October 2006, after nearly twenty years as a teacher, I had started my own business and it was booming, so much so I decided not to bother with the routine mammogram appointment for that day. However, my last client of the day cancelled so I decided to keep the screening appointment. I was breast aware and knew there was nothing to worry about, it would only take a few minutes.
A few weeks later I arrived home to find a letter asking me to attend for further screening as the first one was inconclusive. Being a positive person I saw this as an opportunity to make sure everything was okay. After a variety of tests and a week’s wait my husband, daughter and I returned for the results. Within the first few minutes I was being told that I had Ductal Carcinoma In Situ or Pre-Cancerous Cells and would need a mastectomy. It was all very clinical and cold but we left there feeling grateful that the doctors had found this ticking time bomb which has no visible signs. The next day we travelled to see the surgeon who assured us that a mastectomy would be “all that was needed” and how I should think about breast reconstruction – I couldn’t take it all in and was beginning to feel a bit scared as reconstruction would mean a 6 hour operation instead of the mastectomy which was about an hour.
We found ourselves travelling again in the January cold and dark to visit the surgeon for a follow up after my breast had been removed a couple of weeks earlier. The surgeon came into the waiting room and called my husband and I into her room where there was a student, a psychologist, a breast nurse and her. She asked if I minded and of course I said no – I was feeling intimidated. She announced that I did not have DCIS but indeed had Breast Cancer and proceeded to talk about Chemotherapy, Radiotherapy, Drug Therapy – I looked at my poor husbands face we both said very little out loud we were in shock and just wanted to get out – there were 6 people including us in that room when we received this life changing news.
Two weeks later my daughter and I attended the hospital at 10am to start chemotherapy. I was told by a new doctor that it would not go ahead because there was something suspicious on my chest x ray and that I would need an urgent CT Scan – I asked what time I would have the scan and was told there were no slots available. After a very emotional reaction to this I was told they could offer me one at 8pm that evening – we travelled 210 miles that day so that this could happen and waited a week before returning to the hospital for the results. That week was never ending as I imagined all sorts of scenarios, at the same time being aware of precious time slipping by and wondering what opportunity this was giving the cancer to do further damage. The day finally came when my daughter and I returned to the hospital where the news was positive. Soon the nurse appeared and took us to another little room. He told me that I would need a line inserted into my chest as the veins in my hand were “useless” for inserting the type of needles necessary to administer chemotherapy and that it had to be done with a local anaesthetic. He thought it would help if I spoke to someone who had a Hickman Line and took us to another part of the hospital to speak to a young girl. I can’t remember her name but I will never forget her, she told us she was 32 years old and was undergoing treatment for secondary breast cancer which was in her bones and her liver – she talked about her little boy. We left the hospital and went home having still had no chemo.
I can’t describe the hopelessness and despair I felt after seeing that young girl. We didn’t talk much on the way home but I had made a decision – I was never going back to that hospital and would not have any further treatment I had decided to give up.
I was in the sitting room the next morning when my community nurse arrived smiling. She was like a breath of fresh air and asked how things went. I told her my decision that I had had enough. She held my hand and spoke to me quietly and asked if I would tell her what had happened. It was the first time someone had listened to me and was genuine, that someone had called me by my first name, she let me talk without looking at the clock without using clinical language, and she let me tell my story. In less than a week I was admitted to another hospital had the line inserted under general anaesthetic and had my first chemotherapy treatment, I never looked back after that.
That community nurse saved my life for without her compassion, patience and respect I would not have changed my mind. She gave me back control and confidence.
Penny Halliday is a Non-Executive Director for NHS Dumfries and Galloway.