19 Things we never thought we would say or do or hear at our age.

(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 " Dem Bones, Dem Bones".






1: Searching the Internet for urns.


J.J has decided on cremation which suits me as that is what I have also chosen for my remains.  J.J wants a 2001 space odyssey monolith while I want something a little more functional as J.J should be functional in his after-life hence wanting a clock urn, that way I'll get to refer to him as Father-Time for Arwyn.

2: Lily: " So when your time comes, where do you want to die?"
   J.J: "At home, with you and Arwyn".
   Lily: "Which room?"
    J.J: " Our room."
   Lily: " Really?... On our mattress? The one I have to sleep on after your dead?"
J.J: " Yes of course, and I want you to hairspray my indent so it stays for all eternity".
J.J: (a few minutes later) "And, I meant, WITH you and Arwyn." (Lily gives J.J a dead-pan look of "fuck you, we aren't all dying together as a family - that ain't happening").


3: J.J: I want to be stuffed and mounted on the lounge chair as a constant reminder to you of our love.


4: Lily: "You are not allowed to have your ecto-plasmic way with unholy spirits in the after-life, you have to wait until I'm there." (three minutes later) " Okay....that's being unfair, you can whore around with some spirits but when I die all of that loving comes my way".


5: Trying to give J.J a " stop being depressed" speech the following is said:


Lily: "Honey, look, I know there is nothing I can say to get you out of being depressed. You deserve to have your moments to wallow. But you're not dead yet, so stop living like you are. I mean I could get hit by a bus tomorrow."
J.J: " That would be convenient."
Lily: (double-takes) ,"What the fuck? Up yours, I plan on living forever!"


6: Lily thanking J.J for having Cancer as it has become a perk to get out of going to social events.


7: Upon being told that J.J had cancer, Lily got teary and then said " Great! You'll do anything to beat me at losing weight.


8: Lily & J.J discussing death.  
(WARNING - Lily discussing sex, family/friends avert your eyes)
Lily: Well, at least you are going before me - I always wanted you to be the first to go.
J.J: That's fine, cause then I get to go and have ghost sex with Marilyn Monroe.
Lily: Fine, do that then. You go and have sex with some dead lazy cow, I'll be here on earth having sex with machines for the rest of my life (pretends to sob). (Both go into a fit of giggles).


9: 
J.J: Trying to figure out which of my single friends I should push for a hook up with Lily after I'm gone.
Lily's take on it is more of "you're trying to pimp me out"?
J.J: "I was thinking more along the lines of Moe Sizlak showing up to court Marge when he thinks Homer is dead. I'd do the same for all of my friends".
Lily: "That sounds worse, so you'd turn me in for a friends widow? Is that the epitome of bro's before ho's"?
J.J: "No, of course not, I'm just trying to find someone who will be able to financially take care of you and won't be able to live up to me in anyways whatsoever. But is still considered a catch.


10: J.J & Lily playing cards while J.J has chemo.


Lily: Look, just because you have cancer, don't expect me to go easy on you. I play to win. I plan to crush you into the ground with my heeled boot.
(later on during more cards)
Lily: Look you got cancer of your own free will, so I ain't going to let you win.




11: Lily taking advantage of J.J in his painkiller / chemo sleep deprived state by using the newly bought label maker (Arwyn's first year of school = a given purchase) to stick a label on J.J's butt with " Property of Lily's, hands off!"


12: During Radiation Arwyn has us both worried:


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, Oh my god, oh my god, 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.


13: Lily: Hearing my aunt tell my husband that he is going to hell just because he doesn't have "trust in god"  - further hearing her say it is god's plan which I just cannot abide. I usually do not care who people worship - Beelzebub, Allah, Zeus, the TV it doesn't matter to me. I don't care if you have a partiality to a cow, a goat, a monkey, a rat. You can be black, white, red, yellow, green. You can prefer men over women, women over men, - I support gay marriage, I believe it's a woman's right to choose but if you ever set foot into my house again aunt and say anything again to my husband or me or our daughter I will personally bend you backwards so you can kiss your own arse goodbye - now GOOD DAY!
Grrrrr.


14: During a routine doctor's appointment, J.J mentions out of the blue that he likes having the clock radio  (that Lily bought yesterday morning) back in the bedroom.


