own,” Michael explained. “I could only go out to Tesco for half an hour to get some food. She never complained about the state she was in but she was upset that she wouldn’t see our granddaughter grow up.”

Despite benefitting from a short course of steroids, Phyllis continued to decline and on Monday November 23 Michael noticed that she spent the day in bed and was very tired. “It was unusual for her because she always liked to get up,” he explained. “On the Tuesday morning she couldn’t lift her head from the pillows. I got her up to use the commode and she collapsed on the bed, She was unconscious and to be honest I thought that she had gone.

“I called the ambulance and she woke up but they said her blood pressure was very low and they rushed her to the hospital.

“She was admitted to the coronary ward at the Mater hospital in Belfast. That day the doctor called me and told me there was noting more they could do for her, apart from making her comfortable.

“They let Jason and me go to see her for an hour and she was sitting up with the oxygen mask on and was able to talk to us. It was about three o’clock in the afternoon and we said a very loving goodbye. The doctor told me she knew she didn’t have long left but she never mentioned it to me and I didn’t mention it either. I think she wanted to spare Jason and I.

“At 11.15pm the hospital rang to say she was in a critical condition so Jason and I went back down. Sadly we missed her by ten minutes but we were able to go into the room with her.

“I have a big hole in my life, and it will take much time to fill, but I know that she is at peace in heaven and that I, as her loving husband, had done all that was possible. I do get comfort from that.”

Phyllis was cremated and her ashes were recently interred with her mother and father in their grave at Holy Trinity Parish Church in Aghalee,

Despite how painful it is to talk about the loss of Phyllis, Michael was determined to speak out to raise the profile of this terrible condition.

“At the time I didn’t even know there was a charity for pulmonary fibrosis,” explained Michael. “I told Jason I wanted to look online to find out more and I came across the Pulmonary Fibrosis Trust. It is an organisation that cares for people that have the condition.

“As soon as I found out about it, I contacted them to share Phyllis’s story.

“I want to get people talking about it and thinking about it. If people are breathless they maybe put it down to getting older but you need to get it checked out. It is always better to make sure it is nothing more than a chest infection.”

As well as raising awareness, Michael is determined to raise money for the charity as well. “Because the Trust is a charity I want to do something for them,” he continued.

Never one to shy away from a challenge, Michael is hoping to take the plunge when the covid-19 restrictions are eased, and complete a sponsored parachute jump.

“I would like to do something like a parachute jump nearer to the anniversary of Phyllis’ death,” he said. “Pulmonary fibrosis is a cruel disease which has taken Phyllis from me. It needs more publication, more investigation and above all more finance. I hope that in the future months I will be in a better position to help do that.”