Thursday, December 26, 2013

Best pressie santa could bring us


Christmas this year has been spent lounging around in hospital. I observed to my own personal reindeer (Saint Mike) that this was a rather extreme way of ensuring a stress-free Christmas Day!

What has been absent this year due to my planned admission for blessed relief from craptastic chemo nausea you ask?

- No psycho mummy attempting to create a feast worthy of Martha Stewart
- No control enthusiast mummy attempting to orchestrate setting of table to match feast worth of Martha
- No control enthusiast mummy cracking the complete shits because no one can get their arses enthusiastically to the table to enjoy (and provide positive reinforcement) for said feast worthy of Martha

Ahhhhhhhhh can you hear Saint Mike's sigh of relief?

Instead I came into hospital on Sunday and have remained cocooned in what is a very quiet hospital over the Christmas break. Coming to it with very low expectations it has been blessedly stress free for me too. Oh aside from the cough I've picked up from a rather over enthusiastic air conditioning vent above my bed:)

I decided not to set daddy any hurdles to jump over and left alone he has hit all the right notes...my room gets the prize for the most festive in the hospital (according to every staff member that crosses the doorstep).


The girls brought their bean bags and lay about to watch the Carols (Melbourne/Channel 9 version!!!)


I awoke on Christmas morning with a suitable burst of energy and had a wonderful visit with my little elves and stubbly reindeer. I opened my presents and didn't once have to adopt the dreaded "present receiving face"! I was just so grateful to be with my gorgeous little family and be able to share such special time with them.

Having unwrapped my gifts I gave my KATs the best pressie they could ever receive (I hoped). The news that this hospital visit spells the end of my downward trip resulting from craptastic chemo. After six tortuous cycles my oncologist has decided that I can forego cycle 7!!!!! No more FECking FEC for me:)

There were tears all round from Oldest KAT, Middle KAT and me. Saint Mike and Littlest KAT stayed composed. The relief in my beautiful girls eyes was palpable.

Truly the best pressie ever - a mummy that will start to get better in the New Year.




Wednesday, December 18, 2013

Catching up


Catching up. Chasing my tail. Staying afloat. Pretty much sums up what it feels like to be going through each three week craptastic chemo cycle.



Chemo day seems to be rolling around faster and faster. Recollections of merry-go-rounds. No sooner have you swung your head around to keep sight of the parent (or some other random landmark) than you've been whipped around again. The cycles seemingly getting faster and faster and everything a blur in between.

My last hospital stay was a blessed relief. The cyclozine is truly my miracle drug. It effectively alleviates the nausea as long as I can get my two daily injections. Unfortunately once I'm home again the dreaded nausea returns.



The cycle goes something like this:
Day 1 is Craptastic chemo day. The me that presents at the chemo cottage is chirpy and bright. Like a bird in the wild my camoflauge of choice is usually some sort of bright ensemble matched with equally bright accessories (earrings are my thing). In the course of the 2.5hr infusion of my FEC cocktail I am transformed into a weakened version of the me that arrived. If my colours could reflect the internal tranformation they would be faded and grey by the time the last fluids have dripped slowly into my arm. I am chauffered home by my most constand companion (Saint Mike) and it's straight into bed for blessed sleep.

Day 2 is the calm before the storm. The Emend drug does it's thang, keeping the nausea well and truly at bay. 24hrs post infusion I give myself a jab of Neulasta which is the veritable bugle call for my white blood cells to rally. I've been told I'm being remarkably nonplussed by the need to inject myself with this drug throughout chemo but I find it's really the least of my concerns. I channel my innter orange and just jab it in. It's only a temporary affliction...diabetics have it a lot worse if they have inject themselves daily or more!!

Day 3 is when the nausea tide begins to lap at the shore. The effectiveness of the Emend drug used to last until day 4 but last cycle I was dry retching by midday on Day 3 (Sunday) and it's only with a midday dose of Dex (my friend who associates with Speed) that I can get through the day. This last cycle I busied myself with some obsessive-compulsive Christmas decorating.



Day 4 it was off to hospital. The cocoon-like nature of my hospital room. The frequent "observations" by the nurses and drugs and fluids being pumped in via my other constant companion (jthe drip!).

