Thursday, 31 March 2016

Silent Tears, Hidden Pain ~ Nell

It came to my attention today while scrolling through Facebook that a wonderful and brave lady called Holley Kitchen had lost her battle with breast cancer. I watched the video she made at age 39 years when she was diagnosed with metastatic breast cancer. This had a profound effect on me and I felt that I wanted to share my own story.

In March 1989, I was working as a nurse in the hospital in my home town. I was 39 years old, married with two children. I had been a nurse since I had been eighteen and I really loved and enjoyed my work.

On the 28th February 1989, while I was getting ready to go on night duty, I felt the lump in my left breast. It was central, right on the nipple. I didn’t panic, or scream, or shout. I called my husband upstairs as I needed to give his opinion - was there a lump or not? It felt hard and fixed and was the size of a 10 pence piece. My husband didn’t say a word. He just nodded and went back downstairs while I sat on our bed with my mind in a daze.

When I presented myself to the GP the following morning, he examined me. He didn’t think that there was anything to worry about but said he would refer me anyway, there was a breast cancer clinic taking place at our local hospital that afternoon. He telephoned and got me in as an emergency. By now, panic had set in and I kept feeling the lump every five minutes or so, willing it to disappear. Obviously it didn’t.

Sitting in the clinic, I began looking around at the other women and realised I was the youngest there. I had nursed many women with breast cancer but never one as young as me. I decided that I didn’t have cancer. I was far too young. This was going to turn out to be a cyst or something. I was going to be fine.

After being examined by the consultant, he decided to take some fluid from the breast and send it to the lab. This was on a Wednesday. I wouldn’t get the results until the following Monday. All of a sudden I was filled with such fear that I could hardly breathe. After a chat with the specialist nurse, I went home.

The days passed slowly. By Friday I was desperate to know one way or another. During Friday evening, the door bell rang. When I answered it, there was the breast cancer specialist nurse and my ward sister. And then I knew. I looked at their faces and I knew I had breast cancer. They were so kind they had come to tell me in the privacy of my own home. Whatever my reaction, it wouldn’t be seen by a clinic full of patients. I just asked what would come next. I was told to come into the ward for admission on the Monday morning. My surgery would take place the following day - March 6th 1989. I didn’t ask what my surgeon would do and he didn’t tell me. After they left, I completely lost all self-control. My husband changed colour and seemed to age in the two hours it took me to calm down. Both my children were out with friends for the evening. My eldest was 18 years old at the time. My youngest was 15 years old and still clingy. I couldn’t turn around without her being there.

Lying awake in bed in the early hours of the morning, I knew I would have to tell them that day. It was then that the guilt hit me. What was I doing to my family? I was about to blow their happy world to bits. I was going to hurt them, to frighten them and worry them. How could I do this to them? I can tell you now, truthfully and honestly, that was the worst part of it all, watching the fear on their faces. Not being able to give them the reassurance that they needed. They were so upset, so frightened and I as their mother had caused it. My husband tried so hard to be strong for me but I could see the fear in his eyes.

When I was admitted to the ward, the Surgeon explained that as the tumour was in the nipple area of the breast, he wanted to perform a total mastectomy, with clearance of the axillary lymph nodes. These nodes would then be sent away for testing to see if the cancer had spread to my axilla (the lymph nodes under my arm). He wanted to take the whole breast as he was worried that the cancer would infiltrate my chest wall.

I was numb. I thought, this is real, this is happening. I tell you honestly, I was terrified. I didn’t ask any questions, in my mind it was over. I might die, sooner rather than later. And in the time I had left, I would rather live my life with one breast. To me my life would never be the same again.

They gave me a sleeping tablet that night. It didn’t work. The fear and blind terror kept me awake. How would my husband react when he saw my body for the first time? Would he still find me attractive? I didn’t think so. How could he? Mutilation was the word I was thinking of. I would be mutilated. I would never wear a swimsuit again. I would have to wear special bras. I cried and cried. I felt so sorry for myself. I didn’t have a positive bone in my body.

Morning came and I was prepped for theatre. Off I went, putting on a brave face for everyone.

You must remember this was 1989. Things were so different then. Today there is a fantastic breast care specialist unit in our hospital, reputed to be the best in Wales. Back then they did not have the facilities they have today.

Two days after my operation, the day came to change my dressings and for me to see the wound on my chest for the first time. When the bandages and packing was taken away, I looked down to see the left side of my chest was flat, with a wound running from my central chest to my axilla. It was held together by black cat-gut stitches and looked very red and angry. And I just looked down and felt nothing. This was the beginning of my trouble. I didn’t feel or show any emotion at all. I just blocked the whole thing out. Big mistake.

