Cancer diary: Widow’s last months with dying husband navigating ‘broken health system’

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A 50-year-old Kiwi dad died five months after finding out he had an aggressive cancer caused by asbestos. Photo / Supplied

A 50-year-old Kiwi dad died just five months after being diagnosed with an aggressive cancer caused by asbestos.

Today his widow shares her heartbreaking diary of their experience navigating New Zealand’s ‘broken health system’.

Wednesday February 9, 2022

The hospital ward is extremely hot and the window is broken. There are no fans, so we ended up buying one and bringing it in.

My husband’s belly is starting to look as though he is pregnant. He has been experiencing night sweats and extreme fatigue. We don’t know what’s wrong with him.

He has been placed in a room with three geriatric men who are frail and disorientated. My sick and exhausted husband has frequently been getting out of bed to assist them back into bed to prevent them from falling.

He ended up spending three of his six nights in hospital sleeping on the couch in the visitor lounge.

Due to Covid restrictions, our 9-year-old daughter hasn’t been able to visit him so he has had to walk to the hospital cafe to meet her. She was quiet, appearing worried but didn’t say much.

His stay was by no means comfortable. The hospital was full and understaffed.

After various tests, he left the hospital absolutely exhausted and a lot sicker than when he went in. He really needed rest.

Tuesday, February 15

I meet my husband in the hospital garden. He was teary because doctors kept asking him about his exposure to asbestos.

Today, my husband – a builder by trade – discovered his sickness was due to probable peritoneal mesothelioma, a rare asbestos-related cancer.

We have been given minimal information and were discharged home the same day. He was advised someone would call in the next week or so from the Oncology Department.

Thursday February 24

After a nervous wait, we have been given the worst news any 49-year-old man or family should receive.

We are at hospital and an oncologist who is running late doesn’t have time to break this gently, so in a rush he confirms that my husband does have the rare and aggressive peritoneal mesothelioma cancer.

The doctor advises that without treatment my husband has 3-6 months to live, with chemotherapy possibly 8-12 months and if chemotherapy worked there could be a possibility of surgery, which may give him three to five years.

His widow hopes that by sharing their experience with a broken health system, they can try to better it. Photo / File His widow hopes that by sharing their experience with a broken health system, they can try to better it. Photo / File

My husband didn’t hear this properly, so I had to explain it to him after the appointment. Together we cried.

The oncologist didn’t have the time to explain the illness or a proper treatment plan or even answer any of our questions. There was an extreme lack of empathy and near to no bedside manner. I’d like to think he behaved like that as he had no time but we were later told by another doctor that this is just his manner.

The oncologist’s main concern was that my husband needed a B-12 shot that day so he could start chemotherapy the following week. It was 3.45pm and the doctor said I needed to collect it by 4pm as the nurses go home then.

After receiving this horrible news I was suddenly plunged into a mad dash. I had never been to Auckland Hospital before, it is a rabbit warren of a place and I had no idea where the pharmacy was.

I was in a panic trying to get directions to the pharmacy from the receptionist while pleading with her to ask a nurse to wait if I was not back in time. Luckily, a nurse overheard me and kindly found a B-12 shot on the ward.

By this point, my husband’s belly looks as though he is pregnant with triplets.

Tuesday March 1-Tuesday June 21: Chemotherapy

On the whole the chemotherapy nurses are amazing, they are clearly understaffed and very busy but somehow manage to stay upbeat and positive.

My husband’s treatment took eight hours, every three weeks, so we saw how their whole day went -they just don’t stop. On several occasions, he told the nurses that he would march with them at their next strike. He was in complete admiration at how hard they worked.

Given they are so overworked and busy that does lend itself to mistakes. During one treatment, a nurse went to administer an anti-nausea drug through my husband’s line, which he’d had before. As she administered the drug my husband screamed out in pain like I never heard before. We were advised in her haste the nurse hadn’t flushed the chemo line. My husband described this as being injected with acid. He had a mild PTSD following this incident and was quite nervous with every following treatment but he had no choice than to continue.

His 10-year-old daughter will remember her dad's love for sharks and the ocean. Photo / SuppliedHis 10-year-old daughter will remember her dad’s love for sharks and the ocean. Photo / Supplied

While under cancer treatment you are assigned a specialist nurse who acts as a point of contact. I’m not sure how many patients they have each but we only met our nurse once. She never called or returned calls; we were in the dark with no idea of the plan most of the time.

We saw her on the chemo ward once, after I and the chemo nurse spent time trying to contact her for information. I like to think she was over-worked as opposed to non-caring.

Friday April, 8

Today is our daughter’s 10th birthday, possibly the last one she will have with her dad. We are letting her take the day off school and we are heading away for the weekend. She wants to do an escape room.

My husband has a phone consult with the oncologist. I usually listen in but I didn’t this time because it was our daughter’s birthday and we thought it was just going to be a call to check how he was feeling after chemotherapy.

The plan was he was going to have three rounds of chemotherapy and then a CT scan so the oncologist could decide whether surgery could be performed. We were told we needed the chemo to shrink his tumour before they could operate, otherwise surgery would be too life-threatening.

So far, he had only undergone two rounds of chemotherapy. He hadn’t had a CT scan or a physical exam.

Before he died, he embarked on a fishing charter with some mates to celebrate his 50th. Photo / Supplied Before he died, he embarked on a fishing charter with some mates to celebrate his 50th. Photo / Supplied

However, during this phone consult the oncologist advised my husband that he was not a surgical candidate and operating was no longer an option. This was a shocking blow to my husband. I was not on the call so assumed he had heard wrong but he was adamant he didn’t. We almost fell out over it but decided it was our daughter’s birthday, let’s just enjoy that and sort it out on the Tuesday at his next chemo treatment.

