cancer for the young

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You can never not have had Cancer.

So I mark my “burtaversary” (long story you can read about here) most years, in so far as it has been 3 years, and I’ve marked it every time. Sometimes it’s from the time I found the lump, sometimes it’s from the time I lost the lump. This year it’s actually from when I was told Burt (aka the lump) was cancerous.

I found out I had cancer via text and a phone call. People are sometimes shocked by this, they think it’s cruel and unusual of my Doctor but actually I think it’s more humane.  Everyone knows that good news can just be told then and there, so asking to see me in person was a bit of a give away. Plus the way the news was delivered, it was not the worst thing that happened that day, so ya know, pick your battles. If the ‘how’ and not the ‘what’ is distressing you then count yourself lucky, I’m guessing you’ve not had cancer, our frame of reference is somewhat wider.

Before my own diagnosis I thought I was pretty cancer savvy, up on the lingo, the treatments, etc I didn’t really know ANYTHING and I wasn’t going to learn much on that first day, other than mammograms are surprisingly pinchy. Nothing really sinks in after the phrase “you have cancer”, you are all teflon and shock after that.

So unsurprisingly it took sometime for the “you can never not have had cancer” factor to really start to make sense, and boy do I remember being pissed off about it.

The YCNNHHC factor is not something you have to deal with at first, first it’s all about the removal, the meds, ‘the getting through’ but then slowly it begins to dawn on you. For me, my age and type of cancer meant that I would be on treatment for a LONG time, preventative measures.

The reason I’m writing all this now (and probably again) is that 2 weeks ago I came off  Tamoxifen again (I had a brief stint without it last year, here), hormonally speaking things are messy at present. I had decided to come off them probably 6 months ago, after it became clear that the lower dose was not any easier to live with, but I stayed on it, I managed 2 years in the end, which is sort of the bare minimum.

My doctors wanted the extra year on the stuff because well, it’s effective and they didn’t want the cancer to come back. That’s how they talk, I don’t think they mean to, or maybe they do because they do not want the cancer to come back but it’s hard to hear about the cancer coming back.

My rebellious nature means 2 days ago I was sent to see my Oncologist to talk over options. Due to a mix up, we’d been waiting to speak to the Doctor for over an hour:

You have to wait in oncology, where you’ve heard most of the distressing news of your past cancer self. You have to wait surrounded by people who are sick, who are fighting the good fight. You smell the familiar smells, see some familiar faces. You have to get weighed and measured again, which is pretty much a weekly thing while on chemo, but you can’t for the life of you figure out it’s relevance now; unless it’s to remind you that no matter what you do you are still A STONE heavier than before cancer and that is somehow pretty humiliating.

In short you get sad and anxious in ways that are also familiar. I don’t mean to toot my own horn here but it takes a certain kind of badass to sit in that waiting room and still want to shed the protective layer that Tamoxifen affords you – badass-ness, recklessness or maybe hormone therapy is actually incredibly crappy.

Eventually you are speaking to your oncologist, who you’ve not seen in 2 years. He is kind and sort of giddy to see you, in a way that reminds you that you are his success, and that you are more than likely a highlight of his day. However, you are his success and you are wilfully going off treatment, so you feel you are a disappointment.

Like I said, he’s kind but he’s doing his job, he’s surrounded by cancer, he knows that secondaries are no joke, he’d want you on Tamoxifen for ten years. The term quality of life gets banded around quite a bit, other treatment options are mentioned, none are appealing, all involve keeping a level of unnatural medication in your system for years at a stretch, or having your ovaries removed and plunging yourself into actual menopause. None of which in your 30′s sound like what you want to be doing with yourself. It’s the opposite of sexy, I’m pretty sure if you were to look up this conversation, it would be in the dictorionary under ‘The opposite of sexy’. Though, perhaps it would read:
           The opposite of sexy : 1a : The above conversation. 1b : Donald J Trump.

Nothing is decided but the choice you thought you’d made, sensitively, painstakingly, rationally isn’t so shiny anymore. You can’t feel as proud as you had, for taking what you think is a brave decision to live your life; to purposefully hold higher, quality over quantatity because in Oncology, it seems cancer will inevitably come back and you are playing russian roulette.

You can never not have had cancer, it’s the gift that keeps on giving, if by gift you mean thing that makes me feel incredibly sad and pretty tired.

So what now? Well, I want a year free of all medication, it used to be a lifetime, however long that was going to be but I was chastened by Oncology. Oncology would prefer this to be 3-6 months but I’m standing firm, I want to remember what it was like to feel entirely healthy, to give my system a full break not just a pause. I want to use the time to become strong and healthy in body and mind, away from the pills. And then I guess we will reassess.

changingfaces.pollygosh

Year One

I have been working on my practical chemo guide (for the zillionth time) – it should be hitting little blog by Christmas 2016…..

However, this week marks one year on from finding Burt (the not so benign), 11 February 2014 -fact fans. Yes, it did rather over-shadow Valentines Day, not that we’re massive celebrators (of commercial love day, anyway). This has left me puzzling about how to… Celebrate?….. I don’t know, but attention must be paid. It’s too huge not to.