Lily: "It's a new one".
J.J: " Really? I didn't notice."
Lily: "Yeah I bought one yesterday, I threw the old one out ages ago it was so dusty, dirty and old."
J.J: " Just so long as you don't throw me out when I get all dusty and dirty and old as a clock" (in reference to his urn choice).
(Both giggle away).




15: J.J after forgetting to take a pill this morning, never thought he would need the pill-box Lily suggested buying, especially at the age of 40 " I feel so old". *sniff*


16: Lily who is at times in awe of J.J's music knowledge and taste, never thought she would hear the song "30,000 Pounds of bananas" by Harry Chapin (who the fuck is Harry Chapin? - I still don't the fuck know!) on the way back home from radiation - and that it perked J.J up like he was at Disney World.  Really honey? Take a listen gentle folks...

17: Yes, I've already spoken about this in Week 2 of radiation but it just defies comprehension. While I understand that having a spouse who has a terminal illness my life will be 99.9% taken up with his needs - I have no problem with that, I signed on for this when I married him in sickness and in health .... but really doc, can I just have my pap smear be about me and my vagina???


 "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??!!!




18: While hanging a large picture frame above our bed, J.J informs me that one hook would be sufficient instead of the three that I am hammering into the wall.
"Lil, you only need one, I promise".
" Noooo, what if the picture falls in the middle of the night and hits you on the head where the tumour is. It'll pop it like a pimple and the gunk that would come out would spray over me - that imagery & cleanup is not what I need in the middle of the night - nope three picture hooks it is".


19: So the two of us are watching the pilot episode of "Suburgatory" , and after the dinner scene in which dad and daughter argue with the daughter saying " You ruined my life!", for having moved her from the city to the suburbs, the following conversation takes place. 
J.J turns to Lily and says, " You realise this is the argument that Arwyn would be having with you, if I was to die when she was 15 and you move away from here".
Lily replies with " Nah, wouldn't matter, where we live now still sucks. she'd be happy we left." Lily laughs and continues a little more sincere with the reply, " Why can't you die when she is 15?" 
J.J looks back incredulously thinking " You want me to keep living like this for another ten years?"  Horrified at the idea of the pain and suffering.
Lily: "Ah well, no of course not - I meant you be healthy until then - and then die!"

Dem Bones, Dem Bones.

(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 4.25 of Radiation:".
WARNING: Icky photo warning of post-surgery pictures, past and present.


" The toe bone connected to the heel bone,
The heel bone connected to the foot bone, 
The foot bone connected to the leg bone,
The leg bone connected to the knee bone,
The knee bone connected to the thigh bone,
The thigh bone connected to the back bone,
The back bone connected to the neck bone,
The neck bone connected to the head bone,
Oh, hear the word of the Lord!"  - Words (Unknown), Melody by James Weldon Johnson (1871-1938) "Dem Bones".


Lily: Apologies if the song is now stuck in your head yet when I was thinking about this post, about my upcoming operation associated with my bone disease, the song got stuck in my head and so I pass it to you as the gift that keeps on giving.
Well, on the 20th of February I'll be heading into hospital to have my first major operation in over eleven years. I'm having a maxilla osteotomy; having the bone from the roof of my mouth cut out, shaving away bone on the cheek; and moving my nose a little, for it had been pushed out of place by the diseased bone. I'm loosing three more teeth on the upper right side. This displeases me... there's only so much "freak" one person can take and to loose more teeth, not through poor hygiene or an accident but because I was unlucky enough to be born with a rare disease that weakens bone.
I've spoken about the disease before - "Polyostotic Fibrous Dysplasia" (PFD) - the following web link is probably the best and most accurate for further information should you be so inclined to know more. 
Fibrous Dysplasia.Org


This operation is overdue. I've become "aware" of the pain that the PFD is causing in my skull and when you become aware of it, sometimes it's the only thing you can focus on. Yet J.J came first. I pushed the pain aside, endured it - endure it still. In light of him becoming terminal we decided that it would be better to have the operation before J.J passes away so as not to stress Arwyn out in the wake of loosing one parent. 
I'll be having an Osteotomy - basically the bone being cut out of my face. It is all done through the mouth so no cutting of skin, yet my mouth will be stretched out in all directions and the roof of my mouth cut with the bone being dislodged and realigned.
Not pleasant let me tell you, I've had this type of operation before.


