"At eighteen you have that resilience, that strength." John Lloyd is talking about about Victoria Duval - the American tennis player recently diagnosed with Hodgkin lymphoma. I'm watching a bit of Wimbledon that I missed and this comment really irritates me. As if her strength or resilience have anything to do with whether or not her particular cancer will respond to the treatment she receives. Being ill is not a tennis match. Cancer cells don't care that Victoria is a tennis player who trains every day and is in peak fitness.
Fingers crossed that she responds well to treatment, but what I want to examine here is the language people use around severe illness. I've been suffering from breast cancer this past year, so have experienced a lot of bloody annoying comments from people.
Here is a rough guide of things not to say to someone going through breast cancer treatment - or indeed treatment for any chronic or life-threatening illness:
1. “You've got to keep fighting.” No they haven't. This is neither a war, nor a boxing match against the cancer cells. Chances are, if you're having chemotherapy or radiotherapy you'll be exhausted, vomiting, sleeping, collapsed on the sofa. You won't be clad in armour and swinging a mace around.
2. "You've got to be positive." Recent studies have shown that a positive attitude has no effect whatsoever on outcomes. You haven't got to be anything, and it's no-one's business how you feel about having suddenly acquired a life-threatening illness. Be however you want. Of course, if you can, keep up as many of your normal activities up as possible, it might help you feel better. If it makes you feel better to spend your months of treatment in bed, or watching Poirot on the sofa eight hours a day, that's fine too.
3. "You're so strong, you'll beat this illness." Physical or mental strength may have an effect on how quickly your body recovers from the aftereffects of certain treatments, or they may not. At chemotherapy, a lot of the septuagenarians were laughing and joking with each other as they sat up in chairs hooked up to their drips. One lady even wheeled her drip outside so she could have a crafty fag every forty minutes. On the other hand I lay collapsed in bed, dozing, despite my age (thirty-four) and my five gym sessions per week. Despite exercising all the way through my treatment, I spent five weeks of radiotherapy asleep or collapsed in front of Poirot or Marple on the sofa. My apparent youth and strength made no difference whatsoever.
4. "Everything will be fine after the operation." This one was and still is a major source of irritation to me, my parents and my brother. The cancer was in my skin, there weren't going to be clear margins, the operation was going to be a six-hour epic where the hump I'd been growing on my back was flipped over to my front. All my lymph nodes were coming out - huge risk of lymphoedema - a huge section of back muscle would be carved out and a whole boob lopped off. There would be months of recuperation. Assuredly, everything would not be fine after the operation.
5. Blanket statements such as: "I know you'll get through this / overcome this / you're stronger than this / you'll get better." No, you don't know anything of the kind. Obviously we hope I won't die of it, but please say that instead.
6. Minimising language: "I hear you're a bit poorly" and suchlike. I'm not a bit poorly! I've got a terminal illness. By and large the reactions that we found helpful and supportive have been people saying, "oh my g-d how awful, poor you, I can't imagine what you must be going through," or a kind cousin who said "I can't imagine how I would feel if this was one of my daughters" or "you're too young for this" or "you've been through so much already". Don't be afraid to say how awful or unfair you think it is that your friend or relative has been diagnosed with this horrible illness. A genuine expression if horror will be far more appreciated than an attempt to minimise the horror or suffering the ill person is experiencing.
7. It's fine not to talk about the illness or treatment but simply to do something nice for your friend or relative. When I'd just received my cancer diagnosis and started chemo, a friend arranged for us to get Minx foil wraps on our toenails (brilliant - last for about six weeks). That was a lovely gesture and really appreciated.
8. Don't make offers of help such as "I'll take you to chemo" unless you really intend to do it. Likewise "if there's anything I can do to help, just ask" is not actually very helpful as the ill person or their family probably won't ask. What we really hoped people would offer to do were simple practical things: taking me to the supermarket when I was trying to manage in the flat alone between chemo and the operation, for example. Usually we didn't feel like going out for dinner for hours or to the theatre, and after about twenty minutes we'd had enough of visitors. Mum hated it when people phoned every day to say, “How are you?” She didn’t want to talk on the phone, and after all, what was there to say?
9. "Have you tried eating broccoli / cutting out dairy / drinking spirulina? My friend had prostate cancer and he cured it by injecting himself with satay sauce / snorting lentils / kale suppositories." Please don't share your quack remedies or diet myths. The ill person is being poisoned by chemotherapy and burnt by radiotherapy. They would rather not be having these horrible treatments, but by and large these treatments have the most successful outcomes. It is amusing when people start with "have you tried broccoli?" I'm vegetarian and eat a couple of heads of broccoli per day. My poo is green. If broccoli had a protective effect against cancer I wouldn't have got it in the first place.
10. Please try and think before expressing an opinion about the ill person's chances, prognosis, treatment or any of the above. Or before asking, "So what did your oncologist say?" Chances are the ill person can't remember what their oncologist said, or spent their appointment crying and saying "I hate you" to their oncologist. And the patient doesn't want to give a blow-by-blow account of every appointment to everyone who asks. Really, it's none of your business.
11. Another pet hate, particularly of Mum’s, was people who, on hearing of my diagnosis, said: “Oh my Grandma got breast cancer when she was seventy, she recovered and died of something else years later” and then launched into a blow-by-blow account of their Grandma’s treatment when she was seventy-three for a different form of breast cancer in the early 1970s or so. Generally, the people who featured in these anecdotes were far older than me, with far less extensive tumours, so their experience was irrelevant. These stories are of very limited use anyway: everyone’s cancer behaves differently.
12. "Wow you're on such a journey. You’re going to learn so much." The concept of the Cancer Journey, as peddled by women's magazines, is another thing that annoys us. The prevalence of the notion that cancer would act on the successful business woman's life as a wake-up call, encouraging her to cut down her working hours to spend more time with her husband and children just simply didn't apply to me. Aged thirty-three, stuck in an entry level job, single, diagnosed Bipolar 1 aged nineteen, the last thing I needed was to slow down, smell the flowers etc. I'd done all that years ago, in recovery from my mental disorder. I object to the whole idea of the Cancer Journey anyway, and all that "what doesn't kill you makes you stronger" stuff.
This stems, I think, from people's fear and horror of severe illness. They shrink away from the unpleasant physical realities of the treatments and such side effects as hair loss, surgery, drains and even blood. The calmest people were, inevitably, my cat's vets, the ladies at carriage driving, country friends who experienced the cycle of life and death on farms and Mum's science teacher friends.
My parental friends, were, perhaps inevitably better at dealing with me than my younger friends when I was undergoing treatment. Some of my cousins were brilliant, and a special mention must go to my cousin's new girlfriend, who arrived on the scene when I'd just been diagnosed and has been lovely to me throughout. My boss was wonderful: sending little presents and cards all the time. Don't underestimate the power of a handwritten card: it was, and is, lovely to receive them.
Some gestures stand out a year later: my mum's biology teacher colleague who turned up with an orange drizzle cake as soon as she heard; my boss arranging tickets for my best friend and me to see American Psycho at the Almeida; being taken by my uncle to see Watford play at Wembley (we wuz robbed); and the gift of the world's best kitten from my much-loved ex-boyfriend. My next door neighbour at the flat also watered my plants whilst I was in hospital, which was a great help.
I wish that there was a list of ten things to say. Maybe next time? I guess the main thing is to be genuine, be over-dramatic rather than minimising, or simply turn up armed with a hug, a smile and a little treat.