day four blues

it's day four, and it's a grind.
I think my limit for 24/7 caring is about three and a half days. is it wrong of me to be feeling so resentful?

after a couple of days of this I lose the power of speech, and if I do happen to answer the phone, or be required to converse - at school, or the supermarket - i'm unable.

it's impossible to not be forward planning - or forward stressing in many cases.

the thing is, we know this illness. this is chemo sick. we have run the course of the fatigue, dizziness, malaise, nausea, wandering pains, bruising, loss of spirit. we have weathered this storm and seen that it ends.

but what of later? what of the OTHER illness? how will I possibly sustain this role when it gets REALLY bad???

I've organised a babysitter/companion for a couple of hours tomorrow night, so I can have a break.  and grateful for the prospect, too.  it's good that there is enough predictability in this chemo regime that I can safely pop out for a few hours.

it's just so relentless. my other children go to school, and to sleep, and I get a break from them. my eldest dozes a bit during the day, and sleeps for about eight hours at night (though i'm aware of every thump and cough). for every minute that she is awake, I am on call. glasses of water, cups of tea, fresh fruit, cooked meals, remaking the bed, opening the window, taking away dirty tissues and dishes, massaging her feet, washing her clothes, keeping hot water bottles hot, dashing to town for supplies of her latest craving ----- the list is ENDLESS. I groaned a couple of months ago when her grandad sent her home with a doorbell to use in emergencies (the button is in her room and the ringer is in mine). it broke fairly soon after, but I've been so anxious some nights that I've thought I really need to replace it....

just when I think i'm getting my domestic chores in order, there's another demand to be met.  after days and nights of it I am so worn out and my patience is wearing thin.

but there is just nowhere to put these feelings. i'm not proud of feeling this resentment.  many's the time I've thought i'd do ANYTHING for this child, and now here's my chance. I have joked with her over many years, whenever she accused me of some awful deed in our past I would retort with : 'yeah, well you stole my youth so I think we might be nearly even'.  but who am I kidding? I have given this child my life. my entire, independent, adult life has been for and about this child. the others, too, of course, but ultimately her, because she has been with me every step of the way. she is my constant in a changing world. turning 40 this year I will have lived half of  my life as a mother.

even with the other two, who need me more than their big sister ever has, I project into a future without her and I feel rudderless. she's the one who has kept me on the straight and narrow. the one who demanded a certain way of life, certain luxuries, when I would have turned my back on all of society and it's conventions.

........

the real problem is that I am stuck at home, my only company an acutely ill teenager. i'm having all of these thoughts in my head and there's nowhere for them to go. I cannot burden her with them. no one comes over and I only leave for the briefest of mad dashes into town for supplies, or for the school run. I am alone with my thoughts FAR TOO MUCH......

I have just this very moment hit upon a new and fundamental understanding of my self.
deep within my psyche I believe that desire is a negative experience - my every experience of desire comes hand in hand with shame of some description. of all the things which I desire on a frequent basis - chocolate and red wine in my mouth; good and uncomplicated sex; chemical oblivion - they all seem somewhat.....inappropriate....there's this little voice in my mind, calling me names, labelling me for these thoughts of desire - greedy, hypocritical, slutty.

is it really so bad to desire, to want? I don't know....is this voice my catholic 'conscience', instilled in me from a very early age; a moral compass bestowed upon me by the one and only true God?

the Buddhists have something to say about desire, too, don't they? my understanding of Buddhism suggests that we are meant to somehow transcend desire.

mindfulness practice would have me notice the desire and then watch as it passes away....I must say, there are times when i'm quite happy to simply inhabit the space of desire, to feel how it feels within me physically - where I feel it, how it manifests in my body....

but then I also think, why am I here if not to have the fullest experience possible? I want to taste all the possible scenarios of human expression. I don't want to keep having the same feelings, thoughts and experiences, every day for my entire life. I want my experience to change, to constantly move and weave through all possible vistas.

and isn't desire just as instructive an emotion as, say, empathy? or joy? or even sadness? surely it's important that we have them all...

I've long ago accepted that I am, in fact, multi-faceted. I am a multidimensional being.

sometimes I hate. sometimes I envy. there are times when I have incredibly uncharitable thoughts about others. sometimes I loathe myself. at other times I love myself. sometimes I eat chips with flavouring on them. every now and then I actually see little fairies in the forest. sometimes I cry with wonder at the beauty of nature manifest in my children. I actually really like drinking herbal tea. I am happiest when I am dancing. and sometimes I want things that I cannot have.

but I refuse to accept that desire makes me a bad person. in the scheme of things, if my children are surviving this intense period of their lives, if my businesses are both thriving, my house is relatively clean and mostly warm, we have good food in our bellies and the washing up is done why can't I roll up a joint, pour a glass of red wine, break up some deliciously bitter dark chocolate and fantasise about good and uncomplicated sex??!!