Especially as I was signed off of the Oncology Rotation last Monday. A moment I practically started counting down to, since the day I got the diagnosis. When it actually happened, I freaked out instead, of course I did! I freaked out to such an extent, I was momentarily jealous of the people still going through treatment. I don’t mean to be flippant, it sounds stupid now I write it (of course I don’t want to do Chemo again) but while on treatment, you have a purpose and you’re in this little bubble. It’s a rubbish bubble but it’s got some structure and doctors; plus you’re probably bald and you look sick.

Oh the irony, when I was bald and looked sick, I complained. Now I’m complaining because while I look ‘normal’, I feel anything but. The scars on my brain feel like they are going to take a lot longer than my body to heal. I don’t want to look sick and bald again but I wish there was something, like the green ‘L’ plates that lets people know I still a bit shaky, all things considered.

So, it turns out, I’ve got a bad case of the “Now What’s?”. I’m like Cinderella after the slipper fits, Snow White after that pesky apple got dislodged or Sleeping Beauty after the Kiss. It’s called a Happy Ending, stupid.

I wish it was that simple. Here am I, cancer free, it should be all sunshine and lolly pops, shouldn’t it?

So why do I feel like I’m just back from an Alien abduction? Strip searched, hosed down and pushed back onto the streets clutching my clothes in my arms and blinking at the sun like I’ve not seen it in a year.

A lot of people asked me, as I was finishing treatment, if I was going to shut down little blog, “now that I had nothing more to write about”; which 1) means they don’t know me very well, I can riff about ANYTHING and 2) is indicative of this whole situation, just because treatments stop doesn’t mean the experience does.

My therapist asked me the other day if I felt if I was in distress; I had to unlock my jaw to answer. I’m like a coiled spring, I guess being in fight-mode for a year will do that to a person.

I sound like a whining, complaining dick, don’t I? Do I get points for knowing that I do? I’m cancer free. I know how lucky I am. I count my blessings everyday, I do. I’m aware I should be on top of the freakin’ world and I’m just not. I’m flummoxed.

There’s a billion things running through my head at all times, it’s a jungle in here, I tell you! A jungle will lots of sly, yellow eyes staring out at me through the massive jurassic-equse foliage.

Heck, I’m still waiting for this to make sense of any of this, and when will my earth mother, live and let live credentials finally be realised? Where’s my goddam wisdom?

I want to grab at people and ask; how long will I remain cancer free, how should I feel about the slim-to-none chance of children, what will the genetic testing be like, do you live like you’ve only got 5 more years, if so, how do I do that? how long before my mind and body feel like they did a year ago, HOW LONG WILL I REMAIN CANCER FREE?!? and on and on my mind whirls.

Do you know what the most common answer to all of these questions are? “Give it another year”. I’m serious that’s what I need, time. Apparently. Well, ironically enough, I think everyone who’s had a brush with cancer has an interesting relationship with time….

So, while I’m grappling with the above and trying to remember what it’s like to be a more normal human being, and whether that’s something I have an interest in. I thought I’d list it out.

The 5 Best Things that came out of having Cancer (if you squint a bit and add a hefty dose of positivity):

1) Writing, this Blog which leads on to –

2) Finding my voice, I’m more outspoken now. I just think; what’s the worse that could happen?

3) I am far less aware of how I look these days. Being bald and moon faced, was an important lesson in vanity… This doesn’t mean I’ve lost my love of lipstick….

4) Who my friends are and they are blooming ace.

5) Love, lots more love.

pollygosh_eggs

(Re)Growth

Growing your hair back from scratch is like carrying the cutest, rarest pet with you at all times. That lives on your head.

I think of this new growth as fur not hair at all. It has this minky colour, which is more blonde-y, grey-y , brown-y (it’s mink, that is the colour I just tried to describe-y) than I’m used it being. It’s short and thick and sooooooo soft, like a pelt of fur. I may be hunted and skinned at any moment.

I croon to my hair and rub my hands over and over, my now not bald scalp. Like my own personal talisman. A., so he tells me, gently runs his fingers over it while I’m sleeping. I don’t know how it feels to watch the person you love change from so many different extremes (I hope I never get to find out), but I’m sure I’d be pleased when they got their hair back too.

Some of my work colleges only met me for the first time as a bald, moon-faced creature. I didn’t have eyelashes at the time! I find it extraordinary that in 2 months I’ve grown approx. 1 cm of hair and more eyelashes than I have patience to count. The fact that I don’t feel I have the time to count my eyelashes, should tell you how drastically my life has changed again in the last few months.

People want to and like to touch my head, it looks so much like a velvet cap. I think it’s difficult not to want to stroke it. You see? Pet on my head. When I meet up with people after time a part, I automatically lean in so they can pat me. That’s weird right? I’m pretty sure I’ll stop this soon.

The touching of my head by others, often without permission, took no time for me to get used to. I was going to write that it feels weird and like a strange invasion of personal space but stroking my hair comforts and fascinates me, so I assume it does others too. It’s such a joyous time. I’m happy for people to share my joy.

I guess this may be how heavily pregnant women feel, though I read most women aren’t so into randoms touching their bellies. Are bellies more intimate than heads? Perhaps as you are growing a person not just hair….

As I’ve been told quite recently that conceiving a baby is not likely (we’ve got 2 chances and about a 20% success rate, each time); this is perhaps the only time people will feel able to randomly croon while patting a part of me, so feel I should embrace it.

