Week 2 of Radiation:

(Please note: if you are reading this blog for the first time, you need to start with the post entitled " The reason" which can be found in the 2011 Archive)

Blog entry preceding this one is "Week one of RADIATION".


It's Sunday night, Week one of radiation post went up earlier this afternoon so you all know how tired J.J was today. He was ready for bed at 8pm, made it to 9pm. At 10pm as I sit and watch the movie "Grease" on TV while just playing around on Face book, I can hear him from the bedroom coughing. I move to the kitchen grabbing one of Arwyn's drink bottles, fill it with water and take it to him. He's awake -
"Hey baby."
" Can I get you anything? I have water here if you need it".
" I'm not nauseous. Put the water here (indicating his bedside table). Can you bring me a bucket . . . just in case?"
" Sure honey, are you sure you're not feeling sick?"
" No I'm not, it's just in case."
"Yeah... you might cough too hard and something might come up. Be back in a moment."
I walk down the hallway to the bathroom and empty Arwyn's bath toys into the tub. The bucket is one of her old diaper pail buckets and I'm worried.


Like chemo, where hospital staff drill into you if you have a temp of 38℃ get your arse to an E.R stat, the same is done for radiation for a skull tumour near the brain, however this time it's if you have nausea or a headache that just doesn't go away.


I'm worried...always, always worried. And then the school dance scene begins from the movie and I'm watching Livvy and John dance in their younger bodies and just wish I was back in high school again to have that energy, that lightness of foot and then I remember that high school wasn't exactly a picnic either.


Back to reality ... J.J's coughing has stopped. I'm the only one awake at 10:42pm and my body just wont fall asleep yet... I feel alone ..... until tomorrow where we start this all again - I really don't know if J.J can handle this...and I think I'll be writing this week's post on my own due to his fatigue. :(


MONDAY:


Lily: Fucking shocking night sleep for me. J.J said he slept alright, waking up around 2am, and then reading until 4am before going back to sleep (and that's a good night apparently). In my sleepless haze I kept imagining someone breaking into the house and then I would wake up - restless.
I'm up at 6:30am, J.J wants to leave by 7:30am so I get Arwyn up and give her breakfast with a dose of Scooby Doo. As I'm preparing my breakfast, I hear J.J moving about and notice something with Arwyn's eye.
Are you fricking kidding me Universe?? She's got a case of conjunctivitis and she starts school tomorrow. Bugger, shit, mother-fucking universe.
I'm getting the phrase " Nothing ever comes easy for this family" tattooed on my arse as a constant reminder to not be surprised by these little things. My arse is so huge I'm sure my eyes will be able to see it.
By 7:45am we are all in the car and heading to J.J's appointment to get blood work, x-ray and then a quick chat with the registrar, maybe if we are lucky, a senior doctor.
Nope, it's a little registrar, though this one we both don't mind so much, J.J declaring " he'll go easy on her".
Nothing new is learnt, same old same old. 


On our way home - J.J assumes the position on the lounge, Arwyn engrossed in her Leapster Explorer console with the new addition of a vid/camera application. Getting very tech savvy our little girl.
At 2pm we are back out and taking Arwyn to the local doc to get her eye checked out. It's only viral conjunctivitis and we are told she can go to school tomorrow if the eye doesn't weep in the morning after cleaning it the first time. Fingers crossed.
Back at home the day continues and one of my day care parents who is now a very good friend, Corrina, has offered to drive J.J into the hospital for me tonight for his radiation treatment at 7:30pm. It's very much welcomed by me as I can barely keep my eyes open and it's only 5:30pm. If she had not of offered, Arwyn wouldn't be getting to bed until 9:30pm and that does not bode well for first day of school scenario.
12:00am - Cats are destroying the house - must kill kitties, must kill kitties.


J.J: Well, I slept most of the day, everything is a blur and haze. But, I still rest easy as I can remember being this way when I had radiation treatment last year. Just not quite as bad.
This evening is different, the appointment is a lot later so Ms. Corrina is driving me in. Which reminds me I/we need to write a post dedicated to our unsung heroes. Its an entertaining evening, we keep each other laughing with various stories both to and from the hospital. I get to recount stories I'd forgotten about or have been banned from telling again and again by Lily.



TUESDAY:
6:10am - Arwyn's first day of school. Preparations prepared.
8am - Out the door, at the school and it is chaos. Pure utter anarchy - three schools in the same location, first day for the whole school to be back in session and it is pissing down with rain. I drop Arwyn and J.J as close as possible to her class and then do laps for ten minutes until J.J comes back out for me to pick him up. Kind of bummed I do not get to drop her off with J.J but such is life I guess.
11am - I'm tired. And I'm sorry for being tired readers - I'm sorry that's all I keep seeming to say about both of us. Yet it is what I am. 


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I can't be arsed writing anything more for Tuesday so here is an exercise for all of you... 
In the comment section complete this sentence:
                "When Arwyn was picked up in the afternoon and her dear old mum asked her if she had fun, Arwyn replied,_________________________________________________ ".


J.J.: Arwyn's first day of school. WTF! Where did all the time go? My little baby is grownup. She's racing around the house in the morning,  totally excited, mostly about her school colour hair ribbons. Lil stays in the car with the daycare kids and I walk her to class and settle her in. That took all of two minutes, before she found something to play with and is annoyed that I still want her attention. At the end of the day, Lily goes in and picks her up. My little girl, who was the tallest in her kindy class, looks so tiny walking with Lily amongst all of the other students from the school - only half the height of the highschool students. I lose sight of her in a sea of uniforms, but when she reappears the same glee is still all over her face. I'll ruin Lily's game (Lily: Bastardo ;) - she told us it was a hard day, some boy snatched her blocks off of her.
"Did you tell him you don't like that?"
"No, I forgot to say that." *sigh*
"Well, if it happens again tomorrow you'll know what to say."
"Wait. You mean I have to go to school again?"
"Yes, everyday. Well almost everyday for the next twenty years."
"Stop joking me."
We decided to leave it as a surprise.



