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.