The N word

November 2011, me in Sefton Park. No nipple protrusion visible.

On the morning of 18 May 2009, a Monday, I am sitting on the edge of my hospital bed, wearing a surgical gown. Mr Koshy, one of the three surgeons who is going to operate on me today, is explaining the procedure before he asks me to sign the consent form. And as this is a DIEP breast reconstruction, the explanation is pretty lengthy. In short it’s the transfer of skin and fat from your abdomen to your chest to create a new breast mound. In reality this takes at least ten hours in theatre and involves complicated connecting of arteries and vessels to make sure the fat stays alive, but also skill in creating a breast mound that matches the other breast. And while he is talking to me Mr Koshy also says, ‘And in time we would like to make you a nipple as well.’

Ah. Yes. A nipple. How great would that be I thought at the time. But it also felt like such a long way off. I mean first I have to get through this surgery, for it to be a success – DIEP surgery can fail completely or partially, all graft surgery carries that risk – and then recover, then I’ll need more surgery on my other breast to match up once the DIEP has settled, and then we could think about a nipple. It all seemed so far away, so remote. And it reminded me of the day I found out I had breast cancer, back in February 2007, when I was told I needed to have a mastectomy, and I said, ‘Can I keep my nipple?’

So my DIEP surgery was a success, a few complications but nothing major. The next surgery six months later was also a success and I was, nearly three years after diagnosis, in possession of two breasts. At least they felt like my breasts to me. The decision to have breast reconstruction was not something I decided lightly by any means, and I was happy with the result and keen to ‘get my life back’, which is where I thought I was at that point. For my reconstructed breast I had a silicone nipple, cast from my other nipple and carefully and skilfully colour-matched by the prosthetics technician, Gina. OK, I hated glueing it on

Bruised

My least favourite version of a hospital gown. Printed with the words 'hospital use only' - that's funny because I thought it would look good as a party dress.

Having been so open about my recent surgery for nipple reconstruction I feel it’s only fair to update you on how it’s all turned out. OK so the administration of my hospital experience was ‘not ideal’ and I’ve written plenty about that (please note just over 7,000 words, and all of them, together with Ronnie’s accompanying blog, sent hard-copy to the hospital – more about their response will follow in another blog post). But surgically this was very straightforward and has gone well. I also have the most wonderful kind and gentle and skilled plastic surgeon – Ken Graham – who I trust completely. And I know he will always do his best for me.

So for ten days after surgery I have a blue foam block covering my new nipple and dressings on the other breast where I’ve had some revision for symmetry. And a four-inch suture line on the inside of my upper thigh which is frankly, very uncomfortable. That was the donor site for the skin which was used to create an areola (which will mean I don’t need any tattoo-ing if the colour works out well). And I don’t mind telling you that having three surgical sites in particularly senstive areas do in fact hurt, I feel delicate and bruised. The effort of bending over to paint my toe nails, the tenderness, the way I am frightened that I will knock myself and hurt. Impossible to sleep on my side, too uncomfortable because of the stitches on both sides. All those things that are familiar post-surgery.

And all this healing time is frankly boring. I don’t get out much, I can’t do anything very active. I sleep long and nap often. I have some visitors who bring me chocolate and cake and we chat. I’ve been to the cinema and also went out for delicious pizza with my friend Karen, but post-surgery is a time for rest and healing.

So as I anxiously look at myself I get to see bits of stitches, dried blood and bruising. That’s what surgery looks like while it’s healing.

‘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.

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.