Today’s guest blog, from guest Editor, Ronnie, picks up on Barbara Ehrenreich’s classic article ‘Welcome to Cancerland’. This one’s about ‘Carerland.’ It’s right next door.
So, it’s Monday evening, this week. Sarah’s just gone out boxing and the phone goes. It’s the hospital, offering Sarah a cancellation slot for her next surgery, this Thursday. ‘Do you think she’ll take it?’ I’m asked. ‘Well, I think she’ll hit the roof, blame me for the short notice, stomp around the house for a few minutes, and then agree it’s probably best to get it done now,’ I tell her. And an hour or so later, this scenario plays out, more or less precisely. Sarah takes the appointment, and immediately begins her blog about it, published on Tuesday.
Tuesday morning for me, I’m out on what’s becoming my regular run. From our house, ten minutes down to Sefton Park, once round the park, twenty minutes or so, then back up to our house – bit more than ten minutes, mostly uphill. Monday morning I’d skipped round this. But Tuesday’s different. In the end, my times are pretty much the same. But there’s a heaviness in my legs and in my heart. Skipping it isn’t. And half way round I realise I’m running through previous preparations for surgery, previous waiting rooms. And it all comes back. Welcome to Carerland.
I’ve written about it just a few weeks ago, in ‘Bored of cancer’, doing my Liverpool-best to make a joke of it. But most of that was done from reflection and memory. Today, I’ve decided, for me as much as for anyone else, to write a live report from inside Carerland. The report will, of necessity be written in bits. Already, 270 words in, I’ve supplied pain killers and brewed another pot of tea, for Sarah, in the next room on her chaise-longue.
But back to me. Wednesday, this week, I’m up well before the crack of dawn, kiss a sleeping Sarah and off into the dark to catch an early train to London. A lovely day, working at the RSA on the beginning of the next HCT Social Enterprise Campions programme. Knowing that during the day Sarah will be doing a few activities that she won’t be able to do during the next few weeks of healing: swimming, sauna, boxing. As well as getting her hospital bag packed for the next morning. I arrive home, early evening to find the activities have duly taken place. But the bag is not packed. And that’s because the whole house has been cleaned. Top to bottom. It’s an essential part of surgery. It always happens. I should have remembered and helped. Oh well. While Sarah goes and packs her bag, pausing to iron a few napkins on the way, I get our evening meal started and sort out the ‘few jazz playlists’ on her iPod that have suddenly become essential. We’re ready.
Next day, it’s another 6 o’clock alarm. Surgery day. I’m up, showered and have eaten most of my cereals and fruit before Sarah comes down. Not wanting to make her feel hungry, as she’s allowed no food, and only a little water, from the previous midnight. As she’ll be having a general anaesthetic. Soon, we hope.
So before eight, we’re at the hospital, as requested, ready for Sarah to be Admitted, Pre-Oped, Consent-Formed and generally Prepared for Surgery. And this is where our stories must diverge. Because I know Sarah wants to tell her own story of this day. Last time I checked she was scorching the pages of her note book. ‘Blog?’ I enquired. ‘I was thinking more ‘Guardian’ article’ she shot back. Oh.
So here we are. Eight o’clock yesterday morning in a still getting going for the day hospital. ‘Could you just go and sit in the day room for a bit?’ Oh, waiting, I remember that, so much waiting. It all comes back. Sarah gets out her iPhone, loses herself in some game. I get out my iPad, reading Steve Jobs’s biography on it, seems appropriate somehow. An hour passes. Little happens for a while. Then brief discussions with a doctor and an anaesthetist. But Sarah’s still in the waiting room, and soon I have to go. I’m working all of that day, remember we only found out about this on Monday evening. Couldn’t just pack two lives away for the week.
So I drive into Liverpool and spend a happy morning talking to a group of tenant activists about Granby, and what we’re all trying to do there at the moment. Mid-day, walking to the next thing, I turn my phone back on to find a sad message from Sarah ‘Still in the waiting room, nothing happening’. We speak about what she might do about this, and we agree I’ll leave my phone on during the next thing I’m doing. So she can stay in touch and I can help, if possible.
