Memoir: It's NOT all Wine & Roses

CHAPTER THIRTEEN. THE PATTERNS OF DAILY LIFE

My life has long been one of routine. It has had to be. At one stage, when my four children were young teenagers, I was running a public relations business, writing my weekly newspaper column, completing a Doctorate in history at the University of New South Wales, managing a large house in the city and creating a 5-acre cold-climate garden at a second house in the Southern Highlands: all at the same time. I was brought up during the feminist wave that promoted the idea that women could have it all; all at the same time. For the six years of my PhD candidature I rose at 3am each day, made a pot of tea, then got to work. I’d stop for breakfast with the family; Ross would take the children to school and I’d start work for my PR clients. I’d work until late afternoon, when I would stop to watch a soap opera, and the news, on the television in the kitchen, while preparing dinner. Then I would start work again after dinner.

When I look back on it I wonder how I did it all. My children like to tell anyone who might listen that it was because they ‘had to’ make their own school lunches. Not true, except perhaps for a few months when I had the ambitious hope that they may learn early to be independent. And they all took turns in setting the table, making the salad and pouring the glasses of milk. (In fact, they are all, as young adults, very capable, and all excellent cooks.) These days at family events they like to regale each other with some of my mothering foibles. Like my invention of ‘Jobs Lotto.’ This was a terrific invention; a fortnightly event, at Sunday night dinner, during the two decades that all the children lived at home. I would write all the jobs to be done in the house on slips of paper: empty the dishwasher, sort the clean washing, walk the dog etc. The slips would all be put in a plastic container which was passed around the dinner table, so that each child could choose two jobs which would be their responsibility for the next two weeks. What could be more fair?

The truth is that I could cram a lot into a day because I worked from home. In the early years of my business, when my twins were babies, I had a smart office in a smart suburb, not far from the centre of the business district. I came home early one day, however, to find the two au pairs (they called themselves nannies, but that was rather too grand a term) with my babies in carry baskets, bottles propped up on pillows and the two girls, their backs to the children, painting their nails and chatting happily. That was the moment I realised I would lose another child if I did not move my business home; if I was not there to watch over them. So the car was tipped out of the garage and an office was installed. (I have often wondered – and written many letters to newspapers for many years – when politicians from either side state they are determined to attract more women to parliament, how they imagine that would be possible when childcare for working women is not even tax-deductible.)

By June 2012, however, chemotherapy had forced my days into another pattern. Nausea would wake me at 3.30am or 4am, and I’d quickly take a drug to combat the nausea. Stemitel seemed to be the best drug for the nausea, which was preventing me from eating. I’d get up, to make up a cup of hot chocolate with Sustagen, which, for several months, was all I could tolerate. I’d turn on the television, to watch my pre-recorded programs from the previous night. Then I’d watch some early morning news from America, until the ABC breakfast show came on. Sometimes during the day I would manage a couple of mandarins, but my taste (or lack of it) seemed to change each day: there were very few solid foods I could tolerate. For weeks I lived on Weis bars, sorbet and jelly; some days it was just dry ginger beer.

Only our youngest child was still living at home in 2012, and Ross was cooking his own meals, and eating them in another room, as far from me as possible, so that I would not smell the food. I could not even bear to watch advertisements for food on television. The medical team told me I should not be experiencing any nausea: that with the modern drugs the chemo experience should be nausea free. On the contrary, I don’t know anyone who has gone through chemotherapy without nausea. Answering the emails of support kept me sane. But then, by the afternoon I would have fallen into a deep sleep.

By late June I was getting very tired of feeling so dreadful. The nausea was like morning sickness, except that it lasted all day. Sleep was a blessed relief. And on a few of the early mornings I fainted, waking to find myself on the kitchen floor, often before dawn. I supposed it was the chemotherapy – that cocktail of highly toxic drugs – that was playing havoc with my blood pressure and my entire system. It was all so ugly. There were surely brighter days ahead: but it was hard to stay strong, and to push ahead.

On June 27th I had a final check up with Ralph Mobbs, the neurosurgeon. He studied my latest scans and pronounced my brain perfect: said I had the brain health of a 25-year old! That the scan was completely clear, and that anyone looking at it would not know I’d had surgery. My sisters and I are all conscious of dementia: I told him our mother started suffering from dementia, which was eventually diagnosed as ‘Steele- Richardson Syndrome’, at just 60 years of age. Thank goodness there was no sign of that, but a plump, healthy brain. I joked with Dr Mobbs that my bone density scans all revealed the bones of a healthy 20 year old. It was just a pity about the bits in between!

