The evolving COVID-19 situation has impacted all of us. For people affected by cancer, the pandemic has created particularly difficult challenges.
We asked our community to share how COVID-19 has impacted them.
This is Winnie Nguyen’s story of how COVID-19 kept her and her beloved mum Landa apart when Landa was dying from lung cancer.
COVID-19 complicated things a lot at the end of my mum’s life.
My mum, Landa, was a single mum to me and my brother. She retired three years ago, and six months later, in November 2017, she received the diagnosis of end stage lung cancer.
She found blood when she was brushing her teeth one day – she then realised it was coming from her lungs.
It was a big shock – she was so young, only 64 when she died.
We fought the cancer together for the last two-and-a-half years. I was with her at every doctor’s appointment and my husband was always as her chemotherapy treatments. Her initial prognosis was only around six months, so she did really well.
I now have a four-month-old daughter called Alannah. I wanted to bring some positivity into Mum’s life. My mum was a grandma for three months, but two of those she was very unwell. She got to spend four weeks with her grandchild when she was home with us.
Initially, she didn’t want to go to a nursing home because she was so young. However, I couldn’t care for her at home – she couldn’t walk on her own because she was dizzy and she needed constant care.
A race against time
My aunty lives in Hong Kong and she wanted to see Mum before she passed away.
The Australian boarders were gradually being closed to high-risk countries. I knew Hong Kong was going to be put onto the list in no time. We took that gamble, and we bought my aunty a ticket to come in three weeks’ time. I was so worried that she was going to contract COVID-19 on the plane.
She finally got here, and two days after that the borders closed to everyone. I had to ask my aunty to isolate, so she couldn’t even see my mum for 14 days.
I continued visiting the nursing home and I tried to Facetime Mum with my aunty, but she was already declining rapidly and she was drowsy most of the time.
During those 14 days that my aunty was in isolation, the nursing home made the restrictions for visitors tighter.
In the beginning, they checked if you’d been overseas, been in contact with anyone with COVID-19 or had symptoms. A couple of days later, they emailed everyone saying they had to restrict the visiting hours. You could only have one family member for one hour, twice a day.
Then, they said the nursing home was in complete lockdown. When it reached that point and I couldn’t go in I was really upset.
I emailed the facility manager asking for visiting rights under compassionate grounds as my mum was dying. I was able to visit for an hour, but an hour was nothing. She was asleep and then you’d have to leave. I didn’t even know if she knew I was there.
They said Mum was stable and not actively dying, so I was no longer able to see her. Mum could only communicate in single word answers. If you asked if she had pain she’d say “no”, but I wasn’t even sure if she understood the question. The TV would be on, but she would just stare blankly. Really, she wasn’t doing well at all.
I knew she was getting toward the end of her life.
In the beginning, I tried to be understanding and think about the other residents.
But I was still really upset. I stayed away for two days and then I couldn’t stay away any longer. I went to visit but I could only see her through the window.
They opened the window for me so I could talk to her, but she was still staring straight at her TV. She heard my voice and responded “okay”, but I don’t know if she really heard me.
That weekend I decided I needed to do more. I wanted to be there for her as much as I could.
I wanted her to feel supported and know that she wasn’t alone.
I needed to make sure my aunty who came all the way from Hong Kong would be able to see my mum after quarantine. I asked them to transfer my mum to a palliative care hospital. She was incontinent, in pain and agitated.
The nursing home’s palliative care nurse said the hospital may not have any beds available and they would likely have to restrict visitors.
I was willing to take that risk. They made the arrangements and contacted the hospital and called me to say they were going to have a teleconference meeting with the hospital.
I said our emotional needs and cultural needs were not being met, and our family wasn’t getting enough time with my mum.
In the palliative care hospital, you could have one family member at the patient’s bedside 24/7, and at the very end we could have up to four family members.
I said that was enough, and that I would like that.
They told me we would need to also make sure she’s suitable for transport on the morning.
The following day, one hour before the scheduled transport, I got a phone call from the care manager saying that Mum wasn’t well enough to be transported and there was a chance she may die in transport. So, we cancelled the transfer.She never got to the palliative care hospital.
But the nursing home finally lifted the restrictions because she was on the end of life pathway.
On that same day, it was the end of the 14 days quarantine for my aunty. That night at midnight, she packed her things and stayed the night with Mum.
At that stage my mum was no longer conscious – all the medications they gave her knocked her out.
“Not how I envisioned my mother’s final days in her battle with cancer”
Seven days later my mum died, and we were all able to go and see her.
COVID-19 robbed my aunty of those 14 days she could have spent with my mum when she was more awake and aware of her surroundings. I don’t even know if my mum knew her sister was there in the last seven days of her life.
Her funeral was simple.We only had four people in the church –just our immediate family.
The reality of COVID-19 is that many families are not able to see their dying loved ones and say their final goodbyes. Families are being denied the basic human right to be able to spend sufficient time at their bedside, which they desperately need in order to grieve.
This was not how I envisioned my mother’s final days in her battle with cancer would be like and I hope no one else had to experience what I had to experience. Not being able to see your mother when she’s dying is heartbreaking.
My mum and I fought this cancer together the whole way, and I felt like I wasn’t able to be there for her in the end.
Thank you for sharing your story with us Winnie.
We understand those undergoing cancer treatment, cancer survivors and their families and friends may have questions in relation to COVID-19.
If you are feeling anxious, have questions or need support, Cancer Council’s information and support line is available on 13 11 20 during business hours. Our specially trained team can provide emotional support as well as practical tips for minimising the risk of infection during this time.