The Girl Who Lived Her Life in 2 Week Increments

I woke up happily at 5.30am today. Partly due to our lack of curtains (not as weird as it sounds, we live 6 floors up and aren’t overlooked, promise), and partly because A was getting up at 6.15am to commute for work. It feels churlish to laze in bed - though I totally did that yesterday.

I know others who do this daily but it’s new to me. I wrote a while back that I wasn’t sure how all  this was changing me. That I was discouraged by my lack of Earth Mother credentials. Well, I think mine is going to be a quiet revolution. 

I have, without realising it become an advocate of ‘living in the moment’. This isn’t something I’ve actively sort out, it’s medical more than anything. I simply don’t know how I may feel after the next Chemo or even tomorrow, if we’re talking mentally - though tomorrow is Dolly Day so I guess I’m going to be JUST FINE!

I also crave outside. I used to be the girl who loved to be ‘In’, all my favoured activities were ‘In’. Frankly, I think I was a little on the lazy side. I preferred to read ‘In’, even on sunny days. Now it’s about ‘OUT’ - fresh air and sunshine because I can remember what being ‘stuck inside’ is like. 

So why not make hay when the sunshines? It’s not that I rush from minute to minute always seeking out the next ’new experience’. It’s writing when I feel good, walking with Dad, seeing people I love, working on the allotment, even just knitting or cooking. It’s about enjoying what you’re doing, when you’re doing it; remembering you are lucky to be able to. Taking the time to just think “WOW, I feel good today.”

Nora Ephron wrote an amazing article after her best friend died, about not saving things for best. I read that article, several similar articles, I’ve read books on the subject. I even lost my mother. I always thought “I should make the time to feel grateful, to enjoy this”. It’s just so darn easy to forget. 

So forgive me if I become the voice in your head for the next few months, poking at you to stop and smell the Sweet Peas. To stop making mountains out of mole hills, to just fucking smile! For I am the women who wears mascara simply because she still has eyelashes! 

So I am being a Pollyanna and people who sign and strop do frustrate me. I’m not going to apologise for that either. People are very lucky I don’t cup their face in my hands, kiss them beatifically on the forehead and whisper "Remember to Find the Time to Be Happy!" Though I guess I’d be finding the time behind prison bars; strangers don’t like to be touched.

I have been angry and you can read about it on little blog. I know from viewing figures that those are the posts people seem to like to read and that’s fine. Who really wants to listen to a privileged, non-working, youngish women wax lyrical about being Happy? What can I possibly know about your troubles? 

Don’t worry, I’m sure we will all be back there at some point. Going bald will prove excellent fodder, I have no doubt. This disease is so changeable and the emotions that go with it are complex.

I have no idea if Chemo Round 2 will hit me the same. These ‘well days’ seem like a precious gift. I found out 4 months ago now, life changes in an instant. So live in the moment. Embrace the Pollyanna.

This post is also for the future me, just as much as it is for you, the me when all this is over with (such a shiny far of beacon presently).  Just in case this feeling doesn’t stick around. I hope it does though. I hope I get to hang on to it because fuck me, if it doesn’t feel good.

The Flowers that punctuate this blog post are *some* of those giving to me in the past few months. Thank you to all those who brightened my darker days. xxx

Update 1

Well Hello There!

I was going to write this update in the a numbers breakdown style, a la Bridget Jones; Nos. of Times Sick, Teaspoons of Apple Sauce Consumed, Pills Popped, Hours Slept etc….

Good sense prevailed however, so I shall just say after a a week and a half at my darling Papa’s home, I am back at the flat! I was  even on my lovely, lovely allotment yesterday.

It’s good to be back. Though I cannot ever thank my Pa enough for taking care of me and answering my every Princess whim. He now passes the torch to A - an altogether tougher task master (but that’s necessary too).

For many reasons, simply not that interesting to go into, it makes sense for all of us to manage my weeks this way (though these things are changeable and so am I!).

For those who want to keep up, this in my 3 Week Cycle:

Week 1 Chemo Week: Apologies if I go undercover this week, no texts, emails,          phone calls answered etc…

Week 2 Immune System Failure: I try not to hug, kiss or in anyway touch people but am out and about, Available for tea / coffee at home, occasional outings, Sorry No Children.

