Anti sickness my eyeball!

Dance in my pants anti-sickness (aka nettle knickers) was about as useful as a paper umbrella.

I woke from my snooze, disoriented but feeling ok. Tentatively, I did a mental inventory, everything seemed to be in working order, none of my organs had spontaneously melted away due to the chemo cocktail.

I even felt brave enough to have some tea and toast.

I was walking around as if a war mine was encased within me, prised and ready to go off at the slightest jolt. My stomach lurching at every step.

I have small snacks, like advised and drink water. These anti-sickness tablets are working. Ok, so I feel nausious but I'm not sick. My heart goes out to my brothers girlfriend, five months of this...constant morning sickness. Yet another level of new found respect for new mums.

As the evening light fades and the curtains are closed, I settle down on the couch for the night, thinking 'maybe this won't be too bad'.

An hour later, I cling to my old friend, the toilet bowl for dear life and hurl up food which I recognise from two days ago.

An hour after that and I'm still regurgitating until there is nothing left.

An hour after that, incomprehendibly, I continue to throw up, phantom puke as there is absolutely nothing left in my stomach.

When its all gone, I kneel back on my heels and feel better, no nausea, no sickness, nothing in my stomach, just empty.

I float off to sleep like a weak kitten, dreaming of monsters - cups of terrifying tea and plates of tretcherous toast.

The following morning I eyeball the packet of anti sickness tablets given to me and wonder.
However, like a good patient, I do as I'm told and knock back two of the things before rising from bed.

Three days of nausea follow, small meals when my stomach is settled, more nausea, intermittant puking and general feeling like warmed up refuse.

I have limited my diet, it seems. My internal diet regieme organiser has dictated that I will feel ill at the prospect of drinking tea, anything with sugar will make me quiver in my boots, if it comes in a tin - confine it to the bin, if it comes in a packet, wrapping, cardboard, any packaging at all actually....then it will make me feel nausious.

Spuds.  It turns out I love spuds, with a tiny bit of butter, mashed up with a pinch of salt! Peppermint tea is the only tea I can stomach. Fruit and veg are ok, as long as they are not really strong flavours (onions are an absolutle no no!) and wholemeal brown bread.

Oh, and peanut butter. And 'C'est ca!' That's it. The limit of my diet. But if that is what it takes to keep from feeling nausious, then that's fine by me.


Day four and I feel semi human.

Day five and I can't really manage to get out of bed. I lie there with my eyes open staring at the wall, willing some energy to spread into my limbs. When its time to use the loo, it takes every ounce of energy to get moving. I wonder if this is the low cell day. I crawl under my duvet and sleep. Man, it's hot. I check my temp, 37.9. Not 38 so I stop panicking and go back to sleep.

Day six and I've had an adventure. I've moved all the way from the bedroom to the sofa downstairs and managed to sit up and have a twenty minute conversation with my friend. My boyfriend comes over and we watch a film. Its hot. Hot. HOT! 39.1 degrees hot to be precise.
I take my temperature again. Then do it with another thermometer, just to be sure.

I have a little argument with myself, should I call the helpline (strict instruction.....if your temperature goes over 38 degrees you need to call us). Yes, yes, I argue with myself, but I've been wrapped up in a blanket, stealing my boyfriend's body heat, it's night time, they will be busy, I feel fine, apart from temperature. Round and round I go in my head, trying to argue the pros and cons out until my boyfriend places the phone in my hand and practically pushes the buttons for me.

Hello, I say brightly, trying to convey a mental picture of health and wellbeing, I have a bit of a temperature and was just checking in.

Forty minutes later and a referal from the chemo helpline, I'm ushered to Accident and Emergency. I'm sitting in front of a nurse cursing most foul under my breath as she pathetically tries to get blood from my stubborn veins. Two attempts later and she gives up, saying she is phoning someone from oncology.

I'm exhausted. I lay down on a bed/gurney thing in a theater space. They put me in here, away from the ruccus of Sunday night A and E patients. I am thankful. My boyfriend perches awkwardly on the most uncomfortable looking chair. If they had designed it in the shape of a spike it might have been easier to sit on. His long legs jut out from it at terribly awkward angles. I keep apologising. I'm so sorry for all this hassle, such a pain for you to have to be in A and E with me, so sorry. I think I pass out as next thing I know a hairy homeless man is standing over me about to rob me.

