Three chemo sessions down- three to go.
Just when you think you have things sussed....I know not to eat for about twelve hours before my chemo, I know that anti sickness drugs dont work for me for the first 24 hours after my treatment. I know what songs are the best ones to hum in my head when they are pushing the drugs through the syringe. I know how many bucket bags to get ready for the puking sessions, I know what type of food to have pre-prepared in the fridge for the day after. I know how often to space out my steriods and anti sickness medicine, I know when my body is telling me its time to go for a snooze. I know all these things after three sessions and now just to mess with your head, they are going to change the drugs.
Docetaxol.
I'm almost more nervous than when I started with my first round of chemo. I'm terrified that its going to be worse, this Docetaxol. And I don't know if I can take any more 'worse'. Annoying thing is that it doesn't appear like I have a choice.
Anyway, just to keep things exciting, they did get worse even before I sat into the chair for chemo number four.
My traitorous expander decided that it wanted out, it chickened out of Docetaxol and decided that it wasn't having any of it. Antibiotics -round two- didn't seem to make any difference to the enormous swelling and redness, so a trip to the consultant seemed in order.
For my troubles I got lanced, literally and syringed in the boob! Though I have to say, my surgeon is entertaining.
She is a bit of an enigma. At the very first day I thought 'How Rude!', now I know that she is not the 'huggy type', nor is she the 'hold your hand tightly while you cry a little' type. Nor am I, so I get her.
She is the 'no nonsense, we have a job to do, let's kick cancer's butt' type or the 'don't be asking stupid questions about your hair falling out as this is the least of your worries....as you have cancer!' type. I think she rocks.
So thursday morning, I roll into clinic with a honker of a boob and a sinking feeling in my tummy. I know as soon as I show her, she will say five simple, terrifying words, 'IT HAS TO COME OUT!'. ARghhhhhhhhhh - if a person can use up all their shit luck in one go, then surely over the last six months that is me!
Anyway, I flash her a glimpse of traitor boob and of course she makes a distinctly negative kind of sucking noise with her teeth and utters words, not the words I would have expected. 'We will just take a look'....
You know when you sit in the dentist's chair and he is looming over you with a needle and smiling menacingly behind a soft baby blue mask, and he says these stupid words 'the injects is the worst bit, everything else is plain sailing'. The injection stings and you relax a bit but then, as he digs around in your mouth a few minutes later, ripping out old fillings or scraping out cavities and you, in your prone state are silently cursing him for the dirty rotten liar he is- because everything after the injection was downhill and only got worse!
So, my surgeon wants to take a look...is that good?...is that bad? will the expander stay? She barks at the nurse who is timidly standing by the door, her eyes darting left, right and centre, a shadow of petrification hanging over her. If she could, I know she would run from the room.
'Get a tray set up for me'. (order number one)
She legs it out of the room and comes crashing back in a moment later, implements rattling, packages of gauze and dressing rolling around the top of the trolley.
My surgeon comes back and curses, actually uses a bad word...I am stunned!
'Get half this shit off the trolley and set it up properly!'
Oh dear, I think my failed expander is causing my surgeon to have a bad day, as if its rejection is a personal affrontation to her skill. I understand, I take it a a personal affrontation to my body, the expander's weak will and wish to abandon me.
Baby nurse is replaced by older, wiser and more thick skinned substitute. Surgeon is mumbling what I imagine are profanities under her breath. I am lying there on the bed trying so hard not to laugh...my consultant cursing, the nurses scurrying.
Two minutes later, laughing is the last thing on my mind.
She comes in and says, 'Im going to inject you, its the worst bit and everything else after is ok', ha ha ha...oh ya, learn that from the dentist did you, I don't believe you, this bit is going to be easy.
Two lidocain injections later and I find I'm the one who is using all the bad language, a fine flowing string of bad words tumble from my lips. But its ok cause I know she doesnt mind, its my way of not crying and I think she gets that.
A little digging around and the prognosis is the same, its going to have to come out. Those five words. Damnation!
So when is surgery...next week, next monday perhaps, I'd like to go see my parents at the weekend, so perhaps we could schedule in something for Monday or Tuesday...ha ha ha...fat chance!
Emergency surgery list this evening! Panic - operation today. I need to pack, I don't have any clothes with me, I'm supposed to be meeting friends later, my boyfriend is in Austria with work, I don't have anyone to bring me to the hospital, my house mate is not home, what am I going to do, arghhhhhhhhhhhh panic!
I go quickly home to pack a bag and come back to the hospital, I am distraught all the way home. Three whole months of pain and discomfort, saline expansion sessions, painful bra wearing, redness, antibiotics, no sleeping on my tummy and what...all for nothing. STUPID EXPANDER. Im back to square one, almost minus square one.
I go home and pack a bag alone, I organise my things and make my way back to hospital alone, I sit on the emergency bed and wait, alone. And I go to surgery at half eight at night but Im not alone. My surgeon is there and I know she will look after me, I know that she has been working since early morning and has seen and helped many people that day, I know that she has probably missed dinner in trying to organise a slot for me in the emergency surgery list and I know that she is on my side and will do her very best to look after me.
I know that if any one says anything bad about her, they had better answer to me.
The next couple of days after the surgery I wonder, how does she do it? how does she manage to get such a big object out such a small opening, my new scar along the base of my one time breast, a perfect two inch line, delicate and discrete, as if nothing had ever happened.
Wednesday, 2 November 2011
Monday, 17 October 2011
Narrative Nipples and Extruding Expanders (this could get messy!)
How to Kill a Living Thing
Neglect it
Criticise it to its face
Say how it kills the light
Traps all the rubbish
Bores you with its green
Continually
Harden your heart
Then
Cut it down close
To the root as possible
Forget it
For a week or a month
Return with an axe
Split it with one blow
Insert a stone
To keep the wound wide open.
Eibhlin Nic Eochaidh.
I really like that poem, especially the last two lines. I understand what the poet is trying to say, like picking at a scab that is almost healed over. Not that I am healed yet, still a long way to go but you sometimes can't help but poke.
Three chemo sessions down, three to go. As my Dad keeps saying, you're half way there, at the top now, its all down hill from here, except that's not what it feels like. Yes, getting to the third session feels like a gigantic climbing spree, laden with bags of cement and wading through mud to get to the top of an almost impossible peak and now that I'm at the top, I somehow think that the next three sessions, the down hill bit, should be easier. But they will not be any easier, they will, each in its own right be as difficult as if never before experienced, when you find yourself reverting back to crawling on your hands and knees, an invertebrate all over again.