The following photos are the aftermath of past osteotomies, not many people have seen these so please...feel honoured. 

 The lying down photos were probably taken the day I got home from the hospital.

These next two photos were taken with another operation, about 2 to 3 weeks after the op. I was in my twenties with these photos, I wonder how my 30-something body will heal?

PRE-ADMISSION:

Lily: Today (16/2/12) I attended the pre-admission clinic, a five hour long appointment in which I see a member of the surgical team, the anaesthetist, a nurse, the pharmacist. They sell you on this appointment by letting you know it'll take four to five hours. Awesome! However, lucky am I, I'm in and out in under two hours. The only person I care about seeing is the anaesthetist - they are the ones who can write in my chart permission to give me a "relaxing" pill before the surgery. I'm good - usually, but on the morning of the op day, I freak out. I become a little bitch and start twitching with nervous anxiety. I express this to the anaesthetist in detail and she writes me up for at least 20 milligrammes of temazapan for the morning of my op. She even suggests that I take some MS contin (morphine) when I wake up to aid my "mellow" groove.

THE DAY BEFORE:

Lily: Sunday morning and my sister wakes me at 8:30am by sending me a text message asking if I had heard from our dad who is driving up to help take care of me, the house but mainly Arwyn. As children we are forcing him to do the twelve hour drive over two days to make it easier for him, yet of course we still worry - my sister worrying the most however, since I was quite happy to wait until lunchtime (proposed arrival time) before I started my worrying. 

My dad is turning 72 this year and he must have access to a fountain of youth drip-line since he doesn't look like other 71 year olds. I'm not saying he looks twenty or anything, but he still looks the same to me as what he does when he was 50. His hair is still black with only whispers of grey/white starting to speckle through and the hairline hasn't receded at all - he has great hair, I should be so lucky when I'm at his age.

I continue with my cleaning regime of getting the house cleaned for my dad's arrival so he doesn't feel like he is walking into a nuclear waste dumping ground. I've washed and replaced the bed sheets on my bed as per instructions from the Pre-admission nurse and mowed the last bit of lawn, praying to the gardening gods that the mower would not run out of fuel. I've changed the cat litter, so that's all fresh, tidy.

And now that I've cleansed the house with incense sticks, I have nothing to do but wait until dad arrives so we can continue with the next part of our day.

Perhaps it is time for me to pack my suitcase in the interim.

After my dad has arrived, there is lunch, going through what needs to be done and then home to sit and wait for the day to be finished. Dad draws first blood with his granddaughter in the battle of wits of Grandfather versus Granddaughter. 

Battle one:

Last night , Arwyn left her Elmo toy out on the dinner table waiting for J.J or I to change its batteries. By the time dad arrives today, the batteries are still unchanged in which my dad asks me if I was going to change it. I make some remark saying it's not high on my list at the moment and my dad says loud enough for Arwyn to hear that " Your mother doesn't care." What Arwyn heard " Your mother doesn't care about you." Ten seconds later, Arwyn is bursting into tears declaring that she doesn't like what Poppy has just said. Poppy rolls his eyes, hands up in surprise... Any attempts on my part to explain to him the reason why she's upset isn't going to help as he wouldn't understand and any attempts to explain to her that Poppy is only joking also isn't going to help for the exact same reason.

*sigh*

Winner: Poppy.

I'm not really worried about tomorrow morning... about how they are going to slice into my face.....I'm more worried about how Poppy and Arwyn are going to be together...whether Arwyn will actually get to school...whether Arwyn will walk all over Poppy and how J.J will go amongst all this. I'm more worried about the days just after I arrive home from hospital when the carnage will begin and I wont be able to rest because the three of them can not function without me. Not being the Sun here in which I think all revolve around me - it is just the role I have assumed, it is my job, it is my life that I take care of everything...and I just don't know how everyone will go without me being there to organise.

See you on the flip side peeps, I have a 4:30am wake-up call.

