'I would have paid any price'

‘I would have paid any price’

In February last year, she underwent a radical hysterectomy, which along with the removal of her uterus, included her fallopian tubes, her cervix, part of her vagina and a large selection of pelvic lymph nodes. Her lymph nodes were, as it turns out, clear. Such radical surgery meant she did not need chemo or radiotherapy. She now is cancer free, with three-monthly check-ups, and has only a one in 10 chance of it returning. Screening and surgery saved her life.

But it’s the lifelong effects of her treatment, and the different perspective she gained when she became ‘a number’, as she puts it, that have led her to make a new BBC documentary, Making Sense of Cancer with Hannah Fry. It is full of footage Fry filmed on her phone throughout her cancer journey, and it’s what makes the film so humane and what qualifies her to interrogate survival rates and the statistics related to effective treatments.

‘There are hours and hours of me crying. I wrote a long diary too,’ she says. She is a very private person and initially ‘the diary and footage were so I could have a record of how I was feeling in those moments’.

It was her friend, who runs a TV company, who convinced her to make a documentary: ‘He said, “This is not only footage of somebody with cancer. It is also the story of somebody who has spent their entire life thinking about numbers and trying to rationalize things.”’

This is what makes the documentary unique. As Fry explains, she made the documentary because her blind fear of cancer was at complete odds with her life as a mathematician, analyzing numbers and data, unhindered by emotion. In the documentary, she ends by saying: ‘The chance we think we have of dying is the only number that matters… but we are not having honest conversations about the benefits and costs of treatment, and only when we do can people work out what they most care about and what’s right for them.’

It is what the documentary makers call her exploration of ‘almost a medical taboo’, to ask the question: ‘Are there times when a life-changing treatment might not be the right thing to do?’

In the end Fry opted for radical surgery mostly, she says, because once she was referred to Guy’s Hospital, she was presented with only two options: the first was the removal of just her cervix, leaving her womb and lymph nodes intact. This allowed for the possibility of the third child she and her husband wanted, but at the risk of the cancer spreading and also miscarrying her future baby due to the operation on her cervix. There were also those enlarged lymph nodes that seemed to threaten her life. The second option was the removal of everything, to be safe.

‘I didn’t push it,’ she says of the telephone conversation in which she had to decide. ‘I think partly because it was the pandemic and it was a phone call and I think if you are brought up in Britain, well, I am trained to be grateful and not want to waste [doctors’] time. I really didn’t want to ask more questions. It was “we have a slot for you in three weeks to be on the table. It’s a good slot. Do you want it?”’

The fact that her lymph nodes were clear in the end meant she could probably have got away without a hysterectomy. There were two consequences of this treatment: she lost the chance of another child – ‘letting go of that has been part of my acceptance of cancer’ – and she went on to develop lymphedema, a lifelong condition caused by the removal of the lymph nodes . She was not prepared for this. Today her legs swell from undrained fluid and she will have to wear pressure garments, tights or shorts, for the rest of her life. How could she not have known about this? Was it because the pandemic changed cancer care generally? Because she did not ask? Or was not told?

‘There was a time last year when I was just recovering from everything and emotionally bringing myself back to life, and the lymphedema was a real hit, a real blow. I felt very angry about it,’ she says.

‘If I went back in time, I don’t know if I would have made a different decision, but I would really like to have felt like I had more agency, or that I really understood what the calculation of risk was, and that my values ​​and my level of risk were taken into account. I don’t always think that is the case [with cancer care].

‘I was so scared and so scared for my girls, I think I would just have taken any risk that I needed to. I would have paid any price.’

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