Cancer's deadly reality faced with love

With love: Robyn Johnson (left) and partner Adrian Blackburn bravely faced the physical, emotional and financial ordeals cancer wrought on their lives. Photo / Supplied

Robyn Johnson died in March after a three-year battle with cancer. Adrian Blackburn cared for her. This is his account of their journey

It's under an hour since I left the little corner room. Just the need for a small break in that other world where normal life continues.

At 3pm, as the lift climbs, I see through its rear glass wall late summer sunshine on the trees. There's a brief pang of guilt at enjoying it when Robyn can't.

I'm only one step out into the familiar corridor by the nurses' station when I'm intercepted.

Since 7am, Kate Yeoman has been looking after my partner, just across the way, in Room 6 of Mercy Hospice Auckland.

The warm concern on Kate's face tells the story.

"I'm really sorry. Robyn has gone. Just five minutes ago. Are you okay?"

Her thoughtfulness, ensuring I don't just blunder unprepared into the room, is of a sort I've come to expect here over the last, tough few months.

"Thank you. It's all right. I'll just go in and see her."

The light in the room is muted. Blooms in a circular bowl on the bedside table are lit by a single candle.

Robyn is on her back, mouth slightly open, eyes closed, face tinged yellow. Her hands are pale, fingers wasted, as I know is the rest of her.

I lean over, kiss her on the brow.

"Goodbye Robyn, goodbye my love."

I have to stop writing now, take a break. It's only been two months. The grief is too great. But I've committed myself.

Well before Robyn died it was clear she was receiving exceptional care. The staff had become family.

"I can't make a big donation. But I will write something, maybe demystify a little what happens here."

It was May 2007 when everything changed. Robyn Johnson and I had been "going out" as they say, for four years. A mutual friend saw to it we met.

She left the lunch first, to return to a frantically busy job co-ordinating up to 150 community arts events a year. I held out my hand to say goodbye. Robyn looked straight at me, then kissed me, very softly, warmly, right on the mouth. Who would want to resist?

Four years later, our lunch café was so crowded and noisy it was actually possible to talk without fear of being overheard. Even so, I was startled.

"It's just that we've been going out a while now. If there's any reason you want to pull back from this relationship, you're free. I wouldn't hold it against you."

I was shocked. We'd never lived together. Robyn's full flat in Freemans Bay and my peripapetic house-sitting lifestyle seemed to preclude that. But in every other way this was the best relationship in my rather chequered romantic life: a wonderful blend of mutual independence, passion, trust, kindness and good humour.

"No, no way. I'm in."

Then she told me. I knew of unresolved pains in her side. But her GP had suggested physio, acupuncture. There'd been no suggestion of anything serious. Though quite recently she'd found a lump in her throat that seemed likely to be thyroid-related.

No. The biopsy showed a cancerous growth. Health insurance would pay for an urgent operation. And there would be a full body scan to try to find the primary malignancy.

In a moment, our relationship irrevocably changed. This time I was to be a carer, even more, perhaps, than a lover.

The "cancer" word infected the couple who were Robyn's most recent flatmates. Within days they had moved. Now there was space for me to move in, take up my new role.

The detail of the next many months of 24/7 care, most of it repetitive, and in any other context monotonous, has begun to fade, protectively perhaps.

The constant pain, for both of us, the awareness of how this deadly illness would play out, need not be revisited. But highlights - or low points - remain from the fog of memory: that first op, Robyn still working, when excising that mass in her throat severs the vagus nerve. Her lovely radio-trained voice becomes a rough, painful croak. First major loss.

Then the scan shows an abdominal mass. Heroic surgery may give a chance. But the surgeon rings from Auckland Hospital two hours too soon. I know immediately the tumour has progressed to become inoperable. Robyn's hopes of returning to her job become a mirage. Major loss number two.

Chemo is the next chance. But her rare - one in 200,000 - neuroendocrine cancer has a low rate of response.

And the Cancer Society orientation for new chemo patients sees Robyn looking more ill, pale, wasted, than anyone else there. An elderly man says to her, unprompted: God bless you.

But somehow the chemo starts the tumour shrinking.

Amid the weakness, the continuing fatigue, the vomiting and the indignity of hair loss (major loss number three), Robyn's appetite returns, and some weight. She's in remission.

Against the odds, and the financial realities, we grab the chance for six weeks overseas seeing family and friends back home. The mental pressure intensifies, even as the tumour sulks.

Robyn's legs move almost uncontrollably. Any trip out and she panics, hyper-ventilating. She needs psychological help, anti-depressants.

The weight starts to drop again. There's more pain. By last October, a new scan showed the tumour again on the move.

The hospice community nurse visits resume. She spends six weeks, over Christmas and New Year, in the hospice, then 3 weeks at home, a medication pump slung around her neck. I learn the intricacies of syringe changes.

Another awful night of vomiting. "I don't think I can do this, hon." More time in the hospice. It's become a second home.

Against the reality that people die, it's full of life, often laughter, a palpable sense of warmth and care from the staff and many volunteers.

Robyn still smiles, a smile so warm nurses go in to her room specially to be blessed by it.

Coming home again, Robyn is clearly happy to be in her own bed and in familiar surroundings. The routine begins again, daily trips to get new syringes, Robyn making it downstairs just in time for Coro St.

There's 20 friends at Erin's Sandringham villa on Sunday, February 14, to celebrate Robyn's 54th birthday the next day. It takes a long time getting her dressed, but we're not that late. Warm, happy, many smiles.

