Tuesday, 20 March 2012

The sun will come out...

I love variety in a day, when I get to do different things. I had a day like that last week but it also ended up exactly like the weather forecast for the day - starting off sunny, with a bit of cloud coming over, followed by more sunshine.

First thing I went to a breakfast event with ex government communications chief Alistair Campbell and ex local MP Chris Mullen. Perhaps not everyone’s cup of tea and croissant, but I've worked in local and national government and get inexplicably excited about politics, so it was definitely for me. The pair have both written fascinating diaries and are great storytellers. It was also the opportunity to catch up over coffee with friends I haven’t seen for a while who are equally oddly into this kind of thing!

Following that lively start it was then off to a hospital appointment. As part of the treatment for breast cancer, to help prevent a recurrence I was prescribed a tablet called Tamoxifen. I suffered very badly from side effects though so am due to have a hysterectomy – the only alternative option I was given. An empathetic, helpful, amicable gynaecologist helped me come to that decision – and this appointment was once last chance to ask him questions before the operation. This time though Mr S wasn’t available. A young female introduced herself as a member of his team, she may well have told me her name but I can’t recall it. I will call her Ms X.

I am trying to convince myself that I am making a positive choice (I am doing it of course for very good reasons) and trying not to feel as unhappy as I do about having to have another operation (though realistically it’s not the kind of thing I’m ever going to be jumping with joy about).

After Ms X apologised for my 40 minute wait (it’s why it’s called a waiting room of course) she asked me if I had any questions. I thought that I imagined that her eyebrows raised when I said yes then pulled out my notebook. Maybe not.
Here is an abridged version of our conversation.

Me: ‘Mr S said it’s keyhole surgery which I should be able to get over in a couple of weeks, so that’s fine. He did warn that occasionally, once on the operating table, it ends up not being able to be done by keyhole but turns into the old fashioned major op. I don’t want that. I don’t to wake up and find I’ve been cut from one side to the other and will take months rather than weeks to recover. If it can’t be done by keyhole then I don’t want it done.’
Ms X: ‘So if something goes wrong and you might die – and to save your life we have to cut you open, are you saying you don’t want us to do that?’
Me: ‘No what I am saying is I’m prepared and have agreed to have keyhole surgery not anything else if there’s a choice. Obviously if I’m dying on the operating table and you have to do something to save my life I expect you to do it. I would rather not die.’
(I guessed it was going to go downhill from here...)

Me: ‘I was also told I’d be in and out the same day, so again that’s what I’m expecting. Unless of course anything’s gone horribly wrong.’
(Eyebrows were definitely raised at this point, I didn’t imagine it!)
Ms X: ‘Well we do usually keep people in overnight.’
Me: ‘That is not what Mr S said. Unless there is anything wrong I want to be home the same day. Anyway, I’m a rotten patient and you'll want rid of me as soon as possible.’
(My attempt to get some humour into the conversation fell flat.)

Me: ‘I had a really awful time on Tamoxifen, and I’m dreading if I get menopausal effects after this they may make me feel as bad. I know everyone’s different and no one can tell me exactly what will happen – but is there anything I can do to help myself? Are there any supplements or things I can do to relieve or avoid symptoms? The internet is full of all sorts of information, but is there any factual, reliable information or websites you’d recommend I look at?’
(At this point there was a definite sigh that joined the raising eyebrows.)

Ms X ‘We can give you HRT’
Me ‘I had an oestrogen positive cancer, I can’t take HRT.’
(So much for my assumption she’d actually be taking any notice of what’s in my file.)

Ms X ‘Well no, then there isn’t anything. Some people might swear by this or that but there’s nothing I can recommend. You can try whatever you want, if you want to spend money and time on things that haven’t been proven to work.’

At this point I gave up.  I checked that Mr S would be the one doing the operation and signed the consent forms (after suitable warning of all the horrendous things that can happen of course).

Ms X waved me off with a ‘we’ll see you on 4th May then’. My response of ‘Yes but I can’t say I’m looking forward to it,’ made me sound like a negative old bag, which is probably exactly what she thought I was. I left disappointed and dissatisfied.

That sunshine had definitely disappeared behind a big grey cloud.

I am a huge supporter of the NHS. I have worked in it and I have been a patient in it. There are many wonderful things about it and I will always be eternally glad and grateful that it’s there (for the moment… but I won’t get side-tracked into politics!) – but so often it’s down to individuals and who you see, talk to, are treated by has a huge impact on whether you have a good or bad experience. I had just had a consultation with a professional who contradicted the consultant, obviously hadn’t read my file, recommended something not just inappropriate but dangerous, and didn’t seem willing, able or interested in helping me help myself.

But thankfully the day wasn’t over yet. After this I headed to one of my favourite local towns to a talk Stephanie Butland was giving at the library. Steph, who has a book published named after her blog Bah to Cancer, is one of those people who just oozes loveliness and positivity. I perked up as soon as she gave me a welcoming smile. After a good chat, and a cup of tea and biscuit, on my way home I then called into my favourite deli and the day was rounded off with a delicious dinner

So, after the grey middle bit, the day ended bright, light and sunny, as it had started. No matter how cloudy and grey it gets – the sun does always come out again!

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