Christmas Eve & Christmas Day:

Christmas Eve Day:

6:30am: (Lily) The alarm goes off and WOW, the tiredness is already over-whelming. The desire to beat the crowds at the grocery store and avoid the carnage, the tears, the blood, over-powers the tiredness and I press on. I wake Arwyn up, put Scooby-Doo on the TV and get her breakfast. While the toast cooks, I move down the hallway, trip on one cat before the other races to get in front of me and waits at the bedroom door, ready to pounce upon uncharted territory since we keep the bedrooms off limits to the felines.
"J.J, wake up!" leaving the door open to allow the cats to jump on him to aid in waking him up. I move across the hallway to Arwyn's room and let her know that Scooby-Doo is on. Oh, she looks tired, she didn't go to bed until late last night, yet she too carries herself out of bed and settles in the lounge room.

7:05am: We make it to the grocery store and get what we want with relative ease within an hour. A mutual agreement is made between the three of us to have breakfast at The Coffee Club (the only place open at the same time as the grocery store). J.J chooses the big breakfast, I choose eggs benedict with the healthy topping option of mushrooms and spinach and Arwyn opts to have the children's pancakes which upon arrival have little Christmas trees cut out and place on top. J.J isn't looking the best today and has starting to use his walking cane to aid him getting around. He's in pain; he's in pain and I can do nothing. I moan a little about how sore my thigh muscles are, from what I couldn't say, but every step I take ....aches. I look at J.J and berate myself internally for complaining about pain - mine is nothing next to his.
That's it, we are done, Christmas presents wrapped, food and beverage stock plentiful, fuel in car tank - WE ARE READY FOR CHRISTMAS!
10:27am: J.J is exhausted. Just going out for two hours has really done him in. His temperature is up, not near the 38 degrees Celsius, which in patients under-going chemotherapy means hospitalisation, but he is near enough. He takes a couple of paracetamol and lies down under the fan. Arwyn is a little cranky herself. I know it's from her late night and early morning so I try and make her comfortable in the lounge room as I prepare to go out and tackle another section of the yard. I hate yard work... and if I didn't have a home based business in childcare in which the yard must stay respectable, I would just let nature over-take the fucking thing.

11:42am: Sitting in front of the computer in nothing but my shorts and bra. It's hot. It's so fucking hot. And I'm paranoid. An hour and fifteen minutes doing yard work and all my brain can do is wonder how many ticks I have on me. To date in the five years we have lived here I have only ever had one tick; in my book, ones enough.  I've trimmed, I've pruned, I've yanked, I've raked. My legs have scratches up and down and I'm probably only half complete on the yard work. I begged the Heavens to rain down upon me for some relief yet she pretty much spat on me once with a "fuck you too!"

Our next door neighbour is a 75+ man. He lost his wife to cancer about a year before we moved in. He now too has cancer and J.J and him are playing tag team as to who is in hospital and who is at home. Poor bugger also popped his hernia out over the weekend just past but according to his daughter, J.J is still worse off then her dad. I rip out another weed and realise that the pain in my thighs is from doing exactly that.

For the first time in my drinking career which begun at the legal age of 18, I am having a drink before noon. Prior to that, I always said having a drink before 5pm made you an alcoholic. I wonder what you are when you have one before noon? HAPPY? and rewarded for doing stuff in the yard.

J.J's still asleep. I check on him, to see if he is breathing. Silly I know because he is no where near that stage (I hope) in his finale yet it reminds me of going into Arwyn's room when she was a baby just to make sure she was breathing. Hell, I still do that sometimes when she is completely still in bed and her breathing is barely a whisper of breath.
12:15pm: J.J clutching a pillow arises from the bed room. I ask how he is feeling and he barely responds with the exception of a slight nod tilt and raise of eyebrow. I'll take that response as a deafening "no".
I think I will go and have my shower and see how many ticks go burrowing into my flesh.

22:04:
The day has pretty much gone by, a few moments of depression, moments of sheer excitement from Arwyn who is so excited that Santa is coming this evening. All day she was asking about who was on the naughty list and was she on the nice list. Feeling very tired right now however watching "Love Actually", J.J's spirits seem to be a little bit better.

23:50: J.J and I put the presents out and I have all the stealth power of a grand piano dropping from a great height. J.J was on Arwyn watch to make sure she stayed asleep. Bedtime!


CHRISTMAS DAY.
Merry Christmas everyone - thank you for all the well wishes, phone calls, thoughts and notes. We wish everyone good health with a lovely day spent with friends and family. xxx
6:35am: (Lily) Arwyn comes into our room which means I lost the bet as I had the time slot between 6:50am - 7:20am picked out for her wake up time. She's one very excited girl who is bouncing around the house. J.J takes a pillow and settles on the floor near the tree and myself. During this time we receive phone calls from my brother, my sister and father and then later in the day, J.J's parents. J.J wanted to make breakfast but felt too ill to do so, so pancakes were made for Arwyn and then Eggs and Bacon for J.J and I.
9:35am I am cleaning the laundry, toilet and bathroom while Arwyn is busy with her toys. J.J has settled to lying on the lounge and I feel like the house is never going to be clean. I know I have people saying don't clean, let the house go... but honestly I can't do that, especially when hygiene is important around a loved one having chemotherapy. It has to be done and with so few days off, better I do it now then to leave it. Laundry also put on and hung out.

11:30am I finally get to sit down and settle in to watch a "Muppet Christmas Carol". Muppets are huge for me - I love the humour.... classic Muppets, not Muppets Tonight or this year's movie Muppets. I just wish Arwyn would get more into them.

12:30pm: J.J has made lunch. He wasn't up for cooking the Roast Duck he had planned so instead we just did a quick pasta with bacon, mushrooms, capsicum and garlic. Yum!

13:30: J.J has gone to the bedroom for a nap and Arwyn is busily playing with her toys. She has asked me to paint her nails and put some lip gloss on her lips (stocking fillers) and so that is where I happily go off to now.

16:00: (Lily) We arrive at my aunt and uncle's house for Christmas Day Afternoon. I'd like to take this moment and write about my relatives.

As a child, I didn't have many relatives that lived close by. An hour and a half down the old Sydney highway to my Nan's house (my dad's side of the family) aunt, uncle and cousins and then the monstrous drive up north to Brisbane to my Gran & Pop (mum's side), and aunts and uncles. Because of distance, we rarely saw either. Life happens, I get that now, but I always wanted to be apart of those families where the cousins grew up together and there was a family get together every other week. I wanted that closeness that some of my friends had. As such, when it did come time to visit relatives - I loved it!  When we went to my Nan's house in Botany, I use to love sitting in the lounge room or at the kitchen table and eat the meals that my uncle cooked. Lots of Roasts in the memory but even simple spaghetti bolognese  is still a memory etched upon my mind. It was also where my older cousin and my sister and brother would often run away from me, and not let me join in on their games (the down fall of any youngest sibling). To this day, I still remember being locked in the old style phone booths that have the folding glass door by the three of them. They ran around and around the booth singing a taunting song about my name, laughing the entire time. All I remember is crying a tsunami worth of tears and running back to my Nan's house.

It was different up north. My mum was the only one at that stage to have any children and so being the youngest and of course the cutest, I was in my element with uncles and aunts (U's & A's) who were only just getting together at that point. My sister didn't have anyone to hang around with which usually meant it was her and I against our brother (if a fight ever arose). My U's & A's were so much fun. Now they may remember things differently but this is what I remember. My U's & A's were younger than my parents - they were always given the title "cool". As children we would often sneak into their rooms early morning to wake them up which would always result in tickle fights and at night I would harass them into reading me story after story just to get them to stay that little bit longer with me.

