The Ghost of Christmas Past

(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 "Fuzzy, furry, finned & feathered friends".

Not as scary as it might read humble reader. Just a list of Christmases Past in our lives that we would like to share with you.


Lily: I do not know about my fellow peer group, but as I am getting older, my memory is failing me. It could be from the nightly painkillers I take to sleep painlessly through the night or it could be something I smoked in my twenties (who's really to say :) This blog helps as a reminder, especially when friends comment about something J.J or I mention - then it gets interesting.

As mentioned in a previous entry, J.J arrived November 2001. A Canadian in Australia for the first time heading into a very hot Summer. To be fair going from the Canadian cold temperatures to our heat at Christmas time must have been a shock for him on top of everything not really feeling like Christmas.
I mean for me, as an Australian while I would like to experience one Hollywood cliched "White Christmas" moment, Christmas is not Christmas if it's not a barbecue in the backyard, cicadas making that noise that only cicadas can make and if the temperature isn't making you sweat as in the days before air-conditioning was affordable for all, then you're just not doing it right. Christmas is about backyard cricket, it's swimming in the pool or at the beach. And it's about family no matter what country you come from.

Now, for me, I always wanted to be apart of the BIG FAMILY CHRISTMASES that all my friends would complain about - where you have all the cousins, aunts and uncles, grandparents, great grandparents yet that would never be the case for I come from a family divided by geography, soap opera dramas and few numbers. When J.J arrived it really was just my dad, my sister and her boyfriend, and my brother and his girlfriend (I think they were together at that point).  Everyone else were scattered to the winds for the above reasons and if you include my father's reluctance to take part in the festive season with the exception of " Bah Humbug" I was already behind in providing J.J with an Aussie Christmas, especially when your siblings had to go their partner's family houses as well.

However, every year I would decorate the house and force my dad to get a tree despite his protests about the mess a live one makes.

J.J on top of what I could only imagine was a lack lustre Christmas in comparison to what he was use too, had to deal with surburbia and the Australia Native Fauna - namely all the birds and their songs of the very early hours of the morning - He hated them all!
(Excuse me while I laugh about it even to this day)
So for his first Christmas in Australia I managed to talk my father and my siblings into going into a gift for J.J as a way of welcoming him to the country. His gift was a Sydney Harbour Bridge walk.

Lily: Our second Christmas together was our first as husband and wife. During my entire existence before J.J, my family had always - and I mean always bought a Christmas tree from the Rotary Club. A real tree ( though not by Canadian standards) that gave off that sensory "smell" of what Christmas was. J.J refused and said we were getting a fake tree. It helped that I abhorred cleaning and the promise that a fake tree would require no cleaning at all sold me.  However, the price of a good fake Christmas tree was just staggering to my cheap-arse self. I mean honestly... who pays that much for a tree???

We did - at around $350.00. Once J.J picked me up off the floor from fainting at the shock of the price, again he sold me with the idea by saying that with each year we had the tree, we wouldn't be paying for a tree at all - and since it still looks as good as the day we got it, who am I really to complain...especially since there is no mess and it is now nine years old.

J.J.:

It's true, Christmas is a magical time that I've never quite recaptured here in Australia. The reasons are exactly as Lily said, I come from the cold, cliched white Christmas tradition. Although my immediate family is small, just Dad, Mum, my sister and I. We always had the big Christmas day festivities. We would go for Christmas lunch with my  Mum's family and then have dinner at my Dad's parents. Dad is the third of ten children, and whilst I never remember EVERYONE being there together for dinner there was  always a large contingent, espcially once the other grandkids started appearing.

Christmas to me was a huge tree, a roast turkey, honey glazed baked ham, sweet potatoes, stuffing, gravy, peas, carrots, and any other bits and pieces you can think of. The house was always warm, noisy, welcoming and fun. Christmas always had lots of food, sweets, relatives that you only saw once or twice a year, football watching on the t.v., afternoon sleeps, laughter and good cheer.

As the years went by grand parents passed, aunts and uncles scattered to the four corners, the celebrations got a bit smaller but never lost that festive magic. Even when I moved away to Ottawa, the years I would come home always had the same joy. Which is why when I didn't go home I always tried to do a roast dinner on Fifth Ave for all friends that had no family to celebrate with.

