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.

Week 3 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 two of Radiation".

Monday:

Lily: Went to bed last night with a pounding headache, yet woke up and it was gone - Oh joyous day and hallelujah! There is nothing better than waking up pain free. I get Arwyn sorted for school and this will be the beginning of a full school week for her. I seem to have worked out what time I need to get her up by to make sure we leave on time to get a car park and walk to her classrooms.

J.J is woken up by the Termite guy who is here bright and early to start laying the barrier of Termidor around the house.

I am the essence of hospitality, I always have been and I always will be. I will always offer someone a drink when they arrive at my door, clean sheets and towelling should you stay the night, a meal or three depending on how long you stay and even control of the TV when we have not got something planned to watch. Yet due to my misfortune of being so easily manipulated into believing that people will always do the right thing, I am so paranoid when I get people in to do things to the house. A running monologue goes through my head every single time " Will they fuck us over?" - I hate thinking like this, I hate that I am becoming bitter (again), I hate that the trust is gone. And the Termidor fellow is a nice enough old man, but it's the old lovable workman who have a story for every situation that you have to be wary of....actually that should be " but it's every single person on the planet that you have to be wary of" *eyes dart from left to right*...

Paranoia over, the workman has done his job, I have paid the full price in cash and he even gives me $100.00 back as I over-pay him, bitterness eases off (for the moment).

Radiation uneventful... same beams into the head, same daughter ruling the waiting room, same magazines trying to get read uninterrupted, same candy machines talking to me - I question my sanity at times good folk.... I question my sanity.

J.J.: You know what? My memory is gone. I couldn't for the life of me remember what happened Monday. I'd like to make an addendum to Lily's comment on hospitality - when someone accepts an offer for a tea or coffee, its me that gets to make it as Lily doesn't drink either and doubts her skill to make a good cuppa. The radiation is getting faster, or the team delivering it to me is getting more efficient.

Tuesday:

Lily: I'm typing this up on Wednesday and I have no fucking clue what happened on Tuesday...so for your amusement or just to fill a gap, I have stolen what friends on my face book did (or said they did) on this day today Tuesday and inserted my own name. :)

"Once upon a time, Lily dropped the kids off at school and then laid down like Nanna and had a real nice nap. After pouring my 2nd Jimmy "mmmmm", I went and had a facial before starting to get quotes for some renovations for the baby. It was then that I woke up as I realised I had a weirdo-free train ride.....strange that."!

J.J.: We begged and pleaded and asked oh so nicely to make some changes to our appointment time the next day so we didn't have to make two trips into the city. No promises were made, but we were told they would do what they could. On a related note, the death mask is actually fitting comfortably three days in a row now.

Wednesday:


Lily: 
Took today off of work as I need to go and have an internal scan done of my ovaries.


Originally this scan was planned when the idea of IVF was still very much alive in our hearts - before the cancer we had been trying for a second child almost since just after Arwyn was born and after three years of "secondary infertility" it was appearing as though IVF was our only option. Then the cancer happened. We were going to go ahead anyhow, one life to live etc, enjoy life while we had it when we had it, the cancer could be cured - and then it spread ... we questioned our right to have a child knowing it had a 50 / 50 chance of having the same disease that gave J.J his cancer. With Arwyn, we never knew, it was out of our hands - but this time... this time could we knowingly bring a child into the world knowing that it's chances were increased than the average person.
We debated together, looked at all the possibilities, the what if scenario's and pros and con's list. Were we any different from a family where breast cancer runs down the woman's line or dementia passing from parent to child. I mean it was a 50 % chance either way... and so for one last time we decided to go ahead with IVF , we hit the mother of all BRICK WALLS - we were told "terminal". We were both destroyed. (J.J.: Destroyed about not being able to have another child. Although, we weren't particularly happy about being told terminal either.) Despite how perfect we know Arwyn to be, neither of us could knowingly bring another life into this world to suffer the way J.J is suffering.

