My Cancer Journey by Ameena Hussein – Galle Cancer Foundation

My Cancer Journey

Ameena Hussein

I believe that I received the diagnosis of non-Hodgkins Lymphoma when I was at my happiest and when my life was going really well. I had been married 7 years to a wonderful man; started my own publishing company; just finished building an estate house on our land in Puttalam where we envisioned spending all our weekends, when a health incident put me in hospital. Imagine my surprise, when the intermittent cough I had for six months was diagnosed as a symptom of cancer. I was 42 years old, and had returned to my homeland 4 years ago, to start a new chapter of life based on what I wanted out of life, rather than economic success – when the cancer came out of the blue. At that time, I believed that there was no incidence of cancer in my family, but now many years and many conversations later, I realize there were signs, but perhaps because it was spoken about so rarely, or not at all, or maybe no-one in the family believed they would ever be touched by the disease, that it was never present in my mind. My paternal grandmother, my paternal uncle and my father’s first cousin, all had different kinds of cancer either before I was born, or when I was a little child. But I had only vague memories of my father’s first cousin being ill and when I was 6 years old, he succumbed to it.

There is a secrecy and stigma about cancer that doesn’t exist with other illnesses. When people are diagnosed with the illness they don’t want to talk about it, or the family keep it to themselves. Very often, the patient recovers and it is never spoken about at all, or perhaps the patient passes away, but no-one is told they ever had cancer. Perhaps there was a time when the diagnosis of cancer was a death knell, but it is not so today. Even the most advanced cases of cancer have been able to be treated successfully.

But even at that time, I came from a different point of view – that cancer is a disease just like heart disease or strokes, that it can happen to anyone and that sometimes there is no logical reason for it happening. Like my oncologist said, when I asked him if some people are prone to my type of cancer – it’s just a bad gene! So right from the beginning of my treatment I was very open about having cancer and this allowed me to surround myself with a strong group of supportive positive minded individuals. During my treatment, while my husband was my primary caregiver, I also had many friends and relatives who gave their support, in the form of bringing food, books, movies, or just being there. I believe that it helped greatly in my recovery. It gave me both emotional and physical strength to endure and cope with the treatment I had to go through.

My seven months of chemotherapy was brutal. Many times I felt that my life was just going from my own bed to a hospital bed for my next bout of chemo. I had very few good days and most times was carried through emotionally on the shoulders of others with their concern, their love, their prayers, and their good vibrations. The smallest of gestures mattered to me and in fact having cancer taught me to be on the receiving end of such kindness. People in general are not used to getting kindness, we are more comfortable giving it. A big lesson I learnt from cancer was to be ever so grateful for the love and care that was showered on me and given so generously.

Another lesson I learnt was to ask others who had gone through cancer for advice. Because in Sri Lanka people are shy or reluctant about saying they had cancer, I had only one person I could ask advice from. I was grateful that she warned me about the small things – the mouth ulcers and how to avoid them (use mouth wash like mad); that you put on weight for the steroids; that for the first few days after chemo, you get constipated and then expect the runs. What a relief it was to be able to talk to someone who had been there and knew what it was to go through treatment. Doctors in Sri Lanka are so overwhelmed with patients, that they have very little time to help a patient emotionally and mentally. For that the patient needs to turn to other sources. Therefore, even though I never met my cancer support friend during treatment, just the thought of having someone at the end of the phone was comfort to me.

One of the harshest features of going through cancer treatment is the loss of hair and I believe that is one of the defining reasons why cancer is more dreaded than any other illness. When I knew I was going to lose my hair, I had a fun hair cutting ceremony with my friends before I began treatment, allowing them to indulge in their hair dresser fantasies. We had food and drink and a lovely afternoon before I was to start my first chemo in a few days. After the first session, when I found chunks of hair coming out, my husband shaved my head and then he shaved his own to keep me company. If I met people at home I wouldn’t cover my head, but if I went to hospital or a drive, I did wear a scarf. I found a wig too uncomfortable to wear. I had short hair for more periods of my life than long hair, so being bald didn’t quite bother me as it could have. When my hair did grow out (curly at first) I decided I wouldn’t colour my very grey hair and that went onto become a conversation opener about cancer. Many strangers were surprised and sometimes bothered that I didn’t colour my hair. When I said quite frankly that I had cancer, I sometimes sensed a change in their reaction, which wasn’t always positive. It was only a couple of years later, I think I realized why. On a van back to Colombo with some volunteers doing some literary work in Galle, my neighbour, a young girl asked me why I didn’t colour my hair. When I said quite matter of factly that I had had cancer, she fell silent. After ten minutes, she told me that she was surprised I spoke so casually about having had cancer because when her mother had cancer, her mother was told by relatives, friends, neighbours, that her cancer was a punishment for having done something in a previous life. That shocked me. I had never come across such an attitude from anyone and I thought it was a lack of compassion on the part of others, to say such a thing to someone having to go through the tough treatment of chemotherapy. It was frankly, unkind. They are certainly not the people you want around you when you are going through cancer.

Cancer happens. It can happen to anyone at any time. Most of the time there is no fault involved, no-one deserves to have cancer like no-one deserves to have a stroke or a heart attack, but bad things happen to everybody at some time or the other in a life. The key, is to take life for what it is. Having cancer could be seen as the best thing to have happened to me. I got wonderful friends, got rid of not so wonderful ones, I learnt how to be grateful, how to care for others and how to be compassionate myself. I believe that I grew as a person and a human being because of having had cancer. I also learnt that however bad things may be in the world, it is still a wonderful place to be in.