UNTITLED.

I can't think of what to call this post.

I can't really think much at all at the moment. I got to my hospital room and unpacked my bag and sat on my bed. Then nothing.

What do I do now?

Wait.

My sister arrives. She keeps me occupied.

My sister leaves. I'm unoccupied. My thoughts wander.

How could I possibly sleep tonight, the noise of the hospital banging against my ear drums.

I sleep eventually. Then its time.

My sister arrives, to distract me.

I get up and shower.  This is the last time I will shower as a complete person. I look down at my breast, it looks so innocuous.

When I first found out that I had the cancer I didn't equate my breast with a disease, something sinister, they were just my breasts, as much a part of me as my arm or my nose, my leg or my toes.

I hadn't realised that many people's first reaction would immediately be - 'Cut it out'. This was my right breast, my good one, the nice side, why would I want to cut anything out of it.  I understand a little bit better now.

I didn't and still don't see my breast as the rogue of my body, the rebel cells, clustered together, multiplying and growing, all the time becoming threatening to other, more vital parts of my body, like my bones, my brain, my lungs, liver, heart, kidneys.

I wonder at how it can be so traitorous, to betray me like that. I don't smoke, I don't drink that often, I'm conscious and considerate of my health, I do most of the things your supposed to do and still, here I am in a gown and paper knickers, waiting.  It's like I see my body as another entity in the relationship, it let me down in a way, it got this disease, against my will.

I sit on the edge of the bed, unwilling to lie down,  I'm resistant to it as I know once I lie down its the end but annoyingly it will only be the beginning of this wholey, unwanted experience.

I'm wearing the most awful white socks/tights on my legs to keep my circulation going.  They come to wheel my bed away, I kiss my sister and smile hopefully, calling back over my shoulder as they wheel me out the door of my room - 'You're not allowed to call me Jordan after this, you know.'

The sound of her soft laughter follows me down the hallway, as we head to theatre.

I'm more terrified than I've ever been before in my whole life.

It's all in the preparation.

Phew, my bag is packed for my trip to the hospital.

New pyjamas. Check.
Multiple pairs of appropriate knickers. Check.
Toiletries. Check.
Lipstick. Check (see 'Why I Wore Lipstick to My Mastectomy')
Journal. Check.
Embroidery Kit. Check. (On hindsight, I think I must have been delusional when I packed this item).
Lunchboxes of fresh fruit times three, in case the hospital food is crap. Check.



Right well, that's packed. Now, all I need to do is wait until it's time to go to hospital; which is in another two and half days.  I pace around my bedroom for a while, mentally ticking off the things that have gone in the bag. Then I wander downstairs, into the kitchen, look out the window for a minute or two, check my clock, again, for the fiftieth time in ten minutes and do a countdown check of how long I have before its time to go to the hospital; 56 hours, 20 mins and 34 seconds.

I go and have a quiet cry in my bedroom for five minutes. Five minutes only. It's all about time these days.

When that's over and done with, I phone my Mum, all bright and cheery pretending that everything is alright. I grin like a Cheshire cat and lie unashamedly.

'No, no. Not a word from hospital yet as to when my surgery date is. Nope. Nothing new, just going in for a few more routine tests, think they will call me for surgery in another week or so.'

The reception goes fuzzy on Skype and I silently curse myself for being so stupid. Why did I turn on the webcam? My mother is as whily as a fox and would smell a series of lies before your tongue could even formulate them.

She peers into the computer screen at her end, the webcam picking her up clearly. I move slightly back from mine, a stupid false smile plastered to my lips, the mantra runs through my head....every thing's fine, every thing's fine, every thing's fine, every thing's fine......

She believes me.

When I told my family, one after the other, I thought it would never end, worry, anxiety, sadness; all these negative emotions playing across people's faces and its all your fault.

I would never wish on my worst enemy to have to tell their parents that they have a disease. I worried my father would have a heart attack and I watched my mother's face drain of colour and her ever competent, strong, reassuring hands shake uncontrollably.  It has to be up there on the list of worst things about this whole experience, so far.

I never want to have to experience that ever again and no matter how prepared you are for anything in your life you can never be prepared for that awful moment of truth when you need to deliver bad news to people you love.