It all seems ridiculous when I give it a bit of examination. it doesn't stand up to scrutiny.  how could desire be 'bad'?.......


so, there you have it. I hereby shake of the mantle of shame and accept my desires as blessings and as integral pieces of the whole.

thankyou for sharing this journey of self discovery with me......

.....just throwing it out into the ether....

 

in the end, which is more important - the head or the heart?

ruminations on the nature of struggling

today i confronted the fact that i am struggling. that i struggle......today i struggled.

the realisation came as i was driving my car back home, from a lightening trip into town for supplies and, i hoped, a momentary escape from a day which was really taxing my reserves of patience and fortitude.

i was hurrying to get back, swinging the car round the potholes and corners whilst simultaneously massaging my neck and shoulder ( i pulled a muscle - in the shower!), and thinking about what was waiting for me at home.....my youngest has a chest and a head FULL of snot, she is coughing and spluttering, her cheeks are aflame; she's a veritable germ factory.  my middle girl has been flushed, tired and tetchy since coming home from a brief trip away with friends, two days ago.  both small girls suffered a mysterious, short lived vomitting episode yesterday afternoon.

my eldest had chemo on thursday, and these days following treatment leave her severely immunocompromised.  she is perfect prey for any stray pathogen around, and there is a steady supply at my house at the moment.

the last couple of days have been incredibly wearing.  i have worried, about each child individually in her own personal illness.  i have worried about my own capacity to care for each of them, in their own individual way of needing me.  i have worried terribly about having them all here together, one big toxic milieu....but despite working through myriad scenarios in my mind, i couldn't see a way that i could nurture and nourish each and every one of them.....

......and then i put my neck out!!!

i reached the point this afternoon of needing supplies from town, and also needing to escape, however briefly, and i left the two youngest on the couch watching a movie, and the eldest snacking in the kitchen, and fled to the streets of nimbin.

while i did get coffee (hooray!) it was ultimately a very unfulfilling escape, as it was extremely short (i WORRIED about them) and i realised as soon as i got there that i was unfit for human consumption, and then proceeded to see about 15 people who could, and would, have got me out of my funk if only i could give them the time to do it.....

and as i drove home, i allowed myself the thought that this is struggling....

sometimes, the only thing which gets you through is the knowledge that that slowly grinding wheel of time will inevitably drag itself forward, and us along with it, and.......THIS TOO SHALL PASS.

i am grateful to my good friend and sister, who took the girls for a few hours later in the afternoon, and gave me some breathing space, some catch up time.....giving me an extra little shot of stamina which allowed me to build a fire for my family, cook up a delicious and nutritious meal which was enjoyed by all, and to read an extra long instalment of THE NEVER ENDING STORY by the fire before bed.

as i was blessed by another good friend and neighbour who visited yesterday evening - despite the vomit - to play with my kids while i cooked, and who later gave me a foot rub by the fire.

and, again, there are the gems amongst the shit...glimmering away slyly....waiting patiently to be noticed....

...hmmmm....seems this blog is turning into an oprah winfrey style gratitude journal.........!

grief trumps hope

well folks, i have a feeling its going to get a little raw and emotional on here tonight, so if you don't think you're up for that, tune out now.

on april 16th last year, i learned of the death of michael, my one big love, the father of my two little girls.  i last spoke to michael on the 11th, and until tonight, i believed that that was the night he died.

tonight, this evening, i was overcome by a blanketing, all encompassing storm of grief....a wrenching sadness which twisted my insides, stole my breath, consumed me....and i knew that this was michael's pain i was experiencing.

absenting myself mid dinner prep, i fled to the darkness and solitude of my bedroom, and gave myself over to the physical sensations of sadness and reflective pain as i pictured each of my loved ones and relived their shock and grief and absolute DISBELIEF of the reality of a world without michael.

i so nearly suffocated on the collective secretions of my nose, eyes and lungs as i struggled to breath through it. i'm already producing such copious amounts of snot due to having this flu.......anyway, i'm left feeling really cold and spent. i'd love a fire to curl up by.....

it's not a wager i will ever collect on, but i would put money on the date and time of michael's death now.



this has been a day of very present emotions, for more reasons than one.

today we learned that the recent chemotherapy regime has been effective in terms of controlling the growth of cancers in my daughter's lungs.  the main tumour has shrunk significantly, and some smaller lesions appear to have died altogether.....curiously, did you know that a lung can remain healthy and functional, despite the presence of 'holes' in it? i learned that today.....

the current conventional wisdom is to continue with this line of intervention for a bit longer, and we are also exploring some other options alongside the conventional chemotherapy.

so anyway that result seems to be a bit of a reprieve, which is good.....

my daughter seems strong and consistently positive regarding both her present, and her future.