MONDAY, DAY OF THE SURGERY:

I'm sooooo nervous - but I can't say anything to anyone. My heart is beating a mile a minute and all I can think of is if something goes wrong, Arwyn will be an orphan. Yes J.J is alive but for how long? He has an appointment today at the clinic and I know the cancer has spread. And now I'm stripping down into a hospital gown. Shit! It's getting closer. I'm okay, I'm okay. I've been asked my name so many times - when's my date of birth? What is the operation that I am having? Hospital policy, I completely understand....just please hurry up and put me out.

I was first on the list but thanks to the sleeping tablets I have fallen asleep; I've woken up and have been informed it is time to do my surgery....I became second on the list and it is now an hour past my scheduled time. The doctors stand around me making jokes and the fucker to my left stabs my wrist with a needle while another one asks me my weight. I tell him and he says, no way you can't weigh that, you look much skinnier - I tell him I love him and then BLACK!!

AWAKE!!!

OH MY GOD I'M AWAKE....WOOHOO FOR ME - I'M ALIVE. I can't speak....my eyes are blurry and there is something on my face, get this thing off my face....get it off, get it off, get it off. Phew.....you heard me mentally asking you to take this off my face, now go and get me a cheeseburger - GO!

Damn it, she's putting a white patch over my nostrils, these are really long stitches hanging from my nose, noooooooooo not the mask again - Pain button?? I have a pain button let me just press that now.....sleeeeeeeeep.

23/2/12: - Morphine fucks you up. Tablet form, not so much, just a slight chillin to help you relax of a night time to aid in sleep.....I.V form - IT FUCKS YOU UP. Every time I closed my eyes I was in an instant nightmare. I stopped the self-medicating morphine drip as soon as I became "aware". The two long stitches I thought I had were actually tampon style nose plugs stuck up my nose - not attractive, nor comfortable. Apparently they had taken so much bone away from my right nasal cavity that the blood was freely spilling. I am told that they actually managed to clear a window in there so I should be able to breathe through both nostrils (woohoo). 1.5cm thickness of bone was cleared away from my cheek bone and they took another mass of bone from the roof of my mouth. As such my speech is worse because of the swelling, but it will be interesting to see how my speech goes once I am healed.

I feel so out of it.....and Arwyn is looking at me differently. I don't like that. She looks at me like she knows she knows it is me yet she questions it at the same time showing her doubt.

Anyway....I doubt I will be able to write much more as all I want to do is lie down. So here is a photo diary for the first couple of days. And I may update this blog post with more as I heal.

Two hours out of surgery

The nose tampon strings I thought were stitches.

Looking almost normal Tuesday night around 7pm.

Tuesday morning, after nose padding removed.

2am- Wednesday morning, the swelling begins in earnest

I hate feeling like this. Hate it, hate it, hate it. And I really want to blow my nose, but I'm not allowed to. This sucks! SUCKS, SUCKS, SUCKS!!

Okay *sigh* Moan done. going to go to sleep.


Follow up appointments on Friday and Wednesday, will be able to get much more from the doctors since I will be coherent.




What is written below was to be a separate post to accompany the week that was... of Lily's surgery - that being said J.J and I lost days, apathy seems to have taken hold... so this is a draft of what was written at the time. It hasn't been edited and J.J didn't add much during the week but here it is...

MONDAY:

J.J.:  It's going to be a long day. I already knew that, just wasn't aware of how long it was going to be. We start off by dropping Arwyn off at Hero Corrina's who will take her to before school care for us. Then it's off to the PAH for Liv's check-in and my 'routine' oncology check-up. Well, I can already feel from what my body is doing that it isn't going to be routine.

My stress levels build. I'm anxious, twitchy, alert, but distracted all the same. I imagine this is what it felt like to be in a fox-hole waiting for the action to start.

We get Liv checked in and I wander off for the routine bloodtest. By the time I get back,  Ted is there - Liv has been checked in and now its just waiting time for her surgery my appointment.

Time for breakfast.

We finally get in to see the Doctor - he's actually the head of the entire oncology/heamotology dept. He gets things done, has a bedside manner  and remembers the details of your case. In a clinic that is this busy anyone of those characteristics is enough. I like him.

He greets me with a how are you? And follows it up with a "you never complain."

"Well, today I'm going to."

"Oh?"

I proceed to explain the new symptoms. The pain down the legs, across the back, the trouble with pissing.

