Wednesday, 14 July 2010

Independence day.

I think anyone who’s known me for a long time would agree that I’ve always been pretty independent. I left home as soon as I was able (not from a wanting-to-get-away-from-my-parents desire, I ought to add; more from there’s-a-world-beyond-Derby-and-I’m-going-to-find-it aspirations), I studied in Norway for a while, moved straight from uni into a London house-share, and lived a very contented six months on my own before moving in with some scouser I fell in love with.

I enjoy looking after myself, and I like to think I’m good at it. (I just looked up the dictionary definition of ‘independence’, actually, and breathed a happy sigh when reading the words ‘direction of one’s own affairs without interference’. Mm, it’s like birdsong to me, is that.) Granted, I might not do things the way everyone else does things (translation: the way my mum would) – I might sleep in til 10am or eat a jar of jalapeños for my lunch or only do my washing when there’s no room left in the basket ­– but I ‘direct my affairs’ in a manner that doesn’t just suit me, but works, too.

It’s no secret nor surprise, then, that one of the hardest things to deal with when it comes to my dodgy health (aside from the dodgy health itself) is the theft of my independence. It’s the being looked after that I just can’t handle. I’m as bad at being cared for as I am good at caring for myself. Which, of course, rarely helps matters because – after a life-changing couple of years in which I’ve gone from thinking very little about my health to making permanent adjustments to deal with a dramatically altered future – I ought to be getting better at being looked after. But I ain’t. Not from a stubborn ignorance, necessarily – I’ve recognised that I could make things easier by learning to deal with it better, it’s just that it’s so profoundly difficult to do when you’ve already had more than your fill of being everyone’s concern.

I had my first physio session for my broken back this week and, after seven weeks of invariably sitting bolt upright/shuffling about my flat/lying down flat (repeat ad infinitum) and venturing little further than the post box on the corner of my street, I’m now at a stage where I’m no longer having to hang around waiting for my back to heal itself, but rather at the far juicier juncture of being able to do something about it myself. Whether it’s taking my painkillers at the recommended time, pushing myself to walk a little further, doing my physio exercises every day or keeping a hot water bottle on the site of the pain, it’s in my hands now. It's the stuff I can affect that I love; it’s where I win all my money back.

I loved it during chemo, too (okay, so ‘loved’ may not be the right word there): once the painfully boring process of ‘sitting it out’ during the shit weeks subsided, I enjoyed forcing myself into something other than pyjamas and out of the front door. It felt like I was a little more in control again, more able to help myself along. I couldn’t do anything about a lot of my process of getting better – I wasn’t able to administer my own treatment, or fix my own meals, or even take myself to the loo at times – but when the ‘buggery bit’ (as my favourite nurse often put it) began to disappear, I reveled in my ability to spend days on my own, sorting myself out and doing things because I thought they’d make me feel better – and not because they’d been instructed.

The subject of control came up while P and I were talking to an oncologist at the clinic the other day; specifically about whether, following my upcoming surgery to do something about my worringly high chance of cancer recurrence, I’d be able to come off Tamoxifen. (The way I saw it, Tamoxifen is there to hamper the production of oestrogen, and so removing my ovaries would negate its use.) This winter I’ll have had two years on the drug, and the thought of a further three doesn’t exactly fill me with joy. I haven’t often talked about Tamoxifen any further than my therapy room, but I think the main headline is that I FUCKING HATE IT.

I’d long suspected that Tamoxifen wasn’t just responsible for my hot flushes, lowered libido and inability to lose weight, but also for the ease at which I find myself slipping into depressive thought (seriously, they should rename that drug The Fun Police). Like I say, I’ve mostly kept its effects on my mood between myself and Mr Marbles – because, really, who wants to talk about that kind of stuff over a glass of cava? (My friends and I have an unspoken understanding: whenever I’m having a low few days, I just go a bit quiet and off-radar. Tills left a voicemail message the other day telling me not to worry about ringing back; she understood that I might have ‘gone dormouse’.) But, following that recent chat at the oncology clinic, I’ve opened up about it a bit more to P. (The rest of you can hear it on here. Because that’ll hopefully save us having to ruin a conversation talking about it.)

In short, my doctors are going to have a think about The Tamoxifen Question once my surgery is done, but they suspect that they’ll keep me on it  – or at least a similar alternative – thanks to its benefits of ‘mopping up’ any cancerous micro-cells that may be moseying about my body like a game of Snake. Which, obviously, is fair enough: cancer-beating benefits will always trump depressive drawbacks. But it’s still a bit of a pisser.