Day 8 I bid farewell to my last Cyclozine injection and whilst the thought of being at home is attractive because I am around my favourite people in the entire universe....it's also anxiety-laden as the nausea begins to lap around my toes once more and before the weekend (Day 10) is out I am back to waist deep in a tide of nausea that although doesn't submerge me certainly makes for an unpleasant week ahead as I try and keep it at from submerging me.

Day 14 is when I start to get some semblence of normality back. Unfortunately "normal" at this point still feels like your worst sensations of chronic fatigue syndrome. Daily routine is nirvana but a struggle. This cycle it coincided with the school graduation mass and I was determined to do my "bit" with the catering and entertaining the lovely families who are departing the school this year. It was also my chance to catch up with my support crew of lovely mums who have been such a help and cheer squad.



I may perhaps have overdone things and according to Saint Mike I overstayed by about an hour. Shortness of breath, heart palpatations and dizziness accompanied my attempt to exit and I had to be helped to the car by a none-too pleased husband! It was worth it! I had a great night:)

I'm now typing away on the morning of Day 20. I've been up since 3:30am. Sleep is not my friend at present. Fingers of sunlight are starting to creep up from the horizon and the kookaburras have commenced their morning conversation. Today is blood test day to check my levels in anticipation of starting a new cycle tomorrow on Day 21.

It's a wild ride!

Friday, November 29, 2013

Helping me get up these endless hills


We're at the gruelling part of the FBC journey. My latest analogy is that it's like riding up a hill anticipating that if you can just tough it out to the crest you can cruise down the othert side before you need to confront the next hill.

Except there is no crest. There's just another bloody hill. Hills with no crest. No time to re-fill your "tank". Barely time to take your hands off the handlebars and gulp in some replenishing fluids.

This past cycle was a turning point in many ways. It included the "planned admission" to hospital where I endured three failed attempts to insert a canula whilst my three lovely KATs cavorted around the room, the registrar became increasingly agitated, my wonderful sister bit her tongue and Saint Mike  maintained his usual calm demeanour and I wanted to close my eyes and float away to a land where there are no more needles and no more nausea.


It took two days before the magic cocktail of anti-nausea drugs was established. In my case the drug Cyclozine is the wonder drug that when combined with Zofran and fluids makes my nausea retreat. Unfortunately it can only be given by injection so I had a sub-cutaneous butterfly thing put in so they could inject it without more jabs.

I came home late in the week and without my new bestie (Cyclozine) I was back to wobbly - the nausea although not as bad as at the start of week 1 was still grim and my bowels go into lockdown so I was in a bad way over the weekend.

Getting back up and around my priority was to nurture my KATs because the hospital week had been really tough on them. Planned or unplanned, seeing your mum in such a low state and having to leave her side to go home wasn't much fun for any of them.



I decided to spend as much time as I could giving each of them one-on-one time and thankfully by the end of week 2 they were all in a much happier place.

I on the other hand commenced week 3 dreading the countdown to Friday's craptastic chemo day and the commencement of our next "hill". This hill was made all the more steep because I had an appointment to see the breast surgeon and discuss my double mastectomy which is to happen 6-8 weeks post-chemo. 



Throughout this journey I have tried to focus on what's immediately in front of me. Consequently, this next surgery has been put in the "later" basket. Now it's front of mind and I am feeling quite overwhelmed by the prospect of having my old friends removed and a 12 hour reconstruction. Lots to organize and consider and hurdles to overcome re co ordinating the timing of my breast surgeon and the plastic and reconstructive dude. So far it's not going well. 

My older sister commented that what I need is an advocate so I don't have to deal with their shit-fighting over fitting me in....she's a smart girl (both my sisters are very very bright!). Bring on the advocate I say. In the spirit of my bike riding analogy it's like someone jumping out of the underbrush, reaching out and shoving my weary arse up this bloody endless hill!

As you can see from the photos in this post, life goes on! My KATs are growing up amidst this turmoil and I couldn't be prouder of them. I continue to be surrounded by caring and thoughtful friends who have given us the metaphorical push up the hill at various points!!

