Month: March 2019

I REMEMBER

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I remember the day
You held me but didn’t hold me,
Stone between me and you,
As always,
Your trembling hands grasping but not grasping,
Below, a torrent of seething, foaming water,
Just like your insides
That once held me
In still waters,
Then, you had no choice,
Oh but wait,
You thought you did,
Once,
But you failed to detach me
From the safety of your womb,
Then, it was me who held on,
Encircled by the still waters,
You could not expel me then,
Or cut me in two with scalpels,
But now,
Here in the foaming waters,
You had your chance,
Exterminate, exterminate,
I felt myself slipping
From your trembling grasp,
A bridge between us,
Was it the bridge to your heart?
Or was your heart stone like the bridge?
Dangling between life and death,
I beheld the waters
Through three year old eyes,
Wise with the terror of a short lifetime,
A knowledge deep in my heart
That your heart was not like mine,
But suddenly
Your hands stopped trembling,
You pulled me back across the bridge,
But not into your false heart,
And in a trice,
There we were,
On the grassy bank of the foaming river,
“It’s nice here” you said,
“Look at the nice grass,”
Today I walk by still waters
In green pastures,
Held by love of a different kind,
Enjoying the banquet of life

TO MY MOTHER

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I walked the world today
Carrying a paper bag
Full of my past, putting into it my present,
Intertwining the two
Going towards my destination,
And hers,
Looking neither to right nor left,
Focused on the One True Light,
The darkness and the light mingling,
Filling the bag,
Snapshots of my life and hers,
Soon she will be gone,
Soon, too, will I,
We walk together towards the light

HARD TO BELIEVE

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It is almost exactly five years since I was told I had gone into remission from my cancer. A time of great joy and hope for the future. But it is hard to believe how things how things have gone on in those five years. I did not expect to be where I am today.

I remember having the scan at the end of my chemo, and true to how it had been right the way through my chemo, they could not get the cannula in. It needed to be in, as they needed to put a dye into me whilst on the scanner. This was to show up the insides of my organs.

Every time I had gone for chemo, apart from the first time, it took seven attempts to get the cannula in. It was excruciating. For some reason my veins just collapsed as they tried to get it in. On this occasion, however, after the usual seven attempts, the Haematologist came to see how we were doing, and took pity on me, saying to the nurses,

“Leave her. She has suffered enough.”

So, the scan was done without the dye. The results would not be perfect, but at least they would be able to get some idea of whether the cancer had gone or not.

And so, some time later, I found myself in the Haematologist’s room, waiting to hear my fate. It was unbelievable – although he could not see absolutely everything, he could see enough to be able to say to me,

“I cannot see everything, but from what I can see I am going to consuder you to be in remission.”

A huge cheer went up as we thumped the air in exhilaration. The whole hospital must have heard it.

He then told me that it would be a good six months before I would feel anything near normal again. So I was prepared.

Life became very exciting, and each week I made huge strides. I could walk with a walking frame, then, in time, with two canes. I began going out and socialising again. Life was good.

I was determined that I would walk properly again. And so, Lent of 2016 provided a good opportunity. I made the decision to go to the little church way out in the heart of the Lincolnshire countryside, and walk, whilst at the same time meditating upon all sorts of things to do with my life. Six whole weeks of walking every single day. It was a good place to go because no one went there much, and the tiny aisle had pews at either side of it that I could put my hands out and hang onto them if I began to fall.

At first, I managed 400 steps. Amazing! Then that gradually increased to 1000 steps, then 2000, until by the end of the six weeks I could walk 5000 steps. I still have that amazing and joyful time documented. All was going to be well. I felt well, and I was going to walk again.

I do not know what happened after that, for, week by week my ability to walk decreased alarmingly. I knew that I had no balance, as the Medical Rehabilitation doctor had told me that. So I was never going to walk without canes. But everything went. To my dismay and great grief, I lost it all. I had physiotherapy, but the physiotherapist gave up on me, writing a Report that said that there could now be no improvement.

It is a mystery to me as to why this happened. Gradually my pain was increasing too. It was all put down to the peripheral polyneuropathy. Nothing could be done.

I am now in the state where I can hardly walk to the bathroom. I just about manage with a walking frame, but the pain that this causes is phenomenal. Additionally, my breathing goes, simply going to the bathroom, and my oxygen levels drop alarmingly. My heart rate goes very high, and all that I can do is lie on the bed for half an hour until I can breathe better again.

Each task, for me, is like climbing Everest. Washing in a morning, and doing my teeth has to be done in bits, so that it can take me an hour to even get washed and dressed. I cannot dress myself – my husband has to help me. The pain that I experience on trying to dress myself is excruciating.

Life is very very hard. Sitting up in bed is very hard. It is exceedingly painful and I cannot sit up for very long. This of course makes typing very difficult. I have to do it in short spurts!

