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

Relief, no more

No more will self-hurting relieve me of pain,

No more can I ignore the not knowing,

No more a distraction, my head in the sand,

My fear coming true, my senses are reeling.

💜

Where once before I could block out my cares,

Where once before I could simply pretend,

Where once before, there were options anew,

Limitations abound, I know this will end.

💜

Gone are the times when they’d try something more,

Gone are the days, no more tests,

Gone are the trials, the ‘give it a go’s,

Exhausted, brick walls, they have done but their best.

💜

No money could buy an alternative path,

No money could pave the way fairer,

No money can change an inevitable end,

The path now, the finale feels nearer.

💜

What more can I do, can we do to relieve?

What more can be done, comfort givers?

What more now can those at the top change our game?

They can do nothing more, their hopes tiny slivers.

💜

Fault cannot lie at the door of the healer,

Fault cannot lie at the door of the cross,

Fault cannot lie, now, with past misadventure,

Nobody at fault, all know impending loss.

💜

Funny how sadness can free us from hate,

Funny how sadness can rewrite feelings past,

Funny how feelings can change in a heartbeat,

So much more so, when those beats near their last.

💜💜

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Daily Life, Poem, Writer's Blog

A Painless Ever After (;)

Viewing my body from a distant world,

The life all but ebbed, all that is fluid, gone,

A path I vowed never to walk again,

Abandoned, alone, my mind was changed.

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No more a heart beat, hopelessness reigning,

Gone is the heartbreak, enveloped in sadness,

Black hole enticing, its mystery draws me near,

Agonising, aimless, my tears no longer flow.

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Outcast by society, cut off from the world,

Loneliness my friend, my faithful ally,

Silent cries unheard, unheeded pleas,

Darkness, eternal rest or damnation.

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Calling my name, to white light, desperation,

Grasp at my hand, my mind to awaken,

Blackened souls retreat, forcefully gone,

Unconditional pain, your eyes disbelieving.

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Daily Life, Poem, Writer's Blog

What if…

What if…reality is all make believe?

What if…we have no purpose at all?

What if…we have no reason to grieve?

What if…none of this is real?

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What if…we live inside our own minds?

What if…our friends are only imagined?

What if…there is no sunshine to blind?

What if…none of this is real?

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What if…we invent our own child’s face?

What if…our existence is non-existent?

What if…our home land just isn’t a place?

What if…none of this is real?

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What if…we have not even a past?

What if…there is no future?

What if…there’s emptiness, a space so vast?

What if…none of this is real?

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What if… there is no place to call Hell?

What if… there is, then, no heaven?

What if…our head is the place that we dwell?

What if…none of this is real?

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What if…none of this is real?

What if…we have never been?

What if… none of this is real?

What, then, does this life mean?

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Daily Life, Poem, Writer's Blog

Your Last Breath

One last exhalation, your  life is now gone,

No matter you’re rich or you’re poor,

When the sum of your life is your very last breath,

What remains, not the same as before.

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A shell of your being, lies stately and still,

You’re no more than when you first came,

Into this world, you had nothing at all,

Leave with no more than your name.

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No matter, the friends and the family near,

The end’s still the end, nothing more,

Nothing on earth will be bringing you home,

Your spirit, it’s time now to soar.

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Your winter of life found you sorrow, alone,

Life’s cruelest blows you were dealt,

Warm memories shared of a time which has gone,

If only you knew how much sadness we’ve felt.

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Now, as you rest in your bed silently,

The hope we have for you, release,

Gone is the solitary life you have led,

Among angels, may you now rest in peace.

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

Bronchiecstasis – a cough too far.

My mum was in her early seventies when an already nasty chest condition, Fibrosis, suddenly became so much more. She had been experiencing breathlessness on a regular basis since before my dad, her husband, passed away a few years before but now it was becoming debilitating.

Appointments, x-rays and tests at the respiratory clinic of the local hospital revealed scarring on both but, more importantly, more pronounced on one, of her lungs. Breathing was fast becoming a struggle and everyday tasks became more than just chores, they became almost impossible to carry out. A persistent cough, often resulting in a sticky mucous, prevented this once-confident and proud lady from leaving home much if at all. Not the best condition for a recently-bereaved person who needed the company of others. Fearful that she would cough hard enough to induce vomiting, she ventured out less and less until only the most necessary of trips out were made and, only after meticulous planning.

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As a family, we found this difficult to comprehend at first. Why was our mum and grandmother no longer keen to come to our homes and spend time out with us? We pushed her to join us at events such as Christmas or birthdays or a slow walk at the beach but there was always an excuse, a reason not to join us.

Mum’s consultant seemed to evade a lot of her questions, giving the vaguest of responses. I found him quite rude and offhand, initially,  but we later discovered he was confused and a little puzzled because of the way in which her symptoms were presenting. This was not a standard fibrosis diagnosis but every six months, further x-rays and scans were taken which were giving a wider picture of the progression of the illness.

Restricting as the constant coughing and breathlessness were, none of us were prepared for the next phase. For a while before she admitted it to any of us, Mum had been coughing up blood. Just spatters at first, into a tissue, and then slightly larger amounts, at which stage she became more concerned. Having lost her husband to lung cancer, we think she had convinced herself that she was to meet a similar fate, and she eventually confided in us and allowed the consultant to progress further investigations.

