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How my parents’ intuition saved my life from lymphoma

·7-min read
(Images: Supplied).
Briony Benjamin was diagnosed with lymphoma in 2017. But if it wasn't for her mum's intuition, the doctors may have missed it. (Images: Supplied).

Read part two to find out how Briony’s cancer diagnosis impacted her finances and her advice for others.

It’s a scene out of a nightmare: the brightly lit hospital room, a friendly doctor, the sound of machines whirring and beeping and then that sudden, horrifying plunge into the surreal.

You’ve just been diagnosed with cancer.

What the hell happens next?

For Briony Benjamin, the weeks following her diagnosis - bizarrely - were some of the best of her life, followed by unimaginable pain and then a hopeful remission.

But if it weren’t for her parents’ instinct, she may not have even made it that far.

An almost missed diagnosis

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Video maker Briony was diagnosed with Hodgkin’s lymphoma on 3 November 2017 after feeling awful for 18 months on and off.

It had been happening for so long that the 31-year-old had lost touch with what it felt like to be healthy. She’d battled through a chest infection, frequent illnesses, exhaustion and severe night sweats.

She would wake up in the morning with her pyjamas so soaked she had to wash them after a single wear.

But her doctors kept saying she was simply worn out.

Their advice? Rest and meditate.

It was her parents who spoke up.

“My body was sending me all the signals but I didn’t know how to trust that and how to listen to it, so I just kept putting the pain aside and compartmentalising it,” she told Yahoo Finance.

They kept digging and digging and ended up - behind my back - calling my GP and saying, ‘We’re actually really worried.’

“My mum and dad kept interrogating me. My dad’s a vet and my mum was quite alarmed by the night sweats.”

Her mother knew a woman who had had lymphoma many years earlier, and so she understood the potential significance of Briony’s symptoms.

“They kept digging and digging and ended up - behind my back - calling my GP and saying, ‘We’re actually really worried.’”

Briony was referred to a specialist that week. Within 12 days, it was clear that she had stage four lymphoma. The cancer had spread from her lymph glands and into her bones, her hip and her shoulders.

The mystery was solved. Now the race was on.

In times of trouble, focus on the next three things

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Briony needed several courses of chemotherapy. However, one of the lesser known side effects of chemo is that it can stop ovaries from working effectively.

At that initial diagnosis, Briony’s doctor told her something she still considers one of the best pieces of advice. Just think about the next three things.

For Briony, that was getting some blood tests, attending an appointment with IVF Australia the following day and then thinking about freezing her eggs.

As a chemotherapy patient, the cost to freeze her eggs was greatly reduced from around $10,000 to around $700.

With the next few medical steps addressed, Briony focused on surrounding herself with friends and family.

It shouldn’t need a crisis to happen, but it seems to. But what’s more important than spending time with the people you love and telling them you love them?

Her sisters flew in from London and Canberra, her best friend from Kansas City and her parents and other friends rallied around.

It meant that the two weeks following the diagnosis were packed with dinner parties and conversations.

“I thought, ‘This is what life should actually be like.’ It was so funny because the week before, my housemate and I had said we don’t have time to have a dinner party before Christmas, we’re too busy.

“It shouldn’t need a crisis to happen, but it seems to. But what’s more important than spending time with the people you love and telling them you love them? That was a really lovely part of it.”c

The treatment and remission

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The nine months of treatment saved her life, but the experience itself was brutal, Briony said.

The nausea associated with chemotherapy is near constant, even with medication to take the edge off.

“It’s really like the worst hangover of your life and it just doesn’t go away,” she said.

The lethargy is also severe: Briony spent a lot of her time during treatment napping.

And while she did spend some time journaling during the treatment, Briony is glad she had enough savings to be able to take that time away from work.

She can’t imagine the horror of having to make money while also fighting cancer.

That was the worst part. I’m talking, 48 hours of just the most excruciating pain, just in and out of consciousness.

However, she was surprised that it wasn’t worse for the first few rounds of chemotherapy. She could go for walks, go to the shops and go about her life.

Things got hard at the beginning of the last round.

“I was feeling really weak, I was quite anaemic by that point. That’s when a lot of people sometimes have blood transfusions,” she said.

“The worst bit was having to take bone marrow injections every round. The younger and healthier you are, the more painful that is because you’re replenishing your bone marrow. That was the worst part. I’m talking, 48 hours of just the most excruciating pain, just in and out of consciousness.

“It feels like every bone in your body is regrowing itself.”

But then, remission.

She didn’t believe the doctor the day she was told she had cancer, and she also didn’t believe the doctor when they told her she was in remission.

It was at the beginning of her third round of chemo and she was feeling so unwell, she couldn’t understand how she could possibly be getting better.

“She said, ‘You’re in remission.’ I said, ‘What does that mean?’ She said, ‘That means we can’t see any cancer anywhere in your body.’

“[My sister] Molly was with me and my mum and my dad and we walked outside to the cafe outside of the hospital.

“We all just held each other in a big circle and we all just sobbed. My mum never cries - she’d just held it together the whole time and she just unleashed.

“I just will never forget that moment.”

Advocate for yourself - and take notes

Today, Briony Benjamin has a few pieces of advice for Australians. (Image: Supplied).
Today, Briony Benjamin has a few pieces of advice for Australians. (Image: Supplied).

Years later, Briony believes one of the key lessons from her lymphoma experience is to advocate for yourself.

If it weren’t for her parents’ prodding, she may have gone undiagnosed for years.

“Everyone also needs to be their own advocate,” she said.

Feel empowered to keep digging and just keep asking questions.

“I say that to women all the time now: you are the world’s leading expert on yourself. You are the only one who knows how your body feels. If someone is telling you that it’s fine, well you’re actually the only one who can be the judge of that.”

She said it’s critical that people trust their intuition and listen to their bodies.

“Feel empowered to keep digging and just keep asking questions.”

To do this, it also helps to keep track of your symptoms.

Before her diagnosis, Briony had gotten used to feeling unwell. She suggests people in similar situations keep a journal of their symptoms so that it’s harder for medical professionals to miss something.

“Take really detailed notes and keep track of it, because it all blurs after a long time,” she said.

“And when you’re with your medical professional, don’t let them off the hook. Always be polite but say, ‘What would you do if this was you? What are the other things we could be looking at?’

“It’s so easy to say, ‘Okay, no worries,’ and then another month slips by, and then another month.

“Keep digging.”

Briony Benjamin shares more about her lymphoma journey in Life is Tough But So Are You. Pre-order your copy here.

Read part two to find out how Briony’s cancer diagnosis impacted her finances and her advice for others.

- Are you a woman with a great money story? Get in touch here.

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