I think its the feeling of being cheated. The chemo, in three week cycles, the first week is like hell, a slow puking, constantly painful torture, the next week is hazy and sleepy and tired but less torturous, you feel by the end of the second week almost like your old self again. The third week you find yourself offering to cook dinner, go for a walk, embrace a physical activity and you practically skip down the street, feeling, apart from the shine off your bald head, like a normal person. Then, right when you're feeling on top of things, right when you feel like your proverbial mountain has been climbed and claimed, you get stuck...stuck with a big fat juicy needle full of crap and you revert right back to start all over again.
I felt a bit broken the last session, like I couldn't go on, not that you have a choice because life does that annoying habit, continues on, and like the poet, it returns with an axe and there are many stones stuck in the wound keeping it open but you have to keep going, going, going, till you reach the top and start descending. Eventually, you will get to rest and it will be over and you will look back and wonder how you did it.
Today I thought...I am so over this cancer business. I'm so over having no hair, so over puking, so over feeling tired all the time, I am so TOTALLY OVER this s**t! I want my hair to grow back and to start feeling energetic again, to be able to go for a run or a bike ride, spend a whole day awake and not have to go for a nap in the middle of a day like a terrible two year old! Mentally, I might be over this shiznit but unfortunately physically and medically I am not even near the end yet. And so I ate three muffins. Not at the same time....throughout the space of a couple of hours. They were home made and healthy and they did make me feel a little better.
Also, narrative nipple, well not in the plural, in the singular, is brilliant. www.narrativenipple.com - not that I am biased but its a great space for people to express themselves and listen to other people and to get it all off their chest, regardless of the size, shape or symmetry of that chest.
Speaking of which, my boob is misbehaving badly. My expander, with a life of its own, doesn't like its new home and in a moment of low white blood cells has decided that it wants to move....to move out...Now, naturally I'm not having any of that sort of business, so I have chastised it with horse tranquillizer antibiotics in the hopes that it will change its mind and decide to stay......watch this space for future potential unwanted surgery....oh the joys...never a dull moment!
Monday, 3 October 2011
I am Woman, hear me Roar (Squeak!)
She kneels down beside my chair and I can practically hear all ears hone in on our conversation. This is a very polite waiting area, no body is having a full blown conversation, all conversations are clipped, hushed tones if its something private, soft tones if your talking about the weather to your companion in an effort to make the time pass. Everyone seems sombre and delicately respectful of whispers.
I notice the ladies across from me stop their hushed conversation and a gentleman two spaces away turns his head from his newspaper, clearly, not much scandal happens in the chemo waiting room, so all ears are on us.
'You and I have the best hair cuts in the room', she says, smiling proudly down at me (I could of course argue the point with her in a very convincing manner but I just smile weakly, unsure). 'Well done,' she continues and rubs my arm in an over familiar manner, seemingly congratulating me on being bald. I can feel my face begin to get hot. She goes back to her seat and sits down and flashes me a two thumbs up. I cringe internally. As if it wasn't bad enough that I felt like the whole room was staring at me, now they actually are. I burrow my head back in to the useless magazine I was reading and I curse chemo for the hundredth time.
Later, some time later, I am tryng to chose something nice to wear for a coffee date with a friend who I hadn't seen in a while. I wanted to deflect from the fact that I don't have any hair, so I chose a bright red and white jumper, stripy, nautical....very fashionable. I put it on and look in the mirror. Ughhhh, my boobs don't match, one is big, one is small, they are also levelly uneven, one slightly up a bit, one slightly down a bit. I open my drawer and pull out the bolder holder that I bought for post surgery, it is plain and ugly and almost utilitarian. I sigh and think of all the lovely bras I have in my wardrobe. But this thing, which I hold in my hand, well, it does exactly what it says on the tin, it holds everything in place. So, awkwardly I put it on, having great difficulty in doing up the back of it, as my post surgery reach is not the best. Several struggling seconds later I am dressed, kinda.
I look in the mirror, red and white striped jumper, nautical....very fashionable, and my hat, which I need to keep my head warm, it woolly and has a big bobbly bit on top...I look like Where's Wally! ughhhhhhhhh........help....I need a post cancer diagnosis, chemo treatment makeover.....I cant fathom what could be done to make me look any better. At least I still have my eye brows for this session, I suppose you have to always find something to be thankful for.
I eye my massive collection of shoes....like all women, I have certain weaknesses, not many mind you...but when I have a weakness, I have it bad and shoes and I love each other, they call out to me sometimes when I'm walking down the street from the shop windows, saying...'Take me home, nice lady, I need a new home.' To which of course I can't resist. So, looking at that pile of high heels, I feel distaste. I couldn't be bothered with heels, who needs discomfort on top of already feeling uncomfortable, head is cold or itchy, boob is sore or misbehaving, chemo is making you feel nauseous or tired; the last thing you want to do is put on a pair of friggen high heels...least of all because you cant fit into any of your blasted clothes cause your either skinny as or bloated like a whale, so can never find anything nice to wear anyway. I give up and opt for a pair of jeans, which hang around my ass like those rappers you see on tv and I feel about seventy, giving out about the youth of today! I chose a pair of converse, flat, ugly, scruffy but ohhhh so comfortable shoes.
Later, in the cafe, after coffee and cake I start to fidget. I think my friend thinks I might have cooties, I excuse myself and go to the bathroom. Bolder holder is cutting off circulation to certain body parts and is beginning to dig an unsightly rim of red into my skin. Off...Off...DAmN contraption! I wriggle out of the blasted thing in the bathroom of the coffee shop....ahhhhhhhh, instant relief, only I never brought my handbag with me...so now I have bolder hold in my hand and no where to put it....I stuff it into the waste band of my jeans and hope that I make it back to our table in three easy strides without it floppen out onto the floor of the cafe.....MORTO!
I make it and quietly put it in to my handbag, whispering to my friend. She howls with laughter and causes everyone to turn around and stare at our table, as if things weren't bad enough. I glow beetroot red and we leave the cafe, me with sheepish abandon.
PICC line and would not travel, so here I was in the middle of my bedroom, grunting as if I was moving a piano up six flights of stairs solo, my supposed trusty vest top half wrapped around my head, my arms flung up in mock surrender and there is a knock on the door....Oh.....you have got to be kidding me. I had a mental image of me falling over, unable to get out of the vice grip of the vest top, alone in my bedroom, undiscovered for days on end...bit dramatic I know! Another knock on the door....oh for flip sake. I tugged and I pulled and I shuffled till I got one side undone and then awkwardly got out of the top, flung on a hoody and limped downstairs, expecting the boiler man. I opened the door and there was no body there....after all that effort!
So now, I've no hair, I have lost the will to live when it comes to wearing bras, I have abandoned the high heels, co-ordinating accessories for non existent outfits seems pointless, I feel about as feminine as a yorkie bar. I've not had a period in months, I have started reading literature on early menopause and I wonder is pickling my beetroot a good idea so early on in the year.....arghhhhh, I feel a million years old and completely disconnected from everything.