So, in 2001 I came to Australia, I had settled in by this point, made to feel very welcome by Lily and her family and friends. The heat was bearable but unpleasent, I hate the Kookaburras, still didn't like the beer, but everyone did their best to show me a typical Aussie Christmas. The tree looked like it came from Merry Christmas Charlie Brown, the sausages and steaks were over  cooked and it seemed to be over far too quickly. But I'll never forget my first Aussie Christmas.

Since then, I've tried to find a happy medium between the two cultures. We do have a 7 foot tree with lots of ornaments, the stockings are hung on the piano with care, and we alternate barbeque with roasts. This year, it will be roast duck, with wild rice pancakes, sweet potatoes and asparagus. I suspect this may just be the most memorable and important Christmas of them all.

Lily: Do we really need to spell it out for you as to the reason why?

Last year's December was spent Monday to Friday in the radiation clinic late in the evening. I run a home based business in childcare and would  finish out my work day, prepare something for Arwyn (our daughter) to eat in the car and then the three of us would drive the 45 - 50 minutes into the Mater hospital that was giving J.J his radiation treatment. It was an exhausting month because I had also taken a night job with a restaurant to help pay the bills. It too was an important Christmas because it became that much more valuable when a loved one is sick.  

I barely remember the time. Exhaustion comes to mind but I have it recorded on video to play back. And while last year was an important Christmas - this year... this year just takes on a whole new meaning.

Arwyn is completely Santa obsessed. When she thinks her own behaviour is less than desirable she will ask J.J and I " not to tell Santa" of it. We have never used the whole " good children get presents, bad children get coal", so we do not know where her thinking has come from but Santa this year is big, and I really want to make this year big.

I want presents galore under the tree. For Arwyn, for me yet for J.J - what do you get him? I mean if he is looking at stage-diving with Death between now and a (overly generous according to today's doctor) less than two year period, "experiences" are the gift to give isn't it? Time with Arwyn and I is what he wants. Time with friends, laughs, fun - these should be what he deserves before he goes into that good night. And so here is where I ask people for suggestions. This is where I want you to comment - to suggest things that J.J's and my brain under constant emotional strain can not come up with. 

Our December this year has thus far consisted of receiving the bad news that the Cancer is incurable and that treatment is for quality and quantity of life. Tomorrow, December 13th, J.J will be in hospital for the beginning of a six day chemotherapy treatment. He wont be feeling the best the week that follows and who knows what else we will have to endure between now and Christmas but whatever it is, we'll go through it together...

Blog entry to follow...What they don't tell you in the cancer pamphlets.

Fuzzy, furry, finned & feathered friends.

(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 "Their first date occurred after their engagement". 






We have had a long list of fuzzy, furry, finned or feathered creatures during our time together as husband and wife. None yet have gone the distance and we don't really know why...but for your amusement here is a list of their entrances and exits from our lives.

Lily has had pets all throughout her childhood and adult life. J.J was denied a childhood of puppies and kittens.

INSANITY DEFINITION: Repeating the same action over and over again and expecting a different result (keep this in mind for when we get a dog).


Fergus (Lily's choice): was our first pet as husband and wife. Not really a pet, so much as a canary who didn't sing. Fergus was a boy. And me being a big girl's blouse, felt that Fergus looked lonely. 
Lurch (J.J's choice): our second canary and who we were completely assured by the pet store owners was a male as well, (as we insisted that we did not want babies) joined the Bachelor Pad Cage.
Their meeting was amicable at first, Lurch tended to sing at times yet Fergus still remained silent. A few weeks went by when things started getting a little rough in the cage. J.J's bird was attacking my bird (little fucker). It was then that J.J noticed that the attacks weren't violent, the attacks were actually two birds having sex. 
We had homosexual birds, not that there is anything wrong with that - but the sex looked quite vicious. Furious at the pet store where Lurch was bought, I demanded my money back for selling me a female canary when I specifically asked for a male. The owner, looked at me dead pan, and asked " Who's on top?" I replied that Lurch was on top. "Then he's your male, and the other is your female".


Oh.
Ohhhhhhhhhhhhhhhhhh - Bloody Fergus!!!


