tiltingheads

Cancer and other stuff

Archive for the month “December, 2011”

*NEWSFLASH* – the 13th fairy godmother

Since posting about the bloody hair nightmare last night, my life has since been changed by a woman I only met for the first time today, but who is one of the kindest, most wonderful people I have ever met. Through a recommendation from my cancer twin, Ellie, I went to see a lady called Julie French this morning, who will be tattooing my eyebrows and liner in January. We’ve been emailing for a while about getting a date in for it, when I told her about my ‘weave’. Turns out she knows a lot about this, as she wears a piece herself. She knew mine wasn’t going to arrive for a while, and said she had one that might be suitable that I could borrow, that had been made for someone else who didn’t have it in the end. Why don’t I come and have a look? she says. Might be good to get me through Christmas. Full of doubt and scepticism, off I trot to Holland Park this morning to be met by this glamorous, blonde little Geordie who welcomes me with a big hug, makes me a coffee and ushers me into her studio. Off comes the wig, out come the clippers (thank God) and glued onto my bald, pasty head is a sort of big skull cap with bra-length, silky dark hair. For a temporary measure, considering it wasn’t made for me and it’s not a full cover so essentially I’ve got a sort of undercut – if you lifted “my hair” (I’ve only had it on an hour and already it feels like mine, actually screw that, it’s WAY better than my own hair ever was) you’d see part of my head underneath, it’s FLIPPING AMAZING. It’s secure, it’s real hair so you wash and style as normal. It doesn’t look like a wig, or feel like one and this thing ain’t budging. I can pull and pull, it’s going nowhere so I won’t have to see my horrible bald head again for a few weeks. Bye bye sleep cap, bye bye itching and toilet bowls and hoovering twice a day. Hello mirror. Hello what looks a bit like me pre-2009 again, but a better version. I’ve gone from dreading Christmas to actually looking forward to it, in just one morning, and it’s all thanks to the 13th fairy godmother who has come along and given me, yes GIVEN ME, as a gift, some new hair. Just because she wanted to help. Amazing.

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Syrup

This week I went, reluctantly, to buy a wig. My hair piece is delayed (and I have slight reservations, even cold feet about that one, but that’s another story) and I didn’t want to get caught out over Christmas as my head is just hideous. Why I haven’t buzzed it off by now is beyond me, but I haven’t. This is largely how my life is right now: wake up in the night, sleep cap has come loose, realise I have a face full of hair, go back to sleep. Morning – wake up, sweep hair from pillow onto floor. Hoover floor with vacuum cleaner that is permanently next to the bed. Try not to look in mirror. Go downstairs, face boyfriend for daily breakfast feeling like an idiot wearing this stupid sodding cap. Boyfriend goes to work. Take cap off, spend 20 minutes with head over toilet shedding and pulling hair into bowl (it’s impossible not to do, like peeling sunburnt, flaky skin), get in shower. Wet what is left of hair (no washing or rubbing, hurts too much). Get out of shower, pull hair out of plug hole. Attempt to run hair dryer over matted mess (again, no actual touching properly). Hoover again, the hair that’s fallen out from hairdrying. Pull what looks like a popsock on head. Put on wig. Spend 10 minutes trying to get on, without being cock-eyed. Itch head through wig for another 10 mins. Pencil in eyebrows, put foundation and blush on steroid moon face (good for plumping out wrinkles though, every cloud). Very, very gently put mascara on. Notice lashes in brush and slightly weird look to upper lidline. Think to self: “Christ, I’m spending Christmas with boy wonder’s family for the first time, I’d better start getting festive and jolly.” Feel vulnerable and wobbly. Leave house (if not completely floored from chemo – this time round, I slept for three days virtually and barely left the house without feeling exhausted, very unlike me), go to work, attempt to focus and engage and be normal.

