Thursday 23 October 2014

Legacy of leukaemia

To be cured is one thing, to heal another. The fight for my mind has been every bit as difficult as the fight for my body, writes Karen Connell

Cancer survivor Karen Connell. Photo: Keith Heneghan
Karen Connell: Relapse broke me emotionally, psychologically and spiritually. I lost my faith in everything. Photo: Keith Heneghan

I was 14 when I was first diagnosed with leukaemia. Acute lymphoblastic leukaemia. I had over 90pc leukaemic cells in my body and, let me tell you, nothing feels as bad as leukaemia. Even chemotherapy, in all its gruelling glory, paled beside the effects of rampant leukaemia.

I couldn't sleep. I was eating and eating and drinking and drinking and still I was losing weight and getting thirstier. I hadn't pooed in well over a week and the pain from constipation was all I could focus on.

I was so cold I used to lie as near to the fire as I could without getting burned. My normal walk home from school, about a mile, suddenly seemed insurmountable.

I was a very tall, very active 14-year-old girl with notions aplenty. I'd been training with the Irish basketball squad and was at the peak of my fitness.

Overnight, it seemed, I suddenly started dying. It was like my entire body was shutting down. My bowels didn't work, my muscles wouldn't work, my voice was hoarse and wispy. I couldn't do any of the things I normally did.

I couldn't run during basketball, I couldn't face walking home, I was so thirsty all the time and, dear God, I was so, so cold. I remember the cold probably most, and the pain of haemorrhoids brought on by severe constipation.

My aunt, who'd just had a baby, brought me all these different haemorrhoid creams, explaining which were best, and I remember looking at the colourful bag of strangeness wondering what the hell was going on.

However, I was too tired to really care. I just wanted to sleep and be warm and eat sweets and take painkillers for the awful pain.

But my mum knew better, and she took me to our family GP who diagnosed an ENT infection and tried to send us on our way with seven days of antibiotics.

My mum insisted on a blood test before we went and the doctor called us a day later. I had four coats on and a hat, with my hood up, plus gloves.

Nobody understood how cold I was. My nose bled spontaneously, with no warning, and often wouldn't stop for more than an hour. During one basketball match, I had to be taken off with another nose bleed and I remember my team-mates bitching, in that way teenage girls do so well, that I was so dramatic and that there was nothing wrong with me. I was diagnosed two days after that nose bleed.

Treatment began instantly in Crumlin Hospital, where I was relieved to be free of the pain and rather excited by all the drama. There was enormous relief to be allowed to take to a bed and have people take over and make me feel better. Indeed, the first few days of chemo made me stop feeling like I was dying and just being poisoned instead – there's a very pleasant difference.

I was almost 17 when I finished my oral meds and was free of chemo and the dreaded steroids. Steroids were so much harder to tolerate than chemo tablets.

They affected me enormously, mentally and physically, and while this is great from a 'we're-trying-to-save-your-life' standpoint, for a teenage girl they altered my moods and my weight went up.

It wasn't unusual to find me sobbing into my bowl of cereal into the wee hours of the night, so tired and so ill, but unable to concentrate on anything except eating.

I turned 17 and experienced a summer before college that was excitingly perfect. I went into college in September 2004, studying dietetics, even though I wanted to be an actor. By that stage, though, I was a tad confused about life and getting what you want and chasing dreams and wasn't sure I could still be a star with such short fuzzy hair.

I had a great year in college, kissing boys, drinking, dancing and learning. I also became aware for the first time that all was not right with my eating, a fact made so much worse by studying a four-year degree in, basically, eating.

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