This is part of what happens on the cancer journey, you are stripped of all the things that you associate with being feminine. The prospect of being able to reproduce, the things which define you as a women in society...breasts, hair, heels, sexiness. Its all gone and is replaced, for me, with dressings over wounds, comfort over style, warmth over fashion, practicality over frivolity, survival over sexy. I'm still female, I'm still a woman but feel removed from it all, outside the conventions. As I sit on the couch watching reruns of Americas next top model I get a bit cross with society and how it has boxed us all, whether we like it or not, in to neat categories and I almost feel glad that I have no hair, glad that in a crowd peoples gaze drifts over me, discounting me, as insignificant, unworthy of notice, I feel glad...Almost.....almost.
Saturday, 24 September 2011
Take 2!
Two more days to go until my second chemotherapy session. I don't know if its a good thing or a bad thing to be prepared and know what's coming.
The basin in my room, a now permanent fixture beside my bed, is full of hair. I put it to one side and have been avoiding throwing it in the bin. It feels like binning a dead pet or something. Sentimentality can make fools of the best of us.
We decide to go to the sea.
But secretly, I have hatched a sub-plan to our little adventure.
No hat on today either and my head is cold but free. When we get out of the car, the wind is high and the clouds are low. A perfect sea day. There are many people on the boardwalk, many people with many things happening in their lives. I look at some of them, and feel envious. The only thing that seems to be happening in my life is a disease which is slowly and resolutely taking things over.
I put my hand in the pocket of my coat and check one last time.
All accounted for, 'Let's go right down to the waves', I demand. I half drag my boyfriend, slipping on the slime covered rocks and shells till we get to the edge. Waves, petite and frothy, tickle the shore, nudging pebbles, shells and strings of seaweed back along the beach. I, of course, would prefer hurricane spawned gargantuan waves, beating into the coast for this particular task (a reflection of my mood) but I have to make do with what I have. We are alone on the edge of the sea and I take out the bag from my pocket.
Hair.
Lots of it, glossy and full.
I look at it a bit sheepishly, it seemed a good idea at the time, but now I'm not so sure. Bit by bit I pick it apart and let it float from my fingers on to the wind. It dances off, free.
In my Buddhist moment of rational, I hope that somewhere a bird will find some and line it's nest for the Winter, keeping it warm against the cold chills. In reality, it will probably drop in to the water, get soggy and matted and cling to the slimy, green rocks like an alien, sub species. Maybe a crab will stumble upon it and eat it or something. Somehow, I try to convince myself, my hair will go on to be a productive member of society and someone/thing else on this planet will benefit from my follical reduction.
I think the excess air buzzing around my cranium has affected my brain cells.
'Does it bother you that I don't go out with my wig on?' The question has been annoying me for days. He would never say anything but the way he automatically fixed my hat on my head at the beginning of our sea side walk makes me think he's trying to hide my baldy.
There is a moment's silence. I know the answer. I just need to hear it from him.
'Ya, a little.'
Oh well, at least we're being honest. I try to explain, in halting tones how I'm done with hiding, how I'm done with the prospect of this thing taking over my life. I will not let it dictate to me what I should wear, when I should hide, how I should pretend.
I agree not to turn up to his Christmas party commando or to the office on a Friday evening to pick him up without due 'Wig Consideration'. I do have some sense of decorum, but the gloves are off. All else is open war fare!
On Sunday night, my mother arrives. It's almost Chemo Day. Her arrival heralds anxiety and mini fear but I'm glad she is with me. I've decided to get a PICC line in and don't sleep a wink the night before, whether in fear or nervousness. Either way, I roll out of bed, in my usual undignified post mastectomy surgery manner and greet the day with less than enthusiasm.
Unfortunately I don't feel like a newbie this morning, I roll into the cancer ward and know exactly where I'm going. I know the ropes. What a sad thing, to be familiar with a cancer ward.
The staff are lovely, as always, as they stick needles in you and inflict pain. At least they have smiles on their faces.
I wait in chairs for a while. There's all sorts (except licorice! ha ha...see what I did there?) in the waiting area, mostly older, mostly women but all shapes and sizes, backgrounds, colours and most of them I notice with a sharp eye are wearing wigs. I appreciate them all and wonder at the amazing service the hairdressers provide. Most of the ladies look fabulous and you would never tell that their hair is not their own.
I get special cream on my arm for the PICC insertion and wonder at it, as it numbs the sensation along my upper arm. I lie on a bed and watch the ceiling flicker as they insert a plastic tube into my upper arm and pass it along up my shoulder and down to a major vein in my chest.
They lied.
They said it wouldn't hurt. I felt every minute of it.
When I was done my mother was waiting for me and I was the colour of a pale whitewashed sheet. I don't know who was more surprised.
After that ordeal, I get my chemo, quick this time, shoved in through my PICC line. No monkey business, no feeding the syringe through tiny veins, ever so slowly. I feel like crap and want to crawl into a hole and die.
My mother takes me home and puts me to bed.
After several days of feeling like rubbish things get a bit better. I get fresh food every day, home cooked and I must admit it makes me feel better. I struggle to the end of week one of chemo cycle, greener pastures are within reach.
The basin in my room, a now permanent fixture beside my bed, is full of hair. I put it to one side and have been avoiding throwing it in the bin. It feels like binning a dead pet or something. Sentimentality can make fools of the best of us.
We decide to go to the sea.
But secretly, I have hatched a sub-plan to our little adventure.
No hat on today either and my head is cold but free. When we get out of the car, the wind is high and the clouds are low. A perfect sea day. There are many people on the boardwalk, many people with many things happening in their lives. I look at some of them, and feel envious. The only thing that seems to be happening in my life is a disease which is slowly and resolutely taking things over.
I put my hand in the pocket of my coat and check one last time.
All accounted for, 'Let's go right down to the waves', I demand. I half drag my boyfriend, slipping on the slime covered rocks and shells till we get to the edge. Waves, petite and frothy, tickle the shore, nudging pebbles, shells and strings of seaweed back along the beach. I, of course, would prefer hurricane spawned gargantuan waves, beating into the coast for this particular task (a reflection of my mood) but I have to make do with what I have. We are alone on the edge of the sea and I take out the bag from my pocket.
Hair.
Lots of it, glossy and full.
I look at it a bit sheepishly, it seemed a good idea at the time, but now I'm not so sure. Bit by bit I pick it apart and let it float from my fingers on to the wind. It dances off, free.
In my Buddhist moment of rational, I hope that somewhere a bird will find some and line it's nest for the Winter, keeping it warm against the cold chills. In reality, it will probably drop in to the water, get soggy and matted and cling to the slimy, green rocks like an alien, sub species. Maybe a crab will stumble upon it and eat it or something. Somehow, I try to convince myself, my hair will go on to be a productive member of society and someone/thing else on this planet will benefit from my follical reduction.