I sit bolt upright, a rush of blood to my head.

What is going on?

'Hi, I'm Doctor Hanley'.

huh?

He is about my age, has a massive head of floppy hair and a beard to match, a pair of cord pants and scruffy skater shoes. Mental, I chastise myself for judging a book by its cover. He is quiet and gentle and attentive and asks a million questions, most of which I answer no. Questions along the lines of ....'Have you ever....
had diabetes
a stroke
heart palpitation
alergies
mumbo jumbo
pink elephants in tu tus
a massive yellow bunny rabbit living in your cardigan sleeve....

no, no, no, no, no, no, yes (but only for a couple of weeks till he could find a new place to live!)


I felt like shouting at him, I'm perfectly healthy, Ive never been sick in my life, never been to A and E, never taken a sick leave from work, never even had the flu...I'm PERFECTLY HealthY.

Apart from the fact that I have cancer!

I answer his questions. He draws blood, successfully, first time. I resolutely decide - forget this sticking me with needles every five minutes and chasing after terrible veins, I'm getting a PICC line.

Chest xray, echo, bloods, urine, listened to heart, take my pulse : four hours later he gives me a cautionary warning, takes these antibiotics, the complete course and keep an eye on your temperature. You can go home (HOME....the magic word. I refrain from doing a high five and keep my face a mask of calm) but you have to be sensible. Any change or chest or stomach pain, you need to call us.

Yes. Yes. Yes.

I nod my head obediently. Anything you say.

I just want to go home.

F :) :) K FEC!

Chemo Day.

Or more precisely, night before chemo day and I'm rolling around in my bed with the worst period cramps and all I can think of is 'Give ME a break! This is the worst timing.'

4 am - one panadol later and I'm finally asleep.

7.30 am - I feel like pestilence, with a bad hair day. (Side bar, I went to the cancer support centre and asked the hairdresser for a hair cut, which she spent 45 minutes doing and it turned out great. I felt a bit bad, as in approximately 10 days my hair is going to fall out and I'll have to just go straight back in there for her to shave it off.)

Anyway, as is always the case, when you are on second day of a new hair cut, you wake up in the morning and it looks like a large tongued cow snuck into your room in the middle of the night and took to sucking on your new 'Do' for hours on end, till its just at the right level of horrendous.

I stumble out of bed and in an effort to remain calm I drink a cup of warm water with lemon and do some gentle yoga, hoping it makes a difference.  But I'm as antsy as anything and to make matters worse - I have THE most GIGANTIC right breast! I silently wail at the absurdity of the situation.

Clearly my brain or hormones have not realised that I have had a mastectomy (did they not receive the memo) and I have swollen menstrual boobs except the expander boob has swollen to twice its size and far outdone my other, normal boob.

I contemplate putting on a support bra to strap it in but give up, being completely lopsided (physically and mentally) on today of all days is the least of my worries.

When I get to the car park of the hospital I feel like being unwell, even before I start but I get out of the car and hobble to the cancer suite. Unlike my pre-assessment, when I went in and was confronted with being the new kid on the block (kid being the word, as I was, by far the youngest person there), I had more of an idea what I was doing and when my disc buzzer went off I resolutely trotted off down to the treatment wing, my boyfriend in tow.

Lovely comfy chairs, reclining, TV screen, nice view out the window, friendly staff - like any of that was making a jot of difference. My heart was trying to climb out of my chest and do a runner on me and my hormones were rebelling. I was beginning to tear up and I was silently praying, oh no, oh no, please not now, I can't break into sniveling sobs now, I need to get through this as coherently as possible. I bit my lip and tried to distract myself from the oncoming tears and turned my attention to my poor boyfriend, who was slowly edging his seat nearer to me, as the look of panic, fear and teary terror flitted across my face. He started talking about paint for the walls of his new house. A conversation ensued about magnolia verses white.

The most boring, uninteresting but panic distracting conversation I've had in a while.

The nurse arrived with a tray, a rather large tray, with a rather large array of injections. Gulp.
She turns over my arm and grins at me, 'First Day?'