One would assume that with the cough, the mucous and the inability to breath freely, the list of symptoms might end there. Surely that was enough suffering for one person to endure? But it was not to be. One morning after a particular spell of breathlessness, which included the unpleasant sensation of somebody sitting on her chest, crushing her very ability to draw breath, mum woke up with a metallic taste in her mouth. She sat up, intending to take a few sips of water, and instead was rewarded with blood pouring from her mouth. She coughed, and was presented with even more blood. She called my sister-in-law who called an ambulance and mum was rushed to hospital. They recorded that she had coughed up well over a 200ml of blood, and that was just the measured amount, so it was in fact much more.

At the hospital, mum was given a drug called Tranexamic Acid which, via a man-made form of amino acid called Lycine, prevents the body from breaking down blood clots, thus stemming the flow on a temporary basis. However, investigations were needed to find out where the blood was coming from. Scans and x-rays revealed the source of the bleeding and the likelihood of a condition called Bronchiecstasis. The irreversible scarring (fibrosis) was nasty enough but this new condition brought with it a whole new ball game. The airways in her lungs, already damaged, had become abnormally widened due to this condition, which had led to a build up of mucous, itself leading to an increased vulnerability to infection. The most common symptoms of Bronchiecstasis are a persistent cough for which there is no cure or alleviation, itself resulting in over-production of mucous and extreme breathlessness and, in very rare and complicated cases such as mum’s, coughing up blood which is caused by one or more of the vessels in the lung splitting open.

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Mum has had many spells in hospital following larger bleeds (called massive hemoptysis) since this condition was diagnosed and there have been some successful treatments of some of the split vessels. The procedure is called a bronchial artery embolisation (or BAE). Amazingly, during this procedure, the radiologists insert a needle into the artery, usually via the groin or inner elbow, and a catheter wire is placed into the artery right up and into the damaged lung, sealing off the bleeding/damaged areas with minute particles. This is all done while the patient is awake and lying on a flat surface, which is extremely difficult when you have a persistent cough. Mum has had a few of these procedures and they keep trying, although the day will come when the bleed is so severe or her arteries so damaged that they can do no more but make her comfortable. The possible future scenarios are dreadful but we try not to dwell to much on that for now.

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Mum is on a permanent low-dose antibiotic which is delivered via a nebuliser, as well as having a supply of Tranexamic Acid which she can start at home to control smaller bleeds, the agreement being that if they become worse she has to be taken straight to hospital. A massive hemoptysis, is coughing up more than 100ml of blood in a 24-hour period. Before this happens, and often as an early warning sign, breathlessness increases, which is caused by blood obstructing the airways. It’s slightly more difficult in mum’s case as she is constantly breathless, but often she feels more poorly when a massive hemoptysis is imminent.

If a younger, less fragile, patient suffers with this condition, surgery such as a lobectomy, to remove the most damaged part of the lung would be offered. This was investigated but the tests showed mum’s heart would not withstand the trauma of such surgery. So, for now, we all simply plod along from day to day. Mum does nothing much because exertion is too exhausting and she is fearful of leaving her home should an attack happen. If my mobile rings at any point before 7.00am, I can pretty much guarantee it will be my sister-in-law waiting with mum for an ambulance, alerting me to meet mum at the hospital to go through the whole life-threatening palaver again.

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Her care whilst in the Norfolk and Norwich University Hospital has been very good, overall. She has been admitted to various wards and the staff, while over-worked, are always kind and caring. As family, we have been treated with kindness and compassion, especially during her worst episodes.

 

Daily Life, Poem, Writer's Blog

Heartbreak for a lost soul

Sadness and heartbreak, of hope there is none,

From the womb shared with siblings, you came,

Help offered gladly, unwanted, denied,

Choosing life’s pathway cannot be undone.

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Vocational choices, there have been a few,

Offered progressions aplenty,

Why, then, oh why, when great chances arose,

Were they shelved with you starting anew?

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Pennies and pounds with no meaning, were lost,

Bailed out more times than a few,

Intention to settle, time and again,

Beds came and went, opportunities tossed.

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False accusations, my way they have flown,

Cutting deep swathes through my heart,

My soul’s been destroyed, such hurt undeserved,

Turmoil is the life into which I’ve been thrown.

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A life, not so easy, its start often wrong,

Booze laced with violence, the norm,

Escaped it to save you, such threats were disarmed,

The life we were leading, we did not belong.

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Now, with your choices, your life keeps the pace,

Of the hunted and damaged and torn,

Desperately tried to keep you from such harm,

Even now, still you sling that life back in my face.

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Not sure I can help you, it’s you who must change,

Chances, they will become few,

Control of your life is what now you must take,

No more can I do this, your world to arrange.

canyoudieofa

Daily Life, Poem, Writer's Blog

Winnie!

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I really need my snuggly Winnie,
He helps me to drop off to sleep,
I cling to his softness and cuddle him close,
I’m too young to be counting sheep.

For Winnie, my soft, friendly, comfort,
He lies by my side in my cot,
His nose near my nose as I drift into night,
Please don’t lose him, I’d miss him a lot!