To those who comment and read these posts you too are hands pushing us up the hill and for that I am eternally grateful:)

Monday, November 18, 2013

There's no good cancer


I called into a talk back radio show today. Couldn't help myself. Haven't ever been backward in coming forward and not going to start now.

The topic was related to the disproportionate attention (and resources) that Breast Cancer gets relative to other cancers and the community perception that it is the "biggest" cancer for women.

As I was waiting on hold to make my point I listened to the various callers and a very articulate man from the Australian Cancer Council who dispelled some "myths" (for example lung cancer is actually the biggest "killer" of women). 

A lady called in and referred to breast cancer as the "sexy" cancer. The announcer (who I love) asked her in what sense she meant sexy. Quite rightly she talked about the fact that from a marketers perspective boobs are sexy.

I was really surprised by the emotion that the use of the word sexy stirred in me. I was almost teary contemplating the dichotomy of sexiness and the realities of breast cancer. The two should never be used in the same sentence and I felt compelled to make that point strongly.

When I did get to speak (which in itself was an honour as I can imagine there were a huge number of calls on the "board") I managed to make the following points quite succinctly (for me a waffler from way back):

1. All cancers and in fact all diseases that affect families the way we have been affected suck.
2. It would be fantastic if all the other forms of cancer could be elevated to the degree of public awareness, support, charitable contribution and therefore research and services that Breast Cancer has because then everyone who gets this terrible diagnosis would benefit equally.

Then I made my final point. The one where I said that using sexy in the same sentence as Breast Cancer makes me want to cry. Sexy is the last thing I feel and the Pink October marketing of perfect boobs when that is far from what women are left with post-breast cancer treatment is very distressing to me.

The truth of it is that my boob is a mangled mess and I try not to look at it. I certainly don't touch it and the fact that Saint Mike and I jokingly refer to this as our "year without sex" isn't just due to chemo nausea. 

My hormones have packed up their wagon and decamped. I am experiencing th joys (plural) of the hot flush multiple times a day. If I'm not feeling like puking I'm a cranky cow likely to bite my husbands head off! His saintly status is not just being enhanced by his patience with the treatment but also with the repurcussions it's had for our interactions.

I've always had a fairly amiable relationship with my boobs. Now that they're on a countdown to oblivion I feel like it's only a matter of time before I give this tangible loss the air time it deserves. But I can't focus on it now. Out with the old and in the new will happen in late Feb/early March but in the meantime I've got to focus on what's immediately in front of me and unfortunately that's a bucket! 

Sorry if this is a tad depressing. Felt like putting on the record these particular emotions. One day my girls will read this blog and I want them to get a nuanced perspective:) 

Saturday, November 9, 2013

Lull before the storm

It's day three of chemo cycle 4 and I'm sitting up in bed typing on my iPad using my new whiz bang keyboard and origami cover


Sadly it's nowhere near as pretty as this origami flower but it's ticking all my functionality boxes.

I'm ruddy faced and feeling a bit jumpy from the dexamethosone (AKA mini-speed). It alleviates the nausea but doesn't completely rid me of the craptastic chemo side effects that I'm becoming accustomed to.


This was my position on Friday afternoon post-infusion....resting my weary head.

Note the stellar nails! A welcome side effect so far is that I've stopped biting my nails (I had resumed this woeful habit when I was first diagnosed). The thought of double ingesting the chemo drugs was enough to bring my nail biting to a screaming halt. Coupled with the suggestion of the chemo nurses to get myself to a nail bar pronto and Shellac the heck out of my fingers and toes was enough to get this Taurean racing off to the nearest franchise.

Another thing that has alleviated the after affects of this dose is that I got to open a few more of the pressies that my best friend in the entire universe sent over for me. Each one is packaged up separately for each chemo cycle. 


Bracelet 1 made me smile....but when combined with this...


Bracelet 2 "Fierce" I laughed....I felt anything but fierce at that particular moment in time!!


It's hard to separate what I loved more - the card (writing on the inside will remain private) or the lovely coin brooch....it's so special words don't describe it. It's another token to add to my growing collection of good luck charms given to me by thoughtful and kind friends and family.

When I count my blessings I count all of them twice.

