Tuesday, April 03, 2018

"It was HER cancer" (My Sister: Part 1 of 5)

My sister, Annie Caulfield, died of cancer in November 2016. I wrote 5 articles that got published in Standard Issue. I'm putting them up here -- if you're going through or have gone through the same heartbreaking experience, they may help you. You are not alone. 

There are no set rules when it comes to behaviour around someone you love who has cancer. Jo Caulfield shares what she learned from her sister Annie.

Something not in the Book of Etiquette, not that I’ve ever read one, is “How do you behave when someone you love gets cancer?”
The word that was used over and over again was “appropriate”. Annie would say people were “appropriate” or “inappropriate”. When people were inappropriate they would upset her, anger her, bore her or in some way displease her. You could be put off the visitor list for inappropriate behaviour.
Annie was outraged that a volunteer in the hospital had worn a mustard dress.
“A mustard coloured dress? Doesn’t she know there’s people in here with cancer? Upsetting us all with her nasty dress.”
It became a joke between us but it was based on something very important. It took all of Annie’s energy to try to get well; she couldn’t waste energy on things or people that upset her.
I think my sister dealt with cancer very well, probably most of us do – there isn’t much alternative. But it may be of some use to you, if someone you love has cancer, if I put down how she dealt with it and what I learned about how to be “appropriate”.
Oswaldthistle (pronounced Ozzle-twisle) sounds like a made-up town in a Dickens novel and has that feel too, a depressing ex-town in Lancashire which, whatever it used to be, it hasn’t been for a very long time. A perfect setting to get bad news. Annie sent a joint email to me and my brother telling us that she had been diagnosed with lung cancer.
That was a good way to find out. She knew we had each other to talk to and also an email rather than a phone call gives you time to just sit with the information. She doesn’t have to deal with your immediate outpourings of emotion. Well, that was her plan, but it didn’t work because I immediately phoned her.
At the beginning, I didn’t feel emotional because none of us had any idea what we were dealing with. That seems a good way to react: just take in the information they give you. There will be a plan of treatment; let them explain what will happen to them.

“Her Macmillan nurse said something that Annie really appreciated: ‘Yes, I do deal with people with cancer every day but I’ve never dealt with you and your cancer. How are you?'”

The one thing Annie said she couldn’t cope with was other people’s emotions. She didn’t have the energy to deal with me or anyone else falling apart and being upset. And also, being upset makes her think there’ll be a negative outcome. Therefore being upset is very “inappropriate”.
I then went and looked it up online. It said all sorts of things about ‘stages’ and that people died and something in me realised this wasn’t a good idea. Almost at exactly the same time I got another email from my sister telling me not to look it up online. There are very good reasons for this.
Her oncologist (a word I didn’t know before) told her there are so many variables in age, health and lifestyle that you can’t gauge how you will be affected. The other is that it was HER cancer.
If you are one of those people who thinks that someone with cancer wants to hear stories about other people with cancer – that they will find it interesting or helpful – well, let me tell you, in my sister’s case, that was (very strongly) the last thing she wanted to hear.
Your secondhand, half-truth about someone you know who has, or had, cancer? “Fuck them.” Remember that it is their illness, not yours; it is not gossip, it is not trivia to spread among your friends. Only tell who they want you to tell.
I think it made Annie feel almost unbearably vulnerable. She had to “circle the wagons” she said. Put herself in the middle of a very small protective circle.
I never read anything about cancer after that. I just got all my information from her. This did mean that I was completely ignorant of the facts but that was no bad thing for either of us. If she said she was having the special chemo where you didn’t lose your hair. I believed her.
She had been telling me tales all my life; this was just the same as when she had said that David Cassidy was her brother, not my brother as well, just her brother. I didn’t question it. Then when the hair fell out we didn’t mention it.
Some people are more open about it. Annie didn’t want to be defined as a cancer patient; it was no one’s business so I never saw her without a baseball cap. We did discuss how it was important not to look like the ‘spiritualist’ in an Agatha Christie drama: “I’m very wary of silk scarves Jo. That can go very wrong. Please tell me if I look like a crazy old actress or worse, Su Pollard.”
Her Macmillan nurse was incredibly helpful. They gave invaluable practical and financial advice, but also she said something that Annie really appreciated: “Yes, I do deal with people with cancer every day but I’ve never dealt with you and your cancer. How are you?”
It was important for Annie to feel listened to, to feel that she had someone she could ask all those questions to, someone completely safe and non-judgmental.