It is now Lent again, and just before Lent, so great was my desire to try and walk again that I went back to the little church, with a view to doing the same as I had before. It MUST be that I could overcome it, I felt. However, I failed miserably.

I now look back on Lent 2016 and wonder. What went wrong? I was so full of hope and joy. What happened?

Since then I have been told that I should be in a Home. Not by Social Services, but by “do gooders”.This has given me a very bad time, and produced much blackness in my life. This may have shown up in my poetry at times. Along with this has gone intense fear, and some anger. My days are not good now.

I try to be cheerful. I try to see the good in everything. But I admit that it is very hard. I am angry at this bloody cancer. Yet there is nothing I can do.

The one blessing is that I can still go out in the car in an afternoon and listen to the birds. That is what keeps me going. Plus my faith.

Of course, the blindness too is exceedingly difficult, as I have also lost the feeling in my hands and feet, and so I have lost the main means that blind people have of finding things. I need my husband to find things for me all the time.

We cope. We married each other for better or worse, and in sickness and in health. We will NOT be separated. We have our beautiful dog, Hope, and I will not be separated from her. I love her and she loves me.

I manage to keep cheerful most of the time, but when this Home business came upon us, I went on a complete downer. As the lighter nights come, and the warmer weather, I shall improve. Everything will feel better.

Sometimes my moods are dark. Often they are cheerful. I hope you can bear with me. Thankyou for reading this.

STICKS AND STONES

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Today a stick began to beat,
I could feel it on my flesh,
And with its beating came my heart,
Pulsing to its timing,
In times past I had known this pain,
Re-ignited by his words

Sticks and stones came in his words,
With each syllable the beat
Who says they cannot cause deep pain
And searing of the flesh?
He really chose his timing,
When the darkness hit my heart

A deep ache filled my heart
That could not be told in words,
I knew he’d got the right timing,
And maybe even the beat,
To guarantee my flesh
Would wither in its pain

The brain remembers pain,
As does the aching heart,
These things are in my flesh,
Do not despise these words,
Just like the stick they beat,
Oh what a glorious timing

Life follows its own timing,
Knowing your deepest pain,
I never will be beat,
Be ready now, my heart,
Remember they’re only words,
They cannot mar your flesh

See now your living flesh,
Defying such dark timing
Don’t listen to these words,
They cannot give you pain,
Strong now is your heart,
Just listen to its beat

I AM WRITING A BOOK!

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Hello all.

I have been posting my cancer story in here, on WP, but I am now writing the book! I never expected to be doing this, but it just kind of happened. About three years ago, someone said to me that I should write a book about my experience of cancer, as it would give courage to other people. I liked the idea, but it never quite happened, even though many other people said the exact same thing to me.

Then, someone here in WP made the same suggestion to me. I thank that person from the bottom of my heart – for this time it has taken root. During the night I began writing the book. I am more happy than I could ever tell you.

Thankyou to you, all my lovely readers, who have said such nice things about my writing. You have all encouraged me so much.

The book is to be the story, interspersed with some of my poems.

I am really excited.

Much love to you all. ❤️❤️❤️❤️

CLOSER THAN YOUR BREATH

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Closer
Than your own breath
Is the comfort you seek
In Love do we have our being
Though pain
Darkens
Our spirits, we reach out and touch
That which is deep within
And find that Love
Waiting
Dark nights
Of weeping leave
Us weak, our hearts open,
In our weakness we find our true strength
In love
Inside
That will never let us go, holds
Us safely in strong arms
Absorbing tears
That fall
Seeking,
You will find rest,
Deep peace beyond measure
It is not far away, but here,
Your heart
Knows it,
Go inside your heart, dear child, lay
Your head down on Love’s breast,
Cry your tears and be soothed,
Trust in this Love,
So deep

WALK WITH ME

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Come with me today, feel the freshening breeze,
Walking on the hill, above the river,
Remember now, this moment only seize
For soon it may be gone, it’s not forever
I know this far to well, but now I live
In the present moment, feel its glory
All that we have is this bright day to give
To the ones we’ve stored to make our story
Take my hand, we’ll walk this path together
I’ll show you things you never saw before
That always you will want to remember
Until we reach one day that farthest shore
But let the wind blow now here as we walk
And let us hear the silence to us t alk

THE END OF TIME

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The world is in motion
Nothing still
As the Dance goes on
Weaving
Gliding
Twisting
Forming patterns like the crystals of a snowflake
Painting pictures
Creating stories
Dying
Birthing
Re-creating
Is there really a time for everything
Or is everything in its time?
And is there a difference?
Soon, time will be no more
The Dance will end
As eternity calls
The picture will be complete
But how will the story end?
As eternity calls
A new book will be opened
A book called “The Book of Life”
And in this book
A day will be like a thousand years
And a thousand years like a day
And here, there will be no endings
Or even beginnings
For time will be no more
In a life that is eternal

THE SCREAM – a Painting by Edward Munch

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Here is a link to something about Exward Munch’s painting, “The Scream.” It is EXACTLY how I feel right now!

