After his partner died, *Brian refused to leave the house.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
Eventually he ran out of food and didn’t have much choice in the matter.
When he did venture into the streets of Albury, ugly thoughts started to surface.
“Every time I saw someone who hadn't been kind to their body, I thought, ‘Why haven't you got cancer?’, ‘Why haven't you died when my partner did?’, which is horrible, but that’s just how I felt,” he said.
“It changes you and your perspective of the world.
"You’d run into people and they’d be complaining about this, that and the other, and you just think, ‘You have no idea what a problem is’.”
Brian wasn’t expecting to have those feelings.
“The caring role becomes all-consuming, all you're focusing on is when the next set of drugs are due, when's the next appointment – nothing else really matters,” he said.
“Then from the day after she passed away for quite a while later, I was feeling lost.
“The next feeling that overwhelmed me was guilt. I felt incredibly guilty that I didn't save her.
“And I put that down to just me, I held that in me thinking ‘I'm the only one who must feel like this’.”
And he felt alone in his guilt until someone burst the bubble.
“I found out about a program Cancer Council does called Family Connect, where you actually talk to a volunteer who's been a carer of someone with cancer,” Brian said.
“When I was speaking to the volunteer, she actually asked me, ‘Has the guilt kicked in yet?’
“There were times on the phone where she'd say something, and there would just be silence, because you'd just think, 'That's exactly what I feel’.”
This support came much too late for Brian, who lost his partner in the past year, but only received help after she had died.
So many times they came through the doors of the Albury-Wodonga Regional Cancer Centre, caught the lift up to see the oncologist, and then left – but no one mentioned the Wellness Centre on the bottom floor, dedicated to providing emotional support to people going through cancer and their loved ones.
He only found it by “wandering around the place”.
Hearing this about Brian’s experience frustrated Jenny Jensen, who became a Cancer Council NSW advocate after losing her son Ricky to cancer in 2010.
“Oncologists have got to realise that yes, you can diagnose, but you need to then refer,” she said.
“We’ve been telling them for a long time now we need supportive care, and they are getting better.
“What they say goes in one ear and then out of the other, and you get out of the room and go 'What just happened?'
“If you can then ask questions of somebody who can support you, it doesn't take the pain away, but it gives you some reassurance.”
The Wellness Centre offers a range of supportive programs – all funded by donations from the Border community through the Albury-Wodonga Regional Cancer Centre Trust Fund – but will step up the offering with a clinical psychologist to be appointed in coming months.
That two-day-a-week position will be funded by the trust fund.
And the first time an official carer support group will be formed, with a dinner on Monday night hoped to be a starting point.
Jenny said the support group was intended for all types of carers, on any part of the journey.
“There’s young people caring for older people or parents, parents caring for young children, and parents caring for adult children – there’s such a varied range,” she said.
“My daughter, Carly, was sick as a baby, and I had taken on everything, I’d made all the decisions, but Ricky was an adult.
“I would be in the room asking about something and he would look at me like ‘Mum, shut up’.
“And that upset me, and the leukaemia support girls said ‘Look Jen, his body is out of control, he needs to control what he can, so give it to him – then out of the room talk to the doctors’.”
The experience and needs of each carer are different.
Where one person might appreciate a weekend of respite, for Brian, he didn’t want anything to do with it.
“The way I looked at it was, you've got another human that you care a lot about, and you enter into a contract with this person, for want of a better word,” he said.
“They put their complete trust in you to do everything for them.
“As the person gets sicker and sicker, there's no room for any embarrassment.
“So when they would offer for someone to come in and do showering, do meals, I thought, ‘That’s my job’.
“What I needed, and what I didn't get until right at the very end basically, was moral support, emotional support.”
Brian wished he had known about the Cancer Council program before his partner died, because it was “the most helpful thing”.
He hopes to return the favour, but later down the track – there’s a lot of healing to come yet.
Brian knows if he had read this story a year ago, he would have thought ‘That’s not for me, I don’t need that’.
But he now realises how important just having someone to talk to is, and hoped other carers in the community would not let fear stop them from reaching out.
A huge element, as Jenny knows, is meeting someone who has reached the light at the end of the tunnel.
“Yes, we know the person going through the illness is a sick person, but you are also so impacted that you need to look after you,” she said.
“Because if you do, you're going to be a much better help for that person.
“I look back now over the last eight years, and I think about the people I've met and the things I've done.
“Ricky wanted to do it all – he was about ready to sign up for a bike ride to raise money – but he couldn’t.
“His life was cut short, but I've been able to do that for him and I know he would be proud of me.”
- The carers dinner, supported by part of a $5675 grant from the Rotary Club of Albury, will take place from 6pm at the Wellness Centre on Monday. RSVP to (02) 6064 1562, or wellness.centre@awh.org.au.
- *Brian is not his real name.