I don't want them at my surgery, distressed and worried for me. I'm trying to protect them, as sure as they would try to protect me but I'm also being selfish. I don't want to have to worry about them too,  in the midst of the whole thing, I will have enough to be worrying about. Ultimately selfish, I know.

My friend tells me, every act is ultimately selfish, as she tries to convince me to let her come visit after the surgery. She tries to tell me that it will make her feel better, so its a selfish act. I suppose in a way, she is right. Every act is selfish.

So I lie a little to my Mum and Dad, tell them everything is alright and that surgery is a thing in the future, to be worried about later.

That was the last task I had to do.  Tell a big lie.

I'm prepared now. As well as I ever could be. Surgery, here I come.

I have a sister.

‘I’m not bossy, I just have better ideas than you and those ideas are always right.’

Her words, not mine.

I have a sister, in fact I have two.  I’m extremely lucky in my siblings; well for the most part.

I have a sister who knows ‘the system’. Is that a good thing or a bad thing? I’m not sure. Perhaps, sometimes you're better off not knowing too much information. 

She says things, haphazardly,  like... ‘You will probably have a bit of lymphedema for a while’.

What? Lymphedema, fat arm syndrome, on top of everything else that I have to worry about?  Is it not bad enough that I will be lopsided, siliconed, bandage wrapped...

Or….

‘Yes, the chemo (she is allowed shorten the words, as she is a nurse and works in the profession, when she does it, she sounds competant, when I do it, I sound like I’m being nerdy) drugs they want to put you on, some woman died in the clinical trials, so they need to do a heart check just to be sure.’

Died?

That is not the type of thing I need to hear.

Gulp.

She was there when I got my first test results. She put together a check list for me of important questions to ask the doctor. She spent hours, when she should have been studying, researching my treatment plan, my drugs, alternative therapies and side effects. She phones me almost daily to check that I’m ok.

She is bossy, opinionated, a total pain in the ass, practical, supportive, caring and the best person to have in a crisis.

I don’t know what I would do with her. 


Cancer; watch your back, I have my sisters on my side! 

With eggs, please.

Biopsy results.

Is it ductal or lobular? Lobular (shite, that’s bad).

Is it grade one, two or three? Three (buggar, that’t bad too).

Is it hormone receptive? Yes (damn it; give me a break here).

Is it HRT positive? Yes (I think I’ve broken out in sweaty patches on my nose, Im so embarassed. Why is the surgeon sitting so close to me. I don’t want to show any weakness right now. Keep it together. My boyfriend is here, I have to keep it together, for his sake too.)

The consultation room is small, my boyfriend, the nurse, the surgeon and me. My voice is a little shakey, but hopefully I’m the only one who notices.

Results as to be expected, I suppose. I had been briefed that this would probably be the way it would roll.

So I had prepared myself. Chemo for six weeks (I hated the way that I had shortened the word from chemotherapy to chemo, as if to say, now I’m in the know), followed by surgery. Chemo first to shrink the lump/growth/mass/Fred and surgery to remove it.

So what was she saying now, something about oestrogen, ovaries, chemo, fertility. Yes, yes I remember these words on one of the pages, the multiple tabs I had opened up the days previous.

Fertility. Chemo. No eggs.

The words were slow in penetrating my brain. What is she talking about?

No eggs. No babies. Maybe ever.

Ever? Never?

Ok, my brain processed. What can we do?

Harvest.

An image of the bulmers advert where they are all, ruddy cheeked farmers, happily harvesting the ruby red, delicious apples for the golden, bubbling cider.

On top of this thing that is happenig to me, we now delve into a conversation regarding my fertility, or potential lack of, the prospect of harvesting eggs and maybe even embreyos. I look aghast at my boyfriend, his expresssion glazed with incomprehension.

The room is definitely getting smaller, I can practically feel the walls creeping closer.

But its ok, I can refer to the the scrawled notes which zig zag across my notebook and goole all the terms and phrases and inform myself as to what is going on and digest the whole thing, have a think about it and come back in a while and talk more. Right?

Not so.