See what I did there? I got all serious in a pithy piece about hair. I’m not sure how I feel about this information yet. It’s pretty fresh but obviously my subconscious it interested in discussing it.

So, so I went to see a specialist, who told me the news. I got pretty choked up, more from shock than anything. My first thought was; this would be so much worse if I’d always wanted children, if I couldn’t imagine my life without kids, I would be devastated right now but I’m not sure I do and I totally can, so just breath. Then I told A. and he took me in to work. I’ve not, we’ve not, had much time to unpack this whole thing yet.

I’m angry it’s another area of my life that I don’t get to control anymore. I’ve observed, even in the short amount of time since receiving the news, that people assume you want or are able to have children. I’m not surprised or feeling particularly outraged by that assumption but truth be told A. and I are some what ambivalent.

We also feel we are in the middle of a battle that hasn’t ended yet and finding this out is like losing a squadron. It’s not nothing but we have to concentrate on the whole battlefield at present. We can mourn later if that’s what we choose to do.

A. has been showing me pictures from magazines of older couples with lovely homes and wonderful bear sized dogs; he says that they look happy. They do look happy. We are very happy at the moment too and as we are ‘living in the moment’, I think I’m as fine as I can be.

Besides I get to carry around a pelt of fur, on my head, like a pet – not everyone gets to know what that feels like.

pollygosh_musings

Musing on My Mother, from an Orange Grove

I’m writing this sitting with A in a hammock in an orange grove in the South of Spain. It is as idlic as it sounds, not a cloud in the sky.  A is reading a book about science, it is my lovely lot in life to be surrounded by men, with a love of science. Every few pages, A looks up with a ‘huh’ waits expectantly for me to ask ‘what?’  He then reads me a section. I feel I am reading the book as well, which works out nicely because I always meant to.

Until it occurred to me a minute ago that this is probably one of those moment I’ll want to remember, I was reading also.  My book is an autobiography about a woman who hikes the Pacific Coast Trail, alone, after her mother dies (no I did it know that fact when I bought the book).

I’ve just read a line where she’s scared on the trail, though she knows she’ll always be safe because her mother has died and that was the very worst that could happen. It made me smile and think about Miss E, my fellow motherless duckling and taker of wonderful photos. Quite soon after I was diagnosed, she had shared how shaken she had felt – “I mean, I thought we were bullet proof.”

I understood the sentiment but somehow my brushes with mortality had the opposite effect. I saw potential hazards everywhere. I became fearful for all my loved ones, practically driving A away with my constant worrying. I never worried about myself however.

I’ve switched locations, I’m now under an umbrella by a lovely turquoise pool, still surrounded by orange trees. The air has that scorched land smell and we have fresh squeezed juice for breakfast. Perhaps because I’m in a place this lovely, perhaps because I feel so warm and safe, or because of the book I’m reading, or maybe because it was inevitable but I’m allowing myself to think about my mother.

When my Mum died, I slowly and painfully became aware of the life events she wouldn’t be around for, the solicited or unsolicited advice I’d not receive, the fights, the love. I’d never get to fully understand what made such a complex woman tick. We’d never ‘do’ weddings or babies – I just never thought that cancer would be another thing on that never ‘do’  list.

Not being a mother myself, I’m not sure how it feels when your child is ill. I’m not sure if I’ll ever be a mother, so perhaps I’ll never know. Either way,  I’ll never be able to phone her up exhausted and apologise for everything I put her through. However, I never banked on knowing how it feels to live  with cancer or what it takes to get through Chemo either.

There have been times recently, when I’ve been cut to the core at how little I understood about all this, how draining it is emotionally and physically. How all encompassing and how white knuckle scary it is. How sick you can feel (and this is before chemo, fertility treatment and my Ops have been enough). She must have hid a lot, I thought I knew it all, I was 19 and I thought I’d seen all her illness. But I see now that I was still her child and she hid things.

Sometimes I hide things, A always makes me promise that’ll wake him if I wake in the night. I never do and then he’s mad the next day. I always point out, there’s is very little point Us both being awake, he can’t physically do anything and it’s best he’s rested, to deal with everything he deals with in the day. Besides just having him near is soothing, asleep or awake.

Quite soon after her death I went through a phase of worrying. If something else horrendous happened, how could I believe my mother was watching over us, protecting us, as everyone had been at pains to tell me. I reasoned if something bad ever happened, I’d feel like she deserted me twice.

I eventually mentioned this to Da, who kindly and softly reminded me that this is not what we believed. No matter what a comforting image it was, she was not on a cloud, margarita in hand stomping out all mountains in our way. The only way she watched over us, remained with us, was through the love we had for her – the conversations we shared, the life we had all lived together. I am lucky, I have emails, letters and birthday cards too.

Ma taught me a lot about how to deal and some times not deal with cancer. Her dramatic personality, coupled with pretty hardcore steroids, occasionally had explosive consequences. It was her grace, I admired most.

Grace, was the first word I thought of,  when I was trying to imagine how to plough on with all this. My Mother was also the founding designer of Cancer Chic, she rocked Cancer Chic hard. Unless it was a really bad day, she was always up and dressed, she always put on a little makeup too. Even in hospital, she requested I come and help ‘put her face on’. These may sound like small achievements to some but trust me, some days they are huge.

Ma kept a journal, hers was a lot more private than mine, but I think it helped keep her sane. She started on a path towards a Masters degree too. Gosh she was strong and smart to boot.

