A blog of the moment – nothing more.

 Well, here I am as who I have become – 'a half-day person'. This is how I now describe myself. Still happy, though resigned, for the most part, that it has come to this. My Susan tells friends and family that I find the energy when I want to and this is true, but it comes at a price. Days out are planned with a day of rest before, then followed by a day recovering after. God, this does sound gloomy, but it isn't for a person diagnosed in 2015 with pulmonary fibrosis. From where it came is guesswork - hence the prefix 'idiopathic'. My mother told Susan that, as a child, I 'always had a weak chest' and she died a few days short of her 86th birthday in 2006. In my mid-30s I caught whooping cough and I suspect that damaged my lungs. To date, I consider myself one lucky bunny. Susan keeps a daily journal and I write too. I miss blogging, so here I am back again, but in a less defined way. Half-day person will simply follow my thoughts at a moment during the day. I have no greater ambition than that.

Right now I'm pondering next year's County Council election on Thursday 6th May and how I can help the Labour Party win back control of the county, especially the ward/division I live in: Bramcote and Beeston North. Of one thing I'm sure, the Labour Party's prospective candidate can win. Five months from now; four months into Brexit and Covid-19 still with us, the political landscape in Beeston will be far from settled.

I love how it all comes down to one day — election day!

It's time to hibernate

Two days ago I realised it was time to hibernate, something I’ve been doing the last couple of years. This time two years ago  I had already slowed down to the point where exercise was difficult thanks to my heart condition and I was expecting to have my aortic valve replaced before the end of October. In the event that didn't happen until the end of February last year. No pain or discomfort, just a case of being overwhelmed by lethargy.

Alongside it I had my ideopathic pulmonary fibrosis (IPF), which had been diagnosed in May 2015 and led directly to the discovery of the fact that I had managed to live with only two cusps in my aortic heart valve instead of the usual 3, which meant my heart had spent a lifetime working 50% harder. And my lung condition was only found because of an x-ray I had at the QMC on the day after the 2015 General Election and within 21 days I was facing the prospect of being dead in three years, but here I am battling on, although as of yet it doesn't seem much of a fight.

I started doing what I was told by the medics and my open heart surgery marks the first day still in my Filofax diary. I have been more amazed by the experience than overwhelmed. Even looking death in the eye, and it was a dramatic as that, I felt like an observer, never a victim, but that moment passed in hours thanks to the care and support I received whilst in Nottingham City Hospital.

At the beginning of November last year I had my vanity appealed to (not that the person asking me knew that) and I went to a meeting. Within two days I was in bed with a chest infection that felt as if my lungs were being squeezed shut. Two weeks of antibiotics helped me through it and it was close to Christmas before I felt well enough to go out again. I actually remember that experience more vividly than anything else — which is why when I got the first signs of winter two days ago, the cold, the damp and that tightness of the chest, I stopped!

I will miss the pop-up shop I have been helping Judy Sleeth in and blogged about, but I know the signs and the potential consequences of not slowing down. There will be things I still do, my lung and heart exercise group every Thursday morning, going to Jo in the Local Not Global Deli once a week, but now for brunch and Rosie Lea's on Wilkinson Avenue. I'll walk every day, I'll deliver for the Labour Party and the Civic Society, but I'll avoid crowded rooms and buses, the latter almost the thing I will miss most for the next 4-5 months.

At home I will still cook and go shopping with my trolley, write, draw maps, make bus boxes and watch Christmas films on Channel 5 (as I have done for past two years) if they do them again, even garden a little, not too much as I know the wildlife in our garden depends on it being untidy if they are to make it through the winter. In so many ways I am very lucky. I have Susan and close friends I love and with whom I will do things during my 'hibernation'. Perhaps the word is too dramatic, but it doesn't feel that way if you have spent all of your life being actively engaged with people.

Five days ago I was still in my spring and summer mode, enjoying autumn. Now I am in late-autumn / winter mode busy looking forward. 

Of one thing I am sure. It's good to be alive!

Coming soon a new (or is replacement?) café and bus map imitation.

The signage is up and through the windows there is a glimpse of what is coming. Until 2 December 2016 this location on Beeston High Road was occupied by Gourmet Delights. I did a posting to mark its demise.

At the time of Gourmet's closure the staff thought it was going to become another estate agent. In the event it has stood empty for nearly 15 months before becoming a café again, this time called Coffee & Cream. No opening date as yet, but  in the meantime one has to admire those responsible for their confidence. Others struggle, but you cannot visit them all and we do have our favourites.

On Friday I will be going to one of my favourites to enjoy a rare Stilton Roll with some coleslaw made on the premises. A picture I promise. Last  Thursday it was the best egg bacon & sausage roll you can buy in Beeston for a snip (£5) at Rosie Lea's on Wilkinson Street, off Wollaton Road and within yards of the entrance to Broxtowe Borough Council offices (the July 2017 blog post I have linked you includes a map).

