Bronchiecstasis, Daily Life, Lung condition, Norfolk and Norwich Hospital, Writer's Blog

Thankful for another year?

As we begin a day of low-level celebration for my mum’s 76th birthday, so begins a time of reflection.

A little over two years ago, and following a particularly traumatic hospital stay, mum was told, in no uncertain terms, there was little more that could be done to relieve her of the constant hemopsysis (coughing up large amounts of blood from her lungs) and persistent and painful coughing and breathlessness. A doctor came to the bedside and explained there would be no more Bronchial Arterial Embolisations (BAEs) and the best outcome she could hope for was for them to make her comfortable.

Two years, many antibiotics and approximately ten further BAEs later, the rest of the Respiratory Team have thankfully over-ruled the one who gave up on her and she is, today, celebrating (albeit very loosely speaking) her birthday on Earsham Ward of the Norfolk and Norwich Hospital.

It has not been the best two years of her life and ‘life’ is not the best word to describe what has become an existence, but she is still with us and, at times, driving us mad to the point of walking away.

But that’s my mum. She is quite openly judgemental and easily irritated and expects the world to run in the same regimented fashion as her own life, with much displeasure and disappointment on display should, as is most often, that not be the case.

Mum has always expected one hundred percent punctuality and woe betide you should you be late. She will stare pointedly at the clock if you arrive a second later than arranged. Unless you are willing to acknowledge your tardiness, the conversation will not flow until the error of your timing has been pointed out. I know this is where my phobia (oh yes) of being late has stemmed from. I arrive unfashionably early for everything, my fear of beration for being late so deep-seated that I would rather not arrive at all than enter to find a room filled with people who have been willing to arrive at least on time. I can’t even be late for a Sunday morning breakfast date with my own daughter. I would rather, to the amusement of all concerned, arrive and sit in the car park for ten (ok, often more) minutes than suffer the anguish of making them wait for me. I know why I am like it, but I have no way of changing it. It’s simply not worth the panic.

So, as you can likely imagine, if the nurses are late bringing my mum her medication, or the doctors don’t see her right on time, her mood plummets and we have to bear the brunt of her gloom. Being in an NHS hospital, where staffing is tight and wards are full to overflowing, you can imagine it’s not easy to be punctual and if the nurses are chatting at their desk, which unfortunately for them is right outside my mum’s room, she will stare at them pointedly until she gets the attention- her voice clipped and irritated – and they will be blissfully unaware of their crime, if there even was one.

Mum’s condition, Bronchiecstasis, has left her permanently breathless, coughing violently at the slightest movement resulting in further breathlessness and, at the first sign of infection, which is more often than not, coughing up blood. Imagine waking up to a metallic taste in the morning, gingerly sitting forwards and, before you have even taken a step, you open your mouth and without even a cough, a large amount of blood spews forth. At times, there has been up to 400ml of blood which is more than the volume of a can of your favourite fizzy drink. According to the NHS guidelines, anything more than 100ml of blood in a 24-hour period is considered a massive hemoptysis and a medical emergency. Mum has the good sense to know that normal, for her, is anything over 250ml because if she didn’t change the criteria, she would be calling for an ambulance most days. It’s terrifying.

As she celebrates her 76th birthday on Earsham Ward and into her second week of this stay, the fifth in the past six weeks, she is waiting to find out if the radiologists are prepared to carry out one more BAE and attempt to reach the bleeding vessels they have, in the past, been unable to access. If they agree, she may spend many hours lying flat on her back with a tube in her groin through which the necessary equipment is passed and finds its way up into her severely damaged lungs, to cleverly seal the bleeding areas. At times, she has spent over six hours having the procedure, throughout which she must remain awake and cough as little as possible, which is ironic because of the condition being treated.

The rollercoaster of damaged lungs, built up mucous, swelling vessels, infected, splitting and, thus, bleeding vessels is ongoing and there is no cure as she is far too frail to undergo the removal of the most damaged part of the lung. Removing the damage would, at the very least, alleviate the bleeding, resulting in less coughing and breathlessness but her body won’t take it, so the team struggles on.

