AS KATIE Price continues to bravely speak out about her mum’s terminal lung condition, I decided to share my story about the huge impact this rare disease has had on my life.
In July 2015, my dad, Terry Marshall, was diagnosed with idiopathic pulmonary fibrosis (IPF), a disease where scar tissue builds up in the lungs making it harder to take oxygen from the air as you breathe.
It seems strange looking back that I am unable recall the moment my parents told me the devastating news, but I can remember spending the following months contemplating the word “terminal” and the inevitability that came along with it.
It was difficult to imagine that my dad had just three or four years left to live and that he would not be there to accompany me at major milestones in my life.
Will he be there to see me graduate? Who will walk me down the aisle now?
I found great comfort in my friends, who shared their sadness and talked about their memories of my dad but, with each conversation, I was able to predict one thing that they would all ask – what is IPF?
More people die from pulmonary fibrosis than from leukaemia and many other cancers, according to the charity Respiratory Futures, yet it remains a little-known disease.
In 2012, about 32,000 people in the UK had IPF, according to the British Lung Foundation.
But the disease has been in the headlines since 2017 with the death of TV personality Keith Chegwin and, more recently, the diagnosis of Brighton-born Katie Price’s mother, Amy.
In several high-profile television appearances, Katie and Amy, 66, have spoken frankly about how the cruel disease has taken a physical and emotional toll.
Speaking on ITV’s Good Morning Britain earlier this month, Amy said she believes she is in the final years of her life.
She said: “I’m in the last couple of years now. What with Covid and everything, if I catch a cold or Covid there’s no hope so that would be the end of it for me.
“But positively, I’m hoping, I’m pushing to see if I can get on the transplant list because there is no cure and there’s nothing more they can do for me. It’s just palliative care keeping me comfortable.”
My dad, a mechanical engineer, was never considered for a transplant because, at the age of 65 at the time of diagnosis, age was against him. During the last year of his life, his condition began to deteriorate rapidly.
I was in my last year of study at the University of Leeds, with my head deep in books as I frantically tried to complete my degree, when in the background my dad was becoming increasingly dependent on care from my mum Teresa.
He had become reliant on oxygen as he desperately fought to get air into his lungs.
When I returned home that summer, I was struck by his frailty and fragility, yet even with the word terminal echoing in my mind and the reality in front of me, it still did not enter my mind that these could be the final few weeks.
He found just enough strength to watch me graduate from university via a video link while in his hospital bed at our family home in Nottingham.
On September 18, 2018 my dad died at home after spending three long years fighting the disease.
I was there with him alongside my mum, his wife of 45 years, my sister Lisa and her daughter Nicole and my brother Damian.
It is easy to become overwhelmed by the memory of those blurry and sad few days that led up to and followed my dad’s death, but I don’t want to remember him like that.
Instead I want to remember him as a funny, tea-drinking, Leonard Cohen fan with an unassuming manner and the gentlest heart.
I am hopeful that with continued awareness and more funding for research, other daughters, wives, sons, brothers, sisters, aunties, uncles and grandchildren will be spared the heartbreak and grief I went though.
The British Lung Foundation is funding research that looks to develop better treatment and care in IPF, and also develop a better understanding of the processes that lead to scarring.
Although more and more people are being diagnosed with the condition, it is still not known what causes it. The aim of the BLF’s work is to change the lives of people living with fibrotic lung diseases.
To donate to its research, visit https://www.blf.org.uk/donate