Memory Pools

Rachel, in Greenwich village with Sarah, last summer, buying a hat for Buckingham Palace

Ronnie reflects on the places where memories accumulate, as the news comes in about Rachel dying

“All of us who have spent much time in hospital waiting rooms, corridors, wards and consulting rooms, and that probably includes most of the readers of this blog, will be aware of the particular form of ‘waiting’ these places specialise in. Hours of boredom, when you realise what the true meaning of being a ‘patient’ is, sometimes interrupted suddenly and violently with life changing, life threatening news. Those moments when a previously dull, colourless place suddenly goes ‘real’, and the quiet hum of a ‘normal’ cancer clinic turns into shock, thudding heartbeats and, sometimes, the sound of crying. The sound of somebody creating a memory pool.

‘Not ideal.’

I don’t usually write 7,000 word long blog posts. Some things, though, require a lot to be said. This is about the NHS. And me.

Thursday 3 November 2011. My day starts at 6.30am. My days rarely start that early, me not being a morning person. But really my day starts at midnight, the last time I’m allowed to eat or drink before surgery, so we ate late that evening and then I had a chocolate mousse and ended with a drink of water at midnight.

I don’t sleep particularly well. I’ve only had notice of this surgery two days ago. A cancellation, can I make it? Admissions ask me… to them it’s a simple admin procedure, to fill up a booked and staffed operating theatre on Thursday.

To me, it’s not quite that simple.

I generally try to write about patient experience – mine – using my point of view and my understanding of ‘the other side’. Today I’m just going to write about mine.

To me, having surgery in two days’ time is like cancelling my life from that point for several weeks – an unspecified time based on a recovery period estimated to be between two and four weeks.

To me it means that the longing for ‘normal’ and ‘ordinary’ that a cancer patient desires, will be interrupted. This is my fifth year post-diagnosis of breast cancer. Medically that’s good. I’m still alive, well, NED. (No Evidence of Disease, not cured). But it’s only this last summer that I have been able to describe my life as normal. Three years of intense treatment and six lots of surgery, culminating in DIEP breast reconstruction (ten hours in theatre, three months recovery, plus the added complication of an abdominal seroma), and revision six months later, both in 2009. And the following year, 2010, mostly in deep troughs of depression. Normal, apparently, say my medical team. A post trauma response.

This year, 2011, has been better, brighter. Finally I’m back to myself. I’m boxing, running, swimming, playing squash, learning the piano, enjoying new friendships (the better ones, the ones that lasted through cancer or the new post-cancer ones), I’ve spoken at a conference about patient information in the NHS,  I’ve been to New Jersey to visit my new blogging friend Rach, heck I’ve even been to Buckingham Palace in recognition of my advocacy work, speaking out as a patient, and my book was highly commended by the British Medical Association; so I’ve even been into the heart of the medical establishment where they describe my book – Being Sarah – as ‘intelligent and well-written’. Not a bad year all round. But mostly it’s normal and it’s an active life. I’m enjoying it.

But surgery wrenches me and Ronnie out of all that and into hospital, recovery, dressings clinic appointments

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.

All I do and write and speak

30 October 2011, bee in the mahonia on the allotment.

OK, so the blogaday is done and now it’s November and my friends have joked that I can have a rest now. They probably didn’t realise, and nor did I, just how much of a rest I’d be getting as I just had a call from the hospital yesterday evening with an offer for surgery on Thursday morning, following a cancellation. Yes, this week. I mean in less than 48 hours.

But first, I want to thank everyone for the last month. Those of you who read and commented, who’ve thought differently, who’ve started conversations about the issues we raise here in the blog. It’s all starting to change the conversation. And I’d like to thank my guests who’ve added so much to the blog with their voices.