Well time went on, the sex continued and the thing we didn't want to have happen - happened. Fergus was pregnant. Not only that, her little opening couldn't get rid of the egg and sadly she passed away from the effort. Lurch lasted another month or two and then he passed on as well.So much for the feathered variety - time to try out the finned area.


We started with Basil - the Siamese fighting fish. 


BASIL:- We did quite well with Basil for a time. In a bowl with some greenery. Fed him occasionally.


Having success with Basil we bought a small tank. Inside we place some lion-head goldfish and a koi. Well the lion-head goldfish didn't even last long enough for us to name them as it seemed that we had too powerful of a filter that pretty much blew them around the tank.
The Koi however, was tough, slightly insane and suicidal. The amount of times the koi jumped out of the tank was ridiculous. J.J once found him under the book shelf one afternoon covered in strands of my hair and dust.  After that leap, he didn't last long either.


Soon after, Basil's vase broke and while he was rescued, the trauma of it all did him in.


It was at this time we moved to Queensland from New South Wales. Both having enough of the fish and birds, we moved a step up and tried a cat.


Now to be fair our reasoning for having a cat was to be my surrogate child. We had been trying for a baby for about a two years at this stage and my mothering needs were spilling out all over the place. I needed something cute to love and since my fallopian tubes and ovaries were on strike at this point something furry had to step in.


Us, being us, insisted that the cat be black ( as we wanted an evil minion to go with our evil persona's). So, off to the RSPCA, where we rescued a male moggy which we named Nemesis. Nemi for short but this left us with the opportunity to get a second cat later on, to which we would call Arch - so putting two and two together, we would have an Arch-Nemesis living in the house with us. 
Nemi was an awesome cat, lasting over two years. And not long after we were finally pregnant with Arwyn. Once we moved from a rental property into our own first property, J.J felt that it was time to add to our family and to get our first dog. I insane with pregnancy hormones looked at Nemi and said " Yes, perhaps it is time to get him a friend". 

   Nemi with Arwyn.
          
Introducing "Hunting Seassen" (taken from the Asterix's comics). Hunting Seassen was the biggest, dopiest, GREAT DANE dog ever!!!! 
Seriously I don't know what I was thinking for allowing that giant into our home but J.J gave me the puppy dog eyes, and told me the story in which his parents denied him a puppy as a child and my heart just melted - I blame you both Mum & Dad in-law.
Well, Hunting Seassen and Nemi didn't get along - though more on the part of Nemi, the dog was quite happy to play with the cat but would often earn a swiped nose for his efforts.
In this time Hunting Seassen went from medium size dog to Elephant sized dog. And because J.J was working so much, it was up to me to take care of the dopey bugger. I tried, I really, really tried, however even at one year old Hunting Seassen could easily put his front paws on my shoulders while standing and I was 5 foot 11 in height. 

He kept knocking me over and I had had enough. And so he was taken to a farm to roam free - it was actually a farm with a new family.


Soon after we decided to start trying for a second child. Again my uterus said a "Fuck you!" and it was here that a second surrogate child was bought in the shape of a kitten. Given the name "Arch" the female kitten instantly had all our love - with the exception of Nemi who was bitter and twisted that a female kitten had been brought into HIS home.

We tried diligently to introduce the two, hoping Nemi would accept  Arch, but he didn't. He expressed his hatred for Arch by finding where I was sitting, and chose to pee on my beloved writing folder filled with all my childhood stories I had written, that happened to be placed right beside me on the piano stool at the time. J.J was very angry about this and put the cat outside. That was the last we ever saw of Nemi, as he never came back.
So we had Arch as our last remaining pet - and then J.J. got the cancer diagnosis, and looked at me with those big blue puppy dog eyes that he has, he may have even whimpered a little and said that there was a breeder of English Pointer dogs on the magic mile and so we got Havoc.

Havoc lived up to her name - she dug the backyard, she jumped the high fences; in her excitement to have company in the backyard she would jump all over me and despite trying every tactic I knew, she just always had me in tears in frustration. As J.J's cancer got worse and my workload increased with both a day and night job, I just couldn't care for her as much as what she deserved and so another family adopted her for us.

