Month: December 2022

AS WE APPOACH NEW YEAR’S EVE

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Friday was a tough day again. I felt very much that although we have a new year beginning, nothing can change for me. We will still have the same struggles, that become overwhelming at times. We know that my body will deteriorate more, which frightens me very much. On Friday morning, after making a few posts in here, things happened at home, and I ended up in a very distressed state. I fell asleep after posting in here, as I was exhausted, but I had the most terrible nightmare that I could not come round from. It was the result of something that happened to me some years ago. I began to really dread New Year’s Eve. So much fear rose in me. I felt that I could not possibly go into another year. I was literaally freaking out. In the afternoon i became worse, and did not know how to deal with it. I felt that my life did not matter any more. Temptation tortured me. What good was my life now? I do not know how I came out of that, but I did in the end, but I know that this may return until the New year is over. I will be glad to see the back of everything and get back to normal. I know that temptation will overwhelm me on new year’s Ever. I have some terrible memories of new year’s Eve. I may write about it in here. How terrible it is when bad memories come back and you have to deal with them. I pray that iI can deal with things successfully. The darkness is terrible and it will not go until we are into the new Year.

DAZED

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Dazed and paralysed
Punch drunk she fell to the ground
Then was told to walk

Barefoot she got up
To receive another blow
Down she went again

This time she was broke
No one could walk in her shoes
She hadn’t any

No one saw her die
She made not even a sound
No one noticed her

THE PATH

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The path had been made straight,
Smooth under the early sun,
Just in time for my arrival
Though no one knew I was coming,
It seemed it was just for me,
Time had been waiting

Long months had I been waiting,
My path had not been straight
Darkness then attended me
I never saw the sun
I didn’t see its coming,
Was shocked at its arrival

This was a new arrival
Light for me had been waiting
This day it saw me coming
My mind now perfectly straight
The warmth of the early sun
Was here, protecting me

Inside, She greeted me,
Seeing me on my arrival
Hidden from the sun,
In the darkness waiting
Her truth had always been straight
Eternity was coming

Even the birds were coming,
Singing their songs to me,
Is Truth always this straight
So joyful its arrival?
Eternity will not be waiting
And neither will the sun

Gone for a while is the sun
That shone upon my coming
Joy for me is waiting
Silence falls on me
Soon will be my arrival
Now that the way is straight

I walk straight along the path waiting for my coming,
Guided by the sun shining light on me,
Now is my arrival, eternity was waiting

GIVE ME A LIGHT

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This is my favourite poem of all time, by Minnie Louise Hoskins, entitled God Knows

And I said to the man who stood at the gate of the year:
“Give me a light that I may tread safely into the unknown.”
And he replied:
“Go out into the darkness and put your hand into the Hand of God.
That shall be to you better than light and safer than a known way.”
So I went forth, and finding the Hand of God, trod gladly into the night.
And He led me towards the hills and the breaking of day in the lone East.

So heart be still:
What need our little life
Our human life to know,
If God hath comprehension?
In all the dizzy strife
Of things both high and low,
God hideth His intention.
God knows. His will
Is best. The stretch of years
Which wind ahead, so dim
To our imperfect vision,
Are clear to God. Our fears
Are premature; In Him,
All time hath full provision.
Then rest: until
God moves to lift the veil
From our impatient eyes,
When, as the sweeter features
Of Life’s stern face we hail,
Fair beyond all surmise
God’s thought around His creatures
Our mind shall fill.

A DARK PAINFUL POST. PLEASE IGNORE IF YOU WISH

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I feel as if I am fading and slipping away. I am very frightened. The Christmas period knocked the stuffing out of me. It was the most terrible day. Just so alone. After Christmas I attempted to pull myself up by my boot laces as I always do. But this time I could not. I have lost my strength. When you are in bodily pain and blind you have to have mental strength to keep going. So far until Christmas I had my black moments when I would cry and cry, or just sit paralysed on the bed. I always managed somewho to find some way of bringing myself round. But this time I can’t. The effort is just too great.

I used to use various methods to bring myself round. One was prayer because whatever I believe or don’t believe about God it seemed to help. My faith has been tested beyone endurance, not by my illness but more by the rejection of us and the running away from us by family and also my one time church family. I could not believe that someone could just run away like that and leave us completely alone. Also the attitude of Social Services who will not recognise our need, has contributed to my loss of faith. I have had a lot of pain and darkness in my life but always before I managed to keep faith. But now, I sumply cannot.

I know what my future is and I dread it. I feel as though this coming year my life will go. Also that I will be taken away from my home and forced into a situation that I simply could not deal with. They always say that they want people to be cared for in their own homes but that care has not been forthcoming for us despite a lot of fighting including contacting our MP. We seem to have slipped through the net.

Living in totaly darkness and being immobile and in pain also makes you withdraw from the world when you have tried desperately to remain part of the world and failed.

I look back because I cannot look forwards. There is nothing in front of me. My life is gone. I find it hard to believe that someone as lively and active and friendly as me could end up like this. But gradually, now, my senses are leaving me. I simply have no strength left. We need human company at times and we simply do not get it. We need a certain amount of actual help too, but it is not forthcoming.

Some days I contemplate what to do and wonder if my mother was right. That I should have gone to Switzerland. Naybe I should have.

This is a very black post, but this is what even strong people can come to.

If you have any boot laces then please send them to me.

A DIFFICULT DREAM

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This morning I awoke at around 7 am and did my usual thing. I posted a couple of haikus in here. After a while I fell back asleep again. I think I fall to sleep because I have nothing but darkness to look at. There is no stimulus for me. I had a dream that seems to say so much to me. I dreamt that I was in a room in a building and there was a dog in the room. I sat down on a little settee and the dog jumped up and started talking to me. I was so surprised that a dog should talk but it was nice. I put my arms around the dog and it just kept talking.