.https://legomenon.com/meaning-of-the-scream-1893-painting-by-edvard-munch.html

Without going into too much detail, I sat, yesterday, in the car beside a field, in the greatest darkness I have ever known. Inside, the scream was rising. I did not know what to do, for I felt I woukd be consumed by it. There was no way out. And it is true. There ISN’T a Way Out. The only way is THROUGH it. Yesterday I was in a VERY bad way. Yet I know that this feeling is completely valid. It does not detract from my faith in God. For I believe in a God Who suffered, and Who DOES suffer, WITH us. He too screamed out on the Cross.

And at THAT time, too, darkness covered the earth.

I am in a dark place right now. My suffering feels unbearable. But it is a darkness that glows. With the light of LIFE.

I can explain no better than that.

I hope this painting speaks to you. It does to me.

SUFFERING

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This poem is written in blood because I can only be me.

I seek
Only to live
Walking in my own shoes
Living my life in my own way
Such as
It is
Boxes are not for me fitting
In them impossible
Bits hang out cause
Havoc

Trying
To make bits fit
Causes pain and hurt cries
Emanate from Source of Being
Until
Release
Comes at the end of time sorrow
Taken up in glory
Now we suffer
To live

RELEASE

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And so now I’ve been told
It’s alright to cry
For far too long
I have held my tears
And now
I must let them go
No longer keep them captive
Release them from their prison
Not in my eyes
But in my heart
Sometimes I think
That if I were to cry
I would cry for ever
For grief has been my life
Pain unsurpassable
Yet still I smile
For me it was the better way
For if my tears were to flow
They would be like the rivers
Pouring from the temple
But golden like the temple
Leading me to Jerusalem
The Eternal City

ACCEPT?

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I have had many things said to me about my blindness and God. Whatever, I never seem to be doing it right! At least, right in the eyes of others! This poem expresses some of my frustration and anger over some of the things people say to me.

So long
I accepted
“This is God’s will for you,”
Accepted all that came to me,
Saw stars
In mud,
Trying so hard to see the light
In darkest of places,
Now, the Winter
Has gone
I don’t
See stars, or Spring,
I see, as I throw food
All over like a baby, bib
Round neck,
Nothing
But a monster that would take my
Personhood away, plunge
Me into hell,
I fought
I beat
The cancer, blind
From the “cure” I lost all,
Skin unfeeling from drugs I took,
Legs gone,
Life gone,
I live a blind death every day,
Disconnected from all
Alone, in hell,
Accept?

INTRODUCTION TO BIRD SOAP OPERA

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I don’t know what first got me interested in ospreys, following my experience with the flock of geese flying home to rest that night. I could write so much about how birds became the central part of my life in 2010, and about the emotional impact that they had upon me. IT WAS AS IF I HAD BEEN GIVEN THE GREATEST GIFT EVER. This, from what seemed to be the ashes of my life.

I had not wanted to return to my home county from beautiful Derbyshire in 2009, but it had become a very necessary move, as my husband had become quite sick with post polio syndrome, and had ended up in a wheelchair, which meant that he had had to give up work. We could no longer afford to live in Derbyshire, so sold up and moved back to Lincolnshire, which was a much cheaper place to live. I felt desolate at leaving my beloved Derbyshire. We had always wanted to live amongst the hills, which we finally achieved when we moved to Derbyshire in 2001. It truly was the happiest and most fulfilling time of my life, for more reasons than just the hills. Though the hills were the central factor in my life. And so, the last thing that I ever wanted to do was move back home again. I thought at that time that nothing good could ever come of it, and that nothing could ever match Derbyshire. My heart was heavy. As was my husband’s.

It was with the greatest of pleasure and amazement that we discovered something equally as good, and even better than what we had known in Derbyshire. And, it would never have been discovered in Derbyshire, for our minds were on different things. We would not have been open, perhaps, to this new discovery. I always believed that not much good could come out of flat, seemingly boring countryside. Give me the challenge and the excitement of the hills ANY day! How WRONG I was. I was to discover the glories of my home county anew. It was a PURE GIFT.