Monday night I'm off to hospital, origami cover and keyboard in hand. I am sure to suffer the dreaded imposter sydnrome that I don't deserve to be taking up a bed but my breast care nurse said she'd actually like that to be what I'm thinking because it would mean I'm feeling okay and that's the whole idea!

My wonderful big sister is coming up (again) to help out Saint Mike and I with wrangling the KATs and I am really looking forward to seeing her. Yes this is the lull before the storm but I'm hopeful the storm won't be as bad as the last one:)




Friday, November 1, 2013

Halloween


Things have been subdued over here in KATcapers land. Despite my best intentions my blogging continues to be sporadic.

Craptastic chemo was never going to be a beer and skittles affair. I knew that. I just hoped that I would get cut a few breaks when it came to side effects. Unfortunately each cycle thus far has featured its own drama. 

Whilst my first visit to hospital was a fairly calm affair, my subsequent trip to the emergency room last week was less slightly more dramatic in that I was dehydrated and losing bodily fluids from both ends! Craptastic chemo is not only causing me kt have severe nausea but is also messing with my bowels something nasty!


It was distressing for all of us but I have been particularly concerned about the impact on the girls when I have to be rushed off to hospital. 

I seem to have one week out of three now where I'm relatively energetic (to a point) and so I am trying to busy myself with crafty pursuits to take my mind off the fact that I have an appointment with a canula every three weeks that I would prefer to skip!

Exhibit A is the above image - fabric covered canvas for a teacher at school who has a new grandchild. 


Exhibit B was another fabric covered canvas made for another lady at school....as you can tell my innovation with a fabric covered canvas is a bottomless pit!

 
I also managed to finish three shelves that I'd picked up from council cleanup - wallpaper found on Etsy and a few sample pots did the trick. My skills with a drill and a spirit level still need some work but I'm happy with the result.


Next chemo is November 8th and my oncologist has arranged for me to check into hospital on day 4 post-chemo to be attached to a drip and fed anti-nausea drugs and fluids to help me ride out what seems determined to be the week from hell each cycle. Hopefully this will be a calm and controlled process that we can ensure doesn't traumatise the girls and keeps me relatively healthy.

Halloween decorations will be the topic of my next post...even craptastic chemo can't subdue the frustrated event planner in me and I decorated up a storm...before collapsing in bed and missing the afternoons proceedings:)




Sunday, October 20, 2013

Lull in communication



Apologies about my sudden radio silence. Round two of craptastic chemo didn't follow the anticipated gradient (upwards) and instead I seemed to lurch from one day to the next feeling nauseous and lacking in anything that could be described as energetic.

It culminated in an overnight stay in hospital to have some fluids put in and some checks done to make sure there were no underlying issues with my bowel....it had decided to hog some of the limelight and was behaving rather badly! On strike and seemingly immune to whatever went in there to try to wake it up...and then suddenly deciding to have a hissy fit and make me seriously want to die due to the painful cramping and nasty business emanating from my nether regions.


I have tried to adopt a more relaxed routine in an attempt to cooperate with my lovely oncologist so I took to teaching myself how to crochet with zpagetti. If you're unfamiliar with this phenomenon you should check it out! My friend who suggested it reminds me that it's perfect for a more "free form" expression....which translates to "missed stitches...who cares!!!".

It was frustrating and it took quite a few attempts before I mastered the stitches...I'm doing a cheats version of the magic circle (crochet speak). My first attempt was this....


It was supposed to be a vessel but it started to look like a bottle cover so in the end I decided just to let it be:)

The next attempt was much improved and is now sitting proudly where I can admire it regularly! I am just loving playing with the zpagetti colours (trying to contain how many colours I succumb to) and have been practising stars and flowers...even made a garland for my beautiful friend who introduced me to this therapy.


So that was a great way of distracting you from how crappy I am feeling! Craptastic chemo round 3 was last Friday and I'm going to try and spend the day in bed giving my body the rest it needs.


Yes there was the happy chemo face on show....all I can do is keep smiling when I can and not focus too much on how much the after affects crush my spirit. 

Round 3 of 7 done....in another week we will hit the half way mark. That's something to look forward to:)


Sunday, October 6, 2013

Boldly bald



Sounds obvious doesn't it? It is a no brainer that people stare at a bald person. I think it's human nature and I was prepared for it.