Back to the scan, I had scarring from the aftermath of Arwyn's C-section. I had lots of cysts (suspect), there was also talk of ovarian cancer where the doctor wanted to make sure it wasn't, the reason for my scan today.
Cancer feels like it has been in my life in one way or another since I was 21. On three separate occasions I have been told I have cancer as my bone disease looks similar to cancer in scans. This will often then involve bone scrapings being performed to ascertain if it is or isn't. I'm tired of the doctors mistaking my bone disease for cancer, every time it sends me into a panic and I have days or weeks of worry. 
With this time, I'm relieved yet I kind of expected that it wouldn't be cancer and I wonder if this current complacency will do me in at a later date should I ignore signs simply because I am use to the pain in my body.
I'm completely bummed about the no more children as well...and I know to you as the reader this might be selfish and out of place with what J.J is experiencing yet we are losing so much with "terminal", we're loosing our lives together and everything that that entailed and I'm devastated. 
Shoulders getting heavy.


Back to our actual day off together.
It really was lovely. 
Ever since "Le Classic" closed on Cavendish Rd, I have been yearning for some French cuisine and there, like a little shiny beacon "French Martini" called to us along the Southbank restaurant strip, and it was mouth-watering goodness. We both left feeling warm and content and the day was a good day.


J.J.: 
Woke up and dropped Arwyn off at school, then a trip into the city with the sun shining, smiles on our faces and lightness in our hearts. We did get in for radiation early, just. Had we been 5 minutes later it would have been a no go. So, a still good start to the day. We head on off to Lily's appointment which is at Southbank Parklands, I take my flip-flops off and enjoy the feel of a well kept lawn under my feet. I'm impressed with the doctors office. The view of the parklands is fantastic, the chairs are really, really, comfortable and I'm offered a cup of coffee - which in all honesty is one of the ten best I've had in this country.
I feel very relaxed.
Lily comes out with the excellent news that it's not cancer. WOOHOO!
Now, what to do with the rest of the day? Hmmmm, lots of great eateries around, 3 hours to kill. I just can't think of what to do.
We decide to eat.
First place, I've heard great things about, but $20 for an entree and $30+ for mains just seemed a bit much for lunch.
Next place - ooohh it's new.
More importantly, its French and the aromas - garlic and pesto from the kitchen are well... salivating.
We settle in, next to each other, a cool breeze, great service. No chattering little one.
My relaxation increases.
A vespa martini.
More relaxed.
Lunch arrives steak tartar - (average to be honest)
Baked Camembert - decadently awesome.
Duck Confit with roasted potatoes, and roast veggies - carrot, capsicum, pumpkin and aubergine. All of it coated in the fat drippings from the duck. *drool*
We are still a little hungry, or overwhelmed with gluttony  and order skewered scallops with bacon.
It was just, just, awesome. I already want to go back.
We go home and its time for a nap.  Lily, lovingly leaves me to sleep while she goes and picks up the munchkin. All in all it was a fantastic day, almost like being on vacation.


Thursday:


Lily: I really have to start typing what we did on the day it happened because here I sit on Friday and for the life of me I cannot tell you specifics.


Took Arwyn to school, worked during the day, picked up Arwyn from school, went to radiation, came home, ate dinner, watched some TV, went to bed; did not sleep well (move to Friday).....

J.J.: I was originally going to have to take the community transport into but it meant getting to the appointment 4 hours before hand. There is no way I am going to waste that amount of time sitting around waiting for a 2 minute assessment and then wait another hour for treatment. So, we show up right on time for the radiation treatment, the Doctor rushed me in and all was right in the world. Doctor Pullar, subjectively, felt that the tumour on the side of the head had indeed shrunk, but we won't know until another scan is done.

Friday:


Lily: Really, really, did not sleep well. Was awake at 5am and it always hurts to be up an hour and a half before your alarm is due to go off. Got Little Miss ready for school and I love watching her roll out of bed half-asleep. I have that heavy head lack of sleep feeling and I dislike it. J.J rolls out of bed around 4 hours later and his head tumour is looking very red. Again, the day is routinely completed with the one exception, J.J and I hang Arwyn's first school painting in a frame above our bed which makes Arwyn over-joyed and proud of herself for her accomplishment.

My Garden by Arwyn aged 5.

By the afternoon, routine is packed full of getting in and out of the car.
Picked up Arwyn from school, came home, got her ready for ballet, got back into the car (with 3 children who all need to be in child safety seats), dropped Arwyn off at Ballet, came home waited half and hour for one of my daycare kids to be picked up then got back in the car to drop off the last child then went back to pick up Arwyn from ballet, to then go and pick up J.J to take him to radiation.
By the time we get home, my head is swimming.

