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Louise McIlroy, Co Antrim

I first starting experiencing nausea, bleeding and exhaustion in January 2009. I knew what these symptoms could be. I’m a nurse, so I’ve cared for cancer patients, but it didn’t feel like something that could happen to me. I was in my thirties, too young to have bowel cancer. Still, I went to see my GP.

After taking samples I was sent to hospital (the same one I worked at) and booked in for a colonoscopy. I was told I’d have to wait several months for the test, which was incredibly tough both mentally and physically. I was still so sick that I was in and out of A&E constantly. I actually ended up taking a break from work, as though I was always at the hospital, it wasn’t for work.

Then in March I fainted at home on the stairs and had to stay in hospital. I remember one of the consultants telling me that all the symptoms were psychosomatic. I was so shocked that someone had said that to me. I’d worked as a nurse for years, I knew what I was experiencing and it wasn’t just in my head. The consultant’s behavior towards me was also impacting the care I was getting from his team. It was a horrific situation to be in.

Come April I finally underwent my colonoscopy, which was overseen by the same consultant. My mum was with me in the room, which really helped keep me calm. The consultant said I appeared to have a completely healthy bowel, then added that he hadn’t been able to see the transverse bowel. How could he know if he hadn’t seen it all?

My mum asked what the next step was, as I still had such awful symptoms. At this the consultant rolled his eyes and sighed ‘I guess I’ll have to book a CT scan then’.

After that I felt I had no other option than to find £2,500 to be seen privately. Fortunately my mum and stepdad were able to pay for this, otherwise I don’t know where I’d have found that kind of money so quickly.

I went to Ulster Clinic for a CT scan at the end of April. Ten days later I got the call – I had bowel cancer.

It felt like the floor had gone from under me, it was petrifying. I’m married with a husband and children and I couldn’t even think about how I’d tell my mum. There is such a difference between knowing in your head something I seriously wrong and then actually hearing it.

My mum asked what the next step was, as I still had such awful symptoms. At this the consultant rolled his eyes and sighed ‘I guess I’ll have to book a CT scan then’.

I had surgery in June. Afterwards I was told that it looked like the cancer was very aggressive. My surgeon took 24 lymph nodes and of those, 19 were effected. On hearing that I was inconsolable. My aunt came to comfort me (as she worked in the hospital) and my family, along with my two best friends were amazing in helping me get through.

It was decided that the best course of action would be for me to have six months of intensive chemotherapy. But I had to wait several weeks before I could start. Those were very dark weeks. All I could think about were those cancerous cells floating around my body unchecked, terrified of where they might spread.

I was pleased to start chemo but it was very rough on me. For six months I had IV chemo every three weeks and oral chemo in-between. I was basically bed bound. I didn’t exist outside the house, everything had to go on without me. School plays, birthdays, I knew life had to go on, but I felt so alone. We couldn’t afford for my husband to stay home, so unless my Mum drove an hour to visit, I would be on my own. It was so easy to get frustrated and take things out on my loved ones. I also started to drift further and further down into depression and had to go on anti-depressants.

I started writing diaries of memories for the kids, so if I wasn’t around when they were growing up, I could still tell them all about when mummy and daddy met, how they were born and all the great things we did as a family. Looking back on these diaries now is bitter sweet, the memories are amazing, but sometimes I’ll stumble across a page and remember just how much of dark a place I was in.

I finished treatment in December 2009. I hoped I’d just bounce back to normality, but of course I didn’t, lots of people find the period after finishing treatment very tough. Suddenly you go from having a team of family, friends and medical staff around you, to being back on your own. You’re just starting to really appreciate the impact of everything you’ve been through and that combination can be a lot to deal with. You’re physically well, but not mentally.

I lived in fear the cancer would come back (I still do) and after so many months of being dismissed, I was scared of telling people when I felt something was wrong.

 

I lived in fear the cancer would come back (I still do) and after so many months of being dismissed, I was scared of telling people when I felt something was wrong.

On top of everything, one of the side effects from my treatment was that I went through the menopause early, which started just before my 33rd birthday. Due to this I also had to have hysterectomy due to the risks posed following genetic testing

Six years after my treatment had I ended, I started have seizures, which were put down to the prolonged and underlying stress I’d been under, from not being believed to coping with the diagnosis, treatment and the aftermath. Honestly, between cancer and all of the continuing side effects, I think I’ve now taken so many pills I might rattle!

I was keen to get back to my day to day life as a nurse. But I had issues getting back to work. The hospital said I’d been away for too long, so they could terminate my contract if they wanted to. Thankfully, I was part of the union, who were a massive help in working with me to fight this. Eventually, it was agreed I could come back to work, my contract untouched.

Getting back to work really helped bring a sense of normality and routine to my life. Slowly but surely things started to calm down and my depression loosened its grip on me. It took a while, but I’m now back to being in a really good place. I have an amazing husband, children and family. I’m back looking after people every day in a job that I love. And now I can use everything that happened to me to help other people and make sure nobody is ever in the same position I was. 

But we’re improving access to treatment and care for advanced bowel cancer

Nearly 10,000 people in the UK are diagnosed with advanced bowel cancer each year. This is when the cancer has spread to somewhere else in the body, such as the liver or lungs. People with advanced bowel cancer typically have poorer outcomes but access to surgery and drugs can help to extend life and can sometimes be curative.

We are determined to improve survival rates and support for people with advanced bowel cancer. We want to see improved access to high-quality treatment to ensure longer survival and a better quality of life for people, including:

  • Increasing survival rates and improving holistic support for patients and their families
  • Reducing inequalities in access to potential life-saving liver surgery
  • Improving access to cancer drugs based on clinical need and not postcode
  • Providing better communications and support for people with palliative and end of life care nee

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