My Dad’s Cancer Diagnosis Went from Curable to Terminal Because of Treatment Delays

Editor’s note: Lauren’s dad died on the morning of the 9th of September, a week after this article was published.

A few weeks into lockdown, VICE UK put a call out to some of our favourite photographers. We wanted submissions for photo essays that reflected the time we were living in – stuck inside, unable to leave the house for more than our government-allotted exercise time.

The eighth project is by Lauren Maccabee, who found out her dad had been diagnosed with cancer the week before lockdown, and spent the following weeks documenting their time together.

Below are some words she shared with us.

A week before lockdown started, my dad was diagnosed with bowel cancer. I’d been visiting my family for the weekend, socially distancing, and couldn’t hug him when we found out the diagnosis. I sat on the floor of the hallway, wrapped my arms around my knees and cried.

The cancer was stage 3, and curable. He needed to have up to four rounds of chemo to shrink the tumour, then there would be an operation to remove it. He was fit and healthy, at only 58 years old. It would all be fine. I began to document everything that was happening.

At the time, anxiety around coronavirus was extremely high – and anxiety for cancer patients even higher, with warnings being shared that anyone with a weakened immune system stood a higher chance of contracting COVID-19.

At the beginning of April, two days before dad was due to start chemo, his temperature spiked at 38 degrees. Medical professionals were convinced it was coronavirus, but he hadn’t left the house in two weeks, so it seemed unlikely. There were no coronavirus tests for cancer patients, when they desperately needed them. Three weeks went by. It turned out the temperatures were related to infections - not coronavirus.

At this point, we weren’t aware of this. We spent days doing jigsaws and trying not to overthink the situation. The photographs of dad in this article are taken over this period of time.

The delay to dad’s treatment was causing a lot of stress, and the days felt long. We knew he needed the chemo as soon as possible. There were still no coronavirus tests available.

A decision was made to bring dad into hospital for an emergency operation for an ileostomy, to have a stoma fitted. This is where part of the bowel is brought to the outer surface of the abdomen to release waste into a stoma bag.

The idea was that this would reduce the risk of a blockage in his intestine, which is life threatening, and “bypass” the infection site, where the cancer was, close to his liver. Dad would have the operation, recover within two weeks, then begin the chemo.

We would have lost a month, but it would be the right thing to do, and it would just mean more rounds of chemo. Due to COVID, we weren’t able to go to the hospital or visit dad. We’d agreed we would FaceTime as much as possible, and would send in cards. It wouldn’t be long.

It was a big operation and it didn’t go to plan. My dad’s intestine froze up – a reaction that sometimes happens with this kind of operation. His body rejected food and wasn’t functioning. He was incredibly ill, to the extent that he couldn’t communicate with us at all. We couldn’t visit or speak to him. Things were touch and go.

My dad had lots of drugs to try to deal with the pain. Because he couldn’t eat or drink, he had a drip and a line in his neck, which gave him the proteins he desperately needed for nutrition and for the wound to heal. This went on for days.

A week later, things still weren’t working. He was gravely ill, and reliant on morphine to deal with the pain. After a week of not speaking to him, he finally picked up the phone. I was in the dining room and my mum came downstairs and passed the phone over. I heard his voice on the phone to my mum. I felt myself burning up and I had a panic attack.

After two weeks in hospital, my dad was discharged. He hadn’t left his hospital room or had any visitors. He had lost over 10kg in hospital. There were shortages of the right food and the vital proteins that dad needed to recover. I held his hand all the way home in the car. We cried and sat in silence.

When we got home, it was clear something wasn’t right. He was a very ill man. He was weak and could hardly walk. The stoma wasn’t working, and the food he had eaten had nowhere to go. He should not have been discharged. That night, I cried myself to sleep. At 11PM my mum received a phone call from a no caller ID. It was a nurse from the hospital, who was calling to let us know that dad had tested positive for COVID upon leaving hospital. He had contracted coronavirus while in a “COVID-free” ward. We all froze. I felt sick. The next day, dad was readmitted to hospital.

The next few days were a blur of panic and anxiety. My dad had gone into hospital as a fit and healthy man, and come out weak, skinny and with a positive COVID diagnosis. And still no cancer treatment. In my parents’ house, my mum, my boyfriend and I all socially distanced ourselves from one another in the hope that we didn’t all catch the virus at the same time. In the news, there were more and more headlines about additional cancer deaths due to coronavirus treatment delays. It was all too much to process.

By now, there were finally more coronavirus tests available. My mum, my boyfriend and I each had a test, as we had been in contact with my dad. My test came back positive. I kept myself separate from the rest of the family and isolated.

Later, we received a call from the surgeon. Dad’s stoma wasn’t working - there was a kink in it. He was in a very bad way. No food could pass through his body. We had to operate as soon as possible, or he would die imminently. The operation went as well as it could have done, but dad needed to spend more time in hospital to recover, this time on the locked off COVID ward. We still couldn’t visit.

Dad was finally discharged in June, after nearly two months in hospital; two months in which we couldn’t see him. We needed to do everything we could to build him up for chemotherapy, which he so desperately needed. He was weak. Walking was difficult. His balance was off. He had developed strange tics as a coping mechanism for being in hospital on his own for so long. I meticulously planned meals which would hopefully help him build his strength.

Dad started to get pain near to where the cancer is. There were days when his temperature would go from 34.5°C to 39.5°C within an hour. Something wasn’t right. He began to have fevers and night sweats, which were debilitating. Each night, my mum would change the bedsheets, which were lined with towels, up to eight times a night. They were drenched with sweat. A nurse made it clear that he was not yet well enough for chemo. We were far off from that.

In July, my dad was admitted to hospital again. The night sweats were out of control. It was clear he had some serious infections related to the cancer, which we needed to sort out. He couldn’t move his body without his temperature dropping to be hypothermic. He was losing even more weight due to the relentless sweating. The hospital gave him IV antibiotics and did another scan.

The results were not good. My dad found out his cancer is terminal while on his own in a hospital bedroom. Due to all the delays with treatment and complications with coronavirus, his cancer is no longer curable. Chemo is no longer an option because of the infections he has. The course of treatment has gone from being curative, to palliative. We are completely devastated.

My dad is now at home, and we have a hospital bed in the living room. Due to his operation, his diet is limited to mainly beige foods and fruit and vegetables without skin or peel. Nurses and doctors come round regularly to administer intravenous antibiotics and ensure dad is comfortable and not in pain or distress.

Dad wrote a letter to the surgeon saying he was worried that he would be part of the statistic of additional cancer deaths due to coronavirus treatment delays for cancer patients. We now know he will be part of that statistic. It is heartbreaking to know that there are thousands of other families in a similar situation to ours.

Grief is something I am beginning to understand while trying to come to terms with what is happening. We have been told we most likely have days or weeks left. Our world has been flipped upside down. Over the last five months, everything that could have gone wrong has gone wrong. Coming to terms with that is difficult. There is a lot of anger and sadness that we are attempting to process.

My dad is the most wonderful man I have ever met. He is the best of the best. Kind and compassionate, sensitive and intelligent, with a wonderfully dark sense of humour. He knows when to say the right thing at the right time, without saying too much or too little. He is intelligent, always supportive and has incredible taste. His energy fills up a room. He is all the qualities a person should be. The best kind of person.

@laurenmaccabee