Tuesday 23 March 2010

My way.

The no-kids clause isn’t something I wanted to write about again, given that me and P are so over it that it’s almost a non-issue. But something that happened at the hospital last week has had the pair of us thinking about it again – not in terms of the way we’ve chosen to handle it, but the way in which others do.

First, then, I’d better clear up the stuff in the background, point one of which is last week’s appointment with (old-time blog favourite) The Curly Professor – who, until Friday, I hadn’t seen since my diagnosis. (And whether it’s relevant to you or not, I feel compelled to reveal that, in the waiting room prior to our appointment, P and I were flicking through the hospital magazine, only to discover that The Curly Professor has won an international award for pioneering breast-cancer research. Just sayin’.)

‘Lovely to see you again!’ he said, extending his hand for us to shake. ‘And good that it’s under rather different circumstances this time, eh?’
‘Hell yeah,’ I concurred.
He took a seat on the treatment bed, legs crossed casually and back leaning against the wall, as he introduced us to the visiting junior assistant (and for those of you who’ve been here a while – yes, another glamorous one) who, if it was okay with us, would be observing our appointment. The Curly Professor, I’ve come to realise, always has a glamorous assistant. Much like a magician. (And for my next trick, I will make this tumour disappear!) And so The Lovely Debbie McGee sat on a chair beside him, smiled and, well, observed.

‘So, let me have a look at you, then,’ he said, washing his hands as I whipped off my dress. (I’ve never asked him, but I imagine this part never gets any less surreal for P.) I lay back on the bed, wishing I’d worn different leggings than the ones with a hole in the waistband.
‘Right then,’ said TCP, clapping his hands together as he approached me from the other side of the room. ‘And which one is it?’
HA! WHICH ONE IS IT! He couldn’t tell! ‘Smiley Surgeon’s going to LOVE this,’ I thought. The Curly Professor clearly read my mind.
‘Remind me who did your surgery?’ he asked, leaning closer as he examined me.
Thankfully my professor’s real name – and not the blog name I’ve given him – left my mouth.
‘And when are you seeing him next?’
‘Well do send him my regards,’ he said, moving from my fake to my real tit. ‘And you tell him from me that this is really excellent work.’
‘Mm,’ I hummed, filled with pride on his behalf. ‘It is quite amazing, isn’t it?’ I don’t think I’d realised until that point just how much I’ve come to love my new tit. In fact, I love it so much that I think I’m going to write just that inside the cover of the book I’ll be giving Smiley Surgeon this afternoon. (Perhaps I’ll also wrap it up in police-caution tape: WARNING: SUCK-UP ALERT!)

The rest of the appointment was filled with statistics and home-truths and new terminology and recommendations, so I’ll save you a further 40 minutes’ worth of dialogue and just give you the headlines instead.

It turns out that, thanks to my hibernating ovaries, I have the beginnings of osteoporosis. So I need to go on a new weekly drug to ensure dem bones don’t get any worse.
Now that we know about The Bullshit Gene, I’m back under the hospital microscope, and will be checked roughly every six weeks. I can’t tell you what an enormous reassurance that is.
The solution to The Gene Problem isn’t going to be a quick-fix, but more of a long-term project that sees us through the next two to three years.
As I’d expected, The Curly Professor recommended another mastectomy. Having it done would significantly reduce my now-heightened risk of having to put up my fists for another round with The Bullshit. So long, right tit.
Before that can be done, however, we’ve got to carefully investigate what’s going on beneath my pesky puppies at the moment as – now we know that I’m carrying the BRCA-2 gene – the most immediate risk right now is a recurrence of cancer in the little tissue that’s left in my left breast. So, next step: breast MRI, then another mammogram.
Of course, we’ve got to prepare for there being a residual problem, but for now let’s assume there’s nothing to worry about. In which case, we’ll plan to have the mastectomy done within eight months to a year.
After much discussion about mine and P’s insistence that we’d NEVER (yes, in capital letters) be prepared to take the risk of trying to get pregnant (given that pregnancy = oestrogen and oestrogen = potential kryptonite), The Curly Professor also suggested an oophorectomy – but not yet. That’s something that will come much later – probably not even for another 18 months – but that would undoubtedly help matters, what with BRCA-2 being responsible for oestrogen-receptive cancers in both the breasts and the ovaries.

