The week that was chemo (ROUND 2 - of the current treatment)

(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 "Oh the Places we have lived".




So the week that was...


MONDAY:
J.J: We made our second trip in a week out to Dreamworld (amusement park) and White Water World, Arywn may wind up thinking that this is normal, and we can't have that now can we? This time was a little different, we'd prepared for our day, planning everything out before hand. We'd even rented a cabana for the day, which is brilliant, I'd recommend doing it to everyone, but as I want to have one whenever I go, I won't recommend it to anyone... However, if you do chose to get it, there is a table, two reclining lounges, a two seater sofa, ipod dock stereo (in our case it didn't work), safe and fridge with six complimentary beverages. You can order food from the cafe and they deliver it to you. It's the perfect place to kick back and relax during your day. Which, is really what you are there to do isn't it. Plus, while the kiddies are running around in the water park, you can kick back with the kindle and just enjoy the very noisy serenity. I don't think I'll ever go without getting a cabana again.

Well, having just spent the day at the park a week before, I wasn't overly eager to race through the rides. I can graph it out now that the older you get the more my desire to be on the thrill rides decreases. So, I wanted to go on a few I missed out on the previous trip and once they were done, I was content to kick back for the day. I started off with the Green Room, it doesn't look terribly intimidating, but looks are deceiving. I went on it with Kylie, Stu and Joel, as Arwyn was too small and went on a different one with Lily, planning on a tag team attack. Several times during the ride, I thought I was going to lift and fall out of the inner tube and plummet, not too my death, but a "Oh, Shit! this is going to hurt" fall. Fortunately, we didn't... good ol' gravity keeping us all in place. Although, young Joel, who is all of nine, didn't seem to enjoy the thrill of potential demise quite as much and his screams were more of the sheer terror variety than excitement and thrill. And they continued for a few moments even after we were safely standing on the bitumen. Clearly, the young fella hasn't found his thrill point yet.

Arwyn on the other hand, well, she's an adrenalin junkie. Ride after ride, she screams with excitement, usually yelling faster! Faster! Her disappointment is palpable when she is too short for certain rides, but I suspect at the rate she is growing, she'll be able to go on just about every ride by the time she hits her sixth birthday. Which leaves me to wonder what she'll be doing for fun at sixteen, eighteen and twenty-one. Presumably, she'll have already tried skydiving, base jumping and bungee jumping all before then.

Monday wound down, and came to a quiet finish with pizza and dinner at home with good friends, I sadly crashed out early and I do regret not being able to stay up and enjoy a visit and amiable conversation. But, the fatigue just got the better of me.


Lily: Dreamworld and Whitewater world the 2nd trip. J.J pretty much said it all. Though while he, Kylie, Stu & Joel got to go on the Green room, Arwyn and I had barely moved for the Hydro-coaster ride due to ride failure. Highly recommend the cabanas and like J.J will also never go again unless one is booked.
Oh and this time I remembered to hold onto my daughter going down the slide instead of letting her fall through the tube which made my heart beat a little faster with worry that she was going to drown mid-slide the first time we went to the water slide park.


Tuesday:
J.J. Woke up, dragged the clippers cross my head, had a cup and then Lily drove me to the hospital to start the next round of chemo. This time was different, my love was actually going to stay with me for a visit. How awesome! After waiting for two hours, we got word that my bed was ready and I was stoked that it was the best bed in the ward!
CRAP! The "annoying, depressing, everyone has to be as miserable as I am, why aren't I the centre of attention, I want to bash his head in and put him out of MY misery wanker" is still in the room.
This is going to be a rough few days.
Lily and I sat and chatted and loved during the few hours she could spend with me.
The evening brought more excitement as we tried using face book video chat to read Arwyn a bedtime story. She was stoked! Which in turn meant I was stoked.


Lily: I seem to be drawing a blank. The head is tired, the brain is non-existent, I'm going to go with what J.J said I did, only because it sounds like something we did and not something completely out of character like get naked in the middle of the hospital singing at the top of our lungs " I AM THE LIZARD QUEEN." Though that probably has been contemplated from time to time I suspect.


Wednesday

Not much else to say, but the fatigue really caught up with me and I crashed and burned at seven p.m. next thing I know it's eight a.m.
Guess I needed some sleep.


Lily: There was a Wednesday in this week?


