Life Health & Wellbeing

Monday 15 September 2014

'After being diagnosed with genetic cancer I must find my birth mother'

Emma Crowley wants to find the woman who gave her up for adoption at birth to warn her to get screened for the hereditary bowel cancer.

Emma Crowley

Published 19/08/2014 | 02:30

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Emma Crowley. Phtoto by Clare Keogh; Hair And Make-Up; By Mark Vincents, Ballincollig, Co Cork

I'm celebrating. I took my last oral chemo tablet on August 7 and I'm off with my Prada bag to have a latte at Café Chico with friends.

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Prada is my name for the colostomy bag that I'll have for the rest of my life after my bowel cancer surgery earlier this year. Calling it that is one of the things that has helped me make it through the last year.

It's been a hell of a journey. I lost my mother to cancer in August 2013. I was diagnosed with cancer myself in October the same year and then I decided to trace my birth mother as the type of cancer I have is hereditary and I want to make sure that she and my father (and any children they may have) know to get screened.

I started a Facebook page called 'The Big C - Emma's Journey' to keep me sane and, I have to say, it has saved me. I never thought that I could write about my illness and treatment - we're not really a nation to talk about our insides, are we? - but I think now the time has come to change that.

My new motto is this: 'Any lumps, bumps or blood, go to your doctor to get them checked. And remember, Google is not your doctor.'

When I first noticed my own unusual bleeding in December 2012, I did nothing about it. I noticed blood in my stools, but I put it down to the excesses of Christmas. I had started a new health regime in May 2012 and had lost quite a bit of weight, so I was sure that my body was just protesting about the Christmas splurge.

Also around this time, Mum wasn't feeling well so I didn't bother mentioning my own problems. Unfortunately, mum was diagnosed with pancreatic and lung cancer on February 14, 2013 and was only given so long. When I found that I was still bleeding months later, I put it down to stress. I wasn't sleeping, my diet was all over the place, I had given up tennis, I had given up the gym; mum was my main priority.

In June 2013, I went to Dr Lorraine Denis in Curraheen. I told her that she wouldn't be seeing much of me as I was as healthy as an ox. I just mentioned the bleeding in passing. She did an internal there and then and told me that I needed an urgent colonoscopy. I said no, that Mum was my priority and, to this day, I'm so glad that I delayed the colonoscopy. I just could not have coped with my own cancer diagnosis at that time and I would have tried, unsuccessfully, to hide it from my mother.

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Mum passed away on August 10, 2013, six months after her initial diagnosis. To say we were distraught is an understatement.

In September, I went back to work in Apple and, by then, I noticed I had pains in my bum and in my lower back. I was exhausted and I could never be far from a bathroom. Again, I put it down to the stress of the previous few months.

On Tuesday, October 22, I went for my colonoscopy in the Bon Secours Hospital in Cork. During the colonoscopy, I was under heavy sedation but I could hear them urgently calling for somebody to have a look at my backside. I was quite embarrassed but then dosed out of it again. That evening, they wanted me to stay in hospital for a CT Scan and MRI, but I was having none of that. My consultant Dr Lucinda Jackson said I had numerous polyps and because of the number, they were most likely to be hereditary.

Adopted with no medical history

I was adopted when I was just seven days old and I have no medical history. All I know is that when Mum and Dad came to collect me, I had dislocated hips and an eye infection. Two nappies were used to sort the hips and eye cream fixed the eyes. Mum used to joke that I was always going to be an expensive child.

That night, I went home and told everyone that I was grand. Dad was busy looking up haemorrhoids in the encyclopaedia; I did get a giggle out of that.

The following morning I went in for my MRI and CT Scan. Just by chance, I met my consultant and I'm not sure why, but I asked: "Is it cancer?" She asked me to come to her room that afternoon and to bring someone. I knew then that the news wasn't going to be good.

On Wednesday October 23 4.30pm - I remember the time as we had been waiting a while - my sister Ruth and I were told that I had stage 3 hereditary bowel cancer that had spread to the local areas. Initially, I was in denial. At 39, I thought I was too young to have bowel cancer. Surely, it must be breast cancer, that's what all women get; bowel cancer is for older people (no offence). She also said there was no legal obligation to search for my biological parents but that if there were other siblings, they should be advised to go for screening. A whole new can of worms had been opened.

As soon as we walked in the door, Dad knew it wasn't good news. My heart broke for him and for Ruth. I believe it's harder for those watching than it is for the patient.