Like animal species the world over (A’s book rubbing off on me) I watched My Mother, to learn the Art of Survival. It was just, at the time, didn’t know I was doing it.

PS there’s now a traditional Spanish trumpeter playing in village below, his music drifting up to us. Oh, I’m wearing a coral red on my toes called ‘Macbeth’ too. Today is a good day.

pollygosh_eggs

How do you like your eggs in the morning?

I am swimming in hormones at the moment. That sort of statement normally sets my teeth on edge, I hate how flippantly the phrase “hormones” gets bandied about, normally to the detriment of womankind. However, at the moment, it is a fact – I’m injecting them all myself.

So, fertility treatment, another fun off-shoot of getting cancer ‘young’.

What to say, what to say?

Well, I lasted the first week, no side effects at all, that I was aware of. Day 8 found me in tears for no real reason (I’ve been on the verge of a sob-fest ever since), I coupled this with eating, scratch that, inhaling a box of chocolates, in a sitting. I did not share those bad-boys, no sir.

It is PMS on crack. Made worse because I have an awareness of what is causing it all. I can’t be all indignant when A. gently points out, that the problem is hormones and not the fact that the world secretly hates me. This takes the wind out of my ‘right to be emotional’ girl-power sails, because it so IS. I am not emotional, I am OVER emotional, the awareness factor really is no fun for me. It’s probably better for those around me, I am trying to curb my stroppiness, some what.

I’m also really, really tired. My month of freedom and busy social whirliness is having to be punctuated by naps, a lot of naps. I can sleep all afternoon and then sleep some more – I’ve become a Sloth or a Koala or something. Hence why I’m actually writing Little Blog more at the moment. If this blog serves as nothing else, it is at least record of how changeable this whole Cancer thing is – like we didn’t know already.

I am also relearning basic biology. I tried to bluff my way through the first 2 appointments and then needed to admit, I have very little memory on how my body works. It’s so shameful to admit you don’t know, yet relearning is so fascinating at the same time – plus none of the boys in my class are punctuting the lesson with gagging sounds.

I am presently growing 19 egg follicles, 19!  The average (after fertility treatment) is between 9-13. I was proud of over-achieving until it became obvious that, I am dangerously close to Hyper-stimulation. 1 more follicle and I’ll be needing blood tests. I feel, for some reason, like a octopus with lots of egg sacks. Sexy.

They’re not small either (well comparatively), is it a surprise to anyone else, that they will be ‘harvested’ (yuck) at 17mm? That’s nearly 2cm, and there are 19 of them! Where am I finding the room? No wonder I feel fat at the moment……

I need to salute those out there, who inject themselves daily, often for long periods of time. I was full of admiration before, but I know exactly what it takes now and I am a chicken. It doesn’t help that my belly looks like a pin cushion.

The needles I use are the finest, thinnest kind but I’m still finding it counterintuitive to push one into my skin. It’s that puncturing sensation that I don’t like. It doesn’t hurt, hurt – but it stings a bit, the level of discomfort changes day to day with little or no reason, that I can find,

A is in charge of prep, neither he nor Dad could really stomach (boom boom) the actual injecting. I’d also feel, irrationally, resentful of them sticking me with a needle twice a day. Better just get annoyed with myself.

A and I run through almost the same script every time, it resolves around me hovering with a syringe millimetres above my abdomen and A. attempting to bribe me to take the plunge.

A: Ok, you can do this, there’s a cotton ball in it for you….

PG: I don’t want a cotton ball.

A: There’s a cup of tea too.

PG: I don’t want a cup of tea.

A: A pony?

(A will bribe me with anything but not a puppy….. proving these are empty promises – I’d have a field of ponies by this point if they weren’t. I do always get the cotton ball and the tea though)

PG: I don’t want a Pony, I don’t even want children. Let’s stop all this.

A: I know it’s not easy, but you can do it, you’re getting so good!

PG: I am not. We’ve been sitting here for 3 minutes.

A: Come on now, it will be over quicker than you know. Do you want me to hold you?

PG: NO

A: I’ll dance for you.

PG: Please don’t make me laugh, I can’t use my stomach muscles.

A: Ok, I’m going to get the cotton ball (exits)

PG in the meantime injects herself….. Can’t remember how to hold the needle and push the syringe at the same time.

A. returns to find PG with a needle in her belly and an exasperated look.

A: Do you want me to push the syringe in?

PG: I can’t remember how to do this.

A: Slowly!

PG finally sorts herself out, administers the injection. A hands over the cotton ball.

There’s really not any blood or anything from the punctured skin, but we still do this every. single. time. It’s our new tradition, I prefer our cocktail traditions, or movie night traditions more…..

Hopefully though, by Friday, my little octopus eggs (imagine if they actually were, there’s a shock 2-3 years down the line!) will be chillin’ in a freezer somewhere and I can go back to normal, well, normal-ish.

pollygosh_livin

Better Get Livin’

It has been all quiet on the Little Blog front lately, sadly there hasn’t been another Cancer Miracle*, just a combination of events that have left me a little preoccupied.

 

A. returned home from his extended work trip. I cannot tell you how wonderful it is to have him back. It was weird at first, apart from a very precious, stolen week, prior to my lumpectomy, he’s been away through most of the drama so far. We are now learning to navigate how ‘We’ as a ‘We’ do this. We laugh a lot and we are both being patient.

