‘Dr John told me I had low-grade DCIS—ductal carcinoma in situ—and that I would need a lumpectomy with perhaps some radiotherapy. Fortunately, no mention was made of chemotherapy. At the time I was relieved but now, with hindsight, I wonder if my life would have been different if I had had the chemotherapy.’
Trying to arrange accommodation in Caloundra for a family holiday during September 2007 was proving impossible. When I asked the booking agent why everything was booked out, she said, ‘There’s some world championships in paddling. It seems to be a big thing, with people coming from every corner of the world.’ A big thing indeed—this was the Abreast in Australia 2007 Dragon Boat Regatta. Here, nearly 2000 women who had gone through breast cancer would be paddling in an international carnival celebrating life in the pink.
Now here I am talking with Janelle Gamble, the dynamo behind the event, and a co-founder of Dragons Abreast. Her eyes shine when she talks about how the Abreast in Australia 2007 Dragon Boat Regatta grew from humble beginnings only nine years ago.
In 1998 the first ever conference for women who’d had breast cancer was held in Melbourne, and the Breast Cancer Network was born, with Janelle as Queensland’s founding delegate. ‘At the conference we heard from a Canadian woman about a dragon boat experiment conducted by a doctor to help rehabilitation after breast cancer. Other delegates Michelle Hatton (NT) and Anna Wellings Booth (ACT) were similarly inspired, and we each formed dragon boat teams of breast cancer survivors,’ says Janelle.
Janeile and fellow team members dragon boat racing
‘Then in 2000 Michelle gathered a representative team together and, resplendent in hot pink shirts, we entered the National Dragon Boat Titles in Sydney, calling ourselves the Dragons Abreast team. Problem was we had no paddles, no experience—nothing! We trained by sitting on the bank at Penrith pretending we were in a boat paddling—trying to get some timing going.
‘In that regatta there were three boats in our race, and we came a very distant third. But the whole grandstand applauded and we felt fantastic. And that was the start of it for me. I’ve been committed to the wonderful life of Dragons Abreast ever since.
‘Because we are totally inclusive, anyone—even those with no experience—can come along and paddle with us. But if you want to be competitive, there are international regattas. I’ve been around the world and paddled with amazing women.’
Had she not had breast cancer, Janelle would never have paddled in a dragon boat: ‘I hate the water, I am terrified of it, and yet I just love the sport. It is me time. I can be what I want to be; there are no expectations other than what I want there to be for myself.’
In explaining the benefits of Dragons Abreast, Janelle is enthusiastic almost to the point of becoming evangelical. ‘It fills an important gap for us. Once women finish treatment, they are considered well by the medical profession, who spit us out. We are then on our own and very alone. That’s where Dragons Abreast comes in. It picks up those people, gives them a reason to be alive and—because, with cancer, the body had let them down—they can now become physically active, with no expectations or demands. I also think that doing something physical takes away mental pain.’
Like most women diagnosed with breast cancer, Janelle knew almost nothing about the disease that would change her life except that ‘Only old ladies got it.’ Being fit, with no family history of the disease, and only 40 years old, breast cancer was not on her radar. So she wasn’t prepared at all for her first diagnosis. But to have the cancer return twice more has really tested her fire and resilience.
Back in 1991 Janelle noticed a small indentation like a thumbprint on her left breast and went to her GP, who didn’t suspect anything was wrong but did suggest a mammogram. ‘I went off to the Wesley Hospital and found I was a “lucky one” who’d hit the jackpot!
‘I was told things didn’t look good and that the doctor would be in touch. They offered to drive me home, but being Miss Independent, I told them I was fine. They did think it was strange that I wasn’t upset at all—but I got as far as the car park and totally dissolved. I can’t remember driving home.’
Janelle had gone for the test by herself. ‘I didn’t need any help. I am a very strong woman. I thought I could handle anything.’ She also can’t recall how she was officially told of the diagnosis. ‘All I know is that I went to see Professor John McCaffrey, who was working with the Cancer Council.
‘Dr John told me I had low-grade DCIS—ductal carcinoma in situ—and that I would need a lumpectomy with perhaps some radiotherapy. Fortunately, no mention was made of chemotherapy. At the time I was relieved but now with hindsight I wonder if my life would have been different if I had had the chemotherapy.’
At that stage, Janelle’s two sons were aged six and eight, and her daughter was a teenager. Husband Blair suspected something was wrong, but his fears were confirmed when ‘I just blurted out, “I’ve got breast cancer and I’m going to die!” “Poor me”, “Why me?”—all those despairs that splash through your head.
‘I just could not believe that someone as healthy as I was could have an old ladies’ disease like breast cancer. It was such a shock. Although 40 is very young, I realised that I was actually very lucky. I’d had my three children. It was just such a shock to me and to everyone. I couldn’t believe it and I kept looking at myself and thinking, “I’m so well!”