Which brings me back – albeit in the least cohesive way possible – to my original point, and how other people respond to mine and P’s handling of the no-kids issue.
‘Obviously an oophorectomy is non-reversible…’ said The Curly Professor.
‘We know that,’ I nodded, in tandem with my husband.
‘And you are absolutely certain that you’d never want to attempt to get pregnant?’
‘Absolutely. We’re definitely not doing it. Definitely not,’ I insisted. P kept nodding.
‘Right,’ he said, in that gloriously non-judgmental way that I adore about top medical professionals.
‘Besides, I’m almost certainly menopausal so it’s doubtless off the cards anyway,’ I added.
‘Ah, of course, yes.’
‘I must say, it’s unusual that you’re so adamant,’ he said. ‘Most women aren’t so sure.’
‘I’m not most women,’ I asserted.
‘I can see that,’ he said with a smile. ‘You know, you really are dealing with all of this incredibly well. And after everything that’s been thrown at you...’
‘Well, you just get on with it, don’t you?’ (That’s my stock answer whenever anyone tells me how well I’m handling things.)
‘I suppose you do,’ he said. ‘And so, then, I’d have a think about having the oophorectomy. But there’s no rush to decide, obviously. Don’t you agree?’ he asked of The Lovely Debbie McGee.
‘Well, no, actually,’ she said, to which the three of us blinked in surprise. ‘I wouldn’t recommend that in someone so young.’
‘Oh, why?’ asked TCP.
‘The thing is,’ she said, fixing her gaze on him in the way that your mum would whenever she wanted your dad’s backup on a telling-off, ‘Things change.’ She continued to give him that look, tilting her head down slightly and looking upwards at him with raised eyebrows.
‘Erm, I am here, you know,’ I thought, before piping up. ‘I do know what you mean by that,’ I snapped, ‘but I’m telling you THAT WILL NOT CHANGE.’
‘Absolutely not,’ concurred P. ‘No way.’
‘Well, I’m just saying,’ she said.
‘And so am I,’ I said, reddening as I spoke. ‘THAT WILL NOT CHANGE.’

‘That pissed me off,’ said P later, as we hung around waiting for test results. ‘She wasn’t looking at that from the perspective of a doctor; she was looking at it from the perspective of a woman.’
‘Precisely,’ I said.
‘It’s almost irresponsible,’ he said.
‘Not really, love,’ I conceded. ‘She can’t help seeing it that way. But it does make you realise just how amazing The Curly Professor is. He responds to us as us; not just as faceless patients. And he doesn’t just take into account what’s written in my file, but how we each react to all of this. It’s one hell of a skill.’

After I’d silenced The Lovely Debbie McGee, me, P and The Curly Professor talked a bit about that. TCP called it ‘personalised medicine.’ I call it damn good practice. Now, I don’t know how it works at medical school, but surely learning to respond to your patients in the way they will most appreciate is something that can’t be taught. Nor is it a thing they can ask you outright. (‘Okay, Mrs Lynch, so would you rather I took the no-shit approach today, or the tilted-head approach. Entirely your call.’)

And so when P and I thumped down our feet on the pregnancy issue, TCP didn’t raise an eyebrow at our decision. He just responded to it in the manner we’ve come to value so greatly: by giving us the facts. And – if you’ll allow me to state my case once and for all – for me and P, the facts are thus. Wholly aside from the fact that my almost-certain early-menopause has put paid to the idea of having children naturally anyway, even if it hadn’t we would still under no circumstances be prepared to run the risk of more oestrogen than is necessary entering my system by doing whatever it took to get pregnant. And yes, I know that no medical professional would ever say that the oestrogen from pregnancy might automatically spawn cancer cells, or even that the two failed pregnancies that P and I had prior to The Bullshit were responsible for the size and spread of my tumour. But – and here’s the clincher – we can’t ever say with 100% certainty that it didn’t exacerbate the problem. I also know that, for a lot of women, that wouldn’t be enough to put them off the idea of conceiving. (‘You can’t have kids’ and ‘having kids could be dangerous to you’ are, of course, entirely different issues.) But, like I said to The Curly Professor, I’m not most women. And so for this woman – and, it’s important to add, for her husband too – even if the risk of reawakening The Bullshit by getting pregnant is as tiny as 0.5% (0.5% with a question mark after it, even) it remains very much a no-go. It’s like my Mum said recently: ‘We don’t want anyone new – we just want you.’