 

I am staring down the Barrel of a Gun marked Chemo. I really wasn’t expecting to be. That sounds weird, what with the whole cancer thing. Everyone knows these two go hand in hand, best of friends, thick as thieves. I knew this, I knew this up until the moment it looked like I’d dodged that particular bullet.

 

You see, all the way through Little Blog, I’ve said I was lucky (except when I’m in grumpy-mode, when lucky can take a running jump), I have been, I am. I shall bore you with the check-list of what has gone my way at another point. For now, trust me, I wasn’t being all Pollyanna-positive entirely due to my plucky tenacity and can-do attitude. I was backed up by science and I never disrespect science. 

 

It came down to one test, one lousy test – all I needed was a low score, which everyone expected (given everything else), I would get. A medium score, would give wiggle room but No, I aced it – too high to argue with really. A very bitter pill, considering I was never really, what one might call an academic -all I needed to do was flunk, it just wasn’t to be.

 

I should really never forgo my motto “Hope for the best but prepare for the worst.” I got a bit cocky again, the motto was totally ‘forgun’ for a while there.

 

When Burt was removed, so was the cancer, everything that follows is to stop the cancer (Burt’s Posse) returning**. Lucky in it’s own way, very lucky considering the alternative but not easy. To carry on the Gun analogy from earlier – where chemo is concerned, I needed to pull the trigger. I needed to decide if this treatment was happening. Ok, I would be going against medical advice if I didn’t go a head but where once that would have seemed unthinkable, it was to my mind, a real possibility. 

 

 Just as I am learning that, at first, pushing a needle into you abdomen feels counter-intuitive***, saying ‘Yes’ to four and a bit months of preventative chemo, which might not actually be preventative / might not actually be necessary – depending on the way that unknown deck of cards is stacked is, well, counter-intuitive is the very least it is…

 

As MO points out, you have to be physically and psychologically ready – I have until early June and a to-do list of epic proportions.

 

As Queen Dolly Parton croons “You better get Livin’”, and I have a lotta living to do, people to see, research to do, Chemo Chic to develop, and hopefully holidays to take. 

 

I do still love writing Little Blog, I will still write Little Blog but forgive me if I go be a bit ‘everyday’. I’ve not forgotten about all the things I want to write about for future me, for friends and maybe to help someone else. I just need to live ‘in the moment’ for a while – and now I shall roll my eyes because I just finished a blog post with that…..

*The first Cancer Miracle involved managing to extract a tiny acknowledgement from a some-time adversary. I think that’s when I knew this Cancer thing was serious… 
**we can talk about those fun statistic another
***we can talk about this another time too
pollygosh_so-vain

She’s So Vain

I’m really vain, really vain. Not the easiest thing to admit to, I didn’t really realise it until I got diagnosed. Overnight I became a Vain Hypochondriac*, no mean feat.
 
What was the first thing I did post diagnoses? It was not jump on Google and find support groups, healthy eating plans (hello, cake), I did not read up on everything ‘Breast Cancer’, I most certainly did not look at survival / reoccurrence percentages. Apart from the last one – truly a waste of energy – I have started to now, I promise.
 
No, what I did, almost straight away was to start Pinteresting cool short haircuts. Though, I suspect you may also need the face of Michelle Williams, Emma Watson or Jennifer Lawrence to actually pull these off. A point, I’m studiously trying to avoid, especially as I may well be bald soon anyway.
 
I am yet to find out about my “treatment package” – I think this term sounds suitably ‘Spa’. Some radiotherapy with your pedicure? If you insist, which you do. As I’m so young (yawn), Chemo is a very real possibility – in fact I’m very lucky that there is a slither of hope that, I may not have to have it. Oh, Cancer Roller-Coaster, you are just so fun.
 
I once managed to get two different types of infection on my nose at the same time (it’s a talent), my snout was basically a big ol’ puss filled mess. I cannot tell you how self-conscious this made me. My confidence plummeted and a became a grump, I hid behind a turquoise and pink tartan baker-boy hat (there really was no excuse for making the situation worse…) for nearly 2 weeks.
 
I know how changing from the ‘norm’ can effect me.
 
I’m concerned about the bald thing too, we are shuttling along towards Summer and there is no way I can wear a cool, slouchy beanie hat in July without boiling – which may be worth it.
 
This leaves scarves, I’m not sure if you get given scarves when you start treatment but some of the ones out there are a little too out there, if you catch my drift. I’m wondering if the budget will stretch to a little vintage Hermes (or at least something that looks like it). However, the truth is, bald head under a scarf screams “I’m Having Chemo but look how well I can hide it”.
 
I hope I will be brave enough just to rock a Bald (heavily SPF’ed) head; I worry about how cute my skull shape is though. I have a feeling due to my clumsy nature and a particularly hurtful incident, riding my tricycle on a frozen duck pond (that was not a smart plan, 5 year old self) - it may well be lumpy.
 
After fretting about all of these things, I very swiftly rang my friend Miss L -1) She is a brilliant human and we are the founder members of the Motherless Duckling Club, meaning we’ve gone through some stuff together. 2) She is one awesome photographer, she’s seriously great. I wanted to document ‘me’ before this ‘me’ was changed.
I know some of these changes may well be fleeting but some are more permanent. I just wanted a record, for my future self.
 
