Beth’s Story

I think back to that time, that day of diagnosis and those precious weeks over Christmas and New Year and our daughter was in England and we wouldn’t tell anyone until Clare had come back. So you’re really sort of living in this, this really tender space that is marked by occasion because it’s Christmas and trying to not be sad that this is probably my last party.

I live in Sydney, I live in the Inner West. My husband and I met at Carols by Candlelight by chance a long time ago and we’ve lived in England and then we came back because there was a wonderful oncology nurse job that I was offered and applied for.

Yeah I’m really lucky, I’ve got a wonderful family, three adult children who are the best thing since sliced bread.

Like everybody I was really busy at work but I’d noticed that I could get a bit breathless and I developed a cough.

I stopped walking Fergus because I was just too tired. So due to me being unwell we’d already had to shave two weeks off our trip to Europe and thank God we were able to go to Venice, really looking forward to being there, enjoying being on the water but also the full moon was there when we were in Venice and really keen to get some really good photographs from the bridges. It was so disappointing just not being able to manage the bridges to get those really good photographs.

My diagnosis was a long time coming, so in the March I saw my GP and was referred to a respiratory physician, had a full respiratory workup, there were no issues or complaints there, nothing explained why I had this cough. I saw a cardiologist and had the full monty of investigations and then right at the end had a heart MRI and that showed something on my liver.

I’d had the liver scan on the Friday, I got a call saying the doctor wanted to see me that afternoon.

The GP gave the size of the lesion and it was the size of your fist, so that great big thing had been pushing up and growing in my liver to distort, so that’s why I had this cough and that’s why I was so short of breath.

I was seeing the surgeon the next day. The tumour involves two major veins so surgery was out of the question. I needed to have chemotherapy to shrink it down and I started chemotherapy at the end of January. So the plan was to have four cycles of chemotherapy and immunotherapy and scan, and then hopefully have surgery. And the tumour didn’t budge at all with treatment, so the best way to go forward was just to continue with the chemotherapy and immunotherapy.

Fortunately, during that time I had had access to the MOST trial and that’s where the gene mutation was identified. How it played out was that I finished the chemotherapy and immunotherapy and went straight to trial because the chemotherapy just did not change the size of the tumour.

So it was fantastic being on this trial and within two months the tumour had shrunk by a bit more than a third, so that was the first time that there was something to get actually excited about and think gosh, you know, we could plan things, we could anticipate things and but it comes at a price because there are side effects. I was on it for a year and it broke through well you know there were new secondaries and I was so lucky that my oncologist had access to another drug that was similar to the trial drug but no one in Australia had been on it yet and I’m still on that drug now.

What you have to live with. I didn’t have a nurse. How do you navigate all the things that you have to navigate now? I had this army of wonderful friends but they’re my friends and they are just stressed that their dear friend has a Cholangio and I can’t stress how happy I am to know the Liver Foundation has a specialist nurse. That is gold and hopefully nurse will grow to nurses and what that will bring to patients.

I think it’s wonderful that the Liver Foundation is providing this type of care. I have the most wonderful life and I look forward to lots of things, I have lots of joy, lots of happiness, wonderful family and friends and it’s great to be able to tell my story.

And I did go back to Venice and there’s a great photo of me and that absolute feeling of pure joy that I did this, I’ve mastered that and it’s because of being on the clinical trial.