Now I don't know who is reading this in the family, however if you are an aunt or uncle and you realise I am not speaking about you I mean no disrespect it's just that I have had different relationships with each of you growing up and as an adult.

For me, I have two couples that I loved and still love just being around them and their families. They are always welcoming, they make you feel relaxed and comfortable the minute you walk in their doors. I mean there are times I feel uncomfortable in my own sibling's presence in comparison to the welcome that you are given and it's not just from my U's & A's it's from their own extended families who have no ties to me at all. And I love it! I love every minute of it and use to wish and sometimes still do wish that they would adopt me.  :)

Today Arwyn, J.J and I were invited to their house with the other couple I love being around. Upon arrival I am greeted by my aunt's brother who gives me the nicest, longest hug I have had. And a lot can be said about a hug. This hug said that " I know your in pain, I know you are having a difficult time, but if you need it, say the word and I'll help in anyway that I can". It sounds ludicrous that so much can be said from a hug, but I'm not lying, this is just the way this family makes you feel. And then my aunt's brother actually said ' How are you doing? If you need anything, just let me know." In the entire course of the afternoon /evening, each one of my aunt's siblings and mother each gave me a hug that lasted the longest of times, and again each one was saying to me " I know your in pain, I know you are having a difficult time, but if you need it, say the word and I'll help in anyway that I can" and then they would actually say " If you need anything, just let me know". And I can't believe I have tears coming down my face while typing this. Being made to feel apart of something, apart of a family just has that affect I guess.... being an emotional crazy woman probably helps as well.

I love my aunts and I love my uncles. They have welcomed J.J without hesitation and are completely concerned and sincere with what is happening to him. They constantly ring for updates and to see how he is. They visit him in hospital when they can and treat Arwyn as though she were a grandchild and not just a great niece. So I just want to take this moment to say thank you, thank you for being there in whatever capacity you can be and thank you for a lovely Christmas for Arwyn, J.J and myself. We do appreciate everything that the four of you do.
22:30: Arrive home, J.J ready to pass out, Arwyn still bouncing off the walls. Wish I could go to bed, but need Arwyn asleep. Hoping everyone had a Merry Christmas.

xxxxxxx

J.J,:
I wasn't sure how I would be this Christmas. As I wrote in Remembrance of things past, Christmas is my favourite time of the year and as this is possibly my last, I knew it was going to be a rollercoaster of a ride.  Christmas Eve began far too early, I had just started sleeping well again, or I should I say I have started sleeping again. And it seemed like I had just closed my eyes when Lily was waking me up to tackle the day. My love is right, it was a rough day. I was tired, my back, legs, belly hurt. I felt like I'd gone a  round with the champ.

Plus I was feeling - well, it ranged from depressed, angry, delicate, numb and indifferent all in a one second loop.

We got the shopping done in record time, although I was in such a fog from the pain killers and sleeping tablets, I hardly recall any of it. But, with Lily's energy and planning we were finished in record time. So quickly in fact that we had an hour to kill until the bottle shop opened, which meant it was time for breakfast. Yum.

Time for home and a nap. The nap does make me feel better and we potter around the house. As each minute ticks by Arwyn's excitement becomes more and more palpable. Question after question about Santa abounds.
"How does Santa get in our house when we don't have a chimney?"
"Will Rudolph play with the kitties?"
"What drink should we give Rudolph?"
"Can I sleep in the room with the Christmas tree?"
"When Santa comes, can you get a picture with him and Rudolph?"
"Can you wake me up when Santa comes so I can give him a hug and say thank you?"
"Can you ask Santa to make sure he doesn't miss any kids house."

The last three really got me.

Well, the time finally came to tuck our little Princess in, so that visions of sugar plums could dance in her head. We all got comfy on her bed and read Merry Christmas Little Mouse and 'Twas the night before Christmas she snuggled in her excitement barely concealed and shooed us out so she could sleep and get Santa here even faster.

Lily and I settled down to watch a couple of movies together while waiting for the little princess to be deeply asleep before putting some presents under the tree. Fatigue overcame both of us and we drifted off for a short summers nap.

Christmas day - I woke up, it was 6:25 .....hmmm suspicion.
It was quiet, too quiet.
O.K. who am I to argue, I close my eyes and wait.
It didn't take long, at 6:35 our bedroom door is flung open and "Mummy! Mummy! Daddy! Daddy! Get up! Santa came! Santa brought presents!"
"Did he? O.K. we'll be there in a minute, you go wait at the tree for us."
A quick Merry Christmas and I love you between Lily and I and we head off to see our little girl in her joyous rapture.
Now, I want to note that last year Arwyn aged 4 tore through the entire stockpile of presents in approximately five minutes. Hardly even looking at what the gift was before tearing into the next.
This year, each one was excitedly opened, with expressions of "I wonder what this one is?",  "who is this one from?", "WoW! It's just what I wanted, thank you (insert appropriate name here)".
There was no greed of asking if there were more, there was no disappointment about any of the gifts. It was perfect behaviour.
We moved onto breakfast, pancakes and maple syrup for Arwyn and bacon and eggs for Lily and I.
Everything progressed exactly as it should have.
The phone calls from relatives.
Putting the batteries in the toys.
Cleaning up the wrapping paper.
Figuring our how the electronic ones work.
Snacking.
Having Christmas lunch.
Napping.
Then the drive to spend time with loved relatives.
I love the warmth and greeting of family on the holidays.
I love walking into a house that is just packed with family and friends, where all are welcomed and accepted.
The conversation, food, drink and stories are passed around.
Happiness was had by one and all.
More naps.
Arwyn was once again in her element as the centre of attention.
She showed insane jealous when her "boyfriend" cousin Doug introduced his girlfriend. Fortunately, Doug and Cassie were very switched on and Arwyn was allowed to be Doug's special girlfriend.
The evening was capped off with leftovers, cards and heartfelt wishes of health and happiness for the coming year.
It was, without any doubt in my mind, a perfect Christmas.
I want to thank my family, and friends over the world.
I want to thank my extended family here in Australia for making me a part of their family.
I want to thank the spirit of Christmas in all its various forms.
I want to thank my little girl for being the perfect, loving, caring, silly, happy person she is.
I want to thank and tell my beautiful wife for all that she does, all that she carries, all that she hides and all that she is how much I always have and always will love her.

Merry Christmas to all.

Moments in History.

(Please note: if you are reading this blog for the first time, you need to start with the post entitled " The reason" )

Blog entry preceding this one is "The week that was chemo."


Lily: I honestly could not think of a topic for today's post. I have several in mind however they are better left for when we really get into it to give us the most amount of experience to work with.

So I have gone with a combined list of short stories, incidents, trials and tribulations to record for all time, memories that may soon be forgotten due to brain farts ( it's a medical condition look it up). (This list may be added to, as the memory improves upon looking at old photos, journals etc).

J.J:

I had something witty, charming and articulate written while I was in hospital. Then Lily logged in  at the same time as me and it was gone, lost into the ether never to return. The trouble is, I'm in a different mindset this time around. So, I will do my humble, bumbling best to correct Lily's revisionist history.

1: Lily's pregnant pauses.

Lily: Some of you may or may not know that it took a few years to get pregnant with our first child Arwyn. Four years really. Four...hard...long...back-breaking...legs up in the air, another blood test really? years.
J.J had been tested with the results of " You have SUPER-SPERM Mr J.J!!" to which J.J puffed out his chest and strutted his stuff around the doctor's office proud of his manliness. Which meant that I was the problem. My diagnosis came back as "unexplained" for while I had everything working, I needed help being regular at the actual ovulation part. So I was placed upon fertility drugs, first tablets, then needles and then WHAM, three years later, we were pregnant!