Arch herself had a good run...by our standards, but this time Arch who would often bring me her kills as trophies, left me a trophy that in turn bit back -  A brown snake....very poisonous in Australia, who just happened to live in our front /backyard.

At this point in time, I had had enough of pets. Until May of 2011 where J.J once again talked me into having pets. So as it stands, we have two female cats, rescued from the RSPCA, Dr. Seuss and Tinkerbell, bought from the same cage  who are just as therapeutic for Arwyn, J.J and I as what this blog is becoming... 


Though I could do without the black one eating my hair while I watch TV.

J.J.:


Lily pretty much got it right in this edition. Except I thought Lurch came first and he lasted with us until we were living in East Gosford. He died while the workmen were rendering the balustrade. 
Nemesis was bought for Lily as a substitute for us not having any luck in having kids. And we had some very good memories of him taking to Arwyn and could always be found asleep in her crib or in her dresser. Like all good cats he was aloof until he wanted affection and attention and would run and hide from company.


Huntingseassen - oh what a dog. Yes, I'll admit he was too much dog for Lily to look after as well as looking after Arwyn while I lived at work. He wasn't destructive, but was just so big, clumsy and stupid that he couldn't help but break things. Yes he would practically knock you over, but he was just excited to have a playmate. Despite his size, Arwyn had him under her thumb even at the age of one. She would come to the back door to his play area and say "Sit! Sit!" whilst waving her hand up and down, mimicking Lily and I, and he would in fact sit or lay down in front of her.


Havoc - I'll admit we rushed into Havoc. We didn't know quite how sick and tired I was going to get initially and we just couldn't look after the terror. 


I'll happily admit now to being a cat person and I think Lily admits to being one now as well. Cats look after themselves practically, leave you alone until they want attention, and most importantly groom themselves. Imagine, if you can, trying to get a Great Dane into a mobile dog wash. (Lily: We hired someone to wash the Great Dane, Arwyn would have been one at the time and while she and I watched with her in my arms, Arwyn would cackle with laughter at every failed attempt by the dog washer to get this horse into the back of her dog-washing unit).




The blog entry that follows is " The Ghost of Christmas Past".

Their first date occurred after their engagement.

(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 situation as we know it".




Lily: A love story can not end without a beginning, so here is our beginning.


The year 1998 I was 21 years old. I was working in a restaurant while all my friends were either finishing university or starting their brand new careers. I wasn't on a destructive path...but I wasn't a happy person either. Still very bitter towards my mother who had left my father years earlier, and trying to cope with my medical condition that continued to do damage to my soul - there were only two things that I had to look forward to.


1: Going out drinking and dancing with my girlfriends on the weekends.


2: Spending copious amounts of time in chat rooms; talking to random people about ancient history, philosophy, literature, poetry, movies, the supernatural etc . People who spoke "Lily" and who did not judge appearances. Popularity was based on how charming you could be at the fingertips on the keyboard.


I think I had been on the Internet for about three months when I discovered ICQ. A message program where you could start up a conversation and kill time talking about random things. All you had to do was put your "name", list the category group you wished to search for someone to talk to (Age 20 and up) and a little information about yourself; for me in this section I wrote the following:-


                   "Where true Love burns Desire is Love's pure flame;
                      It is the reflex of our earthly frame,
                     That takes its meaning from the nobler part,
                     And but translates the language of the heart". 

If anyone remembers ICQ and the way it was set up, you'll remember the message alert sound when a little yellow icon flashes in the bottom right hand corner of your computer screen. On October 12th, 1998 that little "uh-oh" sound changed J.J's and my life forever.


J.J at the time sent me a message asking who had written the quote to which I replied that it was Coleridge (thanks high school English teacher Mr Ponchard for introducing me to Coleridge's work). 


J.J. was generally surprised that this piece of literature was Coleridge's while I was surprised that he even knew who Coleridge was for at that stage all the random people who I had previously been messaged by were Men and bi-sexual women of all ages asking me for my "stats" or age / sex / location,  as if I would take part in a random one-night stranger hook up.


It wasn't a particular long conversation that we had, perhaps twenty-five minutes at most on a prehistoric dial-up modem. J.J mentioned being dumped by his girlfriend just recently, I mentioned that Australia did in fact get snow and had lots of creepy crawlies and sharks to end your life ( Yes, I will never work for Australian Tourism). I was amusing, he just got points for not asking me for cyber-sex and so a mutual friend request was sent.


