How our teenage daughter helped us all cope with her cancer diagnosis

In the end, there was an acceptance of sorts. I found what I thought would by my way. If the worst happened I would carry on, for the sake of the other two, for my wife, for her. I knew there would be pain, unbearable pain, but I found solace in the thought that all I had to endure would be another 10, 20 or 30 years and then it would be over. Life at that point would no longer feel like this precious thing to be treasured and celebrated. Life would be a sentence, but a sentence with a full stop. I just had to reach the finality of that punctuation mark and then it would be over.

That was the only way I could find to deal with the constant question screaming deep within me all my waking – and sleeping – hours: what if?

It was, I think, January 2 or 3, 2019. We’d enjoyed our usual Hogmanay ceilidh, followed by the birthday party for a friend which fell on New Year’s Day. It had been the same for years. This morning, though, something was wrong. My eldest, Niamh, 16 at the time and with a group of teenage friends staying with her to enjoy the legendary island celebrations, was shouting me from the hall. She couldn’t walk up the stairs. She was in agony, her left leg refusing to work properly. I filled her with pain killers and got her on the couch to relax. I presumed she’d pulled a muscle or strained a ligament during a strip the willow or dashing white sergeant. There was nothing to worry about. She was almost six foot, had grown rapidly over the past two years and was as willowy as she was beautiful. Pains in newly elongated leg bones made perfect sense to me. Especially after a ceilidh. A couple of days later she left the island to return to music college in Glasgow.

It must have been January 14 when I got the call. It was a Monday. I know that because the boat went all around the islands before reaching Mallaig. Niamh had been in agony for days and over the weekend her Auntie Jennifer, a doctor, had decided that Niamh had to be seen. I suspect she had an inkling of what was to come by that time. She had taken her to ­casualty where Niamh was x-rayed and ­immediately admitted. My wife Jackie called me on the Monday and said Niamh had a lesion on her femur. I called the primary school and arranged to have our youngest, Betsy-Mae, readied for a swift pick-up and ­quickly packed before heading for the boat. Attempting to quiet a rising panic, I drove to Glasgow.

Niamh was in the Queen Elizabeth. She looked well when we arrived but I could tell by the underlying mood all was not well. Everything seemed forced. Niamh was taken shortly after – it could have been the Tuesday or the Wednesday – for a biopsy. That ­afternoon the consultant spoke to myself and Jackie. Niamh had a tumour in her femur and it had spread to her lungs. We were given an appointment at the Beatson Cancer ­Centre and discharged.

I then had to drive back to Mallaig where her younger brother Finn, 14 at the time, was at school and tell him the news. That remains among the worst moments of my life. The pair had always been ­inseparable and I knew what I was about to tell him would destroy him.

I HAD thought that we’d had our share of bad luck, as if life’s quotients of misery are equally portioned and parcelled out systematically and with an abiding sense of fairness. Betsy-Mae had spent six weeks in intensive care followed by open heart surgery when she was barely three months. During those six weeks my father died of cancer. Surely, we’d had our portion in one go? Apparently not.

Our appointment at the Beatson came on January 22, 2019 – Niamh’s 17th ­birthday. We were told Niamh had a form of osteosarcoma, a cancer ­prevalent among teenagers and young adults with no known cause. We were told the tumour in her leg would have to be removed. We were told she had two ­tumours in her lungs as well as a couple of spots ­indicating the emergence of new tumours. We were told her treatment would take all year and she wouldn’t be able to stray far from a hospital during that time meaning she would not be able to return to her island home. We were told that because of the spread she was classified as having a stage-four cancer.

That night friends and family converged upon Niamh’s flat for a birthday party where she laughed and smiled and hobbled on her newly pimped-up sparkly crutches.

Her first operation came the following week when we travelled to Edinburgh’s Royal Hospital for Sick Children where a section of her ovaries was removed to be frozen in case the chemotherapy rendered her infertile. The professor there explained the procedure as Niamh sat emotionless. He stared at her for a while and then said: “You know why we’re ­doing all this, Niamh? It’s because we ­expect you to get better.” He was the first of the doctors treating Niamh to say this. We would cling to his words for the next 10 months.

THOSE first weeks were a maelstrom of emotions, appointments, disappointments, worry, fear and, unlikely as it seems, deep joy. We had been told that cancer was a journey and that we were about to step on to a conveyor belt where choice would be removed but that, among the horrors, the hair loss and the terror, would be moments for which we would be forever grateful.