When I awoke I awoke in fear and panic because of my blindness and the darkness and my helplessness and aloneness. It was not a good feeling. I realised that I had the dream because no one ever talks to me. My husband has lost his speech and can say very little and I just look at darkness all day. I tend to post a lot in here because it is something to do, and some kind of contact with the world. I am very afraid of the future. We never see anyone from one week to the next. I am frightened.

THE NEW YEAR

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We are all looking to the New Year now. What will it be for you? I used to love New Year. In years past we would go out dancing and meet with our friends. We had a great time. I used to love the fireworks too. Our New Years now are very different. They are spent in our bedroom with hubby sitting in his wheelchair and me on the bed. We do stay up to see the New Year in but we feel sad that we cannot celebrate it as we used to do. Somehow though there is still a sense of wonder and excitement about it. It is just another moment in time, but that moment seems to hold great significance. As we look forwards to the New Year we do it with fear in our hearts. What will happen to us? I fear the deterioration that is taking place relentlessly in my body. I fear for my future. I fear for my husband’s future. We keep hoping that there will be some kind of improvement in our lives, but so far we can see no prospect of that. The only bright spark on the horizon is that I do hope to get my books published. One of them will vbe a book of poems and the others are on various subjects. Like for instance blindness. I am not a very ordered person however, and I am always working on about three projects at once lol. I write as the fancy takes me. I just hope that for us there will be an improvement in our lives in the New Year.

I STAND HERE

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I stand here in the clearing morning haze
With night’s sad dreams still living in my head
In this dark hour I stumble in a daze
By doubts and fears my spirit now is fed
In silence still I try to find the ways
That lead me from this Dark Night where I fled
To find the walls that I had built around
My soul that my True Self could not be found

A STORY THAT HAS TO BE TOLD – part 1

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CHAPTER 1

THE DARKEST DAY

It was a bizarre sight in the dingy hospital room that beautiful Spring morning. My mother was sat on my bed kissing my head whilst everyone else seemed to be studying the ground. The nurse’s plastic apron was flying free as if in a wind, as she had it untied, and I was sitting up in the bed. It was dark. But then most of my life had been dark. It was just that this day seemed darker than any other. I had just heard the words,

“Mrs. Lewis, you have cancer.”

“Will it kill me?” I had asked.

“I don’t know,” the haematologist had replied.

Outside it was a beautiful Spring day, with the trees in full bloom and the gardens full of the most colourful flowers. There could not have been a greater contrast between the outside world and the inside of this room. The darkness was made worse by the fact that the blind had been pulled down on the window to protect my raw, bleeding skin from the hot sun. It all felt so unreal, with the mother who had always hated me, and who had never wanted me to live now kissing my head. She was a woman who hated any show of love or affection, and who had always punished me for being alive and surviving her abortion attempt when I was in the womb. To have her now kissing my head felt strange and rather shocking to me. I am not sure which was the greater shock, the unexpected cancer diagnosis and the words that I may even die, or the kissing of my head by my mother. It was one of those bewildering days that will stay in my memory for ever. It was to be the herald, however, of much darker and more bewildering times to come.

I had gone to the hospital that morning having had no hint at all of what was to come. I thought I was simply going to the hospital to have some blood tests done so that the right antibiotic could be found to deal with the horrific skin problem that had been plaguing me for a whole year. I simply had an infection, and it would be cured. Admittedly I had become sicker and sicker over the course of one year, and had lost five stones in weight and had a deep retching cough and could no longer walk, but in my usual inimitable way had thought it to be nothing serious and almost blamed myself for allowing myself to get into this state. I should have been stronger and fought against being in the wheelchair that I was now in. I should have fought to keep walking. My doctor had not helped much either, saying that I was simply suffering from stress and I was only itching because I kept scratching. He had made light of everything, and I almost felt guilty for being ill. So, when we entered the hospital that morning, and were going through the swing doors into the ward where I had been told to go, and I saw the words “oncology” and other such frightening words above the doors, I exclaimed to my husband,

“It says oncology up there,” and he replied,

Yes, but you are here to see a haematologist.”

I had little idea of what a haematologist was, but I certainly did not associate haematology with cancer. I knew that it was something to do with the blood, but I thought that there was something wrong with my blood that had made all the tiny spots appear on my skin that bled profusely and itched horrendously day and night, giving me no rest at all. As the nurse who had collected me from the car park in a wheelchair pushed me along the corridor, I saw on my left a woman in a bed hitched up to a drip, with no hair. The nurse said to me,

“That is the treatment room,” as if I would be eventually going in there. I ignored her, thinking she had got hold of the wrong end of the stick. I was simply there for an infection and would not be going in there. I was therefore bewildered and rather alarmed when she wheeled me into a private room with a bed in and was told to get into the bed. I had expected to be taken to the haematologist’s room, where questions would be asked, blood tests done and, eventually, in time the infection identified and antibiotics prescribed. What did happen was totally unexpected.

My husband and I had gone there alone that morning, and we had parked our car in the hospital car park. As had been pre arranged, a nurse came to collect me and push me to where I needed to be, my husband being unable to do it, as he was in a wheelchair himself. As we waited, in the room we had been taken to, my mother appeared, pushing her shopping trolley which she was never to be seen without. She entered the room in her usual rather detached way, and sat down on the bed. None of us knew what to expect, but I for one was alarmed when a small but authorative man walked briskly into the room, holding out his hand and saying,

“I am Dr. Jalihal.”

