IT HAPPENED TO ME:The fantastic work being done by healthcare professionals is often overlooked, says Michele Connolly, who is in remission from Hodgkin's disease since last October. This is her story as told to Fiona Tyrrell
WHEN I was diagnosed with Hodgkin's disease in April 2007 I didn't know what the term meant. Only when the consultant said I would need to talk to an oncologist did I figure out that I had cancer.
Since then, my experiences of the health service both as an inpatient and day patient have been extremely good. It was the first time that I or anyone close to me had a serious illness, so, other than runs to a GP or a dentist, it was my first real experience of the health system.
Overall, I was struck by the sheer experience of the staff, in particular the nursing staff. I received my treatment at St Vincent's Private Hospital. My chemotherapy was in the day-care oncology ward. My oncologist and the chemotherapy nurses were absolutely excellent.
The nurses were expert in the treatment and its many side effects. They were always ready in their busy days to lend an ear and stop for a word - even if it was only to tell you that, yes, unfortunately another vile side effect was normal.
I found a lump underneath my arm on Christmas day. I was not too concerned about it. However, a colleague of mine had died from cancer a few days before. That made me a little more conscious.
I went to my GP to have it checked out. To be honest, I felt quite foolish going to him about it. He was relatively unconcerned about it and thought it was likely to be an abscess or something. When antibiotics didn't clear it he referred me to a surgeon to get it removed.
The results came back a week later. We were so unconcerned about the lump that my husband didn't even come with me to the appointment. The surgeon gave me the blunt news. The lump was much bigger than he expected and I had Hodgkin's disease. My first thought was that I didn't know what Hodgkin's was, but when he said that we needed to talk to an oncologist to find out more it hit me - Hodgkin's is a form of cancer . . . I must have cancer.
Four days later I had an appointment with my oncologist, Dr David Fennelly. He was extremely reassuring and very informative. I got the impression that he had all the time in the world to answer my questions. He told me that it was curable and that I would have a six-month course of treatment.
Prior to the surgery I hadn't really told many people about the lump, but, after the diagnosis, I felt it was important to talk about it. First of all, I knew that I would have to take time off work for the chemotherapy. I knew that, by telling people about the diagnosis, I would get good support.
Secondly, I felt that, by talking about my experiences as a 36-year-old woman, it would heighten awareness about young people getting cancer. It might encourage someone else to make that all-important decision to get a lump checked out.
A couple of weeks after the surgery I started the chemotherapy. I went to St Vincent's day-care oncology ward for five hours every fortnight for six months.
The first three months were not too bad. I had been warned, however, that three-quarters of the way through it would get rough. Someone described it as like "falling off a cliff" and that is exactly what it felt like.
The chemo impacts on every part of your body. I was not particularly nauseous, but it did affect my digestion and I was extremely fatigued. Then there is what is referred to as the "chemo brain". It is like being in a fluffy cloud. You feel dopey and find it hard to concentrate. Luckily, I was never in such a state that I was confined to bed and not able to do anything.
I worked part-time for most of this period. I am a chartered accountant and a partner in a professional services firm. When I was not fit to go into the office I worked from home.
The fatigue really set in at the end of the six months and I had to stop work for about six weeks. At that stage I could not find the energy to get out of bed. People say "sure we all feel like that at some stage", but they have no idea what it's like.
Losing my hair was fairly traumatic. The options were either to get a wig or to wear hats and scarves. Because my chemo was during the summer, I took the decision not to bother with a wig. Then I had to get used to people always taking a second glance at me.
After the six months, everyone around me was elated that the chemo had come to an end. I felt dreadful. It took me by surprise how long it took me to recover. Some of the medications used are steroid-based, so they affect your joints and muscles. Muscles are wasted and joints are stiff.
I go to a physiotherapist every fortnight and I also go to hydrotherapy once a week. My body does not have enough energy or strength to go to the gym. Referral to a physiotherapist after chemotherapy should be an automatic part of the treatment.
My oncologist had told me that the worst of the impact of the chemo would be gone in three months. He said that I would wake up one day and feel much better. He was right, almost to the day.
Having been used to being in contact with medical professionals every three to four days, it was strange not to have anyone around to discuss my symptoms with. Of course, I could have rung the nurses in St Vincent's, and they would have been happy to talk to me, but I didn't want to bother them.
More often than not, when you pick up the paper, you read about people who have had a bad experience of the health service. I can only imagine that to have a bad experience must be horrendous.
I feel sorry for the nurses because these bad experiences overshadow all the good work being done. Nurses are being slated all the time. They provide a fantastic service and don't get as much recognition as they should. The cancer support services, including counselling and complementary therapies, offered at Lios Aoibhinn at St Vincent's, were also excellent.
It was a lifesaver in the very strange world of cancer that you are thrust into. I still suffer from tiredness and I have to be more regimented in what I do in any given day or week. I say "no" to things more.
There are all sorts of glib things I could say about my cancer experience. However, it did give me a wake-up call about the need for balance in my life. I also have a huge appreciation of the support I got from friends and family when the chips were down.
• Readers who would like to talk about their own health experience, good or bad, can contact this column at healthsupplement@irish-times.ie
What is Hodgkin's disease?
Hodgkin lymphoma, or Hodgkin's disease, is a cancer of the lymphatic system. It begins in the lymph nodes in the neck, armpit or chest. Sometimes the cancer may spread to other lymph nodes nearby, or cells may enter the blood stream and be carried to other organs.
The treatment of Hodgkin lymphoma, even when it has spread from the original site, is usually very successful.
Most people can be cured, or their disease controlled for many years.
Hodgkin's is a rare disease and most often occurs in younger people (aged 15 to 30). The first symptom is usually a lump, or painless swelling of the lymph nodes in the neck, armpit or groin. Other symptoms include night sweats, high temperatures, loss of appetite, weight loss, tiredness, itchy skin or persistent flu-like symptoms.
Taken from Understanding Hodgkin Lymphoma published by the Irish Cancer Society