WEDNESDAY:
Lily: Day 3 of non-stop rain, South East Queensland is experiencing patches of flooding - nothing near last year's "big flood" yet it could still present a problem with regards to driving into the city due to road closures. Fingers crossed we get in and out of the city without too much drama.
10am - I found Termite swarmers on the property yesterday and have summoned an inspector. Really hoping for good news.
(later that day)
The house is termite free, the property however is not - which we already knew. So, the house is due to have a barrier installed on Monday and even though it pains me to part with money on any occasion, I'll happily pay for this if it means security for Arwyn's future asset.
12-1pm - Lily conducts a parent/child interview to get some new clients in.
1:15pm - Finally get lunch.
4:30pm The rain is subsiding somewhat yet parts of the north side of Brisbane are flooding and there are road closures everywhere. Around the Oxley area we can see the waters rising and hope they remain where they are until we get back home.
5pm: J.J's radiation runs routinely and I cave during the session and purchase a "coke zero" - I need caffeine, lay off people.


On the drive home we come to a grinding halt as the traffic has banked back further than we anticipated. In the time that it took for J.J to have his radiation, the water had spilled onto some exit roads off the freeway and is slowing traffic down. From the back-seat Arwyn tells us that " This is boring me Mummy. Just go another way".
There is no other way.
We amuse ourselves in the evening with some TV, some dinner, putting Arwyn to bed and torturing the cats with the laser-sighting on the nerf gun. The black one despite the obscene amount of fluff on her (she has to be part Persian she's so fluffy) can jump really high.
By 10pm J.J is in bed and I'm a few finger types away from following him.

J.J.: I don't know what they did, but the bloody mask actually fit comfortably tonight. Plus, they were over and done quickly. We could have actually been home by 6:30, sadly it was not to be - the road had flooded over at Oxley. This means singing along badly to songs, much to Arwyn's dismay. For some reason she would rather sing along to Twinkle, Twinkle little star than to hear Lily sing along to Grease.

THURSDAY:
Lily: HAPPY AUSTRALIA DAY ONE & ALL - I'm happy just to be alive this day and sharing it with my husband and my daughter. We may not be having a barbecue, or be going to a beach, or pool but we are together and to me that's the most important thing about this life.
No radiation treatment - no children from work - This means a day off.

J.J.: A day off! Awesome. I'm thinking its a day to drink and sleep on the lounge. If it wasn't raining it would be a hammock day. Arwyn is happy to be at home, and secretly I've really missed her the last two days she's been at school.

FRIDAY:
Lily: 6am - I wake up early to start the day and get Arwyn to before school care as I have a doctor's appointment at 9:15am. I confidently find on the Internet school map the location for the Before school care program. We get ready, eat breakfast, even J.J has managed to get up of his own accord and gotten dressed without prompting. I ask J.J what time his radiation is for the afternoon and he replies that it is at 5pm. 
Thinking it might hold out rain wise for the gardener to come in (a parting gift from some awesome parents) and start on the yard, the skies open up and the deluge begins.
We drive down to the school and park - Arwyn worried she'll get her hair wet we get her umbrella and raincoat, running daintily to the building. 


Hmmm, the place is closed up and looks like it is now just a store room. On schedule I see a young teacher's assistant walk towards us and ask her for the location. She declares she's only new but will ask her offsider. We wait for ten minutes as she fumbles for the keys to her classroom, giving up we move to Arwyn's Prep teacher who replies it is up in the hall. At this point I haven't lost my cool, just keen to get Arwyn somewhere she'll be looked after so she can make it to school on time instead of being dragged back and forth to the hospital to arrive at school half way through the day. By-passing the darkened hall devoid of life, I see a senior student standing in the rain, no umbrella, no raincoat - the urge to slap him upside of the head for just standing in the rain is held in check as I need information.
Without hesitation he points the way and becomes my lighthouse beacon. 
We are inside the building, Arwyn is signed in, snotty reply from the girl's in charge when I mention they need to update the webpage with the school map and then J.J and I are on our way.


My doctor's appointment went well, we explained to the registrar that if I was going to have the surgery we have been talking about since last year, that we need to do it as soon as possible. It's hard not to be so blunt and sound so callous when explaining our situation. But when I say matter-of-factly that J.J will be dead sometime this year and we need to get it done sooner rather than later, I feel that twinge of guilt for sounding the way I do and then apologise to J.J for my phrasing. J.J waves the apology away as we had already discussed this several times over yet I still feel the need to apologise. A CT scan and OPG scan (google it) is arranged with an appointment to come back in Feb to see the head doctor.


After the appointment, I asked J.J if he is hungry and suggest going out to a place called " "Grill'd" that serves awesome hamburgers; J.J is keen - this is nice that I have got him at a point in which his appetite has resurfaced. A lovely uninterrupted lunch is had and we drive back home.
I have 30 minutes once home, and use it to check email before I have to head back out to get Arwyn early from school. She's pissed at me for picking her up early as she was finally getting to play on the school yard equipment due to a break in the rain. We drive to another doctor's appointment for myself.
Now... throughout J.J's cancer treatment, my own treatments have taken a backseat; J.J and I will often joke around saying he " stole my thunder". I've never had a problem with it ... until today.


I needed to have a physical performed for my work, as well as a routine Pap Smear (WARNING - I am going to speak about the lady bits here). It is in the middle of the Pap Smear that my doctor who has their fingers way up where the sun don't shine, starts talking to me about J.J - How is he? How's he going? Any problems? How's his treatment? - WTF? Excuse me, this is one of the most uncomfortable and somewhat humiliating exams a woman can have, your pressing on my ovaries and basically using your fingers as a swizzle stick, CAN WE PLEASE JUST FOCUS ON ME FOR A MOMENT??!!!


Humiliation over, I get Arwyn ready for her first ballet lesson of the year and she is very excited. Again I have to take Arwyn out earlier than normal and again she is pissed at me. I explain to her that we have to pick Daddy up so we can leave for the hospital so that he can have another round of radiation. I pull into the drive-way and beep the horn several times just in case J.J was still asleep. At this point we are running late and still have to combat traffic and afternoon rain.
J.J slides slowly into the car, " No need to rush". Why? "Uhumm, well.... the appointment isn't at 5pm like I said earlier..." When is it (gripping the steering wheel)? " It's 5:45pm."