I cannot remember the order in which it all happened, after the geese experience, but after discovering herons, swallows that flew in huge flocks over our car at dusk, swooping onto the pond for food before bedtime, making a noise almost as loyd as an aeroplane in flight, my mind turned to ospreys. I vaguely remembered that ospreys had become almost extinct in our country, but with loyal commitment, love and care, and a good deal of luck thrown in, they had been re-introduced again, from just one breeding pair in Scotland. I became intrigued to find out more, and here was where my love affair with ospreys began, and in particular with Lady, who was until 2014 the oldest breeding osprey in the U.K. She nested every year up in Scotland at the Loch of Lowes, and we were able to watch her and her mate on the webcam. But that fuelled a deep desire to see an osprey in the flesh, so to speak. I never thought my dream would be realised. But it was! I will write more of this, but in 2014 it was not known whether Lady would reappear at the Loch of Lowes or not, for her 26th. breeding season. If she did, it would be a miracle. And at that time I was awaiting my own miracle – the news that my cancer had gone into remission. I felt, deep inside me, that if Lady reappeared, miraculously, then just as miraculously, my own cancer would have disappeared, miraculously. On a day in late March 2014, Lady came back. The very next day I was informed that my cancer had gone into remission.

2014 was to be the last year that Lady returned to her Scottish nest site.

I am still in remission, though much deteriorated.

A few dats ago, both Laddie and Lassie returned to what was Lady’s nest at the Loch of Lowes. Laddie appeared first, then, a few days later, Lassie joined him, amidst great joy at seeing each other again, and sky dancing the like of which has never been seen before. Followed, of course, by rather a lot of “nookie.” Lassie will, hopefully, within a week or so, have laid her first egg, and the whole life cycle will have begun all over again.

Watch this space for more of the Bird Soap Opera. I still have to tell you about EJ, of Loch Garten fame, and many more stories concerning Lady, and ospreys.

Oh, did I tell you that I DID see ospreys, on more than one occasion. And I didn’t have to travel far! They came to within five miles of my home! If I could find and post photos, I would, but cannot donthat for the moment.

Watch this space!

GOING HOME

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They were flying in a huge flock above the river at dusk. They were going home, after a day’s adventures. Geese! It was 2009, and we had just moved back to my home county of Lincolnshire, from Derbyshire. For some reason, the sight of them made me cry. They were going home to safety. In 2001 my father had died, and immediately after his death we moved to Derbyshire, to make a new life. Admittedly it was not so far away, as in the other side of the world, or even the other side of the country. But it was far enough away and different enough to provide us with a complete change – something that we badly needed. When we moved, I was in deep grief, and the words of the song “Going Home” would not leave me. My father had “gone home.” I had no idea where to, since he was a self professed atheist, but inside myself, I liked to think that he had gone home to some better place.

They say that losing someone to death brings you face to face with your own mortality. It certainly did that for me, and I knew, without a doubt, that when I died, I wanted to find that place called home that I had never had. A place that was safe and secure. A place where I could rest and relax. A place of shelter from the world.

As I watched the flock of geese that night, the emotions that the sight of them brought up were so strong. I thought of their sheer vulnerability, and for some reason my heart broke. Yes, for thus night, hopefully they would be safe, but what of the days and nights to come?

I do not know why, but it was this encounter that brought to birth my interest in and deep love of the birds. Until then I had just seen birds as birds. But now, i began to sense something of their lives and struggles. I became aware of the drama that could make up their lives. I thought of the joys and the sadnesses that accompanied their lives. And I was hooked!

From then on, I started to watch birds and study them every day of my life. I had discovered a whole new world. They put me in touch with something very deep inside me, that I could not ignore. Nor did I want to.

The ospreys have just returned to the U.K. from warmer climes, to begin their breeding season. I have a deep love of the ospreys. Their fortunes can at times become heartbreaking, but also joyous. Watching them can be like watching a bird soap opera. But I am planning on writing a bit more about them as the season continues.

So far, from what I know, two ospreys have returned to Manton Bay at Rutland Water, and two have returned to the Loch of Lowes in Scotland. There may be more, but I do not know of them.

There is always great joy when a pair of ospreys returns. And I am feeling joy at the moment, and am joining in with the sky dancing that is going on. Oh to be a bird! Free to fly! But watch this space for the Bird Soap Opera! 😀

SITTING IN THE SACRED PLACE

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Sitting in the sacred place
Waiting for eternity
My Beloved came to me
He knelt and washed my feet

Waiting for eternity
My heart began to break
He knelt and washed my feet
And then I knew the truth

My heart began to break
As Love stooped down before me
And then I knew the truth
He understood my heart

As Love stooped down before me
Our souls became as one
He understood my heart
I knew as I was known

Our souls became as one
United for eternity
I knew as I was known
The touching place was here

United for eternity
I knew I was secure
Sitting in the sacred place
Waiting for eternity

#FOWC Release. Last Breath

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FOWC with Fandango — Release

It had been ten days. She had not got over the shock, but she was determined not to let him go. It wasn’t that she really loved him, but she was used to him and she needed their daily fights. It was what fed her. And here he was in a hospital bed. At first it didn’t seem serious. They were going to rehabilitate him. A stroke. He would be okay. But a few days later they were asking her if she wanted him resuscitated. It seemed surreal. Then they told her that he was going to die anyway.