I almost felt that we had to stand to attention. He was followed by the nurse in the plastic apron, trying to keep up with him, and whilst he positioned himself on the chair at the side of the bed, she stood with her back to the wall. The plastic apron alarmed me, as it made me think of bodily fluids and all sorts of unpleasant things, but of course, that was nothing to do with me. The most I was going to have was blood tests.

Dr. Jalihal began to ask me questions however, which surprised me as I thought he would have read my Notes. He had no Notes at all and nothing at all in his hands. He asked me to give an account of what had happened to me. I told him the events of the past year. He then sent my husband and my mother out of the room, saying that he wanted to examine me. I was shocked at the examination that he gave me, as it was very thorough and extensive, but I had only gone there to find out what was wrong with my skin. Following the examination he sat down again, having invited my husband and my mother to come back into the room and it was then that the bombshell was dropped.

My mother leaned forwards as she sat on the bed, squinting and listening as she tried to understand what the haematologist was saying to me. He was explaining that I had lymphatic cancer and that all the lymph nodes in our bodies are like a daisy chain, all linked to each other and that the cancer travels from one lymph node to another. That was exactly what had happened to me, and I would need “some form of chemotherapy.” There was silence in the room as Dr. Jalihal gave us time to take all this in. I decided that this was all unreal and I was going to ignore it. I would go home and forget all about it and I most certainly would not have chemotherapy treatment. I suppose the technical term for this reaction is “being in denial.” No one quite knew what to do. Everyone was simply in shock. Dr. Jalihal went to my husband in his wheelchair, saying,

“You will have to go into Respite care.” My husband explained that he was capable of looking after himself and did not need Respite care. This was accepted. My mother was by now on her feet, moving in a detached way around the room. Eventually we were allowed to leave, and a nurse came to push me to the car in my wheelchair. As we were going down the corridor I burst into tears, and the nurse said to me,

“We get people better in here.”

Getting better was nowhere in my thinking at that stage. I had not yet got past the news that I had just been given. I could not even think into the future. This was the one and only time that I cried. Soon we were at the car and the hot sun was beating down onto my raw bleeding skin, and I panicked as I needed to get out of the sun and that could not happen quickly as my husband had to deal with the two wheelchairs. My arms were bare, and they stung in the hot sun. Eventually we were all in the car, however, and we all, including my mother, returned to our home. Once home, no one knew what to do. My mother and I went to sit in the living room, whilst my husband went into the kitchen. My mother telephoned my aunt and gave her the news saying,

“We are all crying.”

It was not true. My mother never cried and I was not crying. However, I went into the kitchen to find my husband on the telephone crying to his sister and saying,

“She’s half of me.”

I had never seen my husband sob like that before, but I could not feel anything at all. I was simply observing everyone else. To me, everything was normal. I had cancer, but so what. It was just one more thing in my life to endure. I was used to enduring. I was emotionless. My mother soon asked to be taken home, and my husband did what we often did. We went for a drive.

I do not remember much of what happened after that until I had to go to the hospital again. On this occasion I was meant to be having a biopsy done. This consisted of the taking of a lymph node from under my arm. Once again I had been put into a bed, and I was being wheeled, sitting up in the bed, along a corridor to the room where the biopsy was to be done. Suddenly we spied Bernard, the deacon from the Catholic church which we had been connected with in the past. I felt excited to see Bernard, and I shouted out to him as I waved,

“Hello Bernard. I’ve got cancer.” I said it as though I was announcing the birth of a baby or something. I was so excited to see him, and I was waving cheerily at him as I shouted. I was smiling and he smiled back.

In the event, the biopsy was not done, and was returned to the private room. Dr. Jalihal decided that the biopsy would be done under a general anaesthetic as he wanted a larger piece taken out of me. I was sent home to await my appointment to have the procedure done. I never saw nor heard from my mother again for a very long time.

MOTHER’S BIRTHDAY AND A LOST DAY

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Yesterday was my mother’s birthday. Of course she is dead now. Died in 2019. It was strange though. It hit me like a brick. I remembered how it used to be on her birthday. We never firgit ut. Not that she ever wanted a lot for it. But despite all of the horrible things she did to me, we tried to make the day special for her. Sometimes we would take her out for a meal, and sometimes we would go to the ice cream parlour or just go to the seaside. Those days were not too bad with my mother. But yesterday I was taken with th hugest attack of grief. I wanted only to go to the crematorium and take a bunch of flowers for my mother on her birthday. Not that she is in there. Oh no. She is tied up in seven carrier bags in my sister’s bedroom drawer. But my Dad and my grnadmother are scattered there with no plaque or anything but we know they are there. My Dad is under a Lavatory Tree. Oops sorry I mean a Lavateria tree. He loved to call them Lavatory trees but the crem staff chose that spot because no family member was there and so they just did their thing, choosing the spot. They could not have chosen better. My Dad would have approved. Anyway, I wanted to go there. After all this Christmas show I wanted at least to be near my dead family for it is all I have. Strangely I felt an overwhelming sense of love for my mother and I wanted to put on the flowers ‘Ilove you.” Stupid am I, or what? Oh well. I did not do it. I just spent the day remembering and feeling overwhelmed by grief.

So many memories came back to me. Good ones, bad ones. The lot. A whole day was lost. By the evening I was in a terrible state. Then this morning I awoke with a particularly bad memory of her. After I had cancer and while I could still walk with two canes, I used to go and see her sometimes. Not often but just sometimes. My sister was often there too. She had a little low settee on which I sat. My body even then was very painful and as I got up to leave a kind of groan would escape from me. My sister told me one day that my mother had said to her one time, “ugh, and that noise she makes as she is getting up.” Obviously my mother was saying awful things to my sister about me. My mother always was repulsed by me but I never knew why. But that memory came back to me this morning as I was getting out of bed and I thought to myself why did I bother yesterday. It is strange but we can long for family so much, especially at Christmas and New Year and we try to imagine that we did have one when in reality we didn’t. A very painful day yesterday. And a lost one.

