06 Jun Marlene lauds McCulloch House experience
As Marlene Parsons prepared her personal items for her discharge from McCulloch House, she reflected on what was an immensely positive stay with Monash Health’s palliative care team.
“I’ve never been in a place like this; even though the life-saving stuff is around you, you are home,” she said.
“It’s got this sense of calmness and peace about it. It really is beautiful.
“The physiotherapists, the OTs, the nursing staff, the doctors, everyone – even the lady who brings me my meals – they’re all wonderful.
“The surgery has given me freedom. I can play with my grandkids – I’m not going to be ‘nanny in the chair’ anymore. It’s my life again. It’s going to be a hard fight to give it up. I know that time will come – but not yet.”
Around two and a half months ago, Marlene rolled over in bed in excruciating pain.
After a trip in an ambulance and a CT scan, she found out she had multiple fractures and degenerative issues with several bones and both hips, in particular. It was another part of a 26-year journey since Marlene was diagnosed with stage 3 breast cancer in 1993.
“When I was first diagnosed, my kids were 7 and 9. I was told to “go home and enjoy life” as I’d been given 6-12 months to live.
“So I decided to get on with things and I advocated for myself and I got onto a trial which used stem cells to treat my cancer. The trial was brutal but I got through it.
“Seven years later, three more nodes were found in my armpit and I underwent radiotherapy. Then in 2008 I was diagnosed with metastatic cancer, which meant it had spread to other areas of my body – in my case, the liver and spine. The treatment for this was mainly in the form of estrogen-blockers, which I took for about eight years. The past two years have involved active chemotherapy.”
When she was told about her fragile hips, Marlene was at a loss in terms of what to do.
“Orthopaedic surgeons had ruled out a hip replacement or even a band across the hips which could be screwed in, because my bones were too brittle. Once again I was told to go home, only this time I was in a wheelchair.”
Marlene discussed the situation with her breast care nurse and began looking for a clinical trial somewhere that could offer hope in the form of stem cells or glue.
“I thought that I’d probably have to go overseas for such treatment and then I found out that Monash (Health) was doing osteoplasty (gluing of the hip bones), which was incredible.”
Monash Health’s palliative care team has the expertise to utilise the services of multiple specialists and for Marlene the osteoplasty would be performed by the interventional radiology team.
With the encouragement of her oncologist and GP, Marlene made arrangements for the four-hour commute from her home in Gippsland.
“My trip here was a little different. Loch Sport, the small town in which I live, has an ambulance service so I was loaded into one of them in the rain before a switchover took place on the side of the road with a paramedic in another ambulance from Sale. It was eleven o’clock at night and there were kangaroos and cows witnessing this bizarre changeover on a lonely stretch of road.”
Marlene’s response to the surgery was emphatic.
“It has knocked me for six to feel how good this has been. When I came in, I was largely pain-free provided I was lying still but I was highly medicated and unable to drive my car, which was a big blow to my independence. Since the surgery, we’ve been able to lower the medication so much that I’m out of the wheelchair and walking; I feel completely competent to drive in the coming weeks.”
Beyond getting back behind the wheel, a driving motivation in her recovery has been the prospect of spending more time with her family.
“I have two sons, who now have partners, and two grandkids. They are my life and that’s why I fought so hard (after my initial diagnosis)… because they were so young.
“I wanted to stay around long enough for my kids to be old enough to feed themselves. When I was diagnosed again I wanted them to be able to iron a shirt and have careers. The next time (I was diagnosed) I wanted them to have a partner so that on the night I died they’d have someone to hold them. We’ve met each stage but grandchildren were never in my considerations, so now that we’re here, I want kindergarten, I want school – I want to be there for those milestones.”
The support 60 year-old Marlene receives has extended beyond family.
“I’m in a metastatic (support) group and I went online with them this morning, and it was a really bad thing because there’s three members who’ve been told that they have no more treatment options available. That’s really hard to take but I’m in a group that understands me, and that is amazing. I know my mortality is there, and every time we lose a woman (from the group) it stares you right in the face – but I never feel like it’s my time yet.”
Education, belief and self-advocacy are skills that Marlene credits as being crucial to her ability to overcome the many hurdles she’s encountered and forms the basis of her encouragement for others.
“Believe in yourself. If you don’t like what you’re being told, get a second opinion. Get a third opinion. If they are all saying the same things, then at some stage you may have to accept their opinion but always advocate for yourself – no one will advocate better than you.”
Marlene points out that the word ‘palliative’ is often misconstrued and she needed to reassure her family that she hadn’t come to McCulloch House to die.
“We’ve got to get the message out there that ‘palliative’ means living well with a life-limiting illness. It doesn’t automatically mean that death is imminent – I’ve been palliative for ten years. I’ve been off chemo for two and a half months, my tumour numbers are down, and I haven’t felt this good in five or six years. I’ve got confidence that my hip will help me get to where I want to go over the next two years, three years, whatever it is.”
Regular check-ins with the palliative care staff provide ongoing support.
“They ring me every Wednesday and we debrief about the stuff you can’t talk to anyone else about.”
Marlene says she hopes one day to return to McCulloch House.
“This place has been like a second home. I want to come back here at end-of-life; I feel like this is the place I need to be. The garden here is like a sanctuary; I’m able to go out and sit in the sunshine, just like I do at home. It’s been a huge factor in my recovery. I’m just so thankful that somehow I got here.”
Gratitude has been a hallmark of Marlene’s response to her cancer journey.
“One thing my condition has taught me is to appreciate every day. When I can get out of bed and put my feet on the floor and stand up, it’s a good day. It doesn’t matter how crappy I feel; if I can get out of bed, it’s OK; it’s a good day.
“I wish everyone could appreciate the little things rather than the wanting, wanting, wanting: the trips and the cars and the houses. Family and friends are what’s important. Health? Yes, if you can have it, but if you’ve got the others, you’ll be OK. Take time to smell the roses.”