Jareen passed away from biliary cancer in March 2022. In February 2022 we were lucky enough to spend some time with Jareen for a full and frank discussion about coping and care. Jareen always put others before herself and she wanted to remove any stigmas surrounding cancer by sharing it, warts and all, with others.
“Don’t underestimate that feeling of heartburn that you’ve had; your skin may be going a little bit yellow and you’re feeling tired. They’re pretty simple side effects or symptoms of bile duct cancer. The other thing is, it doesn’t hurt to get a regular blood test because that’s how my cancer was diagnosed.
That’s what I would recommend; it’s so simple yet could save your life.”
My name’s Jareen Summerhill. I’m 41-years-old and I am the marketing manager at Zoos Victoria which includes three wonderful zoos: Melbourne Zoo, Healesville Sanctuary and Werribee Open Range Zoo. I live in Werribee, west of Melbourne, and I share my house with my husband and two very sleepy, lazy Pugs. My mum is from the Philippines and my dad is from the United Kingdom. And so growing up, I was fortunate to live in a Western home with an Asian influence and I think that’s very lucky.
Jareen’s journey to diagnosis
I was diagnosed with liver bile duct cancer in 2021 and that was a real shock. To be told when you’re 40 that you have something that’s totally incurable … that really silenced me for a long time. When I received the news that it’s incurable, I remember sitting with the Oncologist, going, “What?” She said, “Yes. There is no cure.”
I feel really stupid because I was lying in bed after a great day of pizza with friends and I had this pain in my chest that wouldn’t go away. I couldn’t go to sleep because it was getting worse, then I called for medical advice. They said, “you should go to hospital.” So I went and they checked my heart, which was fine, because I thought I was having a heart attack. They gave me a Pink Lady, which is for indigestion and I was good as gold … the pain went away. Then they did a blood test just to check and that’s when they flagged “Your liver function in your blood test isn’t looking so great, so follow up with your GP.” And so really, it was just heartburn that I experienced and I had never experienced heartburn before. I never really have experienced heartburn again, even though I have bile duct cancer.
In 2021 we were in the middle of COVID and looking back, and being part of a marketing team, it was a really tough time, let alone facing bush fires. I pretty much worked nonstop, I didn’t have a break, I didn’t have a holiday. I felt sleepy and really worn out, and I thought, “Oh, I just need a holiday. I just need that two weeks on a beach and I’ll be fine.” I think, looking back, that’s probably one of the other symptoms that I overlooked. I wasn’t jaundiced or yellow, I wasn’t experiencing any other symptoms at all. So really, if I look back, it’ll be the fatigue and the heartburn.
Now, I tell my friends to get a blood test because there’s so much they can tell from it. Mine was picked up because my liver wasn’t functioning well. It was an interesting diagnostic process. I had two different pathologies going on. The first pathology indicated it could be ovarian and uterine or lymphoma, so we went down that track. That finished with a liver biopsy which confirmed it was liver cancer. Liver cancer was always thought of, at that stage, “oh, it’s just a secondary cancer, so we’ve got to find the primary, because this can’t be the primary.”
Then, once I was confirmed, I got referred to an oncologist who was an expert in this area and she gave me more tests just to confirm where it was. Like, is it in my stomach, is it anywhere else? And, fortunately, it was only in my liver bile duct – nowhere else in that area. Oh, and some on my liver. So that was how I found out. And that was in a space of around eight weeks. And I hustled, I kept calling doctors and their assistants, “I need appointments!” I just can’t sit around and wait because this is urgent to me, so I kept calling and following up. It was great to be able to get that support with their assistance and make meetings, move meetings, make meetings happen earlier, etc.
During those eight weeks post-diagnosis I was a wreck. Knowing the cancer was incurable, I felt, “What’s the point?” It was inoperable because it had spread, so that wasn’t an option either. But having family, friends, just close friends and work know what I was going through was a really big help in supporting me. It did get tiring after a while, because slowly more and more people wanted to be there to help, which is wonderful, but it was hard. When you think you’re 40-years-old, I’ve got my career ahead of me, I’m working, I’m loving this, this is so much fun. We don’t have kids so when’s our next holiday? What are we going to do next? Where do we donate and who do we help? How do we fix the garden, renovate, kind of that whole thing we’ve been through.
The cancer was found through a CT scan and it was highlighted to me by an upper gastrointestinal (UGI) oncologist. She really explained it, she showed me the liver, where it is and how it looks. She also discussed treatment options, but really the priority at that stage was “okay, we now know what it is, because you’re getting chemo and not having surgery, let’s get you into Peter Mac.” I was into Peter Mac the next week and meeting a different oncologist there.
