End of life

Ronnie reviews a book on a subject all of us with a cancer diagnosis have most likely thought about.

“Death, to paraphrase Steve Jobs, may very well be what makes life so valuable, may well be ‘life’s change agent’. But we still don’t like to talk about it.

It’s a few of months back. Sarah, Fiona Shaw and I are all at the magnificent British Medical Association building in London (Designed by Edwin Lutyens, no less). The formal part of the event is over, Sarah has her ‘Highly Commended’ status for her book, and now it’s drinks and mingling in the crowded hall. But I notice a couple of women there with a large space around them. I remember them winning a special award for their book and go over to congratulate them, wondering why other people aren’t doing the same. ‘This is always happening to us,’ they laughingly explain, when I get to them. ‘People, even the medical people this room is full of, are terrified of our specialist subject. They can barely even say the word. The word Death.’

The two women are Mary Jordan and Judy Carole Kauffmann,  authors of the book ‘End of Life – the essential guide to caring’. Sarah and I have both read the book now, and both think it’s well worth recommending. Here’s why:

‘The strong, silent type’

Tony Soprano getting 'in touch with his feelings'

Today’s post comes from my partner Ronnie, about his experiences with counselling.

So, it’s Episode 1 of heart-warming family drama ‘The Sopranos’. And Tony Soprano is distinctly and dangerously out of his comfort zone. He’s been suffering from anxiety attacks during his day job as a Murdering Sociopath, and so his doctor has sent him to see a therapist. And said therapist, Dr Jennifer Melfi, is encountering some resistance, from Tony, to therapy, ‘as a concept’, as you’ll see in this film;

Jennifer Melfi, listening hard

‘Let me tell you something. Nowadays, everybody’s got to go to shrinks and counsellors, and go on Sally Jessy Raphael and talk about their problems. Whatever happened to Gary Cooper? The strong, silent type? That was an American. He wasn’t in touch with his feelings. He just did what he had to do. See what they didn’t know was, once they got Gary Cooper ‘in touch with his feelings’, they wouldn’t be able to shut him up! And then it’s disfunction this and disfunction that…!’

Well, though my work and my life bear very little resemblance to Tony Soprano’s, I do resemble him in one way. I am a strong, silent type. And as I’ve said before on here, for the first three years of Sarah’s breast cancer and treatment, I stuck my head down and, like Gary Cooper, I did what I had to do. Well, here, I want to write a bit more about the damage that did me. And the good counselling is doing me. Because, if you’re still reading, whether you’re the person with the diagnosis or their carer, I think it might be good for you too.

Beginning with now. A few weeks back, Jo, my counsellor asked whether I wanted to stop now?

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’.

The Journal of Wishful Thinking

The greatest scientific book ever written

Today we have a guest post co-authored by two very well respected writers from the scientific, evidence-based end of breast cancer research. Ronaldo Hugo, editor of ‘The Journal of Wishful Thinking’ is joined here by hard hitting social commentator, Dandelion, who you first met here with Rachel, on Cancer Culture Chronicles and have of course met with us in ‘The Alternative Orthodoxy’.

After a breast cancer diagnosis, an early casualty in many people’s decisions about ‘what to do next?’ is, of course The Truth. In the desperate search for ‘why me?’ and ‘what now?’ many will believe any piece of half-baked, poppycock drivel, served up by well-meaning friends as ‘reliable advice’. And that’s why we set up ‘The Journal of Wishful Thinking’ nearly 30 years ago now. To build up a solid body of scientifically based thinking on what can and has worked, out there in the real world, where our grateful readers, such as my co-author, Dandelion live.

In all the years of publishing ‘The Journal’ (as we affectionately call it) every single piece of information and advice published has been verified as ‘quite possible’ or even ‘fairly likely’ by at least two readers, who are not both in the same room when we ask them what they think. We called this unique method ‘double-blind testing’ and of course it has since been widely adopted as the ‘gold standard’ by the entire pharmaceutical community. Kudos to us there, I’m sure you’ll agree!