I think the excess air buzzing around my cranium has affected my brain cells.
'Does it bother you that I don't go out with my wig on?' The question has been annoying me for days. He would never say anything but the way he automatically fixed my hat on my head at the beginning of our sea side walk makes me think he's trying to hide my baldy.
There is a moment's silence. I know the answer. I just need to hear it from him.
'Ya, a little.'
Oh well, at least we're being honest. I try to explain, in halting tones how I'm done with hiding, how I'm done with the prospect of this thing taking over my life. I will not let it dictate to me what I should wear, when I should hide, how I should pretend.
I agree not to turn up to his Christmas party commando or to the office on a Friday evening to pick him up without due 'Wig Consideration'. I do have some sense of decorum, but the gloves are off. All else is open war fare!
On Sunday night, my mother arrives. It's almost Chemo Day. Her arrival heralds anxiety and mini fear but I'm glad she is with me. I've decided to get a PICC line in and don't sleep a wink the night before, whether in fear or nervousness. Either way, I roll out of bed, in my usual undignified post mastectomy surgery manner and greet the day with less than enthusiasm.
Unfortunately I don't feel like a newbie this morning, I roll into the cancer ward and know exactly where I'm going. I know the ropes. What a sad thing, to be familiar with a cancer ward.
The staff are lovely, as always, as they stick needles in you and inflict pain. At least they have smiles on their faces.
I wait in chairs for a while. There's all sorts (except licorice! ha ha...see what I did there?) in the waiting area, mostly older, mostly women but all shapes and sizes, backgrounds, colours and most of them I notice with a sharp eye are wearing wigs. I appreciate them all and wonder at the amazing service the hairdressers provide. Most of the ladies look fabulous and you would never tell that their hair is not their own.
I get special cream on my arm for the PICC insertion and wonder at it, as it numbs the sensation along my upper arm. I lie on a bed and watch the ceiling flicker as they insert a plastic tube into my upper arm and pass it along up my shoulder and down to a major vein in my chest.
They lied.
They said it wouldn't hurt. I felt every minute of it.
When I was done my mother was waiting for me and I was the colour of a pale whitewashed sheet. I don't know who was more surprised.
After that ordeal, I get my chemo, quick this time, shoved in through my PICC line. No monkey business, no feeding the syringe through tiny veins, ever so slowly. I feel like crap and want to crawl into a hole and die.
My mother takes me home and puts me to bed.
After several days of feeling like rubbish things get a bit better. I get fresh food every day, home cooked and I must admit it makes me feel better. I struggle to the end of week one of chemo cycle, greener pastures are within reach.
Thursday, 15 September 2011
A hair brain idea!
The hairdresser at the Cancer Centre said that my hair would begin to 'release' (fancy word for fall out in big, panicky chunks) around day 10-14 of my treatment. Those dates were engrained in my head. Day 10-14, Day 10-14, Day 10-14.
From day five onwards, after my chemotherapy, I check the pillow in the mornings and run my hands through my hair to count the folically challenged strands. Nothing to report.
Day six: nothing to report.
Day seven: nothing to report, and so on.
I begin to worry that maybe the chemo isn't working. I peer into the mirror in the mornings and look at my eyes brows. They are getting bigger, bushier, sprouting in all manner of directions - probably because I have given up on personal grooming. They are growing wild and free, in the knowledge that I've abandoned my tweezers and will not be on patrol any longer.
My mother and my aunt remind me that a friend of theirs went through chemotherapy and her hair only thinned a little, no great shedding episodes. Maybe it won't fall out, maybe I'll be lucky.
As the days go by and my head of hair is still in place, I think....maybe...just maybe. After a while, I give up and stop thinking about it.
Day 18, bleary eyed I yawn and roll out of bed, literally. My expander boob makes it hard for me to sit up in one easy motion, so in waking, I've mastered the art of rolling onto one side and pushing myself off into a crouching position, first thing in the AM. I look totally rediculous but am slowly learning not to care.
Today is my boyfriend's birthday and I have decided that I am going to take him for a birthday lunch. My nausea has receeded and I feel more confident in venturing to 'smelly' places, as long as the smells are clean, we should be ok. I decide on a healthy, country kitchen type, rustic restaurant, a place for ladies who lunch and business men, trying to impress potential clients. We will totally fit in with the locals!
I chose something nice to wear, with appropriate breast deflection. Nothing too tight, nothing too low, nothing which will accentuate the difference is sizes of my boobs and nothing that will make me uncomfortable. That is a surprisingly hard checklist for most women's wardrobes. I put on some make up and run my fingers through my short hair, fluffing it up, to give it an 'I've just rolled out of bed and have oh so sexy tosseled hair, because I'm super cool' kind of look. It fails miserably and looks like I've had a nest of crows roosting in my barnet! I ruffle it up some more and pull my fingers through it. A handful of hair comes undone. I can feel it peeling away from my skin, a very strange feeling. I look down at my hand, at the lump of hair tangled through my digits and I form a single syllable.
'O'.
I stare for a minute and don't really understand what's just happened and then I shake myself. What did I expect, I knew my hair was going to fall out. I chastise myself as my lower lip begins to tremble and my hands start to shake.
'Don't be rediculous'. I say, in my best stern parent voice.
'You knew your hair was going to fall out. This is not a big deal. It will grow back in a couple of months. You can't have actually though that you would get through this with a full head of hair.'
I move around the room quickly, depositing the handful of hair into the bin, gathering my bag, my keys, my boyfriend's present.
'It's not a big deal.' I keep telling myself. But it is. It's a massive deal. It's my hair, my annoying, misbehaving, never styles the way you want it to hair. My hair, on my head and it's all going to fall out. I shake my head again and set off. This is not going to ruin my day.
My boyfriend and I have a lovely meal, watching the ladies who lunch and the deal making and breaking business men, in expensive designer suits. We drink elderflower cordial and order our meal with a posh accent. The waitress eyes our jeans and designer less apparel. Clearly we are riff raff but we don't care. We even eat our meal with our elbows resting on the table and I lick my knife after the main course, to make sure I get all of the sauce.
I wonder if my hair has started 'releasing' all over my jumper and down my back on to the posh couch, in the posh restaurant. I put it out of my head and enjoy the rest of our lunch.
We then decide to go for a walk, down to the sea on a brisk cloudy day. I'm delighted to be energised enough to be able to go for a walk and I tell my boyfriend in the car as we drive to the sea that my hair has started falling out. I run my fingers through it and show him the handful of discarded locks. He uses a bad word. We are both very quiet.