I've always suffered from the "what are people thinking" disease. It's kept my imposter syndrome and inferiority complex company back there in the musty recesses of my self conscious.  Courtesy of many years of employing cognitive behaviour therapy to counter these snarling beasts of my mind I have learnt that it is more helpful to challenge those inner voices. I have  found that countering them with alternatives works. The conversation goes along the lines of:

"Its All About Me" inner voice: "Oh shit. Starer alert! They're probably thinking I'm so up myself. Why doesn't she cover her bald head up. Why did I think it was okay to go around the shopping centre bald?"

"Get over yourself you nutter" inner voice: "Pleeeeeeeeaaaaaase! It's a bald head. Of course there'll be a few double takes. For all you know they have a thing for bald women or they're wondering if you're making a fashion statement".


All jokes aside I did go out rocking a headscarf for the first couple of outings. I found a YouTube clip where a woman shows a great way of reusing old TShirts as head wraps (you cut them off under the armpits and wrap it around your head creating a great base for adding scarves etc. I liked it. I did it with a white one and a grey one. Thing is though it's a tad hot at the moment and I'm finding that my head (both physically and psychologically) prefers to be unencumbered.

The analogy I used with Oldest KAT when I decided midway through the week to stalk the shopping centre boldly bald was that I'm the type of person that when confronted with the cold pool would prefer to jump in the deep end and immerse myself fully rather than dither around sitting on the edge, dipping my toe in ever so gingerly. Much better to feel that momentary clench of coldness grip me and then have it over and done with that inch my way in gritting my teeth.


It was confronting entering the shopping centre with my vulnerability on full display. It did require me to do some kick-arse on-the-go CBT to banish the voices that urged me to run for cover (literally). It wasn't only the eyes of nameless onlookers. The eyes of the KATs were also absorbing both people's reactions to me and my response....would I fold like a cheap hammock?

Pleasingly I found it liberating to be boldly bald. I have had compliments which are lovely, my doctor also suggested I had better have my Gaydar on high alert as I'm likely to attract attention. Who knew that Lesbians like bald? Feel free to educate me on this so I can educate my doctor.

Accessories are in my DNA. Being a cancer-suffering wallflower was never on the agenda so out have come the scarves, hats and earrings.
There are definitely downsides to baldness which I will elaborate on in my next post but for now let's stick with the way it is already challenging my personal paradigm. I finished this weekend with a relaxing afternoon at the local pool where I walked around with my sun screened noggin glinting in the sun when I was making my way to the pool. I ignored the stares and just enjoyed the glorious sun and the equally glorious water that was so healing for my soul one week post-chemo when I've hit the wall and feel like I can't take anymore headaches and nausea.

What strangers think of me is the least of my issues.


Wednesday, October 2, 2013

Revealing the noggin



So here we have it. The noggin reveal. Despite the nausea that accompanied the weekend post-chemo I had decided that I wasn't going to delay the inevitable. My rapidly thinning hair needed to be put out of its misery.

On Saturday Saint Mike was charged with procuring a set of clippers when he took the girls out to the local shopping centre for a movie. On Sunday morning it was me who unpacked them and plugged them into their charger. Like most mere men, task completion can be the undoing of my husband.

The cape is a child-sized version acquired as a visual prop to enforce the "hair must be tied up or cut" rule which Youngest KAT was resisting some months back. It has sat unopened as have the scissors purchased at the same time...who said dire threats don't work?

We all congregated on the back lawn as I thought it a good idea to avoid sweeping up. However when Sally (the dog) started picking up chunks of hair it became a mad scramble for the girls to collect all the "bits" less we poison the dog with my chemo-laden hair. Quite the comedy act with peals of laughter no less.


Saint Mike seemed to take a perverse pleasure in his role as wielder of the clippers. A running commentary was given by the KATs regarding how daddy was giving mummy a Mohawk...then it became a tuft of hair which he insisted would be a good look.


Perhaps it was the flurry of activity (a confused dog chasing your hair around the lawn with three children in hot pursuit) but I didn't feel distressed. I was self conscious and felt immediately unattractive (note to self - black plastic cape isn't flattering) and I regretted that I had not stage managed this a bit better. Nausea will do that I suppose.