We made it to the 12 week mark, no dramas.
We made it to 4 and then 5 months pregnant, again without incident with the exception of Lily's place of work cutting her shifts from a manager who had also called her retarded with down syndrome (because of my facial appearance) the first day he started work. Why did he cut shifts? His response, because I was pregnant and being too demanding by requesting to work in other sections that didn't require me to constantly lift heavy objects. Fucker! I so wish I had been of the right mind and sued him for discrimination.

At six months pregnant, we only had one car between us. Usually J.J would catch public transport to his place of work while I would use the car and then pick him up at the end of his shift at the restaurant.  One day, I had to get up early to go to the doctor's, and through a miscommunication which we'll just say is all J.J's fault, I was key less to get back into the house. So a pregnant woman, returns home and desperately needed both a bathroom and was feeling hungry after months of being nauseous. In my mind, I had to get into the house and I was going to do what I had to do to get into it.... so I climbed over the balcony and shimmed along the outside of the railing to climb around the security fencing (left up from a previous owner but did absolutely nothing). Not once did I think I would fall, but I think back now of what could have happened and what we could have lost and ......yeah stupid act number 1.

J.J: First things first - Yes, I'll accept responsibility for the house keys incident. Lily would have gotten up at some ungodly hour to get me into a do nothing day in a cafe that was in its death throes. I probably had the house keys on me, having forgotten to give them back after going back upstairs for something essential I forgot. Like my knives or the book I'd get to read with no customers coming in.

In my defence, it did mean I was now locking the door.

Who says men never change.

2: J.J's inability to reverse.

Lily: Sorry honey, but you said I could...even if it was a moment of weakness, you know my competitive nature is always going to take over and use your weakness to my advantage. 

So, not once but twice has the inability to reverse out of our driveway left us having a tiff over who gets the car. The first time was when we had made the purchase of "Natasha", our silver current car. J.J was doing night shifts at work  6pm - 6am scenario and was still adjusting to the sleeplessness  / over tiredness of the transition. As J.J had been the one to purchase the car, make all the arrangements he was going to pick up the new car (the silver one) by driving our old Magna "Boris the Red" to the dealership, park it across the road, drive back in the new one and together after my job had finished for the day we would both go out and get it.

Like any good wife, I woke him in the afternoon as per instructions, half asleep he got up, got dressed, grabbed the keys and then went to get the car.

That was our first mistake.

I should have made sure he was awake to begin with. After I waved him goodbye I turned to go back into the house. It was only then that I heard the scrapping of metal against metal. J.J had reversed into the old rusty mailbox. To add to his crime. Instead of stopping to see what the noise was - the man floors the accelerator to finish a long line down the side of the car with an indent into the side of the car and the only reason he stopped was because he heard my cries of " STOP - OH THE HUMANITY - STOOOOOOOOOOOOOP"!

His second reversing incident - which just cemented that the man did not have reversing skills at all, came on an early shift for him. 6am - 6pm. I set the alarm for 5am for him, he got up, got dressed, got in the car and then I heard another scrapping followed by a thud.

" For fucks sake really?" I muttered in my half awake / half asleep state. In my jim jams, I dragged myself out the front to be confronted with  the following:

Right.....

Hmmmm....

So, 

And before I know it, J.J takes Boris the Red to work and I'm left to wait for road side assistance - yet another sleep in robbed of me.

(For argument's sake I have been involved in two on the road accidents. Both were not my fault (ask the insurance companies) and both were at the hands of little old ladies who didn't realise that when a car is in front of them that you are NOT suppose to hit them just because you saw that the driveway/street you wanted to enter was going past you - try being in the correct lane before you turn, just some advice.

J.J: I will fully cop the damage to the two cars.

No excuses.

I mean its not like I ever wanted to learn how to drive. I did only learn in order to drive Lily to the hospital (see an Unforgivable crime). 

3: The infamous line Lily's father said when the Celebrant at the wedding asked....

2002 we were married. J.J had been out of his family's house since the age of 17.... or 18?? I was still living at home because ..... well, whose kidding who, I was quite comfortable living there as a university student. Up until this point, unlike my siblings, I had never had a proper boyfriend / girlfriend relationship. Sure I had hooked up with guys at nightclubs etc, had some fun but the whole relationship thing just wasn't going to happen as I had major trust issues. These issues were thanks to my mother leaving my dad without warning so she could go and marry her teenage (meaning back when she was a teenager) boyfriend who apparently was now single. 

When J.J came over from Canada, it was just myself and father living in his home, and I'm sure I was crushing his hectic social life :) (love ya dad).

So at the wedding, J.J and I looking gorgeous, we are into the vows and the celebrant turns to my father asking if he had my father's permission to proceed with the wedding, you know the father giving away the daughter bit - My father with all his grace, eloquence and love for his daughter replies " Blood oath I do!!"

Love ya Dad, don't ever change, you're one in a million. :)


4: Phrases coined in our house:

"Lily Logic" - This is where what has been said only makes sense in Lily Land.
(J.J: Lily logic - I'm sorry, I don't understand it. I can speak it or at the very least fake it. But it certainly is a real thing and I'm not entirely certain what I am going to walk into. So, to Arwyn, I hope you do take on Lily's madness, er I mean logic, and at the same time can pick up enough from me to keep you passive and calm no matter what is happening.)

" J.J's sliding scale of Time" - 100% applied to J.J and his lack of speediness to complete tasks set for him by his loving and beautiful wife Lily. So on J.J's sliding scale of Time, when Lily asks J.J to change a light bulb and he says  yeah sure I'll do it later..... later will be become six months.

5: Lily tries to change the light bulb (in a ceiling fan) which results in the fan and light to no longer work.

Lily: Getting in before J.J. - I had asked him to change it, he didn't. I got fed up and tried myself, it broke.... that's what happens when you use the J.J sliding scale of time.

J.J:  sliding scale of time...pfft

I'm a procrastinator. Always have been, always will be. If I do say I will do something, I will do it, it just might not be when you want it done. I mean, it is Your deadline isn't it? Not mine. So, yes, sometimes, I do take a bit longer to do things than others. The light bulb is a different issue. The light bulb burnt out WHILE I was at work. Not before, not a day before, not a week before, but while I was at work. Lily, decided to pre-empt the sliding scale of time, fearing something akin to techtonic plates and tried to fix it herself. As it turns out, if you turn a screw too much, you can actually pull the cables through the socket. So, we were left without a light in the ceiling fan in the lounge room. How long do you think it would take to fix and replace that? A day, a week, a month? It went on for close to three years before we finally got it replaced so sliding scale of time is definitely contagious.

6: An unforgivable crime (post Lily's Cesarean)

Lily: After the birth of Arwyn, I had to stay in the hospital a few days due to having a Cesarean. I was told that I could stay a few extra days however declined this offer as the young redneck white trash woman in the bed beside me and her high school boyfriend were constantly lowering my IQ with their verbal assault of every swear word known to exist (and some I learnt for the first time) as they berated each other for god knows what reason.  Poor little Arwyn, (and their own newborn for that matter) did not need to enter the world with such negativity. So home it was to be.

Having your belly sliced into was a small price to pay to get a wonderful gift, yet it denied me the right to drive. J.J at this point had only just got his full driver's licence and for whatever reason, it was deemed that my father would drive us the 45 minutes home. With a pillow across my belly so that the seat-belt wouldn't hurt me, we drove home.