Within 10 minutes I'ven been booked in for an MRI - normally a month long waiting list.

Down in radiology we find that its going to be a few hours before the MRI - I send Ted home, and tell him that he can pick me up after Arwyn from school. Lots of driving, but what can be done? Ideally, everything would have been done long before - but it just isn't going to be easy is it?

2pm - MRI done and now back at the oncology clinic waiting for the docs to come back and tell me what has gone wrong now. My thoughts are racing back and forth between the cancer and wanting to check in on Liv. I want to know that she is ok. I want to be in the room holding her hand as she wakes up. I want to be able to look after her the way she looks after me.

I ring Ted and let him know what's going on. I tell him to just come in and wait after he picks up Arwyn.

Damnit!

I dont think of it until 3:10 - the plans we made for Arwyn's hair to be done!

AAARRGGGHHH.

I don't have the phone number.

I finally get back in to the docs - its a registrar this time. She tells me where it has spread too, gives me a bunch of pain relief. The other Doctor had already made arrangements for emergency radiation treatment. They want me back on friday for more discussions.

Ok- it is a case of hurry up and wait, but it is happening very fast.

That doesn't actually bode well.

Around 4pm we are finished and head up off to Liv's room. The surgeons are with her, she's been worried about me. She looks great. Tired. Sore. But she is the beautiful bride I married nearly 10 years ago.

I'd do anything for her.

She's worried about me. She knows its spread, I tell her what I know.

It's time for home, dinner, bedtime rituals for Arwyn.

I'm fucking exhausted, I'm in pain, I'm stressed.

Time for sleep.

Lily: Being sliced and diced - BLACK OUT - Fuzzy.....SLEEP! Nasty morphine based dreams.....need to be "aware".

TUESDAY:

- J.J.: Ted and I get the little princess off to school, with the help of Corrina coming in  to do her hair for us. The rest of the day is spent running around doing little errands. A bit of retail therapy.

Lunch. A phone call or two to Liv - she sounds great.

I fall asleep on the lounge.

Lily: A little it more with it...spent the day watching seasons of " How I met your mother".

WEDNESDAY:

J.J: I wake up in a panic.

It's 8! Oh god, please let her be ready for school.

*Relief* The house is empty - Ted has taken the little one to school.

I make some breakfast, shower, ring Liv - she gets to come home today! We leave straight off to go and get her and get me in for radiation. I'm trying to figure out a map and schedule.

Thank god, Liv is waiting in the foyer. Wow, she really wants to be gone and home. After all the time I've spent at the PAH over the last year I can't blame her. I get dropped of at the Mater - lots of chatting with staff over me being back so soon. They tell me how long a day it will be.

The first planning part last about an hour - nothing to do now for the next three hours.

I head off to the sushi train.

Yum.

I go back inside and the nurses give me a bed in a dark alcove to have a nap.

Lunch and a nap.

Awesome!

I have a quick chat with the radiologist - side effects, how long etc.

Treatment - lay on table, don't move, all done.

Get picked up.

Home.

Home where we all are.

I dont want her to do anything, I love having her back.

Just getting to sit around the lounge with her is enough.

Lily: I'm home.

THURSDAY:

Lily: I honestly have no recollection of today.

FRIDAY:

Lily: Seriously, my face hurts.

SATURDAY:

Lily: The weight of the world is pressing down upon my shoulders. I have reality firmly shoved into every orifice and I'm panicking. The second guessing being done on decisions I am making on behalf of Arwyn and myself for when  J.J dies is sending me around the twist. I need support. I need someone to take care of me. My face feels like it has been ripped off and stitched back on - today is not the day to place doubts upon me. What do I do? Where do I go? Why are you bringing this up now?

I am crying so much and it is forcing my face to pull apart from the stitching. Oh my god there is so much pain. Pain, Pain... PAIN!

Week 4.25 of Radiation:

Week 4.25 of Radiation (the final week):

(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 three of Radiation".