I felt strongly that we should do it as a family. I could have gone to the hairdressers and revealed my baldness to the KATs post-clip but having experienced their differing reactions to my pre-chemo chop I felt that immersing them in the process was for the best. Thankfully it worked.

Each of them reacted in their own way. Oldest KAT exhibited typical teen repulsion (yuck factor) but she is also painfully self-aware of how I appear now to the world and she was immediately worried for me.

Middle KAT was predictably reticent to say anything lest she reveal either her own anguish that I am suffering from this disease at all or that she might hurt my feelings by saying something "wrong". Wry smiles and gentle caresses were the order of the day.

Youngest KAT was tentative...it was the tactile that was front of mind for her....how will it "feel" when she touches it. Prickly is the answer!


This image captures the thoughts and feelings that were fluttering down around us. As someone said on my Facebook page - I am cherished and surrounded by love.

I'm now into my fourth day as a bald eagle and my next post will reflect on how it feels to face the world with my remarkably smooth billiard cue.



Saturday, September 28, 2013

I'd rather be here


I'd rather be feeling the cool water licking my body this morning. Instead the only thing licking my body is the constant waves of nausea that are effectively making me feel sea sick! 

I have taken my third capsule of magic meds that are supposed to render the nausea inert but this morning it is truly awful. 

Saint Mike has vacated the house with the KATs and taken them off for the swim that I really want...maybe I should drive after them? I'd like to but chundering out the window may not be a good look and although the water will be a blessing, the noisy children sharing the pool will do nothing to dull the roar that is occupying my head.

Yes this is day 3 post-chemo and like the first round it truly stinks...it's also going to be the day the girls and Saint Mike shave my head.

Post with photos will follow...
(Image credit - Martine Emdur painting)

Friday, September 27, 2013

Getting back on the chemo horse

This morning I stood in the shower staring blankly at my hands covered equally in shampoo suds and my hair. Every day I have gingerly touched my hair waiting for it to give up the follicular ghost. 



As I mentioned in my last post I had even started to feel a bit of imposter syndrome creeping in as the days passed and I was not bald!

I had rationalised that as my 1st chemo session had been such a debacle I had been spared losing my hair and it would happen in the next few weeks post my new FEC cocktail commencing. So as I showered this morning with my head full of "worry" about what the day would bring in the chemo-lucky-dip department I absent-mindedly shampooed my hair. Seeing that amount of hair come away without even a whimper (no discomfort felt at all) was truly perplexing. Almost in disbelief I shampooed for a 2nd time and sure enough more hair fell out. 

I felt a bit bewildered to be honest. It's odd how even though I knew it was going to happen the timing just caught me by surprise. In order to give the KATs plenty of forewarning I called them in and gave them the news. Oldest KAT seemed unperturbed as did Littlest KAT. Not unsurprisingly Middle KAT did her best to be stoic but was clearly perturbed.

Annoyingly I couldn't spend the entire day pondering the imminent reveal of my scone as I had my chemo appointment to get to! So I ignored the hair mounting on the floor, in the basin and on the counter (note to self - white corian bench top is a VERY bad idea!).

I chose to dress in super bright spring colours today to counter the feelings of anxiety that could have swamped me if permitted. I'm trying to stetch my blogging skills so created this collage of the outfit...wasn't up for photos today!


It wouldn't be me if the chemo clogs didn't get an outing! My nails are also currently coral pink/orange shellac:)

The top looks blah but in actual fact it's a really nice lime green and I love it with the coral.

I'll post in more detail on how the actual chemo went but in short I'm home, I'm on an anti-nausea drug that doesn't give me lock jaw and a nasty metallic taste in my mouth. I am wiped out and am going to stay in bed and rest as long as my body tells me it needs to (thank goodness for another week of school holidays).

Over and out from my own personal pharmacy!!!


Monday, September 23, 2013

Respite from reality

 

My next chemo cycle starts this Friday. I have six cycles of FEC which sounds like some sort of mucous you would cough up during a particularly bad chest infection.