“Not likely,” she thought. “I’ll make him fight.”

And that summed up her life. Fighting.

She tried to talk to him. Told him he HAD to fight. And he DID. He put his fists up. At HER.

Louise knew why he had done that to her mother. Even at the very last she had to take control. She had never accepted illness. It was a mark of weakness and her poor father had never been allowed to be ill. And now he was dying – and that wasn’t allowed either.

He gradually deteriorated. Louise watched it all. She spent most of her hours with him. Her mother waltzed in and out as the fancy took her. It never registered with her that this was REAL. He really was going to die.

And so it was that on a Sunday morning he started to weaken. His breathing changed. Louise was on her own with him. At lunch time her mother put in an appearance, then went off to the hospital restaurant for her dinner. An hour later she waltzed back in. He was about to take his last breath. Louise was holding his hand and talking gently to him. He breathed his last.

“He’s gone,” the nurse said, whilst taking his pulse.

Louise screamed and fell back onto the wall of the room. Her mother stood at the foot of his bed looking at him.

“I had three children by him,” she said. And in that moment she had to RELEASE him.

LOVE IS

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There is a Love
That will never let us go
At the heart of the Universe
Whatever sorrows may flow
The seas tossing us round
The darkness filling our hearts
Until our heads pound
And though we are lost
In uncertainty and pain
Dressed in deep agony host
To fears and doubts innumerable
Love exists, will always win through
Waiting for us to reach out
And touch the eternal always new

SHARE YOUR WORLD – Melanie’s Questions

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https://sparksfromacombustiblemind.com/2019/03/25/share-your-world-3-25-19/

Question 1: what is the best pick me up that you know of, to shake off the blues?

Wearing shocking pink socks

Question 2: what would be the title of your memoir?

The Adventures of the Girl in Shocking Pink Socks

Question 3:- Where do you go when you eat out?

The car

Question 4:-

Do you believe in luck?

Don’t know. Never had any.

Question 5:- Aside from necessities what is the one thing in a day that you coukdn’t go without?

My dog

CRYING

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I was brought up never to cry. All of my life I have found great difficulty with crying. If I do break down anywhere, which hardly ever happens, because I stem it. I feel I can never go back to that place again. Even in my church (which I now no longer go to for reasons which will be obvious with my next statement)I am not allowed to cry. One time, I DID break down, when, after going blind, I could not work out where I was in the corridor, or where the door was. All the pain of going blind suddenly welled up abd I could not stop the crying. But someone said to me,

“THIS won’t do you any good, will it!”

I wrote this poem about crying.

Crying
Is just human,
So long I bore my pain
And did not cry, my heart aching
Inside
Empty
Of all human comfort and love
But now I cry, you say
I am not strong
Test me

FRUSTRATIONS – going into remission

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I still intend to write more of my cancer story – but today I wanted to write this:-

When I first went into remission in 2014 everything looked rosy. I had been bedfast for eight months, and gone through aggressive and gruelling chemotherapy. A few weeks prior to finishing chemotherapy, the Ward Sister had said to me,

“You’ll be walking round shoe shops a couple of weeks after finishing chemotherapy.”

I was still unable to walk at that point, and thus, wheelchair bound. I had been looking at the scruffy shoes that I wore each time to chemo, and remarked on how horrible looking they were.

Sadly, it did not work out that way, though later in time, things did appear to be getting better, which I will talk about in a moment.

No one expected me to be in the state I am in today, and to me it is the greatest frustration that I have not returned to anything like “normal.” Indeed, what I have come to is truly abysmal and very frightening, since I am now deteriorating.

I will never forget the intense joy that I felt upon being told that I was in remission. It had been a long, hard battle. Many times I had wanted to give up. It had been, according to the Ward Sister, “a leap of faith,” meaning that it could have gone either way. There were no guarantees of anything – a fact which I found hard to take when the chemo really stank. But, upon being told, finally, that I was in remission, I felt as if all my cares had gone. I was FREE. No more chemo. Just time, to get better in.

At first, I wanted nothing more than to smell nice. Cancer and chemo literally stinks. So, I longed for nice soaps, perfumes, anything at all that smelled nice. Then I wanted to paint my nails – BRIGHTLY! I had never been one to wear nail varnish. Oh but now I WANTED to. I wanted the WORKS! Make up too. Yet never ever before had I been like this. Bright red, or bright pink was my chouce of colour for clothes. It was almost like an act of defiance against the cancer. I wanted to show the world that I was ALIVE, and bright and cheerful, though hairless! I never did have a wig. I was too ill to wear one, and I certainly wasn’t going to start wearing one now. I was SO proud of my bald head, and even wanted to keep it when my hair started growing again. I loved the look!

