A STORY THAT HAS TO BE TOLD – part 1

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.