I don’t want her to spend her birthday, when we are close to it possibly being her last one on this earth, lying on a table undergoing an unpleasant procedure, but if it gives us a few more months with her, then so be it.

I wonder if I am selfish for hoping for more time with her, when her life has become a mere existence and every day is a constant struggle. But the alternative is one neither of us wishes to face right now and, selfish or not, we take one day at a time and hope she is with us for the next.

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Daily Life, Places to write, Writer's Blog

Writing and blog progress almost a year on…

As is traditional at the beginning of a New Year, I have been pondering the progress I have made with my writing and, more so, planning over the past year.

In February 2018, I made the decision to take a refresher course in writing before fully embarking on the planning of whichever direction it took me. I signed up with The Writer’s Bureau and enrolled in their Comprehensive Creative Writing course. I chose to tackle the fiction writing part of the course first, thinking it would be my strongest and, therefore, the easiest, to start with.

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A published author, Sheila Bugler, was assigned to me as my tutor and I have been infinitely grateful for her kind words and constructive comments throughout. At this stage in the course I am feeling quite pleased with myself, verging on a smugness, as my feedback has been filled with comments such as ‘excellent’ and ‘superb’ and the criticism has been over minor points which I have not found difficult to put right. Much of my grounding in grammar has stayed with me in the many years since I left school, leaving me with the energy to concentrate on content. I sailed through the fiction half of the course, even managing to have some stories and an article published.

The non-fiction side of the course started well with assignments dictating the content but when faced with which publications to write articles for I flailed around wildly. ‘Write about what you know’ was the new mantra. I felt that people wouldn’t want to read about my interests, thought they would find them boring and lacking in pzazz. I am pleased to say I was wrong, and articles ranging from my cravings during pregnancy to my addiction to dancing did spark some interest. I even received feedback from my blog posts about my husband’s kite flying.

Blog posts. Now there was a thing I hadn’t given any thought to. I didn’t even have a blog until midway through 2018. My course advised setting up a blog, Facebook, Twitter, Pinterest, anything through which I could publicize my future work, even if I didn’t plan on self-publishing. I duly trotted off to my faithful friend, the World Wide Web, researched some blogs and started planning my own. I wanted a neutral colour scheme for my site, so I opted for an almost neutral pH of green/blue. I needed a header which was different but stood out as me. Having cleared my spare bedroom of as much clutter as I could, I had purchased a screen to hide the remainder of my junk. The screen was so beautiful I decided it could be my feature image. And so it is!

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In the past few months I have been slowly building my followers and have over 120 blog subscribers, over 1100 twitter followers and my Storytellingdancer facebook page receives lots of likes (when I remember to share my posts). Sharing posts can become a habit and I try to tailor them to the right social media, while trying to build a suitable audience. I follow lots of wannabe authors like myself and it is great to read and share attempts, successes and failures. I started with Pinterest but without having too much to ‘sell’ I have dropped away from the medium, dipping in only now and again when I can be bothered.

In summary, my writing is starting to go from strength to strength, with published articles and short stories accumulating on my desk. My novel, or should I say novels as I have four which I have started, is still very much a work in progress but one day I will settle to it. Maybe when my course is finished and I have more time for it.

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I continue to add some of my unpublished poems and short stories to this blog and the relevant pages and the plan is to actually HAVE a plan for my blog in 2019. Watch this space – might still be empty in a few weeks time and then my gears will kick in with a vengeance. All suggestions and tips greatly received from fellow bloggers. I need to plan my blog time, moving between poems, stories, general daily life, dancing, kite flying (my husband not me) and I don;t want to post more than five or six posts a month for fear of driving my audience away rather than encouraging new readers.

For now, as I am on my lunch hour at work, I will be content with one poem per month, one Ceroc dancing post per month and then a topical post too. Even that looks messy – I definitely need to plan this more methodically!

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