Monday:

Lily: Oh my god! It's the last week. *sigh* Radiation is exhausting and I am not even the one having it. And everything about it is bittersweet since we know the cancer is no longer curable. The excitement of finishing the treatment is gone because instead of the hopeful " It's cured!", it may mean that J.J has had enough of treatment altogether and decide to let the cancer have it's way. And that's not being negative. It's just a cold hard truth that at some point in your life whether it is yourself or someone you love who is battling a terminal illness, the day will come in which they say " I'm done...I'm done with treatment!". It will freeze you to the floor, your heart in your throat, yet you swallow because you know; you see the road map of pain etched across his eyes, in his face, across his entire being and how could I ever ask him to endure it to spend a few more days with Arwyn and I.

That's a thought that goes through my head. I do not tell J.J (he may read it here obviously), for he already knows - I've already told him a few times since the diagnosis that if it ever got to a point in which he decides he has had enough...to just let go, and not worry about Arwyn and I, for we do not want him living in the horrendous pain that he is in.

Again, I want to reiterate that I'm not being negative, we're just facing that possibility - if not today, then perhaps next week or next month, it just depends.

I guess my thinking this morning is because of J.J's night last night. It wasn't good, it really wasn't good but he can tell you...

Set my alarm for 5:55am. Got dressed, moved the bike into the lounge room and started pedalling while watching the movie " The Fifth Element". I did half an hour on the bike, the hips start pulsating by the end and I swear I can feel things moving or popping in my hips. It's not painful, it just lets me know that I have started exercising to accompany the healthy eating. 

By 7am I have finished showering and woken Arwyn up for breakfast and a new week of school. She doesn't want to go and tells me that, " Mummy, tomorrow...tomorrow I think I'm going to have a headache, just so you know that I can't go to school tomorrow. Okay?"

Yes my darling, okay. 

 We arrive back home and my only little charge for the day is the cutest little boy. He and I set up some trains and cars for him to play with while J.J prepares for his Superbowl Monday. By lunchtime, the little one is fast asleep and I use the down time to catch up on several daycare projects.

J.J.: Yep, its true, Sunday nights sleep sucked. But, today is Superbowl Monday! Woohoo, wings, fried chicken, fried cheese, tequila and football. I don't particularly care for either team, but the Giants must lose because they knocked the Packers out.

The Giants didn't lose.

I'm feeling much better today.

We get to radiation on time only to find out the other machine is running an hour behind, which means we will be running behind. It is only fair after all, can't have someone wait and wait and then have us just walk straight in. If it was reversed I'd be grateful that I was being assisted.

The great thing about radiation tonight, even more so than this being the last dosage on the arm - is Arwyn.

I'm the centre of her attention. She's even climbed up and cuddled across my lap and arms. She hasn't done that in ages and it just feels so loving and good. I'm going to be having warm fuzzies for weeks because of this. They say laughter is the best medicine? Well, they obviously don't have loving little girl cuddles at hand.

Tuesday:

Lily: Up at 5:30am, 2nd day to get up early and do some exercise (alright who are you and what have you done with the real Lily? :) It's a full day today with three two-year olds who keep me busy busy busy yet I get some good footage of them for their parents and while they sleep get to finish some documentation for the EYLF (Early Years Learning Framework - a National Guideline for all Early Childhood education).

The day is routine yet by the time we have to go in for radiation, I am almost falling asleep at the wheel. I wind the window down, tell myself to wake-up ready to bitch slap myself and we make it to the oncology department without incident. While J.J is in for his treatments, two of the nurses stop by the waiting room and give Arwyn a red polka dot teddy bear which is named Daphne.... with the exception of Arnie and P.J (two bears Arwyn has had since birth), 99% of the remaining stuffed toys are named " Daphne" - from Scooby Doo (of course).

She's very excited by the gift and asks if she is allowed to sleep with it tonight once we get home.

With coke zero in hand, we drive back home missing a fizzer of a storm and settle in for the evening.

Wednesday:

Lily: The bone disease that I have is called "Polyostotic Fibrous Dysplasia" (PFD) - look it up for a clinical definition - my definition "spongy fucked up bones that causes easy fractures and deformity, especially in my face". Why did it have to be in the face? I don't fucking know, but it sucks.