Week 3 Normal Service Resumed: I’m back baby! Please hit me up with fabulous invites and leisurely coffee times - no really, please do. I may rabbit on at you like a hyperactive child - I am giddy on life! A and P will be pleased for you to take me off their hands for a bit….

Of course this is Chemo so all the above is ‘Subject to Change”  - Boring!

I also wanted to mention, I’m probably not going to write much, or at all, about the nitty gritty of my Chemo. Not yet anyway, I’m not being coy, I just want to do so in a more timely and responsible fashion. 

Little Blog is above all a personal record for me and my loved ones, I will therefore have to find away for telling “My Life with Chemo” story but should anyone stumble here looking for guidance or reassurance, I simply don’t want to scare them. Buy me a Non-alcoholic drink and I'll happily spill my guts in person...  

Everyone reacts differently, everyone will have their own way through. It may be, I get others on here to write about their time too, highlight those differences. If anyone wants to or knows of anyone who may want to share, please contact me.

Thank you to everyone for their support through this first round. 

Week 1 starts again on : 2nd July 2014

Yuck

Kiss And Makeup

I have a confession to make; a dark little secret that I share with very few. Of the things I’ve written about on little blog, I’m probably the most nervous of sharing this. The fact is I am full on, flat up, addicted to make-up. I love it. I love the colours, the textures, I love the rituals, the camaraderie, the special alchemy of the stuff. I love it’s transforming nature, how it can enhance, I think it’s genius. I’ve got buckets of it and I play happily with it for hours. Only to wash it all off before leaving the house. Phew, that feels better, one less secret now. 

I’ve spent time (and believe me, I’ve got time), pondering why this feels like such a great big secret and the answer is “feminism”. I used to believe it was anti-feminist to enjoy makeup because I was dumb. 

I believe in equality for all, therefore I am a feminist. I heard it broken down that simply recently, takes all the pressure off. Liking something as frivolous as makeup in such an obsessive way used to make me feel stupid, ditzy, an anti-feminist. Are there more intellectual hobbies, more improving ways to spend time and money? Would you like me to answer a more obvious question? But it’s my joy, my hobby and just as my love of Radio 4, patchwork quilting or my love for my allotment doesn’t define me; this shouldn’t either.

I actually feel sorry for the men out there who feel they can’t wear makeup. Imagine facing an Ex, a job interview, a funeral without a few reassuring swipes of something fun or comforting. It shouldn’t be a prescriptive thing - I don’t like the idea that it’s armour exactly - it’s makeup, it should be a joy. I never go to a doctors appointment without some on, though. It’s my little “fuck you” (not to the Doctor).

People, mostly women I guess, abuse their makeup, leave it hidden in dirty cases, gathering grunge. Like it is something to be ashamed of because smart can’t be pretty and pretty can’t be smart. Well, studies, discussions and countless Women’s Hour panels haven’t sorted through this one, and I doubt I can here but it’s bullshit, frankly.

We are all smart enough to know that society and the media dictate a ‘Pretty’ and for whatever reason, that version, shines out to a lot of us; like a street lights to bugs. Whether it’s everyday or occasionally, we all feel less than perfect (for any number of reasons).

I try to live by the simple rule; that the days I 'win' on feeling good about myself - whether that is my version of pretty, smart, kind, helpful, strong or brave - need to out-weigh the number of days when I don’t. Those days when comparison robs me of my sense of humour, when acceptance is just that tiny bit out of my reach. If I don’t tip the balance the right way, well then, something needs to change.

I was very freshly diagnosed when the ‘no-makeup selfie’ furore (good grief - can the fact that this was a debate at all, when there are simply bigger issues for women-kind make me feel a little sad?) broke out. Are we not all wise enough to know; if you cannot walk down the street without an inch of makeup, if you struggle and hide behind a wall of the stuff; this includes pretending to just really like yourself with that amount on (the jig is up). If you only feel ‘worthy’ with makeup on, then we need to help the self-esteem issue you have? 

Enjoying and Needing in every walk of life should be a battle which we can win, in order to lead balanced lives. Everyone is more ‘beautiful' with less makeup on, please stop the caking madness, it’s bad for you. 