It’s one helluva grey-area issue, granted. But, much like everyone has their own way of dealing with The Bullshit itself, this is our way of dealing with a Bullshit side-effect. And we’re unapologetic about that. We don’t need anyone to give us their opinion, nor do we need anyone to pass judgment or tell us how they’d do things differently. We just need people to accept the facts as we see them, and move on. Which is why we left our appointment with The Curly Professor feeling at ease, reassured and prepared for the Bullshit-Gene-battling road ahead, safe in the knowledge that we’ve got the Harry Houdini of oncology on our side.


Kirses said...

Your Mum's words on the subject are lovely!

Helen said...

You are so amazingly strong. The way you're dealing with everything literally astounds me. Lady, you rock. xx

lilianavonk said...

I am sooo ready to smack The Lovely Debbie McGee upside the head about now. Evidently she hasn't gotten the memo about how basic professionalism includes actually listening to patients and not using your own biases as any sort of basis in fact.

She showed absolutely zero respect for the difficult journey you've taken to arrive at these conclusions, and thus I feel she should be kicked hard (and often) about the face and neck, at least until she recognises that there is no blanket consensus regarding maternity.

Major kudos 'n hugs to The Curly Professor, though, for recognising what a rara avis Our Lis is...along with your mum, and of course to you and P, like always. ♥

jane__w said...

Just wanted to say that you and P sound like a truly awesome team. I'm sure you know that, but y'know.

Anonymous said...

Lisa, fabulous blog as ever.

You do what's right for you and P. You shouldn't have to justify your decisions to anyone.

I too thought your Mum's words were lovely but then Mums are always right.

I also agree that The Lovely Debbie McGee hasn't taken into account the difficult journey taken to arrive at this decision. Unfortunately I think she might be the first of many who will react like that but I think lilianavonk suggestion to kick her hard (and often) around the face might be taking it a step too far. Silencing her with words was far more powerful.

Loving your words and so looking forward to the book.


Anonymous said...

I'm guessing thats why she is an assistant ... albeit one who is clearly very lucky to be working with the great Curly Prof. I think its hard to be a medical professional in these situations as their screw ups are so much more far reaching. Thank goodness you are so much further down the line that you did have the confidence to bat her off.
Wishing you lots of strength on your new road xxx

Anonymous said...

Posts like these are why I'm so so looking forward to April 15th :-) Great post, as usual.

Anonymous said...

You're all quite hard on the medical student.(the commenters) She'll grow up! One day she might be a good doctor. In the meantime, you know your own mind and have confidence in your decision. Very best wishes to you.

Anonymous said...

Another fabulously written post! Looking forward to the book. Your mum's comment made me cry xx

Mike said...



Your blog has been recommended to us as a interviewee's favorite blog!

We would like to do an interview with you about your blog for
Blog Interviewer. We'd
like to give you the opportunity to
give us some insight on the "person behind the blog."

It would just take a few minutes of your time. The interview form can
be submitted online here Submit your

Best regards,

Mike Thomas

Anonymous said...

Regarding 'Debbie McGee' putting an alternative view-point out there, it was obviously not needed in your case as a couple on the same page, but, quite often in consulting rooms one person might need an advocate to help them articulate something their partner won't let them say.

All the best,

Bad Fairy said...

Just found your blog, what a fantastic read! Keep telling it like it is.

Good luck with the book too.

Bad Fairy x

Anonymous said...

Hmm. Hopefully Debbie McGee has learnt something from your consultation, which is probably the point of being a registrar/assistant.

Best wishes to you and P.