‘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’.

‘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

Two weeks in: broadening the conversation

Some weeks, chocolate becomes a necessity

Guest editor Ronnie here for the weekly round up during October.

“Another Sunday, and now we’re two weeks into our self-imposed task of publishing a blog-a-day on here. The week began with ‘The ‘M’ word’. This turned out to be one of Sarah’s most popular posts. Metastatic breast cancer has been our main theme this week, and when Sarah was writing this post I said to her, ‘I think for some people that post won’t be about information and opinions. It’ll be news.’ And so it turned out. Being posted on as ‘new terminology’ by ‘Mid-Week Balance’. It also marked the first appearance this week of Sarah’s great friend Rachel, of ‘Cancer Culture Chronicles’, saying ‘there are times many of us feel as though we’re barely surviving’. From here on in, it was really Rach’s week.

Being Ronnie

Me and Ronnie near the summit of Helvellyn, Lake District, July 2011

This post is a guest piece from my partner Ronnie Hughes. Ronnie has written before about why we walk together, and here he shares his experience of being my carer, and how breast cancer affects his life as well as mine. 

“I am in the waiting room staring at the message on my phone. The message Sarah has just sent from the other side of the doors they won’t let me through. The doors of the Rapid Diagnosis clinic. The message says ‘It’s ultrasound next’. It will be another hour before they let me through the doors to care for a terrified Sarah. But with that message, for me, it begins.

And we enter the whirlwind of cancer. The whirlwind so accurately and even thrillingly described by Sarah, in her book, that there’s no need for me to repeat the story here. But I do have things to add. Because two lives are changed on 21st February 2007, Diagnosis Day. And one of them is mine.

Early days, we cling together, shocked and ignorant, staring at Sarah’s mortality. She asks me to help her start documenting this, an instinctive artist even in the middle of the biggest crisis in her life. So the stills camera that was bought for holidays and good things, as well as our work, is cradled in my hands, focussing on Sarah’s bruised breast. And soon enough, on the scar where her breast used to be. Hundreds of photographs, and hours of filmed interviews follow. It helps me, in a way, to feel useful and objective. But it also distances me in that way cameras do, so I wonder, even now, if I’ve yet felt all the grief I’m going to?

Proverbial buses and no stage V

There’s an expression I’ve heard about being run over by a bus…. it’s a light, throw away comment that’s used when two people are saying goodbye, and one of them says, ‘See you tomorrow, unless I get run over by a bus.’ A strange expression.

I recently found myself thinking about the bus, after reading Peter Harvey’s article called ‘After the Treatment Finishes – Then What?’ I’ve read this before, last year, when I did feel I was at some sort of end of treatment, that is the major surgeries, the big treatment decisions that are all behind me. For now. But even when I re-read it, I find it reassuring, hearing again that this time for any cancer patient can be as challenging as any of the other times I’ve faced in the last four years. Because that is certainly true of my experience of the last year.

He writes about the fear cancer patients have after treatment about recurrence. He says that it’s impossible for others to understand what living with this threat is like:

The difference between those living with the threat of cancer returning and those free from it is that you have seen the bus coming and don’t know whether it will stop in time.

In her blog post ‘Over Our Heads’ Chemobabe describes this sense of living with uncertainty as life under the dangling sword. How our ‘sights have been pointed upward’ and we are forced to look at the possibility of the sword entering our lives. Because the sobering reality of breast cancer is that early stage breast cancer, stage I, even after treatment, can and does return as late stage breast cancer, or stage IV. There is no stage V. Uneasy Pink has written very clearly about the stages of cancer in her post ‘Statistics’, highlighting how staging is linked to your survival chances – which is just another way of saying how long you might stay alive for. Might.

It’s obvious from the comments to Uneasy Pink’s post that there are women out there who feel deeply connected with others, whatever stage they are at. And yet I’ve heard Stage IV women tell me that they’ve been shunned at support groups. They’re the future no-one wants to have. They’re the worst case scenario, the nightmare walking in the door. Too much pressure to hear ‘survivor’ and number of years beyond diagnosis, to give ‘hope’ to the newly diagnosed. Anna Rachnel writes about this so eloquently:

Living with metastatic breast cancer is a strange and lonely place to be.  Because now there are no real milestones, except the one that no one wants to talk about.

And, depending where you get your statistics from, 25% to 30% of women diagnosed with early stage breast cancer will develop metastatic cancer at some point. And then the survival rates become very dismal. Unless the proverbial bus doesn’t run us over first. Sobering? Very. And the fact is that cancer research is skewed towards early stage breast cancer. The Cancer Culture Chronicles recent post highlights the fact that 2% of the US cancer research funds are allocated to stage IV cancer. Despite the fact that it causes 90% of cancer deaths.

It just feels wrong, that’s all.