Diary of a cancer patient

I met my oncologist Dr Brian Bird on Friday, October 25. My treatment was going to consist of radiation and oral chemotherapy for 28 sessions. This would bring me up to Christmas. Then I'd have a month off before surgery. I would have my large bowel removed, followed by more chemo. I decided there and then I was going to have to take it one stage at a time, my poor brain couldn't take in so much. It was all a bit of a shock. I went home and started a Facebook page 'The Big C - Emma's Journey' - a page all about me and the pain in my bum. Initially, I thought I would post things like "no visitors" when I was feeling crap, but then I thought that I would use it to help make people aware that bowel cancer can hit anyone at any age.

For the next three weeks I had a medical appointment every single day - CT scans, MRIs, a PET scan, a meeting with the radiation team in Cork University Hospital. It was all so surreal. In fact, it still is.

On Monday November 11, I started my first radiation session. I drove myself to and from hospital every day as I wanted to be independent, although I'm sure there were days when I shouldn't have. Once diagnosed with bowel cancer, you lose all modesty as your bum is forever on show. As the sessions continued, there were days/nights when I cried with the pain, holding on to the sink in the bathroom or biting my pillow. I had no control over my bowels and that in itself was demoralising. All I could eat was toast. Everything smelt and tasted horrible. Radiation and oral chemo prior to surgery is not common but it has proven results, the main one being to reduce the tumour (which I called Todd) and to kill off any surrounding cells.

January 2014. I had a month off, as radiation still works for about four weeks. I attempted tennis, I attempted the gym but I was tired. I also met my surgeon Mr Brian Barry who told me about surgery and the colostomy bag I would have for life, but I honestly had no idea what was ahead.

In very early January I went to ARC Cancer Support House. I needed help and it was one of my better ideas (they're few and far between). They really are amazing in there.

Rock bottom and my new BF

I went into hospital on Thursday January 30 and didn't leave again until February 21. Unfortunately, nothing was working: my stomach had gone into shutdown. At one stage, I had four bags hanging off me, two drips, a Picc line and a tube stuck down my nose. I had reached rock bottom. Depression set in. I was sending visitors home, crying all the time and wondering what had I done to deserve this. Mr Barry became my new best friend, God love him, and the staff on St Joseph's corridor were amazing.

I would end up in hospital over a two-month period. I lost over three stone in weight and I was even scared of how shook I looked. I could not motivate myself to do anything: lifting a pint of water was hard work, not to mind trying to shower and change my Prada bag. We came to the conclusion that morphine didn't suit me. Once I came off it, I was a new woman and found I was able to socialise a little and walk around the park - little things that I hadn't been able to do for months.

On April 28 I started my final stage of treatment, which consisted of six cycles of chemo both intravenous and oral, and I've taken to it like a duck to water. I'm eating very well, have no nausea and I'm out meeting friends nearly every other day for lunch/coffee. I got to my best friend's wedding, too. I thought I might last half an hour but I didn't get home until 2am.

A few weeks ago, I also started the search for my birth mother, birth father and siblings. Now that I know my cancer is hereditary, I couldn't live with myself thinking that they may not be aware of the importance of screening. I have been put on a priority list because of the medical background. In recent months, mother and baby homes have been widely in the media and I was adopted from Bessboro in Cork. Sometimes I feel I'm on a mini current affairs programme (or maybe a soap opera) with my adoption, my cancer and mum's cancer. Then to top it all off, my handbag was stolen from the car when I was visiting mum's grave one day. I got everything back but my cash, my phone and, I'm convinced, a winning Lotto ticket.

A Prada bag for life

So now I have a Prada bag for life. I have to admit I love my bag - it has saved my life. Initially, I'd get very upset when it leaked but now I just laugh. It has leaked on me in public too but luckily I had dark denims on and was heading home anyway. My choice was to cry or to laugh. I laughed - as a cancer survivor (that's what they call us) I am very lucky - I haven't lost my hair, I look better than I ever did, yet I still feel I have to explain myself to strangers.

Don't get me wrong, all cancer is a bitch, but people don't seem to be aware that there are cancers other than breast and prostrate. Skin cancer is the most common form of cancer in Ireland followed by bowel cancer, yet the screening programme for bowel cancer is for those aged 60-69. As a nation we are not one to talk about our bowels, but maybe it's time we did.

Throughout this last year, I could not have coped without my sister Ruth and my dad, my friends, and the medical team and hospital staff. And now that my treatment is coming to end I'm not sure what I'll talk about come September. I'll keep blogging, though, and keeping signing off with that vital message: "Any lumps, bumps or blood, go to your doctor to get them checked. And remember, Google is not your doctor."

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