But by July 24th, and after just two rounds of the full-throttle I. V. chemotherapy, we had Great News: the CT scan that day showed a major – about 70% - shrinkage in the lung tumour. We were ‘over the moon.’ Melvin Chin, the oncologist, also said there was shrinkage in the adrenal gland tumour. He had been expecting that there would be no change at that early stage, so he was thrilled. And I had been dreading the worst, so I was elated. This was a new lease on life: another chance. We were beyond excited.

And Dr Chin was now talking of six rounds of the aggressive chemo cocktail of Cisplatin and Alimta, as he was so pleased with its success so far.

I went off to hospital for the third round of treatment on July 26th 2012. Ross and I arrived at 10am, and the nurses set up the first saline drip using the canula that had been inserted the day before, when I had had blood taken. Then the gimlet-eyed Kim came in, viewed the canula and said they could not use that for the chemo as it was not inserted well enough. There were groans from me, but she inserted another canula without any drama. That’s the difference between an experienced nurse and a young trainee. I noticed none of the nurses wanted to be my tormentor. I could hear them outside my hospital room arguing over who would insert my canula: my veins were rebelling, and in any case I had always hated needles. On the advice of the nurses I decided to have a PowerPort installed before the next round of chemo. This required day surgery.

As I have said, I stayed in hospital with each round of chemo for two nights. I felt safer in hospital and I managed to eat something in there, much to the amusement of the medical team, as hospital food is hardly gourmet. The only problem was that, even though privately insured, I was not always assured of a single room, and some of my room-mates groaned in pain, or snored, all night. Others were loud and had loud visitors who swore in the most depressing way. However, I was safe and was receiving great treatment and great nursing. And the London Olympics had started so the television kept me company during the long hours awake through the night.

The hospital nutritionist came to see me, admonishing me to eat so that I would be strong enough for the two extra rounds of chemo that Dr Chin wanted. My weight had dropped to 44 kilos, down from my best weight of 54 kilos. While I finally had the coveted ‘triangles’ of light between my thighs, I looked pretty fragile and rather pathetic. I had long been of the opinion that a woman can never be too thin – perhaps there is a little of the anorexic in every woman - but even I had to admit I had the look that screamed ‘cancer’.

By August 2012, a week after my fourth round, I was feeling much better. The nausea seemed to last for about eight days and then I would feel like a different person. Happy, almost. I had taken up bridge again, my third attempt to learn this game that so many loved. While most of the conventions didn’t make sense to me – why, for instance, should I bid ‘two clubs’ if I didn’t want to play in that suit - I agreed that the companionship of the other players would be comforting, and something to which I could look forward. But some days I skipped the lesson, too tired to leave the sofa and get out of my pyjamas. I hated feeling so lazy: it was like being trapped in a black tunnel of lethargy and tiredness, with no energy to drag myself free.

On August 17th I had a PowerPort inserted into my chest, above my right breast. The PowerPort is a small device that is inserted under the skin, usually in the chest, that allows blood to be taken. It also allows contrasts to be injected for various scans, instead of via a canula. (The device can be left in for months, even years, and simply requires regular flushing to ensure that it remains clean. Kerry, who is an ‘Outreach Nurse’, visits me at home every three weeks to carry this out, and to take regular blood tests, again through the PowerPort.)

On the day of the procedure we had arrived at the CT scan area in the public section of the hospital at 8.30am, as instructed. Martin, the head teaching nurse, took my blood pressure, and said that, as it was so low, the surgeon, Dr Lim, may not be able to do the procedure. I started crying as, for each of the procedures and treatments, one prepares oneself emotionally, spending many hours awake, anxious; unable to sleep.

The surgeon perhaps took pity on me, for he started the procedure in one of the operating theatres. Whoever said it wouldn’t hurt has not been through the experience. I had begged for Midazolam, a popular sedative in the benzodiazepine range (the valium family) to calm me down. The 3ml dose was not high enough to knock me out, however – a higher dose would have required the presence of an anaesthetist - nor to prevent the local anaesthetic from being extremely painful. Martin had also given me 40 mls of Fentalun which just made me a little light-headed. There must have been some effect, however, as, throughout the procedure, Martin and I talked about his wife’s 48 hour labour; not a topic for regular discussion with someone you have just met.

My fourth round of chemo started that afternoon: what a joy not to suffer the insertion of another canula into a recalcitrant vein.

I went home on the Saturday morning accompanied by a new anti-nausea drug – Olanzapane – which I took at night, and which seemed to be allowing me to sleep for longer periods of time. It reduced the nausea, but I was still unable to eat.