For the record - ‘no makeup selfies’ cannot cure cancer. I did not feel like I had less cancer because of it, but nor did it remind me that I had cancer, everything reminded me of that…  

Do I feel sad that the ‘Tag’ existed? No, cancer itself makes me sad. People feeling futile, while those they love get sick and creating a movement? This does not make me sad or even question society. Some people run, bake, shave their heads, it’s all the same, trying to feel less useless in a scary situation. Who are we to judge how others do that? But if you felt overly brave doing it, that makes me sad because wearing makeup is a pleasure and a privilege not a necessity, never a necessity. 

I used to pack powder (Boots 17 Nicely Natural - only if your ‘natural’ shade was orange- whoop whoop) on. I’m talking hourly, I’m talking you cannot see skin under it, tide marks round my clothes, packed on. I felt naked without it, I honestly thought children would cry and flowers die if I unfurled my naked face to the world.

I was 14 years old and had the skin of a peach, seriously. How foolish are the young. Thankfully, I grew out of this reasonably quickly. I cannot remember what switched in my brain but all of a sudden I didn’t need that amount of stuff on my face. Perhaps a little self-confidence. Not much mind, as I still struggle with that.

I do remember the feeling of freeing myself from it though, of just being brave and not caring. 

I get that feeling quite often now, of just simply not worrying what the world might think of me, it’s a positive of all this. It allows me to write about my love of make-up or my blue nipple and know that those who matter, me included, love my quirks and my ‘flaws’. 

If you need to try and teach yourself the trick of this,the freeing joy of not caring, try to do it without the cancer and the chemo - you’ll be happier, trust me.

I, Robot

Lydia Stamps Photography

We’ve been staying with my Dad (Sainted, Sainted, Chief of All Saints) for a while now. For matters of convenience and loveliness mostly, and the small fact that car journeys make me want to vomit, but mainly for reasons of loveliness. 

I’m not sure if it’s because there are more mirrors here, or they are in places where one actually look in them (a mirror I wouldn’t look in!), or if it’s because our flat is smaller, so there, you can’t get so far away from them, for a more ‘overall’ look. At Dad’s they seem to be hung perfectly and I’ve discovered that from the waist up, my body looks like a battle field. More so now I have my PICC line in.

When I was little I remember Brother, painstakingly plotting, designing and executing vast battle grounds in our bedroom. Duvets, pillows, stuffed animals became landscapes for Lego, StarWars, Transformers and the odd Ninja Turtle to do battle over. Brother was quite advanced, I remember one such scene-scape actually having a soundtrack.

If it wasn’t so Avant Garde and frankly, creepy, I’d strip to the waist, lie on the floor and allow many a Lego battle to use this scarred and beaten ground to do there worst. I feel I’ve been doing that a lot lately, for any medical practitioner who wants.

There’s the red scars beetling their way across my armpit and left breast - thin, precise, skilled but angry looking and out of place, to me, having lived without them for 34 years.

There’s also the lack of symmetry, I find it far from pleasing. I’ve been giving it some thought and the only way to describe it is thus; imagine a marble bust, imagine a chisel aimed at 45 degrees at the bottom of the Busts bust. Now take that stroke. That is my left breast. Again perfectly rendered, skilfully done but not the body I’ve been used to for number of years now. Topped with an as yet still blue nipple - faded like a loved pair of jeans but blue enough to be Extra-Terrestrial.

I am feeling a certain kinship to the Mavel Comic Heroes. Iron Man or Captain America especially, thanks to the new PICC line. It’s a tube that leads from a vein in your arm to inside your chest cavity - about 2 feet of tube FYI. It’s clever and disturbing (let’s just say I’ve also been feeling for Wolverine of late) how they how they insert it. It helps preserve your veins from the rigours of Chemo but subtle it ain’t, unless you like the stares of small children, long sleeves are a must. Which is annoying because I have a lot of weddings to attended this summer.

So I say Yes to Battlefields, wars waged inside and out, I believe, according to someone in the 80’s Love is a Battlefield also. I can tell you, I think it takes a certain, strong kind of person to tell you, you are beautiful while one is dealing with all this (or even be prepared to lie about it). I’m frickin’ lucky with the Iron Men in my life, I’m too vain to do it without them.

Side Note - Chemo 1 is done. I don’t want to talk about it at the moment.

Reality Check

I had a reality check yesterday, a very timely one. I’ve lost count of the number of obvious statements I’ve made on little blog but here comes a corker - I am not doing all of this for fun, my Doctors and the people I love are not just insisting I do this, so I have more fodder for the my writing. While I don’t want to over state it, this has to happen because if it comes back, I may not get so lucky and that’s important to remember, the serious, not to be messed with, point to all this.

