Patient story – Karen Spence

Karen’s husband, Mick, died of mesothelioma in 2020, very shortly after diagnosis. Karen shares their story in the hope that others will not be afraid to ask questions when faced with a similar situation.

Michael – or Mick as he was always known – joined the army at just 17 years old. He was a Royal Engineer and talented rugby player. Mick loved the army life and being a soldier was very important to him.

For a while, Mick was stationed at the Inglis Barracks, in Mill Hill London. In 1988, while Mick and his fellow soldiers were sleeping, their barracks was bombed by the IRA. Sadly, one soldier was killed and nine others injured. Mick was badly affected by this and suffered post-traumatic stress disorder for the rest of his life; he would wake from nightmares still being able to taste the dust in his throat.

When he left the army, Mick had various different jobs and continued to play rugby at a high level, as well as coaching youth rugby.

Mick met Karen in 2004. They enjoyed a whirlwind romance and Karen says they ‘just knew they were soulmates.’ The pair married just two years after meeting in December 2006.

In 2008 Mick began to experience some loss of sensation on his left side, extreme tiredness and a general feeling of being unwell. It was eventually discovered Mick had suffered several ‘mini’ strokes or transient ischaemic attacks (TIA). A scan revealed that four areas of his brain had been damaged due to the TIAs.

Mick was only 38 and struggling to recover as quickly as he would have liked. He started a support group for other young people who had suffered strokes. Mick and Karen noticed that Mick’s recovery seemed to be a lot slower than others. He had terrible fatigue and never seemed completely well. In October 2019 was given a home ventilation kit to help with his breathing. His condition was put down to ongoing effects of his stroke.

Despite the huge impact of the stroke, Mick continued to make Karen laugh every day. He would say that making people smiled made him happy.

It was in December 2019 that the couple became convinced that something else was wrong with Mick. He felt really unwell and began to experience pain in his lower back.

In February 2020 Mick was struggling to breath. They called an ambulance and the hospital found fluid on his lungs; it was thought that he had pneumonia. Mick had an x-ray but due to the amount of fluid on his lungs, it wasn’t possible to get a clear result. A chest drain was fitted for nine days then a scan was arranged in preparation for discharging Mick.

However, the results of the scan showed the cancer in the lining of his lungs. When giving Mick and Karen the diagnosis of mesothelioma, the consultant asked if Mick might have been exposed to asbestos in the past. This is when Mick said that it was quite likely that he was exposed during his time in the army – either through his work as an engineer, or during the bombing of the barracks.

Not having heard of mesothelioma before, Karen researched it as she wanted to know as much as possible about his prognosis so that they could plan for the time he had left. Mick, however, seemed to be in denial about it and thought that the doctors had made the wrong diagnosis.

A few days after diagnosis, Mick slipped off the side rails on his hospital bed. This resulted in a broken arm which alerted the doctors to the fact that the cancer had spread to Mick’s bones.

Despite the devastating diagnosis, when Karen talked to the medical team, they were able to discuss discharging Mick and it was thought that he had a few months to live.

However, that night Mick fell out of bed. The fall was very serious for Mick and meant that he was put back on the high dependency unit. Mick was fading rapidly and the medical team said that there was little more they could do, other than to keep giving him pain relief. Mick deteriorated quickly and, with Karen by his side, died just two and a half weeks after his diagnosis.

The tragedy has taught Karen that anyone in a similar situation should never be afraid to ask questions, and to keep asking. She feels that, for years, all of Mick’s symptoms were put down to his TIAs and that nobody investigated any further. Karen wonders if, had they pushed for further investigations and asked more questions, the mesothelioma may have been found sooner.

Karen would encourage patients and carers to be aware of symptoms and to mention, as soon as possible, if there has been exposure to asbestos.

“Don’t worry about being too polite. You’re entitled to answers and to encourage healthcare professionals to look beyond the obvious,” Karen says.

Mick had a strong faith which is a comfort to Karen as he believed that his death would take him to a better place. Following Mick’s death, Karen found counselling a great help and can now concentrate on her own wellbeing and focus on the wonderful years of love they had together. By sharing hers and Mick’s story, Karen hopes that she can help to raise awareness of mesothelioma and the dangers of asbestos.