We are up early to get Arwyn to before school care and drive to the same hospital where J.J is being treated. My appointment is at 8:50am, we're there at 8:30am and settle in for a wait. We plan to see a movie today since it's a day off from work for me and think we have time to do this before it will be time to pick up Arwyn. I started seeing these surgeons when the blurriness in my right eye was getting annoying. Blurriness possibly means that my PFD bone may be pressing on my optic nerve. This was roughly three years ago and surgery was put off at the time as we were beginning fertility treatments and my surgeons felt that the hormones in the fertility drugs were playing a part in keeping the PFD bone active, forcing it to continue growing. I say that that is erroneous as the bone was continuing to grow long before I begun any fertility treatment. Since we chose the fertility treatment over my bone disease, we went away and waited. A year later, we went back for review and since we were still deciding about fertility and J.J was just getting diagnosed with cancer, we again left any surgery for me in view that cancer came first and we still had a glimmer of hope of IVF.

Cut to present day: We all know what's happening with J.J and IVF is no longer on the table. No fertility drugs have been in my system for over eighteen months and the pain in my head/jaw is getting unbearable. I literally have to to pry my bottom teeth out of my upper right hand side gum as the upper jaw angle resembles the arrow angle below.

 ➘

The part that always kills me is that when I was 21, I had perfectly straight, healthy teeth. The only thing that was keeping them straight however were the porcelain braces I wore as my bone keeps growing unlike the average day person. 

So, with pain increasing, migraines increasing, the decision to have surgery now while J.J is still alive is made. If we wait until "after", that could be another year before anything is done. If we do it now however, at least Arwyn still has one parent to comfort her should anything go wrong.

At 10:10am, we finally get into see Dr Reid (Lead surgeon). Surgery is good to go. A week and half away! YES! Then he explains the bad news. He's removing three more teeth (these are the front ones). And yes, they are crooked, and yes probably a nerve thread away from dying but at least it gave the illusion that I had teeth. And now I have to loose them - and the possibility of getting false teeth is greatly reduced since Dr Reid has had no experience with a FD patient (the disease is rare) and using dentures in a diseased jaw. Fabulous. Fanfrickingfuckingtastic! So on top of loosing teeth, I wont even get replacements. Confidence plummeting - ugly high school girl returning to the psyche!

Tears.

Tears.

Tear -

stop crying!

I sign the waivers saying that if the hospital should kill me that they are no way at fault - blood loss possible, infection possible....I understand, I understand. Can we go? Yes....marvellous, I'll see you next week, I'll be the one laying down on the table, you can't miss me.

J.J and I are out the door and off to the movies in style - Gold Class cinemas, comfy lay back lounges, cheese platters, beer (for J.J), big bowl of popcorn and Sherlock Holmes #2. Wonderful!

We get home and I start the military operation to organising things for my stay in hospital as who will look after Arwyn while I am out of it? J.J can't....well he can, kinda... but she's 5, always on the move, always chattering, she'll have him roped and hog-tied in under five minutes and then she'll be on her own - the weight of the world on my shoulders just doubled. 
Thinking....always, always thinking.

J.J.: Today, is Lily's day. We go and wait and wait and wait for an appointment for her instead of me. The news is excellent, surgery! How often do you get to say that? It means a lot of quick planning on our part to get things in order on such short notice but better sooner than later. We head on off to Gold Class, popcorn, cheese platter with candied almonds that tasted awesome, Peroni's. Then lunch at Grill'd. It's been an awesome day.

Thursday:

Lily: Routine day until the afternoon.... panic attack ensues.... can't explain it.... hand shaking like anything, sore. Tired.

Played cloud watching on drive home - love this family moment. One cloud offered up multiple persona's.

J.J: It was a routine day. The dexamethasone is wrecking havoc with my sleep, never fully

asleep, never fully awake. Radiation is running late again, but nothing too bad. Only two more treatments to go. On the way home, the three of us partake in an awesome game of cloud watching. It's the little things that make life worth living.

On the way home we stop at a grocery store and I run into one of the officers from work. We chat quickly, I have to explain that I won't be coming back, not likely at least. As happy as I am to see him and anyone else from work, sometimes it pains me to be honest. I truly love everyone there, I love the camaraderie and fraternity. I only wish I could repay the same in kind.

Friday:

Lily: Two radiation treatments to go. Routine, routine, routine. Trying to work myself into military mode to organise.