#FOWC – Tone

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https://fivedotoh.com/2022/12/27/fowc-with-fandango-tone/

It was the day after Christmas. Jemima had been ushered by the vicar into his living room. She had not been expecting it. She and Ben had just moved house, and the vicar had invited her down to the vicarage to tell him how the move had gone. The idea was that she would go to Evening Prayer at the church first, and then go and talk to him in his study. She had been in there often, and they had had many conversations in the past. He said he found her refreshing, and she found him interesting. So when he invited her down, she was more than happy to go. The one thing that she had not expected though, was to be guided into the living room, his hand firmly on her shoulder, where his wife and another man were sitting. The room had a wonderful Christmas glow about it, and on the coffee table were lots of Christmas goodies. It was, however, as if she had been expected by his wife. She was welcomed profusely, and given a sherry, which she did not really want. Prior to taking her into the living room, the vicar had taken her car keys out of her hand, dropped them into her open handbag, and then put her handbag into the little room off his study that acted as a safe. The door to the safe was then locked.

The conversation in the living room was convivial. It was all very cosy. Until Sylvia disappeared, and then returned with a nightdress, dressing gown, soap, flannerl, towel, toothbrush and slippers. As she placed them on Jemima’s lap, Jemima became alarmed. What on earth was going on?

Suddenly the phone rang in the vicar’s study and he went to look at it.

“It’s Ben,” he said, when he returned. “But we needn’t bother about him need we.”

The whole TONE of the conversation then changed and Jemima felt a cold chill go down her back. She wanted to run. But there was no way of running. The front door was locked and she knew she was trapped.

WILD WOMAN

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Wild woman
You ride on the clouds
Untethered
Now you have broken your bonds
The reins that held you
Now you are free to roam the earth
As fire
Waterwind
One with the elements
You are like thunder
Striking like lightning
Sharp as a sword
Boundless
Eternal

TODAY IS ANOTHER DAY

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Well, today is another day. A day the same as all my days. Yesterday was torture and I am glad to see the back of it. On Christmas Eve I attempted to be happy and to join in the general feeling of wonder and joy. I put a livestreamed Mass and Carol Service on, and knew full well that all those words could mean nothing for me. However, I tried to be happy. It was full of mention of getting together with families etc. I tried to ignore it. Then on Christmas Day itself I awoke with a feeling of horror and isolation. It was awful. I attempted to post in here and not to let on how bad I was feeling. But my body was experiencing a lot of pain. We tried to listen to audible books but I could not concentrate and on a few occasions I felt as if I was going mad. It is just such a terrible time for me. I could not wait for it to be over. Even food was difficult as I am unable to eat properly because of the damage the chemo caused in my face and mouth. So I could not take pleasure in that. By the evening I truly thought I was going mad. So so so alone. I knew that the New Year would bring no change as well. The only thing I am looking forwards to is writing and finishing my book. Thank God I have writing for if I did not have that I would have nothing at all. Today is yet another day to be got through. People are still in holiday mode and family mode. We just try to struggle along. And this might all sound a bit of a killjoy but it is as it is for us.

RELEASE ME

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Release me from this body
That ties me to this hard bed
Release me from this blindness
That cuts me off from the world
Take from me my pain

On this Christmas Day I cry
Not for the lack of persons
But for what I have become
A tangled web of pure pain
Unable to move

Today I decide to go
To that land beyond the hill
A land of no more sorrow
Where pain can never be known
That land beckons me

Will it be dark there or light
Will I be bathed in water
Will my tears be wiped away
Will I rest eternally
Soon the answer comes

AN ALTERNATIVE CHRISTMAS STORY

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It had been dreadful. Two days ago I had been in the chemotherapy unit at the hospital. It was December 23rd, and the Anniversary of my grandmother’s death – the only person who had ever shown me any real love in my life. I came from a violent family, and many were the times that I had been shipped off to my grandparents’ farm in the dead of the night. My parents would have been fighting, and often there was breaking glass and clashing knives. I had spent my life, as a child and teenager, expecting one of my parents to be dead on the floor. I lived in fear. One time, my father put his hand through a plate glass window, and there was blood everywhere. One time he came at us brandishing a knife, and I thought that was it. We would all die. I huddled in a corner, waiting to die.

On arrival at my grandmother’s, I would be taken into her big feather bed, and for a time I would feel safe.

On December 23rd. 2013, I did NOT feel safe. I had been going through chemotherapy for six months, and it was always a horrible experience. I had always thought that cancer patients were given love and care in the hospital. This was not my experience. The staff were rushed off their feet, with too much to do, and not enough equipment. On one occasion they had even run out of the pump that pumped one of the drugs into me in a certain way, at a certain pace, which had to be very exact. The nurse had to do it manually, watching the pace at which the drug went in, all the time. One slip, and it would have spelled danger for me. Often, they did not even have pillows on which to rest my arm whilst the drugs were going into me – a process which took four hours. I had dreaded this day, knowing that all the nurses would be in Christmas spirit mode, and that I would be at even greater risk.

