The 'sell-by date' - an end of life chronicle

12/3/2014

By Judith Downes.

On the morning of Mothers' Day - March 10, 2002, I got a phone call from my brother in Australia.

"Are you sitting down"? My brother was not normally given to melodrama, so that caught me by surprise. "Is Paul with you"? Another surprise statement. There was something wrong, I knew it, and fear welled in my stomach.

"Remember I said I hadn't been feeling well lately...well it turns out I have cancer - and I have a 'sell by' date".

Just like that.

It was never Colm's way to waste words. Precise and to the point. "The thing is...I'd really love to see you guys, and mam and dad, if you can get here". He lived in Perth, Australia.

"How long do I have to organise this"?

The answer was not what I wanted to hear - how long was 'the sooner the better'?

I said we would be there.

My brother had been feeling unwell for a couple of months when he went to his doctor. His symptoms were very similar to those of irritable bowel syndrome (IBS). Indeed, the preliminary diagnosis was just that, IBS. It was only after some of his routine tests came back that the real problem was discovered. Colm had pancreatic cancer. He was forty-six years old, and his cancer was aggressive.

I have little detail of what happened in the weeks following his diagnosis, with one exception. He was offered a regimen of treatments which might well prolong his life, by a few months, but it would be gruelling, and would not cure his cancer. He did indeed have a 'sell by' date.

After that fateful telephone call, I spoke to Colm a few times by phone. He told me very clearly that his choice had been a simple one of quantity versus quality, and he chose quality. In hindsight, I think he made an informed decision that was right for him, and for his four daughters. He didn't want them to suffer the agony of watching him die slowly, so he declined the gruelling treatment regimen.

His daughters were young, ranging in age from four to eighteen. He wanted to enjoy life as much as possible with them, meet with family and friends, then leave. He wanted to die on his own terms, and in his own time.

Colm was nine years older than me, and had always been my hero. In 1981, he and his new wife emigrated to Australia, but although he wasn't a great letter writer, I never felt that we were estranged, just divided by a hemisphere.

Paul, my husband, was now faced with moving heaven and earth to fulfil my promise to my brother. We would travel to Australia with my parents.

The next couple of weeks were the most hectic of our lives - getting permission to bring my mother on a plane with two broken vertebrae was one of the easier bits. She suffered from osteoporosis, and had injured herself falling in her back garden.

Paul, as always, organised everything, down to details like having a wheelchair booked at every plane-change for my mother. His strength and support kept me together, as I became the brave family face, the picture of calm for my parents and children.

I almost went to pieces when my son, then eight, ran up to me in the house one evening - and in tears begged me to take him with us. "I'll pay all my Holy Communion money and I'll get the rest from the piggy bank...please take me, mammy, please don't leave me!"

That still hurts when I think about it. A few days later, we left our son and daughter with our best friends, not really knowing when we would be back. Our open-ended tickets gave us a window to spend as much time with Colm as necessary.

We travelled for twenty-seven hours before landing in Perth. My mother didn't remember a lot about that journey, a combination of shock and morphine patches. The patches, although quite strong, allowed her to sit and even sleep for some of the journey. Dad just wanted to get there and see his son. He hated flying and it was a bit of a white-knuckle event for him.

Australia was warm and pleasant when we arrived at Perth airport. Spring in Ireland, autumn there. My eldest niece and her husband ran to meet us as we exited the security area; tears and hugs, the bittersweet occasion was not lost on us.

Standing a few feet away beside his own wheelchair was Colm. Six feet in his socks, the brother I knew was strong and fit, and, although I admit to some bias, rather handsome. He was still tall, but so painfully, impossibly thin that a sudden gust of wind might carry him away.

I walked up to him and just hugged him. Would it hurt if I hugged too tight? Stupid things ran through my mind - but I know Colm would not have let go, even if it did hurt.

Colm was living in a hospice in a suburb of Perth called Subiaco, a half-hour drive from our hotel.

For the next two weeks we made that trip most days, 'springing' him from the hospice and sneaking him back well after the 10pm curfew. It became our little joke, buzzing the door bell and waiting for the nurse to admonish us for the late hours we were keeping. They were so happy for Colm having such a laugh with his family in his final days.

I had never encountered the work of a hospice before, and I was amazed at their holistic approach, their caring for my brother as a person, not a patient. There were no formalities, no major rules, no problems; just solutions. It was a community based on mutual respect and caring. Residents were given privacy or company, as necessary.

