“I Lost my Soulmate During Level Four – Why Lockdown Was A Relief & How I’m Coping Now”

Fitness trainer and Auckland mum-of-three Anni Monk has been living under the shadow of cancer for several years. Firstly, when her twin sons were diagnosed with a rare form of cancer that attacked their soft bone tissue and then again when her husband Andrew was diagnosed with stage four bowel cancer last November.

Heading into New Zealand’s Level 4 lockdown, Anni (35) anxiously hoped Andrew could ‘hold on’ until their children were allowed to visit him again. Sadly, he died while in rest home care during the second week.  She shares her story with Fleur Guthrie.

Andrew had been in hospice for five weeks when most people are usually there for a lot less. He was really sick and wouldn’t wake for days, his lips were blue and we’d all think ‘this is it’. And then I’d arrive the next day and he’d cheerily say, ‘Oh hey how’s it going?’ and I’d be like, ‘Dude! You just had a three day nap!’  He did that so many times. 

So just before lockdown, Andrew was moved to a local rest home where I was doing a lot of the care. Our boys (Owen, 13, Cian and Ruary, 5) saw him one Saturday and two days later we were told the rest home was no longer allowing visitors aged under 18-years-old. We didn’t get a warning. The boys understood why though, because Covid-19 had been talked about at school. So from then, FaceTime calls were the only communication they could have with him.

The rest home was really awesome about letting me visit and I knew there was only one other person being let in, who also had a spouse at the end-of-life stage. It was nerve wracking for me. I felt a bit like a sneaky ninja with a mask on… straight to his room and shut the door.  I went from being with him all day to being there for two hours a day.  

I feared that Andrew would pass without the boys saying a final goodbye in person. Every day when I left him, I would say: “Remember, you’re not allowed to die in lockdown!” The same reply came. “I’ll try not to”. 

Andrew in hospital with son Cian

The night before Andrew died, he had asked me to spend the night because he knew the kids were at his mum’s place. All night long I heard a whackwhack sound. He didn’t want to go to sleep, so he was lying in bed on his phone and his phone kept dropping onto his chest -making the whacking noise – because his hands had stopped working.

The next day, he had a lot of anxiety and I was trying to talk him through it. He went to sleep and died at 7.45pm that night. 

While I packed up his room by myself, I called a friend and we were on the phone the whole time so I didn’t feel lonely waiting for the doctor to come. I rang my mother-in-law to say I was driving to hers, so I could tell the kids first thing in the morning. It was surreal. I’m a very practical person so the thoughts going through my head were I needed to get some sleep and then figure out our new normal?

This may sound strange, and while it was hard not having friends around to go through it with me, I found lockdown a godsend. I know other people who lost loved ones during lockdown were destroyed by not being able to have a funeral. But for me, it was a relief. It meant I wasn’t thrown into planning this big event, which is what a funeral is. I knew it’d be my job as the widow to comfort everyone else. I was thankful I didn’t have to make small talk with people who might’ve said things like: ‘I was in his maths class in 1987’. 

In the end we got him a plain MDF casket (because he was getting cremated) and the boys got their felt pens out and drew messages and pictures all over the casket. Andrew’s mum was already in our bubble and we received so many messages from people supporting us. Andrew would have turned 40 in September, so we might do a memorial service then in the form of a birthday barbecue. 

I think people expect me to be sadder than I am, but while I did just lose him two months ago, it’s actually been 18 months that I first started to grieve the loss of the awesome husband and father we had. 

Andrew was diagnosed with ulcerative colitis when we first started dating 18 years ago so we’d been battling what we thought was a ‘flare up’ for over a year.  He’d go to work, come home and go straight to bed.  No energy, no involvement in our family life… he wouldn’t even come to the table to eat with us. (I now realise that cancer and depression go hand-in-hand and he was living with both).

Moving forward… Anni has been through hell, but is grateful Andrew’s suffering is over

He refused to get a colonoscopy and fought against going to the GP or hospital even though he had bleeding.  Andrew had massive ‘white coat syndrome’ from the trauma of ulcerative colitis over the years and from when our twins were in Starship Hospital fighting Langerhans cell histiocytosis (LCH). 

One night he had trouble walking and his mother and I forced him to get into the car to go the emergency department and he was not happy.  A colonoscopy revealed a 1-2kg tumour which had grown from hip bone to hip bone and into his glute.  

Although inoperable, the doctors hoped to shrink the cancer with radiation but the tumour grew at a rate faster than the radiation could shrink it. I’m a big believer in supplementing with natural medicine, so we did that too.  I knew it was grim, however we didn’t know if he had two weeks or two years left.  I lived in limbo really. My personal training clients were awesome because I left them high and dry for six months, but they said they’d wait for me and I returned to working with them last week. 

People say to me all the time, “I don’t understand how you’re so positive through all this or how you seem to doing so well?” But there are always things to be grateful for and my faith in God has helped hugely. When I was going into Starship every single week for a year for my son Cian’s chemo and seeing all those kids with no hair and NG tubes inserted, it puts life into perspective.  I thought:  ‘What good is it going to be for me to be stressed about things I have no control over all the time’. I’m not saying it wasn’t a stressful time – it totally was! – especially when you’ve got two other kids at home. But I couldn’t afford to be super uptight about every little thing. I wanted to be mentally healthy and strong for everyone else. Caffeine helped too.

My twins have now been given the all-clear now and will continue to have scans once a year until they’re 10. All the kids are doing well in the wake of Andrew’s death and what’s helping them is the knowledge he’s not suffering anymore. I tell them, ‘We have to remember Dad’s been sick for a really long time and yes it sucks for us, but now he doesn’t have that pain anymore’. We got given a cute children’s book called The Invisible String, about a grandma dying, and they now they talk about the invisible string of love between them and their Dad.  

I’m glad Andrew’s fight is over, even if it breaks my heart. We’ve been together since we first met in Cincinnati, when I was 17. Andrew was studying in America and his college roommate was dating a relative of mine. We met at their wedding rehearsal and became inseparable from then on. We knew we wanted to raise our children in New Zealand and even though my family is in America, I’m choosing to stay here because it’s my home. 

June is bowel cancer awareness month – visit bowelcancernz.org.nz for more

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