Living with a new reality — lung fibrosis

Yesterday morning I went to the Derby Road Health Centre and left knowing that a chest x-ray on 8 May had shown 'established lung fibrosis'. The enormity of the news became clear within hours. Whilst I now wait my first appointment at the QMC and tests that will tell me what kind of lung fibrosis I have and how advanced it is, the web has already told me and Susan some things. Most importantly, there is no known treatment, that it will get progressively worse and that average life expectancy after diagnosis is three years.

Three years actually means little in the absence of knowing how far advanced my lung fibrosis is. Even the word 'established' can be interpreted in different ways. I was seventy-one last Saturday. Thinking right now about how long I have left is a minor issue in the absence of a detailed diagnosis and it may be some weeks before I have more information.

The web is a wonderful thing and yesterday Susan and I both trawled the web in search of information which is both understandable and easily available. Probably the best site I found was called Breathing Matters to the University College London Hospitals.

If you have stayed with me this far, then you may be wondering why I am writing about this very personal (and terminal) condition. Simply, I set out to write a blog about living in Beeston and the issues which interest me, and that will continue as long as I am able, but lung fibrosis is now part of my life in Beeston and will not go away.

Blogs about living with cancer are not uncommon, but I have yet to find one about living with lung fibrosis by a person with the condition. I am sure they must be out there in the ether somewhere, so I will continue looking.

At this moment, apart from my cough and a slight tightness on my chest, I feel fine, but since being ill with flu/virus for three weeks in December last year, a cough has persisted. Walking to and from Beeston town centre, up and down Wollaton Road, catching the little L10 into the city centre, getting to know Beeston Fields better as I delivered newsletters and leaflets for the Labour Party, there was no hint of breathlessness, although I did notice I was slowing down. It was taking a little longer and put that down to a gammy left knee.

What kicked off the process leading to my x-ray was cutting the grass in our back garden on for the first time. I went to bed early, sneezing and coughing. I put it down to a allergic reaction to cutting grass for the first time in over twenty years, but the reaction did surprise me a little, given that from 1980 until November last year we had lived in a house overlooking Lenton Recreation Ground and seeing the grass being cut with yards of our front door by a tractor and catching the lovely smell of newly cut grass afterwards.

I woke the next morning still coughing and as I did, over the bathroom basin, I was coughing blood. This persisted, in ever smaller amounts over the next two days, by which time it was a Monday, so I made an appointment to visit the Derby Road Health Centre and see a doctor. Susan said to me at the time 'Did you tell the receptionist about coughing blood'. 'No' I replied, adding something to the effect that I was no longer coughing blood, but I knew it was something I needed to get checked out.

Ten days later I was seen by a doctor, who listened to my chest with her stethoscope  and said 'It all seems fine, but we'll get an x-ray and have your knee x-rayed at the same time'.

I was given a letter to phone and make an appointment, which I did for 8 May. After the x-ray I was told that I would only hear from my doctor if the x-ray showed something, and that it would take about seven days. In fact it took just five days for the DRHC to call and ask me to go in and see the doctor about the results of my x-ray — which is what I did yesterday and is why I am sitting here at 7am posting my first blog about living with lung fibrosis. For that is what it is. Part of my life. Not my life. It will be a record of sorts.

My main concern is for Susan, my wife, the love of my life. I have already told some close friends about my visit to the doctor and that I have lung fibrosis (what kind no one knows yet, which is why I have been referred to the QMC). Others I will tell today.

The doctor did a 'finger tip test' to check whether it might be 'pulmonary fibrosis', but my fingertips and toes are not swollen and I can see through the tips of my two index fingers when they are placed together (swollen finger tips and toes might indicate pulmonary fibrosis. At this moment all this is academic.

It is a relief to have a diagnosis; that I have not been wasting anyone's time — for that is how it feels when you have what seems like a small problem. My hope is that I have caught it early. The two blog posts I found related to men still alive six/seven years after being diagnosed, albeit with the help of oxygen. I hope that will be me, beating the odds and having a reasonable quality of life until the end.

At the end of the day these postings to Beeston Week about my living with lung fibrosis are for me and those I love, but I hope others find them helpful too.

Susan had breast cancer in 2006, which was caught early and she made a full recovery. We talked at length yesterday about what is happening to me and I am sure we will go on talking. I had promised Susan I would try to live until I was 99. My mother died five days short of her 86th birthday in 2006. My step-father was 84 when he died two years later and my maternal grand-father nearly 80 when he died in 1976. My maternal grand-mother died aged 69 in 1960. I never knew my father, or who he was, and grew up with my grand-parents. One thing is for sure. I will now spend more time writing the memoir I promised my grand-children back in 2010. How I wish I knew more about my own grandparents and great grandparents (and I know a bit).

When loved ones die you often have little or no notice. When it happens, my passing will still come as a shock to Susan, my family and close friends, but I have the chance to help them prepare. I hope it is still years away and I will fight my lung fibrosis as best I can. I owe them and myself that.

FOOTNOTE, Thursday lunch-time, 21 May:

Just taken a phone call from my doctor. She has got me an appointment at the City Hospital for 1.30pm next Tuesday. I look forward to finding out more about what will be happening over the coming weeks and getting a more detailed diagnosis.  Robert.