Anna Donald: What’s maddening about living with advanced cancer

Anna Donald It’s time to tackle Richard Smith’s third request for information about living with advanced cancer: what’s maddening about it?

Hmmm … where to start? There are so many maddening things about cancer.

Some are obvious: not being able to control your destiny in the illusory way you are used to. Not being able to work. Being too tired to see friends. Not having children. Not being able to adopt children because they’ve been through enough trauma, usually, without you dying on them.

Some things break your heart: not knowing whether you’ll be there with your husband as he progresses through life and grows old. Or with your parents to love and help them when they grow frail. Or with your nieces and nephews when they need somewhere to stay and someone to talk to who is not their parent. Or with your colleagues and country to help it avoid daft heath care decisions as its budgets grow more and more pressed with ageing populations and ever-higher priced health technologies.

Some things are maddening because they are persistent small reminders that you’re not like other people anymore: not being able to put necklaces on by yourself because your fingers are too inflamed by the chemo to fasten the clasp; taking twice the recommended time to complete bush walks; having to sit down in the mall to catch your breath along with all the 80-year-olds and their wheely trollies. Buying a wheely trolley because you’re too weak to carry shopping. Unexpectedly meeting fashionable friends while in possession of said wheely trolley and being unable to camouflage it; hide it; pass it off as the 90-year old’s next to me (she has her own); destroy it in spectacular explosive fashion (as they do lorries parked outside Downing Street); swiftly become invisible so at least the wheely trolley remains unconnected to your person.

Some are par for the course: the 1000th time I get asked: ‘Does cancer run in your family?’ NO NO NO. NO-ONE in my entire extended family, to my knowledge, has had breast cancer or any other cancer for that matter. My family is ridiculously long lived. Apparently my great grandmother was the oldest woman in England for a while. By getting a life-threatening disease at 42 I am charting new territory. Can someone please tell the public that very little breast cancer is familial?

And, the next common question in response to “I couldn’t have children because of the chemotherapy” comes “didn’t you freeze eggs?” As if this is the easiest thing to do in the world. Again NO: it’s not a good idea to freeze eggs when you have hormone sensitive breast cancer because of the surge of oestrogen you undertake which is nectar to cancer cells.

Some things are just bloody annoying: delaying or avoiding trips because they’ll be too long and tiring and I’ll collapse in a heap when we arrive and complain a lot; refusing interesting work because I know I don’t have the energy to follow through. Passing up fun, boozy dinners and the like because I can’t eat or drink anything that will be served and, with an unpredictable violent cough, can’t sing for my supper. Being afraid of going to the movies or theatre because I might have to sit out the production coughing by the popcorn machine or risk dirty looks from other members of the audience.

One very maddening thing is the vast sea of confused and contradictory information about alternative (and mainstream) therapies, diets, supplements and the like. The lack of the most elementary information (eg cases or case series) about effectiveness, harm, and acceptability of treatment of about 90% of alternative treatments is woeful. While I know it’s difficult getting funding for research, at least practitioners could keep logs of who they’ve treated and what happened. I don’t buy the victim position of some alternative practitioners who seem to spend more time projecting anger onto the medical profession than figuring out how they might provide basic documentation about what they’re doing, for the future benefit of all their clients. The murky mess of claims and promises to people with cancer, who are vulnerable and lack any way of knowing what’s what, is quite unacceptable. We need a new form of Clinical Evidence of alternative therapies that summarises whatever information might be available, clearly stating none if that is the case, and what the treatment entails.

Of course that doesn’t mean people shouldn’t try new things – I’m trying lots – but at least know what they’re getting themselves into. Otherwise people just swim about in the dark, trying this and that, as if they don’t already have enough darkness to cope with.

Some things, of course, are not maddening at all. Not having to go to boozy dinners when you’d rather be at home watching a DVD. Not having to wear high heels every day. Taking a break from the hamster wheel that most professionals seem to experience, myself included. Not sure I’ll ever get back on it. I don’t have enough hair to be a hamster.

Anna Donald, Blog 14