In mid-December 2000 I knew that there was something wrong with one of my boobs. There was no pain, no ache, not even discomfort. There was merely a sense of being aware of my left nipple – the very slightest tingling, perhaps, but enough to awake that awareness. The feeling had been there for several days.
A breast palpation assured me that there were no lumps; but then I noticed something odd. My right nipple was clear, but the left was crusty. I cleared the crust away and decided to wait for 24 hours – when a quick check showed that the crustiness had returned.
So off to the doctor, who decided that this was merely a case of mild mastitis and gave me a seven day course of antibiotics. Seven days later the crust was still forming and a return visit to the doctor had me back on the antibiotics for a further seven days. The crust stayed there. So back I go to the doctor.
Now antibiotics play hell with my system – in fact just about any medication other than a Panadol tablet knocks me sideways: I’d have made a lousy drug addict! I went into panic mode when the doctor suggested a third course of antibiotics: three days on the things and thrush is inevitable. So I stood my ground and demanded a mammogram plus an ultra-sound. But it turned out that the mammogram machine was out of order – it would have to be the ultra-sound, which was arranged for two days later.
I decided to phone around, and ask around, and what I heard was extremely disquieting. Again and again I was told stories that forced me to a deeply troubling conclusion. Fiji’s mammograms were (if the machine was working) bad. They were not read correctly. X-rays were usually a joke and also badly interpreted. Again and again I was advised to ‘get on the next ‘plane and go overseas’.
Panic set in. My husband was in Kuwait training for employment with its major airline and I was determined not to trouble him with something that might prove to be a storm in a teacup. I was alone; in the middle of packing up our home in order to join him; arranging storage of household goods; finding someone to live in the house with our son; and having to put down a much-loved dog who could not be found a home because she had a weak bladder and had to be kept off carpets and rugs; and on top of all this the ordinary daily chores had to run smoothly. Add Christmas and New Year to that and, all in all, this was a time of great personal stress.
My appointment was for one o’clock, but I left early, did some shopping and then, on a whim, walked into an airline booking office to enquire about flights to New Zealand. Don’t things sometime seem to be pre-ordained? Sitting waiting at one of the counters was a man I had met only once, quite recently, at a Christmas party. He was in Fiji from New Zealand, to teach at the medical school.
His ticketing agent had left her booth: I was across the room like a shot. I excused myself, told my story as succinctly as possible, and asked his advice. To my horror he confirmed everything I had been told and advised me to get on the first available flight to New Zealand and advised me to not bother with my appointment. I decided to fly to New Zealand as soon as possible.
Now before you decide that I am as rich as Croesus, that purchase led to untold, ongoing problems that would last all of six months. Yes, I had medical insurance, but in my naiveté I thought that the medical people in New Zealand would arrange all that – I had no idea that I required a referral from Fiji, so this became a nightmarish side issue. It was all sorted out in the end; but I was kindly but firmly admonished not to jump the gun in future!
After several phone calls it had been arranged that I would stay with my husband’s niece and her family in Auckland. She organised an appointment for me, at a women’s clinic on the 6th of January 2001. There is a small memory lapse here, because I might have visited the centre on the 5th by way of introduction – I am not sure, and it is unimportant. What mattered were the tests I had to undergo.
That morning and on into the early afternoon in January 2001 runs in my head as a fast forward black and white movie. Probably black and white because I seemed to spend most of it lying on treatment beds in darkened rooms while various members of the medical profession squeezed, scanned, prodded, and poked. I clearly recall being prone on one couch while a woman in a white coat thumped about on my chest with the medical equivalent of a jack-hammer. Finally my left boob was stuck with a long thin bendy wire, and I was driven by ambulance to a nearby hospital, where I was knocked out for an invasive ‘exploratory’ operation. It was a long day.
The next day the specialist assigned to my case told me that there was ‘cancer in situ’ and explained exactly what that meant. Yes, it was cancer, but those nasty little cells had not yet begun to grow and move; they were just sitting there, biding their time – waiting to strike, I suppose. But I had options. The non-invasive treatment would be radiation therapy – could I stay in NZ for that? No – I most definitely couldn’t, although that therapy was not available in Fiji at that time. Well, in that case I could have a mastectomy – that would be ‘the golden option’ as he put it.
He offered me counselling but I am of a generation that grew up learning to stand on its own two feet and make its own decisions. Sensing that counselling would confuse rather than clarify, I declined. So he told me to return to reception, have a cup of tea, and think it over for half an hour.
By now of course, my husband knew that I was in NZ for tests, but nothing more than that and I wanted to keep it that way: which meant that I couldn’t ask him about Kuwait’s medical facilities. I couldn’t impose on his relatives for months of radiation therapy. I had a son at home to consider. I wanted to be with my husband as soon as possible. I chose the ‘golden option’ with reconstruction. The op was scheduled for January 10th – the wedding anniversary of my first marriage but we won’t go there!
I returned to the women’s centre on the 9th to meet and be examined by the chap who was going to chop me up. We met in the tiniest of rooms – probably a converted broom cupboard, and sat in chairs placed at right-angles so our knees couldn’t touch. He was a pleasant enough man, describing what exactly would be done; and I was delighted to learn that the reconstruction fat would be taken from my stomach – at that time I did have a little more than necessary, and moving it upwards seemed to be the best place for it to go. Bye-bye tummy, hello new boob!
