A bit about me

Hi there, I’m a 45 year old mum from Australia and about a year ago I had excruciating pain in my ‘stomach’. My husband took me to my local doctor who sent me to the hospital thinking I had gallstones. It turned I didn’t and they weren’t sure what was wrong with me but told me to get an ultrasound. So I went for an one which showed up ‘something’ on my liver. I then went for a ct and MRI and was told….we found 2 lesions, they are benign just get them checked in a year. I spent 2014 feeling terrible actually. I was always tired, my stomach ( I thought it was my stomach) hurt and every couple of months I would have these excruciating pains that would last for 12 hours. I had a lot of reflux and pain in my chest that would radiate around to my back. In fact this had gone on longer than a year…closer to 3 years. One doctor had told me it was stress! Another doctor was treating me for reflux. It got to the point where I felt I was just always complaining about something. I had no idea any of this related to those liver lesions. At the end of November 2014 I woke up at 4 am, sweat pouring off me, trying to vomit from the worst pain I had ever been in. Amazingly it went in a few hours, I got up, showered went to work. Once I got there, I was ok, but then it came back. I was sent to a different hospital. There they did a chest xray, ultrasound and ct scan. A surgeon came to see me, nothing wrong with your stomach but we’ve found a lesion on your liver which will need to be removed. I was referred to a specialist. It turned out the pain was the lesion bleeding into my liver. I was sent for another ct scan, MRI and pet scan. All of a sudden I was told it was highly likely I had cholangiocarcinoma a rare form of cancer. My tumour was 8cm. They had also found a spot on the right side of my liver which would need a biopsy, lymph node which required a different biopsy and surgery to remove the CC tumour. The biopsy for the lymph node, in fact it needed up being 3 lymph nodes, was clear. The biopsy for the spot couldn’t be done before surgery as they couldn’t find it( I know…it’s weird but it didn’t show up on ultrasound ). I went back to hospital again with more of the excruciating pain while waiting for surgery. They performed another ct scan….this time they wondered if I had both hepatocellular carcinoma and CC!
Christmas this year was a very special time….I wondered if I would even be there next year. Everyone hugged a little harder and stayed a little longer…. for the first time in my life felt truly loved and cared for….sadly not for good reasons.

Surgery was on the 9january this year. My surgeon firstly biopsied the spot , it was clear. He could then go ahead with the surgery. He removed the tumour in a 4 hour surgery and all all my lymph nodes which were swollen and inflamed but through God’s grace, not cancer. I had clear margins around my tumour and surgery was announced a success. My larger tumour was blocking the main bile duct. I never went jaundice, in fact I look perfectly healthy. I don’t even drink alcohol.

Yesterday I was rung up and told I have my first oncology appointment on 20. February.

Throughout this journey I’ve gone from absolute despair, to sheer terror, to a sense of calmness. I’ve held it all together for the sake of my 10 and 12 year old. I haven’t cried because my husband said he can’t handle it when I cry. I’ve been repeatedly told to stay strong, to be positive and not to cry. I’ve even been told that I will be ok because I have love in my heart, love surrounding me and that I will fight for my children. (What does this have to do with cancer I wonder? I’ve been told that this is a blessing as it will make my children stronger and more resilient. (Why do people say such a stupid things?)
I have to tell you, that when they rang yesterday to tell me about my oncology appointment I burst into tears and realised that this was all real….it was happening and it was happening to me….I just sobbed….I don’t want this….this is horrible. Cancer, it is such a shock isn’t it? I am reaching out to all of you, because I am wondering if you feel like me. I guess every story is slightly different but you can probably relate to the shock and the ‘how can it be happening’ feeling??
Thanks for listening to my story. I feel like no one here in Australia knows what I’m going through. I’m still in a lot of pain from my surgery but slowly getting stronger each day. I would love some feedback on how you recovered.