I have seen a couple of revealing ‘lists of things one should not say to people with cancer’. They are written by people with more experience than me, who have understandably heard it all before and become irritated by comments such as ‘You’ll be fine,’ ‘You’ve just got to be positive,’ and ‘if there’s anything I can do….’
Although these lists are probably helpful for carers and others to read, I totally don’t mind if people get any ‘etiquette’ slightly skewed. I would much rather people came up to me for a chat, any old chat, about treatment, hair, dogs, whatever, than hang back thinking ‘omg, I might say the wrong thing.’ I remember a few years back seeing a fellow Mum from Junior Operatics, Sally, in the street wearing a turban thing, and I did feel awkward and like I didn’t want to say hello because I might blurt out the wrong thing about her hair loss or her illness and also I felt bad because although I had heard she had cancer, I had not turned up at her house with cakes.
I can’t remember this, but Sally assures me that I ran up to her and said ‘Oh, god, Sally, has all your hair fallen out? That happened to me when I was sixteen!’
The fact that I was in possession of a shock of tangles at the time really helped her, she claims. I still feel sure that I said the wrong thing, but I am still glad I said something.
It’s the same with teaching flute. I am aiming to help my pupils become experimental, functioning players. I want them to be able to pick up any flute, any piece of music and give it a go. Better to play something than be afraid they will get it wrong. If you get too hooked on perfection in your way of learning you can get a bit blocked. Cave men and women were picking up bones in the forest and fashioning them into flutes. Who are we to impose strict rules upon this ancient pastime and claim that a piece has to be played exactly like this, again and again, the same. I say, play lots of pieces, duets, trios, different ones every day, some hard, some easy, some made up on the spot.
I have been too busy to blog, because with the absence of symptoms life scooped me up again and I forgot about the cancer for a few days. However, I rang the trial nurses early in the week to say that I would like to join the Denosumab trial. On Friday two letters arrived. The first was from the Department of Nuclear Medicine. It said that I am going to have a bone scan ‘NM bone whole body‘ on the 3rd of May, 9.30am. Pictures will be taken three hours after I am injected with a ‘carefully chosen’ radioactive substance . (I know, I think I had not quite picked this up from the info sheets.) I should avoid pregnant women and children for 24 hours afterwards. I looked down the page. ‘Are nuclear medicine tests dangerous?’ Their answer is ‘No. Harmful effects are very rare.’ ‘You will receive some radiation which is comparable to some x-rays. However, to avoid unnecessary exposure to others, where possible you should minimise close contact with small children and pregnant women for the rest of the day.’
Worrying? Yes, a bit. Images of poor yellow Litvinenko swim to mind. When I told all to the gin group they laughed. Mad Lucy has spent most of her life working to seek out asbestos, so is probably horribly contaminated herself. Claire flippantly likened me to the Ready Brek kid, glowing wierdly through the gloom. But she thinks it’s fine: the radioactive stuff apparently breaks down quickly.
The other letter was from the CT department saying I was to have an abdomen/thorax scan the same day, but at 6.30 in the evening. Probably won’t be worth going home in between. I could visit Gwanny. Oops no, don’t want to contaminate her. I could drop in on someone I really don’t like. Could sit on the river bank and contaminate the ducks. Or sit in a caff and contaminate unsuspecting coffee drinkers.
Sigh. I’ll sit in the car. On my ownio. Or do yoga on a grass verge somewhere.
Anyway, anti-cancer stuff has as usual been going on. I do yoga in the ponies’ field while the dogs chase rabbits. I am eating ryvita, houmous, tomatoes and seaweed. Still making soup every day, with miso, shiitake mushrooms, spinach, etc. My friend Janet said I must make nettle soup as it is bursting with good things. So I took gardening gloves and scissors on a walk and cut the tops of fresh nettles. Don’t worry about doing this, just think, ‘little bastards, how often did you sting me when I was little?’ It’s best to find inaccessible, tall ones that won’t have been piddled on by dogs or deer.
To make the soup, first shake the ladybirds off the nettles into the hedge. The only person I knew who ate ladybirds was my brother Fergus, and it is sadly not advisable to emulate his way of life, although he definitely would have approved of nettle soup. Wash the nettles and drain them. The little bastards stung me on the thumb while I was doing this. Sizzle an onion in olive oil, with garlic if you like it, add a couple of diced potatoes and the nettles. Stir and cover with nearly boiling water. Add sea salt and pepper. Simmer gently for about twenty minutes. Beeze it up in the beezer. At the end Janet adds creme fraiche. I will try soya cream. I made the soup last night and will eat it tonight. Will post a picture later.
My cousin Kate in Paris says maybe not to go OTT with the diet, as the chap whose diet book I am trying to follow, David Servan-Schrieber, died last year. However, he first discovered his brain tumour when he was thirty one, and died aged fifty, so he did manage to hold it at bay for nearly twenty years. Without the diet he might have died after five, who knows? He thought that playing in pesticide-sprayed corn fields from the age of about two til nine gave him and his two cousins their cancers.
I have discovered a new site, called NHS predict. You type in what you’ve got, like Invasive Ductal Carcinoma or whatever, with a few details like your age and the grade of cancer, whether it’s HER2+ or not etc and they predict how likely you are to survive. Quite interesting really. With chemotherapy, hormone therapy and Herceptin in addition to surgery, ninety three percent of women with my illness should still be around after ten years. They don’t say for fifteen or twenty years.
Today I am going to a ‘Face Forward’ session at the Mary Wallace Centre. It’s to help people with issues surrounding hair loss. I have no idea what it will be like but I suspect it will be fun. Will report on this later.