We spoke on and off as our lives permitted for the next three years. 


We talked about everything usually at two key points of the day: anytime between 10am - 12pm (AET) or Midnight to 3am.  We discussed my family and friends, of me going to university as a "mature" aged student, what I did on the weekends, the movies and music we liked, his friends, the rock of sloth, stories of the loon, his bike messenger friends and his room mate. I expressed a dislike for the world of politics and he would come back with that he had been a Political major at university. We had so many opposites, yet so many similarities. 


Our need to crush each other in competition begun at this point as well with online canasta, followed by the online seedy world of euchre, spades, hearts & backgammon. Truly we were playing with our lives at this point ;) .


Once I finally became somewhat knowledgeable with computers, pictures were sent. Every photo he sent me, he looked completely different in them. And the shirts?? Oh my god the shirts of a thousand different colours and prints and then he would send a picture of himself in a suit and tie - at some point I did think it was someone playing a joke on me because of the differences between the photos. But it was all the same person and with thanks be to the Hawaiian shirts, especially the pink one, I gave J.J. the nickname of " The Colombian Drug-Lord".




PHOTOS JEFF SENT ME:

 

 




PHOTOS I SENT JEFF:

Now three years of conversation, you get to know someone quite well. And yes, the word "love" may have been mentioned by both parties but I could never really commit myself to feeling it for the concept of falling in love with someone you had never physically met was just unheard of - I mean what if he was shorter than me?? I always said I would never marry anyone shorter than me. :)



So we both decided to save for a trip, J.J being a better earner and saver of money than myself bought his plane tickets and flew over in November 2001. I insisted he was just coming here to see the country and we would have some fun and that would be it.  


Fun turned into an awkward first kiss - Sorry honey, it's what I remember most about our first kiss - I remember it so clearly, we were in the pool in the backyard, you looked at me, we kissed - and as we pulled apart, I say " Well...that was awkward." (I'm such a romantic).


Thank the powers that be that the second, third, fourth, fifth kisses were heart-stopping, butterfly filled moments I will treasure always.


It was never dating in the conventional sense. We just did stuff. He took a trip to Broken Hill (without me - I had no interest in Broken Hill, probably because of that outback, middle of no-where feeling with someone who could possibly be a serial killer). We took a trip to Canberra and both came down with the flu, him worse than me because he's a guy and man-flu is ten times worse than normal flu. 


By February 14th, 2002, we had made it to Australia's Wonderland (amusement park). It was while on the Zodiac ride in which we were talking with J.J saying " I've never been to an amusement park with a girlfriend before.." 


Ah.... okay.... so I guess now I finally have a classification from him (from my personal diary).


On the 24th April, 2002, Jeff proposed to me in the hospital I was staying in (three day experimental treatment for my bone disease). Out of a silver candy wrapper and surgical tape, he fashioned an engagement ring and simply asked and I said yes without hesitation.


It was then that we both kinda realised that we really hadn't been out on an official date. Therefore, at the Teppanyaki Bar at West Gosford we had our first official "date".




Side note: Our story for me will never officially end - because as J.J. knows our love is for this life and the next..... and so says our legally binding marriage vows :)


J.J:


It was 1998, I had been seeing a girl named Ange. Then the worst day of my life up until that point happened. I got a phone call from a trustee in bankruptcy that someone I had been doing contract work for had filed for protection. I was out some $10,000. Then I went outside to get the post and I get a letter telling me that my student loans have consolidated and the bank would kindly like payment now thank you. 


Crap. It wasn't even 9 am and I'm broke.


Around half an hour later, I run into Ange on her way into work. I ask her if she wants to go for a drink after work, explaining its been a rough day and I'm going to need one. Ange politely declined explaining that she was "Kinda, sorta seeing someone else", and that she had already promised to go  out with him that night but she was free tomorrow night. 


I think that's called hitting the trifecta.


Somehow, I managed to make it through the day without getting hit by a car - I had trouble doing that on most normal days. When, I showed up for work at the Loon, I explained my day to the others in the kitchen and they agreed to send me home as soon as the dinner rush was over. 
Mercifully, it was an easy and early night. I went home and in a state of apathy began just reading random profiles on ICQ, I fired off a response to one saying "Coleridge, right?" and never expected a response or actually cared if I got one. 