I nod my head.

'Good, lets hope we can get some juicy veins this morning'.

Juicy veins...oh no!

They were pathetic, tiny skinny wimpy veins and I had to immerse my arm in warm water to try and get them to wake up. Eventually the needle, after a couple of attempts, struck something and the pumping of toxins began.

F is for..
Not sure. Flora bore alice or something like that (Fluorauracil). White, harmless looking, side effects: sore mouth, ulcers, loss of taste, lower resistance to infection.

E is for....
Not sure. Epic rubies or something along those lines (Epirubicin). Ruby red, as the name suggests, side effects: hair loss, nausea, vomiting, lower resistance to infection.

C is for...
Not sure. Cyclopse hiding (Cyclophosphamide). White, innocuous, side effects: lower resistance to infection.

Five syringes in total, slowly drip, drip, dripped through, with saline as a chaser. I think I would have preferred to pump 100% vodka through my veins than the cocktail of choice which the nurse charmingly gave me.

My thin, puny vein stayed triumphant till the last, only two small syringes of anti-sickness drugs to go.

The holy grail for cancer patients, anti sickness drugs. They looked pretty harmless to me.
The nurse was serious for a minute, eye balling me across the drip line and her blue gloved hands.
'Side effects..', she says.

Oh holy....not more side effects.

If I had a list for all the side effects I was going to be subjected to it would be as long as the bayeux tapestry.

I concentrated on her words completely, dreading what was coming.

'Have you ever sat on a bed of nettles with no underwear on?' she asked me calmly.

My brain froze at the mental image, tying to decipher if I had misheard her words.

'Ummm, no.' I responded meekly.

'Well that is what one patient described this as. Not everyone gets it and it comes on after about thirty seconds and only last for about 30 seconds.'

I look at her aghast as she slowly pushed the small vial of clear fluids into my vein.

I tense up, my nether regions alert, waiting for nettle knickers.

Nothing.

Phew.

She takes out the syringe and loads up a different fluid for anti sickness.

I relax.

OH OH...Dance in my pants, DANCE IN MY PANTS. Ouch, EEeeeekkkkkkk! I shuffle my bum around in the seat. My boyfriend looks at me, the nurse looks at me, my eyes are bulging.
'Nettles?' asks the nurse.
'mmmm hmmmm', I reply. Unsure if its wise for me to speak.

'One woman liked it so much', she confides in me, 'that she asked for a second syringe'.

I baulk at the notion. One session of nettle knickers is enough for me, thank you very much.

One hour forty five minutes later and my first chemo session is over.

I sigh with relief. I feel a bit overwhelmed when I come out into the brightness of the day and think, I need a snooze.

I go home and wait for whatever is to come next and in the comfort of my bed I cradle my traitorous gargantuan boob.

The cheek of it, to misbehave on this of all days.

I drift off to sleep and in the back of my head, I know its only a matter of time till FEC comes a knocken'.

A Ribbon of Red Amongst the Constant Black

My anger.
It is immensely small, tightly loose in the pit of me.
A billowing, whipping ribbon of red amongst the constant black.
I want to unleash it into the tornado wind and watch it whirl into a frenzy.
Bang the dustbin lids of it together in the peace of morning silence.
Matador its bull horns around the arena, to the shrieking of the crowd, for all to see,
Smear it in people's faces in the quiet square of a Parisian banlieue, causing a spectacle.
I want it mounted on the wall of a large country manor, its devil horns a reminder to those who poach.
I want its nose pressed to platitudes, good wishes and well meaning, snorting contempt.
The roar of it, as it locomotives its way through a country dale, breaking the peace.
My ribbon of red amongst the constant black,
Holler and pierce the quiet of your lives, so you know. So you know!
But you'll never know, what it is to surrender the vein to the needle, to the Cancer Master.

Two aunties, three breasts and an expander.

In my last week of relative freedom before my chemotherapy starts, (five days before I meet my Oncology team, gulp!) I thought, in my wound healing state, it would be a good idea to embark on a trip to the capital to do a spot of babysitting for my brother.

In my pre-ER positive mind frame, this was a fantastic idea. Post cancer diagnosis and freak out over fertility, I'm now not so sure.

