It all comes back

November 2007, picking Sarah up from hospital after her oopherectomy

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.

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36 thoughts on “It all comes back

  1. Wow. Just wow. I never would have made it all day having been NPO from midnight on the night before. Kudos to you and Sarah for the long, long road you’ve traveled, and thanks for sharing.

  2. I read it all and grunted “humph” at the end. So true about the let downs in communication. But isn’t that so true of many ‘institutions’! You write true and well Ronnie, it’s good to read and relate back to. A good insight for the patient and their medical teams to reference. Keep it going – I feel that you may make a difference.bmuch love to you and Sarah.

  3. Ronnie – it’s so incredibly enlightening for me to read your posts about what you go through as the carer. I’m ashamed to say that otherwise I don’t think much about what my own Beloved goes through with me on a daily basis. I’m always so wrapped up in my own struggles that I forget to think about his. Thank you for reminding me to be a better patient, and a receiver of loving care. Love to you both. xxxx

  4. I am glad Sarah is home and I am glad to read this and hear of your constancy in a friend I have yet to meet’s journey through medicine, bureaucracy and life/love/pursuit of happiness in general.

    And ugh. UGH to that long of a day, that long without food, that long of a wait, the calls that didn’t come, to all of it. UGH.

    I am glad you are getting Sarah a notebook. I am….well, looking forward isn’t necessarily the phrase…but wanting to know what happened.

  5. Ronnie,
    I am learning so much about the feelings of the carer from your posts. You should really consider writing a book of your own. Or perhaps a blog specific to it?? Or just keep writing here, that works too! Like Rachel said, your posts make me appreciate my hubby more. I know this cancer thing is a partnership for us too. I really liked your line about this surgery not being for cancer, but about cancer. Boy do I get that!

    Sorry your experience with the NHS didn’t go entirely smoothly. So glad Sarah’s home and that you are there for her once again. take care of yourself too, Ronnie! Great post!

    • Thanks for the compliments, Nancy. For now we’re really enjoying doing this together. Think it’s a full picture, complementary. And it also helps me, on days like these, with the potential for loneliness, to have you there for me xx

  6. Ronnie, having heard a few more of the details of the waiting that Sarah did at the hospital, I’m still appalled. I think my first inclination would be to write to the Guardian, too.

    Sigh. As a clinician AND a cancer patient, and having therefore one foot in each camp, so to speak, I really empathize with both of you. The helplessness of watching someone you care for and about, being treated with unnecessary shabbiness by thoughtless healthcare staff, the helplessness and acute frustration of being the one on the receiving end of such nonsense — I don’t know which is worse sometimes. But I’m just glad you two have each other.

    Massive hugs to you both.

    xxoo

  7. In respect to Ronnie’s subliminal and sublime use of beatles lyrics, I’d like to share some thoughts…

    Imagine.

    Imagine a world where the people who elect themselves to be in the lion’s den of dis-ease, the front line of ill health, and the coal face of medical ‘exploration’, are actually cared for, cared for and cared about so much, that they never forget to care about you.
    Because that’s where it starts. We are all so entwined in each other’s lives that it’s difficult to separate out your pain from mine. This is the beauty of family, and the family of families, culture.

    And yet, the frank words of both Ronnie and Sarah are testament to the rude reality of uncompassionate carers; those people we look to to offer us even a flavour of kindness, an aroma of home when we feel farthest away from that place of comfort and rest and security.
    My belief in the kind-hearted side of human nature compels me to show compassion and understanding for those who fail us in our darkest hours; and yet my rational mind is quick to swoop in with an arresting critique:

    “Idealistic and naively ambitious in the beginning, tired and hindered by a structure they feel intrinsically loyal to now. Trapped in a system that no longer gives them love, they have no love to give. Poorly performing within a structure that allows such performance to go unnoticed, unchecked or forgiven in light of current financial and bureaucratic pressure, the book gets passed. And those at the bottom of the NHS food chain go hungry.

    For us at home, the carers and friends, it is easy to create a homogenous adversary in the health system and yet if we look more closely, with intent, there are many layers of unhinged responsibility and shirked advocacy. It’s much more complicated than ‘Them & Us’; this time the universal dichotomy of war just doesn’t cut the mustard. Changes are being made in the NHS, on our behalf.”

    If Being Sarah has taught me anything, it’s that if we want change, we have to see ourselves as intrinsically part of the story. The story of change is a long, historical theatre piece, and we’re all protagonists on the stage. Everybody’s watching, and there’s no script.

    “What’s your line again?”

    • Hi Gemma, I agree that we do need to move beyond military metaphors and general polarity thinking. Talk of ‘fighting’ situations or disease implies and brings about a state of war. and in telling our current story, there is no implication that we are ‘fighting’ our NHS. Sarah and I are part of it, and she might well not be here without it. But on Thursday we fully felt the systematic lack of empathy you describe ‘at the bottom of the NHS food chain’.
      It’s distressing and confusing, so all we can do is tell our stories honestly and quickly, as we are doing. And attempt to engage in friendly and systematic change with the well-meaning, receptive people there actually are within the NHS system. Sarah began that yesterday.
      Beatles lyric to finish? Well, John Lennon, actually ‘How can I go forward when I don’t know which way I’m facing?’

  8. I’ve just started following @Being_Sarah on Twitter and only now have the opportunity to read some of your blog…thank you for this description of your experience as a care-giver..almost a ptsd experience…we’re watching, advocating, caring, loving Thank you.

  9. Thanks Ronnie. Thanks for sharing your perspective; for reminding us how tough it is in oncology land; for updating us and letting us know how Sarah is doing; for giving us a sneak preview of what promises to be a very strong insight from Sarah about her experience. But most of all, thank you for “being there” for Sarah. Love and many notebooks to you both xx

    • Thank you Karen x
      Today has been a bit more difficult for Sarah. I think the effects of the general anaesthetic have fully worn off. So the 3 areas of surgery have been more painful. She’s stayed in bed all day, and is sleeping now. But about to be woken up by fireworks, I think!

  10. What a great post. I have so many carers in my life, it’s hard to fathom. Sorry that Sarah is having a hard time recovering. She is so dearly loved. And I agree, sleep is a good thing.
    J

    • Think she’s slept enough! Woke up this morning and she wasn’t beside me, to my alarm. Came downstairs to find she’s already been up for two hours. Reading, writing and generally preparing her own account of this week’s misadventure in our NHS.

  11. Hats off to you both. I get so upset with the way people get shuffled around in some hospitals. There is no excuse for lack of compassion to any patient or carer. i worked in the field for 30 years and have seen such changes and not always good ones. Thank God for our caregivers at home and the special true friends we meet along the way. Love to you both. Gail from Pa.
    you are both wonderful writers and are truly appreciated for what you do, say and believe!!!

  12. … what can we say… the thing is… how do we put it right? Ronnie, so gut-wrenchingly honest as always – brings back morose memories of our own experiences within the system. Keep telling it how it is – if enough of us do this, who knows we might see some changes… much love to you both xxx

  13. Just wanted to say thank you thank you and thank you everyone for engaging in this discussion. My energy is elsewhere – three surgical sites to heal, plus an enormous rage about the injustice of this day, and I’ve been writing about it.
    I’m so glad we all found each other. It feels so right.
    Best, Sarah

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