Once home, (on the same day I got out of hospital) we settled in - me fussy about Arwyn, J.J and my dad in the lounge room watching TV. Dinner plans were mentioned upon arrival and so we all waited. And waited. A few hours went by and nothing yet had been done towards making an effort with dinner in mind. Completely swollen with pregnancy and post pregnancy hormones, I looked at the pair of them just sitting on the lounge as I made sure for the hundredth time that Arwyn was still breathing (new born, first time parent syndrome) - Fed up, I went to the kitchen making as much noise as I possibly could and made dinner for the evening - and two men, sat on the lounge and watched that frickin TV while their wife and daughter having had her belly sliced opened to bring life into the world (which they could never do), and still managed to make dinner for everyone in the house.

Now I'm not one for holding a grudge or anything (stop pissing yourself with laughter if you truly know me), but yes.... a moment in our  history that I will not forget.

Defend that one, Mr J.J!! :)

J.J's defence: The momentous day to have Arwyn finally arrived. So, after being berated and beaten into learning how to drive so Lily while heavily pregnant wouldn't have to - Lily decides to drive to the hospital.

I sit in the passenger seat, Ted in the back, Lily is ready to pop and calmly driving herself in. Which includes hitting the horn, giving the finger and cursing like a sailor at the idiot drivers that dare to cut her off.

It was more of the same on the way back home. Lily sat in the back with our gorgeous little girl in the capsule next to her. I sat in the passenger seat and Ted drove home. Not sure why I didn't drive, I think Lily whispered in Ted's ear about not letting me. We stopped at the shopping centre for a few supplies and Lily had a legitimate whinge about the speed Ted took the speed bumps with. Finally, home. 

Settled.

Or so I thought.

I will fully admit that Ted and I did sit down and watch t.v. and Lily did get up and start making dinner. However, I want it stated that essential dinner questions like "when would you like dinner?" or "what would you like for dinner?" certainly help. its true, Lily did get up and start making dinner, loudly, and I've been hearing about it ever since. But this falls into the category of dumb boys, we don't understand subtly and nuance. If you want dinner, say so, tell us what, we Will make it.

7: Arwyn's first steps:

Lily: For Arwyn and myself I have been keeping a diary for her of all her moments from birth up until her current age. I plan to keep this up until her 16th birthday, have the pages bound and turned into a book to give her as a birthday present. This entry, is taken from that proposed book.

June 27^th, 2007.

Wednesday, 6:34pm.

Dear Arwyn,

                        You have just fallen asleep in your cot, and your father has also gone to bed due to a long day at work…and so I am left with my thoughts about you. You are very much mobile at this age (seven months). You are crawling everywhere and getting into everything. One minute you will be in the lounge room the next you will be out on the verandah having your father come look for you.

            Today, you stood!!!

Now you are probably glancing at me from whatever god awful hair-style you have created for yourself (This is just an assumption – because as you are aware, I have a love of long hair, probably making you have long hair since you were little – and in a fit of rebellion you chopped off all that to ‘make a change!’…which is why I say god awful – but I digress…this is just an assumption); as I was saying, you are probably glancing at me from underneath your locks going “Big deal!...I can stand now.” However at seven months it is pretty impressive. You used a Huggies Nappy box to help you do it – and you were ever so pleased with your accomplishment as was I.

One day later…

            Last night you took your first steps (assisted of course). I was laying on the lounge room floor, you were crawling all over me as you are want to do. You used my bottom to pull yourself up into a standing position. I sat up, held your hands and then excitedly; you took your first steps towards me!! Oh Arwyn, it is one of the most magical moments I have ever experienced – you were smiling, you were laughing…a large ball of energy centred in on my chest and it beamed with light that only a proud parent can have. CONGRATULATIONS!!!

                                    I Love you – Ma ma.

The week that was chemo.

(Please note: if you are reading this blog for the first time, you need to start with the post entitled " The reason" )

Blog entry preceding this one is "Dreaming of me as I dreamt of him...a letter." 


To date J.J. has had eight rounds of chemotherapy treatment. Before we were hoping for remission as a result but as we have been told, the treatments are now for quality and quantity of Life.


So the week that was...


MONDAY:


6:30am and Lily is woken by her alarm clock. Dragging her feet as she wipes the saliva from the corner of her mouth she barely glances at the full length reflection, she glimpses her swollen face and can feel the bone disease that ravages her once passing looks. She has forty-five minutes to get herself ready, their five year old daughter ready and her husband J.J ready - first things first, let's check Face book.


7:30am and somehow they are all in the car. Lily as she has done for the length of their marriage has assumed the driver position. Now, because she is responsible for the daycare children in the car but also because J.J's driving abilities have become questionable under the influence of so many drugs.
Well, Lily thinks they have always been questionable after the drive-way letterbox was run down in the wee hours of the morning by the Magna, and the Nissan ended up in the front drain another early morning at the hands of J.J,  yet she would never mention this to him...


9am- The waiting begins in the Oncology department waiting room. A vastly long waiting room, with patients of varying degrees of decay or life of cancer. It's not pretty - it's just big and is a constant reminder of how many lives are affected by cancer.


11am- Our 9am appointment finally takes place. J.J lists his current ailments. Pain in calf muscle. The ability to urinate is lack lustre. The tumour on his forehead is getting bigger. Lily can see it though she tries not to draw attention to it. She can't help but joke within herself that J.J's becoming one of those posters in school showing the evolutionary process and places the tumour forehead roughly around Cro-magnon man period. Making inappropriate jokes helps Lily get through the day. The doctor expresses concern about the calf muscle and says further testing is needed and suggests Lily goes home.


12: 20pm - Lily walks in the door at home to a phone call from J.J who says she needs to come back to the hospital (forty-five minutes away) and pick him up. Already she silently sobs into the telephone saying " No! Bugger! okay.... I'll wait for the next lot of daycare kids at 1pm and be there soon"
1:45pm - Picking up J.J out the front of the hospital. Calf muscle pain is not deep-vein thrombosis. On the way home.
This day just sucks.


J.J:
I think I'm awake when Lily gets up by I choose to ignore the alarm, I feel like I only just fell asleep. I know I was awake and reading at 3:40, sometimes the sleeping pills just don't work. So I roll over and selfishly try and go back to sleep, I get 15 or 20 more minutes until little Princess Arwyn comes in and tells me to get up. I immediately obey of course. We do the advent calender and then hurry down to the car. I debate checking face book, and decide all I have time to do is log in.


Around 9am we saunter into the oncology clinic. The lineup for the clinic is the longest I've ever seen, I brace myself for a long wait. It's always pleasant to see the same faces in clinic, its a way of measuring who is succeeding and who isn't doing as well in their own battles. It's also a way of catching up on the faces you don't seen any longer. This, will sound terrible, I can't help it, but I always have to stifle a sneer when I hear of someone doing exceedingly well. I truly do wish them well and I don't bare them any ill will, but I can't help but think...


Two hours after our appointment time, we finally get in to see the Doctor. We list all the new ailments that seem to be afflicting me. I thought the intermittent pain in the armpit would be of greatest concern, but he focused on the pain in my calf muscle and numbness in my groin. It feels like I just spent eight hours on a bicycle saddle. He explains that the numbness may be caused by tumours spreading to the spine. Yeahhhh! O fabulous day! Callooh! Callay! And we'll do an ultrasound on your calf to rule out DVT. As its unscheduled it could be a few hours wait. I'm suddenly very grateful to Kylie, Stu and company for the Kindle. We recommend Lily take the little ones back home. As it turns out I only wound up waiting 30 minutes for the scan. I think I rang Lily to come back and get me just after she got everyone settled.
She was clearly unimpressed.
I told her to wait and come get me after one. We've sort of gotten used to this running around and racing back and forth. It's still annoying though.
The good news for the day was no deep vein thrombosis.