At first I had to be pushed around in a wheelchair. But then, gradually, I started walking with a walking frame. It was SO exciting. We went to Garden Centres and looked at the beautiful flowers and plants and hanging baskets. Everything seemed perfect. We had meals in the Garden Centres, which was amazing after a year or more of not being able to eat. I was HAPPY.

In time, I became able to walk with two canes. Not far, but a little distance. Things were going swimmingly. I never ever anticipated what was to eventually happen to me.

One evening, I was watching a programme on the television in which a blind Gospel singer was performing. It was beautiful, but Something very weird happened to me as I was watching. To this day I cannot explain it. Something seemed to speak in my ear saying,

“You are going to be blind, but don’t worry. You can be like this. It will be your chance to shine.”

I could hardly believe this. No one had said anything about going blind, or told me that one of the effects of one of my chemo drugs could be blindness. I felt shocked, but put this voice to the back of my mind. Yet something deep inside me knew that it was true. Strangely, it did not trouble me. I would be fine. I would cope. I would get through as a blind person. I had faith.

Gradually, my eyesight did start to go. I am not going to describe that process, or what it felt like, in this post, as it would make it too long. I will do that in a separate post soon, because it is key to how I am now, and to how a lot of other things happened. Some not good.

Apart from the eyesight issue, I was getting on well, though my walking came and went. We did not understand what was happening to me. In the end, I was diagnosed with peripheral polyneuropathy, which made my muscles actually die. This was again, a gradual process. I now have no muscle at all in my lower back, and hardly any in my buttocks and upper legs. This is the cause of much of my pain. Sitting is very difficult, and I have to lie down for a lot of the time. But also, and more embarrassingly, the muscles in my face, particularly around my mouth, have died. My face has changed shape completely. I am unrecognisable! Eating is very difficult. This part of things, I am finding exceedingly difficult to cope with. Again, this causes a huge amount of pain in my face and head and neck. Nothing can be done about all of this. It will deteriorate also. So this is why sometimes my moods change, and sometimes my writing becomes dark. I cannot be as I am not. All of this has been caused by one particular chemo drug, which I had to have in excess of the normal dose because of the size and extent of my tumours. I worry very much about my future.

I feel so frustrated that I cannot function as normal. I feel frustrated about all that has happened to me. You never expect this to happen to you, from being very active.

I will continue this another time, and I want especially tobwrite more about my blindness.

APOLOGIES

On By blindzanygirlIn Uncategorized8 Comments

Just to say, I am finding it harder and harder to travel around WP. I just posted something on Promote Yourself Monday from Go Dog Go Cafe, but this is just one example of my difficulty. Whilst I can post stuff, and my own links, I can’t read back and follow other people’s links or follow conversations. So this is just a word of apology. I can
post my own stuff in here, and respond to you when feeling well enough. I can go to other people’s sites sometimes, but sometimes can’t manage it. I don’t mean to be rude, but this is just how it is.

I truly do thank you all for continuing to read me though. That neans more than you will ever know, to me, THANKYOU ❤️

NEW SONG

On By blindzanygirlIn Uncategorized3 Comments

And now a line is drawn
Immoveable, stubborn
Keeping the past intact
The future uncertain
A blank page upon which to write my life
Once I could see, now I am blind
So how will I see the marks I make?
Will I feel them in my heart?
Can I create a new song?
Or is there nothing new under the sun?
And is the line really so stubborn
Or does it have a weak part
Where the past peeps through
Squiggles through a tiny hole
Making its appearance unexpectedly
Shocking
Challenging
Do its notes become part of the new song
Rising up to the sky
Like the lark in the morning

ALLELUIA

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Yesterday I thought that death had got me
I felt the darkness put its arms around me
Hold me tightly, lead me on
Everything was closing down
Suffocating was its grip
Inevitable was its hold
I accepted my fate
For, there is a time for everything
And a season
And the time and the season was now
I said “Goodbye”
And rested
But then the miracle occurred
Suddenly there was the beginning
Of light and life
Like a flood it swept over me
Bathing me, cleansing me
And I heard bells ring
Alleluia, alleluia

TODAY

On By blindzanygirlIn Uncategorized16 Comments

Those of you who have chosen to read, or who will choose to read the latest installment of “My Cancer Story” will realise that i suffered greatly. Some of the suffering need not have happened had certain people acted properly.

As I was unable to sleep during the night, through feeling ill again, I decided to write that latest installment. Along with a few poems.

Lately, I have not been feeling well at all, and I have good days and bad days. Even the good days are not all that good, but they are better than the bad ones. I can be all over the place in my emotions. I am a deep thinker, and I think all kinds of things, and one thing that I do wonder is whether, if I had been treated properly by the medical profession, I would be in the terrible state that I am in now. I do not know the answer to that. I do not feel angry, though my husband does. I tend to feel more hopeless and fearful than angry. I just want to find a way of getting through this life, with the illness that I am left with.