‘My friends were great. They are really quirky! They’re not the sort to sympathise and say, “Poor Possum”. They told me to get over it! One of my friends brought in a bonsai tree—it was lopsided like I was going to be,’ Janelle chuckles.
Janelle is a very practical person and, having accepted her situation, she decided that she just had to get on with it. ‘I talked with Professor McCaffrey—such a calm, caring man—and he patiently answered all my questions, almost as if I was the only women ever diagnosed. But there was an urgency to get that lump out of me.’
A lumpectomy was scheduled for that week. However, the biopsy taken after the surgery revealed that there hadn’t been completely healthy tissue surrounding the site of the surgery so Janelle was back in theatre within the week, and finally the margins around the tumour site were clear.
She was offered radiotherapy treatment and was told there was no need to have chemotherapy. ‘That was the best available treatment at the time. With hindsight, had I had chemo then, the cancer may not have recurred—I really don’t know. At the time, I wasn’t nervous about not doing chemo; I was absolutely thrilled to not have to go through it.’
When she was in hospital Janelle was offered a support visitor, but of course, once again displaying her independent nature, she told them she was fine: ‘The cancer’s gone and I don’t need anyone up here teaching me how to knit—just keep out of my face!’
The radiotherapy was exhausting for Janelle; she was working as a teacher full-time, looking after two active young boys under nine and trudging up to the hospital each day. ‘It was a hard slog. At 40, I was too young to be tired. I was out there doing things, so that did hit me a bit.’
The worst effect of the cancer this first time round was the impact it had on those around her. Whilst most of Janelle’s friends stuck by her, she was devastated and is still greatly saddened by the loss of contact with ‘my bridesmaid. I tried many times to contact her, but it was like I had a contagious disease, and to this day I’ve heard nothing from her—not a single word. That really hurts.
‘The other thing that really bothered me was that my daughter, Tara, was totally lacking in support—like most other 18-year-olds would have been. It’s probably how teenagers cope. She ran away from home and did her own thing. She didn’t know what to do or how to handle it. She finally came back but announced she was leaving for overseas in three weeks. She was away in London for about three years. During that time there were lots of phone calls, conversations and growing up. She came back my very best friend in the world. But at the time that was very hard for me to cope with.’
Life went back to normality and apart from regular check-ups, ‘I went out and had a good time—leaving cancer behind.’ However, she does admit that there is always the fear of cancer in the back of her mind: ‘You are never cured. Every ache could be secondaries in my bones; each time I got a cold or a sniffle I’d think, “Oh, it’s back!”
‘Professor McCaffrey suggested—no, he insisted—that I become a volunteer with the Cancer Council, even though I assured him I was not the volunteer type. But I did the training and worked with women in a similar position to myself; since I had been treated with only radiotherapy and Tamoxifen, I was not equipped to offer peer support to anyone on chemotherapy. Really, this is the most rewarding thing I’ve done in my life. What is most satisfying is being able to take the fear away from others and therefore myself. I found that peer support has enormous benefit to women who have breast cancer—just being able to say, “I’ve been there” and understand. It’s also being able to offer the practical hints—like always wearing separates to radiation therapy, so you aren’t out there lying in just your knickers.’
Then seven years later, almost to the day, Janelle had her routine mammogram at Chermside BreastScreen. Fortunately, John McCaffrey was there at the time and on reading the films told Janelle he didn’t like the look of them. Initially, they thought the problem lay in the use of a new brand of film but a second investigation showed that a new cancer had formed in the scar tissue of the original tumour.
‘I was all tarted up to go to lunch and champagne with the girls at the Sheraton. I thought, “I am tough, I can deal with this,” and walked into the hotel and dissolved,’ she says shaking her head. ‘This just can’t happen a second time—double jeopardy.’
She was annoyed. ‘It was so damned inconvenient. My husband and I had planned an overseas holiday. But Blair, ever practical, explained we could always go on a holiday later; now let’s get well.’
She again headed into surgery for a further lumpectomy. ‘The first scar had healed so well it was invisible. This time they had to take quite a bit more so I ended up looking like my bonsai tree—lopsided!’ She chuckles and adds, ‘Which I killed purposely.’
Because she couldn’t have radiotherapy twice on the same place, Janelle was put on Tamoxifen, the wonder drug of the time. But after 18 months of being ‘the complete bitch from hell’, gaining weight, and going through mood swings, Janelle threw the tablets away, confident she was healed and had finished with cancer for ever and ever.
‘You never, never get cancer three times,’ she had said confidently—at the time.
Incredibly, almost seven years to the day once more, Janelle found herself having the regular mammogram in 2004 and facing a third bout of breast cancer.
‘I was in total disbelief. Worst of all was that Dr John had died and I didn’t know who to turn to professionally—his shoes were too big to fill.’
