Susan and Peter Erskine have been together for 33 years, and for four of those they’ve been waiting for Peter to die.
Strangely, the diagnosis came at exactly 11am on the 11th of the 11th, 2015.
But the Erskines now have a completely different affiliation to Remembrance Day – it was the day they were told Peter had six weeks to live.
“He wasn’t supposed to make it past Christmas,” Susan told Mamamia.
Samuel Johnson was faced with her sister’s terminal cancer. Post continues after video.
Peter was told he had terminal prostate cancer and it had metastasised and spread to his bones.
“My heart just sank and I started to cry. It was really shocking,” said Susan.
But Peter didn’t die and the New South Wales couple now just live in a state of limbo, waiting for the inevitable but having no idea when it will come.
Sometimes Peter is really ill, sometimes he feels better, sometimes Susan even forgets he’s sick.
“It’s hard to go to that dark place and then come back out of it and live again knowing there’s no chance of a cure.
“You feel like you’re living in a bubble,” Susan explained to Mamamia. “And I would give anything to go back to the day before this bubble.”
“There are people on the lucky side who don’t have to think about mortality, and then there’s us,” she said.
“You never really deal with death until you have to. We all think we’re immortal don’t we… even though of course we’re not.”
One of worst feelings for Susan is one of guilt.
"You feel ashamed for feeling it... in my dark moments I think how much longer is this going to go on? Which sounds awful. It's a hard thing to talk about."
"It can sound very callous," she added. "But it's such a big thing to live with."
Susan says her life is a bit "weird" and getting to a place where you can live with a loved one's terminal diagnosis takes a long time. She almost had to grieve it to accept it, even though Peter is still sitting on the sofa next to her very much alive.
"I see the cancer as an uninvited house guest. Sometimes it sits quietly in its room, other times it bangs loudly on the door. I want it to go, but I know that when it leaves my husband will leave as well.”
When the diagnosis first came, Susan found herself writing notes for his eulogy.
"I wrote it in his birthday card this year but I changed the tenses," she laughed.
As the saying goes, if she doesn't laugh she'll cry - and she's already done that extensively. It's exhausting.
"It's so hard and it's so huge that we do actually laugh about it sometimes because it's so enormous," she said.
The Erskines live their lives a day at a time now because they have to.
"But it's really hard to live your life like that," Susan said.
"It's this juggling act of having a bit of a future, but not a big future.
"Our friends are off to Europe next year, but we don't plan ahead that far. We think about what we'll do this Christmas but we don't think about what we'll do next Christmas," she explained.
"I've been saying his 'time is limited' for four years, so it's a strange reality we live in. We don't have a sense of time," she said.
As Susan describes, time is now a "tunnel with no end". A tunnel that gets pretty damn dark sometimes.
While she's past the shock of her partner's diagnosis, Susan has no idea how she'll cope when he's gone.
She will be out of the bubble where she exists in a state of limbo, but she'll be in a new bubble - an unknown one.
A new one without her beloved Peter.
Susan is a guest on the Cancer Council's new podcast The Thing About Advanced Cancer which will be launching next week. It will be available here.
Top Comments
I think you mean metastasised, not mastisted. (That’s not even a word.)
I remember this part, the waiting, from when my MIL was ill. It’s the not knowing what or when it’s going to happen that’s just so hard.
There are two aspects to this story that need to be considered.
The first, what is the benefit of doctors telling people how long they have to live when they don't know? We have enough research now to show the impacts on recovery and longevity of a positive mental state so doctors should keep their guesswork to themselves.
The second, just because doctors can't cure someone doesn't mean there is no cure and the person may definitely die. If the medical community would collaborate with wellness approaches that look at nutritional ways of building the immune system, as many cancer patients are now turning to, often successfully around the world, maybe the magnitude of 'terminal' diagnoses would look very different.
We should be very concerned about our cancer 'industry,' where we rely on the same people to fund the research as stand to profit from it. Pharmaceutical options get the most research dollars whilst preventive nutrition gets a pitiful amount of the same. It is time we put most money and research into a preventive approach to our health rather than a treating one. We do not want to be medicated anymore, particularly the younger generations. Our current health system keeps us in a state of being the worried-well and over-medicated living dead. We should aim instead to be healthy and thriving. Pharmacological-based doctors need to get out of the way.
OK. Big Pharma companies run multi-million dollar trials. When will Big Herb do the same? Your beloved "wellness" industry generates billions of dollars per year - so it's high time you asked them to start investing in producing objective scientific EVIDENCE, rather than simply taking money from vulnerable patients who believe anything they're told by woo-merchants.
As someone who is living with a life-limiting cancer diagnosis, I understand that it is a really personal decision regarding prognosis. Some people want to know how long they may have, while others prefer not to know. As my own oncologist explained to me there is a bell curve based on statistics, but these can often be a bit outdated due to the ever growing new medicines that are cropping up that improve survival rates.
There is such a misconception around research into cancer. I am constantly updated by my oncologist about new trials and understand the complexities surrounding cancer research, in particular that different cancers respond differently to new medications. One such example is immunotherapy. While there has been signs of success with cancers such as melanomas and blood cancers, there has not been much success with breast cancers. This is because the DNA of breast cancers is much closer in similarity to the DNA of healthy cells.
Research takes years before it becomes available in clinical trials and even then there is no guarantee that the drugs will work, so researchers do not make ‘big money’ from such research. Part of the problem is lack of commitment from the government. Most research money comes from charities, such as ‘Love Your Sister’ (which is one of the very few charities for which 100% of money raised goes directly to cancer research).
I do like the phrase "Big Herb" do you mind if I use it in future?
Nevermind, I'm gonna' steal it anyway ;o)
“Big Herb” sounds like an old guy you would meet in the bar of a country pub, who was a gun footballer back in the day. (And Guest makes an excellent point, wholeheartedly agree.)