Saturday, 4 October 2014

55. What (not) to say to a cancer patient

I've read them, the lists of Do's and Don'ts.

I would like to put them all in the bin. Because among the advice, there is bound to be something that makes me think That sounds like the most annoying thing someone could do or say.

How about these, for example...

Tell her that you admire the way she is fighting the cancer / you are sure she will beat the cancer. 

Fighting cancer? How on earth does one do that? And even if I could, how would it help? All I can do is wade through the treatments and hope for the best. And if I recover, it's not because I've been a particularly combative patient able to beat the most fearful opponent, but because I have been lucky and because my doctors have found a particularly effective treatment.

Give her positive stories. "My Auntie Ethel had exactly the same thing and now she is fine."

Good for Auntie Ethel. The thing is, I know that there are people who have recovered from breast cancer, but I don't want to hear about them. They don't reassure me. They just make me feel inadequate. I am clearly meant to be cheered up by Auntie Ethel's success story, but I'm not.

Don't stop telling the cancer patient about the outside world. People with cancer still need to hear all the gossip and have a laugh.

There have been months on end when I simply could not cope with anybody telling me anything about the outside world. I didn't have the emotional energy to listen, let alone laugh.

The thing is, every cancer patient is different. So let me simply tell you what has helped me.

1. What to say when you first hear the cancer news?

The short answer is: SAY ANYTHING!

I didn't mind anyone "getting it wrong". I didn't even mind, really, if people told me about their auntie Ethel. I knew they were doing their best. The absolute worst was people saying nothing at all, avoiding me, for fear of saying The Wrong Thing.

I knew it was difficult for some people to know what to say. I tried to make it easier for them by giving them the cancer news myself. (See? I have mentioned the C word. So can you.)

It's worse, I thought, if you hear it on the grapevine - particularly if you are not a close friend but more of an acquaintance. Should (or even: could) you mention Cancer when you see me? (The answer, in my case, is Yes please, but I know of women who really didn't want to talk about their breast cancer, so I understand your hesitation.) I ended up sending out a mass email to everyone I could think of, including people I rarely speak to.

The most helpful responses were the immediate ones.

I loved the spontaneous outpourings of shock and horror, because they justified my own shock and horror. I was especially surprised and heartened to hear from people I didn't expect to be so concerned about me, including colleagues, acquaintances, distant friends, distant relatives.

"Bloody hell, Irene!" one colleague wrote in an email. Not language I would dare use, but boy, was it good to hear.

I didn't need platitudes. It was fine (in fact, wonderful) if people simply wrote "I'm shocked and I don't know what to say. I'm thinking of you."

The hardest thing was not hearing from close friends, or not immediately. I'm talking about friends who are in touch regularly, who are usually fairly up to date with my life, and who care. I know they care.

Now I've told them I've got cancer, and I haven't heard for days and days. What does that mean? Perhaps they didn't get the message? Should I tell them again? If so, how? (Telephone calls were too exhausting and potentially too emotional.) 

Sometimes, it was indeed because they hadn't read their emails. But a few friends were so shocked that they simply didn't know what to say, and therefore said nothing.

So if there is one piece of advice, here it is: Say something. Anything. At once. Just so that your friend knows you have heard the news and are thinking of her.

Even if you don't know the person that well. If you are wondering whether you are a good enough friend to justify getting in touch at such a difficult time: don't worry. Get in touch.

And when you see the newly diagnosed patient, the first time after you've heard The News, I suppose you shouldn't really ignore it. (Even though there may be other cancer patients out there who absolutely want the whole thing ignored - see aforementioned Every cancer patient is different.)

Personally, I am with the cancer patient who wrote "It is a bit like me getting a bright green mohawk and them asking where I bought my shoes."

2. What to say as time goes by?

Same answer, really. Keep saying something.

I have felt so supported and strengthened by the continuing trickle of cards and emails. Friends who keep in touch, dropping the occasional message, I am still thinking of you.

I don't need advice. I don't need anyone to say A Helpful Thing. I just need to know that I am not on my own, going through all this. It may get boring for you, to keep sending me messages, but it is never boring for me.

3. Post? Email? Phone? Visit?

Post or email or text or blog or FaceBook. Any time. That way, I can read it at my leisure and respond at my leisure. I can even do it lying down. It was particularly thoughtful of people to write "PS, no need to respond."

There have been many times when talking on the phone was too much. Even now, I still need to be in control of who I'm speaking to, and when. (Mornings have been best. Evening are hopeless. I'm floored in the evenings.)