TUESDAY:



7:30am back at home to get J.J, his suitcase for chemo and Arwyn. They are off to the hospital for J.J to tuck and roll out the door to admit himself for his week long treatments.


9:20am - back at home, daycare can finally start with some degree of normality.


9:30am - Lily realises the kids can't go outside and play as a large branch has half broken off from the last storm that came through over the weekend . It's from the Jacaranda tree in the backyard and is hanging from the tree in the play zone, thus is a hazard. If she wants the children's energy to burn off, they need to run around - she pulls her socks up, puts on her man gloves and gets the axe from the shed she loathes entering (yet there's a twinkle in her eye as she gets to play with something sharp). The daycare kids play in the undercover area well away from the strike zone and Lily chops wood (said with manly grunting).


15:38 - Lily's head starts pounding...headache starting in on left side
16:30 -eating KFC for dinner, can't be bothered cooking, Arwyn having Wiggles spaghetti and toast.
17:35 - Lily picking up night time day care kids


1800 - Lily phones J.J to talk but he can't be reached. He wants her to edit his post for his own blog yet she can't as she doesn't have access. Lily continues caring for other people's children as well as entertaining Arwyn.


19:30 - "Why isn't J.J answering his fucking phone?"


20:45 - Lily finally gets onto J.J " Why weren't you answering your phone?
23:53 - Headache still in full swing. Lily attributes it to mowing the lawn during the day. It always happens. Whether it's the fumes, the vibrations, the noise - regardless, mowing the lawn may mean neatly manicured lawns but it always means mind-searing agony as well. Lily is ready for bed.


J.J: I want to ignore the alarm again, but I know today I can't. I still need to move quickly to have everything ready to race down to the car when Lily gets back. I give Arwyn a big hug and kiss and we do the advent calender again. As we are going outside Dr. Seuss (the cat) makes a break for it and I quickly have to chase her back indoors. We play sticker car (I won), eye spy (Arwyn won) and knock knock on the way into the hospital. The traditional hugs and kisses are exchanged.


I head upstairs to the oncology ward, already knowing that there is going to be some miscommunication regarding what was meant to be happening today. Sure enough, I am told to go to the daycare unit and wait. The day care unit tells me to wait as well - they can't run the chemo and do an MRI at the same time. So my 8:30 arrival was pointless as the MRI wasn't scheduled until 12:30. Miraculously the got me in to it 90 minutes early. Not going to complain about that.
Around 1pm I get to the ward and settled into my bed. Only two others in the room, one I've shared a room with several times before, nice bloke named Brad - he's a Kiwi, a year younger than myself, and kept himself busy before getting cancer of the oesophagus by having eight kids. The other fellow is an elderly German man, very friendly. We find out that he is incurable as well, which starts off a conversation about Lutheranism and God curing me.
Around 4 I get a visit from my radiologist, and he happily informs me that it doesn't appear to be cancer spreading to the spine and he won't be doing radiation on that spot.
Whew....
Dinner was fairly unappetising Honey mustard chicken, mashed potatoes and zucchini with chocolate mousse and custard for dessert.
I'm now fully settled into the old routine of chemo. It's now just a matter of sleeping when I can and watching the time go by until I get to see the two loves of my life again.


Wednesday:


7:25am - Lily is woken to tiny perfect fingers poking her eyes and exploring the inside of her nostrils. Her five year old daughter Arwyn slept in her bed last night. A treat for Arwyn, for Lily it is a sense of safety and security for without an extra pair of ears to hear any noises during the night, Lily must be the nightwatchman  - the thought of anything happening to that perfect little girl would destroy both Lily and J.J more than what the cancer is doing to J.J's body.


16:30 - Ring J.J and Lily is informed that he was sleeping and can I ring back later. The boy doesn't sound well, and there's nothing I can say or do to make it better. Though this is probably girl thought and he probably just is tired.


20:00 - Finally get to red rooster for dinner, she can't be bothered cooking. Lily thinks she is a bad mother.


1am - Lily finally goes to bed, and so the chemo tradition of being unable to fall asleep until later as her husband is not with her begins.


Thursday:


8am - Lily feels the back of her throat with her tongue and knows it's the beginning of a cold. Another chemo tradition seems to be on it's way as without fail, every time J.J has chemo a cold goes through the house - a cold to a chemo patient can be deadly.


16:30 - Lily has great clients who allows her an early mark to visit J.J in hospital. Subway for dinner tonight. J.J's spirits in high gear.


20:40 - Arwyn and Lily showered, Arwyn fighting going to bed by being cute and adorable and Lily senses that Arwyn knows she's being cute and adorable.


Midnight - "Fuck it" , Lily very angry with herself for having another late one wondering why she can't be in bed at a reasonable hour.


Friday:


8:54am - Lily is pissed at herself for self-censoring. This blog was suppose to be about truth, about their truth, about their feelings. She wonders if it were her that was terminal would she be able to speak the harsh truth that needs to be said - but then she also wonders what is the point, don't kick a dog while it's down. Lily at a low ebb herself - placing  it to all the dinner junk food she's consuming. "God, have to stop eating,  - going to do the 48 hour famine, cleanse the body, de-tox, need new thoughts - FLAT"!!


20:10 - It's been a very very blah day. Not as flat as earlier but still she asks, - "is the day done yet?" She's been working since 8am.....still not finished, bring on 9:45pm.


Saturday:


8am - Arwyn's Swimming Lesson


9:45am - Lily visits the man in hospital, bringing him goodies and most importantly - them!!


12pm - Leaves hospital, drive to shopping centre arrive 1pm, only have 45 minutes to wait in Telstra line to pay phone bill and get essential shopping done like bread, milk, food in general. etc She also went and bought a small wooden chest for J.J and for Arwyn. J.J is planning to write cards for all of Arwyn's future events - her birthdays, Christmas's, graduation from high school, university, first major holiday, first major job, engagement, wedding, grandchildren. Lily cried when she tried to explain the chest's meaning to the salesgirl.


2:05pm - Arrive at awesome hairdresser's for a cut with Arwyn


4:30pm - Drop in on friends


5:45pm -  still don't wanna cook and decides to eat out with said friends.


7:30pm - Arrives home, really, really tired..... fighting sleep to put Arwyn in bed and stay off facebook and blog.


8pm - Staying off face book and blog is not happening...... 8:07pm forcing myself to get up from compu..... 8:20pm Arwyn now in bed, back on face book. Lily should be doing her paperwork for the business, but cannot be arsed.


Sunday:


3:40am - Lily had had twinges of cold or flu like symptoms for a couple of days. A twinge here, a sore throat there, but it was usually only in the early morning and would disappear by noon. She did not expect to be up at this ungodly hour with instant man-flu and conjunctivitis of one eye. She's wondering which halfling she was infected by but also recognises that she's been in both a hospital and restaurant on the same day one of which would be the likely culprit. She's due to work in three hours and has no way to contact parents at this hour. Today does not bode well... she wonders if J.J will even be allowed to come near her with all these infections.


6:36am - Lily is up and feels like she is Patient Zero for the Zombie apocalypse. She just wishes her clients would get here on time so this feeling for being up for nothing goes away.


12:13pm - J.J home asleep. Three daycare children asleep. Arwyn has laid claim to the TV in the lounge and wont let Lily down for a kip.... god is this day over yet.


12:19pm - While looking at an old journal entitled " Ode to Lily's Ovaries" (another therapeutic tool on the infertility roller coaster), Lily came across an entry that makes her sadder than what she thought she could be at the moment,
" July 25^th, 2005.

As previously mentioned, J.J is still giving me love poetry every day. Sometimes they are poems; sometimes they are lyrics from a song. Today he has written one himself, and while it may win no prize it continues to win my heart.