Today is another bad day. Much pain, and just feeling generalky ill. I feel the darkness suffocating me. But when I am like this, I try to write happier poems. Or at least, I try not to give way to the darkness and fear within. Writing poetry is my only way of getting through. But my moods and my thoughts and feelings may change.

At the heart of me is a very deep faith. Yet I often question even that. However, there is something deep within me that always keeps me going. Something that always wins through. Despite the crying out and the questioning.

There were some lovely moments during my treatment for cancer, and I will share them with you as time passes. I do not want my story to be a negative onem for in fact, it isn’t.

I hope that you can forgive my rantings on a bad day! I am sure that many relate to these bad feelings, and just to connect, in them is a very good thing. It leads to not feeling so alone.

Today, I am confined to my bed, feeling very afraid for the future, and wondering just what is happening to me. I am not brave, though I have been told that I am. I CAN become very very afraid. Very dark.

I pray that my darkness passes, and that soon I can be out there listening to my birds again, and feeling the wind on my face.

Thankyou for reading this 😊 (was that a smiley face? It was meant to be lol)

PASTURES

On By blindzanygirlIn Uncategorized9 Comments
Lead me to pastures
Where I do not have to have thoughts
Lush green pastures where I can just “be”
Allowing the sun to warm my body
The wild wild flowers to bloom
The butterflies to fly
Lead me to that place 
Where I can sink into the softness 
Of no demands
Where I can throw off
All that I am
And find the peace of nothingness
Lead me to where
There is no evil around me
Lead me to where I can no linger
Feel the pain in my body
Clothe me in the grass of the field
Protecting me from the wiles of others
Take me
Lead me
To those pastures

MY CANCER STORY (cont,)

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(PLEASE DON’T WORRY – IT GETS BETTER AT THE END!) 😊

If you thought that things were bad regarding my doctor in my last posting about my cancer story, this posting will show you that things were to get worse before they got better.

I returned to my doctor after Christmas, having gone through the most terrible Christmas I had ever had. Christmas is never a good time for me anyway. In fact, it is a time that I dread. Family issues have made it a time of deep isolation and pain. In the past we always dealt with it by inviting people to our home who were otherwise going to be alone. However, it was no longer possible for us to do that due to my husband’s disability.

For me, Christmas does not bring light. It brings darkness. For some weeks before Christmas 2012 I had been enveloped in darkness, and the most horrific fear. The horrendous itch that had begun in my body in the April of 2012 had worn me down completely. It was a deep deep itch that nothing at all would relieve. My legs in particular felt very strange inside. I had problems in getting dressed and going in a morning, because of the strange feeling in my legs, but also the whole of my body was affected by this deep itch. As the year wire on I was becoming weaker and weaker. I was unable to eat very much, and by Christmas I was unable to eat at all. In the October I had developed pain in my rectum that was excruciating. One night in particular that I remember, I felt I was going mad with pain. But I put it down to a tear that had, throughout my life, kept opening up in that area. However, the pain was far surpassing any pain I had ever felt at all from that particular problem. I was, on this occasion, holding myself up on the bedroom wall, as I was unable to lie down, and I was rocking from foot to foot in a sideways manner. Surely this pain HAD to go. I had never ever had it like this before.

The pain continued for a while, and I became afraid of food. Not that I felt hungry anyway. But I was afraid even to eat a bread roll. It would cause this pain to begin again. I then became frantic because I was not eating, and I knew I was losing weight rapidly. I thought at this stage that I had bowel cancer, but, something just did not feel right. Later in time, I was to discover that I in fact had a very large tumour at the bottom of my abdomen, pressing on my bowel. Sometimes the pain was bearable, but not all the time.

Words cannot describe the fear I was in by Christmas. I was sick with God knows what, but having to look after my disabled husband. The full body itch was driving me insane, but it had all been diagnosed as scabies. Eating was nigh on impossible. Nothing added up. The darkness overwhelmed me. I had nowhere to turn, my family not being a real family at all. Thus it was that I found myself ringing up my priest on Christmas Eve to ask him to give me the Anointing of the Sick. I did not know if it could do any good, but I was DESPERATE. At least I would be able to tell someone of what was going on. And so, at 4p.m. on the afternoon of Christmas Eve, there I was, sitting in the church. He was very kind, and we talked about eating, but not about the other problems, for I did not want to overburden him.

I don’t think ANYTHING could really have helped me at that point. I had just gone through far too much, and the scabies diagnosis did not ring true somehow. I was lost. All that I knew was that I was overtaken by the most terrible darkness and fear. I was confused by all my symptoms, and nothing seemed to make sense.

I returned home from seeing the priest feeling slightly better, but could not rest. I was exceedingly weak, and the itch alone was driving me insane. Christmas is a very isolating time if you are ill, and it was a case of just getting through minute by minute.

