In 1992 I had surgery for lumps in the breasts and shortly after that the pain started, although a cause for the pain was never determined. I've been asked to describe the pain, but I have never been able to. It was so bad that it was indescribable - much worse than the pain of childbirth. It could last 72 hours without a break. From the end of 1997 and in the six months to June 1998, I was getting four days per month with mild pain and up to 26 days of severe pain. The pain affected everybody in the family in the end. I had to give up my work as a psychiatric nurse. I had impaired sleeping, I felt snappish and my social activities were curtailed. I often didn't feel up to going out; the effort would be too much, to sit and smile when you were miserable.
Nobody outside the family, except one or two close friends, knew. We didn't want me to become a martyr. Outside my husband, Colin, who was exceptionally supportive all the time, and my immediate family, it wasn't anybody else's concern. It just wasn't up for discussion. Like me, my husband felt that if it wasn't being discussed it would be easier to cope with. It was never hidden either, but it wasn't dwelt on. I have a 14-year-old daughter and initially we were able to keep it from her, but as she grew older she knew herself that things were not right and she was great because she did understand. There were things I would do when the pain got particularly bad: if I was sewing or reading I'd change my activity, or I'd telephone a friend - not to discuss the pain but to distract myself. My doctor prescribed various drug treatments, ranging from anti-inflammatories to a variety of drugs aimed at controlling oestrogen, such as Tamoxifen (a breast cancer drug), which I tried for six months. None of them had any lasting benefits at all. By April 1993, I had developed more lumps and had segmental mastectomies of both breasts. The pain still wasn't controlled and the various drug treatments continued until 1995, when I was first referred to Dr Declan O'Keefe, a pain specialist at St Vincent's Hospital, Dublin. From our first meeting, I fully believed that he had the answer. He was so positive that I knew that he would keep going until he found relief for me.
He brought me in to hospital in July 1995, August 1995 and October 1995 for various "blocks" (which are like epidurals) to determine if the pain was being caused by nerve damage and if so, where. This led in time to a sympathectomy on the left breast, in which some of the nerves were sliced. It was quite a painful procedure and it wasn't successful. I also had my ovaries removed in November 1996, when I was still in my 30s, in the hope that the resulting drop in hormone levels would help. It was successful for four months and then all of a sudden the pain was back again - just like switching on a light switch. In June of this year, I had leads inserted permanently into the spine and an implantable pulse generator (IPG) placed in the abdomen. I have a handheld programmer - it looks like the mouse for a computer - to switch the pulse on or off and to decrease or intensify the sensation. The IPG masks the pain; instead of pain you have a tingling sensation which you very easily forget about, especially as you go about your daily routine. I have it on 20 hours a day.
I feel like a new woman. The fact that I can get up in the morning and have control of the pain is superb. There's a remarkable improvement in my life. You can see the difference with the way you cope with things. The whole family is much happier. I have a greater sense of freedom because I go and do things that, before, I was doing perhaps half-heartedly.
I'm not as tired and not worrying `will I get through the day without pain?' or `will I get to sleep?' I haven't taken any painkillers other than the odd Panadol for seven weeks. Before the IPG, I was on ever increasing doses of DF 118, a strong painkiller, which had begun to affect my eyes by making the lids very swollen. It's all so new that we are enjoying the moment and looking forward to doing things that have had to be put on the side because of the pain. I've just had my first holiday abroad in six years.
In conversation with Kathryn Holmquist.
The Chronic Pain Association is based at P.O. Box 37, Dun Laoghaire, Co. Dublin.