I’ve had a double mastectomy. I don’t find it straightforward to spell or to pronounce, but it’s the term I find easiest to use when I tell people what has happened to me. I just can’t put it in plain English, and say exactly what the surgeons did. This may change, but it seems too painful to me, and I worry about the people listening.
Generally, since I was diagnosed with breast cancer last summer I have tried to avoid couching things in terms that may be unclear. Years of writing articles on complicated financial products and schemes in my roles on the Guardian’s Money and Investigations desks have conditioned me to avoid jargon. I like to get to the point and use language that is accessible, rather than words that exclude people, and in the main I have taken this approach to my illness.
I have told my family, friends and strangers about the cancer and broken down the medical terms when needed (often with the help of the internet). I’ve relayed details of the chemo and the side-effects in most of the gory detail. When you are constantly being asked by nurses you’ve only just met to describe your bowel movements, you get less squeamish about some of these things.
I have avoided euphemisms, even when some of those involved in my care have reached for them. At the beginning, two doctors used the word sinister. They clearly meant cancer – what other sinister thing could be manifesting itself as a lump in my breast? I didn’t feel better because they didn’t say they were checking for cancer.
The other consultants and nurses I’ve seen have thankfully talked in plain English about what is happening and how they plan to treat it. They explained the surgery in simple terms, not just using the word mastectomy. Many of the websites I’ve turned to for information do the same.
I can talk in detail about the reconstruction and implants I had at the same time as the mastectomy – I’ll even show you a photo of the drains that collected fluid to prevent swelling. But when it comes to the first bit of the operation, I’d rather struggle to spell it than spell it out. Using the word mastectomy allows people to avoid thinking about what it really means – including me. People can understand I’ve had surgery without confronting what has been done and where. Anything else feels too visceral to me.
And people have responded in kind. No one has asked me for details. A couple of people have looked a bit uncertain about what I have been saying, but they were not close family or friends so I didn’t offer an explanation. My son has heard me used the word and not asked what I mean; if and when he does I will tell him, but for the moment he knows that I went to hospital and had an operation and have been recovering.
In the main I have found it helpful to tell people that I’m ill and what is wrong. Some of this is probably vanity – I don’t want people to think I’m tweeting my Wordle score because I’ve missed that there’s some actual news, or that I really believed a hat went with this outfit, or that I walk that slowly up the stairs.
Some of it, though, is knowing that every time I talk about it I get something back. People reciprocate with information, either their own health problems or things they know about breast cancer. I’ve had recommendations of services, I’ve been buoyed up by other people’s stories of getting through it, and found camaraderie with people who are going through it too right now.
They also reciprocate with kindness and lovely messages asking how I am. These bring a downside – I don’t like to deliver only bad news, so even at my lowest I’ve felt that I should provide some light with the shade – which can be exhausting. “Hi! Thanks for your text. My life has completely changed, I’m being pumped full of drugs that mean I feel dreadful and don’t recognise myself and I haven’t left the sofa for a couple of days – but the football’s on and I haven’t had to shave my legs since July!”
Sharing information has been made easier by the fact that the outlook has been reasonably good from the start. It is, of course, much easier to talk about tests that have come back all clear and chemotherapy that has been shrinking the tumour.
And I haven’t always wanted to tell everyone or to talk about it. I didn’t talk about it widely until I’d had enough tests to answer their questions about the extent of it. I didn’t mention it to my neighbours for ages because I liked to have a space where I could talk about the weather and the cat, as in normal times. I didn’t tell my grandma because I didn’t want to worry her. And when she died last summer, I went to her funeral and pretended I was OK to those I hadn’t told. It was a celebration of her life and I wanted to talk about her, so answered questions about work as though I was still going into the office every day, and swerved questions about our holiday plans.
Telling people you have cancer is a bit like telling people you are pregnant. You don’t always know what people’s own experience has been, and so their reactions can be surprising. There is no guidance as to the best way to do it: is it OK to WhatsApp someone? Is it bad if it’s one of the first things you say when you turn up to drop off your child? (This did make one of my friends cry, so maybe it is.) Is it weird to tell the postie? Or less weird than answering the door at midday in your PJs and a woolly hat and not having a reason?
For all of these reasons I can see why people sometimes choose to keep their illness to themselves. And for some, privacy is important, or there may be issues with telling family or colleagues. But in the main, telling people about my cancer has given me strength. It has helped me process and make sense of what has been happening. I would recommend it, but on – and in – your own terms.