When I get to the capital and sit on the cross city commuter train, surrounded by a returning school tour of ten to twelve year olds, the irony was not lost on me.  They chatter animatedly to each other.

I silently begin to hyperventilate.

I love my nephew, he is one of many nieces and nephews. I think I will be 'using' them a lot more in the future, in my potentially childless state.

In the apartment, with my sister as co-babysitter (well, chief babysitter, I have to admit), I watch a snot nosed, round bellied two year old crash through the place, wreaking havoc in his wake. He decides to empty my handbag, item by precious item on the table top. Then he decides to repack my hand bag, item by item, in carefree abandon, squishing all manner of things in to the bursting bag.

His vigour is catching.

***

Meal time - CHAOS!

'More', said in a tone of definite expectation, is his favourite word. He has a belly apendege to match his most ulilised expression.

He takes great pleasure in shoving pear, yogurt and fistfulls of grapes into his mouth. He even decided to join my sister and I for our meal; never one to say no to a new dining experience.

Popadums, rice, jalfrezi, naan bread and some tikka masala later, his eyes round and dilated, obstinately trying to remain open, sniveling tears of frustration as we put him into his cot, encased in the cutest pyjamas I've ever seen.

Silence.

With children, this is a rare occassion. Should we uncork a fine bodied red, feast on some grown up treats which allude the beast child...like nuts or hard sweets, forever denied to poor Jack. No, instead in a crazy notion of abondonment, we get into our jammies early, watch a half hour of television and collapse into bed.

11.30 pm - crying in his sleep, wakes me up.

2.00 am - I wake with a start, thinking I heard him, no, nothing, back to sleep.

3.00 am - I sit bolt upright in my bed, his crying waking me. My sister gets to him first, rubbing his back or doing something else important, I blindly, sleepily reach for his soother which is on the bedside locker, back to sleep.

6.00am -  Standing up in his cot, little fists clenching the bars of his prison, crying but his eyes are closed, so are mine in a short instant of time.

7.30 am - He is shuffling around in the cot, making strange noises but no crying - heaven - back to snooze land for me.

8.00 am - Holy Merciful......'What is that Smell?' I wail at my sister, who is prone beside me, potentially dead from toxic gases.  She has a cold which is thankfully affecting her nasal passage and has not yet been affected. I wait a few moments. There is no escaping the noxious smell...... Nappy changing time.

I make the coffee and breakfast, my sister does the honour of the nappy. I suppose having only one boob has its advantages some times.

Note to all those out there, Indian food and grapes do not make a happy nappy combination.

It's time for more food, I pick him up, gingerly balancing him on my good, unstitched side and think for a minute, this might never be me. I might never have babies of my own and I look at him and feel guilty.
Guilty because I don't feel a massive hole in my life, I don't feel unquenchable loss.

I panic and plop him into his highchair, bustling about the kitchen to get his breakfast.

I'm a terrible person. A terrible female person!

***

It takes more organising and team work to get him into his pram and out the door than it does to launch a small business.

I push the pram, badly down the corridor, colliding with the wall and corners on several occasions.  We carreer out the door and into the street on our way to the creche; a baby, two aunts, three breasts and one expander.

I feel empathy for new mothers, embarking on new experience, after new experience.
It may not be an experience I will ever have, as after this whole ordeal, I may need timeshare on my nieces and nephews, to feel that special feeling of love you get when you are with children.

For now, I must content myself with my own new experiences and try to get through them. What I learned today, is to concentrate on today and not think too much about tomorrow, you cannot plan and invariably, plans change.

Also, there is no power steering on buggies.....

Pathology, Panties and Petrol.

It's been a week since my operation. My boob is still massive, tight and swollen but now its size matches the other 'normal' breast.

It's the little victories that now matter the most, begin able to tie up my hair, being able to open a jar of jam with my right hand, stretching, not needing pain killers and then there is the stuff I miss, sleeping on my tummy, my nipple, my dance class, going for a run.

I even feel guilty listing the things I miss, I am so fortunate so far in all the things I can do.

I walk around now not wearing a bra. I would never go out without a bra before.

I think perhaps in loosing my boob, as replacement therapy, I have magically grown a pair of balls!