For eggs I need ovaries that function, for ovaries that function and apparently they are, as Im riddled with oestrogen which is causing this whole mess of a situation in the first place, leading to the culmination of me having to have my breast ( a symbol of femininity) removed (the irony, the bitter bitter twist of irony is not lost on me!), I need not to be in the middle of chemo.

The surgeon stares at me expectantly. I look back wide eyed, clearly my brain is not as quick as I thought.

In slow motion she explains, if I want eggs (eggs = babies) I won’t be able to have chemo first, so its straight to surgery.

Oh!

My breast seems to almost give a tingle of panic.

They need a decision by Wednesday. That’s a day and a half away. I need to decide if I want children and egg harvesting in a day and a half.

I can’t decide if I want google or facebook as my home page at the moment, let alone these mammoth questions.

That’s why, logically me and my boyfriend find ourselves in Starbucks. Where else do you go when you have to make the decision about procreation and your future seed?

Starbucks with a green tea (organic of course).

Again I could feel little trickles of tears at the corner of my eyes, this day had been a bit overwhelming but I could not give in to them, not on the couches in starbucks with mocha frappo decaf soya chino drinking bohemians all around me.

There in followed a conversation about kids, the meaning of life, old age pensioners and who would look after us when we got old and infirm. If anything a bit of a selfish reason to have children but a reason nonetheless.

I’m all about the options I suppose. And that’s what we decided.

I’ve never been sure if I wanted kids, in fact I would always claim that I didn’t think I wanted them at all but faced with this massive decision, I wasn’t truely sure.

So let's be all about the option. Lets talk to someone about eggs and see what happens.

Cause and effect though, that means surgery, in three days. 


I only have three days to wear all of my lowest cut, most revealing tops and truely enjoy my breasts. 

The internet is my friend?

I thought a cone biopsy was one of the most unpleasant experiences a person, namely a woman, could put their breasts through.

I was wrong.

The lymph node sample is worse. The poor ultrasound lady (I’m sure that’s not her correct title, but its all I have at the minute) said that she used to enjoy her job working with mums and their tiny babies, photos through the womb for expectant parents. And now she gets to inflict pain on people, taking needle biopsies of their nodes.  I thanked her anyway, for doing her job and being pleasant and trying her best to put me at ease.

I keep having to remind myself that these people in their jobs, have to deliver devastating news to families across the country on an almost daily basis, they must get little appreciative smiles of joy when people see them coming.

I know I don’t greet my surgeon with beams of happiness, least of all because the news she has delivered me so far has been far from excellent.

The first news, the big C news was the tip of the iceburg. Words like secondaries, bone scans, brain scans, lymphodema. What the ? I don’t know what your talking about. 

I think they should write a dictionary for patient/doctor speak.

Surprisingly enough, after my first visit to the doctor I came back, armed with my trusty notebook and pen and scribbled these words down for further 'googling'.

If anythign your brain freezes halfway through the conversation concerning your breast and its seven centimeter growth and takes a wander down panic distraction lane, into a field of blissful ignorance only to be brought back to earth with a thump when all these hidious words assault your eyes from your notebook pages, from the comfort of your own sitting room couch.

Information is key, I’m a pretty practical person, I need to be informed, then I can feel somewhat in control.

And for this, I need to feel in control.

Macmillan, Action Cancer, Cancer Health, Irish Cancer Foundation,

I don’t know where to start, so I open them all, one tab after another, I make myself a green tea, organic of course, and I begin to read. The hollow feeling in my stomach gets deeper and deeper, the words swim across the page and I start to feel the tears coming, silently and automatically they fall from my eyes, I don’t bother to brush them away, I don’t bother to blow my nose, I carry on reading.

The tears are for my life which has just changed dramatically and will never be the same again. They must come at some stage and I’m sure there will be many more times when I feel like this but for now, I continue to read. I read about my cancer and all the things that can, might and might not be affected by it. I read and ignore the salty tears because I don’t have time for them right now. I have cancer and need to learn about it, need to know about what is coming so I can prepare.

The internet is my friend and information is key. 