Miss L happily agreed and soon she, her sunny personality and her wonder camera came for a visit. Not long after lunch and cake (which possibly wasn’t the smartest move, but cake is cake), I found myself *almost* starkers posing for photos. Which is not something I thought I’d ever, ever do. My training with medical professionals came in quite handy and I wasn’t as awkward as I thought…. Miss L is also very good at her job and that really helped. We laughed mostly, and realised I’d never make it as a topless model – which I’m not that unhappy about.
 
Miss L has actually Blog about this shoot on her site, link below, don’t worry all pictures are of the of the tasteful, non-explicit variety.
 
I have battle scars already, I’ll be proud of them too, eventually I hope. I find out about the rest soon. really soon. I think, with Miss L behind the camera I’ll want to document this ‘me’ too because this is the ‘me’ of now, she may be battered and not as she was but life is too unpredictable (and hopefully long) not to try to be comfortable in this ‘me’ too.
 
*more on this later……
 

Lydia Stamps Photography

 

pollygosh_testing2

Testing, Testing…

+++ Please, if you are thinking – “Sheesh, this post is long”, just read the Mammogram section and the very end of the post – I am conducting an experiment++++

 
 

I’m writing this post while consuming a glass of Prosecco – it’s my first entirely painkiller free day after surgery – Whoop, Whoop! (Don’t worry, if I’ve ended up posting this at 10am, it’s actually being written at 10pm on Friday night, that’s how we roll on the recovery highway)

 

So, two glasses of Prosecco, let’s just see how this post pans out, everyone recall our 1 2 3 4 5 Mantras of little blog*? Let’s begin : 

 

I’ve spoken about a few of the processes / tests that can occur when dealing with cancer. Below, is not an exhaustive list (I believe I would need a needle Biopsy to have full Breast Cancer Bingo) but I thought it might be useful to cover my remaining ones -

 

But first, to refresh:

 

Needle sticks – you will get used to them. Extra bonus tip; you may need to have Radio Active Isotopes injected into your breast. When they tell you this your Inner-voice may being yelling “Hells NO”, but quiet it, as this one isn’t so bad at all. It’s a very fine needle so it barely scratches, the solution does sting but only for a moment. Cake walk.

 

 Core Biopsy – Hole punch and bruising. Not a morning at a spa but completely doable.

 

MRI – I refer you to the earlier post where I almost bottled it completely due to my cockiness. In case that post worried you, if you are not being a complete prick, it won’t be so bad. Might I suggest, not listening to the music, you really can’t hear it, it’s just adding noise on top of noise. Turns out, I’ll probably need one a year for ten years**, so I’ll experiment and report back.

pollygosh_testing1
 

The New Ones:

 

Mammogram – My Mammogramographer (yes! I like it, hark medical world, I’ve created a new word – you are most welcome) was very chatty on the subject. I was apologising for my small chest (I have learnt now to always cherish what ever you are blessed with) and she said that to her (a lady who sees boobs all day for a living – mind boggling) truly small breasts are just nipples, while really large boobs take 4 or more sections to scan – good to know the world of breasts is so diverse. Before this, I have just been going on my own and the Hollyoaks Cast from FHM Magazine circa my Uni years….. 

 

She also told me that small breasts have an easier time of it pain wise, it may be more painful for those whose cups runneth more over. It’s basically squeezing your boobs in a vice. It is not dignified but at least it’s brief and I would hope, those doing the test are as kind as my lady was. I was going to write a rant here about how men don’t get their bits squeezed in a vice. Then I remembered what they do get and I deleted it (self-censoring, this is new)

 

Important point here – Burt DID NOT turn up on the Mammogram at all. This is because I am young and my breast tissue is firm (that is also my online dating profile***). If you are worried about a lump and you too are younger than 50 – make sure they do a needle or a core biopsy, remember Burt didn’t look harmful but he was.

 

CT – Nowhere near as bad as an MRI. Yes, you may have the weird remote injection (it’s like the staff don’t want to be near radiation and grow another head – I’m not of the science is behind that last sentence) and even weirder – the fluid is warm, you will feel like you’ve wet your self. It’s actually kind of cool, to experience how quickly fluids move around your body. Oh, BTW you won’t actually have wet yourself, my CT-ographer (and another one) took great pains to tell me this on several occasions, I don’t know if I looked really worried or not worried enough.

 

So, take home point**** from this blog post; these tests are happening whether you want them or not. Let’s face it, unless you are a masochist or you suffer from Munchausen’s syndrome (both of which, I am even less qualified to talk about), you don’t want the test. Well you do but you don’t. But you will have the test, you can either be brave or you can kick off and be a pain in the poor health professional’s ass. Be Brave, it feels better in the end.

 

It takes me all of my meagre courage to submit myself to tests. I think that’s pretty normal and healthy – again, unless your a masochist – running from pain is generally the way to go….

 

Inner-Voice reasoning when I’m weighing up being brave vs kicking off:

 

“The doctors won’t give me a test that I don’t really need, I want these doctors to like us.”
“You have pathological need for everyone to like us” 
“Perhaps if I show them how good I can be at taking this test, they will think I am cool and want to be my friend.”
“Good Grief”
“They will talk, in the locker room, about this amazingly brave and cool girl who took a test so well”
“Really? You’re still talking?”
“Then one of the Hot Doctors from Grey’s Anatomy will…”
“Those are Actors you freak”
“….Will show up at my door”
“and A. will kick them out”
“Hey this is my fantasy…Wait? Have they finished it already?”

