My Health Experience: ‘People who don’t know me do not realise I am sick’
Being really ill with cancer, but looking healthy, can make a harsh situation almost unbearable
Aoife Kavanagh at home in Greystones, Co Wicklow. “I have turned into a wheatgrass-shooting, veggie-juicing, food hippie.” Photographs: Cyril Byrne
I am 27 years old and I have cancer. It is a rare form that has spread to my liver and a bone in my spine. Before I was diagnosed I was fit and had almost qualified as a physiotherapist. I’ve been having treatment for a year, most of which has failed to produce the desired effect. When this type of cancer, ocular melanoma, has spread to the liver, life expectancy is poor.
I still look well. I have been conforming to a regime of organic food, no sugar, no alcohol and no caffeine for the past year. In the past few months I’ve further restricted my diet to no carbohydrates, no dairy and hardly any fruit. I have turned into a wheatgrass-shooting, veggie-juicing, food hippie. The funny thing is I look better and healthier than I did before my diagnosis. None of the treatments made me lose my hair. People who don’t know me do not realise I am sick. I have lost some weight, but most people would think this a good thing.
When I sit down in the oncology day ward for treatment, I normally get looks from other patients who expect it to be my mother having the chemo. One day I decided to ask her not to accompany me to my appointments any more. Many of the nurses who treat me are my age, and they talk to me as if I were a friend. Only once in the whole year did I see another patient my age getting treatment. Patients I talk to in the day ward generally think I am not “sick” sick. They say things like, “But you’re okay. You’re so young and fit looking.”
Nowadays, evolving cancer treatments mean that a lot of people diagnosed with cancer will be cured. The result is that there is an expectation that if you look well and if you are young, you will be cured. I have spent more time than I would have ever wished watching television this year and have noticed a trend of storylines in which people who have cancer go into remission.
Over-positivity is not just widespread in film and television series: Jennifer Saunders recently said on the Graham Norton Show, “It’s a process
. . . it’s a cure you go through when you have cancer.” The prevalence of positive cancer stories in the media is creating a distorted and confusing picture of cancer.
Of course it’s wonderful that many people are being cured nowadays, and that the media reflects this. These stories can be motivational and inspiring for cancer patients and their loved ones. For me, though, it’s an added pressure. I look well, and I am young. I fit the mould for the storyline of the girl who is cured. People expect you to get better – especially when you don’t have a “well-known” cancer. They ask questions like, “So when are you going to get back to your studies?” It is difficult because you don’t want to disappoint them.
Living with your parents at the age of 27 is not normal. Spending a whole year feeling generally not well is not normal. Sometimes people forget that you need to feel normal. Going out for lunches or coffees is fun, but after a year of sitting at home you pine for something a bit more exciting. You want to go out and dance, pretend the sparkling water you’re drinking is a vodka-sprite and talk to guys your age who are not medical professionals and who don’t know you’re sick.
Earlier this year I did go out and pretend to be normal. Instead of sparkling water I decided to go for it and added gin to the mix. I had never drunk gin before in my life, but it conformed to my no-sugar diet and I decided that one night wouldn’t hurt. On the last bus home I sat content in the knowledge that I had had a great night out with my friends, met some new people, and to top it off, I was much less drunk than the people who fell into their seats beside me. They stumbled up the stairs, attempting to hold onto their chips while I sat happily clutching my handbag. I wasn’t too concerned about their imminent hangovers.
My self-satisfaction stopped when a mere four stops later I was forced to make a quick exit from the bus. I ended up appearing much more drunk than even the girl who had dropped curry sauce all down her white blouse.
The body that once had tolerated rounds of wine and mixed drinks had now decided to stop accepting alcohol. Doubled over, clinging onto my handbag, and being stared at by a busload of passengers wasn’t quite the look of understated cool I was going for.
A €50 taxi ride home and a two-day hangover meant a lesson learnt. No more alcohol. I was young, but my body wasn’t quite up to living a young person’s life right now.
I hope to be one of that tiny percentage the treatment will cure. I hope for spontaneous recovery, or that I will somehow beat the textbooks. I hope to be like a character in one of those remission storylines.
“So when are you going to get back to your studies?” The truth is that I know no more than the questioner about when I will be returning to my studies. I hope it will be soon. I am hoping to rewrite the textbooks.