Death holds no fear for me
Save only one
That I might die before you,
Leaving you to go ahead in this world without me by your side
Sharing our joys
Our Passions
Our Fears
Our Sorrows
When Death does call upon me
Beckoning my time to go,
I want to be able to gaze upon the face of my beautiful bride
With eyes more luminous,
More grief stricken
More grateful
Filled with an unrepeatable sorrow,
And whisper in your ear
Only the vastness of the eternal Heavens
Will ever be able to speak of how much I love you."

That was a hard one to re-type... to reread. It's lovely in its sentiment of his love for me yet the implication falls heavy with a thud without an echo of sound for what is happening to us at this very moment.

19:19 - I am looking at J.J, no longer writing this in the third person as a form of this event happening to someone else, but looking at him because this is happening to us, this is real, so very real. J.J has the lost the ability to use his right hand to use a pen, to type, to hold things. His pain is more than he is letting on - and we both know that life is still going on around us, and will continue to go on... we understand, but I don't want J.J to be forgotten, ... for that matter I don't want our love to be forgotten, I don't want to be forgotten.


He's looking at me, filled with love just as I am filled with love for him.


But it's hard... because I am waiting to have my heart torn from my body by his death.


That's it, I can't write anymore tonight... 




Blog entry to follow "Moments in History"

Dreaming of me as I dreamt of him...a letter.

(Please note: if you are reading this blog for the first time, you need to start with the post entitled " The reason")

Blog entry preceding this one is "What they don't tell you in the cancer pamphlets" 

My dearest love,

Thirteen years in which we have known, thirteen years in which we have loved…but I knew long before we met that my love was destined from across the sea, half way around the world. I have always, always said that my true love was on the other side of the world, dreaming of me as I dreamed of him and who would have ever guessed that I was right.

Now you know that I am always right, even when I’m wrong – I’m right.  So listen carefully as I tell you of all our rights.

It is right that we have loved each other despite the non-believers who said we would never last.

It is right that we are each other’s match, we are our opposites, making up in the other what they lacked – the masculine, the feminine, together we are one.

Arwyn is the most perfect creation upon this Earth, she is our blood, she is our life; She is our legacy.

I am a hopeless romantic. And you know this. You know I still believe in knights in shining armour, of fairytales, and mythologies. You know I believe in all magical creatures despite the insanity of it all and I think my insanity is what you love about me. You know I place meaning on things like the weather, stars and full moons. …Even though it goes against your practicality.

Around my neck I wear two necklaces. One is the Christmas gift you gave me last year of an Infinity pendant and the other is the Ankh pendant I bought myself in my twenties. The first represents how long our love with last; the other for me represents our daughter, for she is our life. You know that I like owning and wearing jewellery with meaning, and while it took you eight years of our marriage to pick a piece that I deeply love and enjoy, I know that it took you so long only because I am “particular” when it come to my jewellery – and for that, making your life difficult I apologise.

This is not a farewell letter; so don’t take it as such. This is a letter of today. A letter for you to know, to realise that my love for you has never waned over the years or in particular these last 18 months as we battle together the toughest fight of our lives. It is to give you strength when you are at low ebb. It is a reminder that you are and always will be the most important man in my life and Arwyn’s life.

I want to remind you that we have built a house together in which we are raising a family. The family may not have been as big as what we wanted for it appears as though we must struggle through all our facets of life – but this little family is ours, and ours alone. We hold it together, we love it so deeply and together it works; somehow we manage. Yes, I freak out when the bills are due and the money barely scraps together but somehow we work it out and I apologise for all the times I started putting price tags on kitchen items to take to the pawnshop every time an electricity bill came in.

We aren’t one of these family units who go travelling every chance we get because we have to work to provide a better life for Arwyn. But the moments we have together, at home with Arwyn are the ones I truly value. I am glad that before you met me you lived a hundred lives with your friends, travelling seeing parts of the world that I could only dream about. However when you tell me the stories, I am right there beside you. Walking the streets, smelling the air, the atmosphere appearing around us and through you I have lived a hundred lives. I am glad you have lived enough for both of us.

You once wrote me over ten years ago that this is what you wanted,

            “ At the moment I was just letting my mind wander, thinking of you, a future with you. I was thinking of what we’ll look like when we are in our 70’s. What out kids will be like, what our grandkids will be like… and how we’ll spoil them and buy them noisy Christmas and birthday presents to drive their parents nuts.

            I thought more about what little things I’d want to do with you, things like flying the kite…gardening, walking the dog (or will that be dogs?) I think when I look back on my life, when it’s coming to an end, that those are going to be my fondest moments to recall. The grandiose moment (and I hope there will be many of those) will pale in comparison to the smile that will come to me, of my time that will be with you”.

I hope every one of our little family moments have been what you wanted as a family. The Christmas mornings with Arwyn, her birthdays in which we put a present on the doorstep, ring the doorbell to see her come flying down the hallway excited by the thought alone of getting a special delivery just for her. I hope you treasure all our gardening moments, the family that gets ticks together – sticks together. The cuts from that horrendous weed “asparagus grass” that our home’s predecessor planted and all our vain attempts to eradicate it from the yard and the amount of tools that have died a heroic death in our attempts to pull up it’s astounding root system. The improvements we have made to the yard and how our little home feels warm and inviting.

I hope our memories of our pets will sustain you. From our surrogate child, the cat Nemesis who was bought to placate my need to have a child of our own who fell out the bedroom window and clung to the side of the house Gandalf style before slipping off the building to be perfectly fine on the cement below. To the GREAT FRICKING DANE – whose dopey demeanour made you love him despite the drool bath coming from his mouth.

Sidenote: As we got to own two dogs thus completes my contractual obligation you wrote to me one time – although we never named one “Buster” because I felt that the other dogs would laugh at him/her.

I wish we had more family holidays under our belts and for that matter I wish we could have experienced a honeymoon and be completely involved with each other under some island paradise full moon with the waves lapping at our ankles. I am glad we got to do Cairns with Arwyn, and I’m glad we have so much video from the trip. And so I will make sure we have another family holiday together.

I need for you to know, to not feel bad about what is happening to us. You are and never will be a burden and if I could, I would slap you upside the head for even thinking it, but you are safely in your hospital bed, lucky you.

It is not your fault with regard to the lack of an enormous death and total disability benefit. Think of it this way, we are keeping up the tradition of struggling through diversity which we know we can do, and somehow I’ll find a way to keep Arwyn in the princess lifestyle we have kept her in however because we have done an excellent job in raising her thus far, I know in my heart that she would give up everything to save you right now. We didn’t plan on either of us passing away so soon into our lives together – who would? You are not at fault. None of this is your fault.

I don’t need anyone to take care of me after you are gone, because I’m tough, and I’m a stubborn bitch and I’ve had words with my own body and disease and we have come to a mutual agreement that all pain will stop as of this moment, so stop worrying about me my love.

You have told us both often enough of your love for us – but it never hurts to hear it again and again, so keep saying it often it will get you through the nights you are away from us while having treatments.

We love you.

Don’t ever doubt that.

We love you, we love you, we love you, and we love…

Thinking of you and looking very much forward to seeing you tonight.

Our love always, your girls

Princess Lily & Princess Arwyn.

xxxx

P.S Suck it up Princess, you're not dead yet.




Blog entry to follow " The week that was Chemo."

