1,736 days

Dream images of Venice kindly supplied by the internet.

OK dear readers, please don’t be alarmed but I am about to write about my dreams, those stories that play out consciously and unconsciously during the night. Because I know that ‘Dream Interpretation’ sounds like something from ‘The Journal of Wishful Thinking’ – but this isn’t like that.

This last week I’ve been to Venice every night. A recurring dream, which is almost the same every night. I am in a mansion, a huge place, in Venice which has an enormous garden that falls away to a canal and a vista across the city. Do they have sloping gardens in Venice? I’ve no idea, I’ve never been there. Anyhow, I’m with a group of people, not people I know, at least not people from my ‘real’ life. And when it’s meal time, I’m doing the cooking. And I have to make a meal for about 20 people, and I have one tin of tomatoes and a loaf of bread. It seems a stretch. Another night we actually go to a shop, a sort of supermarket, where there are lots of tins of tomatoes, but I am on my own and I have no bags and I can’t carry more than two tins. Sigh.

I happen to mention the dream to Ronnie, who says he’s been having a recurring dream too. In his, he is walking up a hill and every time he gets to the top he has to go back down to the bottom to get something he has forgotten. Like a cage with three hamsters. Bizarre.

But they are both difficult situations. We are both alone. We’re in some other place. Like the place we’re in now, called ‘hospital-land’. And this version of hospital-land that has surgery in it, is relentless. Relentlessly boring and difficult, long. The healing and recovery. The weeks of life that are hard, that drag.

Two years ago in 2009 I coined that expression – ‘hospital-land’. Extract from Being Sarah:

So much of my life has been, by necessity, forced, in that I have appointments to attend. Just yesterday, my pre-op appointment at Whiston. Hours of my life in hospital-land.

Last week I am back again in Whiston hospital, at the dressings clinic. It’s a new hospital now, different to the one I wrote about two years ago, and yet it feels exactly the same for me. The undressing, the cubicles, the curtains, a bland vaguely white and green atmosphere, beige vinyl, packets of dressings, silver metal trolleys… it’s all so familiar and yet strange at the same time. I am with Ronnie, as I always am, and yet I feel alone.

Walking out after my appointment, through the new spacious entrance hall. This could be the last time. I’m due to see my surgeon next summer, but at a different hospital. So do I feel glad? No, I feel exactly the same as I felt two years ago. An anti-climax.

Extract from Being Sarah:

I’ve had so many ‘I’m nearly there’ moments in the last three years, that I didn’t really know when the last moment would be. I expected something different. Some kind of ‘Hallelujah!’ moment, an epiphany, that I would wake one morning to a triumphal choral song, angels gathered round my bed singing.

And it’s a bit of an anti-climax, not the celebration I was expecting. Such a long slog, that sort of peters out now.

The same day I leave Whiston I have another medical appointment, in Liverpool that afternoon at the podiatry clinic. It’s another new building, a treatment centre for south Liverpool where many health services are provided. There’s no charge for parking, that’s a first, and it’s a modern clean colour coded building. That colour coding thing they do, the ‘green zone’ or the ‘purple zone’ to help patients navigate their way around. It seems like it’s the current way of doing health buildings.

Anyhow I have my appointment with ‘Tom’ who makes a joke about the women who I saw last time, saying ‘whatever will they do next?’. Implying that only men can be podiatrists. I roll my eyes. I’ve had enough. I don’t have the energy left to challenge him. The chair for the patient – me – is strategically placed as far away from his desk as possible, his computer arranged so that he has to turn his back to me to look at the screen, so he’s mostly not looking at me anyway. And I have a realisation. That all the healthcare systems I encounter are mostly not about me. Not about patients. They are about the systems that staff run. We get to my medical history, because of course, even though I am a seasoned patient, the details of that are not included here, so I say I’ve just had my seventh surgery for breast cancer. And I can hear how bored I sound. ‘So any other health conditions?’ he cheerily asks. ‘No,’ I say, ‘just a little bout of breast cancer.’ I’m being sarcastic. I think he can tell. ‘Well,’ he goes on, ‘something like diabetes could have a more detrimental effect on your foot health than breast cancer.’ I can’t think of anything to say. I wasn’t going for an award for ‘worst health condition for foot health’, actually, I was just trying to stay alive. Won’t be wearing insoles if I’m dead will I?

And this consultation is not bad, I mean I leave the clinic with two pairs of insoles, one for my boots, one for my trainers, to take the pressure off my knees so I don’t get joint pain after running – even though I can’t even think about running, or any other vigorous activity, for at least two or three more weeks because of surgery healing. But. I am subjected to being a patient, to the snide comments about women, to the jibe that I shouldn’t really get two pairs of insoles – because of the cuts he says, even though I don’t say I didn’t have my taxes cut – and the way the door is left open because I am told the room is too hot if it’s closed even with the window open (it’s a brand new building, didn’t they think about that?); so I sit there on the treatment chair with my bare feet while Tom leaves to go and make the insoles, but he doesn’t tell me where he’s going or how long he’ll be so I am just a patient sat alone, staring out the door into a neutral corridor, wondering when I get to go home.

And, I reflect, as I sit there alone, that I am not the patient who walked in today. No. I am the patient I became on 21 February 2007 – the day I was diagnosed with breast cancer – that’s 1,736 days ago. All those days are with me still. My care is not ‘joined-up’, a word I’ve used and tried to explain to my health care providers, about all the times I go from clinic to hospital and back again and no-one knows about the other sitting and waiting and the metal trolleys and the coloured vinyl floors that I tread. Relentlessly. Like trying to make a meal out of a single tin of tomatoes, I suppose. Like endlessly walking up and down the same hills.

So as we walk out of Whiston hospital that morning do I start to think of this as my life after breast cancer? Finished? No. I don’t. I want to, but I don’t. Because – as I have come to realise – there is no ‘after’. The ‘after’ you get post-diagnosis is the only after there is. This one. Now. The present moment. It’s now. That’s it. Living in the now.

And maybe that’s my lesson for life. Now. And maybe that’s enough? Maybe, in fact, that’s better than endlessly waiting for that glad, triumphal feeling of ‘it’s over!’ Because it’s not over, it’s simply now.

And so, if this were a film, then in the end it’s not the kind of film we might once have imagined. As far as we know we’re leaving treatment here for the last time, For now. But there is no swelling music. No punching the air. No turning to each other in tearful triumph. No party waiting back home. Instead, the music cuts and we just keep walking. Hands clenched, hearts clutched. In silence. With the living and the dead, we walk. With you Rach, with you Audre, with you Linda, with you Iris, with you Dusty, with you Phillippa, with you Dina, with you Kathi, with you Nancy. With…, well all of you – you know who you are.

Heads up, we all know the dangers. 1,736 days in, we walk.