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.

Recognised

Over the last few weeks the questions I have most often been asked are, ‘What will you wear?’ and ‘Have you got your hat?’

Why?

Well, next week, on Tuesday 19 July, I will be attending the Queen’s Garden Party at Buckingham Palace. That’s me and nearly 8,000 other people.

When I received a letter back in January this year I was pretty non-plussed about it, and assumed that the invitation to the Garden Party was some sort of ‘duty’ like jury service. I didn’t realise, at the time, that it is in fact considered an honour to be invited.

The Independent on 22 May 2009 described the Garden Parties as follows:

“An opportunity for the royal family to meet and greet a cross-section of British society and thank them for various good deeds they have done. The emphasis is on rewarding the unsung heroes and heroines of British society rather than the usual crowd of toffs and diplomats who regularly hob-nob with the Establishment.”

Ah, I see, I am being recognised. I like that. I have been heard. That is what I wanted.

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.