'Well. At least we have another thing in common,' he says, 'We're both loosing our hair.' I smile out the window at the grey clouds.
When we get to the promenade, its brisk and cold and salty. The perfect Autumn weather for a walk by the sea. A heavy wind blows along and whips at my hair.
Oh no, the wind is going to blow all my hair off and I'll be patchy by the time our walk is over and I don't even have a scarf to cover my head! I panic, then give up. Feck it! Feck it all....I just want to go for a walk by the sea and not think about stupid cancer.
We survive the walk, my hair still in tact.
The next day, I've 'released' onto my pillow, strands and strands and strands of hair. How can there be so much after falling out and I still have so much left on my head? I don't want to touch it, brush it or wash it. It's like looking after a fragile, unstable animal. I don't want to aggrivate it, I don't want to touch it, or hassle it, in case it all just falls off, in a hissy fit.
I plan to go to the hairdressers after the weekend and ask her to shave it. I'm resolute and feel really determined about it. My boyfriend says 'Don't shave it, don't. It might just thin.' The only thing that is thin is believeing that that will actually happen.
The day is lovely and I put this whole business with my hair out of my mind. I go to the shop and then come back and sit at the front door in the sunshine, drinking some peppermint tea and reading the news paper. Absently, I run my fingers through my hair, forgetting that its mutinous. A handful of it comes undone. I shake it free and the wind catches it up, carrying it away on the light breeze. I do that a few more times until I'm convinced that I must have pulled out most of it. In a voyeuristic way, I can't help myself, like picking at a scab, I pull handful after handful of hair away and I fell disembodied from the whole experience.
The next day I hoover the house. There is hair everywhere. It's in the bathroom, on the floor in my room, on my pillow, on my clothes.
Right! That's it.
I ring my boyfriend.
'I need you to come over and bring your shaver.'
'No way. I'm not doing that. Wait and see what happens.'
I purse my lips and mentally count to ten. It's my bloody hair and I will do what I want with it. I'm the one who has to watch it fall out, day after day, hour after hour, forming a hairy coat over everthing, except my head, which is where I want the hair to be in the first place!
Calmly I speak. 'Either you bring over your shaver and help me do this or I'll do it on my own and make a total arse out of the job.'
He knows that tone. He has heard it before.
'Ok. I'll be over in a minute.'
I look in the mirror and am angry at Hair (as if it was a separate person, a life of its own). Angry at Hair for deserting me. Angry at Hair for being such a woss that it let chemo kick its arse, angry at Hair for getting every where, sticking to everything, causing a mess, reminding me every time I look somewhere and see a strand of Hair, on the counter top, in the sink, on my shoe, mutinous Hair, abandoning me! Well, I'll show Hair who's the boss.
My boyfriend arrives and we go upstairs and I kneel, contrite in front of him, my head over a basin to catch all the discarded strands.
'Should we say something?' he asks, 'like a prayer of something.'
I can't see him as my head is bent at the neck, waiting for the killer blow (shave) but I know he is mocking and I blindly reach out a hand and punch him half heartedly.
I smile and grit my teeth.
'Let's get this over with.'
The sound of the shaver starting up makes my heart skip a beat and suddenly I see whisps of hair, then bunches of dark glossy locks, then suddenly clumps of the stuff driffting past me, away from me, into a basin.
It's so final, so sad.
I say goodbye and kneel back on my haunch after the shaver falls silent. I run my hands through, well, through nothing, there is nothing there, just ruffles of stubble. I stand up and peak into the mirror.
Oh my god...Im bald!
Doh...of course Im bald. What did I expect, I've just shaven off my hair. I shake my head at my own sentimentality and reach for my wig.
It's a really nice one, sharp cut, a shoulder bob with sweeping fringe. It's really nice. I put it on and look good, if only my real hair was such good quality and always perfectly behaved. I like it.
But it's not mine. I take it off and fling it on the bed.
My boyfriend has to go, so I thank him for his help and say I'll see him later.
I go upstairs and choose something nice to wear. I'm very particular about what to wear this day. I check in the mirror and get a shock, oh my god, I'm bald...doh, obviously I don't have a very long term memory.
There's nobody home, so no one to see me stall at the front door, keys in hand, a little shakey. I take a breath and open the front door, stepping out. It's sunny and warm and I can feel the sunshine on my head, the prickly bits of stubble stand to attention. I lock the door and turn onto the street. Our neighbour from two doors up is out with her kids, she looks up and smiles and then freezes. 'Hi'.
I keep going, my heart thumping a little. At the end of the street I turn and head to the shops. I think I must be a masacist. Every time I walk past a dark shop window and glance in it I get a shock, oh my god, I'm bald!
I phone my boyfriend.
'Hello', he says.
'Hi. Just ringing to say I'm walking to the shop.' Feeling stupid now but had to ring someone to tell them what I'm doing, as if I need a little bit of moral support.
'What are you wearing on your head?' he asks, cautiously.
'Nothing!' I feel like giggling, as if I'm doing something naughty.
He pauses on the other end of the phone. 'Ok. Call me after and tell me how you get on.' I nod and hang up the phone, reassured that I'm completly off my trolley. Why could I not just put the wig on and be done with it. Because it's a lie, I feel like it's me hiding and I want to be free of this thing, not hiding from it all the time.
Some people stare. Some people don't. I keep my head up and walk calmly down the street. All the children stare, one little boy peeps around his mothers legs and tilts his head, looking at me quizzically, wondering about me. I wonder about me too sometimes.
I go all the way, to the furthest shop, to buy a lottery ticket (I'm feeling lucky!) and a newspaper and then I walk slowly and calmly home, enjoying the sunshine.
I get in the door of my house and close it gently behind me.
Phew. My hands are a bit shakey and I need a minute to calm down. That's done.
I survived. I pass the mirror in the hall and glance at it. OH MY GOD...Im bald! Doh!
It's going to take me a while to get used to my new look.
From day five onwards, after my chemotherapy, I check the pillow in the mornings and run my hands through my hair to count the folically challenged strands. Nothing to report.
Day six: nothing to report.
Day seven: nothing to report, and so on.
I begin to worry that maybe the chemo isn't working. I peer into the mirror in the mornings and look at my eyes brows. They are getting bigger, bushier, sprouting in all manner of directions - probably because I have given up on personal grooming. They are growing wild and free, in the knowledge that I've abandoned my tweezers and will not be on patrol any longer.
My mother and my aunt remind me that a friend of theirs went through chemotherapy and her hair only thinned a little, no great shedding episodes. Maybe it won't fall out, maybe I'll be lucky.
As the days go by and my head of hair is still in place, I think....maybe...just maybe. After a while, I give up and stop thinking about it.