Talking of maps, I have only recently noticed that Nottingham City Transport's September 2017 edition of their bus map (as impressive as always despite the fact that it stopped showing the tram and 'L' LocalLink bus routes a couple of years ago) includes student halls of residence across the city. It seems too much of a coincidence not to be linked to my inclusion of student accommodation on my Beeston map. I may be wrong of course, but it I praise NCT for doing it all the same:

Finally a reference back to my last post about my ideopathic pulmonary fibrosis (IPF) and thank you to those who have contacted me. The post has actually breathed new life into BeestonWeek. Life goes on and people like me are very much part of Beeston. I have never been happy in 'exclusive' groups of any kind, despite joining them, so I am not about to dash off and spend my time exclusively in the company of fellow sufferers — which is why continuing a regular post here takes on a new importance.

Living with lung disease: When life catches up with reality and I'm overwhelmed by déjà vu.

On 21 May 2015 I did a post about being told the day before that I had 'established fibrosis of the lungs'. The news came as a shock, especially when I read that the average life expectancy after diagnosis is '3 years'. Since then I have done occasional posts about my condition. In early-June 2015, during my visit to the City Hospital, I was asked how long I had had a heart problem? In the space of 3 weeks I learnt that I had an incurable lung condition and a heart problem. Scans of my lungs and my heart in the weeks after resulted in my heart condition taking priority and I blogged about that as well (2017 looks good). On 23 February 2017 I blogged about life going on hold as I prepared for open heart surgery four days later. I did a post-op blog on 6 April 2017. I left my health alone until November just gone, when a chest infection hit me hard, which I blogged about on 9 November (link here).


What I have is Ideopathic Pulmonary Fibrosis (IPF), no symptoms as yet but my lung capacity measure has fallen from 90% in 2015 and 2016 to 86% post heart op in 2017, then on Thursday I learned that I am down to 81% and have been referred to a local twice weekly 6 week exercise and assessment programme (dates awaited and which my consultant says 'will be hard work') and in May I will be prescribed one of two medications which might help delay further scarring of my lungs. I have had nearly 3 years to come to terms with my fate, but I was told very early on that progression can occur rapidly, so I have to hope that it will slow down. 

The point of telling you this is because logic says identifying potential lung problems should be routinely part of examining all chest x-rays (if it was then so many would not be going unnoticed). There may be no cure or guaranteed methods of stabilisation as yet for ILD etc. but the longer sufferers are aware of the condition (like me) the better, and, and it must be better for medical teams too.  More data should lead to better outcomes - which is why screening really matters!

I should add that I have never smoked and my heart problem was one I had lived with from birth. My surgeon said, jokingly, it was a good job I'd never run for a bus. Today I feel as if I have been here before, but this time I know it will pass and I will get things into perspective again.

The medication I will almost certainly be prescribed in May is rationed by NICE (National Institute for Health and Clinical Excellence). Your lung capacity has to be between 50 and 80% to receive the medication. The British Ling Foundation has objected more than once to the ban, pointing out that PLF sufferers have a prognosis worse than many cancers. You can read the BLF press release here  dated 9 June 2017. Being on the prescribed the medication will, at best, extend my life a couple of years before I die like my fellow sufferers from suffocation.

In September 2017 BLF published a 56 page report — A map for better care: making effective care pathways for people with interstitial lung disease (Click here for link). It is plain common sense. The report catalogues NHS and other shortcomings in the health and care system. It takes me back to a 1976 consultative document prepared jointly by health departments across Great Britain and Northern Ireland:

As a report and a set of recommendations it has never been bettered in my view. Its signatories included Barabara Castle and Merlyn Rees. Need I say more. At the time I was chair of East Birmingham Community Health Council and the British Pregnancy Advisory Service's Development Officer (1971–1983) and our focus was very much on prevention. Tony Blair and Gordon Brown's Labour governments poured money into the NHS and welfare without a plan and they abolished CHCs! Tories and Liberals, in contrast, have doggedly pursued cutting and privatising services (nor can Labour escape its active role in the latter). Time and again prevention policies have been ignored (flu jabs are an exception).

I have described myself in almost every post about my healthcare as 'one lucky bunny'. Listening to people and hearing their stories I wonder how people with lung disease manage to go undiagnosed for so long? 

The truth is that in the absence of a 'prevention culture' in the NHS people will not present with their cough or breathlessness soon enough and even if they do it may go undiagnosed. A conversation 30 minutes ago with my brother's wife provided a good example. How can a man who has suffered 3 heart attacks have his lung condition undiagnosed until the point when he can walk no more than a few steps?

PLF is not a gentle slope down which one falls until you can no longer breathe. It can come within weeks even with the best of care. Luckily Nottingham is a good place to live with PLF and I am grateful for that, but the time has come when one of the best ways I can help myself and fellow sufferers is to write about it, for make no mistake even in the absence of pain and discomfort (at the moment) I am a sufferer and so are those who love me!