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… an interruption.
But. But I want this surgery, this final (as far as we know), final part of breast reconstruction. I do want it. And when I saw my surgeon, Ken Graham, in the summer we discussed and agreed doing the surgery in November. It's just that I'd expected more than two days' notice.
And we planned it for now because I didn't want the interruption. I wasn't ready. I needed time to recover from the first attempt at this surgery. That was in April. Nipple reconstruction, but done with a local anaesthetic. The surgery that wasn't. I was too distressed.
Of course at the time, Ken Graham was mortified. He is such a good doctor, a kind man, a skilled surgeon, and his patients are his absolute priority. He hates to see them upset in any way.
But there I was sobbing on the operating table and Ken decided to stop before any scalpel incision had been made and I was so upset I couldn't walk back to the ward. So a wheelchair was sent for. The nurse from ward 3A turns up in the corridor outside theatre and finds me chatting with Ken and his team. She gives me a look. I've come to recognise this particular look, it's the one some nurses give you when they see you have a rapport with a doctor or surgeon, when you use their first name. But, you see, this is how I've got through these years of being Patient 475 089 3218. This is how I make my medical experience bearable. In fact, I really enjoy being with both my main doctors, but my over-riding wish in all of this, is that none of this ever happened. That I had the life I had before. That we prevent cancer.
But I digress. Back in the hospital corridor in April 2011 I am seated in the wheelchair, the nurse plonks my notes on my lap, the red file. And I am unceremoniously wheeled along the corridor, into the lift, back along another corridor and back to the bay where my bed is. The nurse leans over my shoulder, retreives the file, and waits, silently, while I stand up, and then sit on the chair next to my bed. Without looking at me she turns the wheelchair round and walks away.
She has not spoken to me. She does not say something sympathetic or reassuring. She does not say, 'Would you like a cup of tea?' Fortunately I am an experienced patient and have brought a flask of tea with me which I retrieve from my locker. Shortly after that my surgical team (without Ken who is with another patient) come and see me, now changed into their day clothes and initially I don't recognise them. The three of them stand in front of me and say sympathetic and apologetic words. I am completely demoralised by the whole experience and can't wait to get home as soon as possible.