So, fast-forward to now and Being Sarah asks for this contribution to her blog. And at first, I don’t mind telling you, dear readers, I was surprised. I had heard of the blog, of course. Who hasn’t? But what I’d heard did not encourage me to want to contribute.

‘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

Being Sarah: Where next?

Today’s post sees the return of Fiona Shaw of - Wordscapes, publisher of ‘Being Sarah’. You last met her earlier this month, when she wrote ‘I just didn’t know’. And in fact, it was Fiona who gave me the idea of doing a blog each day during October. A mighty task which she is here, helping me to complete! Thanks Fiona.

Well, that’s my introduction. Fiona, being a ‘proper’ publisher and editor, has written her own! Here we go:

Being Sarah has taken on a life of its own – and certainly not one I imagined when I first met Sarah in February 2010. It has been 18 months of achievements and awards, campaigns and challenges. Work has blurred into life and clients into friends; questions have been asked – some answered – and perceptions, perspectives and priorities changed. Fiona Shaw takes a look back at what’s happened, and what happens next…

October 2011 – my second Breast Cancer Awareness Month, ‘working’. It has been a whirl of a year, packed with achievements; the book – my first Print on Demand book; a website; the launch; a social media campaign; awards and invitations too – to Buckingham Palace, to the BMA’s Book Awards; Sarah speaking at the European Parliament, across the country here, and being invited to speak at an event in the States.

Since the launch she’s been interviewed on Woman’s Hour and Radio 5 Live, by national papers including the Daily Mail and Telegraph; she’s made films and impassioned speeches in public. She’s made an impact, which goes far beyond just getting people to sit down and read a book.

I will always be tremendously proud of ‘Being Sarah’. If you haven’t yet, please read it

A Universal Declaration of Human Might

At Home on the Earth, Gemma Jerome

Today’s post is written by a relatively new friend, Gemma Jerome. Gemma is an environmentalist, an academic, a social entrepreneur, a gardener, a walker in the hills, a bicycle repairer and so much more. I gave Gemma the vaguest of briefs, to write me ‘something around the environment and breast cancer prevention’. And what I got was this magnificent polemic. We said we’d be getting more political this week. Because people are reading these blogs, and following the links to the information and science, and asking ‘What can we do?’ Well read this. Then let’s decide where we take it next. 

“Here I am in the Yorkshire Dales, heading in to Malham Cove. Through this great tumble of debris of a bygone age, we felt like intrepid explorers setting out on a journey of discovery. Our feet, nimble on the paths of our towns and cities, now stumbled on the rocks unpredictably placed beneath us. I had an overwhelming feeling of how small I was in this landscape, and above all, how beautiful things are when you just let them be.

The landscapes within me: As director of my own social enterprise, At Home on the Earth, I have had the pleasure of working with Sarah and Ronnie. Thanks to  their unique approach to values-led business planning, I was able to locate my business ethically and emotionally. In this way Sarah and Ronnie stood with me at the top of the hill and side by side we read the moral compass. Through reflection we are able to set off in a new direction, or even the same direction but with a renewed sense of purpose. This is what they mean by ‘a sense of place’.

I now know I am emotionally driven by the possibilities of how we could live differently

Three weeks in: Open your eyes

What we make makes us, the allotment harvest

It’s guest editor Ronnie again, for another weekly round up.

Well, we’re getting kind of used to this now. I get up and post the day’s blog, then Tweet and Facebook it. Before we go about whatever the business of that day might be. Then, by the afternoon of each day, we’re thinking about tomorrow’s blog. By the evening, final editing or writing if it needs any. At the same time watching that day’s and other recent blogs, responding to comments and watching how the conversations and statistics are going. And having a life. I mean, Sarah did have a rough plan for what was going where and who was writing what, at the beginning of the month. But we’re only vaguely guided by that now, as we respond to real life and the conversations the posts are helping to create.

This week began with something surprising, a photo of Sarah boxing. ‘I am ready’ finds her in a Boxing Club working up the courage to get into the ring for the first time, and then taking real pleasure in something she never even thought she’d want to do. Then boxing being added to the range of physical activities that ‘help me not get depressed…and help reduce my risk of recurrence of breast cancer’.