Toilet Duck

After the second consultation with my surgeon,  where she told me that they were waiting on test results and they knew nothing new (fat lot of good that does when I'm sitting in the chair across from you, hanging on your every word!), I received a bag full of books, booklets, leaflets, print outs. All showing hopeful, smiling people, representative of cancer survivors.

There were books on bookkeeping and cancer, hair care and cancer, telling your child about cancer, your partner and cancer; all sorts of books and printed shapes on stiff paper conveying messages about something awful that people go through the world over but should never, never, never happen to me.  The words would swim on the page in front of me, looping sentences of incomprehension, until I began to feel myself succumb to panic.

And then I gave myself a kick in the butt.

My logical brain took over.

I would make a list.
I like lists. Shopping lists, guest lists, present lists, to-do lists.

So for the first time, I was mentally making an unchartered list, a 'Cancer List'.

I tried in my head to call together all the things I knew about cancer. Conjecture, hearsay and rumour. That's all I had to go on. I didn't have a clue what I was doing. I still don't. But that didn't change the fact of it, I needed to make a list.

Pyjamas - for when I was in hospital. (I couldn't possibly go into hospital in my care bears t-shirt.)
New knickers - the ones I had were either too racy or too tatty for other patients to be exposed to!
Arnica - for perhaps more of a psychological uplift, so that I could feel that I had some control over things.
Baby wipes - for when I would be puking with my chemo.
A bucket from the shop - see above.
Toilet Duck - so i could clean my toilet for - see above.
A coloured mat - so I could put it in the bathroom, something soft and colourful for the times I am going to be spending hugging the toilet bowl and lying on the bathroom floor.

The first thing I did after my 96% news was to mentally make this 'coping list' as well as going out to the shop and spending a small fortune on buying completely organic food, as well as a big bag of hula hoops and a massive tub of ice-cream. The last two purchases were functional in themselves, I need to build up body fat as I will loose a lot of it when I start my treatment, so I tell myself as I tuck into a massive feast of chocolate and vanilla ice-cream.

Oh the joys of the mind, in its feeble attempt to justify our actions.

When I got home, I slowly unpacked my purchases and felt a little bit better, but I had one last thing to do.

I needed to clean my toilet.

I got up close and personal to that bad boy like never before. I scrubbed and scrubbed with an abandon akin to a French courtezan in the middle of an 18th century coronation ball.
I toilet ducked that toilet to within an inch of its life.

Why?

Because in my head, I had visions of me gripping that bowl in the throws of post chemo sickness, waves of which I would have no control over. But by god, if I was going to have to go through this awful experience then at least I can control that one small thing; the cleanliness of my toilet bowl.

Blog Virgin

I don't even have a twitter account. How can I manage to blog? Is that even a verb? To Blog!  I will write a bit, see what happens.

   Hello.
My name is Charlie.
I have cancer.
It's been one minute and twenty three seconds since I last thought about my cancer.

I've named it Fred. It lives in my breast and overnight it has changed my world.
At 28, I think about lots of things, work, friends, family, my boyfriend, holidays, fun, travel, sex, money, drugs, rock and roll; the usual. Not about cancer, sickness, chemotherapy, infertility, osteoporosis, positive, negative, tamoxofin; what do these words even mean. They are non existent in my vocabulary. Until almost three weeks ago.

I knew things were bad when the smiling nurse led my through the corridor passed the rooms, marked numbers 1 to 12, where the women seemed to be ferried in and out, at a constant consistent pace. Down the corridor.  Hang on a second - why am I going down the corridor?  Nursey saying something akin to outpatient small talk, something about the weather. I don't give a rats ass about the weather...why are we going further down the corridor, away from rooms 1 - 12.....?

When she opened the door and I saw the consultant and the single shiny posture torturous chair, the innocent lone box of tissues, one fresh white sheet of soft paper peaking from the box, I thought to myself; HOLY SHIT. A box of Kleenex. I think I'm in trouble.

Nine.
Six.

My day seemed to be filling up with numbers. 96% certain of cancer cells in a tiny needle which they had stuck in to my breast. That still leaves four percent right, four percent unaccounted for.

Perhaps they made a mistake?

They could have made a mistake.



They didn't.

I have cancer. But don't be ridiculous. I can't possibly have cancer.  Can I?