The ‘next thing’ is at The Brink, with Gemma Gerome, you met her here on the blog. A group of ten of us, working on ideas for her developing social enterprise, ‘At Home on The Earth’. I explain the position with Sarah and why I’m leaving my phone on. And during an afternoon of Ethics and Environment and Enterprise and Learning and Friendship, keep getting asked for ongoing bulletins of ‘Where’s Sarah up to?’ Well, with agonising slowness and other atrocities she’ll maybe tell you about, she’s moved out of the waiting room, into a bed, and finally, down to the operating theatre, just as we’re finishing, around 5:00 pm.
I drive home for a bit more waiting. And it all comes back. All the other ‘time-hangs-suspended’ hours of ‘Sarah’s having surgery, right now, and I can’t even think of anything else’. Mastectomy day, Oophorectomy day, DIEP day and all the others. I could do with eating, but I can’t think what to eat. I could do some follow ups to today’s and yesterday’s work, but I can’t think of anything to say. I manage a couple of email replies about how Sarah’s doing. But mostly I wait for the phone to go. Knowing Sarah will have asked someone to ring me. The phone doesn’t go. So I start ringing. Mostly no reply, but twice answered, at 6:00 pm and 6:30 pm, ‘Not back yet’. And I know I shouldn’t worry. I know that with Ken Graham, her plastic surgeon, she’s in the safest of safe hands. But I worry like no other worry. Because it’s a worry I can do nothing about. By 7:00 pm’s call, she’s still ‘not back’. ‘I’m coming down’ I say, to the voice on the other end, who’s telling me that ‘visiting time’s nearly over’. I cook and pack Sarah a quick meal (cold grilled salmon mashed in olive oil, potatoes-mayonnaise, cucumber and tomatoes, for detail fans) and by quarter to eight I’m on the ward. And so’s Sarah. Deep relief.
Over the next hour or two it feels like we’re negotiating the terms of her release. No doubt she’ll tell you more. But by 10:00 pm she’s back here, on her chaise-longue. And I’m sending out emails and Facebook messages, as she’s asked me to do. You may well have received one yourself. Then we lose ourselves in a couple of our precious remaining episodes of ‘The West Wing’ (not quite finished yet). And go and have a mildly disturbed night’s sleep. Painkillers and no sleeping on her side for Sarah.
And now it’s today. And as predicted, writing this blog has been a much interrupted experience! We’ve had plenty more pots of tea, lunch too. But also help with hair washing, help with changing dressings, out to the chemist’s for more sterile gauze and steri-strips. And attempting to buy Sarah a new note book. Failed locally with the last, so about to make an emergency trip into town for one, as Sarah’s writing needs today are great.
Oh yes, and yesterday’s surgery was relatively ‘minor’ compared to some of the procedures Sarah’s had over these last nearly five years. And it wasn’t ‘for’ cancer. But it’s still ‘about’ cancer, wouldn’t have had to be done without it. And Sarah’s still a cancer patient. And at times like this, it all comes back for me: all the other waiting and worrying; all the other caring, lovingly and joyously done; and also, the continuing nature of this Carerland.
My Carerland now has people in it who are there for me, who love me. I’ve made sure about this. I never want to be ‘howlingly and achingly alone’ again. But still, this Carerland is an unrecognised place by many. The people and systems who could have taken better care of my lovely Sarah yesterday. The people who didn’t bother ringing me, when they’d told Sarah they would. You know who you are, and if you ever read this I hope it will give you a new perspective. So you will feel more of an empathy for us all, all of us carers who come in, like shadows at the side of your patients. We could be working together on this. Working systematically, so we give the people who most need the care, our loved ones and patients, all the care they need. All you need is love, really.
I’ve got to go out and get Sarah’s notebook now, so in ending can I just reiterate. I support the British National Health Service. I would go to the barricades to defend it. I think of it as one of the highest achievements of the human race. But yesterday, its systems and some of its people let Sarah down in ways she may write much more about. And it let me, a carer, down.
That’s it for now, live from Carerland.