Another tough night of pain and vomiting and on the morning of February 22, hospice community nurse Jill and I wheel Robyn along the landing in my computer chair and almost carry her down to the car park. We've had just 11 days at home this time.

On March 2, Robyn's morning nurse, Barb, meets me. Robyn has had great difficulty swallowing her morning pills. She'd said: "Can I go home and play?"

Who with? Yes, her Mum.

Friday evening, March 5: Robyn is very sleepy but pain keeps breaking through. But when I kiss her she feels very warm, a lot of life still there.

In the darkness, I ask: "Are there things you want to talk about?" We both know that means tough things, about life and death.

Her response is just a murmur. "There's too much to say."

"Are you scared?" There's no response, though I'm aware of her lips moving.

Then: "I'd better get up now ... Come on, we need to go. To stay with you."

On Saturday night, little movements reveal her pain. The nurses, with their head-mounted torches cutting paths of light in the room, are quick to help. But the pain always gets through first.

Mid-afternoon Sunday and Robyn wakes, sees I'm dog-tired. "You need to go for a walk." How she can still be concerned for anyone but herself I find hard to believe. But she's right, the walk up College Hill and down through St Mary's Bay revives me.

In the night, Robyn's legs are cramping. I tackle mortality again: "It's like we're all on a bus, but you're getting off a stop ahead. It's a journey we all take, no matter where it ends."

A long pause: "I don't know."

Then: "We've been very happy."

"Yes."

Hours later, from my mattress on the floor, I sense a slight movement.

"Are you awake?"

"I can't stop thinking how much I love you."

Monday, March 8: I've sent a fresh email update, "Robyn is drifting". Fellow journo Nigel Wade sends a poem from England:

"For Robyn

You are loved and watched over by crowds of email addresses, cyber-sensitive friends gathered outside your window.

Invisible to you, everyone you know logs on to say this space between us is a virtual space, not real, we are with you, every day."

When I read it to her she smiles.

Tuesday/Wednesday, March 9-10: Robyn's last night.

Over the last couple of days there have been visitors, her sister from Brisbane, her childhood friend Heather from Christchurch.

Now Robyn's close friend Annie sits with Robyn as I take a brief break. The room is brightly lit when I return, the bouquets of flowers in the corner full of colour. Robyn has not responded to Annie, who is reading, but opens her eyes briefly when she hears me speak.

I take up the watch, soon turning out all the lights, except the one in the ensuite bathroom. A narrow beam through the door shows the pale shape of face against dark hair.

As the afternoon nurse, Erica, signs off about 11pm she says: "I believe I'll see Robyn tomorrow."

Pillows prop her up but her breathing is stop/start, heavier, and there seems to be fluid in her throat. I get the night nurse, Ruth, to raise the end of the bed to help.

Then it's her legs cramping up. More pain relief. Pillows are changed to shift her position, but she is restless, her breath noisy, sometimes moaning.

In the early morning, as the new day comes, her breathing changes: sometimes a little light panting, then softer, then a big gap - I count up to 37 seconds - before a series of catch-up breaths.

I prop my mattress against the wall and dress. I sit holding her hand, talk. I talk about all the good things in our life together. By the morning shift change she is noticeably weaker. Ruth says: if she chooses to go while you're away, that's her choice.

At one point she puckers her lips for a kiss. Her breaths are very shallow, no longer sweet and fresh but more like sweet decay. Her eyelids flutter sometimes. The sun shines in on her face and I adjust the blinds.

This is a new, bright day. There are morning sounds, the bong of the lift arriving, the rumble and rattle of the breakfast trolley, light, casual exchanges of voices.

Late morning and Dr Pam Jennings comes and sits. I ask again about Robyn's wish that her body go to the med school. "They've been inundated," she says. "But certainly her corneas would be needed."

Good enough. Robyn has no children. She would be happy to leave something of herself to help others.

There's some things I need to do at home. I'll be away under 40 minutes. Even so, I say my farewells directly.

She has not responded for some time. But when, at the end of the bed, ready to go, I purse my lips and make kissing noises, I see one cheek twitch, the beginning of a smile. And then, her lips pucker, as though to kiss me back. It's my last memory of her alive.

That evening, after all the necessary phone calls, funeral directors, Eye Bank, close family and friends, I'm at Mary and Warwick's place. "You're staying with us tonight. You're not to go back to the flat."

I beg a few minutes alone at their computer to put together a final email message to the 76 addresses in "Robyn's group":

Dear All who care for my darling Robyn, She passed away at around 2.55pm this afternoon (NZ time) at the Mercy Hospice in College Hill, Ponsonby, after a miraculous three-year struggle against an overwhelming enemy. When she was diagnosed she said to me: "Stupid disease. Kills its host."

She also said: "I'm not ready to check out now." So she didn't.

The last few days in the hospice have been very tough, with the cancer's grip on her liver tightening. Yet she remained always courageous, dignified, generous, thoughtful of others and full of grace. A wonderful example of how to live your life as a complete human being ...

In the meantime, here's to you all and the wonderful love and support which buoyed Robyn during her time with us. Fare well Robyn - the memories will never fade.

Love and death. Positive and negative. It's a seesaw balance I've been intensely aware of.

The inevitability and loss of death, yes. But when the seesaw came to rest, it was love that carried the real weight.

Robyn did her bit by simply holding on. She said it: I just want to be with you. And that's the most wonderful gift I've ever had.

For Robyn
You are loved and watched over
by crowds of email addresses,
cyber-sensitive friends gathered
outside your window.
Invisible to you, everyone you know
logs-on to say this space between us
is a virtual space, not real,
we are with you, every day.

Friend Nigel Wade's poem.