In my head I'm kicking down doors and taking a sniper rifle to the top of a bell-tower in Grand Theft Auto mode taking head shots.
I sigh with a half grimace half smile upon my face to let J.J know that I'm angry...kinda...but I'm kinda okay with it as well... kinda. It's enough that Little Miss is pissed at me for taking her out of her classes that she is enjoying so I try to move on..... grrrrr ...... we continue driving.

" Can I just tell you one thing?" J.J asks with a sheepish grin on his face.
"No, no you can't. I don't wanna hear that you love me. I don't wanna hear that I'm beautiful."
"Oh, well, I wasn't going to say that. Emma the speech pathologist rung and tomorrow's session is cancelled as she has broken her leg and needs surgery."

Poor Emma but at least my Saturday is a little easier. And he was going to say those things - I know he was. We stop at a light which gives me time to take some photos for the blog. J.J is looking particularly depressed and rundown yet when the camera clicks he gives me the above photo. Arwyn goes for the kidnapped gagged look - comedians this family is, comedians. Now that we are going to be out longer than anticipated, Arwyn gets to have McDonald's for dinner, it's either that or a screaming hungry 5 year because I just do not have any other food on me and I didn't expect to be out for two and a half hours.

Arwyn fed, and entertained we drive home in the dark and rain. I'm getting over the rain, I love it usually but the constant driving in the rain sucks.
J.J's head looks a little redder tonight. So far so good, the skin hasn't hit the burn factor yet, nor has the tumour concave either.
On the drive home I tell J.J that he can now tell me he loves me and that he thinks I'm beautiful.
"I love you. You're the most beautiful girl I know."
I smile and say " I know".


J.J.: I try to give Lily as much support as she's given me today. The appointment goes well, although the doctor gives her a quick glare when she talks about me dying. The appointment over - we go to Grill'd. I want to do a dance like in "White men can't jump" singing we're going to Sizzler - only this time its Grill'd. More importantly, we are eating child free! I love Arwyn, but man she can suck all the fun out of eating out. That being said, she was awesome at Sake a few weeks ago, but it is fantastic to sit down with Lily, each of us reading a paper waiting for our food, and then eating it without rush.
Bliss.
And the burger rocked.
Back home. I'm tired and feeling queasy so its time for a quick nap. My loving bride leaves me to sleep and takes Arwyn to the doctors with her.
Thanks babe.
Now, I have to break the news to her about the radiation appointment being later than we thought. I think about NOT telling her and just pretending that they are running late. I choose the truth. Turns out, the team actually was running late. But, we get out of their at a reasonable time and head on home.

SATURDAY:


Lily: Attitude from Arwyn all this morning and I am on my own. Is this what it is going to be like. Two swimming lessons followed by Jazz and Tap lessons and more fricking rain. I'm stuffed up, my head is swimming in mucus and I just feel blah. I think I cried into J.J's shoulder today and asked, begged him to look after Arwyn if he was feeling up to it just so I could get a break from her. I lay in bed watching TV in my pyjamas. 


J.J.: Lily and Arwyn come home from swimming lessons - Arwyn storms past on her way to the shower. Hmmmm, this doesn't bode well. Lily follows quickly, telling our little princess off for her behaviour. She gets dropped off at dancing and Lily gets comforted by me and I tell her I will keep Arwyn out of her hair for the day. She didn't ask and wouldn't have had too. Arwyn gets lectured from me about her attitude, she apologises to Lily and she and I settle in playing her Scooby-doo version of Candyland (don't ask) and then the Wii. Later in the afternoon Lily reappears and Arwyn goes up and says "Mummy, you need a hug and a kiss to feel better." She shows her compassion, instantly erasing any desire to drop kick her. "I don't think that hug was enough, have another one." How can you stay upset with that?



SUNDAY:


Lily: Today will be spent pretty much like Saturday except I'll be adding my paperwork to the mix. Going into Week 3 of radiation and I am drained.


Thanks the Powers that be that Arwyn is an angel today, happily playing in her room , allowing J.J to sleep and me to rest after yet another day in hell. Love you so much baby girl.

 This morning I am able to capture this moment between father and daughter, the two most important people in my life.

Week 1 of RADIATION:

(Please note: if you are reading this blog for the first time, you need to start with the post entitled " The reason" which can be found in the 2011 Archive)

Blog entry preceding this one is "With a little help from my friends".

Week one, day 1:

MONDAY:
Lily: Well we have gotten off to a marvellous start. Last night as J.J and I crawled into bed he sighs a little and says something along the lines of "Well first day of radiation tomorrow", I reply " Do you know what time yet it is?" " Yeah 5pm."

"5pm?? Are you kidding me?? Why didn't you tell me?"
"I did tell you. I'm sure I told you."
"No you didn't. If you had told me I would have been organised. Shiiiiiiit!"

I had intended on watching TV in bed last night while J.J slept but Oh my god I was angry. Let me explain humble reader - I run a daycare (childcare) out of my house. It's a small legitimate business, regulated  through an outside company to ensure that Australian standards are maintained. This means I have people who rely upon me for the care of their children while they go off to their own jobs etc, so while I have my own family who relies upon me to keep it together I also have several other families who depend on me. Talk about pressure.
A 5pm start time for radiation means we have to leave our house at least an hour before the start time to ensure we make it to the city on time. So at 4pm, I am still working and I haven't arranged any alternative arrangements for children to be picked up earlier to allow us to get to the appointment on time.
Shit!
At 10:33pm in the dark I hesitantly stumble outside of the bedroom to go and watch TV in the lounge room, annoyed that I hadn't been more organised. I'm angry at J.J but I can only be for so long as it's not his fault. I can't blame this non-telling me on his man-ness  - it's the tumour (and I hate the accented voice in my head that always replies with " It's not a tumour" - Arnold Schwarzenegger from Kindergarten Cop. Storming out of a bedroom is very hard to do in pitch black, I think it has taken me about three minutes to go from my side of the bed to the bedroom door which in any normal lit storm out would have taken five seconds. As I move into the hallway I say "It's very hard to do a storm out in the dark" in the hopes that J.J knows I'm not really pissed at him.

It's at least 12:32am before I am back in bed.

By 7:45am this morning, all my parents are informed of my lack of organisational skills and the problem is solved, I just hate disappointing people in any way.

It's still so early in the morning and already I feel exhausted - mentally and physically.