In actual fact it's an acronym for the cocktail of three drugs which my lovely oncologist has informed me will not result in the sort of severe allergic reaction I had when I had my first chemo round....oh that would be the one I haven't been able to write about here because it was so traumatic!

Imagine someone going into anaphylactic shock and that about covers it! Suffice to say that the drug that caused this reaction is not one I will be having. To add to my "special" status I also managed to have a reaction to the anti nausea medication (Maxalon) which resulted in something akin to lock jaw and a bad sense of vertigo which when combined with the buzz from all the steroids they had to pump into me made me truly want to euthanise myself pronto.

I was bedridden for five days and then improved daily the point that I was feeling dreadfully guilty (once again) for all the assistance I'm receiving with the KATs....imposter syndrome persists even when I'm legitimately unwell....I still feel like a faker...not "sick" enough...undeserving of all the terribly nice things people are doing and saying to me.

My poor KATs are naturally finding this roller coaster ride a tad tiresome and I thought they deserved a break from reality just as much as Saint Mike and I do! So a few days away have been the order of the day.

We loaded the car up with cossies, goggles, bikes and the minimum amount of clothing and drove a few hours north of Sydney to the calm and tranquility of a beachside holiday park. We have been here before years ago so I knew it was the antidote to our malady. Four days later I'm typing this as the KATs frolic in the pool....their last swim before they jump into the already loaded car for the return trip to our unwanted reality.

Oldest KAT tearfully proclaimed that it has been the best holiday she's ever had because she could forget that I'm sick and no one has asked her how her mum is. Truthfully I don't look sick (my hair is yet to fall out...cue more imposter syndrome) and I too have been lulled into feelings of "normal"....my heart breaks that we cannot remain in this state of blissful ignorance.

They have ridden their bikes with gay abandon, furtively admired cute boys around the park and frolicked like dolphins in the pool. I'm already plotting to return in early December to give them (and me) a much-needed booster shot before chemo round 5 on Dec 20....this time with our hard-working daddy along for the whole time!

The image I've used in this post is a mosaic garden tile that I made with Middle KAT....that was my week 2 project....I exhausted myself lifting three such concrete pavers and have been sternly instructed by my oncologist and Saint Mike to undertake less taxing creative distractions during chemo...passing out isn't a good look!

So we don our Indiana hat and march on relentlessly towards the other side of this horrible abyss....wish me luck for my mucous-like FEC regime:)

 

Monday, September 9, 2013

Wearing Indiana's Hat

In my last post I mentioned that Middle KAT and I had been workshopping an analogy to help her cope with what's happening to me.  As you'll know if you've spent any time reading about Middle KAT, she's a bit of a visual child.

Our gorgeous girl is a bit of a movie buff.  It makes my heart sing as watching movies has always been a huge buzz for me...but it's also something that gives her a real connection with Saint Mike because she's a keen aficionado of the sorts of movies that make HIS heart sing...think completely inappropriate action/war/sci-fi/blood & guts "boy" flicks!!! 

So, where else to go for an analogy to help her understand mummy's predicament than a classic action flick....Indiana Jones!

 
 
So as I stood holding her tight whilst she cried at the shock of seeing my pixie hair, we talked about how what we were doing was a bit like what Indiana had to do when he cuts a swathe through the jungle only to come bursting out to find himself perched perilously on the wrong side of an abyss.
 
 
Every nerve ending is telling him that he should not proceed, risking life and limb on the tenacity of some dodgy rope ladder strung across this crevasse. 
 
His fight or flight instincts are engaged in a rowdy battle under his hat.
 
But he knows that he needs to get to safety across that bridge and he really has no choice....he must do the thing he least wants to do.
 
We are like Indiana Jones - we have no choice.  What's on the "other side" is the rest of our life. Our life together as a family.  This is an abyss that there's only one way to cross - surgery, chemo, more surgery and a very long stretch where mummy doesn't look like the person you know and love!
 
Middle KAT really got this analogy!  It gave her the necessary "colour and movement" and seems to have enabled her somewhere to park her feelings and that's what I wanted.
 
I'm posting this from bed recovering from the first round of chemo.  It didn't go well!  I'm barely functioning.  If I'm continuing the Indiana Jones analogy I feel like some little Aztec guy shot me with a poison dart!!!!
 