The first of such moments came in early February when all five of us took a walk along the canal between Bishopbriggs and Kirkintilloch. It was cold and crisp and mist was rising off the water. Niamh was in a wheelchair – she could barely walk a few metres by this point – being pushed, violently, by Finn. Myself and Jackie walked behind as Betsy-Mae rattled about on her scooter and Niamh and Finn laughed and shouted as he repeatedly faked pushing Niamh into the canal all the while calling her a “dumb-ass cancer patient”. The ability of her siblings to lift her out of herself was incredible to watch, and something that she was going to draw upon deeply over the coming months.

Niamh on the day she went to have her hair chopped off and donated

Niamh chopped and donated her long blonde hair prior to her first round of chemotherapy. She wanted to feel in control so refused to wait for her hair to fall out. Losing her hair was, perhaps surprisingly, not one of her main fears. She never bothered to wear wigs – “they make me too hot” – and very rarely wore a headscarf.

Her mum gave up work the second Niamh was diagnosed and would sleep in a fold-down chair at the Beatson next to Niamh’s bed, always ready to help should Niamh need anything, day or night. I ­divided my time between our island home and Glasgow to try and retain as much normality as possible for Finn and Betsy-Mae.

Ten gruelling weeks of chemotherapy came and went. The tumour in Niamh’s leg had stopped growing but hadn’t shrunk as much as had been hoped. She was now facing the replacement of her knee as well as 18cm of her femur. ­Because anything and everything the tumour had been in contact with had to be removed she would also lose the bulk of three of her four quadriceps, with some of her hamstring muscles brought round to the front of her thigh to work as replacements. Learning to walk again was going to be a long, slow and painful process.

When he told us the news, the surgeon sensed our obvious upset. We had hoped that Niamh would be losing just part of her femur, meaning she would be able to walk normally just a few months after her operation. She was now facing an entirely different rehabilitation, with months of pain ahead and no guarantee she’d ever be able to walk unaided. The surgeon, however, brought us quickly back to the reality of the situation.

“Niamh has received a very bad ­diagnosis, remember,” he said. “What we’re going to do is what we have to do to try to save her life. That’s our only ­priority.”

He was right, of course.

HER operation took from 8am until after five in the evening. We got a call around six to say everything had gone perfectly to plan and that we’d be able to see her that night. The big fear was an infection setting in that would delay her return to chemotherapy. Her battered immune system had to be managed to enable her to return to her treatment as soon as possible or risk further spread. It was an anxious few days but within a couple of weeks Niamh was back in the Beatson and ready to start a further 20 weeks of draining chemotherapy.

IT is almost impossible to recall the emotions of that year. To be trapped in a well that dark and wonder, constantly, if there was ever to be any light while simultaneously focusing purely on that imagined light was exhausting. Constantly battling with thoughts of death while trying to remain inwardly calm and outwardly focused on the hopeful requires an internal dialogue that is ceaseless.

The strength to navigate that dialogue came from Niamh. From the outset her mum had told her that she would be fine so her attitude had always been that she was taking a year out and that was that. Simple. The reality did sometimes make things more complicated, however.

Nearing the end of her treatment, on one of the nights her mum had returned to Niamh’s flat for some respite while I slept at the Beatson, I was overcome with the unfairness of everything that was ­happening to our baby and began to cry. This had happened a couple of times and usually Niamh snapped me out of it swiftly with a roll of her eyes. That night, though, was different.

“You know, I wouldn’t change a thing, Dad,” she said. “Nothing.

“I’ve learnt this year what takes most people until they’re 30 to learn. All the things I used to worry about no longer matter. They will matter again, I suppose – I get that. But they’ll never matter as much.”

What she didn’t say, but I will, is that she had to look deep within herself for strength and found enough for five.

Niamh finished chemotherapy in ­September 2019. In October of that year she had surgery on both her lungs where the surgeon said he’d “cut out anything I don’t like”. Tests on what he did cut out showed only inflammation where the ­tumours had been and not a single living cancer cell. Niamh returned to college and to her life. Weaker but stronger.

She would probably say that her ­parents, her siblings, her grandparents, a phalanx of aunties and our incredible NHS got her through. But really, she dragged all of us with her.