‘Death. Life’s change agent.’

February 2002, Ronnie switches on our latest 'new' computer

Today’s post is not the one I’d scheduled. Yesterday the world woke to the news that Steve Jobs had died. Last night we got out our photo albums and looked back at the memories of computers we’d owned. Apple computers that have changed our lives and enabled us to create the life we have, and the work we do. We’re just getting ready to go out walking today, checking the tides on my iPhone, grateful that we’re alive to be living in such a technological miracle. So today’s post is a guest post, written this morning by my partner Ronnie Hughes. 

“I know a lot of people are bored, not to say, pissed off with breast cancer. Even this early in October, it can feel like there are no other cancers out there to be concerned and angry about. Somebody said, and it might have been me, ‘Nobody’s putting on pink t-shirts and running round the park for bowel cancer are they?’ It’s like the pink industry hoovers up all the charity, leaving no room for anyone else.

June 2010, Steve Jobs

Well now, one of the most famous men in the world, Steve Jobs, has died of an unfashionable cancer, pancreatic cancer. And suddenly, it seems, October has become ‘Life and Death’ month. And all the media channels are alive with the kind of talk that we, in the post-diagnosis world, take for normal.

Anger, at a life being taken too early, and loss, for what else he may have done. But also people are writing and talking about the things he said. About death, the valuing of every day and the importance of doing what you love. Particularly in his Stanford speech in June 2005. And it’s in this speech, more than anything else he ever said, that we get a view of Steve Jobs that those of us in ‘cancerland’ can clearly recognise.

The fragile state of happiness

 

Ronnie Hughes

This is a guest post from my beloved partner, husband, best friend, soul mate and fellow walker – Ronnie Hughes.

“I know when Sarah is happy. She makes a particular noise, a seemingly random sequence of notes. As Sarah herself has written, ‘Today I catch myself doing that singing thing, the tuneless melody we both call the ‘Sarah symphony’. It’s an expression of happiness and contentment. I don’t miss it when it goes, but I notice it when it comes back.’

This morning as I heard her getting up, the Sarah Symphony almost resembled the theme from 2001, not quite, but I was glad to hear that her day had begun with some moments of happiness.

Glad, because happiness has been hard to come by for Sarah over these last few weeks. It’s been one of those inexplicable ‘down times’, when I once again resume the caring role, that I sometimes think is almost behind me now. But it isn’t, and I begin to notice Sarah sleeping later, getting dressed in the same clothes, if she gets into ‘day’ clothes at all. Listless and disinterested. Spending hours on her chaise longue in some iPhone game. Or in here, the blogosphere, talking to other women with experience of cancer, who tell her this is how it is sometimes, these down days.

Then, last week, Sarah asked me if I’d help her make a ‘schedule’. She said, ‘Something to get me going, give me things to look forward to. Things to get up for.’ At first I resisted, it sounded too ‘driven’. We’ve always been good at getting on with doing things we love, making our differences in the world, and earning our livings almost as a side product of our interests.

But in these days of diminishing treatments and appointments, the strange ‘down time’ of anti-climax after almost four years of drama, that other people have told us about, Sarah was finding that she couldn’t just pick things up in our old way. So, a schedule it was, to help her plan her way out of her gathering depression.

We got out the diary, listed the given things she always does, put in some variety, made sure it wasn’t too full, put in some work, times for blogging and Facebook, social time, walking days, gardening, swimming and made sure there were some times still there for doing absolutely nothing. And, already liking what she had, she bound it all in a little hand made book. Her schedule for the following two weeks.

And six days in, she’s singing again. Because of the schedule and because we’ve done things differently.

Ice cream on the Shining Shore

Been on a walk we’d never done before, discovering a new bit of our beloved Shining Shore on a perfect, sunny Friday. And with ice cream at Parkgate at the end.

Gardening together, well digging actually, on a sunny Tuesday afternoon, not our usual day for allotmenting.

Remembering that one of the great joys of being self-employed is sometimes being able to seize perfect days when they arrive. And we’d started forgetting to do that.

And Sarah’s been running, swimming, doing tai chi, fixing up squash matches, making more marmalade as I’m writing this. As well as blogging with her beloved new friends. And yes, some working too. Being herself, Being Sarah, in fact. A mixture of planned and random happiness, with the help of her new schedule.

She’s also been sleeping deeply and peacefully. I can tell. Letting go of some of the deep tiredness of these last four years.

And singing. The lovely atonal sound that tells me all is well.

So it’s been planned and, yes, it’s no doubt a fragile state of happiness yet. But it’s real nevertheless. And I think it’s helping us to learn from ourselves. Sarah’s book is full of the things she did and we did so that cancer wouldn’t dominate her life completely during the dangerous days of diagnosis and major surgeries and treatments. And what me, the carer, has learned in the last week, is that some moments of happiness still have to be planned, just like then, so that random moments of pure joy, ice cream and the Sarah Symphony can then be encouraged to break out all by themselves.

Maybe it will always be this way? Maybe planning our way out of these ‘down times’ when they come is just how it is for us now?”