A nurse came to the house to change the dressings for a few days after my discharge from hospital. Three days later, when I was in the bath, I asked my husband to come in. When he saw my scar, he said “Was that what all the fuss is over, that doesn’t look too bad.” I went into meltdown, I screamed, I shouted, I cried. All the time stomping around the bedroom, shouting “I have been mutilated.” I collapsed on my bed and cried so much that I didn’t think I had any tears left.

The following day I was back in my shell. I was always smiling, laughing and being brave Mrs Wonderful. Oh yes, everyone thought I was great to come out of my operation full of the joys of spring. Eight weeks later I was back at work. I had the results of my lymph nodes biopsy and the cancer had not spread so I didn’t need any more treatment, just 3-monthly check-ups. When these were due, I would get my hair done and dress up like a model, full make-up on and nothing out of place. I would walk in with a big smile on my face. To them I looked the picture of health, brimming with confidence. Inside I was falling apart. This went on for years.

After surgery, I was given the drug Tamoxifen which I had to take every day and can bring on an early change of life. One of the side-effects is weight gain. In three years, my body image had changed dramatically. I had gained a lot of weight. I looked bloated. My remaining breast grew at an alarming rate, so undressed, I looked hideous. But still, the outside world saw only a happy, smiling, confident person.

Two years later, I had an implant fitted. The pain of the operation was pretty bad but I didn’t show anyone. Now instead of an empty space on the left side of my chest wall, I had a large, round, hard lump under my skin. It did nothing for confidence. I looked dreadful - with one sagging breast and one immovable, hard lump minus a nipple. Still, I pretended I was thrilled with the result and got on with things.

One night, during a night shift, I lifted a patient off the emergency trolley onto the bed and slipped two discs in my lumbar spine which I had to have removed. I was left with nerve damage. I was 49 years old. I never worked again. A couple of months later, I had to have my breast implant removed as it was working its way up my chest wall and was far too high. The second implant was not much better, I was still left lop-sided. Under my clothes I was a mess but I put on my happy face so no-one knew.

It was about this time that I began drinking heavily. I had reached rock bottom. I could not have gone any lower. But I was still dragging myself out of bed every morning and going through my routine. I had a check-list in my head: clothes - immaculate, hair - the same, house - immaculate. I was good, very good. No-one noticed. Not for years. My drinking continued and my health began to deteriorate. I was admitted to hospital to have yet another implant. I even had a few drinks before admission. At least this implant was a success.

By this time I was refusing to leave the house, only going if I really had to. My husband was as loving and supportive as ever. He did all our shopping after work and he didn’t even comment on my excessive drinking. He thought I had bad nerves. In fact I was drinking myself to death. I hated myself, my body was a mess. I put on a huge amount of weight so now my implant did not match my other breast which had grown.

Eventually, it all came to a head. My friend, a nurse, who was visiting noticed how breathless I was. She also noticed my swollen ankles and the next thing, she asked to see my stomach which was hard and swollen with ascites. She rang my GP who came out and the next thing was that I went into hospital as an emergency. The Consultant was amazing. They had caught me in time and as long as I never had a drink again, my liver would survive. It was by talking to my doctor that the true way I felt came out. I had been living a pretend life, and he said it had all started with my mastectomy. Pretending I was okay so my family and friends would not worry. He told me I had never come to terms with it. I hid it away as if it had never happened. 

Looking back, I realised he was right. Not once did I cry or talk to anyone about it. If people offered me sympathy and empathy, I would push them away. Getting out of the shower, it was easy to avert my eyes. When I cried, I did it alone, when the house was empty. Towards the end, I spent a great deal of time alone. Most of my friends stopped calling, my husband was at work all day. By now, my children had their own lives. And it suited me to be alone, I didn’t have to pretend.

I spent three weeks in the hospital, with plenty of time to talk to various health professionals and plenty of time to think. This was 6 years ago and I haven’t had a drink since. I am well and feeling great. I have learned to love myself and my body. I look at my mastectomy scar and think of it as a battle I won. I didn’t deal with my breast cancer at all, I shut it out. It was the worst thing I could have done.

I am 27 years post-op this month. I have come a long way. I am disabled now due to the nerve damage in my spine but I am happy and at peace with myself and my body image. I have got my self-respect back. But most importantly I don’t keep things to myself anymore. No man or woman is an island we all need someone at sometime.


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