Midday:
Lily: Initially I wasn't going to include this thinking it may start more shit in my life that I just do not need however it goes back to the post of "What they don't tell you in the cancer pamphlets" post and the religious folk that come out. Today we were visited by an aunt and uncle of mine. They are the relatives that you have, that you acknowledge and that's pretty much it - and for me, it's not necessarily my uncle as he's never been pushy with me, it would be his wife, who I am only related to through marriage. She really burns my biscuits people! She's the kind of person who points out all the things wrong with you and you haven't even spent five minutes with her.
After Arwyn was born every time my aunt saw her she would tell me that there was something wrong with her. Who does that? She's frustrating because she is so short-sighted and narrow-minded and there is no room to disagree with her because she is such a zealot. I'd be embarrassed by her if I had to be in a social situation with her outside the family confines. Now when I go to her house, I am respectful of her beliefs, I don't mock, I don't inflict but I will respond to bigotry.
Now they asked to come over to show their support for J.J which I thought was nice and lovely yet I said to J.J before hand that if she comes over and starts talking about religion, I was going to shut the conversation down because we just aren't interested. As I was working at the time she came to visit, I was up and down and only getting parts of the conversation; it wasn't until I could sit down for longer than 5 minutes that religion was immediately turned too.
I love J.J more than words can say. And I love that he can remain level-headed and not get emotional like I do. But within 5 minutes I was in tears because it was " God's plan that J.J had cancer", which I responded with " I don't believe if there was a God, that he would give my husband who has never done anything wrong an incurable disease as well as inflict the same disease that could possibly also kill our 5 year old who is the most innocent of people - there is no plan, it happened." (doesn't make sense to me now or then but I was emotional and crying at this point). She then responded back with " Oh, it doesn't matter if you have been good or bad, as you'll still go to hell unless of course you have "trust in God".
"Trust in God? What the hell is that?"


(Rant done).

5pm: We are at the hospital, Arwyn deciding to wear her Cinderella hoop dress in which always gains favour with any adults that see her. She loves the attention. Now feeling like old pros of any waiting room Arwyn and I make ourselves comfortable. She finds her two favourite toys while I go and change the channel on the TV to something Arwyn will watch. With kindle in hand, I flip through (hardly flip with an electronic device) trying to find a Charlaine Harris "True Blood" novel to read but alas I've finished the ten novels I have of hers and will be forced to purchase her latest novel.

J.J: Well, what can I say - I'm certain I told Lily about what time it was early in the week.
Oh well, one way or another I would have gotten there. I just hate upsetting Lil, she has so much on her plate and stupid little things like this just add up and cause more annoyance.

What an interesting day. It's not everyday I'm told I'm going to hell.
I don't like these people. It takes a concerted effort to keep my contempt and ridicule of their beliefs under control. I suspect some ulterior motive from them coming, but think maybe they have perhaps discovered the love their beliefs profess instead of righteousness. I was wrong.
It started innocently enough. An innocuous question about how I am doing and how I feel about what is to come. I responded truthfully - I am fine about it. I can't change it, so I'm not going to worry about it. That answer didn't sit well. I was meant to be afraid of dying, afraid of the afterlife, afraid of god. I explained that I was going through life with a clear conscience, that my heart would be lighter than a wren's feather. Apparently, that is all well and good but it won't do me any good - I was still going to be going to hell, along with millions and millions of others. There was no explanation for it. I was just going to go - and they weren't.
It made me think - I actually hope Tom and his good buddy l. Ron were right and the spaceships will be coming.
But I digress.

Well, it seems like routine showing up for more radiation, I was a little disappointed to not see any of the 'old' staff there tonight, but hey the more the merrier. I saunter into the room and wow, its a brand spanking new machine! I get poked, prodded and positioned on the machine, my 'death mask' is snapped into place, and its snugger than when they made it, in fact its a whole lot snugger. Then there is more poking and prodding. Finally, the radiation treatment begins  - I see a bright blue flash and I'm hit by a smell of ozone with each dosage. I'm not claustrophobic, but by the end of the 30 minutes I'm strapped to the table I'm getting a little annoyed.
While the techs and docs reset for the radiation to the arm, I ask about the smell and the flash.
"Uhmmm, there's no flash"
"I know I saw a flash, it was really bright and blue and white a sort of neon blue or the colour of butane"
"Yep, still no flash. But, we hear that when people get radiation around the optic nerves."
"Hmmm, so all in my mind?"
"Yep."
"Awesome, visual hallucinations straight off. What about the smell?"
"Oh, that was real."
This is going to be interesting. Around 30 minutes later the headache hit me, it didn't last long, but it doesn't bode well.

TUESDAY:
 J.J. - Well, we went for day two of radiation today, and it was much faster than yesterday. The mask was just as tight and so close fitting it creates an overwhelming sense of claustrophobia. More of the burning ozone and blue flash, which I found out is actually the radiation escaping through my retina.
After the treatment, we have a sit down with a nurse. She, dutifully, goes over all of the do's and dont's - we've been here before done that, heard this song and dance countless times over the last 18 months. She tells me to wear a hat. And tells me my Yankees cap isn't a hat - a broad brimmed hat. Caps are the silliest invention ever. I have to laugh.
Of course, I'll wear a hat. I don't want to get skin cancer do I?
Then she talks about eating well. I have to mind the things I eat. All healthy and portion controlled. I can still eat junk, but I have to have plenty of fruit and vegetables. I do openly scoff this time. I have a truncated time table - steamed brussel sprouts and green beans have a very low priority on my list of yummy items.
Lily looks at me barely able to hold in her own laughter at my attitude towards Bacchanalian gluttony and epicurean delights.
Whether she knew it or not, the nurse broke the tension on what had been a rocky day.