“One day, we were all round the bed, the whole family together. We are not that kind of family. I suddenly saw it from Annie’s POV; it looked like a deathbed scene.”

When she was having chemo I went round to her flat and saw that someone had sent a Get Well card. That seemed very inappropriate. Sort of ludicrous – it’s cancer for God’s sake. A Get Well card is too general, almost sarcastic. I think it’s better to look for cards that are personal or will make them laugh.
I don’t want to share all the details of her illness but the hard part isn’t the treatment. Easy for me to say. Obviously the treatments for cancer are not easy. Chemotherapy is almost Victorian in its brutality. It’s still a great sledgehammer approach.
The treatments are harsh and knock the stuffing out of you and it took all Annie’s strength to try to keep strong enough for the treatments. And she would get angry and frustrated – but only because it didn’t seem to be making her better anymore. She would have undergone any treatments if she thought it would make her better.
The hardest part is when they say, “She can’t take any more treatment.”
Because I had listened to Annie and not bothered with facts, I had no idea that the cancer had spread. She had the strangest ability to seem well. Always full of talk and plans. I had been visiting her for several days before I realised that she couldn’t walk. I tucked in her bedding and her legs were just dead weights.
This is when I lost my way. I didn’t know what was “appropriate”. I was scared I would say something wrong and upset her.
The best advice I got was from her old friend Sarah. Sarah had lost her long-term girlfriend to cancer and she had learned a lot about how to be “appropriate”. She said, “Just take your lead from her.” D’oh! Of course. It was the best advice: go where they want to go; talk about what they want to talk about.
Don’t behave in a way you normally wouldn’t. I wrote my sister an email saying how much she meant to me, not quite that soppy but a bit like the sort of email you would send to someone… if they were dying.
She was furious. Quite rightly. I wouldn’t have done that normally. It was not for me to even hint at the seriousness of the situation. And also it was selfish. Just double check if you are doing something to make yourself feel better or them feel better.
Her doctor said, “Don’t take away her hope.” It was important to Annie to keep making plans, to keep thinking through writing projects. She had her brilliant brain; it was still in full working order. She took huge comfort from her doctor saying to her,”You’re still the same woman I met 16 months ago; you’re still exactly ‘yourself.'” She repeated this a lot. It must have meant a great deal.
It was difficult when she was finally moved into a hospice. Difficult because at first we didn’t know how to behave. One day, we were all round the bed, the whole family together. We are not that kind of family. I suddenly saw it from Annie’s POV; it looked like a deathbed scene. From then on we co-ordinated our visits so we weren’t a depressing family group at the end of her bed.
No-one did any weeping or acting like she wasn’t going to get better. We always acted like she WAS going to get better.
She wasn’t a fool; she knew.
I always texted her partner Martin (I’ve put his name because I can hear Annie saying, “If you just put ‘partner’ everyone will think Martin is a lesbian!”). I texted him to check it was OK to visit. Just because someone is ill doesn’t mean we should lose our manners. I wouldn’t have dropped in without asking before she was ill, so why do it now? Being ill doesn’t mean a loss of your right to privacy.

“Life can get very small, but a big person can do a lot with it. Annie had her brain and her voice, and she could enjoy the people she loved; that’s huge.”

