Chemo Or Not Chemo? [book extract]
Sunday, 17 June 2012
The first step on the road into the unknown is a meeting with the woman who is to be my pilot from here on in, oncologist Dr Rosie Cox. ‘Please call me Rosie,’ she says shaking my hand and then waving me to a chair. I sit down. Honoria, the breast care nurse, sits down next to me. The breast care nurse is the patient’s advocate, so she always sits on the patient side of the desk. Honoria gives me an indulgent smile. I’ve seen this smile stretched across quite a few faces already, sometimes accompanied by a little sideways tilt of the head. I suppose I will have to get used to it.
Rosie Cox gets straight down to business. She refers to my notes.
‘Your tumour was grade three. The histopathology showed that one of your lymph nodes had metastatic cancer and three others contained micrometastases. So now I am recommending that you have a course of chemotherapy. That should be followed by radiotherapy and then hormonal treatment. The chemotherapy I will be recommending will be Adriamycin and Cyclophosphamide. We call it AC. That will be every two weeks for four cycles. In between we will give you an injection to boost your white blood cells. Then you will have Taxol. We may give you that weekly. There have been some new studies showing that the Taxol is better tolerated if you have it in smaller doses but more frequently.’
Just to be sure I’m keeping up, Rosie sketches out her fiendish plan on a piece of paper:
T 8 weeks — weekly
1 month gap
Radiotherapy:- 50 Gy / 25# — 5 weeks Monday–Friday
She goes on: ‘Your tumour was positive for both oestrogen and progesterone receptors. That indicates a course of hormonal treatment. Because you haven’t yet reached the menopause I will suggest that you take Tamoxifen. Tamoxifen works by blocking your body’s uptake of oestrogen. Aromatase inhibitors, on the other hand, limit your production of oestrogen. We usually give those to women who are past the menopause.
‘Do you have any questions?’
I shake my head. Then, ‘Actually, yes I do.’ I fish in my handbag for a piece of paper that I prepared earlier. I begin to read it out aloud: ‘What are the statistical outcomes for people with the same grade, type and size of tumour as mine: one, with no treatment but radiotherapy; two, with only chemotherapy; three, with chemotherapy and Tamoxifen? What do you think about genomic assays such as Oncotype or Mamaprint? When do we start? When does it end? Can I get vitamin C infusions? Should I have more physiotherapy? Do you think I should have counselling? What happens at Christmas? What about the swine flu?’
Rosie looks down at her notes. I can see that she is fighting the urge to clutch her head in her hands. ‘I think I should see you again next week. Phone my secretary. Ask her for an extra-long appointment.’
You may have guessed that I’ve been busy on the internet, genning up on things like genomic assays (these are really expensive genetic test that claim to predict the likelihood of recurrence of breast cancer) and vitamin C infusions (one of the more prominent alternative cancer treatments, advocated by Linus Pauling). I promised myself that I wouldn’t go there. For several days I resisted the itch to click. Then I just looked up one little thing. And then I followed a link. Before I knew it I had forty or fifty web pages open on my laptop: Breast Cancer Care (useful); Wikipedia (information overload); DoctorYourself.com (DIY oncology); cancer chat rooms full of desperate cases (distressing and depressing); OncologyStat.com (incomprehensible). I read and read until my head began to throb. Every answer begat another two questions.
I’m in a life-threatening situation, though. What would you do? And that, really, is the nub of the problem. Because I fear that my life is at stake, I feel duty bound to follow every breadcrumb trail of information, to investigate every suggestion, no matter how loopy.
So I’ve been getting costly vitamin injections, re-stocking my pantry with mountains of organic brown rice and quinoa, juicing for Britain, and then this:
Jamie dropped me off for an appointment with Ingaborg Thoresen, a highly regarded Biopath to the stars (no, I don’t know what that is either).
There is a note stuck to the door ‘Do not ring the bell. Wait in the shop next door’. It’s a sunny morning so I take a seat on a wooden bench outside the shop and wait.
Twenty minutes go by. I’m beginning to wonder if this is normal procedure for Ingaborg. I head into the shop and ask the lady behind the counter, “Do you know Ingaborg Thoresen? I’ve been waiting outside for an appointment with her.”
“Did you ring the bell?” asks the shop lady.
“No, There’s a note on the door saying not to ring the bell.”
“That’s strange.” She looks blank.
“Well I will just go outside and wait a bit more. If she happens to call you could you let her know I’m here?”
I sit on the bench for another five minutes. A strangling feeling of anxiety is rising in my throat. Jamie is coming to pick me up in just over half an hour and my consultation with Ingaborg hasn’t even begun. I realise that I’m attaching great importance to seeing her. I’m desperate to find out if there are any alternatives to chemotherapy. I’ve read so much scary stuff on the internet about how chemo may blight my life forevermore. I really want to understand all my options.
Another five minutes passes. I get up with the intention of re-interrogating the shop lady. As I do so, Ingaborg’s door bursts open and a rather cross looking woman bustles out.
“You’re very late” she says to me and the whole street.
“I’m not,” I answer in confusion, “there’s a note on your door...”
“What note?” she looks at her own front door, “That means don’t ring the bell if you’re early.” I bite my tongue and follow Ingaborg into her consultation room.
“So, what can I do for you?” She knows full well why I am here. I told her when I made the appointment.
“I’ve got breast cancer and I want to know what I can do,” I burst into tears. To be honest I think that I may have almost ascribed some kind of magical powers to Ingaborg, alternative high priestess of West London ladies who lunch.
Ingaborg looks taken aback. “Well clearly the first thing is to get you calm. Your stress levels are too high.” She shows me to a big reclining armchair. I sit back with my feet up. Ingaborg rotates a piece of machinery on an extending arm, positioning it in front of my head. Suddenly I feel as though I’m at the dentist’s. She switches it on and a bluish light shines into my face. “This is negative ionising light. You need to sit there until you calm down,” she commands and goes away.
Ten minutes later she’s back. “Are you calm yet?”
“I think so.”
“No, you’re not.”
I sip water and stare into the light. My shoulders drop a little more but I can’t help reflecting that I would feel a lot more relaxed were I at home on the couch watching repeats of The Wire on the iPlayer.
“We won’t have time for a consultation today,” says Ingaborg, “You have to come back another time.”
I try to mask my disappointment. “Oh well, shall we make an appointment now?”
“No. I will call you.”
The doorbell rings. It’s Jamie. He was never one for reading signs. Ingaborg makes it plain that she is too busy to show me out.
And that was the last I ever heard from Ingaborg Thoresen.
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