The rest they say is history. 


In a cruel irony it was Ange that had installed ICQ on my computer in the first place.
This set off a three year conversation, that went from when I would stumble home from one job and for a few brief moments before I would get my first call in the mornings for my other job. The chats were longer on the weekends until Tim or others would be knocking on the door for  breakfast at the Oak. I've apologised before for how many times I fell asleep while talking to Lily, and I apologise again for all those wasted " zxxhdhjwekjfhf" that always graced her screen once my head hit the keyboard in slumber.


Finally, the day arrived. I landed in Australia on Nov. 14 2001. After many delays, Lily and I laid eyes on each other. I cringed at how tall she was and I know she cringed at how much of a short arse I am.


As Lily just explained, we had our trials and tribulations. 


When I decided to propose to Lily, I had announced to the boys at work the night before what I was going to do. There was much cajoling and ridiculing from those that were already married and calls of "idiot" from the bachelors. Only Ducky supported me through out it. The next day I arrived at the hospital with a foil fish balloon and snuck out during the visit to get some flowers. I proposed on bended knee with a foil ring made from a mentos wrapper. 

She said yes, laughed and the three other ladies in the ward clapped and laughed. Soon, word had spread throughout the entire hospital, depriving Lily of being able to surprise her friend that worked there of the happy event.


Two days later, back at her dad's place we were told to find our own place, which we did. Quite literally right around the corner. It was then Lily pointed out that we had never been on a proper date. So, not only were we engaged, we were living with each other without ever having had a date. 


I must be a catch.


I'll never be able to test the theory of me being a catch as Lily pointed out, our vows state that we are: 'bound to each other in this life and the next. Where we meet, remember and love again."




The blog entry that follows is "Fuzzy, furry, finned & feathered friends".

The Situation as we know it.

(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 Reason".

(Viewer advised - photos of tumour included)


Lily: This is probably the part of a novel that you want to skip. It's the chapter at the beginning that explains things, sets the mood, the necessary background information that is almost yawn worthy. However, it is necessary...especially for those of you who may came across this blog and not have a clue as to why Death is being featured in our lives so predominately. So bare with me, and I'll try and make this as quick as possible.

In the beginning...I was the member of our little family who had the medical condition that needed treatment and constant monitoring. Periodically having operations to correct deformity of the facial bones and taking morphine on a nightly basis just to be able to sleep painlessly. My disease was something I was born with, something that had started playing havoc with my life at the age of 11, becoming worse during high school (the very worse time for it to make me stand out for all the wrong reasons).

Besides breasts on a female the next place men would often look at would be your face - and while my breasts were and still are quite spectacular, my face went through dramatic changes. At times I would be pretty, once or twice beautiful but for the most part not exactly who the boys paid attention to. During my early twenties before I met Jeff I had a brief, shiny period of gorgeousness (the time of the black dress photo) yet forever the wounds of my childhood will I carry, in which my looks will always be something I devalue - the wounds are deeply ingrained upon my soul.

Now I mention this for the following reason. When J.J and I were married, a person at the wedding asked J.J if he was sure he wanted to marry me with all my medical dramas. My lovely husband replied " Of course!" (Bless your cotton socks my love).

Sidebar: J.J and I are extremely competitive with one and other. We make wagers (not money, usually things like "If I win, you have to do the dishes" etc) , play games using trash talk banter which will result in me giving J.J. the bird or alternatively responding with the effervescent lady-like "Fuck you, mother-fucker!"

Sidebar Two: Yes ladies and gentleman I swear like a fucking sailor reserving the "C" word for when I am utterly beyond anger....so a great deal of "fucks" will be coming your way.

As I was saying I was the medical freak of this family and J.J the healthy one. In fact for seven and a half years he was the healthy one - yet.... , I'm the healthy one now " take that biatch" :)

If only it wasn't the case... :(


J.J: You see it all started with a birthmark and a rash, neither of which located on my person. Our daughter Arwyn (yes we know her Welsh name is spelt as the male variant - you need to speak to Lily about that), was born with a large coffee stained circle on her back and six to eight months into her little new life eczema started to plague her skin. For the next two years Lil and I took her to the local doctors for various creams to abate the scratching that took place daily. Lily trimmed our little girl's nails weekly trying to keep the self-inflicted damage to a minimum.