Day 18, bleary eyed I yawn and roll out of bed, literally. My expander boob makes it hard for me to sit up in one easy motion, so in waking, I've mastered the art of rolling onto one side and pushing myself off into a crouching position, first thing in the AM. I look totally rediculous but am slowly learning not to care.
Today is my boyfriend's birthday and I have decided that I am going to take him for a birthday lunch. My nausea has receeded and I feel more confident in venturing to 'smelly' places, as long as the smells are clean, we should be ok. I decide on a healthy, country kitchen type, rustic restaurant, a place for ladies who lunch and business men, trying to impress potential clients. We will totally fit in with the locals!
I chose something nice to wear, with appropriate breast deflection. Nothing too tight, nothing too low, nothing which will accentuate the difference is sizes of my boobs and nothing that will make me uncomfortable. That is a surprisingly hard checklist for most women's wardrobes. I put on some make up and run my fingers through my short hair, fluffing it up, to give it an 'I've just rolled out of bed and have oh so sexy tosseled hair, because I'm super cool' kind of look. It fails miserably and looks like I've had a nest of crows roosting in my barnet! I ruffle it up some more and pull my fingers through it. A handful of hair comes undone. I can feel it peeling away from my skin, a very strange feeling. I look down at my hand, at the lump of hair tangled through my digits and I form a single syllable.
'O'.
I stare for a minute and don't really understand what's just happened and then I shake myself. What did I expect, I knew my hair was going to fall out. I chastise myself as my lower lip begins to tremble and my hands start to shake.
'Don't be rediculous'. I say, in my best stern parent voice.
'You knew your hair was going to fall out. This is not a big deal. It will grow back in a couple of months. You can't have actually though that you would get through this with a full head of hair.'
I move around the room quickly, depositing the handful of hair into the bin, gathering my bag, my keys, my boyfriend's present.
'It's not a big deal.' I keep telling myself. But it is. It's a massive deal. It's my hair, my annoying, misbehaving, never styles the way you want it to hair. My hair, on my head and it's all going to fall out. I shake my head again and set off. This is not going to ruin my day.
My boyfriend and I have a lovely meal, watching the ladies who lunch and the deal making and breaking business men, in expensive designer suits. We drink elderflower cordial and order our meal with a posh accent. The waitress eyes our jeans and designer less apparel. Clearly we are riff raff but we don't care. We even eat our meal with our elbows resting on the table and I lick my knife after the main course, to make sure I get all of the sauce.
I wonder if my hair has started 'releasing' all over my jumper and down my back on to the posh couch, in the posh restaurant. I put it out of my head and enjoy the rest of our lunch.
We then decide to go for a walk, down to the sea on a brisk cloudy day. I'm delighted to be energised enough to be able to go for a walk and I tell my boyfriend in the car as we drive to the sea that my hair has started falling out. I run my fingers through it and show him the handful of discarded locks. He uses a bad word. We are both very quiet.
'Well. At least we have another thing in common,' he says, 'We're both loosing our hair.' I smile out the window at the grey clouds.
When we get to the promenade, its brisk and cold and salty. The perfect Autumn weather for a walk by the sea. A heavy wind blows along and whips at my hair.
Oh no, the wind is going to blow all my hair off and I'll be patchy by the time our walk is over and I don't even have a scarf to cover my head! I panic, then give up. Feck it! Feck it all....I just want to go for a walk by the sea and not think about stupid cancer.
We survive the walk, my hair still in tact.
The next day, I've 'released' onto my pillow, strands and strands and strands of hair. How can there be so much after falling out and I still have so much left on my head? I don't want to touch it, brush it or wash it. It's like looking after a fragile, unstable animal. I don't want to aggrivate it, I don't want to touch it, or hassle it, in case it all just falls off, in a hissy fit.
I plan to go to the hairdressers after the weekend and ask her to shave it. I'm resolute and feel really determined about it. My boyfriend says 'Don't shave it, don't. It might just thin.' The only thing that is thin is believeing that that will actually happen.
The day is lovely and I put this whole business with my hair out of my mind. I go to the shop and then come back and sit at the front door in the sunshine, drinking some peppermint tea and reading the news paper. Absently, I run my fingers through my hair, forgetting that its mutinous. A handful of it comes undone. I shake it free and the wind catches it up, carrying it away on the light breeze. I do that a few more times until I'm convinced that I must have pulled out most of it. In a voyeuristic way, I can't help myself, like picking at a scab, I pull handful after handful of hair away and I fell disembodied from the whole experience.
The next day I hoover the house. There is hair everywhere. It's in the bathroom, on the floor in my room, on my pillow, on my clothes.
Right! That's it.
I ring my boyfriend.
'I need you to come over and bring your shaver.'
'No way. I'm not doing that. Wait and see what happens.'
I purse my lips and mentally count to ten. It's my bloody hair and I will do what I want with it. I'm the one who has to watch it fall out, day after day, hour after hour, forming a hairy coat over everthing, except my head, which is where I want the hair to be in the first place!
Calmly I speak. 'Either you bring over your shaver and help me do this or I'll do it on my own and make a total arse out of the job.'
He knows that tone. He has heard it before.
'Ok. I'll be over in a minute.'
I look in the mirror and am angry at Hair (as if it was a separate person, a life of its own). Angry at Hair for deserting me. Angry at Hair for being such a woss that it let chemo kick its arse, angry at Hair for getting every where, sticking to everything, causing a mess, reminding me every time I look somewhere and see a strand of Hair, on the counter top, in the sink, on my shoe, mutinous Hair, abandoning me! Well, I'll show Hair who's the boss.
My boyfriend arrives and we go upstairs and I kneel, contrite in front of him, my head over a basin to catch all the discarded strands.
'Should we say something?' he asks, 'like a prayer of something.'
I can't see him as my head is bent at the neck, waiting for the killer blow (shave) but I know he is mocking and I blindly reach out a hand and punch him half heartedly.
I smile and grit my teeth.
'Let's get this over with.'
The sound of the shaver starting up makes my heart skip a beat and suddenly I see whisps of hair, then bunches of dark glossy locks, then suddenly clumps of the stuff driffting past me, away from me, into a basin.
It's so final, so sad.
I say goodbye and kneel back on my haunch after the shaver falls silent. I run my hands through, well, through nothing, there is nothing there, just ruffles of stubble. I stand up and peak into the mirror.
Oh my god...Im bald!
Doh...of course Im bald. What did I expect, I've just shaven off my hair. I shake my head at my own sentimentality and reach for my wig.
It's a really nice one, sharp cut, a shoulder bob with sweeping fringe. It's really nice. I put it on and look good, if only my real hair was such good quality and always perfectly behaved. I like it.
But it's not mine. I take it off and fling it on the bed.
My boyfriend has to go, so I thank him for his help and say I'll see him later.