I’ve been I bit complain-y the last few days, confronted by everything that’s going to change, feeling out of control. Basically feeling sorry for myself and forgetting the Bigger Picture because Doctors don’t like to dwell on the Bigger Picture and that sometimes makes me forget it. 

Don’t get me wrong, you could slap me with a kipper and call me Tuesday, I’d still be more gobsmacked by just how far reaching a Cancer diagnoses is. I’ve also, as I mentioned to Dad yesterday, not been able to find one actual fun part of that diagnoses. To qualify that, I’ve made some most excellent memories lately, I’ve felt very loved, laughed a lot and (I know I bang on about this) am incredibly lucky but in terms of actual diagnoses and treatment - slim to none in the enjoyable department.

So, in the face of the next 4 months, it is easy to get and hard to shake a vicious case of the “Why ME’S?!”. There are times when trying to tackle that unanswerable (e.g don’t go down that rabbit hole) question, when I get what A. likes to call a ‘vacant worry face’ - basically I stare of in to the middle distance and my lower lip twitches, it is deeply, deeply attractive. 

Anyway, yesterday I had a rare moment of clarity. For me, it’s that feeling you get when you’ve hiked up a massive hill, it’s been tough, it’s hot and dusty, you’ve forgotten why you’re doing it and you’ve drunk all your water. There’s sweat sticking your shirt to your back and you’ve probably banged up your knee and you’ve got a grazed palm from where you’ve slipped a bit - it’s throbbing.

But then you’re up there, you look behind and see just how far you’ve come. It’s shocking because you still don’t remember why you started it and it seems such a long way, for no real reason. That fresh blast of air hits you, raises those hairs on the back of your neck, soothes that throbbing hand and cools the sweat. You reach in your pocket and yes, there’s a Mars Bar (no longer recommended). You look out, munching - neither behind and or in front - but straight ahead, the view is incredible, it’s so silent and so still - it’s a tiny moment of peace with everything. 

Of course, you know, if you turn your head, you going to see six more peaks to climb, with six more troughs to go with them. They’re ahead of you, in your way, no crafty short-cut but a moment of clarity is all it takes some days.

We are doing this, I am doing this, because I only want to do it once. I don’t want the white noise of being told the un-hearable, I could do without telling my loved ones again, without tests and needles and operations. I doing this so I can do this once. Then we move on. You hear me Universe? THEN WE MOVE, THE FUCK, ON. 

Marathons

I thought I'd better punctate this short post with calming photos. As I learnt recently in Chemo School  - no sadly I'm not joking (seriously, don't ask, I am unable to be funny or even half way polite about it yet), visualisation is a handy technique, we were told to imagine a beach, So I've given you a beach. Enjoy.

Don't get me wrong, I do think mindfulness is a useful tool. I would just reason, telling a roomful of soon-to-be Chemo patients to "imagine the wind in their hair" is not a terribly sensitive exercise. grumble grumble.

Anyway news over in these here woods is I start Chemo Round 1 on Wednesday - let the Marathon Commence! The hair is not going to stick around and due to the PICC line I need I will not be able to swim - it's seriously a toss up as to which of the above statements receives most of my wrath at present. 

I still can't get my head around the whole - pump myself full of chemicals, feel shitty, when I feel perfectly OK now - thing. 

Obviously, I do and I trust my Medical Team when they say that this is the best course of action. I'm just being petulant and teenager about it at the moment. 

It's just the unknown is scary and from what I understand of Chemo, Your Unknown is very different to someone else's unknown. You just have to do the research, expect either nothing or everything (I've not figured it out yet) and do it. 

So here's another beautiful view to mediate on and here's to the next 4 months.

Incidentally, if anyone watches Orange is the New Black - Season 1, Episode 1, pretty much how I'm feeling right now. Although, I'm pretty sure I'm innocent, though perhaps not Karmically speaking.....

A Day of Firsts

Yesterday was a day of Firsts, the First Time that I’ve cropped my hair - it is now the shortest it’s ever been, by a good few inches. It was a pre-emptive, two stage strike (to put it in vaguely army lingo - at least from the explosion films I’ve been watching).