Annie’s friend Sarah was great at doing little things that would enhance Annie’s life once she couldn’t leave her bed. Here’s a list of Sarah things…
Room spray: a citrus room spray from the Body Shop. Annie loved it; it stopped the room smelling like a hospital. And it was a thing Annie could do herself. She had a horror of her room “smelling of bags of wee”.
Jo Malone hand cream: She LOVED this. A brilliant gift. It was also a lovely thing to do for her, give her a hand massage, just a way of having a bit of soothing contact.
A pedicure: Genius. Annie wasn’t particularly girly but she was looking at her toes at the end of the bed all day; why not have them look pretty?
A bright coloured soft blanket: again, like the room spray, it just made it a bit more like a home.
Trolls from McDonald’s Happy Meals: silly things that became running jokes. Though Annie said the trolls were because Sarah wanted an excuse to buy a Happy Meal.
Martin was constantly being sent to buy face wipes: Annie liked putting on her makeup and the nightly ritual of taking it off. Like it was any normal day.
Annie didn’t want to talk much about the outside world towards the end. Not in a depressed way, but because she had created a world of characters and running jokes in her new world, the hospice.
She and Martin laughed all the time. Well, not all the time. Sometimes she would be grumpy or snappy. Be prepared that may happen and just let it roll off you. Your feelings are not what’s important right now. It’s about them.
What can you do to make things better for them? Don’t talk about a load of things that they can’t do, just be a bit sensitive, talk about them and what they want to talk about. This, of course, is how it was with Annie. Other people may be completely different: they may want to constantly talk about what’s going on in your life. That’s good too. But only if they ask you to do so.
I was amazed at how Annie adapted to each new stage. I say ‘stage’: it was actually her deteriorating, but her life force was so strong, she never seemed ill.
I would forget that really, all she could do, was move her head and her arms. She couldn’t use a knife and fork but discovered the joy of eating scampi with her fingers.
People say so casually, ”Oh when I can’t feed myself and someone has to wipe my bum, pull the plug, what kind of life is that?” How foolish and wasteful. Annie would have taken any kind of life she could get.

“Don’t try to wrestle a person on morphine back into the real world. Go off into their wonderful world and have fun with words.”

Life can get very small, but a big person can do a lot with it. That sounds very close to being some sort of hideous inspirational quote but it’s true. She had her brain and her voice, and she could enjoy the people she loved; that’s huge. She liked being wheeled out into the sun, she would have been so able to live like that. Limited though it was, she would have taken it and been happy.
Remember to enjoy the person while you have them. Obviously I am talking about someone who was not going to get better. Lots of people DO get better.
One of my sweetest memories is feeding her soup. It’s a small moment but to be able to laugh with your big sister as you try to get pea soup in her mouth is worth being alive for. And she bloody loved that pea soup.
Towards the end, I got frightened again. The morphine dose had gone up and Annie just seemed to be rambling and talking rubbish. She then repeated the same nonsense and started laughing. Martin laughed as well and agreed with her. “Yes darling, dogs should be allowed wine.”
For the first time I thought, “where’s Annie?”
“Just go with it,” Martin said. Again, great advice, don’t try to wrestle a person on morphine back into the real world. Go off into their wonderful world and have fun with words.
And it was still Annie. It was just Annie on morphine. She knew she was being funny, she was doing what she had always done, she was playing with words. She enjoyed the sound of the words and would repeat things over and over, we laughed a lot and invented a song about Dr Funkenstein. She was still herself.
At the end, she just slept more. We had a few evenings where we sat in her room, talking and laughing and drinking wine. Every now and again Annie would open her eyes or laugh. Probably at something in her own head. But I hope that it was nice to drift off to the noise of people who loved her.

We were being silly, which was very appropriate.

If you’ve enjoyed* this article you may like to donate to Macmillan Cancer. I have set up a fund in Annie Caulfield’s name. Just a pound or two would make a big difference: macmillan.tributefunds.com/annie-caulfield

*I know "enjoyed" is a completely inappropriate word to use.

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