Christmas produced such bad memories for me anyway. Memories that I could not even bear to write down. Always, at the approach of Christmas, I would start to shake, my body would start to collapse, and I would feel as if I was going to be sick. Christmas Carols engendered a feeling of dread, and often I would feel as if I was going to pass out during them. I don’t know how I always, in the end, managed to hold onto myself. The feeling of suffocation produced an intense fear reaction in me, and I would want to run away. And here I was, in the chemo ward, trapped. There could be no running now. I could not even get out of bed. The music played while the nurses did their work, with all the jollity of the season. I was shown photos of grandchildren dressed in Christmas hats, on the mobile phones of the nurses. Babies, too. My mother had beaten my babies out of me. She had a deep hatred of babies, and had attempted to abort me – something that she constantly reminded me of, describing in great detail the blood running down the stairs of the flat that she and my father lived in. I survived, much to her displeasure. And now I had cancer – a very advanced cancer – and her opportunity to exterminate me had come again. Telling me that the family could not cope with me, she told me in no uncertain terms that I should relieve them of the burden by going to Switzerland to be exterminated – kindly. This, she never let up on. I should die. Out of consideration for the family. And now it was Christmas, and every horrendous memory of my childhood came back to me as I looked at the photos of all the nurses’ grandchildren in their Christmas hats. I should have died, and my own babies were dead. And I should most certainly die now.

The music played on in the chemotherapy ward, and the nurses were wiggling their bottoms in time to the music as they pumped drugs into people.

I had to wait. The pharmacy had not got everyone’s drugs ready on time. I was informed that it would be at least a two hour wait before they could start administering the drugs to me. Inside, I groaned. I began to feel fear. I began to panic. I was trapped. Trapped in Christmas! There was no running now.

I was in a tiny cubby hole at the end of the ward, as I had to be in a bed because I was so sick. Everyone else was in a chair, having their drugs administered. I was alone. Alone and trapped. But I could still hear the Christmas music, and see the wiggling bottoms. I needed to go to the toilet. I shouted for the nurses to bring me a commode. I was not heard, and I began to panic. I shouted louder and louder. Eventually I was heard, but was told to wait. They were too busy. I waited. The need to have a commode grew and grew until I thought I would burst. The Ward Sister came to me, and explained-kindly – that they were all busy, and to do it in the bed.
“It’s not a problem to me,” she said brightly.
“I don’t have to wash the sheets.”

I was aghast. And I most certainly was NOT going to do it in the bed!

In desperation, I got out my mobile phone, and rang my husband.
“I WANT TO GO TO THE TOILET,” I yelled.
“THEY WON’T BRING ME A COMMODE. GET ME A SOLICITOR HERE.”

As if by magic, a nurse appeared, telling me she was going to get the commode. Job done, I attempted to relax back. But this incident made the panic set in even more. A nurse passed by the end of my bed. I had had enough. I should be dead anyway, and in that moment I made the decision not to fight any more. I called to the nurse, and asked her for the papers to sign to discharge myself. I knew that this decision would end my life. I would receive no more chemotherapy and I would die. It mattered not, to me. I would be out of my suffering, and out of the abuse that had plagued my life. I would never have to see Christmas again. And my mother would be happy. It was the best way for all. My husband was exhausted, and he would no longer have to spend many hours of the night applying ice packs to my body, to try to quell the horrific itch that went from head to toe. At last, he would be able to sleep.

The nurse came to me, and, smiling, she said she would get me the papers.

Time passed, and no papers arrived, and all the nurses were ignoring me. Eventually, the Staff nurse arrived. I repeated the request for the papers. She smiled and went away.

The Christmas music played on. I was offered chocolates – the nurses had a big box of chocolates that they were sharing round. I could not even eat a pot of yoghurt, never mind chocolates! I wondered where my Discharge Papers had gone. Why were they not coming? This was MY decision, not anybody else’s, and I had the right to make that decision. They could not hold me prisoner like this. The panic within me rose even more.

Ultimately, my chemo drugs arrived. They had, as always, had a job to get the cannula in, and it had taken seven attempts. It hurt as the drugs went in. The last drug to go in was dacarbazine – one known to cause intense pain as it went in. I always dreaded the moment when it would start to go in. I was told that even grown men cried as this drug was administered. I never cried once – I determined to tell the nurses jokes as it was going in. Occasionally I would start talking really fast, as the pain increased. It took half an hour for this drug to go in, but on occasions the pump complained, and worked only in fits and starts – it would take a hour for the drug to go in. Despite my fear, it was Christmas, and I had to do the jokes. Inside I felt as if I was in hell.

It was late that evening that I finally got home, emotionally and mentally drained, and physically exhausted, despite the fact that all I had done was lie on the bed. But I had not been able to escape Christmas and all the horrific associations and memories. And the worst was yet to come – Christmas Day itself. I knew that my husband and I were going to be completely alone – with our memories of families who had cast us off, and lost babies. For myself, the memories were worse than I could ever dare to describe. We knew that most people were going to be with family or friends, and we had no one. My husband would continue to struggle to look after me – many times during the last months, he had fallen, trying to get any food at all to me. He too was disabled and in a wheelchair, but in the house he had to walk on crutches. It was a fearful time, for if he broke anything when ge fell, as he had done so many times in the past, we would be sunk. On Christmas Day we knew there would be no one to call on for help. Everyone would be ensconced in families, and my family had refused to come on that day. It had been suggested so many times that I should die, and as I contemplated the future for my husband and myself, I felt helpless and hopeless. He, too, was losing it somehow. Neither of us had any strength left. We talked, and we had a pact that on that day, we would both take some tablets, and without any more ado, we would both be gone. Hey presto – the end to our problems and everyone else’s as well. The worst thing of all was that we had no children – our babies had been killed. We had no one.

Somehow or other we found the strength to get through that day. I survived it, and I survived the cancer. But we are still alone – and we still have our memories. It is almost Christmas again, and we will have to endure Christmas Carols, and talk of families around dining tables. We will struggle to survive on that day, as we do every day. For us, each basic thing that we have to do, that may take two minutes for everyone else, will take half an hour. We will be exhausted.