1. I’m going to try cold-capping (I have mentioned my vain streak, right?) which I believe will be easier with short hair. Silk pillowcases help too apparently and work with the Princess Vibe I’m going for…. 
2. Imagine the trauma, as well as the mess, if cold-capping doesn’t work or I bottle it (it’s deeply unpleasant apparently - a real test of vanity) and I started losing very long hair. I am not the best at brushing my hair anyway, A. is constantly teasing me, my moulting clogs up the vacuum - magnify that to the power of 100! I’m fond of our vacuum. 

When this whole thing started, I’d been growing my hair, it had just reached chest length - ironically enough. It was the longest it’s been for at least 10 years. I thought it would take me and others (my Dad mostly) time to get used to shorter hair again. So I've cut it in two stages, with an option to buzz-cut later on.....

Incidentally, the above photos are to serve as a public service announcement - I managed to scare the crap out of my Brother in a crowded cafe (where he wasn’t expecting to see me), having neglected to mention I’d had the first cut…. I shall never forget the abject terror on his face, as he tried to place the person hurtling, too fast, towards him.

That first cut was a sort of cropped bob thing, that description does nothing for the actual miracles my haircutter D worked, sorry D. This, turned out to be the emotionally trickier cut. The cruuu-ack, cruuu-ack sound of scissors cutting off my ponytail - not a sound I’d care to hear again. 

The second cut, I feared the worst but I actually handled it better. Having had a month to get used to shorter hair and bringing Miss Z along for company helped. Last time I’d sent A. off, as I thought if we made it a big deal, it would be worse. If you’re doing this yourself, take someone, it’s a distraction if nothing else - providing their poker face is up to it. 

D.  turned the chair around to face Miss Z, so I was only dimly aware of what was going on. Does anyone else have that thing, when sitting at the hair-dressers, staring at your own face - it just becomes a jumble of features and you can pick out each and every flaw? After 34 years of this, I’m pretty convinced that my eyes are wonky and I have more pores than anyone else, ever. 

I feel very grateful that I have D. as well, he’s been cutting my hair for 4 years now, so I trust him.

Yesterday, was also the First Time I noticed how much long, flippy hair is out there - cropped haired females are out gunned by a good 25:1. This could be because I was walking home through prime University real-estate, the Bristol Uni girls always seem to have the fashionable crows nest thing going on, they’re mostly blonde too or ombre (surely this has died a death now, you are not a t-shirt from the 70’s).

My First walk home with cropped hair, was a bit of an eye opener, there I was feeling completely exposed but sort of brave and it turns out I’m invisible. As a long flippy hair person, I found, people generally make room on the Zebra Crossing or the pavement at least, and cars slow down when you cross the road. The world seemed to be drinking the kool-aid of the long flippy hair. D. told me that, it was very rare for people to cut their hair from very long to very short. It’s just not done. 

When I was 14, I longed to cut my hair off, just like Winona Ryder but I knew I’d be ostracised for doing so (Mean Girls). That feeling has stayed with me for 20 years. If I hadn’t been pushed, I doubt I’d ever done it. 

As a female. there’s a confidence, a self belief you need to cut off your hair. It takes balls and a strong knowledge of who you are. I don’t have that at the moment, who I am changes hourly. So yesterday, armed only in the knowledge of who I was - long, floppy hair person - and who I thought you had to be to rock short hair. I turned myself invisible.

I don’t mind being invisible, especially not at the moment. If I do lose my hair completely, from what I remember from being around mum, invisible is preferable to the stares and the pity.  

I hope my sense of self rises from the ashes. I hope I can do the crop proud.

Oh, also, yesterday was the First Time I’d ever come across a rotten egg - argghhhh - I could of gone another 34 years without that. It was the First Time I’d ever discovered yesterday’s pants in my trouser leg too - while out in town no less. I guess I was more nervous than I thought. 

I’m actually grateful for these Firsts, it meant yesterday wasn’t all about hair.

Top Fives things I’ve discovered, so far, about short hair

1. Swimming feels amazing. 
2. First time ever my hair looks better now I’ve slept on it.
3. You can save 10 minutes of drying time (imagine what I can do with that*)
4. I can now get rid of all hair bands. A. is most pleased about this, my hairbands used to multiply colourfully, all over the flat. 
5. I can spend all the shampoo money on lipstick

* list to come