i look forward to a moment of fully appreciating that reprieve at some point when i'm not aching from this current grief.....

spirals & anniversaries

here it comes, descending.
i feel it settling upon me, weighting my limbs, my neck, my head.
what is it i feel alighting?

is it a bodily weariness?
does it come from days and days of illness, perhaps? followed by a looooong, involving day of children, doctors, driving, people, children....maybe i am still sick and this is what i'm feeling.

or could it be that ugly black cloud of grief? all of a sudden i'm overcome with memories, reliving this time last year in my life.  as the anniversary of michael's passing approaches - mere days away - i'm struck by the tendency of my idle thoughts turning to him, turning back to the raw aching confusion of the days around his death.
it is this then that assails me this night, making me restless, thoughtful.....agitated?
am i living the cliche of anniversary-related anxiety??!! oh god, i'd like to be a little more original....

it does seem unavoidable to feel him around me at the moment.  i am calling up joyful memories of his time with his kids. i hold dear a mental image of a photograph of michael walking up the track at tuntable with mally on his shoulders and arky walking by his side. in my mental image of this picture, michael's head is inclined downwards, presumably totally engaged with a prattling arky, whose focus is upward, toward her dad. mally, on high, is holding her tangled golden hair out of her eyes with one of her hands, and probably butting in on arky's story to tell HER VERSION.....it is my misfortune that i wasn't there at the time the photo was taken....i was, however, there on many other occassions of harmony and shared delight, and i call these up....to lighten the load a little.

as i sit and ponder on my perch on the verandah railing, observing the stars through a light layer of fog, feeling the late autumn chill on my cheeks, my neck, it occurs to me: it just may be the mist settling upon the crisp, cool night outside, it just may be it's winter's approach which has me feeling this heaviness.

ha! i think some of this steiner stuff is creeping in on me! sometime after michael died last year, i attended a winter festival at my daughters' school.  it's probably the fourth or fifth or even sixth of these which i've attended, but it was the first at which i really felt and understood the symbolism of walking a spiral in darkness, spiralling inward toward a little light from a candle in the centre, whereupon one receives the light in one's own candle, to carry outward into the darkness.

that time in my life was so unbearably, so unutterably DARK and yet i understood, i felt empowered being able to walk INTO the darkness, confidently and find that tiny light, and walk with it, take it with me, and take along with me it's warmth.

i found tremendous comfort from that ritual, from that symbolism.

very soon i must channel these feelings, this energy.....winter's cold will impel me to become active, to stay warm, to keep the home fires stoked....and this will be my little offering of warmth and nurturing in an otherwise cold and frosty world....for now i'll wear a scarf and cradle a cup of steaming tea....

well, i'm confined to bed for the third day in a row. i realise i don't have much patience for being sick. it's only the flu, but it's really gotten me down. my head is stuffy and producing copious amounts of mucous, my chest hurts every time i cough, my joints are achy, my neck is stiff and sore.

i guess it's an opportunity to test out all the remedies i recommend to others in this situation, and i'm grateful i have all of these at my fingertips.

i just don't like it, though. i'm bored senseless....i've run out of books to read, and have resorted to one from my ten year old daughter's collection....and there's only so much iview one can watch.  i appreciate what a stretch it is for my eldest to stay positive when she has to lie in bed for five or six days at a time, feeling weak and nauseous from the chemo.  i'm always around for company, but really, what 18 year old wants to spend all day and all night hanging out with her mother??!!

she has risen to the occassion, however, and has been preparing food, washing up and generally giving the impression that she cares about the fact that i am feeling so unwell. bless her!

i have to say, this chemo thing has been more bearable than i expected, for all of us. while she has lost her hair, and feels pretty crap for the week or so after her chemo, she has managed to keep her weight fairly stable; she's eating pretty well - though she does have some weird pregnancy-like aversions and food desires!; her spirits remain good. i was worried about her having low immunity, and living in the middle of the forest with two younger siblings, bringing all sorts of snot and vomit home from school, but this has been okay, too.

she is going to uni one day per week in brisbane, driving herself up and back in her NEW car (!) but has had to miss one week in three due to chemo side effects.  the folk at UQ have been wonderful to her and are really making it as easy and accessible as possible for her.

so, she has taken it all in her ever graceful stride.  life goes on, and we just adapt.  i've been able to work two weeks out of three.  this has been really important for me, to keep some kind of social aspect in my life, and i really appreciate that my business partners have made it possible for me to dip in and out as life circumstances permit. the kids have had uninterrupted schooling and continue with music lessons, gym classes and soccer training.

so, as always, it seems the anticipation is so much worse than the reality.  i don't know why i'm surprised, as it's proven time and time again.  who was it who said 'all we have to fear is fear itself'?  no doubt a very wise woman.....