What they don't tell you in the cancer pamphlets

(Please note: if you are reading this blog for the first time, you need to start with the post entitled " The reason")

Blog entry preceding this one is "The Ghost of Christmas Past" 




Lily: The Spouse's viewpoint

(Warning: Friends and family members may be offended by what I write. I mean no disrespect from what I say. The words are entwined in deep, sensitive emotion, I need a forum in which to release them, otherwise I can not be a parent to Arwyn as I know the emotions will consume me and I spent the better part of my late teens and early twenties being depressed. Those are the times when I should have been living and I can not do that to her or myself in my thirties. If J.J's situation has taught me anything it is to live and experience - So Family, be warned, I may say some things which may (or may not) hurt feelings, just place it down to the ramblings of someone in deep, deep, soul-crushing pain and then forget this post, because soon I will need you in that darkest moment.  It also includes my thoughts on sex which can also be disturbing, so let's just skip this post all together now shall we).

This is my whinge, if you don't like it, bugger off...

When J.J was diagnosed and we attended the introductory " So you've got cancer" lecture, you are given a power-point presentation on the in's and out's of what happens during chemotherapy. You are also give a pile of pamphlets which you promise yourself you'll read every one of them when you get home.

The pile of pamphlets current location is: UNKNOWN.

I mean you can probably assume that there is a chemotherapy one, one for support groups in your local area; what to do when your hair falls out, religion and that God is the answer. There is probably even one for a social worker, an emergency number for the oncology ward should things go awry during treatment but these are all patient orientated.

Now, this is going to be hard for some of you to read as it will most likely read as me being selfish and self-centred for it is J.J the one with the cancer diagnosis. It is him who has been given "The Green Mile" but it is how I am feeling and if I do not purge myself of these thoughts, I know it is going to do more harm than good.


I'm angry. I am so fucking angry. Cancer is a cunt. Yes, you read right, I said the word "cunt" and I hate that word almost as much as I hate cancer. J.J knows that I shudder when I hear other people say it yet I use it freely because there is no better apt description of what cancer is and how I feel about it. And I'm angry. I'm angry at J.J for getting cancer and having Neurofibromatosis (NF1). I'm angry that he was so blase about seeing doctors for any reason, whether it was from a cut, or sliding off his bicycle going under a moving truck and having knee pain; I'm angry at his parents ( who I love dearly) for not getting the diagnosis of NF1 for their son during the scoliosis period of his teenage years. And I know that is ridiculous so apologise immediately for having the thought; but I am angry the most at J.J's doctors from his childhood.

If NF1 is a common disease (1 in every 3000), and the disease has been known about since 1882; and J.J was seen by doctors during his teenage years for a severe case of scoliosis (commonality of NF1) why weren't the fibromas (lumps under the skin) ever looked into? 

J.J and I have had sex (shocker) - but even before we saw each other naked I had seen him without his shirt and noticed these tiny lumps. Now, I'm not a doctor, but I noticed that they were different and not "normal" upon the skin. When I asked J.J about these, he shrugged it away and said it was likely acne scarring as he had bad acne as a teenager. Though wouldn't a doctor see these and be even the slightly bit curious as to what they are?

I do not understand. I cannot comprehend.

Arwyn when she was born had one of the large cafe au lait marks on her back. Both J.J and I noticed it, and mentioned it to a few doctors who likely said they were just birth marks and would fade with time. Arwyn at about eight months old developed eczema and so from the age of eight months to two years she was put on every cream available to us. By two years of age, the G.P finally said that perhaps she should go to a Dermatologist, and it was he who offered the first view of NF.

I hate that J.J and Arwyn were diagnosed at the same time. I think of all the time and experience J.J would have had in coping with NF that he could pass onto Arwyn and myself. What to look out for even though each case of NF is different both inside and outside of family cases.

I can't seem to get pass how a doctor misses it with such glaringly obvious and severity of symptoms (side-effects or whatever you want to call it). FUCK YOU DOCTOR, fuck you, fuck your family, fuck, fuck, fucking motherfucker!!!!!!!!!!

Grrrrrr.....

Moving right along....

So what they don't tell you in those cancer pamphlets. 






For me this means being both mother, wife, husband and father. It means being the taxi driver, taking Arwyn where ever she had to go, driving J.J to his appointments and hospital visits. It means controlling the money, making sure the bills are paid on time. It's about organising. If you can't organise a military occupation then get up and go home because you'll never survive keeping things as normal as possible for your child as well as maintaining the house and being J.J's entourage. It means housework, housework, housework.   And it means yard work. The bane of my existence. I am all for cementing the world (sorry my hippy friends) because nature can go and kiss my fat arse. Not only do I have to contend with weeds with thorns (Who ever plants asparagus grass on purpose is fucking insane), I have to contend with cane toads, brown snakes, ticks, ants that bite and spiders.  I hate nature! No matter how much I prune, weed, cut back, mow - it grows back (sound familiar) and there is nothing I can do.

Many a day I have contemplated the actions of Muriel's mother in the movie " Muriel's Wedding", and setting the backyard ablaze to be done with it. But that would hurt J.J as he loves the backyard and I would never deliberately cause him pain.

YOU WILL NEVER HAVE SEX AGAIN:

(Parents, friends, in-laws avert your eyes this is the thing you never needed to know section)

Look, it's completely selfish of me to think this, but sex is non-existent. And I miss it. I love sex, I always have and always will. But you will never have sex again despite still finding your husband sexy and desirable throughout all his treatments. Sex, sex, sex - sometimes it is all I think about and more often than not you'll have to take care of business on your own (though don't get too excited about that thought because you wont have the time).

YOU WILL HAVE A LOT OF COLD SHOWERS:

See "You will never sex again".

YOU WILL EITHER GAIN WEIGHT OR LOOSE WEIGHT:

Unlucky for me, I am in the gain weight section. Hip ... Hip ... Hooray!
Whether you know it or not, when given devastating news you will either loose weight because your appetite has disappeared or like me, you will gain weight for several reasons.
1. In the beginning when you're taking on the roles of everyone, you'll have less time to cook be on the move a lot and still be hungry. To counteract that, a quick stop at a drive-through will alleviate the hunger but add pounds to the mid-line
2: You will recognise your own mortality and decide " Fuck it! I'm going to do what I want and eat what I want." Hence buttery goodness becomes your best friend.
3: Emotional eating is not your best friend - keep those emotions in line less your buttocks cast a shadow over the city you live in every time you waddle up a hill.

POSITIVE PEOPLE WILL SEEK YOU OUT:

They will make you feel bad. Sad but true since that is not their intention.
I am all for positivity. I am always for hope. I mean right at this minute, at 12:22pm in the middle of the day, a week and half after being told that the cancer is incurable I have hope that a magical fairy from the land of hope and dreams will take J.J's cancer and make it disappear, never to return (and hopefully take my fat arse with her). Realistically, that isn't going to happen. 
And the positive people will come out of every nook and cranny. They will tell you that " You need to think positively otherwise he'll never get better", and "if you don't think positively, if you don't truly believe that he will get better, than he wont".

What the fuck? So on top of all the emotions I am already feeling about my husband dying, you are now going to place guilt on me?? Fuck you! As if I do not want my husband getting better. As if I want him to miss out on his only child growing up. As if I want to spend the rest of my life alone when  we had promised to grow old together.

And then they'll include stories of survivors of cancer who gave up on medical treatment and"just thought positively" and they are still living after "x" amount of years. I'm sure it happens, I'm sure some people get lucky but I also believe that it depends on the type of cancer you have, where it is, if it spreads. With over a 100 different types of cancer I'm sure there are many people who survive it....but you telling me of someone else isn't going to help. It doesn't give me comfort and annoys me because I have to be polite and not offend you by telling you to fuck off as I have to maintain social protocol of niceties.