Lily: Rocky day yes..... all my doing of course (no sarcasm at all - I really was to blame).
You see I work from home providing in-home childcare. More experienced then a babysitter, I have an early childhood teacher's degree, yet not as many children to care for in a centre situation. My little small business has allowed me to earn a good wage (not great but enough to keep us comfortable) and take care of our daughter in our own home. The plan was to continue working from home until Arwyn was in school and then dump the home business and go out into the world so we could regain our house back as purely ours. And then J.J got sick. I shudder to think of the situation we would be in if I had of had an outside career. The amount of sick days I would be entitled too would have been gone in the first six months of J.J's cancer treatment. So for this, my little business, thank you. Thank you for allowing me to continue to earn money, take care of our daughter and now take care of my husband. With this business however come some downfalls - the parents of children I take care of.
NOW - before some parents who may be reading this get their feathers ruffled, I have had some good parents, some GREAT, FANTASTIC, I WISH YOUR CHILDREN COULD STAY FOREVER parents (Corrina & Kev, Kylie S. & Brett, Bryn & Emma etc), these parents and their children make this job a pleasure to be in...... however like anything, there is an opposite and the opposite parents are the ones that make me rethink child care altogether.

I was recently under contract with a parent who needed flexible care. The work started off okay, she even paid me on time the first week, and then gave me a partial payment the second week.... it was then that she kept slipping on the payments. She'd promise to pay every day I worked for her and I...believing in people's innate goodness believed that she would pay. And then it happened, instead of going from owing me $200.00, it jumped up to $900.00 since she was utilising two childcare services (receiving benefit on the other centre). I expressed concern to the parent, that I was worried she was getting in over her head. She smiled and said I was being silly, and she was getting paid at the end of the week and would pay me on the weekend, and could I still work for her the week before Christmas. I uhummed and erred about it with J.J already recognising the signs of a "runner". We both agreed that if I didn't work for her that week, she would say I was breaching contract and use that as an excuse not to pay the $900.

Well suffice to say, I did the work, putting the total owed fees to $1203.15 and she did a runner and has been avoiding me ever since.

This has been providing me with extra worrisome nights. It is the thorn in my side, going deeper and deeper with every avoided phone call. And the parent knows the situation with J.J, knows how much pressure I am already on and she adds to it. This morning after weeks of trying to settle the debt amicably, the parent finally picked the phone up (only after I used the hidden phone number display). Once I had identified myself she quickly said it wasn't who I was asking for and used a different name telling me I had dialled the wrong number. I redialled after she hung up on me, going straight to message box and was greeted with the same familiar voice recording. It had been her.

I was so enraged, and so bitter. It's enough to deal with cancer but to deal with truly heartless people who have used me on top it- it did me in this morning. I was crying tears aplenty. And Arwyn, oh god Arwyn with her loving and compassionate nature hugged my leg and said " What's wrong mommy?" (Canadian influence on the mommy instead of mummy). My beautiful girl started singing the lullaby that I sing to her when she's sad/sick or just going to bed and said to J.J " Daddy, you sing "Baby Mine" to mummy too" (the Australian influence coming back in).

It takes me awhile to be happy this day. It wasn't until we were coming back from radiation that I genuinely smiled and that was several hours after the morning shit that went on. Bring on a better day for Wednesday.


WEDNESDAY:

Lily: Despite a few mishaps with regard to potty-training one of the day care children (think Lady McBeth trying to get the blood off her hand in relation to me trying to get something off of my hand - it'll never be clean!) :) the day was relatively normal.
J.J has become slower already in his movements and his once energetic self (staying awake on the lounge to watch TV) has gone (falling asleep on the lounge). I do not recall the radiation working so quickly with regards to the side-effects however it is a different area being treated as well as the arm.
J.J also woke up with the warning that he was feeling irritable which didn't help knowing that today had some daycare kids who aren't exactly ideal for our situation.

Radiation treatment also runs normally. Arwyn being the only child in the waiting area  shows off for the other adults.

On the way too and from the hospital we have to drive past a cemetery, today as we drove past, from the back of the car we hear Arwyn say excitedly, " Look, there's the cemetery." a few moments later in a forlorn voice she follows up with " I wish I was in there."

WTF?? This coming from a 5 year old? I didn't expect this emo phase to be in so soon. Oh my god, my little girl is depressed - - This ranting goes on in my head for what seems an hour, worrying about Arwyn being melancholy at such a young age etc - thinking it should all be sunshine and lollipops.
In reality barely a few seconds go by where we ask her why she wants to go to the cemetery. Arwyn continues her train of thought with " Well, that's where all the mysteries are solved and Freddy"

Oh THANK THE POWERS THAT BE, it was just a Scooby Doo reference.

J.J - Ok, I'm getting a little annoyed by the radiation treatment this time. It's really knocking me on my arse. So incredibly tired. Plus, my memory is shot. It's like being in a haze.


THURSDAY:

Lily: Have taken photos of the tumour so we can track the growth/reduction.

Normal day thus far - still very tired.....I don't think that is ever going to change.

Today seemed to settle into a routine. I woke, got Arwyn ready for the day, got me breakfast, worked, drove to hospital, waited and entertained Arwyn in waiting room while giving her her dinner, did a small grocery shop on way home, got Arwyn showered, put her in bed, ate dinner and now playing scrabble online with J.J as we wait for "Vertical Limit" to start on TV. It's a kind of embarrassing movie to admit to watching, even liking but it requires no thought, there are two Aussie characters that just make the movie fun and the scene in which Chris O'Donnell's character makes that jump across the cliff faces just has my stomach flipping upside down every time.

While the movie is running, J.J and I still play scrabble and I am also working on the " Arwyn Project". We recognise the fact that J.J probably wont survive the year *fingers crossed he does* but we are getting prepared. We know that he will miss out on some major events in Arwyn's life and it is for that reason that the "Arwyn Project" was given birth. We went out and bought a wooden box in which to hold as many cards / letters as possible; we bought probably $100.00 worth of hallmark birthday / Christmas cards and while J.J has lost the ability to write, he'll type his message that he wants in her card and then I will print it off, place it in the card and do the creativity beautification to the card so in the years to come, Arwyn will have a message from her dad.
















It's not until 12:15am that I realise how late the hour is and it is at this point that I discover I cannot find my mobile anywhere - it's my alarm clock - I need it.

I head downstairs to the car to search and come back empty, we use J.J's phone for now - sleep occurs sometime after 12:30am.

J.J: On the drive to the hospital Arwyn continues pointing out the cemetery every time we pass it.  Arwyn will ask her 5 year old questions. " What's in there?" "Why was it built there?" etc. Lil, and I want to stress this, Lil and not I - comes out with 'it's the dead centre of town.' and 'everyone's dying to get in there.'
I'm a little proud and disappointed by this as they are the dad jokes I'm meant to be making. The radiation treatment seems to be moving faster, which is a relief.