And yet – I am glad I survived. I am glad I fought in the end. The only thing I wish is that we were not so alone. That someone would comfort us in our pain. But no one knows it. They could not – not unless they could walk a mile in our shoes.

HAPPY CHRISTMAS

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As the front door closed yesterday and our new cleaner, Nicky, left, I felt a sickening knife in my stomach. I knew that, for days on end now, we will see nobody and that no one will phone us, and that there is no one for us to ring. It was as if a silence was smothering me. No one to call in an emergency. No one to wish Happy Christmas to. Just nothing and no one. We are ignoring Christmas. We have no tree up, no decorations, and are not doing any special food. We would love for this to be different. For the opportunity to just say Hello to somebody. But this is as it is. I worry for my husband after his fall. But we can do nothing. It is so hard to believe that, after my very full life, it has come to this. I still have my sense of humour though. And I shall still be coming in here. I just have problems saying the words ‘Happy Christmas.’ But anyhow, I do wish you all a very Happy Christmas. And if you live in the U.S. and you are hit by the terrible storm, I hope you can keep safe. What a terrible storm this is. Hoping you are all ok.
Lorraine xx

HAPPY SPACESHIPS

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This happened a few years ago but is still relevant

I was in a spaceship! Yes, you heard it right. I was in a spaceship!

There we were, in our usual place – the place where we go every afternoon. It is a very isolated place. We sit by an old wooden bridge that goes over a brook, and listen to the birds. It feels very wild, especially when what seems to be thousands of rooks fill the field, and start cawing. It happens every night, just around sunset. They fly in, gather in the field, sit cawing fairly gently for a while, and then quite suddenly they all fly off together in one big black cloud, making enough noise, it seems, to wake the dead. It is quite a phenomenon. We know that they are going home to roost.

Yesterday, we were sitting there in our car as usual. It was a dreary, rainy day. All around us, Christmas was happening. But we are in a different world. We have chosen to abscond from Christmas. Firstly, our health cannot deal with it, and secondly, it has such terrible memories and associations for me that I prefer to forget it, as much as possible.

It felt strangely eerie yesterday. There were we, in our own world, disconnected from all that was going on around us. A peaceful world. Alone with nature. But suddenly, my husband saw a strange sort of light in the sky, on the horizon. Well, actually, it was kind of just a vague lightning of the sky. He could not work out what it was. It happened a few times. By now, it was almost completely dark.

Mystified, we decided it was time to leave. My husband started up the car’s engine, and drove very very slowly around in a huge circle, to get us positioned to set off up the long narrow road that leads to the nearest village. Quite suddenly, I felt I was in a spaceship. I could see nothing. No trees, no landmarks, no roads, NOTHING . I was just aware of the movement of the car, and I felt as if we were setting off in this huge spaceship!

I am blessed. I can see nothing. I cannot walk. But I get to be in a spaceship.

Happy Christmas everyone. And may alk your spaceships be merry.

NEW WORLD WAITING

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Stable
You gave shelter
When there was no one there
Who would make room for a woman
With child
Today
There is still no room at the inn
For those untidy lives
That do not hit
The mark

Make room
For untidy
Ones who beg for mercy
For in truth they may be angels
Lighting
Your path
Angels do not always have wings
But tangled hair, no shoes,
Appearances
Deceive

Judge not
Those whom you see
Who do not look the same
As you, who walk the streets begging
One day
You too
May find yourself in that dark place
May there be a stable
To shelter you
Give warmth

The world
Is untidy
Littered with lives gone wrong
Upside down people challenging
The right
Way up
Ones who really are upside down
A new world of mercy
Beckons us all
Greet it

YOU WILL BE REVIVED

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The tree is stripped now,
Ready to rest,
After giving of its all,
Now it stands there in its stark beauty,
Exposed, bare,
Now no birds can feed,
Nor rest hidden in its leaves,
It has nothing to offer,
Except its stillness,
Its quietude,
Saying, “I’m still here,
But my surface beauty has gone,
I no longer hold secrets within,
All that I am you can see,
Yet in my starkness is my real beauty,
For it speaks the truth,
In sharpness,
In directness,
Now you see my essence,
That still through the cold and the dark,
Will survive,
And with my strength,
One day I will bear leaves again,
And fruit aplenty,
Give of my abundance,
And like me,
You too will survive,
And bear fruit in abundance,
But now is the time to rest,
Just rest,
And you will be revived.”

BOO HOO TURKEYS

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When I lived in Derbyshire I had a friend called Brenda and often I used to pick her up from her isolated farm up on the road from Buxton to Macclesfield and we would go to another farm where they had diversified and opened a kind of small restaurant. We would go and have a jacket potato or something and have a nice chat with the farmer’s wife who ran the restaurant and then we would go and have a look around the farm at all the animals. One day not too long before Christmas, we went to look in a massive barn, and in there were thousands of turkeys. Every one of them would soon be killed for the Christmas dinner table. They were so friendly and they came to us an nuzzled us. My friend exclaimed with tears in her eyes,

“Oh you turks.

I often think of Brenda at Christmas amd those poor turks.

I HOPE I HAVE NOT DONE SOMETHING STUPID AND OFFENDED ANYONE

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I have been worrying because in my efforts to respond to your comments myself without help, I have sometimes not known what I have done. Whilst my voice over does read things to me, it is really hard to find the Send. Button after I have typed in my reply. There seem to be a lot of comments appearing below the one I am responding to, and I think I might sometimes click on the wrong thing. Not being able to see, I do not always know what it happening and sometimes I might respond to someone’s comment in another person’s box by mistake. It is so awful when I think I might have done that, and I can only apologise if it has happened to you. One day I will get better at this. I love your comments so please don’t feel that they are a problem to me as I will always get aroung to them soon. Thankyou for all your patience xx

THE GREAT “LIE”

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This is Lorraine’s husband posting, she has allowed me to use her blog to expose the system here.

