Saskia's Story

In 1995, Saskia and I lived in the harsh West Australian outback town of Kalgoorlie. Living in a desert town, we battled the heat and dust of the goldfields. Saskia ran a mine site office, as a mine manager's personal assistant.

She looked radiant and tanned when she flew off to England, to holiday with her parents. During the three week holiday she was complimented by friends on how well she looked, full of health and vitality.

Then she tripped over in a living room, stubbing her toe. Within a few days, her leg swelled up, pain moved up to her hip, and she occasionally felt feverish. With a long return flight looming she sought medical advice. Doctors, unable to find a problem, thought she was looking for a flight upgrade, and prescribed painkillers.

"The flight was ghastly. The being alone, not knowing what to do, being in pain, vomiting, not being able to eat anything."

The happy return was a sad sight, as I ferried my wife to the accident and emergency unit of Kalgoorlie Regional Hospital. Intravenous morphine was administered for the unbearable pain in her hips and legs. With a suspected blood clot, a series of tests was immediately started. A simple blood test would tell medical staff the truth.

"It was complicated, because the doctor was a personal friend of mine, and she'd never had to say or break serious news like that to anybody, so I could see the distress in her face before she'd even said anything. I just looked at her and said, ' is it cancer?' . She said no, well not exactly, but yes it's a kind of cancer. We think you've got leukaemia."

"My first thought was, 'what's that?' "

Staff booked us on a Royal Flying Doctor Service flight to Perth. It would leave in an hour, and would I like to go home and pack a few things.

The Bone Marrow Transplant and HIV ward, of Perth Royal Hospital is on the 7th floor, with spectacular views over the Swan river. Fresh paint and art works on the walls, and nursing staff that took time out to make relatives toasted sandwiches or hot coffee, gave this ward a feel all of its own. A subdued lounge, quiet and comfortable, where everyone had a story, not all wanted to tell.

In her room, a team of doctors and a haematologist gathered. Saskia had shown the first classic sign of chronic myeloid leukaemia (CML), the Philadelphia chromosome. The 21st X chromosome, had a small length of its left leg snapped off.

To slow the proliferation of genetically damaged white blood cells, several drug regimes were started, including Interferon.

"It was a life support, it was keeping me going really in a funny sort of way. I didn't mind, as long as I didn't have to do it myself too often. I preferred someone else to inject it. Eventually I got a response, which meant I was one of only three or four that do, and that was a positive thing. Every little sign in those days, that was good, was a big plus."

It took a month for Saskia's blood counts to stabilise, enabling a safe return to the U.K. to be closer to her parents, and one of the world's leading hospitals, in the fight against cancer. The Royal Marsden in Sutton, south London.

Dr Ray Powles, always casually dressed, often in black, had an infectious smile and a bubbly extroverted personality. He also performed the first bone marrow transplant in Europe, in the 1970's. He openly admits that he failed to effectively save many patients, until the mid-eighties. This change was bought about by a fundamental change in approach, as well as improvements in available drugs . Rather than seeing a BMT as a last resort, when patients bodies had become overcome with the disease, BMT candidates were selected early, while still relatively healthy and better able to withstand the trials of such treatment more effectively.

Saskia had youth on her side at 30 years, but with no sibling donor available, a suitable match had to be found. The Anthony Nolan Bone Marrow Trust took on the huge task of screening and finding a potential donor. Within a month, despite the odds, Dr Powles infor med us her genes were 'common as muck' , and by the third and final screening stage, they had two 'perfect matches' from which to choose.

During the preceding year, before the transplant, no one noticed the little chilly bin bag, our constant companion, with the refrigerated drugs, or the small pockmarks and bruised legs from the ritual nightly injections. Her hair got thinner, the plug holes in the bathroom got blocked with her hair. No one ever talked of losing the coming battle. It was more, why me? Why now? Why can't we be normal again.

The fortnightly check-ups at the out patients clinic became routine, and the use of needles, second nature. Then the date was set. More tests. Another biopsy. A line was embedded in her chest under general anaesthetic. Effectively a tap, into the main artery, to allow the to and fro of fluids, saving the already tired veins, tucked away in her bra for the next six months. A timetable of events was produced and a dummy run in the radiation lab.