 
 

I am now off to re-paint my toe nails red. This is actually my top tip ever, my lovely friend Miss B, started me doing it years ago. 

 

Paint your toes red because however undignified, painful or frustrating the days hospital visit has been, you will know you’ve been doing it while rocking awesome red toes. 

 

I think it works in daily life too. As Churchill said “if in doubt wear red (toes)” Yes in fact the Prosecco fairy has spoken, let’s make this a thing – red toes all round. Report back if you think it helps crappy days. Ignore your grandma who once told you “only cheap girls wear red nails” for the times they have a changed. 

 

Thank you!

pollygosh_testing3

*Let’s please remember the 1 2 3 4 Mantras of Little Blog 1) I hope it doesn’t happen to you. 2) these are my own personal views 3) check your bits and bobs 4) everything is better with cake, 5) Be Kind

 

** Damn you long reaching consequences of Cancer, point to you!

 

*** Joking, obvs….

 

**** Who says that outside Corporate-land? Me, apparently after a couple of glasses, can it be that I get more geeky with booze?

pollygosh_truth-speaking

Truth Speaking aka Golden Rules Vol. 1

It is another beautiful spring day outside. Unlike yesterday, I am writing this post in the waiting room of the BCC (point to cancer- what cancer doesn’t know, is that I’ve got an amazing brownie for after this meeting – point to me!)*.

Dad is reading a paper entitled ‘Presynaptic Spike Broadening Reduces Junctional Potential Amplitude’ – I’ve copied that with out knowing what it means, there are some very pretty graphs on it. I am resisting my desire to contemplate the plug sockets again (they are at an awfully funny height for sockets) and so I am writing this list of truths, rules and top tips**, I may write longer posts on some of them but here goes, in no particular order:

  • Try, if you can, to prep for your future by going on a roller-coaster, blindfold. This is what results days, tests day or in fact everyday will feel like, the highs and lows are “Cray Cray”.
  • You will come away from every appointment with a saplings worth of paperwork, proving that cancer is not just bad for you, it is bad for the environment.
  • You will not be able to comprehend how far reaching a cancer diagnoses will affect your life, present and future – this is a very good thing.
  • Lymphedema may prove to be a bigger nemesis than cancer. Grrr.
  • You will worry about money, especially if you are a freelancer. You will then realise that there are people a lot worse off, that you have options and that you are, once again, luckier than most.
  • Conversely, money worries will probably not stop you spending extravagantly on crazy things because a) it makes you happy, even just for a minute b) why the hell not? Try really hard not to go too wild because…
  • ….You will still have to do everyday, normal things like paying bills – the bank does not know you have just been put on a mental rocket to Mars.
  • Final note on shopping, try not to internet shop while high on morphine. I, apparently, have a Turkish bath towel winging it’s way to me – from what I remember, it really seemed like the most important purchase of my life at the time. (If I’m being kind to myself I could see it has a defiant shout – that I’ll be swimming again soon).  A. once bought a vegetable peeler when coming down from sedation, we already had 2. So I guess we’ve got off pretty lightly, as long as we don’t mention the shoes….
  • It will take more than breast cancer to convince Dad and A that you should be allowed a French Bulldog – not even when you bat your eyelashes.
  • Your Doctors (and all NHS staff actually) are titans but they may not know everything at the very moment that you may wish know it. Like your parents before them, they may seem God-like but like you, they are human. They are the best kind of human because they spend their days breaking the worst kind of news. Always keep this in your mind.
  • The above, is why you will spend you days at BCC trying to get the gruff, scots receptionist to like you…. heres still hoping.
  • The hospital will suggest you bring someone with you to your appointments, to help remember what is said. However, you wouldn’t take someone who didn’t love you, but because they love you, they may forget too. Don’t worry, between you both, you can cobble it together. BRING A NOTEBOOK.
  • You will realise just how vain you really are.
  • You will feel guilty, about a shed load of odd things. This will at times annoy and exasperate your loved ones.
  • When used judiciously the phrase “who wants to talk about cancer” can bring levity to a situation.
  • Following on from the last point, only use your C-card for good, preferably funny reasons.
  • You will promise yourself you will not use your C-card to gain the advantage – with great illness comes great responsibility.
  • At some point, in a fit of pique, you will break this rule. Don’t be to hard on yourself when it happens.
  • You will find a lot of humour in life with cancer, just don’t push yourself – it’s surprising how quickly darkly funny can turn simply dark. Advise others of this too.
  • Medical Professionals are not allowed to find your illness funny. Case in point; when asked about your alcohol consumption (which you will be several times a visit) your answer probably shouldn’t be a) right now? yes, Gin please or b) I am now an alcoholic (delivered dead pan)***. But they must have a a sense of humour or else they wouldn’t make you wait for the Breast Nurse in front of rows upon rows of boxes of fake boobs….
  • You will start a bucket list (or if that’s too bleak a Life ‘to do list’) when you read it back you will discover a) you will need to be a millionaire b) you are generally a lot shallower than you’d hope and c) you are obsessed with food.
  • The first 3 questions you will want to ask, upon finding out, will probably surprise you and possibly the BCC nurse you are speaking to. Asking if you can swim while having Chemo as your opening gambit for instance….
  • You will become a walking cliche, this will piss you off.
  • Your body will no longer belong solely to you.
  • Do not be cocky about any test or hospital visit – karma will bite you on the ass.
  • People will spend a lot of time telling you – you are young. Sometimes this is a good thing, sometimes a bad but because you are so vain it will always feel nice.
  • This goes for anything to do with your BMI too.
  • No one will know how to react when you tell them something like this, you wouldn’t have known a week ago, this will sometimes annoy you.
  • You don’t suddenly become any better at handling other peoples bad news. You will forget the phrases that annoyed you and use them on said people. At some later point, this will really peeve you too.
  • Always thank your medical team, your loved ones, friends, blog readers and supporters.