The medical team had planned my chemo treatments to fit in with an idea my three sisters and I had: to have a reunion, each year, for a week. So, in early September 2012 we had a marvellous week up in the Queensland beachside town of Noosa, staying in a beautiful unit with sweeping views of the coast, and the aquamarine sea, all framed by palm trees, leaning laconically. There were walks on the beach and through the adjoining rainforest, many great chats over cups of coffee (with ginger beer for me) in sidewalk cafes. We also ‘unpacked’ some issues, but in a gentle, peaceful way. Nothing seemed important any more. I had found that peace earlier in my illness also, catching up with friends I had not seen for a decade or more. What was important was being alive and spending time with family and friends. Life had become too precious, too precarious, and possibly too short, to bear grudges - big or small.

And there were a lot of other things that no longer mattered: such as how someone held their knife and fork; whether they cut their bread roll, or broke it. That they put a ‘k’ on the end of ‘something’.

The next CT scan at Prince of Wales hospital on September 4th was almost enjoyable, thanks to my new PowerPort. But the great news was that the scan showed the lung tumour had disappeared. The liver tumour had been reduced to a spot and the tumour on the adrenal gland was reduced by fifty percent. The chemo may be poison, but those cancer cells were more averse to it than I. Believe it or not I developed a love-hate relationship with chemotherapy. On the one hand it was disgusting: on the other, it worked. It saved my life. And I had a private, single room for my fifth round of chemo, from September 6th. What a treat. I was feeling terrific.

As the weather warmed into spring, the Olanzapane anti-nausea drug was doing its job, although my appetite for solid foods had not returned. I had received an advance copy of my new book, my 11th: Country Gardens: Country Hospitality. I needed to get on with writing the lecture I would give on my book tour, and with preparing my presentations. I even thought of doing some gentle gardening. And soon the day for my sixth, and last, round of major chemo arrived. It was September 26th. I had come into the hospital the evening before to have blood taken, so that my tumour markers could be checked: again, the PowerPort was accessed. And we had the meeting with the medical oncologist, Melvin Chin, and the medical team which included Gabriel, a charming, courteous and attentive young registrar.

I felt that I had not suffered too much through the treatments, although people regularly told me how brave I was: Ross and I both felt we had been very lucky to have had such fantastic medical attention. The worst of it had been the shock of the diagnosis. One learns very quickly to grab every moment: enjoy and make the most of every day. To live in the moment, as the cliché goes.

On Friday September 28th, after my 6th and final round of the intensive chemo, we had another meeting with the lung surgeon, Professor Brian McCaughan. If the tumours had not disappeared completely he could not operate on my lung: he would not put me through a major operation if cancer was still present in my body. If it was, the next step would be to go onto a regime of light chemo, of just the drug Alimta. The Professor ordered a PET scan, to be conducted just along the road, at Royal Prince Alfred hospital. We walked the hundred yards to have the scan immediately: no point in not taking the first appointment possible, and hearing the news, good or bad. No point in putting my head in the sand.

A few hours later Professor McCaughan rang to say that all the tumours had disappeared. “We could not have asked for a better result,” were his words. Elation is too tame a word for how we felt. I rang Dr Chin, first, and then Leigh Atkinson, in Brisbane, to tell them both the good news, although, as part of my team, the Professor’s office would send them both a report.

The Professor wanted me to have time to put on some weight – said he could not operate on me in my present weakened state - so he was happy for me to go off on my book tour, which was to be almost a month, travelling through New South Wales and Victoria, with Ross doing the driving. I was giving illustrated lectures to garden clubs, libraries and in bookshops: tiring, but very enjoyable. The publicity tours and the speaking engagements are the treat, after the long, lonely hours of writing, of the hours of self-doubt and, at times, even boredom. We travelled south, again along the Hume Highway, to Wagga Wagga, in the Riverina, for the first presentation at the beautiful city library. Then it was on to Benalla, to take part in a weekend of garden openings, and events. We drove on, to west of Mount Macedon to Daylesford, where I photographed Stonefields, the virtuoso garden of the landscaper, Paul Bangay, as well as Musk Farm, the beautiful house and garden of the late Stuart Rattle.

Stopping at several more country towns for radio interviews and book signings we drove on to the lovely seaside town of Port Fairy, before making the long journey along the Great Ocean Road, past the stone apostles, to Queenscliff. The next morning we left early and drove the 12 hours back to Sydney: a tiring but fulfilling trip.

On our return to Sydney we had another meeting with Professor McCaughan: he scheduled surgery for November 27th to remove part – or perhaps all - of my left lung. In the meantime I had my first encounter with the light chemo, the Alimta, and even managed to eat some crackers with cheese and tomato.

But I came to an acceptance that this Thing – cancer – might beat me in the end. That I may not see a century. With the realisation came a new calmness. The question is when. Strange and bizarre how one comes to terms with such a situation, how one accepts what might be inevitable with a new resolve.

*****

 


Noosa