Chemotherapy and treatments
So the treatment I started with was Gemcitabine and Cisplatin and I decided to self-fund Pembrolizumab, I can never pronounce the word, also known as Keytruda. I remember my first day sitting in day therapy, terrified, looking around at the five other people in the room. Watching it as it’s going through your veins. Then the nurse saying to you, which they all have to do, “just tell me of any really bad side effects.” So is my breathing okay, is my heart palpitating? Am I sore? Is it sore? The Gemcitabine really burnt going through my veins.
Cisplatin didn’t and neither did Keytruda, no problems with those. But my days were full-on in day therapy and I felt scared. I just didn’t know what was going through me. Is this going to be okay? At the end of the second week I was fine; I knew the drill. Even though they explain the drill to you, walk you through it step-by-step and show you where you’ll be, it’s nothing like experiencing it for the first time. Because I think there’s one photo that I shared on Instagram and it was my smiling, terrified face … that was me!
I self-funded Keytruda for six cycles. It is not available on the PBS for people with liver bile duct cancer but is for people with melanomas, stomach cancer and breast cancer, so they get it all for free. I opted to pay because it was highly recommended and the evidence was compelling that this could work. The cost was $6,005 every three weeks so I paid almost $36,000 which was a cost shared by our families which was getting pretty hard at the end. The results though, were good. Halfway through I had a 30% reduction of the tumor, a significant decrease of the disease across my liver and my lymph nodes. But coming to the end of the cycle a CT scan showed some early, slow growth of the tumor and of the lymph nodes again in that area.
Straight away after being on Gem/Cis, I went to FOLFIRI – a chemotherapy regimen consisting of Leucovorin Calcium (calcium folinate), 5-Fluorouracil and Irinotecan used in the treatment of advanced-stage and metastatic colorectal cancer. And I did that from about September up until January 2022. With negative results we looked at genomic testing to find something more targeted within a clinical trial because I was starting to run out of options.
I had to get a port inserted for FOLFIRI because you take home a little chemo bottle which was also quite daunting at the time. I got another liver biopsy for the genomic testing which is always quite scary but Peter Mac made it a nice experience and it started my new wave of treatment.
Note: Jareen got a spot in a clinical trial. Unfortunately, her health deteriorated rapidly during the screening process for the trial, making her unsuitable.
Life admin and living well
Pancare gave me some great advice around a massage oncologist because I was coming off the veins, getting cannulas and moving to a port. My veins were really, as one of the nurses called them “quite ropey.” So they get quite hard and just knowing … I didn’t even know that massage oncology was available. Diet is important and the last one is exercise. When it was presented to me, they say, “If we could make exercise a pill, we would, because it helps with treatment. Supports your fatigue so you won’t be tired.”
All of those things I didn’t know about. I wasn’t aware of all the supporting services that were available to help me live the best life I could. Because you just don’t know. Well, no one knows. We only know what’s today, we don’t know tomorrow.
There were other things that I didn’t know about before I was diagnosed, like life admin! I didn’t have a will and immediately thought “Oh, I better get a will. I should get an advance care plan, just in case. I should organise an attorney to help with medical decisions and financial decisions if I can’t make them. I also had no idea that I had insurance linked to my superannuation. These kinds of thoughts started entering my mind … because that’s a real worry. Also coming from a job working full-time to part-time, losing income was stressful.
I made a bit of a joke about planning for my funeral, like: “Well, I’m not really going to be there, so you guys can have fun. Just have fun, but just so you know, I want Beyonce played. I really want this Boyz II Men song played, so yeah. And don’t put me in a chapel, I’d like to be somewhere outside, please. Just don’t make it too funeral-y.
I just needed to put it in writing. That was hard, trying to do that. Then I think I spoke to my psychologist and she said “Okay, you need to stop doing that, you’ve covered enough in your will. As long as everything else is sorted and the lawyers are happy, stop. Because you’re thinking about something that’s way ahead in the future and you’re wasting time on living today. So stop.”
Support and community
I love PanSupport. I was really looking for a sense of community and it was an online Teams meeting. The screen was full of faces with some of the Pancare team and they were just really sparking conversation around, “Has anyone got tips to help with this? What are people struggling with? How can we support each other?”
I really talked about food because that’s been one of the symptoms of chemo, losing my taste completely. It was great to hear, how using sauces, using gravy, can help. I was just, “there’s no point eating if you can’t taste the food, because I love to eat too.” That’s been a really big help because you need to eat, especially when you’re sick.
I tried to get my husband to do the interview, the carer and patient one, but he didn’t, he’s a bit introverted about doing that kind of stuff but he came around. Because he’s struggling with, “What do I feed you?” So he could have that conversation with that group of carers. And we got great tips around what to do, how do you make food more flavorsome, what meals to cook, that kind of thing. It was great, just for 45 minutes or so, to sit down and see all the different faces and the ages as well who were living with this. It’s wonderful.