J.J.; Just as the Doctor predicated my arm and head are starting to get red and tender. I'm also slightly annoyed that I have to go around with these directional marks put on me by a Sharpie every night by the radiation team. I wash them off,  they put them right back on. It's a different team tonight, they don't get the mask right, take too long  - which increases claustrophobia, and aren't particularly gentle.

Saturday:

Lily: I decide not to take Arwyn for her 8am swim lesson as she has the makings of a cold brewing and having to go under the water of a heated pool will just add more germs to a snotty cold. I ask her if she is well enough or if she wants to do dancing today and she replies " No, not today, I don't want my friends at dancing to get sick either". I make her breakfast, throw the TV on and crawl back into bed, my head swimming in snot itself. At some point she comes into our bedroom declaring she doesn't want to be alone in the lounge room so I tell her she can lay down next to me. This invites shenanigans from Little Miss and she begins tickling, wrestling, giggling on top of us. J.J is finally moved to get up, taking Arwyn with him yet I hang onto my pillow with cat-like claws and try to go back to sleep. I get at least another hour in bed before I zombie my way out into the living area. I sit in front of the computer and J.J tells me he has something to show me on Youtube. 
Description: It's called "Flash Fans: 2012 Budweiser Official Big Game Commercial". It's a Budweiser commercial in which two hockey teams from Port Credit, Ontario are told that a documentary is being shot about recreational hockey; so for the Australian readers, the equivalent of watching your son, husband, brother, boyfriend etc on the weekend in a community cricket /rugby league game - the only people in attendance to watch is usually family or friends.

I do not know why, but I burst into tears at the end of watching it just because I think wow, these guys got to feel that positive energy that only the big league guys would ever get to experience. Ohhhhh boy, going to be an emotional day. I blubber to J.J that I'm not going to mow the lawn today despite the first sunny day in which mowing is ideal, especially after a week and a half of uninterrupted rain. Arwyn hugs me and I'm putting the outburst of emotion to feeling sick and tired and still in the throes of waking up.

I suck it up, get dressed and declare I'm going to go and mow the lawn as well as hang out the laundry. J.J questions me, saying that before I had already said I wasn't going to do it as it would give me a headache; yet I reply that if I do not do it now while I have the chance too, the yard will get beyond the point of no return. He's about to question me further, and says he'll share the mowing, but I cut him off and tell him to rest like his doctor told him to do.

THE YARD:

I managed to get 90% of it finished until the mower decided to stop working. The headache is instant - I don't get it, fucking hate mowing.It's about 1:30pm before the yard is finished, all the clothes are washed and hanging on the line and I am showered and changed into some new clothes. J.J is hanging out for a Doner Kebab, so we head out to get him some lunch. I deviate from the healthy eating for one shiny brief moment and indulge in junk. No guilt, I think I'm too tired for it. We buy some groceries and then head home, I cook up some meals to freeze for the week for Arwyn and it's not until 4pm that I finally get to strip off, lay on the bed and just chill out watching "Glee" episodes while Arwyn plays in her room.

J.J.: I loved Arwyn's shenanigans as she woke us both up this morning. Lily begins to talk about a dream of dancing and food from street vendors when you leave a night club. I now have an overwhelming desire for a doner kebab (Shawrma, for our North American readers), it's wrong to be thinking about that at 9am. I take her out to the lounge room to give Lily more time in bed.
Lily comes out around 90 minutes later and I show her the above commercial. (Thank you cousin Richard.) She bursts into tears. Uh-oh, its going to be a rocky day. I do what I can to console and comfort, but sometimes I wonder if I'm making it worse when I hug and kiss at moments like this.
The day plods on and finally some seven hours later - I get my doner.
Yum.
The day continues on and I get a dreadful nights sleep.

Sunday:


Lily: Using the day to catch up on the blog entry for the week. Will also just lay around and chill out. Heading into week 4 of radiation... what's next?

J.J.: I'm mentally preparing for the Superbowl. Got to make sure I have all the essentials - chicken wings, deep fried cheese, alcohol, chips. Hmmm, going to have to make a run out later on.