My brother was no longer receiving, at his own request, any kind of cancer treatment. He was offered counselling but he felt that it was more to stop the staff from worrying rather than any effect it might have on him. His room was bright and airy, with a window that opened onto the garden. He had a private bathroom with shower and toilet facilities. There was a radio/cd unit in his room, but Colm generally preferred to read. It was his passion.

Every day that Colm came out with us he was armed with an infusion pump to deliver painkillers, and a backup in a drinkable format - just in case he had a pain breakthrough. He told me it tasted like gin!

Those days with Colm were great. We had a wheelchair race down Hay Street one evening on the way back to the hotel - me pushing my mother and Paul with Colm. We lost, of course; the lads were too experienced for us.

Colm dragged us to some of his favourite places, and we talked for hours about our favourite authors, movies, art and wine. He loved all kinds of music, but he had a big thing for the Moody Blues - who were a bit before my time. I knew their stuff though, it was classic after all. We sat in the gazebo attached to the hospice, and watched the geckos and birds that visited while we sat.

He was still smoking - a habit I absolutely hate; but there was something relaxing in the way the smoke rose lazily and drifted away in the afternoon sunlight.

Nothing disturbed our little haven, except the occasional screams of my mother when a gecko would crawl up the side of her chair. Each time it happened hysterical laughter ensued from Paul, Colm and me! We laughed until we could no longer breathe, and tears rolled down our faces. Then we laughed some more.

Colm talked about the flowers surrounding the gazebo, pointing out his favourite - a large white rose with the most amazing fragrance. He mentioned it a few times over his final days.

We all laid white roses on his coffin the day of his funeral.

It was a week after we arrived, on the Monday, that he became quite ill. He wasn't able to come out with us that last day. The nurses spoke to us about how it was likely to pan out over the next few days.

It turned out that Colm had been helping an elderly man who was also living at the hospice, he had often met him for coffee and a cigarette, and he was close to woman of own age, also at end stage cancer. My brother was a bit of a hero in Subiaco Hospice, as much a friend and confidant as a patient. It's little things like these that help people get through impossible levels of grief.

When we asked how his health had been for the last few months a nurse confided to us, "Colm should have been dead weeks ago, I think he was hanging on for you to arrive. He is a very special man." We hugged him that night, and I admitted to him that he was my hero, which embarrassed him, and he said, "but why, I'm nothing special, and I'm not perfect."

"Because you're my brother".

The phone call came to our hotel room on Wednesday morning. Colm had passed away a short time earlier. It was the day before Anzac Day - April 24 - he even made sure that traffic wouldn't be an issue for his funeral! I hung up and went through the necessary motions on autopilot, just wanting to go back out to the hospice - because he was there.

It was about three months between Colm's diagnosis and his death. Quality versus quantity. Quality won.

As we left Perth city I switched on the local radio station - the silence in the car was deafening. I didn't want to hear my mother crying softly in the back seat, or feel the helplessness of my father. Paul and I were lost in our thoughts as the Moody Blues music drifted into the morning sunlight.

"Nights in white satin, never reaching the end,
Letters I've written, never meaning to send.
Beauty I'd always missed with these eyes before
Just what the truth is I can't say any more.
And I love you.

I knew he wouldn't leave without saying goodbye to me.

My brother was cremated the day after Anzac Day, April 26, 2002. We walked either side of the hearse to the cemetery in Karrakatta, with his ex-wife and younger daughters directly behind his coffin.

My mother, Elizabeth, never really recovered from the death of my brother. My sister had died in 1980 at the age of 20 from a brain haemorrhage, and in truth, no parent should ever outlive their children. Six months after she died, Colm left for Australia. I was 16 years old.

My mother's heart was broken when Sandra died, and when Colm left home she was devastated. Fathers are supposed to be the pillar of support to a family, and my dad, Robert, was the one who kept his head down, worked harder and tried to make everything seem normal.

I firmly believe that both my parents should have have been offered counselling after my sister's death in 1980, let alone after the death of their eldest child, Colm, who died in 2002.

My mother died in 2010, after a series of mini-strokes, and the eventual pneumonia which often follows in such cases. She was 77 years old. She never got over the loss of two of her children in her lifetime. Our own two children still miss their Nana, and their uncle Colm.

Epilogue:
This story happened in 2002, and it has taken me 12 years to put it on paper.
It still feels like yesterday...

 

 


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