Thanks to Josh Lyman from The West Wing… no OK it was Ronnie really but kicking off with a new slogan. Pink’s not wrong. It’s just not right enough. Ronnie also wrote Being Ronnie 2, a follow up to his post about being a carer. Early in the month Steve Jobs dies, so Ronnie stepped in to write about him. And in a humorous mood he produces a top ten of Bored of cancer. Well, aren’t we all? And he wrote about us in the moving Let us be lovers post. But he also has taken on the role of guest editor with much gusto and I think you’ll all have got to know him better throughout this month and enjoy hearing his voice added to the conversation. He’ll no doubt be filling in while I’m lying around recovering from surgery,

Bored of cancer

Ronnie Hughes

Much of what I write about in my blog is fairly serious stuff. Heavy topics. But that’s because breast cancer is a serious subject, not the pink and fluffy topic that the mass culture would have us think it is.

But today I hope you will get to laugh, because I have another guest post from my partner Ronnie Hughes. And he is funny and cynical, part of his Liverpudlian birth-right he tells me. And yes he does play the ukulele, if you call a repertoire of four reggae songs ‘playing’!

“Yes, it has to be said, four and a half years in, and counting, since Sarah’s Diagnosis Day, I am officially bored of cancer. Breast cancer, to be specific.

Bored? How come? Let me count the ways. The ‘Top 10’ things that bore me the most about breast cancer.

1. Hospitals
An easy first target, I know, but no less boring for that. I can now ‘rate’ them, and not just for the quality of their care and treatments, but for irritating things like: the voice on the car park entry barrier, St Helen’s; which one has the rudest security, St Helen’s again; poorest signage, an easy win for the Royal Liverpool; and what was lost in the transition from the old Whiston to the new one? Who cares? I used to have a life, now I have hospitals.

2.Books
They keep coming, don’t they? Just when I think I’ve read my last breast cancer book, another pops up. Demanding to be read. Or maybe it’s on a cheery, related subject. Like dying or the stress of being a carer. Bored.

3. ‘Is she well?’
If what you meant to ask was ‘Is Sarah still alive?’ Just come right out and say so, will you.

Good enough. For now.

The view while waiting; in the consultation room. 

It’s the time of year when the sun has started to noticeably slip lower in the sky. It shines through the leaves of the trees making alternate golden light and shadows in the car as I drive home from the allotment. The year is turning.

Today I have had my ‘routine’ check with my breast surgeon, Alison Waghorn. A mild anxiety has been with me for most of last week. The usual feeling, even though I have nothing to worry about. But we always have something to worry about; fear of recurrence, even if there are no symptoms. And I go to the hospital with Ronnie, it feels like I have been in this lift a million times. The same waiting room, the file that is mine that is heavy and full. We sit there, and then we sit in the consultation room and wait, reading the notice about the Barium Enema referral procedure for the thousandth time. This room where I have spent so much of my life, or so much of my life where I am in a heightened sense of awareness.

And when Alison Waghorn comes she says she is sorry to have kept me, and she flops down onto a chair and smiles at me. She is the same age as me. We’ve become friendly during the last four and half years. We talk about my book – she liked it, says she likes the honesty in it, that it’s helped her to see things ‘from the other side’. She’s bought copies for her mum to help her understand what she does, and also for her aunt who works in a hospital too. And we chat about my recent trip to Buckingham Palace (she was impressed), and look at the photos, and chat about our latest camping holiday in the Lake District. And then we get down to the medical bit. I will spare you the details of a full breast exam, of the discussions of my reconstruction, the exclamations about my rub-on nipple transfer, how realistic it looks. All is well. For now.

The surgery that wasn’t

Friday 22 April, Thurstaston. Spring is here.

I feel I’m on a long road. I thought I could see the end. But, it’s not over yet.

Last week, on Thursday the 21st April, which is exactly four years and two months to the day since I was diagnosed with breast cancer, I was in hospital for what I hope is my last surgery for breast cancer. My seventh operation. A nipple reconstruction. This will be the third plastic surgery operation, and I am feeling the usual combination of nerves and excitement. Because mostly surgery is about taking things away, but these reconstructive surgeries are about giving me something back. But I am strangely more nervous than any of my other surgeries, because this one is ‘only’ a local anaesthetic. That means I’ll walk into the operating theatre, I’ll see all the staff and the equipment, and I feel nervous about that. But I’ve been pretty low key during the run up to the surgery saying, ‘Well, you know it’s only a local.’

