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.
Love to you all. Loads of it. x
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