FRIDAY:

6:45am - Lily: AWAKE!! Tiredly so. Arwyn's up already waiting for me, arms folded, tapping her foot as if to say " Why weren't you up earlier, I"m hungry and I want the TV". It's all said in a cute and endearing way not like a Brat at all so I let it slide.

8:30am - The morning routine is done and I can finally go to the car and search for my phone in the daylight.

MOBILE PHONE FOUND!!!!

10am - Oh my God, Arwyn is having a really emotional day, this is so unlike her, really. She's upset about the smallest of things - what the hell is going on??

13:03: I feel like I haven't stopped. Day done yet?

I'm looking tragic - I'm feeling tragic.

I think by 3 in the afternoon I have done everything that everyone wanted me to do for them. Now to finally have my breakfast. :(

J.J. - I think I should change my name to Andy Capp as I keep  falling asleep on the lounge. My appetite is flat and apathy is overwhelming. The day ends and I am ecstatic that I get two days off from this crap, hopefully I'll be able to recharge a bit.


SATURDAY:
Lily: Two days of rest, no need to drive to the city as radiation only runs Monday - Friday. J.J and I are both so tired that we sleep through my mobile alarm. Damn it!  J.J turns to me and asks me what time Arwyn's swimming lesson is. I flick the phone on see it is 8:15am and reply " We are half way through the lesson right now" as I slip one of my boobs back into my night-gown (I swear they have a mind of their own).
I get up rather too quickly and stumble to the bedroom door only to find Arwyn camped out in front of it with the two cats by her side. Now I feel like a bad mum. I asked her why she didn't come in and wake us and she replies that " I'm letting you two sleep in" (My heart melts).

Having missed the swim lesson, J.J informs me that he wants to see the movie "Tinker Tailor Soldier Spy". While I would watch it in the comfort of my own home, the thought of paying to see it, just isn't for me so we decide that while J.J is keen and able to get up and about that he go to the 10:00am session of the movie and Arwyn and I will go and see Happy Feet 2.

Will and Bill Krill own that movie! Love Brad Pitt and Matt Damon. Krill are awesome!


SUNDAY:

8:30am - 1:45pm: Kitchen cleaned, bathroom cleaned. Bulk dinner meals for Arwyn made, dishes done. Bed stripped, towels, bath mats washed, Crab-grass weeding (ongoing 6 root systems dug up - discover at 16:57 that by digging them up I have only increased my chances for more crab-grass weed to grow - Shit!), hang out washing, bring in washing, make bed, take up bins to the top of the hill for tomorrow morning's collection (I don't mind the work out this provides yet I wish I remembered to empty all the bins before I take this "hill-master" class.

9am - J.J moves from the bed to the lounge where he has net/TV access.

Have a shower at 2pm J.J still hasn't moved off the lounge, in fact he has settled in for a sleep. It's like he is almost non-existent. He's barely spoken to me (warranted I have been in clean mode for the day), I think he has had words with Arwyn. Radiation is blowing - and this tiredness has happened so quickly. I don't remember it being this severe so fast. Though I question this as my mind does not remember things as easily as it use to.

Two more days until Arwyn attends big school for the first time.

At 5pm - J.J is finally awake, it'll take about an hour for him to come out of the sleep stupor.

My body is aching from today's activities - is it bed time yet?

Tomorrow begins Week 2 of radiation.

With a little help from my friends...

(Please note: if you are reading this blog for the first time, you need to start with the post entitled " The reason" which can be found in the 2011 Archive)

Blog entry preceding this one is "The week that was chemo (ROUND 2- of the current Treatment)".

"When you're in your thirties it's very hard to make a new friend. Whatever the

group is that you've got now that's who you're going with.You're not interviewing, you're not looking at any new people, you're not interested in seeing any applications. They don't know the places. They don't know the food. They don't know the activities, If I meet a guy in a club on the gym or someplace I'm sure you're a very nice person you seem to have a lot of potential, but we're just not hiring right now. Of course when you're a kid, you can be friends with anybody. Remember when you were a little kid what were the qualifications? If someone's in front of my house NOW, That's my friend, they're my friend. That's it. Are you a grown up.? No. Great! Come on in. Jump up and down on my bed. And if you have anything in common at all, You like Cherry Soda? I like Cherry Soda! We'll be best friends!"

From the Seinfeld Script "The Boyfriend (1)"

Written by Larry David and Larry Levin.

The Early Years:

Lily: I liked Seinfeld. I was never a huge fan, but if it was on and there was nothing else of interest on TV, Seinfeld was always my program I'd go to in need. The above quote has always seemed to resonate with me, in particular after I moved away from my hometown where I had lived all my life and what Seinfeld says about friends is completely and utterly true. 

In my childhood you had the "neighbourhood kids" of all ages plus the friends you made in your own class.  Someone would hang out in front of the house and the next moment we're playing basketball in the driveway. You lost one friend to a move or to them being a complete butt wad but a new friend was just around the corner on a bike.

I have some lasting memories of my neighbourhood friends. Lara and her sister Karen, Amanda and her brother Nathan, and finally Adam and his brothers. 

Lil & Amanda K.

Karen, Lil & Lara

These were my go to people. Together we were always making cubbies along the creek embankments next to our houses. We would camp in the backyards and put performances on for our parents. We had  sleep-overs, bullrush (tag) in the front yard, road-tennis, cricket and hide n seek.  When Adam and his siblings moved into the neighbourhood the games became a bit more brutal (boys will do that) with tackle bullrush, brandings with a wet tennis ball (so it would hurt more), water-fights and footy. 

Dressing up, Amanda K. and I married her little brother Nathan to Lara. Karen was the flower girl and I the bridesmaid.

Rachel and Lil dressed up for school social.