Tuesday morning found me boxing in the same club, also for the first time. And also doing a risky guest post, of jokes about breast cancer. ‘This one’ll either fly or fail’. I said as I Tweeted about ‘Bored of cancer’ Fortunately, several people with even more experience of the kinds of hospitals and waiting rooms I’m so bored of, thought it was funny. ‘Ha! Wait till you get to 11 years and counting’, said Julie Short.

Tuesday evening, we did a gig, ‘Women at The Brink’

Remembering Iris

Iris Berg

Today’s post is written by a friend of ours, Hilary Berg. Hilary’s mother died of breast cancer on 22 October 1994, 17 years ago today. I first met Hilary after she’d read Being Sarah, and she was completely bowled over by it and I delighted in her praise. She went on to tell me some of her mother’s story and I could see it was incredibly painful for her. So when I asked her to write for my blog I wasn’t sure if she would want to. But I’m really glad she has and this is a very moving and emotional piece. I cried when I read this. And I don’t mean my eyes filled with tears, I mean my face was streaming with hot, burning tears of anger as I read about the shoddy medical treatment Iris received, and another life ‘cancelled by breast cancer.’

Hilary Berg, daughter of Iris

I have to admit that when I was diagnosed in 2007, one of my initial reactions was feeling worried about the level of care I might be about to receive on the NHS. All my previous encounters for minor medical conditions were really mostly very average and consistently patronising. However, my care from 2007 onwards was excellent, not always, but the majority of my medical care has been given with dignity and respect for the patient; and I do know that it has not always been the case in the NHS. But I now know that in the late 1990s health advocates caused a shift in how the NHS treated patients, and the ‘patient experience’ has become core to how the NHS deliver their services. Not always perfect I know, but certainly improved from the time that Iris received her treatment. 

In my head I carry the names of women who have died from breast cancer, and sometimes I recite them and I remember why I do all this. Why I still write, why I still get angry, why I still talk about breast cancer. Because I want things to change. That’s why. 

So, get a tissue ready, and please read this beautiful tribute to a wonderful woman. Iris. Thank you Hilary.

“Seventeen years ago today I found myself holding a worn pair of spectacles in my hand, with smudged fingerprints and flecks of compost on the lenses. I found them on the table in the greenhouse just after the funeral director’s men had left, taking our mum, Iris with them.

And there I was, silently holding on to her gardening glasses – cocooned in the warmth of the greenhouse – surrounded by her trays and pots,  balls of string, gardening gloves, scribbled lists on scraps of paper.  Completely unable to grasp the fact that this full, warm, joyful life had, quite suddenly, been cancelled by breast cancer.

The greenhouse was always one of her favourite places.

I just didn’t know…

Fiona Shaw at the BMA Medical Book Awards in September 2011

 ”I was 34; I knew people who’d had breast cancer – some who’d died. Some who’d lived. I read about it – hell, I’d even done a Run for Life. Turns out I didn’t have a clue. Working on ‘Being Sarah’ changed my life.”

says Fiona Shaw, editor and publisher of ‘Being Sarah’.

“But the messages surrounding breast cancer are so complex and contradictory I just don’t know what to do about it…”

Today’s post is by Fiona Shaw who runs her own publishing company – Wordscapes. Since working together on the book Fiona’s become our friend and she often turns up in my posts, you know doing stuff like going to Buckingham Palace and swanky book awards in London. She’s a super-smart fun person, her zest for life is infectious and I love the time we spend together. She can also spell better than anyone I know. And yup, she’s even done a Race for Life!

This is Fiona’s post:

“And so October heralds Breast Cancer Awareness Month (BCAM), and – this year – a Being Sarah blog every day. Each and every one of which, I hope, will inform, challenge or add something to breast cancer awareness – in its widest sense. Because I can honestly say that, before I started work on Being Sarah, I didn’t have a clue about breast cancer, and the issues, debates and controversies surrounding it. They are, I guess, out there. If you’re looking. But they’re just not questions and debates that are covered by the mainstream media. If I now know just a fraction of the things I didn’t know before, then it’s down to Being Sarah.