To no avail...

Finally we were sent to a specialist, a Dermatologist in the city. He looked her over, noted the eczema, noted the multiple cafe au lait marks which now seemed to mark her skin as a dot-to-dot drawing, she now refers to them as her Scooby-doo spots. He asked to see Lil's skin and then mine - which were covered in small lumps that some of you will know that I have had for the longest time.

I have never thought anything of these lumps. Perhaps put it down to a side-effect of my Scoliosis but before any more thoughts could be given to my own lumps (not lovely lady lumps - thanks Fergie) the specialist said:

" Your daughter has two out of seven key indicators for a disease called Neurofibromatosis. You need a clinic diagnosis however so I'll refer you to a Geneticist out of the Royal Children's hospital - but all points point to Neurofibromatosis (NF). For now here is a steroid cream for Arwyn's eczema. Good Luck."

Happy we now had a cream that seemed to alleviate her itchiness we waited for the Geneticist appointment.

From memory it was roughly two to three months later. The Geneticist took a family history from both Lily and I. She looked at Arwyn, looked at Lily and then looked at me. As soon as she saw my lumps (Damn you Fergie - that song will forever ruin the word lumps) which we now call "fibromas" she said,
"Yes, definitely Neurofibromatosis, Type One". It's a genetic disorder that is usually passed down from parent to child or can be a spontaneous mutation and can occur without being inherited".

Lily asked " Well, what does this mean then?"

"Well, Neurofibromatosis is a genetic condition. It is due to a mutation or change in the gene called neurofibromin. It is a very large gene and because of this it is very difficult to test and we tend to make the diagnosis clinically. It is not an uncommon condition - about 1 in 3000. The condition can be variable. There are a number of health issues that it is important to be aware of in NF1. The name refers to the neurofibromas which are a feature of the condition. Because of the potential for the optic nerves to have these thickenings around them it is important that Arwyn is reviewed by an ophthalmologist. These types of tumours are generally only present until the age of six and are extremely rare after that. Certainly most other neurofibromas tend to develop later on, in late childhood rather than at her age. In Jeff's case this has not led to any particular problems. They do have potential risk of malignancy but as with anything, if they become hot, inflamed or suddenly painful it would be important to seek medical attention straight away".

The Geneticist, explained a few more details with regard to Arwyn and then sent us on our merry way with referrals for ophthalmologists, paediatricians, scans and letters to our local GP all concerning Arwyn - which at the time because my case had been so mild, I didn't even know I had NF1 until the age of 36, Arwyn was all that mattered.

Well, all of that changed in 2010. I had started working out at the gym again and after a few weeks noticed a small strain in my forearm. I wouldn't have even called it a lump. Being a typical boy - I ignored it. It got bigger, finally when it was the size of a pea I went and saw my GP. He felt that it was likely an intra-muscular hematoma, we had an ultrasound done and thought nothing more of it.

It got bigger.

After another few weeks I went to a different GP - she ordered a CT scan immediately and followed it up with a referral to a specialist. Within a week we were told it was cancer. I laughed, Lily had a bit of a cry.She promptly had a go at me for "Great, you bastard you'll do anything to go and beat me at losing weight won't you."

(Lily: Yes I said it, I have inappropriate humour :) - also at this point I'm pissed at the first doctor for misdiagnosing the lump)

J.J: We immediately got down to the business of curing it.

That meant, talking to surgeons, radiation therapy and Chemotherapy.

Problem was, it had been misdiagnosed again. It was originally identified as Rhabdomyosarcoma, which is bad but not dreadful as it responds exceedingly well to chemo.
Mine didn't, in fact just like Audrey in Little Shop of Horrors it was " Yummmm feed me more Seymour!" BIGGER!




From beginning growth, through to radiation treatment and finally the aftermath of surgery with radiation burn.

 

 

 

 


Chemo was cancelled and I was left waiting for radiation... waiting...waiting. You think when it comes to cancer that time is of the essence.