Thursday:


Lily: Pretty much worked the entire day, couldn't say thank you enough to our friends Kylie and Stu who did above and beyond yard work in both the front and backyards. And missed them the moment they left. In the evening, Arwyn and I brought out reheatable meals and together as a family we sat at J.J's bedside and ate our dinner together. I think this will be one of those memories that will stick for me. 
Another night of non sleep however. My brain thinks too much. Trying to organise things. Trying to work out a way to get $1200.00 of owed childcare fees from a parent who refuses to return my calls. I've done the work, just pay me - complete and utter utter cow.


J.J: Well, its back to the same old routine. A lousy night of sleep from nurses that need lessons in stealth. Being woken up to early for blood tests etc. Breakfast, sit around and wait for doctors to come around and tell me I'm a great patient - which really means, I don't ask uncomfortable questions that they can't answer, because despite all of their degrees I'm really only a file number and the top page of the folder that they happened to read.
But, I digress.
Today was special as Liv and Arwyn joined me for dinner. I opted for what was brought instead of the hospital fare. We got to read a story.
All is good in the universe.
Good night.


Friday:

Lily: Well today is officially day one for me with eating healthy having started ordering from "Lite N Easy". I am completely happy that I do not have to go without bread, as bread to me is breathing. It's all about portion control and apparently I need help with that, so these guys can do that for me until I am at a point where I can take over and do it myself. So fingers crossed the weight will come off as I'm tired of being pushed back into the ocean every time I sun bake on the beach by Greenpeace. 


J.J.: Really, I cant stand this idiot diagonally across from me. However, its amazing how effective a 'fuck off, I didn't ask you to come sit next to me and chat' is. Fortunately, no one else was in the room at the time, but it makes me wonder if they would have been appalled by the bluntness or would they have appreciated the honesty. Seriously, I've always known every ones time line is finite and so I've always happily spoken my mind, whatever  the consequences may be. Except, with this one there can be no consequences. Happiness ensues  for the rest of the day.


Saturday:
Lily: Oh my fucking god, I feel fucking wrecked. Everything hurts, my face especially. It's 10:36am, have to go and get ready to visit with J.J. I'm yearning for a coke right now. My jaw hurts, my back hurts - everything hurts. Yet nothing in comparison to what J.J is going through. Suck it up princess, suck it up.

J.J. It's Saturday, the chemo is kicking my arse today. Not sickness, just fatigue and malaise. Lily and Arwyn visiting is a bright spot, but after they go all I want to do is roll over sleep and be in solitude. I really don't need someone asking me how I am every half hour. Just hurry up and let me out of here.



Sunday:

Lily: Picked up J.J at 10 this morning. He's tired and I hate to drag him to the grocery store but we need supplies. With the new way of eating for me, I've cooked in bulk for Arwyn and froze the meals, that way I know that even if I am beyond wrecked, she'll still have a healthy meal and I wont feel like such a bad mum. I would cook for J.J as well, but damn his chef status and the lack of my own culinary skills because nothing I make is up to his standards. Not to say that he throws a tantrum or anything if I cook spaghetti bolognese; on any normal non cancer day he would eat it just as I would his stir-fry's (I'm not big on stir-fry's - usually too much chewing involved for my teeth with all the vegetables, Bok Choi etc). It's just that it is not his favourite meal and would prefer something different which is fair enough. 
Last night he chose pizza as his " get out of hospital" meal - I only think he ate 2 slices ( almost unheard of pre-cancer), - I don't think a day goes by that I do not worry about him. Watching for signs of decline, ascertaining whether or not it's the start of it or whether it is simply just " not hungry".

The constant worrying keeps for my late nights. I'm getting tired.

J.J. - It's Sunday, going home day.
"You're going home today?" From the whinging idiot.
"Yep." Me, in neutral tone - Yes, I am capable of not sounding angry.
"Oh, there's nothing like getting to go home and sleep in your own bed." From the nurse.
"God, yes. It will be awesome to be at home, t.v. big bed, loved ones, etc." - Me.
"I haven't been home in more than six weeks. Been stuck here." From the idiot.


The room is full, Liv and Arwyn are here, I'm too tired to care, so I bite my tongue and hold back on reminding him that he has CHOSEN to be there for six weeks and is free to go at any moment. In fact if it wasn't for whinging, he would have been tossed out the door.
I digress again.
I trundle off with my two rockstars.
God I love the two of them so much.
I worry about Arwyn growing up.
I worry about Liv being alone.
But, I know that they'll get through the future together.
They are awesome.