I go upstairs and choose something nice to wear. I'm very particular about what to wear this day. I check in the mirror and get a shock, oh my god, I'm bald...doh, obviously I don't have a very long term memory.
There's nobody home, so no one to see me stall at the front door, keys in hand, a little shakey. I take a breath and open the front door, stepping out. It's sunny and warm and I can feel the sunshine on my head, the prickly bits of stubble stand to attention. I lock the door and turn onto the street. Our neighbour from two doors up is out with her kids, she looks up and smiles and then freezes. 'Hi'.
I keep going, my heart thumping a little. At the end of the street I turn and head to the shops. I think I must be a masacist. Every time I walk past a dark shop window and glance in it I get a shock, oh my god, I'm bald!
I phone my boyfriend.
'Hello', he says.
'Hi. Just ringing to say I'm walking to the shop.' Feeling stupid now but had to ring someone to tell them what I'm doing, as if I need a little bit of moral support.
'What are you wearing on your head?' he asks, cautiously.
'Nothing!' I feel like giggling, as if I'm doing something naughty.
He pauses on the other end of the phone. 'Ok. Call me after and tell me how you get on.' I nod and hang up the phone, reassured that I'm completly off my trolley. Why could I not just put the wig on and be done with it. Because it's a lie, I feel like it's me hiding and I want to be free of this thing, not hiding from it all the time.
Some people stare. Some people don't. I keep my head up and walk calmly down the street. All the children stare, one little boy peeps around his mothers legs and tilts his head, looking at me quizzically, wondering about me. I wonder about me too sometimes.
I go all the way, to the furthest shop, to buy a lottery ticket (I'm feeling lucky!) and a newspaper and then I walk slowly and calmly home, enjoying the sunshine.
I get in the door of my house and close it gently behind me.
Phew. My hands are a bit shakey and I need a minute to calm down. That's done.
I survived. I pass the mirror in the hall and glance at it. OH MY GOD...Im bald! Doh!
It's going to take me a while to get used to my new look.
Saturday, 10 September 2011
The Nose Knows Best!
It's all about the nose at the moment.
After my adventure to the hospital, I spent two days basically lying in my bed, staring at the ceiling, too out of it to care about anything.
A tumble weed was blowing in the bathroom, next to my 'products' shelf. I hadn't cleansed, toned or moisturised in days. I felt like a scaley vagrant, unwashed and unclean. I hadn't washed my hair in days, though subconsciously, I was arguing with myself, that the less I washed it the less likely it was to fall out...perhaps.
I was hot. Sweaty and hot, unwashed, ungroomed, uncaring... I wanted to lie still and stare at the ceiling. I began to enjoy it, the various cracks in the plaster, the little discernible patterns that they make. But then my bladder kicked in. Insistant, constant and irritating. All the time, at any hour, I was forced to drag myself out of bed, to go the loo.
My bladder broke me in the end. I had to get up so often that I decided to venture downstairs and sit on the couch and stare out the window instead of at the ceiling.
I opened the door to the sitting room and shuffled in. My housemate was happily sitting on the floor, rugging! She is a craft genius and had decided to make her own rug, using a hesian sac and some wool. I took two steps into the room and greeted her.
'Hi, what you.....' My voice trails off.
What is that smell? Oh my god, the smell....
The smell of the chemically covered, stale coffee hessian sack makes me want to vomit. I skirt into the kitchen, breath held, apologising to my house mate and made a quick peanut butter sandwich and skirt back upstairs, shallow breathing all the time. I needed to be in my smell free room, and near the bucket which had taken pride of place, right next to my bed.
At night time, I need three t-shirts and a hot water bottle, as in the middle of the night, I sweat so much I have to change my t-shirt, move to the other side of the bed and plonk the hot water bottle in the sweaty patch, so it dries up. (gross, sorry!).
The next day was better, I get up and ventured downstairs, my nostrils at the ready. My boyfriend had wrapped the offending hessian sack in a black plastic bag and shoved it under the stairs. I tentatively test the air with my nose for smells and get the all clear. I brave it and ventured to watch an episode of 'True Blood' with my housemate. As I sit on the couch, I dutifully fulfill the doctors orders, knocking back two of the super antibiotics and settled down for an eyeful.
The room gets very hot. I start feeling uncomfortable. Oh dear, the room is now very cold. I think I'm going to be sick. I have to get upstairs to my room, to my bed, to my bucket. My ears start to ring.
I make it into bed and lay down, calming my irratic breath and heart beat. I don't feel good.
Two hours later I wake up. I think I might have passed out and then fallen asleep. These antibiotics are making me feel really strange. I reach blindly for the packet of and read the small print. They are used to treat a range of things, most notably Gonorrhea. The list of side effects are never ending. I reverently put them aside. Next time I take my dosage, I'll be more prepared, bucket at the ready.
Three days later... I feel pretty, oh so pretty, oh so pretty and witty and.....in much better form. I can go a whole day without puking, I can eat little and often without wanting to barf it all up. I have even been for another little adventure. This time, much more pleasant. Yesterday I went to the post box down the street, all on my own. When I left the house, I felt as if I was suffering from agraphobia, as step by step brought me futher away from the comfort of knowing I was close to my bed, my bucket, my panadol and my duvet. After about ten steps I began to enjoy the sunshine and the feel of the wind in my hair. (I guffed at the irony, I didn't know how long more I would have hair but it still felt nice).
Another day later, I agree to accompany my boyfriend to lunch, not that I will be eating anything but I will go with him and watch in fascination as he eats all manner of foods. I am confined to eating plain potatoes, bananas, rice cakes and peanut butter, anything else and I risk instant nausea.
We go to a restaurant and sit down. It's really hot and I take in a lungful of air, the smell of spicy food hits my stomach and unashamedly assaults it, until I feel the grip of a wave of nausea wash over me.
PANIC....we are in public, in a restaurant, and I'm going to puke, OH NO!
My boyfriend eyes me across the table. 'Are you ok? You look a bit green'. (Thanks dear!)
'No. I need to leave.' I tell him matter of factly.
'Do you want to sit outside?'
It's dull and grey and not very appealing but anything is better than sitting here.
'Yes, Yes. Let's sit outside.' You'd swear we were in a tropical sunshine island, such was the enthusiasm with which I barreled out the door and onto the chair in the lovely, clean, fresh, spice free air. A gentle clean breeze keeps all smells at bay.....heaven!
The waitress arrives and I apologies, clearly without thinking what I was saying.
'Sorry, we decided to sit outside as I couldn't take the smell.'
'Excuse me? Our restaurant does not smell.' She looks at me with complete idignation.
Oh no, my brain is on a go slow.
'No, no, sorry, I didn't mean it smelt bad, it was just the smell of the spices.' Her face has turned stoney. I'm trying really hard not to laugh.