Shit! -  Radiation for tonight got cancelled due to power failure.....radiation will now be extended to include Monday and Tuesday. Bugger!

J.J.: Well, it was a busy afternoon, when we got back, the phone rang from the radiation clinic telling us that there had been a power failure and they were trying to get it back on. An hour later and they ring back to say that they still can't get the power up and running. We went out to get Indian take-away, which sadly turned out to be very disappointing. I normally give a place more than one chance, but not this time.



Saturday:
Lily:
Swimming for Arwyn
Dancing for Arwyn
Marathon cooking session to get Arwyn's meals cooked for when my Dad is up to help us out after my surgery. Really trying to make things as easy as possible. My right eye starts to blur, a headache is forming at the base of my skull... I'm seeing white spots and have this genuine unwell feeling. What the fuck is going on with me? I tell J.J he has to put her to bed as I can barely managed to stay standing up. I shower and then collapse on the lounge....the lights are too bright, need darkness.
Sleep I'm coming.


Sunday:


Lily: Business paper work done. Headache  and right eye again blurry. Cutting this short and will continue this week to include Monday and Tuesdays of this coming week as radiation is finished on Tuesday.


Monday:


Lily: Oh my god, what a morning, and it's not even 10:46am. Two new clients have started this morning, with only receiving notice for one of them at 7:15am  - Busy busy busy. The children's roster is almost full again and while loving it, it just means I'm flat out until the kids are either sitting down to eat (such as this moment) or sleeping (which will be in an hour and half's time). I think I missed breakfast - not good. I've been trying not to skip a meal in view that it stuffs up the eating healthy section of my day. 
Hopefully today will be just as routine with radiation tonight.


8:58pm - The day was long - that is all.


J.J.: It was meant to be the last day of Radiation treatment, I'm secretly hoping that they are going to tell me not to come in the next night, that one more or less really isn't going to make a difference. I really start to wish this was the case when they tell me I will be the last patient tomorrow at 8:30pm.
Crap. Can't keep Arwyn awake that late on a school night - it would be close to 10pm before we got her into bed. We make arrangements for personal hero Corrina to take me in again.
Corrina you rock.




Tuesday:


THE LAST DAY OF RADIATION!!!


Lily: Blah - That is all.


Oh... almost forgot, thanks to Corrina who is driving J.J in for his last radiation treatment at 8:30 tonight. You're an angel dear - mwah! xx P.S. Apologies for the creepy man standing out the front of our house on the other side of the fence, I swear we are not affiliated with him in any way shape or form - and if it helps, I wont be able to sleep tonight knowing the boogey man is out there.


J.J arrives home around 9:30pm, by 11:00pm we are in bed together and that's when another conversation about death and dying take place. I'm brought to tears again and cannot sleep. I turn the TV on, and I surf the channels watching an episode of MASH and the ending of the movie Dead Calm. J.J and I hold hands - he's awake and I suspect due to the dex that he'll have an AWAKE night.... he excuses himself to use the bathroom, I turn over and try to sleep.


J.J.: There was much levity on the trip to and from radiation - thanks Corrina. The radiation itself is routine, the staff all chatty and fare-thee-well wishing. The typical jokes of "I do hope I don't have to see you again..." Ha HA ha - yes truly original.

I get home and I'm tired. Liv and I do have a rare death and dying conversation. But, sometimes they need to come out. It was a lousy night, the dex did keep me awake, its a mania. It's like being on speed - in fact it is speed. So, I wind up lying in bed, reading - reading the wrong book at this point in time. Fyodor Dostoyevsky's Notes from the Underground. It's a first person stream on consciousness narrative. I can't help myself - my brain starts to rattle off in the same fashion, remembering or at least juxtaposing elements and events from the hungry years into the same story line. I compose long, rambling emails to friends, long blog posts, anything I can think of. But, I can't be bothered to get out of bed, go to the lounge and fire up the notebook. Three hours later, the flow and coherence of what I wanted to say is gone. Nothing that I thought sounded profound at the time of the mania is left.
Probably for the best. I actually wrote a passage using halcyon in context. No one should have to suffer like that at my hands.
The good news is tomorrow should be a crash day. The dex has kept me up for close to 60 hours now, so I should sleep for 5 hours and let the brain relax to mush.