Two months go by while we wait for an available spot on the radiation roster. And finally, December 2010 radiation begins. Five nights a week Lily would drive us fifty minutes into the city after her work day to get treated by radiation. Lily & Arwyn would sit in the waiting room, usually Lil would feed Arwyn or play with her or try to stay awake by raiding the vending machines for all the available coca-cola possible while a beam was boring into my forearm.

Radiation sucks. The tumour got huge! It was even named (By Louie) as Sputnik. Eventually, the tumour begun to slowly, very slowly break down and ooze. The full extent of this ooze just isn't done justice. It constantly wept and the odour coming from it was at times quite unbearable.

Radiation finished on New Year's Eve.

February 2011 - Time for surgery, which went fantastic. Clear margins, full use of my hand, although a bit weaker. We were so happy.

During a routine wound review, the chest x-ray showed "areas that are cause for concern in the lungs."

Crap!

It was the surgical team that broke the news to me about the spread. Effectively telling me to get my affairs in order. I was left wondering if I was even going to leave the hospital that day. That was just after Easter 2011. The oncology team started chemo again. A different type this time and each course shrunk the tumours, which was fantastic. We thought we were on top of it, that a truce had been made between the cancer and my body. Soon I was going to go back to work.

But a tingling started in my fingers...
                                               and then there was a lump up around my head. I didn't tell Lily about it, and I do not know why. When I did tell her, it resulted in her looking at me as a teacher looks at a child who knows they are in the wrong. After being badgered by her within an hour she was on the phone to the local G.P who fit us in straight away. She saw the swelling around my temple and by that afternoon, a cat scan and ultrasound was performed late on Friday afternoon. A phone call from the G.P surgery came through saying that the doctor wanted to see me Monday morning.

Shit! Shit! Shit! Shit ( Lily: Fuck! Fuck! Fuck!)

Over the weekend I had developed a fever, vomiting and abdominal pains, on top of everything I had a virus going around. Monday morning at the doctor surgery I am laying down in the doctor office, ready to vomit at any minute. Arwyn claims that she too is sick and then proceeds to vomit into my bag. Lily is just standing helpless in the room, watching me on the bed, dealing with Arwyn's vomit and knowing what the outcome of the scans is going to be. After a shot of maxilon the doctor said that the news wasn't good and that the cancer had spread to the bone of my skull and was pressing against the brain.

After another week, we waited for the specialist appointment that I had lined up and was told that the cancer was incurable and we would now be treating for quality and quantity of Life. So where do we go from here?

We wake up every morning, give each other kisses, hugs and celebrate the simple things that life gives us everyday in the company of those we love.


Blog entry that follows is "Their First date occurred after their engagement".

The reason (READ FIRST).

The Reason:

For those who know us, you know that our names are not Lily & J.J. These were our user names we used on ICQ (an instant message computer program from the late 90's), for the way in which we met & fell in love was across the void of the Internet - Lily from a coastal town roughly an hour from Sydney, Australia; J.J from his hovel in the nation's capital of Canada.

We started our story on the Internet, & while not in our hearts will we ever feel "finished", we'll finish our story on the Internet.

Lily: Well, yet another blog to add to the thousands that already live in the Internet. This one, for me will be therapeutic in its purpose. A way to share, a way to vent - for you see my husband is dying, for that matter aren't we all? Yet he, is a little closer to Death's dinner party than most.

I want to share what we are going through ... when we posted our situation to our Facebook statuses, so many of our friends and family did not know what to say; so here our story will sit without the pressurised need for people to comment. Comment if you will, if you need, we always value input - but just remember, this is our story and if we make grammatical errors, punctuation faux pas, do not get your knickers in a twist, for J.J is dying & when you're dying you can get away with anything (and as his wife I get special allowances for my errors). 

J.J: This is one of those rare opportunities. How often do you know that your end is going to come in the foreseeable future? With Lily I'll get to live and share all of the various thoughts, emotions and flotsam that is going to float to the surface of my mind. That is while I still have one. So please come along read, laugh, cry, cringe and share as Lil and I create something from the terrible circumstances that have befallen us. Something that Lil and Arwyn will be able to look back on and share in the years and decades to come. 

The blog entry to follow is " The Situation as we know it".