'A great friend once told me never turn off the dream machine' - Irish mum-of-four on coping with 'Cancerland'
Busy working mum Alison Kelly blamed her weight loss on a hectic lifestyle. But the truth was more sinister
In April 2014, I was rushing around from one school drop-off to another pick-up, living in a stress bubble of work, getting thinner by the day, not really knowing I was secretly dieting, but delighted with my skinny frame all the same. Two babies and waist 28-inch jeans? Fantastic, I thought as I bought a new pair to go on a weekend trip with my sister to see our other sister in London. Drinking, dining, fashion awaited us. We always have the best times together.
While I was away, I started bleeding again, something that had been going on for months. My sister, a nurse, made me promise to visit my GP. It was a "it's not normal" conversation and after months of justifying my symptoms as some sort of post-pregnancy side-effect, I made the appointment.
My GP has known me for years. He was quite reassuring that it was probably just a cyst or my cycle settling down after breastfeeding. We decided to arrange a smear test, but before leaving, he checked my stomach. I will never forget his face. He asked if I could feel what he was feeling and moved my hand to replace his. I could feel this large mass protruding from my body, on both sides. I could feel the pain I'd been experiencing for months and been writing off as too much, or not enough, food. The air sucked out of the room. This was one of those you can't really hear or think moments. An ultrasound was arranged for the following day.
The only other time I'd had an ultrasound was in pregnancy, so I nervously cracked jokes about it being a boy or a girl, but the radiographer's response was no joke. It was the first of many "this is very serious" moments. Within minutes of having the ultrasound, my GP phoned. Thankfully my husband Colm was with me, as I'm pretty sure I would not have been able to drive home. My GP wanted to discuss the results and make "a plan". "A plan", "results", "this is serious"; words I was not used to hearing and I was getting quite terrified. When we got to our GP, he told me my ovaries were swollen and needed to be examined urgently.
Next to the gynecologist and an operation to remove my ovaries was planned. I arrived, nervously, at the hospital for the surgery. But it had been cancelled. My first thoughts were of embarrassment, I'm nearly ashamed to admit. I thought there had been some big mix-up and all the 'serious' conversations were everyone being over-cautious and there was nothing wrong. But then the hushed tones and knowing looks became apparent. I was told the doctor wanted to see me.
There are days in your life where things happen around you and you have no idea what is going on - this was one of those. My amazing super-sister, Siobhan, a specialist oncology nurse in the hospital, was waiting for me in the room, which was strange. She grabbed my hand and I saw tears in her eyes. In walked my doctor and to this day I really don't remember what he said apart from "high levels of cancer cells". It was all a blur after that and the next step was to see my oncologist, Prof Desmond Carney, who has been a consistent presence of support, advice and reassurance.
My initial diagnosis was of the very serious variety. The primary cancer site was my appendix - itself very rare and unusual. It had metastasized to my colon, bowel, uterus and ovaries, causing the swelling that had prompted me to visit my GP. Appendiceal cancer is very hard to diagnose due to a lack of symptoms so, in a way, I was lucky the tumours moved to my ovaries.
My treatment plan was six months of chemo to shrink the tumours, before a large operation to remove the tumours, my womb, uterus, ovaries and a large part of my bowel. My surgeon performed ground-breaking HIPEC surgery also, which essentially washed my body with chemotherapy during surgery - only a few people had been treated like this at the time. Post-surgery recovery was long, as I was left with a stoma (an artificially created hole in the abdomen so faeces can still leave the body) , which I had to get used to. I was propelled into the menopause due to a hysterectomy.
Cancer treatment and recovery can really impact on family life. I'm incredibly lucky and have outstanding support from my husband, in-laws, parents, friends and siblings, especially my aforementioned sister. I honestly don't know what I would do without her advising and minding me when I can't mind myself. I've been cared for by the outstanding nurses in the Mater Hospital and the Mater Private Hospital. How they look after their patients with such heart, day-in, day-out, cannot be easy. Cancer patients are either experiencing the worst day of their lives receiving a diagnosis or having really tough times with treatment. They are true life-angels to get us cancer crusaders through.
They put me in touch with ARC Cancer Support Centres, which provide practical life support for people with cancer, from counselling to yoga to support groups. It can even be just a cuppa and a chat with their volunteers on a good or a bad day. As a mum to Lughan (10) and Fionn (6), I can attest to the fact that their latest programme, CLIMB, for children whose parent or significant adult is going through cancer, is fantastic.
Although I've exceptional support, it was great to use the free counselling sessions to 'let it all out'. The counsellors helped me think through my 'new life'. I'm luckily not terminal, but in the past four years, I've had another three diagnoses of tumour regrowth. So, to combat this, I'm on bi-weekly chemotherapy sessions for the rest of my life.
There have been many ups and downs as I travel through what I call 'Cancerland', but without the support of family, friends, my employers Tesco Ireland, my doctors, nurses, husband and children, I'm sure I'd have given up long ago. I've made so many positive changes to my life as a result of cancer that although it has changed me physically, it has improved my mental approach.
I'm still ambitious for my future, I've plenty of life to live, even though it's with certain limitations now. I recently achieved a life-long dream by being accepted to art college. A great friend once told me "never turn off the dream machine". I have no intention of doing so. I may have cancer. But it doesn't have me.
Alison will be a torch-bearer in the ARC Cancer Support Centres' Torch of Hope Relay around Dublin Bay on Sunday, October 21. Visit arccancersupport.ie/torch-of-hope. Cancer Week Ireland - a national initiative to get people talking about cancer and how to spot it - runs until Sunday. Visit cancerweek.ie