RELIGIOUS PEOPLE WILL SEEK YOU OUT:

Like positive people, these people use religion to guilt you into believing in the power of the Lord. (I respect all religions, all faiths - worship a gold cow for all I care but find out first if I want religion or god mentioned before you go and tell me that God heals everyone).


ALCOHOL:


Be prepared to have your alcohol consumption doubled or tripled. Once I started driving a car on a regular basis, I stopped drinking as my need to stop standing around in taxi lines in the middle of the wee hours far out surpassed my need to drink. So for the time I have been married, I rarely drunk. Whenever you fill out the surveys in the hospitals or doctor's offices, I would always put " Once in a blue moon" under  "Consumption of alcohol". Also my need to save money always out did my need to have a drink.
Now however, especially in the last three months, my consumption level has risen. However, because I am the responsible one of the family and need to be able to drive to the hospital at a moment's notice I really do need to pick and choose the evenings that I drink on. So the feeling that I need to drink will be there, but I may not get to as my responsible side responsibly makes me responsible. :)


LOOSING THE ABILITY TO TALK:


I was never a talkative person, probably made worse as my own bone disease drained any confidence from me. It was probably why I chose friends who I refer to as my opposite. Now I wont name her here just in case she doesn't want to be identified but this girl who I have known since high school was always the positive to my negative. Very social, dragged me out of bed to get to go places and made me participate in the world when I just didn't want to. She spoke enough for both of us when meeting new people until I was comfortable enough to take the reins of the conversation myself. With her, I feel that my confidence regained some of it's lost strength. J.J to me, was her male counterpart. Just as social, just as happy to drag me from my slumber to get me to do things and very, very talkative. He has a story for every subject and I have heard them all. At times during marriage hearing the same stories over and over can be painful, yet with J.J I never minded because it always saved me from speaking in social situations (thereby revealing my deformity) and because I actually enjoyed hearing the stories.
With cancer the ability to speak disappears....for all involved. J.J has either been sleepy or on his pain meds and because he is at home 24/7 he has gone from being a force or  a lover of life. He has lost the ability to speak (not literally) but there's no energy in him, no spark - it has been subdued, silenced by the exhaustible nature of illness. My own exhausting lifestyle of being all things to everyone, leaves me far beyond the reaches of tired. My brain doesn't work and the ability to formulate sentences out loud leaves me lacking. With the exception of the typed word....here I have a voice in as much capacity as my ability to think allows me.



J.J: (The Patient and the Spouse's point of view)

Cancer - I don't recommend it.
I wouldn't wish it upon anyone and I've had the misfortune of meeting truly vile and genuinely evil individuals.
I've never asked Why me?
I've said fuck several times.
When I, (I mean we, as Lily and I are in this as a team) was first diagnosed, I let out a sigh, and promptly got down to the business of curing it. I prepared to go to war. The only trouble is I am fighting a war with my own body, one way or another I lose.
We went to the oncology clinics we were given powerpoint presentations - none of it gave any specific information and everything was general knowledge that you sort of already knew intuitively.
We were given hope and positive feedback and thinking.

Then things went awry.
Fuck.
So they cancel chemotherapy and cast me outside to wait for radiation. It's a problem in cancer treatment. There are three main disciplines: Chemotherapy, radiation and surgery. Each discipline distrusts the others and finger pointing begins. Personally, I would have skipped last years radiation all together and gone straight to surgery after the chemo failed. if it was done soon enough it would have been a much smaller tumour that was getting cut out then the 15x8x9 cm monster that got removed.

During the treatment, you get sick. Everyone is different, I never once threw up, but I was fatigued. I was so incredibly tired all of the time. Which, to anyone who knows me, is just not in my nature. I want to be up and on the go all of the time. Work 18 hours in a day? No problem. Do that six days a week? No problem. Still be social on your single day off? Sure thing.
Now I was exhausted walking from the bedroom to the lounge.

It took its toll. Mentally I wanted to be up and doing everything I could, my body just wouldn't listen. My heart was telling me to push through it, get up and cook dinner, sort the laundry, mow the lawn. Take the workload off of Lily, she does so much to begin with. I just couldn't get my body to obey. Clearly the war with myself was taking its toll.

I spent a lot of time living on my own. I've been as self-reliant and self sufficient as I can be for as long as I can remember. So I resent being looked after by other people. Now, I can't help it. I need Lily to drive me to appointments. I need her to kick me up the backside to go to the doctor when a new symptom appears. I need her in oh so many ways.
I don't want her to feel anything but love from me.
I have never stopped loving her and I never will.
I look at her everyday and I find her more and more desirable. She is as sexy and as beautiful as the day we first met. I love her with all of my being.
I would love to go back to having sex and making love to her. Sadly, the chemotherapy prevents us from even kissing for seven days after treatment. Then, the fatigue kicks in and the desire is beaten down by my body laughing at me, saying 'screw you arsehole you just poisoned me for a week. I'm not letting you have any pleasure until I am good and ready!'
The pamphlets tell you that your sex drive will wax and wane during treatment and that you have to be very aware of being cytotoxic etc. All it boils down to is bullshit euphemisms for kiss your sex life goodbye.

So your sex life drifts by.....

Body Image - I can deal with losing my hair. I've got an awesome head for being bald. Trouble is, you lose your facial hair as well. I don't like being without my beard and moustache, it makes me look weird. Trouble is, if treatment goes on long enough you lose the rest of your hair: the hair on your arms, legs, armpits, eyebrows, eyelashes - that really sucked as it looked like I was welling up all of the time. And your pubic hair. Everything goes. There are areas I never even realised I had hair that were suddenly barren and smooth. It grows back, but its still unsettling looking at a white strip across your brow where you eyebrows used to be. All of the body image pamphlets are directed at wigs for women, I can accept that. But what about look good feel good sessions for my missing beard?
When we were first told I had cancer, Lily wiped away a tear and quipped that I would try anything to lose weight. We both laughed.
I've gained 14kg since I was diagnosed. All the doctors are telling me that's a good thing. That I'll need the weight to keep going if things go bad. I've thought the opposite - that if things go bad then I'm going to die young from cancer and be fat as well. That's just a double whammy.

I hate Elisabeth Kubler-Ross. For those of you who don't know who she is, she wrote a book entitled On Death and Dying  in it she writes about the five stages of grief. I thought it was rubbish when I first read it, but I hate it even more when I catch myself doing things that she wrote about. Like bargaining. I've caught myself making 'deals' with the universe that if I don't do something I get cured etc.
Fuck that I say.
Now that the term incurable is being used - which annoys me. Call it what it is, just say terminal. I'm going to go off and indulge in buttery, deep fried, cheesy, creamy, fatty, salty, alcoholic goodness. If, by some miracle a remission comes around, then I'll deal with the consequences of a Roman gastronomic orgy of excess when I have too.
But if the end is nigh, why deny myself some hedonistic pleasures?
I've rambled in this post.
I know it, I haven't really said what I want to say. So I'm going to try and articulate what is really on my mind. What the pamphlets and powerpoint presentations etc didn't tell me.

I feel bad.

Not because I have cancer and not because I don't have any idea how much time I have left, but because I have become a burden on Lily and Arwyn.
I didn't plan for this eventuality with a massive death/tpd benefit.
I feel bad that I am the one our wedding vows of in sickness and health turned out to be about.
I feel bad that I am not going to be there to hold their hands on the long journey of life ahead of them.
I feel bad that I am not going to be there to look after Lily when she needs to be looked after.
But mostly, I wonder if I have told  them both how much I love and cherish them often enough.
If I haven't I'll say it again.
I love you both now and forever more with each passing day and nothing will ever extinguish that fire. 




Blog entry that follows: " Dreaming of me as I dreamt of him...a letter."