Tuesday, April 12

While my husband was having chemo, I spent the day trying to find the specialist nurse to get to the bottom of the phone consult. The receptionist was less than helpful. She looked at me with great annoyance and said that she’d never heard of our nurse, despite her working in the same unit. She made no attempt to assist any further and told me to ask someone else – luckily the chemo team helped me.

Our specialist nurse confirmed my husband had been given incorrect information from the oncologist. He was meant to have another scan after his third or fourth round of chemo and then a decision on surgery would be made.

How can a specialist oncologist get it so wrong? How many people believe what they are told without question and just go home and die?

Friday, May 20

We have been advised by a different doctor, whom we haven’t met before, that the treatment isn’t working and that my husband has been referred to hospice for palliative care.

While at the hospital for cancer treatment and specialist appointments you are entitled to free parking – this works by giving the receptionists your ticket and they give you a free pass to get out.

After receiving the news that my husband was dying, the receptionist snatched my parking ticket out of my hand and threw the free pass at me. It was inhumane and disgusting behaviour.

I’m a medical professional and this was unacceptable.

Scheduling this appointment was also a nightmare. As we knew this would be when we’d find out if chemo had worked, we were clear we wanted the appointment to be in person.

This appointment was cancelled late notice and re-scheduled to the next week for a phone consult. Then a letter arrived stating the original day and time but, again, not in person. It’s so stressful when you are dealing with an illness, all hopes pending on D-Day, which we had emotionally prepared for, and then you have admin errors on top, which you have to chase up with calls to resolve.

Tuesday, May 24

I have been taking my husband to the majority of his appointments but with a child we needed transport back-up.

Today, the taxi driver – provided by ACC – was running late and refused to drive my husband up the ramp to drop him at the hospital door. It would have taken him an extra minute, at most. My husband was dying and had to walk up the ramp on his own and nearly collapsed.

Monday, June 13

My husband’s taxi didn’t show up as the driver had a flat tyre and there was no replacement taxi. He was due at hospital at 8.30 am to get his stomach drained and undergo a blood transfusion. On morphine, he drove himself one and a half hours to hospital and then home again.

July 6

My husband has been at hospice for 10 days now. He is on his death bed and the oncologist rang to ask why we weren’t in her waiting room – he had an appointment we knew nothing about.

I told the doctor that he was in hospice, palliative and near the end. She didn’t have a clue. Totally unprepared. It would all be in his notes, which she has access to. The worst thing was after informing her of our situation she asked: “will he be having more chemo?”. I was quite firm – NO – this was stopped two weeks ago as he was no longer well enough.

He's been gone two months now and, his widow says, the shock still hasn't worn off. Photo / SuppliedHe’s been gone two months now and, his widow says, the shock still hasn’t worn off. Photo / Supplied

We had also planned for my husband to come home from hospice tomorrow and had arranged with the District Health Board for a hospital bed to be delivered between 2 and 5pm.

At 3.45pm, the driver called me to say he’d found our invoice at the bottom of his pile and didn’t have time to deliver the bed. On discussion I found out he was nearby and did have time. He then advised he didn’t have enough petrol. This man was employed by a company that specialises in delivering medical equipment and was contracted by the DHB. I called the head office to complain. The driver arrived within 40 minutes.

The driver was in a rush and shouted from the top of our drive, “do you want me to bring it in?”. To that I replied “no, he will sleep on the front lawn”. Luckily my dad – who is in his 70s – was here to help as the driver didn’t know how to deassemble or reassemble the bed. The bed didn’t fit through our larger-than-average front door. The driver kept trying to leave before the job was finished – I wanted to assemble the cables and plug the bed in before he left but he didn’t know how to do that. Poor service.

We were young to be in this situation. I’m guessing most of their clients are elderly. I’m not sure how they would cope with that.

My husband never made it home to use the bed.

Thursday, July 7

Up until this point, the penny hadn’t dropped for my husband that he was dying. He had been full of hope and denial.

Today, he couldn’t walk 15 steps to the bathroom. For the first time he started to talk about his funeral and his final wishes.

We were planning to move into the hospice flat for the weekend. I left him at 8pm and by then he was back walking around his room chatting normally.

My daughter was staying with my parents and to keep her spirits up they let her dye their hair – one blue and the other red. I sent a photo to my husband.

At about 10.30pm, he replied saying “pure punk”. That was the last message I ever got from him.

A rainbow appeared with seconds of the Kiwi dad taking his last breath on earth. Photo / Supplied A rainbow appeared with seconds of the Kiwi dad taking his last breath on earth. Photo / Supplied

Friday, July 8

A hospice nurse called this morning to tell me my husband had woken up talking to his ancestors and said he was seeing lights, which apparently is a sign that he was close to his death.

By the time we got there, he was laboured breathing, his eyes were only partially open and he was unable to talk. It was clear he was moments away from dying so we called close friends and family to say goodbye.

He couldn’t talk, we all just kept saying “we love you” until he took his final breath.

It was one of those days where it had been raining non-stop. The room was quiet for about 10 minutes but the split-second after he died, someone said “look at that rainbow” and the rain had stopped.

Two months after his death

He’s been gone two months now and the shock still hasn’t worn off. He had a bucket list but because he got sick so quickly he couldn’t do any of it.

He was meant to go to the Darts Masters in Hamilton two weekends ago for his 50th birthday but he never made it.