Again, the diagnosis was very inconvenient. Janelle was packed and ready to travel to Shanghai to compete in the World Dragon Boat Championships. Knowing that this third tumour in the same breast meant a mastectomy, she made the decision to have an interim lumpectomy and then deal with losing her breast when she returned to Australia.
‘Within three weeks I was in the boat, competed in the Championships and came straight home into hospital for a mastectomy and immediate reconstruction. I had a good medical team and really felt like I was okay,’ she says.
This time round Janelle had chemotherapy. ‘I was absolutely dreading it. I did everything possible to avoid it; I just couldn’t bear it. When I had been doing peer support visiting, I’d met several women who had been treated with the various forms of chemotherapy, and was aware of how these drugs affected the patients—nausea, hair loss etc—so I thought I knew how difficult it was going to be. And that made me scared enough, but in fact I had no idea.
‘The first treatment was scary—the unknown—waiting for the needle to deliver its lethal cocktail of drugs. The saline wasn’t too bad, but then comes the chill as the real deal snakes through your vein. And it takes so long, sitting there—hooked up to a hubbly bubbly pipe but not nearly as much fun. Finally, that first session was over. But worse was to come: there were six sessions to endure over the following months.’
After the first session of chemotherapy, Janelle decided she was not going back. ‘It had all run late; there was a meal of tripe waiting for me in the hospital room, with three other sick ladies—so I threw a tizzy fit and went home to die quietly.
‘I didn’t want to talk to anyone; I was so pathetic I just lay in bed for days, waiting to die. I was in complete shock about how hard it truly was. I decided I was never doing this again: “No matter how sick I get, I am not doing this again,” I vowed.
‘It was only my close friend, Leonie, who got me through. I wouldn’t let Blair come with me and see me vulnerable. I tell you, she was amazing. It was only at Leonie’s insistence that I completed my cycles. There is no way I could be that strong and do that for someone.’
But, of course, she eventually found the strength and battled on.
Janelle acknowledges that her emotional reaction was extreme. She was used to being healthy; feeling nauseous and constantly vomiting was alien and really threw her. ‘The first three days after the treatment were always difficult—waves of nausea and feeling like a limp rag doll. As the days passed, so did the nausea, until after three weeks, my strength would return, and I had to mentally prepare for the next session of treatment.’
So negative was her experience of chemotherapy, especially with the red chemo drug Epirubican, that even to this day Janelle gets the trembles every time she sees red cordial or anything bright red. ‘Chemo was the worst part of my cancer journey, but I learned how strong women can be and I have found new respect for those who have done this before me.’
So after three bouts of breast cancer, how did she cope? ‘I reckon I have coped very well. I don’t dwell on it and I focus on things that are important to me, like my family. Now I am about to be a grandmother for the first time—that’s important,’ she says with a huge grin.
Breast cancer doesn’t intrude into Janelle’s life at all on a daily basis. But she does admit that it is never going to be far from the back of her mind, especially when women she knows lose the battle. ‘We have several ladies in our dragon boat who have secondaries and they are so determined to live every day to the fullest that they are out there, even if they feel lousy, because paddling takes the focus away from their fears. That sort of courage keeps me going to Dragons Abreast.’
When I ask her if there was one secret for getting on with life after cancer, Janelle replies, ‘Without wishing to sound selfish, take each day as it comes, have some long-term flexible goals that are within reach and then go for it!’
Whilst Janelle managed her emotions quite well during her cancer journey, she says her children, especially the boys, have had to deal afresh with each new diagnosis. She says, ‘They probably know as much as anyone about the disease because they’ve lived with it—it’s all they know. In a positive sense it has given them a compassionate outlook on life.’
She recalls a poignant moment on the day her hair started to fall out after chemotherapy during her last bout of cancer. ‘Callum, my youngest, is a motorbike fanatic: bikes are his life, and he is really the tough blokey type. This particular day he noticed after my shower that my hair was shedding everywhere. We sat together and cried. Then he got up and carefully shaved my head. Breast Cancer has really developed a strong bond between us.’
After a cancer diagnosis, death and depression may hover in the subconscious, but Janelle is a shining example of the power of positive energy in overcoming despair.
‘You don’t have to have cancer to face death. That bus will come along whether you are ready or not—I’m just hoping that my bus is a long way away! And I intend to live my life with no regrets.’
She tells me that she is no longer the person she was before cancer. Although Janelle could never have been described as meek, she has now developed a strength and focus that is born from adversity. ‘I know who I am, where I am going and how I am getting there,’ she asserts.
Throwing her arms wide she becomes very animated, saying, ‘I am really very lucky. My life is full. I travel a lot. I have fabulous friends, a great stable family life, my husband is supportive of my personal freedoms and I don’t dwell on negative things or people—they have no place in my life.’
And in a flurry of hugs, laughter and energy, the Queen of Dragons Abreast is off to train for Abreast in Australia 2007 in Caloundra!