When I wasn't doing something with this group just up the road was Rachel who I had known since kindergarten. She was in the white house up on the hillside where the majority of her family lived upstairs while her grandmother lived downstairs with her Siamese cat "Sam". I didn't like Sam. Beautiful cat yet he always seemed to lay in wait ready to take a swipe the moment you walked through the doors. Next door to her was Kirsty. Kirsty was the friend willing to do anything. You could dare her to swing from the rafters and she'd do it blind-folded, one hand tied behind the back while smoking a cigarette. I have a few memories of Kirsty. One in which her, her brother Darryn, my brother and I went up the hillside into the bush to smoke cigarettes. For me they were my first and I absolutely hated it. My other predominant memory I have is being out the back of Rachel's house in her little log cubby house and Kirsty swinging a hand-axe around near my toes. That was the day it felt as though Rachel and Kirsty were ganging up on me (butt-wads), also the day I decided never to be their friends again and yet a few days/weeks later we were all friends again. All kids are butt-wads, myself included.   

Adam and I were the same age. Early on in the relationship I was given a Christmas card from him that ended with "love Adam". He was teased by our older siblings and he took the card back off me, scribbled out "love" and then threw the card back at me before running off. Right then, I knew we would never be boyfriend and girlfriend (not that I wanted that because boys were icky in that way) and somehow a friendship of sorts formed. Probably out of boredom but after our childhood games we would spend the twilight hours throwing a ball through a hoop and talk about everything and nothing. In high school this continued, however to me, our relationship was more about the girls that I hung around with that had Adam's attention. Could I tell them messages? Could I ask them around and somehow I became a go between for Adam and a friend called Samantha.

I'm sure everyone wishes their childhood could have lasted that little bit longer or in the very least recognise the true value of it. I loved riding my bike around the valley with my friends. I loved fishing for eels in the back creeks, or jumping off the top of the wall down onto the sandy embankments. I loved the bush walking we use to do taking Snake Gully, through the rocks, swinging yourself up a tree onto the rocks to discover "lounge rock" and feel like you were the first kid to have been there.

Of my childhood friends I am friends with all of them on face book. I like having them there. To see how their lives turned out, their families of their own, just knowing I have a childhood connection there is comforting even, if I never speak to them again. I like knowing that if we were both inclined to talk, the opportunity is there.

Friends in my thirties:

The writers of Seinfeld had it correct; it is very hard to make new friends in your thirties. I would actually go and say it was even hard in your twenties to make new friends. And to clarify here, I am talking about the kind of friends that are “keepers”, not just a work mate who you sometimes get together with, or someone attached to your sport /craft / dance club – I’m referring to people in your life where it doesn’t matter where they live, who they marry, what job they do, how many kids they have, how much baggage they have that you have placed in “the vault”, you will always be there for them in needs of peril and vice versa. You may have heard their stories a million times over, you may hate it when they speak the truth about a dress you try on, but it doesn’t matter because in the end, they are one of the select few who “get you”.

For me out of a group of ten to fifteen girls from high school only two have made it to a “still in contact” / “get you” point. This is no disrespect to the girls I have reconnected with on face book who were apart of the group, as I love being able to reconnect with you, it’s just that these two girls…well women, are the ones I ring in times of need, whether it is to share those sad moments or whether it is to share those happy moments in life. They are the ones who when I know I’m coming down there way, I ring them first before my own siblings to let them know I’m up for a visit if they have the time. They are the ones I go out of my way for.


A Sidenote: One girl I would have gone out of my way for was Amanda C. Amanda had the most beautiful spirit ever, we had known each other since primary school and our friendship continued after high school. When I think of J.J and his cancer, Amanda will often come into my thoughts as she passed away from cancer. These days she has been on my mind a great deal as I think of all the things she missed out on getting to do. Then my thoughts will drift to J.J and I'll think of all the things he will miss out on as well and I can't help but get teary. I miss Amanda every day, I think of her often and while her and J.J only met a few times before she passed away, I hope that once he has gone, she'll greet him for me and make him feel at ease as it was something that she could do in an instant.

Amanda C. and I at Kylie's 21st.

Let’s start with Louise, aka Louie, Lou, also known as wench or wenchy-poo. Louie and I met through a mutual friend in high school. She was very tall (my height), long blonde hair and skinny, bone skinny and quiet – that is until you got to know her and then it was an asylum free for all of crazy.  I’m not talking about crazy antics, though for amusement she would often thread her long blonde hair through her sleeves to pretend she had hairy armpits. I’m talking about a level of crazy on the “Muppet” level – which was my kind of girl. During high school, she was at one, I was at another, we really only got together when our mutual friend Rachel (from the early years) arranged get togethers. Even after high school we still hadn’t started hanging out together on a full time basis as she was pretty much a wall flower of fun (sorry louie but you’d never come out with me any of the times I rung). It wasn’t until sometime after the 21^st birthday year that something changed on Louie’s end (she metamorphosed from the caterpillar into a butterfly –tee hee) and I started seeing her out at the night clubs.  Louise had started playing in pool comps at the club as at the time she had been a university student, university students and playing pool was just a given. It was over a game of pool at the Leagues Club, that we reconnected and began the journey to close friends. I still remember thinking "Wow, she looks hot, completely different to what I had known of her in her faded blue jeans and white shirt look."  Was there a little girl crush there? Probably not, more envious of that bloody long blonde hair and the red dress she was wearing. :)

And so it began. There were the evenings at the night clubs, the weekend long drives in the Zed X (not sounding romantic at all), the car that bled money but we looked cool in it and basically we just hung out. She would indulge me by being my photographic muse (seriously the relationship was purely platonic and not meant to sound as Sapphic as this reads back to me). We rode the dramas together of Louise's past boyfriends and she dubbed J.J as "Duty Free Canadian boy" once he was on the scene :)  Louise was often disgusted at me when I would pay someone to tune our car and would try diligently to teach me how to change the oil. And life went on, and the friendship never faded. I asked her to be a bridesmaid to our wedding in the only classy way I could (the female toilet stalls of the Leagues Club), she accepted and life went on. 

Even after J.J and I moved to another state of the country, we still remained in touch, phone / email. Every time we came to the Coast, I'd make a point of visiting Louie and vice versa. She was... is my sister and always will be. And I hope she knows how much her friendship means to me. I would gush a bit more but she's probably still giggling from the " weekend long drives" paragraph as her husband looks at her with an arched eyebrow as if to ask " is there something you're not telling me?". Relax Leigh, there was only that one night of love we shared and I"m sure it doesn't compare to your own style of love-making.

Disclaimer: Especially to my father - no I am not now nor have I ever been a lesbian (Not that there is anything wrong with that), I'm just joking, having a laugh, teasing a friend's husband....Or Am I? ;)

My other sister . . . Kylie.