Telephone conversations, however lovely, are tiring. With a limited amount of energy each day, I have needed to plan how to use it. Sometimes, talking to friends was part of the plan. Often, it wasn't. I've preferred it if people let me know that they wanted to call, but left it up to me to tell me when was a good time. And didn't take offence if I never called, or told them "sorry, not this week."

Close friends and family are an exception. They are the ones who don't need explanations, who know exactly when my good and bad weeks are, and who understand if they ring and I tell them Hello and goodbye. They can visit any time.

Visits have been welcome, but only on my terms. I have been grateful for people who wanted to come and see me, but who didn't mind being told that they couldn't, not now, not this week. Next week, perhaps. And then only for a short time. (It's been lovely to see friends, so don't stop proposing visits.)

I haven't had the energy to keep friendships going.

Reading other cancer patients' stories, it seems I am not the only one. I may sound as if I am OK on the communication front, blogging away, talking to people. But the truth is, initiating contact is simply too much for me. Even with my closest friends.

So, for most friendships, the usual pattern has changed. Getting in touch is no longer a mutual thing. It's you who needs to get in touch, again and again and again.

This has been hard for some friends, I think. One good friend, who used to text and phone several times a week and always knew exactly what was going on in my life, has largely stayed away these past six months. This has been harder than I like to admit.

People's silence has me worrying... Are they frightened to intrude? (Good friends can never intrude.) Are they worried that they can't help? (They can, just by getting in touch). Or say the wrong thing? (They can't. See above.) Are they just not able to cope with my misery? (In which case, I clearly mustn't contact them either... but it does make me wonder whether I've just been a Good Weather Friend.)

Most people, however, have been the opposite, and it's kept me going. And in this digital age, I've received a steady trickle of handwritten envelopes in the post. Proper envelopes, with a stamp on it. It doesn't even resemble a birthday, because birthday wishes now happen on FaceBook. It's like the Olden Days. Lovely. 

Having said all this, I've had a luminous insight into people's responses and reactions, something I've never heard about but which now seems so glaringly obvious.

The epiphany happened like this.

One moment, someone told me about their Auntie Ethel's recovery from breast cancer. It was decades ago! She lived happily ever after! So, be positive! It was the evening before my diagnosis. I was with a group of friends and couldn't keep it dry when telling them about this alarming new development in my life. Auntie Ethel's story annoyed me. I felt un-heard, because my tears and fears had nothing to do with a worry that I might not live either happily or ever after.

The next moment, another friend told me about their Auntie Grethel who had recovered from breast cancer and lived happily ever after. And I felt supported by it.

Why? What was the difference? What I figured was this.

It doesn't matter in the slightest what people say. The only thing that separates the supportive from the unhelpful is their focus.

Is their focus on me, or is it on themselves?

People whose focus is on themselves might as well say, Look At Me, I'm Saying A Helpful Thing. I can sense that they worry about how they come across. There is something self-conscious, insincere or artificial about their words. They speak in platitudes.

I then have to spend unwelcome energy on making them feel better, or blocking out their comments.

Auntie Ethel's niece made her comments because she was trying to find something Helpful to say that would make her (not me) feel better.

Auntie Grethel's niece was upset for me. My story reminded her of Auntie Grethel. She told me about it because my situation made her reflect on Auntie Grethel's.

It's a thin line, and it's hard to explain the difference between these two Auntie stories. But it seems that as a patient, I have developed a highly sensitive radar for insincerity, and for sniffing out people who would actually rather not be talking to me at all. I suspect it is the same for other patients, and probably also for the bereaved.

The helpful people may say exactly the same thing, but they say it with their hearts open to me.

When they tell me about Auntie Grethel, they listen to my response. They don't try to reassure me. This means that I can then tell them I'm feeling shaken, not because I worry that I won't follow in Auntie Grethel's footsteps stretching into the future, but because my life and my perspective has changed so alarmingly.

Don't give advice! say the Do's and Don'ts lists, and mostly I agree. 

If people give advice, I only have to spend energy on explaining why I am not following it. 

But then I find myself looking at the little bottle of Bach Rescue Remedy, bought at the suggestion of our Italian friend. I'm keeping it in the kitchen. I doubt whether I'll use it (although I should perhaps have taken it on That Walk), but it reminds me of the Italian friend's warm and loyal friendship stretching back decades. I might have joked about her insistent advice, but in truth, it spoke of such love and concern for all five of us. That was very welcome indeed.

Out with the list, therefore. There are no Do's and Don'ts.

The only thing that matters is your spirit.

If you speak out of love, I may not hear your words or take any notice of them, but I will hear your heart.

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