"It's a big room and you lie on a thin mattress. All the lights are turned out and red laser beams line you up, and my meditation music played on a small tape deck. For about ten minutes I kept quite still, turning onto one side, then back onto the other side, then back onto my back. You don't feel a thing, side effects come later."

A metal box containing cobalt 60, a radioactive isotope, moved mechanically from its lead lined room next door, and was lowered over her body. Two fifteen minute spells a day, for three days. 'More radiation, than was once deemed sufficient to kill a tank driver, in the second world war' , as Dr Powles once explained it. Coupled with chemotherapy, the intention was to destroy every living blood cell in her body and marrow. It was spectacularly successful, and totally unselective. All her hair fell out, even the eye brows and lashes. She lost the layer of cells that line the mouth and throat making eating and drinking painful. She had no immunity and was confined in an isolation room, her two nominated visitors required to 'scrub up' at the door, and don a white boiler suit, plastic disposable apron, hair net and your own personal slippers. Infection, the biggest risk.

On the last day of radiation treatment, at around 8 o'clock in the evening, a nurse bought in the marrow. A plastic bladder containing a pinky-yellow fluid was attached to the array of transfusions already on the stand, and connected to the line in her chest. It took twenty minutes.

"A strangely exhilarating experience, and by far the easiest."

The introduced marrow cells 'home in' on Saskia's marrow, take up residence, and start making fresh blood cells. How long does this take? Anyone's guess. Sometimes it doesn't take at all, or if her cells hadn't been totally destroyed, a battle can develop between the introduced cells and her own. Graft versus host disease (GVHD).

And all this time, she had no immunity, safe only in the isolation room, tended by medical staff and life saving transfusions of blood products.

"It was just something that I had to get through. That old tunnel again, I was halfway through the tunnel by that stage, and I could see the light."

"The isolation room itself was pretty horrible. I remember thinking how can I brighten it up. I wasn't allowed real flowers, but everyone brought me lovely things. I was allowed to bring my music and even though I wasn't allowed my candle incense burner, they had an electric one for aromatherapy. I filled the room with the smell of tea tree oil, jasmine and ylang-ylang."

These were the longest days. Waiting for the morning blood test results to show an increase in cell numbers. All the time with Saskia, it was never if, always when. It took 22 days and sleepless nights. The effect was profound and rapid. The long healing process had finally begun.

"I was ecstatic, I don't think I'd realised how tense I was till the day my counts came up again. That was just fantastic."

It was never easy. Cyclosporin, an immune suppression drug, to make the progression slow and controlled, smelt and tasted foul. A bowl or sick bag another constant friend. In the six months post transplant, Saskia never showed positive signs of GVHD. But a dry cough was diagnosed as tuberculosis, and a painful rash was shingles. Her strength and will was constantly tested. At last free from the confines of the hospital environment and able to sit again at the family dinner table, and sleep in her own bed again, a source of relief.

"I found it really hard. The negative aspects. But I got through it. You realise how serious things are, and how close everyone goes when they go through it, especially with a matched unrelated donor. You are on a knife edge, but I didn't think that at the time, cause you just think, I'm gonna get through this, and you do, and I did."

"Love, support and positive thinking. I really do believe its everything."

Daily turned to weekly, turned to monthly visits. Plans and dreams continued to be made. Small problems like who was cooking dinner, where to park the car or which video to watch began to herald a return to some resemblance of normality.

That was almost three years ago now. Back in New Zealand (my home country), we do battle now with a depressed economy instead. Struggling with more pressing issues like paying the bills, we have memories of a Christmas break just gone, one of the most special of all. Seeing the look of sheer exhilaration on Saskia's face as she flew through the air, clutching a biscuit behind a ski boat, more concerned with drowning than disease.

"The futures bright and rosy, I've got my health back. I don't believe it will ever come back. Even if it does come back, hopefully I'll just need more marrow, not the whole shebang. I even talk to my donor these days, he sent me an e-mail with pictures of him scuba diving. My friend Martin, he's only seven months younger than me and he lived just down the road. It's a small world."