People seem often think that Social Services in the UK are the universal providers of support to those mentally and/or physically unable to care fully for themselves. There seems often to be a belief that they have available to them such care provision as is necessary. The truth however is that they are simply facilitators whose purpose is to establish what is required and then to supply lists of companies from which the “client” selects a service provider for their needs. The is no guarantee that any of the companies listed will have any staff available or even vacancies for new clients. Social Services role then changes to a process of deciding how large their contribution towards cost will be, or indeed if they will pay anything at all.

The provision of care relies on the person in need having the stamina to ring round multiple companies searching for possible providers, facing always the possibility that none have availability to assist, which is the usual response. We were lucky to find someone for 3 hours a week, and it was not a company from the Social Services list. It took over 2 years of trying to find someone.

MY BLOG AND ITS ORIGINAL PURPOSE

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I think that I have said a few times that the original purpose of my blog was to provide a platform for my poetry. It has morphed of late into more than that. Sometimes life gets in the way, and deep feelings come out. That is what has happened lately here. I never intended it to be a rant about Social Services or a rant about my fear and our position. But just sometimes things become so pressing and life so precarious that it spills out into this blog. I so appreciate everyone’s kindness. It so often lifts me when things feel very black. Just your kind words help so much. There is something to be said for letting it all out lol. I still do not want to make this a blog that is primarily for that though. I want to simply post my poetry and my stories and one or two challenges. I want to post bits of my books that I am writing just to see if there is any feedback about what I have written.

Please forgive me for ranting and thankyou so much for your kind responses. Xx

MY CHRISTMAS FEAR AND SOCIAL SERVICES

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As Christmas draws even nearer so my fear rises, especially after my husband’s fall yesterday. We have absolutely nobody to call at all. Everyone and everything is shut down and will be until after the New year. Nicky, our new cleaner cum personal assistant will come on Friday morning for three hours and then that will be it. I dread that moment when she leaves. My brother who is no good at all, as you all know, is refusing to answer his phone and it is not that I want contact with him really but he should be there in an emergency but he will not be. There is absolutely no one in this world whom we can contact.

My husband’s fall yesterday has frightened me and we have been trying to analyse what happened and he says he had not realised how tired his legs were after clearing up some rubbish at the side of the house from his wheelchair. The constant bending put pressure onto his body. So he just got up onto his legs without thinking. We have agreed to put some more grab rails in the hall and into the bathroom area. But that will not get done until into the new year as all handymen are taking time off until the new year. He will make sure now, that he does not get up onto his feet unless he has a walking frame to then hang onto. It is scary, I know.

The last time he fell, in the bedroom, we contacted Social Services and they have a department that is meant to deal with safety in the home for people like us. However, they kept saying that they had put us onto the end of the queue and that we would have to wait months to get them out to look. This has proved to be true. The Re Ablement Team simply gave my husband the names and phone numbers of handymen and told us to get on with it. Then they closed our file as having dealt with it. They had not dealt with it. But this is our country at the moment.

Our Social Care systen is broken. There are people dying because of it. There are people struggling every day. The other day we read of a lady in a Care Home who fell onto the floor and broke her hip. She was just left on the floor for twenty five hours before the ambulance men came for her. They told the Care home to look after her, but they were too busy with other residents as they were short staffed. We have a crisis in our Care Homes at the moments with staff leaving and staff sickness. Many have been dismissed because they refused to have the Covid vaccination. Two hundred in our town refused the vaccination and so were dismissed, and our Care homes are on their last legs. They cannot find a space in Care Homes either, for people leaving hospital who need to go into Care. So they are taking up hospital beds and they have nowhere to go. The hospitals are overloaded and there are no beds even for emergency cases. Relatives are being stretched to their limits. I have heard of some horrible cases just lately.

All of this makes me very very afraid. We are ok and can look after ourselves if things are safe. My husband can cook and so we can eat. We now have this new cleaner but only on one day of the week. But we manage. I just feel so upset at my brother because he refuses even to be there in an emergency.

Christmas will be full of fear for us but I guess we will get through. If only we had family and friends.

SO TIRED. HUSBAND FELL AGAIN TODAY

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My husband fell again today. He had just been outside in his wheelchair to put some rubbish in the bin, and had come in again. He was in the hall, and wanted to visit the bathroom. The door to it is in the hall but he cannot get his wheelchair in there as it is too big. He got out of his wheelchair and held onto the door but his legs just went. He was on the floor. I was on the bed upstairs and I heard him go. I was petrified. Once he is on the floor he cannot get up again. I was worried in case he was badly injured. However, he managed to shuffle along the hall floor on his butt and then pull himself with difficulty onto the bottom step of the stairs. He sat there for a while until his strength came back a bit and then he got his butt up onto the second step. Then he could pull himself into a standing position. He then sat on the chair of the stair lift.

It was so frightening. This is how we live. Constantly frightened. I am so tired now and having trouble concentrating. Hubby is ok and not injured but shocked.