'Do you have peppermint tea,' I enquire.
'No. We just have ordinary tea.'
'Ok'.
'Would you like a cup then?'
'Um, no thanks.' Ordinary tea right now is akin to Satan and would make me sick, there and then. The prospect of drinking a cup was like suggesting drinking a cup of boiled dishcloth water.
The waitress rolls her eyes and stalks back into the restaurant, no doubt to tell the kitchen staff to spit in my boyfriend's meal.
He looks at me across the table and we laugh uncontrollably at the absurdity of the situation.
Oh, it's so nice to be out of the house, sitting, talking, feeling normal.
A woman comes out and sits at the table next to us. She smiles in our direction and lights up a cigarette. The smell wafts over to me.
I turn green and clasp my scarf to my face.
So much for a light lunch.
Nose knows best and if you're smart and undergoing chemo, you will pay attention to it. Only five more sessions of chemo to go. I better invest in some clothes pegs, so I can leave the house!
After my adventure to the hospital, I spent two days basically lying in my bed, staring at the ceiling, too out of it to care about anything.
A tumble weed was blowing in the bathroom, next to my 'products' shelf. I hadn't cleansed, toned or moisturised in days. I felt like a scaley vagrant, unwashed and unclean. I hadn't washed my hair in days, though subconsciously, I was arguing with myself, that the less I washed it the less likely it was to fall out...perhaps.
I was hot. Sweaty and hot, unwashed, ungroomed, uncaring... I wanted to lie still and stare at the ceiling. I began to enjoy it, the various cracks in the plaster, the little discernible patterns that they make. But then my bladder kicked in. Insistant, constant and irritating. All the time, at any hour, I was forced to drag myself out of bed, to go the loo.
My bladder broke me in the end. I had to get up so often that I decided to venture downstairs and sit on the couch and stare out the window instead of at the ceiling.
I opened the door to the sitting room and shuffled in. My housemate was happily sitting on the floor, rugging! She is a craft genius and had decided to make her own rug, using a hesian sac and some wool. I took two steps into the room and greeted her.
'Hi, what you.....' My voice trails off.
What is that smell? Oh my god, the smell....
The smell of the chemically covered, stale coffee hessian sack makes me want to vomit. I skirt into the kitchen, breath held, apologising to my house mate and made a quick peanut butter sandwich and skirt back upstairs, shallow breathing all the time. I needed to be in my smell free room, and near the bucket which had taken pride of place, right next to my bed.
At night time, I need three t-shirts and a hot water bottle, as in the middle of the night, I sweat so much I have to change my t-shirt, move to the other side of the bed and plonk the hot water bottle in the sweaty patch, so it dries up. (gross, sorry!).
The next day was better, I get up and ventured downstairs, my nostrils at the ready. My boyfriend had wrapped the offending hessian sack in a black plastic bag and shoved it under the stairs. I tentatively test the air with my nose for smells and get the all clear. I brave it and ventured to watch an episode of 'True Blood' with my housemate. As I sit on the couch, I dutifully fulfill the doctors orders, knocking back two of the super antibiotics and settled down for an eyeful.
The room gets very hot. I start feeling uncomfortable. Oh dear, the room is now very cold. I think I'm going to be sick. I have to get upstairs to my room, to my bed, to my bucket. My ears start to ring.
I make it into bed and lay down, calming my irratic breath and heart beat. I don't feel good.
Two hours later I wake up. I think I might have passed out and then fallen asleep. These antibiotics are making me feel really strange. I reach blindly for the packet of and read the small print. They are used to treat a range of things, most notably Gonorrhea. The list of side effects are never ending. I reverently put them aside. Next time I take my dosage, I'll be more prepared, bucket at the ready.
Three days later... I feel pretty, oh so pretty, oh so pretty and witty and.....in much better form. I can go a whole day without puking, I can eat little and often without wanting to barf it all up. I have even been for another little adventure. This time, much more pleasant. Yesterday I went to the post box down the street, all on my own. When I left the house, I felt as if I was suffering from agraphobia, as step by step brought me futher away from the comfort of knowing I was close to my bed, my bucket, my panadol and my duvet. After about ten steps I began to enjoy the sunshine and the feel of the wind in my hair. (I guffed at the irony, I didn't know how long more I would have hair but it still felt nice).
Another day later, I agree to accompany my boyfriend to lunch, not that I will be eating anything but I will go with him and watch in fascination as he eats all manner of foods. I am confined to eating plain potatoes, bananas, rice cakes and peanut butter, anything else and I risk instant nausea.
We go to a restaurant and sit down. It's really hot and I take in a lungful of air, the smell of spicy food hits my stomach and unashamedly assaults it, until I feel the grip of a wave of nausea wash over me.
PANIC....we are in public, in a restaurant, and I'm going to puke, OH NO!
My boyfriend eyes me across the table. 'Are you ok? You look a bit green'. (Thanks dear!)
'No. I need to leave.' I tell him matter of factly.
'Do you want to sit outside?'
It's dull and grey and not very appealing but anything is better than sitting here.
'Yes, Yes. Let's sit outside.' You'd swear we were in a tropical sunshine island, such was the enthusiasm with which I barreled out the door and onto the chair in the lovely, clean, fresh, spice free air. A gentle clean breeze keeps all smells at bay.....heaven!
The waitress arrives and I apologies, clearly without thinking what I was saying.
'Sorry, we decided to sit outside as I couldn't take the smell.'
'Excuse me? Our restaurant does not smell.' She looks at me with complete idignation.
Oh no, my brain is on a go slow.
'No, no, sorry, I didn't mean it smelt bad, it was just the smell of the spices.' Her face has turned stoney. I'm trying really hard not to laugh.
'Do you have peppermint tea,' I enquire.
'No. We just have ordinary tea.'
'Ok'.
'Would you like a cup then?'
'Um, no thanks.' Ordinary tea right now is akin to Satan and would make me sick, there and then. The prospect of drinking a cup was like suggesting drinking a cup of boiled dishcloth water.
The waitress rolls her eyes and stalks back into the restaurant, no doubt to tell the kitchen staff to spit in my boyfriend's meal.
He looks at me across the table and we laugh uncontrollably at the absurdity of the situation.
Oh, it's so nice to be out of the house, sitting, talking, feeling normal.
A woman comes out and sits at the table next to us. She smiles in our direction and lights up a cigarette. The smell wafts over to me.
I turn green and clasp my scarf to my face.
So much for a light lunch.
Nose knows best and if you're smart and undergoing chemo, you will pay attention to it. Only five more sessions of chemo to go. I better invest in some clothes pegs, so I can leave the house!
Tuesday, 6 September 2011
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.
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.
Subscribe to:
Posts (Atom)