I don’t think I need to say more, this hair falling out thing is dreadful, way worse than I imagined it would be, and that thought was bad enough. I KNEW I wasn’t going to handle this, that’s why I had doubts about this drug in the first place. But I didn’t have a choice, there really wasn’t an alternative. So I suppose I just have to crack on. Apart from the hair, Tax is no picnic. AT ALL. No sickness, just sheer exhaustion, aches and twinges and a confused realisation that you just feel SHIT. Which I hope means it’s working. And I must keep remembering there is the bigger picture to think about, even though the hair thing is horrific.
Merry Christmas everyone x

Balls of gold

Lots of kind people have asked me recently how the boy wonder is doing in the wake of the last 6 weeks’ madness and the honest truth is I THINK he’s doing OK, as OK as he can be anyway. He’s a man of few words at the best of times (how we ever got together in the first place is a mystery to me as we really couldn’t be more different). There was shock in the first few days after the scan and yes there were tears, and I was – am still am, to an extent – really worried about what this would do to him, and us. In February, we will celebrate our first joyous year together which is no time at all really, certainly not long enough for any years and years worth of rock solid foundations to be laid, in order to weather this kind of crisis. Ten months ago, his life was very different and I’m always mindful that it could just get too much for both of us at any moment.

But for now we’re just doing what we have to do to get through the days at the moment, and they’re good days by and large. The cuddles are tighter, longer, more frequent, so are the laughs, the soppy cats-staring-each-other-out gazes are more intense (even though this week, he said I looked like The Edge in my sleep cap. Sorry babe, but you did). I don’t know where we’re going, I don’t know what we’re doing except stumbling along trying to figure it all out, holding hands and having lots of soppy neck kisses along the way. And for however long that lasts, it’s good. I think the future will probably take care of itself.

It’s never been a secret I’m hopelessly, ridiculously, vomit-inducingly in love and I make absolutely no apologies for continuously shouting this from the rooftops. Why not? I never want to regret the things I never said. Every day I seem to have a sort of giggle in mad disbelief that someone came along, smack bang in the middle of this nightmare, and changed my life forever. For however long, it’s just awesome loveliness and every day I thank whatever God there might be for bringing out in me the kind of blind, ferocious love that makes me want to live forever and never leave my man’s side. Of course it’s not easy, and as a couple, we’re having to deal with a lot of crap we really shouldn’t be having to but what are you gonna do? Just get on with it, which it seems we’re doing.

If any of this rings true, recognise it, tell the other person, enjoy it, nurture it and never ever let it go. Love is the most powerful, pure thing in the world, truly the greatest gift I, you or anyone else could ever be given. It can cut through ANYTHING. Anything. I would have been happy with a fifth of what I have now, so yes, whilst I have had some shockingly bad luck over the last few years, receiving that first tentative email on a cold February evening last year was the best piece of luck I’ve probably ever had. And who can say that?

So my little cherub, if you’re reading this (which undoubtedly you are, about 5 days later than everyone else), on the eve of our very first Christmas together, thank you for still being here, for taking the piss out of my increasingly balding bonce, for our early morning breakfasts we’ve invested an hour in every day since we met, for the big gangly legs that seem to sneak under mine on the sofa increasingly these days, for the cuddles with those big, spindly arms, for everything. I hope this is the first of many Christmasses. And guess what…? SO MUCH x

Zombies

There is hair EVERYWHERE in this house. Having had my hair cut earlier this week, it’s now falling out pretty quickly. Have you ever had it when your hair hurts? Your actual hair follicles? It’s odd. My hair has gone from being very much alive and shiny, to dull and dying in a matter of days. I can’t touch it, it itches and in another week I’ll have barely anything left. My new hair is being made but def won’t be here any time soon, I think I’ll be very lucky to see it before Christmas. Which is ok, I have a wig on standby (that luckily I saved from last time, ‘just in case’, without ever thinking I’d actually need it), today I’ve started wearing a hat which you’ll probably see me in for a while and the new tresses will be here before you know it.

I feel very much like a cancer patient again and it’s shocked and saddened me how quickly that’s happened. I’ve spent the last 14 months, arguably the last almost-three-years, not really feeling or acting like one and within days, my new ‘identity’ has settled on me without me even noticing. And it’s not just the hair, that’s actually only a small part of it – remember this is the second time I’ve been through this. And yes the first time was miserable and I hated it but I really did think that it would only be temporary, I was told and believed that for the horror and inconvenience of losing my hair would come the reward of getting better. After 6 measly months out of treatment, recovering, getting my life back on track, it came back. And this time, my reward of ‘getting better’ would cost me one left boob. But OK, it’s not ideal, but if that’s the price this time then so be it. Sign me up.

