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.

Week 2 of Radiation:

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

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


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


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


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


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


MONDAY:


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


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


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



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


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


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



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


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

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

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

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

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


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


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


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


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


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


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

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

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

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


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

SATURDAY:


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


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



SUNDAY:


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


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

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