When speaking to others about Kylie and I think I have already mentioned this in another post, she is my opposite in personality. She was confident where I was not, social when I was silent. She would drag my sorry arse from bed in the wee hours of the morning to go out and do things because that's what she did. She is always on the go, always burning energy. She could let things go whereas I held onto grudges. 

We first met, when we were eleven. Our mothers were both playing/umpiring Netball out at Bateau Bay Sports centre and together we hung out. Kylie dragged me halfway across a road to go and call out to a group of teenage boys and I, still firmly attached to my childhood was shocked and extremely shy of going anywhere near boys.


Kylie was a shock to my system many times through out high school. We weren't exactly friends, more like acquaintances with mutual friends. Together with our mutual friend Samantha (or maybe it was Jo) we went shopping one afternoon and it was there that Kylie right in front of my eyes shop-lifted a hair dye from the local pharmacy. She tucked it up the sleeve of her jumper (sweater) and shocked is the only word for my expression. I'm giggling as I type this but I remember my reaction would have been the equivalent to seeing someone killed (Yes, yes, I lived a very sheltered life) :)


The next memory I have (and only because Kylie had reminded me of recently) is one of those high school yard things that only a girl would think to do. We had been riding on the school bus home, Kylie had been sitting in front of me with our friend Sam and for whatever reason (I still say you had to have said something to piss me off Ky) I put a Turkish delight chocolate in Kylie's hair, mashing it up to ensure it would be hard to get out. I remember the incident yet not the details, and I think...I think it was either year 7 or year 8 that it occurred.


As school continued, I believe we begun to like each other a little more as we would see each other around the netball courts on the weekend and we continued to have mutual friends. It wasn't until year 12 or shortly after my eighteenth birthday (legal age for drinking) that Kylie started ringing me on a regular basis. 


And thus began the Leagues Club /Club Troppo days. Probably a good four or five years of clubbing were had; drinking, playing pool, playing the pokie machines, drinking, dancing, dancing, dancing, exchanging ice between our lips to tease the guys dancing around us. In this time we were playing indoor netball together as well as taking care of Kylie's son as she took a Chinese food (or was it Thai?) delivery job on top of everything else she did. We went to heaps of movies together, sometimes seeing one session and then crossing over to another movie (without paying - scandalous right? Such a bad influence Kylie. :) 

Now there are a few things about Kylie that just wouldn't make Kylie, Kylie. If you have ever been in one of Kylie's car, you will know that cleanliness is not her friend. Many a time I had to ride "shotgun" with my feet up on her dash board as there was simply no place to have my feet for the amount of clothes, empty food, shoes that were on the floor. It was one of these times, I believe it was the white car Kylie owned that we were on our way to the big shopping centre in the area. My feet were up on the dashboard when one of us, probably me noticed the biggest, hairiest, huntsman ever to be born crawl out from Kylie's air conditioning system and come towards me. I screamed like the little girl I am and begged for her to pull over yet like any good friend she laughed at me hysterically, tears rolling down her face. It was then that the spider started crawling to her yet calm as, Kylie let it climb on the windscreen in front of her before it started coming back to my side leaving me hysterically clawing at the window (with no handle) to get out and Kylie still laughing at me.


Friends (big smile on my face), if you can't laugh at a friend's misfortune then your just not friends. 


Now... to add to Kylie's crimes as a friend.... she's also a bed hog. After a winery weekend with my actual sister and Kylie (Louise were you there as well?), Kylie and I shared a bed together...wait, let me rephrase, Kylie had the double bed and I had the bedside table next to the double bed because during the night, misshogsthemattressalot encroached herself on my side thereby kicking me out - and she'd do it with a smile and I could never, ever stay mad at her.... I do however remind her of her crime wherever possible, hence it being here. :)


Now, her final crime but it actually just turned into a coined phrase...because of Kylie's social network (she knew everyone), whenever we went to the club, one moment you'd be talking to the girl and the next she would disappear - it was something she did, I got use to it, and even appreciated it on some levels as it allowed me to break out of the "shy"  shell I had and if I was going to have fun, I had to rely on myself than my friend to make sure I continued to have fun. (so thanks Kylie- I promise no sarcasm - you gave me back my confidence, intended on your part or not I don't know or care, but thank you none the less).


And we have remained friends ever since. She's the type of friend where you can pick up from where you left off. I don't know how she feels, but to me she is my sister. We have seen each other through some horrible horrible times and we have had many many laughs, lots of fun and I know I can always count on her. 


With J.J's diagnosis, we started thinking about things we thought we wouldn't have to think about... if he dies and then something happens to me, who would take care of Arwyn? J.J and I went through our options and Kylie and her husband Stu were who we wanted. I love them both. They have our sense of humour, they can be fun yet guide with a firm hand, in so much as what I think both our deaths would do to Arwyn (NOT THAT I PLAN ON DYING PEOPLE - I plan on living forever, but  you have to think about these things), I feel that Kylie and Stu would not mess up Arwyn any further after our deaths. I feel that they would guide her, love her, make her apart of their family. Family is important, and Kylie and Stu are family to me and should something happen to us, I want them to know that I trust them completely with the most precious thing J.J and I created together.

Arwyn aged 2.

Again, I want to gush more about them, let Kylie know how proud I am of her (even Dad is always telling me how highly he thinks of you Kylie for what you have done with your life).
Oh I wish I could articulate more about how I feel- but the brain is tired and this post is coming to a close.

I love my friends, not just the ones I have mentioned here, but the ones I have been able to get back in contact with on facebook. I want to thank the new ones I have made like Corrina who was an absolute star at Arwyn's 5th party behind the scenes helping me clean as J.J was unable to help; the old ones, the family, the people I have met on the Neurofibromatosis Support Group and the Fibrous Dysplasia group. I want to thank all the people who voted for us in the CUA competition, that will certainly be something we'll never forget.


I want to say when the time comes, I will need you all and I hope if I ever ask for support that you will be there because I know at J.J's end, I don't want to be alone in the months after. There will be days I will say fuck off, leave me alone - but please understand I need you -


" I don't know why, but every now and again in my life - for no reason at all - I need you. All of you. " - Sara from "The Labyrinth".