This time there is no trade-off apparently, no deal I can negotiate, no compromise I can make. And that, I think, is what having cancer feels like to me at the moment. The realisation that I’m kind of largely at the whim of a disease that I have finally come to understand wants me dead. And miserable in the meantime. This cancer patient now sees that she is likely to die of this disease and it could even be relatively soon if this drug hasn’t worked (sorry I know no-one likes to read that, believe me I don’t like typing it). However, this cancer patient also sees that she is fighting, literally, for her life in a way she never really has before. Along with the hair, the side effects of this drug, Christmas to get through without weeping every couple of days, is also the knowledge that my scan will soon be here when we’ll see if this new drug is doing anything. Can you believe how quickly it’s come round? Shocking isn’t it? Well times that by a hundred and you might have an idea of where my head is at. I’ve only really started to process the fact the last one failed, I haven’t even begun to think of what will happen if I have to change drugs again, and how many are even left after this.

So I’m not. I’m going into lockdown, I’m only dealing with what I need to do today. That means keeping everything calm and on a plateau. No highs, no lows. Almost just numbness. Not forever, just for now while I have so many things to just somehow drag myself through over the next few weeks. Talking to a friend about how I thought this was the only ‘coping strategy’ I have at the moment, she said “like, zombie Fran?” which is spot on. Or maybe just a bit quiet. I’m not in despair, I’m not depressed or in a mess – yet – I just need to stay peaceful and devoid of any excitement for the moment. I have finite resources of energy – mental, physical and emotional – I need to do whatever I can to keep up this fight and right now, that means just bunkering down and not really playing at normality for a while. Going on autopilot. I have no doubt that when my hair’s gone, my new hair arrives and I’ve got one good scan under my belt and I know where I am with this new drug, I’ll absolutely be back in the game and I’m looking forward to that but for now, this cancer patient is just going to be a bit quiet and still for a bit.

Fairy godmothers

A week or so ago I got an email that I initially thought was one of those awful spam things, the ones that start ‘Francesca, you could have/do…’ and then proceed to try and sell you something you don’t want or need and you wonder how you’ve ended up on this tedious distribution list. So I was about to hit delete, then looked closer and it was from an address called “Fran’s fun times”. It went on to describe how some people have just one fairy godmother in their life, if they are lucky, whereas I in fact have 12. The email explained that over the coming weeks I could expect some little surprises to make my life more fun but that the 12 fairy godmothers would be starting big, and in my grubby little hands would soon be a sparkly new iPad. True to their word, the godmothers delivered and I am currently typing this on aforementioned iPad (tip, get one – it’s BRILLIANT).

It’s always a bit weird when people give you presents when you’re ill and I remember ending up feeling a bit exasperated when I was first diagnosed in 2009 by the amount of flowers that kept being delivered. That sounds awful doesn’t it? What an ungrateful cow. But I don’t mean it like that, just that getting treats and presents makes you realise that something is wrong as life is just not like that for ‘normal’ people.

Having spoken to some of the godmothers I now realise that this is not about presents, it’s their way of helping in some real, tangible way. They desperately want to do something, anything, and sadly they can’t do the one thing we all want. I often think how I would cope seeing one of my best friends going through something like this and not being able to do anything to change it, and I think I can imagine what it must be like for them. Awful, just awful. Poor them. So they come together, they plot and scheme and they buy me a ridiculously trivial new toy. Just because they can. And it doesn’t change the outcome, it doesn’t stop the hurt or the aggro or the despair or the worry. But it does make me smile and feel loved and special and appreciated and valued, and they know this. And that’s worth 10 iPads. Gold-plated ones even. It’s the thought of them all coming together on email and mobilising in the way that only they can in their wonderful way. Some of them have never met but I know having spoken to them that the whole secret squirrels thing has been as exciting and fun to organise as it has been for me to sit back and receive. So next time I’m at home feeling like death from chemo or feeling my hair come out in the shower (yep it’s started already – luckily I got it chopped this week so I haven’t got to go through the horror of watching big long chunks come out) or in that plastic chair waiting for a scan result or hooked up to a drip, all I have to remember is the 12 fairy godmothers and how they will do anything or be anywhere when I need them and all is a little bit better.

So cheers Anna, Bek, Beth, Heather, Helen, Jeena, Katie H, Katie I, Laura, Lisa E, Lisa S, Liz – I hope Santa brings you everything you want and deserve, and that 2012 brings us ALL lots of love, light and laughter. You are all very special to me xxx

Sent from my iPad 🙂

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