I perhaps will dare more.

My new boob still has the right shape, kind of. I was worried when I glanced down at my chest the day after my operation that it would be flat, as if plained away, a dip in the middle of my chest; vacant. But when I looked, it was flippen massive, bigger than before, swollen of course, but I gave a silent 'Yipeeeeeeeee', I still have cleavage.

Today is Pathology Day. Should I be excited or nervous, it's like the big unveil.

I've even bought new pants, in preparation. They are purple and pink, girl boxers, with a toothy hippo on it stating 'Peace, Love and Hipponess'. A bit naff, I know but I thought they were humourous.

So I don the panties and walk to the hospital, (wearing other clothes as well, of course) listening to Diva music to give me a bit of courage. There's nothing like a bit of Beyonce in preparation for pathology results.

The good thing about having Cancer is that they don't make you wait in chairs for too long. When the surgeon calls my name, I see a lot of women and some men, glance up. I have long hair and am fit and healthy looking and I have two breasts, this confuses them and you can see the look of puzzlement fret across the faces. If anything, I'm not the norm.

That too is evident in my pathology report.

I have to take small victories where ever I can get them.

It's 6cm in diameter (Little silent cheer - they said it was approximately 7cm, one less than expected).

It's grade III (No cheer for that as it's kind of shite).

Its ER positive (Again, no cheer).

Its PR positive (Two positives and not in a good way).

Nodal involvement 4/14 (Cheer, that's a good score, go on the lymph nodes, hearty warriors, holding out against marauding cancer cells, only 4 fell at the last hurdle).

It was close to the skin and the chest muscle. (Gulp)

I feel a squeeze of panic. The surgeon looks at me and says sternly, 'Forget this fertility business, my advice to you is to start your Chemo... NOW!' She is fierce, and would kick Beyonce's butt in an instant.

I nod my head and concede.

I had been mulling over the whole prospect of eggs and harvesting a great deal whilst sitting up in my hospital bed, draining into my three bottles and had silently and weakly admitted to myself that all I want to have to think about is getting better, not pushing out babies.

The eggs will have to wait. I can't think of anything but my cells at the moment.

The surgeon eye balls me from across the table.

'Yes. When do we start?' I try to sound proactive but the echo of my own false bravado sounds strange in my ears.

We talk dates and she tells me I will be booked in for my first expander session soon. She says that she has left some air in the expander.

I glance expectantly at my fake breast.

An appointment for saline solution, three weeks time.

I ask a question, which I know she hates, she seems adverse to questions, adverse to sharing too much information. I feel like I'm in school again, asking stupid questions but I go for it anyway.

'Does the air come out when you inject the saline?' I hold my breath, expecting a rebuke.

'It doesn't matter what you put in there, you could put petrol in and it wouldn't come out.' She gathers her papers up and exits in a flurry, attempting to arrange multiple appointment for me as she goes.

I sit for a minute and imagine myself hooked to the petrol pump at the local garage, filling my expander implant.

If anything can go in there, then maybe I'd prefer a nicer liquid.

Gin maybe?

If only.

Warning - When I Am an Old Woman I Shall Wear Purple

When I am an old woman, I shall wear purple
with a red hat that doesn't go, and doesn't suit me.
And I shall spend my pension on brandy and summer gloves
and satin candles, and say we've no money for butter.
I shall sit down on the pavement when I am tired
and gobble up samples in shops and press alarm bells
and run my stick along the public railings
and make up for the sobriety of my youth.
I shall go out in my slippers in the rain
and pick the flowers in other people's gardens
and learn to spit.

You can wear terrible shirts and grow more fat
and eat three pounds of sausages at a go
or only bread and pickles for a week
and hoard pens and pencils and beer nuts and things in boxes.

But now we must have clothes that keep us dry
and pay our rent and not swear in the street
and set a good example for children.
We must have friends to dinner and read the papers.
But maybe I ought to practice a little now?
So people who know me are not too shocked and surprised
When suddenly I am old, and start to wear purple.

                                                 Jennifer Joseph

I AM awake!

Am I? I'm not so sure. Maybe this whole messy business has been a dream after all.