BIRD

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Bird
You fly
With such ease
High in the sky
Wings beating strongly
You glide above the earth
The sunshine warming your wings
Nothing will stop you from rising
My heart thrills with the wonder of life
And know that soon a new year is dawning

WHEN YOU THINK YOU HAVE LOST THE LIGHT

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When you think you have lost the light
And the darkness envelops you
Remember that once you had sight

When the arms of the dark hold you tight
And there’s nothing that you can do
When you think you have lost the light………

……..the pain of the darkness may bite
You’re not sure how you can get through
Remember that once you had sight

The sight of the eyes was not quite
The sight that your heart led you to
When you thought you had lost the light

You saw in the dead of night
With a clarity given to few
Remember that once you had sight

Let not the dark you afright
For it taught you to see anew
When you think you have lost the light
Remember that once you had sight

I KISS YOUR FEET

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As I stand before You, I kiss Your feet,
In that blessed moment we are one,
In suffering sore we now each other meet

In the darkness of our grief we the other greet
Yet in the midst we sing our heartfelt song
As I stand before you I kiss Your feet

This darkness shines with light in scorching heat
Searing my soul , the fire of love burns up all wrong
In suffering sore we each other meet

Oh joy unspeakable that nought on earth can beat
My Love and I join with the happy throng
As I stand before You I kiss Your feet

One day I will take my glorious seat
In that New City where I shall belong
In suffering sore we each other meet

So let me cleave to You my Love so great
Until my time on this dark earth is done
As I stand before You I kiss Your feet
In suffering sore we each other meet

WALL

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I will speak to the wall
Wall, I know you are there
Solid
But you can’t speak
You don’t have feelings
I can hit you
And you wouldn’t know
I could scream at you
And you wouldn’t hear
But I suppose I know you are there
Not busy
Not scurrying
Just standing there
Being a wall
The world is a wall
It does not hear me
I can scream and cry
But it does not hear
It is too busy
Too too busy
At least you stand still wall
Immoveable
Just like the wall of silence that I meet
There were people in Bethlehem
Who were outcasts
People who were not allowed to enter the city
Or the town
Everything had to happen outside the walls
Even crucifixions
Even maybe births
In the deserts
Where no one would come near them
Shall I ring my bell
Shouting
Unclean unclean
We are told
That God loves us
That we are all as one
Made to be with others
That is our nature
Made in God’s image they say
Where are you wall
Have you gone too
I suppose there is always the depths of the sea

I DREAM TONIGHT

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I dream
Tonight of light
As yet unseen to shine
Into the unknown tomorrow
The gate
Opens
To a new world shining with stars
To guide us on our way
Pierce my darkness
Tonight

In dark
I see more light
Of a different kind
Only visible to my soul
I see
With eyes
Wide open to another realm
A shining place to be
Alone I sing
My songs

COME

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Paths stretch
In front of me,
Now I have reached a plain,
Wide open space, a new path calls
“Come now,
The scenes
Here are different, and now, once more,
I will lead you, follow
The voice that calls,
Come child.”

DIARY ENTRY – A Pity Party

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Christmas is now wrapping itself around me like a plastic bag that goes over my whole body and gradually it is tightening and tightening until it smothers me. As each day goes, the pain gets worse. The memories. The abandonment. The rejection. The longing. It is turning into fear.

We will receive no Christmas cards. We will receive nor even have the ability to make phone calls. There is no one to phone us and no one for us to phone. We are very very aware of preparations for Christmas going around us. We even had a problem getting food deliveries as people had booked all the slots and you had to book early for Christmas but we didn’t know. We are alright for food but it really drives it home when we are told there are no spaces left because of Christmas. Christmas is something that cannot be avoided even if you want to. Everything is affected by it.

As many of you know, my brother and sister totally rejected us after my mother’s death. We now receive no phone calls from them and they would not answer the phone to us. It hurts. It has been said that we are better off without them, but true though that is, we have no one else.

However hard I try to not let it affect me, it does. And I keep going back in my mind to when things were different. Whilst my mother was alive, we did at least give each other gifts. Nothing much, but my brother and sister and my mother would have a gift to open from us, and we would have one from them. It was not so much the gift that mattered, but the contact.in the afternoon it was routine for us to ring my brother and thank him for the gifts. Also we would ring my mother. Now, there is no one to ring.

We can plan, all we like, to ignore Christmas, but the pain is still ignited by the things going on and being shoved in our faces around us.

Even if there was an emergency, we have no family or friends to ring.

It might be thought that maybe people have rejected us because we are not very nice people, but that is far from the truth. We are fun to be with, and all through our marriage we have had people who would have been alone at Christmas. Often we would have more than one. But now that we are alone there is no one.

My husband and I used to attend a Catholic church on a Sunday eveing because I played in a folk group for the Mass. i loved doing that, and we made many friends or so we thought. We were part of it and it was lovely. We have asked if one or two of those people might visit us now, since we are unable to go anywhere at all. This simple request has been ignored.

This might sound like a Pity Party and maybe it is, but the pain and fear are growing and growing. I tell it to go away, but then it comes back again. I hate it. My husband has lost his speech due to his post polio syndrome, and he can only string together two or three words. We cannot have a conversation. It is really hard. We cope. But at Christmas there will be no one to call on. Not that any other day is any different, but it feels worse at Christmas.

So that is my Pity Party. I will try to be happy again now.

#FOWC – Beg

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https://fivedotoh.com/2022/12/18/fowc-with-fandango-beg/

My sweetest love I BEG thee now to come
Into my arms that wait so patiently
My darling I am so alone undone
I long this night for thee to come to me
I long to kiss thy lips so plump and full
Caress thy face and see thine dark eyes dance
Without thee my sad life is oh so dull
Oh come my darling let us take a chance
I promise thee that I will never stray
To you I will be faithful while life lasts
I need you oh so much to thee I pray
Let us not remember sad times passed
Come now and fill my arms with thy sweet love
You have my promise I will never rove