Fingers & toes crossed

Monday 2 April, 2012

In March 2009, about 2 weeks after I had my son, I had really bad tummy pain. It made me sweat and hunch over. I thought it might have been from me over doing it after the caesarean I had a few weeks before. It kept happening. I tried everything from hot baths to making myself sick, it was so painful.

I would call my mum in the middle of the night just in case I passed out, as I was alone with my 5-year-old daughter and my newborn son. Mum was an hour away. One night my cousin was with me and I had a really bad attack. I was hunched over the couch, and it was going for about 40 minutes when my cousin called an ambulance. I got to hospital, blood pressure through the roof. I got taken straight away for an ultrasound, had blood tests and was put on a fluid drip.

I've been to Emergency plenty of times and what happened next had never happened before. A man came in and asked if he could say a prayer for me. I was clueless at the time, closed my eyes and listened. He left and the doctor came in. He said I had gallstones, my white cell levels were high (I had no idea what white cells were) and I had a 5cm tumour in my tummy. I still didn't think much of it. I've never had to relate tumour to anything, so I was clueless. After that I was sent for blood tests and had to do a 24-hour urine test. My bloods had to be sent to Queensland for special tests. I was booked in to get my tumour removed in Melbourne.

While I was waiting for surgery, I spent a lot of time with my newborn bub and a very confused 5-year-old. It was very sad. Then the day came for the surgery. I took the train up to Melbourne the day before as all my family were working and couldn't take me. Laying in the hospital bed in a place I didn't know with no idea what I was in for. I couldn't sleep that night; I missed my kids, and still wondered what was going on.

Early the next morning I was taken into this little room and there was a man to give me needles and a nurse holding my hand. I could see all the doctors in the next room getting ready for me. I remember the man saying he was going to give me something that would make me feel a little funny and that's all I remember, until I woke up. I had the worst pain I've ever felt. All alone and no-one to tell me I would be ok, it was awful. I would wake all hours of the early morning and call my mum and cry and tell her how much it hurt. I was cut around the bottom of my left rib.

A few days later, I was able to get up out of bed. I was so proud; felt like I just learnt how to walk. I turned around and my mum was at the door – I nearly fell over! Then my brother and sister in-law turned up. After slowly walking around the hospital with them all day, they left.

That afternoon, all the doctors came in, as they did twice a day, but this time it wasn't to see how I was doing. One asked me if I had anyone to be with me to hear what they were about to say. Still having no idea, I said 'No, I'm right.'

Then another doctor said, 'The 15cm tumour we took out was adrenal cortical carcinoma.' I was like 'Huh?' He said it was a rare cancer of the adrenal gland. He said they were sure they had got it all.

I still haven't got my head around the moment they told me. After I got out of hospital, life was tipped upside down. I was lost. I was so glad to be home to my kids, but I felt like my connection was lost with my son. I thought he wouldn't remember me. But of course he did. My daughter became so clingy, she wouldn't leave my side. She didn't want to go to school, even though she had no idea what was going on, because 'I was better'.

I saw an oncologist that I didn't like, my GP, counsellor, kidney surgeon, had blood tests monthly, PET/CT scans every 6 months – I was stressed!

In July 2010, 12 months since my last operation, I had my 12-month scan and went to my kidney surgeon for results. Again I was alone.

It was back! Left side again. The new plan was major surgery to remove my left kidney, spleen, part of my pancreas and the tumour, of course. So off I went for my tests, needles and scans. I had to get my kidneys checked to make sure my right kidney would cope. Turned out my left one was the better one, not that it mattered. Surgery was in September.

I told my daughter this time what was going on, I explained it out of a book. It broke my heart. It still does. It was the hardest thing I've ever had to do. This time my mum, sister and step dad were there to take me to hospital. My daughter even came to drop me off. It made us all strong with her being there. My sister took my daughter home and my aunty had my son.

Early hours of the next morning I woke up and my mum, step dad and my big brother were at my bedside. My brother tried lightening the mood and raised my bed as high as it could go, and tilted me up and out. Made us giggle. I was scared and so were they. Mum's eyes were all red from crying, and my step dad looked as if he hadn't slept. It was time to say goodbye.

As I got wheeled away they all followed me to the elevator. I cried so hard. I was just so scared I would never see them and my kids again. I was pulled apart from mum's hand and again placed in a little room with a nurse calming me down and that man who was about to give me that funny stuff.

I don't remember too much of waking up. Apparently it was very emotional and I wasn't breathing properly. I have been told there were some funny moments once my breathing was stabilised. Mum said the first thing I said was 'I'm alive'. I had a big tube in my nose, one in my neck, two in my belly, the oxygen mask on, and a button in my hand to control my pain relief.

My thumb was glued-on, pressing that button, I was in so much pain. I was made to sit up on day 2, as I wasn't getting enough oxygen while I was lying down. It hurt like crazy! I cried. I had people around me saying how well I was doing and telling me I was a good girl. I made some very nice friends, and the nurses were so lovely and caring.

The first time I walked, the whole room cheered me on, it was so good. I rushed myself to be alright enough to go home to my kids. My sister came to get me and I could barely walk to the car, but I made it and didn't look back. My parents had moved in with me to care for me and my kids while I was on the mend. They quit their jobs and my mum became my full-time carer and my step dad got any work he could to pay their bills and loans. It has set us all back financially a lot. None of us have spare money these days – in one hand and out the other. But we have each other. And my kids still have their mum.

I haven't had a scan for 2 years. I have had blood tests a lot to make sure my kidney is ok, and had ultrasounds every 3 months to check things are ok in there. My cancer doctor wouldn't send me for any more scans. He said all that radiation isn't good for me, so I haven't seen him for 12 months. I felt he was giving up on me so I just didn't feel the need to see him anymore.

Recently I went to my GP, and told her I want to have a scan. So she referred me back to my kidney surgeon who I saw two weeks ago and he sent me for PET/CT scans which I had yesterday. Now I'm waiting for results. And I'm so scared. We all are.

Fingers and toes crossed I'm ok. I just want to thank my kids; my love for them got me through all this. They have been my little rocks. I love them so so so much.

Updated: 02 Apr, 2012