I can hear the lady next door, a curtain's breath away, asking for a hot water bottle for her period pains. The nurse kindly agrees to fetch her one. Then a conversation, in muted tones, occurs between her and her doctor, in which she frantically asks after her baby, the tone of her voice raising an octave as panic begins to swell.

'What baby?' the doctor keeps asking.

The voiceless woman in the bed next door sounds in her sixties and has just come around from her anaesthetic.  There has been no baby for a long time in her life I imagine.

My eyes are still closed and I wonder if I was lucid or delirious post operation.

I firmly press my lips together, hoping that I have not said anything inappropriate in post surgery haze. Images of me having an episode of tourettes in the recovery ward flit through my head. I think I can feel my mouth twitch in an almost smile.

My head feels disembodied from the rest of me as I zone in and out to the voices around me. I try to do a mental inventory on my body parts.

Can I feel my breast, the place where my breast used to be. Is it painful?  Is it flat, is it hollow, is it dead?
I can't feel anything.

It is nothing.

I wonder at the importance of the whole thing, the minutia of my situation in the lives of these people around me, the lady in the bed next door, loudly sobbing for her baby, the nurse who I can feel standing at my bed side, reading my chart, the doctor, who's hushed voice I can hear at the end of my bed.

Yet to me, it is everything, it is the magpie of my life, the big C has pushed all other things which were once of importance out of the nest. Even in my haze, I know it is there. I close my already closed eyes on it all and drift back to sleep. Morphine is my friend.

I smile when I come around again, one of the nurses, who's friendly face I recognise is at the end of my bed, ready to wheel me back to my room.

I feel good, I feel awake, a little in control, of my speech at least.

They wheel me in to the lift, up three floors. Oh god, I think I'm going green, they wheel me down the corridor, another corridor, another lift, and some more corridors. I close my eyes, as I can't look at the large, florescent lights whizz by over my head without my stomach lurching.

Please stop, sometime soon. Dear god, how big is this hospital?
Another corridor, then safety. Stable ground, the final pit stop.

Ahhh.

My sister pops her head into my frame of vision.

'Hello', I smile, gooey.

Wow, morphine is good stuff.

'Where's my lipstick?'

She smiles.

I pass out into oblivion.

Oblivion is nice, I sometimes wish I could stay there.

When I wake up next time I feel a bit more human. My breast is bound and bandaged, it is huge. Firm and round. It is huge and I have drains. Three plastic tubes hanging from underneath my armpit, dripping into plastic bottles, which sit on the floor.

My stomach heaves a bit, I am not squeamish, so I reckon it's the post surgery blues. Or greens, as according to my sister, I'm a nice shade of.

The next twenty four hours are punctuated with blood pressure checks, drain checks, eating medication, pain killers, anti-inflammatory pills and antibiotics.

So far these last few days have been full of new experiences.

My next challenge.....a bed pan. I imagine this monstrosity of a thing coming towards me, but when the nurse whips it out from the trolley, it doesn't look too bad. A simple and all as it is, I'm slightly confused as to which end goes where.

To preserve my modest, which amuses me, considering I have been flashing my boobs at them all for the last thirty six hours, she pulls the sheets up around my legs, so it looks like a sort of tent on my bed.

I have performance anxiety.
I can't pee with her in the room.

She kindly offers to give me and my bed pan some alone time.

My muscles are a bit weird from the anaesthetic so it takes me a little bit longer than normal, I turn my attention to the telly, oh look, Harry Potter is on.

A nurse is standing at the door, about to wheel in the blood pressure machine. She stops mid sentence, her left eyebrow raised quizzically at my unusual position in the bed.

'You're on the bed pan, aren't you?'

'Ummm hhmmmm', I reply, trying desperately not to laugh.

Apologising profusely she scurries out of the room.

I turn back to Harry Potter.

I'm still peeing, slowly but surely.

My boyfriend stands at the door.

ARrrrggghhhhhhhhHHHH

'I'm on the bed pan', I bellow at him, startling him with the ferociousness of my response. He turns on his heels and exits the room with far more dignity than me, perched on top of my newest experience.

Please, please, please let me stable enough tomorrow to go to the toilet unaided, I think to myself.

It's the little things in life......