So Thank You, Thank You and once again Thank You. Your words of kindness and love fill my days with light.

* I also got no more bad news today – another point to me!

** Let’s please remember the 1 2 3 4 mantras of little blog 1) I hope it doesn’t happen to you. 2) these are my own personal views 3) check your bits and bobs 4) everything is better with cake.

*** Not least because they’ve probably heard it before. Several times.

 

pollygosh_rage

Rage aka the one where everyone stops reading

I’m not going to lie to you, I really thought this next post would be about diagnosis and everything that came next. It’s coming, I promise you, but it’s not there yet. I’m finding it a tough write. So please accept this terrifically un-PC ramble on Anger instead. With my apologies on every level.

 

I can’t seem to get angry at a cluster of rogue cells who don’t know any better, I can’t get angry at how unfair life may seem – turn the radio on, life isn’t fair or unfair it’s life and it has been fairer to me than a lot of people. I’m not even alone with this disease, I know of far too many people doing battle with cancer; some win, some lose but in amongst them, I’m not even that unlucky.

 

It’s like the rational side of my mind simply can’t or won’t blame biological processes (gee, thanks Dad). Sometimes, I would dearly love to have a full blown pity party with streamers and a cake, lots of cake, but I get half way into a “why me?” thought and I just can’t follow through. Maybe it’s brewing, maybe one day you’ll return to this blog to find a black-hole of a post. At the moment though I’m on the side of Happy.

 

I’m aware that this sounds sickly sweet and far too saintly, but please read on, I’m about to blow that out the water…..

 

Anger is good, I doubt you can get through any illness or loss without it. It’s what keeps you fighting and we all need a little fight in us.

 

So, do you know who gets my spectacularly, irrational anger at the moment? Those who abuse these amazing brain receptacles we’ve been given. Mine was in fairly good working order, I was looking after it ok, and it still malfunctioned on me. I can’t seem to get angry at it, so I’m going to be angry at you. 

 

1 in 3 people are going to get cancer at some point in their lives, so why in the world do you want to increase the odds that it’s you? Because if this looks like it is a fun way to spend a year or more, I’m not telling it right.

 

I guess I should go back to the first incidence of blind rage. A few days after my diagnosis I was sitting in a jacuzzi (I know, I know it’s a super tough, first world life I lead), it was pretty busy at the pool that day and everywhere was rammed*. I had had only about 2 minutes of bubbly goodness time when two huge people started tutting at me, my mind was occupied so I didn’t at first notice them, but they forced me to squish up with their eyeballs. Meaning I was bubble-less, so now I am just sitting in hot soup with 6.5 strangers, 2.5 of whom I would happily fillet and I’m thinking – “I’ve had a bad week, I really need these bubbles, here I am with my broken body, which I take care of and you don’t look like you care at all and I bet your bodies are just fine. And now you want my bubbles too? Well that’s fucking typical.” So I said nothing and got out. 

I got my passive aggressive revenge later when one of them wanted to dry their hair and I put my shoes on more slowly than normal while sitting at a hair drying stand. Yeah, yeah – How do ya like them apples lady?

 

And don’t get me started on the skin burners and the smokers – it simply blows my mind, how anyone, in this day and age would knowingly play Russian Roulette with two of the biggest Cancer Guns out there….. I have no words.

 

So feel free to tell me that you only live once, life is short and you should make hay while the sunshines.

 

1 in 3 people get cancer. Once you hear that diagnosis, you may get the anger but you will almost certainly get the guilt. The gut wrenching, stomach flipping fear that you could have done / not done something to stop this from happening to you. I imagine it’s a hell of a lot worse when that something is staring you right in the face.

 

So I say – do what you want, whoop it up with a cigar in one hand, cake in the other, butt naked in the midday sun if it makes you happy but do it in moderation and stop if you can see the effects too harshly in the mirror. Oh and check your boobs or your balls or both from time to time!

 

**** Can I book end this post by pointing out that I’m not totally ignorant? I’m aware that socio-economic factors play a huge factor, that other medical conditions can also be a cause, that illnesses like SAD and addiction are no laughing matter. That I’m aware how judgemental I sound? Can I also point out that I said that my anger was irrational? Gosh, I mean, it’s not like I’m blaming God….*******

 

*As a side note, I have observed, where I swim – in a rammed sauna/jacuzzi situation the females of the group will squish up and meekly make room, the males actively seem to open their legs wider and talk louder. What crazy Gender Politics is that about?