When I returned to my doctor after Christmas he refused to do any more than he already had done, and told me to “wait a couple of weeks”and see what happened. My husband and I told him that I needed referring to a dermatologist, since my skin had broken out horribly over the Christmas period. He refused our request, saying that I was simply suffering from stress.

I left the surgery in tears. I had had enough.

In time, however, the doctor did take blood samples, and he told me that the results were “normal.” This proved to be a lie, as later in time, when I saw another doctor in the Practice, in desperation, she looked at the results, went straight to his office, and told him that there was something wrong with this woman and that he needed to repeat the tests. He refused, telling her that I was scratching, and therefore I had a mild infection.

By this time I had also developed a horrible deep, retching cough, and breathing issues. As I had been asthmatic in the past, he agreed to allow me to see the respiratory nurse for breathing tests. By this time I could hardly walk, and had to be helped into the surgery. The respiratory nurse did the tests, which utterly wore me out, and went straight in to see the doctor, telling him that this woman’s tests indicated either COPD or lung cancer. She also told him how worried she was about my weight loss – five stones in a very short space of time. He passed this off by saying that I was not eating, therefore I WOULD be losing weight. She was not satisfied, but he refused to budge.

By now, we were demanding to at least have me referred to a dermatologist concerning my skin and the horrific itch. Reluctantly, he eventually agreed. Still believing that my problem was merely stress, he said that he expected nothing to be diagnosed. He wrote about my “stress” in his Report to the dermatologist.

And so it was that on a cold snowy day, I went to see the Dermatologist at a local clinic. I had to climb stairs to get to her office, and I could hardly get up them. I could hardly breathe, and I was terribly weak. By the time I got to where I needed to be I was in tears. A lady who was waiting in the waiting room saw how ill I was, and offered to let me go in before her, but they would not allow it.

Eventually the Dermatologist came to the waiting room and called my name. I got up to follow her to her room, which was down a long corridor, and I could hardly walk. She admonished me saying, “Come on. Walk briskly.” I attempted to do so, but almost passed out, and could not breathe.

Once in her room, she looked at one area of my skin, and said, “You have prurigo. It’s just another name for itch.” She prescribed anti-histamines, and told me to get out in the fresh aur, take brisk walks, and eat good food!

When my doctor read her Report, he said he had told me so. There was nothing wrong with me apart from stress.

Matters by now were getting much worse. My husband had been putting all my symptoms into the internet, including the night sweats and fevers, and one thing kept on coming up – Hodgkins Lymphoma.

Dissatisfied, we decided to try to see a Dermatologist privately. In our country that means to go outside of the National Health Service and pay for an appointment. It was exceedingly expensive, and because I was so sick, he agreed to come to our home to see me. He took blood samples, and tested for every known skin disease. A whole barrage of tests. The results came back and, very worryingly I had a high level of something the name of which I cannot remember. However, he wrote to my doctor and said that this woman did not have any primary skin disease, but that she needed to be URGENTLY referred to either a haematologist or a general consultant at the hospital, for my itch and the blood leaking spots were caused by something internal. He suspected cancer.

Upon receiving this Report my doctor still refused to refer me. My husband went to the surgery and demanded a meeting with the Practice Manager, who sided with the doctor.

In the end, it was a beautiful little Pakistani lady doctor from the Practice who saved my life. She was to become like a mother to me. My husband had demanded that the surgery sent a doctor to the house to see me because I was so sick and could not walk or breathe. This lady doctor felt around my neck and said, “You have huge lumps. You need to go to the hospital urgently. I will make a referral. You will go within the next fourteen days.”

And so it was.
(to be continued).

SACRED TIME

On By blindzanygirlIn Uncategorized4 Comments

Sacred time
I am held within you
In the Oneness or all things,
That holds life and death
As if tine were nought,
Life and death, touching,
Embracing each other,
Opposites no more
One the mirror of the other
Reflecting all that is,
In Oneness

SITTING BY THE BRIDGE

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Sitting by the bridge I think
Of the days that have gone since I found you
Seasons in the light and dark
As now the days grow longer

Days have gone since I found you
Many just an endurance test
But now the days grow longer
My heart begins to smile

Days that are just an endurance test
Have formed me as who I am
My heart begins to smile
As I wait for summer to come

Days have formed me as what I am
In fortitude I plant my feet
As I wait for the summer to come
I know there is hope again

In fortitude I plant my feet
No one can take me from my path
I know there is hope again
Whatever trials may come

No one can take me from my path
For I know I walk in the truth
Whatever trials may come
I stand firm on my chosen path

I know I walk in the truth
Discovered through many years
I stand firm on my chosen path
Unwavering and solid

Discovered through many years
Of suffering and pain
Unwavering and solid
It will hold me to the end

Of suffering and pain
I have known so very much
Sitting by the bridge I think
Of the days that have gone since I found you