 

Green silence

This week I am reminded, again, that I am a breast cancer patient. The doctor’s appointment yesterday. His empathy and understanding. I can hear my words echo in his small office, I don’t really know where they came from. I don’t cry but I can hear a lot of emotion in my voice. His honesty when he tells me that other cancer patients express similar feelings after treatment, about anger and sadness and grief. And that they can last a long time, maybe a year, he says. 

I am drawn back to Audre Lorde’s words in The Cancer Journals. She wrote this book in 1980 after her breast cancer diagnosis and mastectomy. She writes so well about her pain, her loss, and her anger. She has been, and continues to be an enormous inspiration to me. 

‘I have found that battling despair does not mean closing my eyes to the enormity of the tasks of effecting change, nor ignoring the strength and the barbarity of the forces aligned against us.’

I recognise myself in her words. My desire for change, change in how we view breast cancer, serious not trivial; how I want it to be a disease that we prevent.

‘It means for me, knowing that my work is part of a continuum of women’s work, of reclaiming this earth and our power, and knowing that this work did not begin with my birth nor will it end with my death. And it means that within this continuum, my life and my love and my work has particular power and meaning relative to others.
It means trout fishing on the Missisquoi River at dawn and tasting the green silence, and knowing that this beauty too is mine forever.’

I think I want to find myself doing more of whatever my own version of trout fishing is, and tasting green silence.

50 things

Barbara Brenner, of Breast Cancer Action, said, ‘There is no single word to express how breast cancer had changed my life, or to convey my experience of breast cancer.’

No, me neither.

So, I can feel a list coming on:

50 things I want to express about how breast cancer has changed my life.

1 The flat days.

2 The fear.

3 The scars.

4 The aching in my right shoulder, a reminder of all the surgery.

5 The aching in my right armpit, the edge of the flap (the reconstructed breast), telling me it’s there, that I have overdone things, that I am physically tired – I ignore it.

6 The menopausal sweating.

7 I mean like ‘someone’s thrown a bucket of water over my head’ type sweating.

8 The menopausal temperature fluctuations.

9 The disturbed nights, losing sleep, due to menopause.

10 The disturbed nights, losing more sleep, due to worry. Worry about death, recurrence.

11 Generally worrying about things more.

12 Worrying about things less, because it profoundly doesn’t matter.

13 The gnawing anxiety as doctors appointments loom.

14 The sense of ‘what’s that!?’ at the slightest symptom. Is it secondaries?

15 The ‘snuffle’ and sneezing symptom, sometimes in the morning, often after eating food, a mystery to the  doctors but explained by the menopause.

16 The occasional blotchy rash on my face, neck and shoulders. Menopause related.

17 Everything menopause.

18 Opening the diary and seeing two doctors’ and hospital appointments in the same week.

19 The fear of new social situations. (I cannot emphasise how difficult this is for me, I was an extremely  confident person before breast cancer. I had no idea it would be so damaging to my confidence).

20 Loss of confidence.

21 The effort I have to make to do things, sometimes.

22 The joy I can experience, joy in life, joy in nature. Can be exquisite.

23 Fascination in nature. (Did that happen after breast cancer? Or do I just notice more.)

24 I notice more.

25 Being a breast cancer patient.

26 Sitting in cancer clinics.

27 The tightness and tenderness I feel some days in my abdomen, the stretching from the DIEP surgery, 18 months ago, but I still feel it.

28 My silicone nipple starting to peel off around the edge, and being too impatient to clean it and get the nipple glue out of the fridge and then wait for it to dry.

29 The fluff around the silicone nipple. Reminds me it’s not really a nipple.

30 The gobbits of surgical glue after cleaning the nipple, like sticky lumps of snot that turn up in the bathroom.  Thanks for that.

31 That I can’t wear a bra for any length of time, too much surgery, too much scar tissue.

32 The only bras I can find that are comfortable enough are soft cup, or nursing bras.

33 I find wearing a nursing bra post breast cancer a bit depressing sometimes.

34 I miss thin bra straps. Nursing bras don’t have thin straps. They are wide and boring.

35 I find myself still drooling in the window of lingerie shops, sort of hoped I would be back there… but I’m not yet.

36 I have discovered that knitting, a flask of peppermint tea and an iPod can entertain you for many, many hours in hospital waiting rooms.

37 More on the iPod – Tetris is compelling.

38 The joy of blogging. Why didn’t I discover this before?

39 Emerging from treatment and saying ‘What’s Facebook?’ Then discovering that Facebook is a brilliant  communication tool.

40 The kindness of strangers has always touched me.

41 The kindness of strangers surprises me.

42 All seasons are now precious. Because the possibility of not seeing the next spring, or summer, or autumn, or winter, is real.

43 Still being alive.

44 Against statistical possibilities.

45 Not wanting to sound like a moaning misery guts.

46 Wanting to say it’s unfair. And horrible.

47 It is horrible. And that’s why I’m angry.

48 That I think I am bleating about my pain, my experience, and I want a normal life again.

49 I do not want to, and have never wanted to, be normal.

50 I often find. That life after breast cancer is a list of contradictions.