I said as much to a woman I met in the clinic that day... if by ’met’ you mean that a registrar interrupted my appointment to say that someone in the waiting room had read The C-Word, recognised me and wanted to say hello. (A sure-fire new entry into the Coolest Things Ever To Happen To Me chart.) She completely concurred on my experience of Tamoxifen: ‘You remember how you were off it, which is why you recognise what it’s doing to you while you’re on it,’ she said, in a sentence I couldn’t have put better myself. (Tamoxifen-takers will be nodding in agreement here. Anyone else would do well to liken it to the way you feel on a hangover – you know that you wouldn’t ordinarily find yourself crying at a Coronation Street omnibus and, after your second box of Cadbury’s Fingers, eventually attribute your teariness to the twelve vodkas you drank last night.)

This woman, too, was trying to regain the reins on her life and take charge of her wellbeing. ‘They’ve allowed me to come off Tamoxifen for a while, but I still don’t like what it’s all done to me,’ she said. ‘I never had all this before,’ she went on, pointing to a supposedly flabby midriff that I suspect was far bigger in her mirror’s reflection than it was in my eyes. ‘So I’m trying to do something about it by walking more. I just stick my iPod on and head out. It’s a way of taking control, isn’t it?’

I thought about her words after physio the other day. ‘So I’ve got to build up my strength walking little by little and doing these exercises every day,’ I said to P.
‘And you are going to do those things, right?’ he asked, as though I might somehow prefer not being able to get out to the shops.
‘Of course I will,’ I said. ‘It’s in my hands now.’
‘Cos you really must,’ he said.
‘I’ve already said I will!’ I said.
‘I’m just saying!’ he said.
‘Yeah, well, there’s no need. I’m going to do it. End of.’
‘Good,’ he said. ‘You should.’
‘Sheesh,’ I thought after putting down the phone. ‘It’s like being a kid again.’

And it is, really – it’s like being told by your mum to tidy your room, when you had every intention of doing it anyway. But the fact that she’s now asked you to tidy up makes you not want to do it any more, because you wanted to do it off your own back – and not because you’d been directed. Then when you eventually move out of home you find yourself disproportionately pleased with yourself for doing the kind of daft things that – if you weren’t living alone – someone would have to nag you about. Washing the pots because they look messy in your sink. Having a sort-out in your bedroom because it’s time to make some new wardrobe space. Filing your tax papers because they’re making your dresser untidy. Directing your own affairs without interference. So, if you’ll excuse me, I’m heading out for a walk now. But I’m doing it because I can, and because I fancy it. Not because I’ve been told to. Right?


Carlie said...

Hey, I've left a few anonymous comments before but now have a google ID. I've been on tamoxifen since December and have been struggling with anxiety and low mood at times which I put down to my 'emotional recovery' after being diagnosed and going through treatment. Maybe Tamoxifen isnt helping!! Still I'd rather take it than not, I feel like its action against cancer and without it I think I'd feel more powerless than I already do!
I read the C word and its an amazing book. Like other people have said on here, it was almost like reading my story. Love the blog too. Its reassuring for me to read as you describe so many feelings that I have felt along this ridiculous journey!
Anyway, good luck with the exercises!
Carlie x

hel said...

love you, love you, love you Lisa!! xx

Katrina said...

My Oncologist convinces me to stay on Tamoxifen by telling me that the worse the side effects are, the more likely it is that it's doing me good!!

Love your blog. Only just discovered it recently, but have found it's a great read. Thankyou.

Sue Blench said...

Hi Lisa
I just wanted to say I love your blog because you are so like me (egotistical or what?!) I haven't had the bullshit but I have had the back brace so have some idea what life is like at the moment. Isn't the brace a joy in hot weather, how many t-shirts are you on a day??
I know how you feel about the independence stuff. I thought my back problems were the end of dodgy health (doesn't it just piss you off that your body's letting you down) but the last 3 years have been spent in and out of hospital and 3 operations. Hopefully that's the end of it. On the back front (if you see what I mean!) and I'm sure you will, you have to push your self hard (but be kind to your self as well). You will get better. 4 years after dumping my brace I qualified as a scuba diver. I know it's depressing, boring, frustrating and bloody hard work, but you will get there. I think of you often and wish you all the best for what must feel yet another hill to climb. Take care xxx

Wardotron said...

That's nice. Can you get me a Curly Wurly while you are out? Ta.

Anonymous said...

Completely agree about independence and just feeling able to do stuff as you come out of treatment. I was all better after chemo, lumpect, radio in Aug last year but the cells moseyed back and had mastect 4 weeks ago. Your book and blog are fab. I can't believe you've had the further damage to deal with. Just finding one's way back, finding the energy, mental capacity - very frustrating. Take care. Fi

Anonymous said...

I was on tam-poxy-fen for 2.5 years and then switched to Arimidex. I also had my ovaries and tubes whipped out "just in case" and have been advised that I will have to continue on the Arimidex for a while yet. If you sgets switched to a post meno drug like Arimidex, be aware the joint pain can be excruciating!
Keep up the good blog.