After a while the surgeon fell silent for what seemed like an age. I tried to think of an intelligent question or remark but by that time I was utterly exhausted and just wanting it over and done with. Then, with a sudden start, he turned to me, stared into my eyes and said, ‘You do realise, don’t you, that you could die on the operating table?’ Yeah – well, thanks a bunch, doc!
It was all I could do not to laugh. I’ve had so many operations since I was eleven years old that that is the last of my worries. In fact, I’ve often thought it would be a lovely way to go, apart from the fact that the anaesthetist spoils it a bit by making you count backwards from 10. It’s a fabulous feeling even if it does only last for a split second – but you never forget it. There’s a light buzzing sound – you float – there’s a bright white light – and then someone is patting your hand and saying, ‘come on then, time to wake up’. That’s all there is to it.
They were marvellous, all of them in that small hospital. January is not a good time to seek medical assistance in NZ because that is the month when the medical people go on holiday, leaving hospitals, medical centres and clinics short staffed, but everyone was so kind and helpful. So much so that when, on the third day, a nurse popped her head around the door and asked ‘are you OK’, I burst into tears. It was some time before I was able to explain that I was fine, but overwhelmed by all the kindness and care I was receiving.
I was allowed home on the 4th or 5th day, if I recall correctly. I was to remain in bed and be attended to by a nurse who would visit once a day to change the dressing. This was where we hit a hiccup, the nurses and I. Because the nurses were rostered to move about, so every day saw a different nurse with different methods turn up. Whether that was the cause of the wound becoming infected I do not know – but I do think it was a contributing factor. But never mind – it did heal eventually, but by then I was in the UK waiting for my Kuwait visa!
I was assigned an oncologist and together, he and the specialist explained that I had definitely made the right choice. The cancer was actually found to be sitting right on top of my rib-cage – and cancer loves bone. I’d indeed chosen the ‘golden option’; I was relieved to hear it.
Eventually up and about, I visited a lingerie outlet owned by a trained corsetiere to be fitted for a special bra. Having got the first one on, she saw me yank at my right boob to get it sitting right, and recoiled in horror. No! Never! Never ever, treat a breast like that – it has very sensitive tissue! Oh – I mumbled, probably gawping like a gold-fish – but what about mammograms? Hm, she snorted, well, that’s the individual’s choice, isn’t it. Food for thought.
Then came the final consultation with the oncologist, a mere formality, really. And then to say goodbye to my specialist – a tall, slim and kindly Sri Lankan who chatted inconsequentially for a while, then stood, saying he had other patients to see. So I stood, too. And then he said, ‘You’ve been very brave and I think you deserve a hug, don’t you’ and bent down and gave me a lovely big hug and I burst into tears again. Sometimes, kindness can hurt, cruelly.
Remember the ‘partial’ reconstruction I had opted for? Well, you get left with a boob shape packed with tummy fat and sealed with a neatly stitched circle of skin, like the end of a bolster. For the full job, this little circle is pulled and twisted into a nipple and the resulting aureole and nipple are then tattooed, yes, tattooed with a pigment to match the other one. Truly! I find the concept hilarious because, surely, there’s nothing much more useless than a dead nipple.
Fast forward to the UK; the lovely Devonshire springtime hedgerows, the smell of freshly mown grass, the cawing rooks, the lovely home of dear and long-time friends, a view of the landscaped gardens from my bedroom window; and best of all, jumping out of bed at dawn to watch the bunnies playing and nibbling grass on the lawn. Long country walks and excursions to National Trust properties; and just lolling in a deck-chair soaking up the sun.
My friends had been advised by a breast cancer survivor to urge me to purchase a nipple kit. By this time, waiting 3 months for that Kuwait visa, I had found that my left boob filled a well-shaped bra quite well – certainly well enough that my chest looked quite normal. But when friends are trying to help, and the kit wasn’t expensive at all, it seemed boorish not to send off for it, so I did. It came, as promised, in a ‘plain wrapper’ without any advertising, which was a relief. Imagine opening the front door to the postman and he hands you a packet stamped False Nipple Kit. Duh.
Inside the box I found a small glass bottle of nipple glue…(now look here, I am not making this up! The product is AMOENA – so Google it for yourself!) Anyway – there was also a round plastic box an inch deep and two and a half inches in diameter. Inside it sat two rubber aureoles one and a half inches in diameter, with decidedly un-aroused nipples complete with goose-bumps, all in a lurid shade of pinkish-beige. And yes, I did try one – several times in fact, but the whole procedure struck me then, as it does now, as ridiculous and frightfully funny. I have the kit to this day – why, I haven’t the faintest idea! But I just took a look at it to make sure I got the description right.
There is a moral in this story, which is this. Nobody on this earth knows your body better than you do. Not your doctor, nor any specialist. And no matter how well you eat, exercise, and keep yourself fit, cancer can happen to you. Bad things do not just happen to other people. If you sense something is wrong, do something about it. Don’t take no for an answer, because none of those who treated me could make any connection whatsoever to a crusty nipple and cancer in situ. So follow through on your hunch, because if you think something is wrong it most probably is. Be aware – and listen to your body because you are the best friend it will ever have.