So it’s ‘only’ a local, it’s ‘only’ a nipple, it’s ‘only’ minor surgery. Well, I think I’m coming to realise that nothing is ‘only’ in cancer treatment.

Since I was last there the hospital have moved into a brand new building. It’s clean, modern, the ward is spacious. The windows are open to the lovely spring day and it feels exactly like healthcare should feel. Ronnie leaves me and I sit and wait.

Remembering new year 2008

As we approach new year’s eve, the start of another year, now nearly four years since diagnosis, I was thinking back to other new years – the feeling that I might be on the verge of the ‘end’ of breast cancer, that I was somehow almost done, that my treatment was nearly finished, that it was going to be all over. Hmm. This is new year’s eve 2007, my 37th doctor’s appointment in 11 months….

An extract from Being Sarah:

25 December 2007, end of the first year since diagnosis

New year’s eve 2007. I sit and wait for an hour for my follow-up gynae appointment at the hospital. I am here to see my surgeon about the histology results from my oophorectomy. I eventually get seen by my surgeon’s registrar. I don’t think I have met him before. Well maybe I did see him briefly as he did the rounds before surgery, but he doesn’t act like he’s met me before. He looks at me blankly when I ask for the histology report on my ovaries. He scrabbles in the file and taps at the computer.

‘I don’t have your histology,’ he says.

He then tells me that there is backlog from the lab. I am obviously looking seriously unimpressed at this point.

‘But that’s what I’ve come here for, the histology results,’ I say. 

‘There is a problem with IT.’

It’s been seven weeks since I had surgery and the results have not made it to my file. Of course, because I am lucky, because Alison Waghorn (my breast surgeon) is my real doctor, she has seen the histology and she has told me there is no sign of malignancy. But I want my gynae team to tell me this, to interpret the report. I want the service I am entitled to.

I don’t even know if he realises I had breast cancer, what I’m there for, what I’ve been through the last 11 months. I try to be nice to him, but I’m not getting through here. No, I think he has absolutely no idea what it feels like to get a cancer diagnosis, to lose a breast, to face treatment decisions that are weighted with life and death statistics, and the emotional impact of all that. To have this chemical and surgical menopause. Just what it feels like, I can tell he has no idea. 

He says that if I am still having troublesome menopause symptoms in six months there are drugs they can prescribe, for the hot flushes.

‘Six months?’ I say. I am gobsmacked.

He looks blank. I don’t want to be sick for six months. I am so fed up. I think he can tell. It’s not that I particularly feel ill, it’s just my sleep is interrupted all the time and I am so tired.

He tells me it’s normal to feel tired, it’s part of the menopausal symptoms. Tired. I’m tired of all this, as I end the year with my 37th doctor’s appointment in 11 months. Tired doesn’t describe how completely worn out and exhausted I feel. Mentally and physically. I don’t know what I hoped for today. That these gynae doctors would have some magic solution. I think this is just what happens when you take the ovaries out of a young woman. Well young-ish. I’m sort of starting to get it now. I have to resign myself to feeling like this, to wait for it to pass.

He talks about oestrogen and progesterone for my symptoms if they persist. He just doesn’t realise. I tell him I had hormone positive breast cancer. And I am not a doctor, but I know that you don’t give more hormones to a patient who had hormone positive cancer. The hormones are part of the problem. He looks suitably put down by my comments. 

‘And the bleeding?’ I ask. 

‘Nothing to worry about, but we can do another D&C if it persists.’

He seems relieved when I finally stop asking questions. He smiles limply at me. I have another appointment at the joint breast clinic in five weeks with my gynae surgeon Mr A and Alison – he says I can discuss things with them. I should have just skipped this appointment and waited to see the proper doctors.

Then he tries to be friendly as we leave. 

‘Well, happy new year then.’

I am so nearly about to tell him to piss off, but bite my tongue. He has been so ineffectual. I know better than to fall out with any of my medical team. I don’t know when I might need them again.

I leave the hospital in a bad mood, the sensation I have is of being completely hollow. I am so worn out by all of this. Happy fucking new year.