Next post I'll relate what happened.  We haven't fallen into the abyss but it was certainly calling my name a few times.

Thursday, September 5, 2013

The Premeditated Chop

 
 

My first chemo cycle commences tomorrow. The countdown will thus commence until the day my hair follicles decide to head for the hills.

Never one to contemplate an idea for too long lest the opposing view gains traction I booked in for a "pre-chemo chop" with my beautiful hairdresser Rachel.

I thought chopping my hair off was a way to inoculate myself and the KATs from the shock of losing my hair completely. I hate to say it but I'm no longer convinced of the wisdom of this approach....poor Middle KAT was completely devastated when she saw my pixie cut!!!

This photo was taken a week ago at dinner to celebrate Oldest KAT turning 13!! As you can see my hair was long enough to pull back in a ponytail....not any more!

I feel okay when I look in the mirror but it's like looking at someone else. I cried when Rachel started. I cried during the cut. I cried when I left the salon and I've cried along with Middle KAT as she cried big heaving sobs. I asked her to tell me what words came into her head to describe how she's feeling:

Scared

Worried

Frightened

What to say to allay those horrible feelings? Well, when you're me you go for an analogy....next post I will share it with you:)

It will be all good. I just wish it was all good now! If I had to express how I'm feeling right now it would also be:

Scared

Worried

Frightened

Great minds think alike:)

 

Monday, September 2, 2013

Spending time wisely


 
Four sleeps to go until my first chemo cycle commences. I will be enduring four "cycles" each of three weeks duration. 
 
I posted the following on the Facebook page my sister set up to allow friends to track my progress....
 
"Combo of drugs is Docetaxel + Cyclophosphamide (or TC for short). Will then be on Hormone Therapy at conclusion which will last 5-10 yrs"
 
I can talk about the drugs and the duration with an alarming calmness.  On the surface I've pragmatic and stoic.  Underneath I feel I'm doing a great impression of the scene in the Wizard of Oz where the Wicked Witch melts into a puddle............................aaaaaaaagggghhhhh my inner voice is screaming....I'm meeeeeeeeeeeeeeeeeeeeeeeeeeeeeeelting!!!!
 
 
Last Monday was one of my worst days.  I seemed to cry all day.  I cried on the phone to my beautiful mother-in-law in Canada.  I cried on the phone to the breast care nurse. I cried to my kind and caring neighbour.  Worst of all I cried in the arms of my children.  Heaving sobs of despair and sorrow that this insidious disease is taking our family off on a tangent that we didn't anticipate.
 

 
Tuesday morning I drove the girls to school with the sun shining brilliantly and I decided that if I was going to get through the next week and a half before chemo commenced I needed to stay busy - find things to keep my mind and body occupied so I had less chance to dwell on the road ahead.
 
So I've got busy in the garden and I've got busy DIY'ing!!  Hence these random photos that on the surface have nothing to do with breast cancer!
 
 
I've repainted our back patio.  I have been quietly frustrated that since our renovation last year the disparity between our lovely front porch and our daggy rear patio was even more pronounced.  So, having removed all the patio furniture and other assorted crapola I gave it a good clean and then got working on repainting it.  A good deal of sweat and fatigued muscles and it was completed in time for us to celebrate Fathers' Day out there!
 
Project number two was a revamp of the small area adjacent to the patio...imagine broken concrete and messy dirt!  A trip to Bunnings, an order of pavers, sand and other "ingredients" and by yesterday I was admiring my handiwork - a neat paved area that is now crying out for some pot plants!!  
 
Finally, I have a work in progress with our front garden beds which are planted with hardy species which I'm now hearing is being referred to as "Palm Springs" style (oooh sounds good doesn't it!).  There was a couple of spots that needed a bit of filling in and I've now achieved this courtesy of a couple of Strelizia's (Bird of Paradise plants).  They will grow to about 1.5m tall and possibly as wide and will give some gorgeous colour when they flower.   
 
Timely then that today when all my "jobs" were completed I had time to ponder the months ahead and have relapsed slightly into floods of tears territory.  Nothing to do now but occupy myself with getting the house in order between now and Friday and allow myself to have a good cry if I feel like it!
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