Friday, December 30, 2005

5. Silly Season

A couple more weeks now and the doctors say I will be in what's called 'haemotological remission'. Basically, my blood levels will have gone back to normal and would appear ok when a test has been taken. Funny how it can just be hidden like that and I will still know a potential killer is waiting to be let loose. My white blood levels have been fine after the first 3 weeks on Gleevec and have been fine ever since so the docs are now giving me 3 weeks off until I come back and see him...not until 2006! Great news...

November and December have been pretty much happening in the silly season. Kas's birthday has finally arrived after year/months/days of talking about it. Was really good to see her so happy and temporarily keep her mind off me. I had organised tickets for the two of us to go to Rome before CML was around so I wasn't going to let that stop me. My Christmas party was in London and for me to get to Rome, I had to fly back to Scotland first...with my lack of London traffic knowledge it all nearly didn't happen with me arriving to a 9:50am flight at 9:55am. More worried about getting my man bits chopped off for missing our holiday! Anyway, the flight was ok and landed in Scottish snow, repacked and headed to Prestwick en route to Italy...wasn't until we got there and about to board that I realised (actually I was reminded) that I had forgotten my medication! Now I was going to lose my man bits...

After Kas having a few well deserved double gins, I slowly managed to claw my way out of the dog house. And we thought this weekend was going to be hospital free... The next morning I thought was going to be a crazy one, I wandered up to the end of the road to a chemist opposite the Spanish Steps. With luck not on my side lately, the lady behind the counter went to the back room and came back out holding the medication I required. There's going to be a catch I thought seeing I don't have a prescription and I also hadn't shaved, leaving me with a dodgy porno moustache...40 euros was the response. Woohoo! She handed me the drugs and the next minute I was back in the hotel room with the biggest grin on my face... bring on Rome!!

December was just as mad with parties, work, playstation etc... but the best news was being invited to join a Clinical Research Study at the Royal Infirmary. The professor in charge is among the world's best and the study I will be on is for me to have a mini-allo transplant after 6 months of Gleevec use. The meeting went well with my dad, Kas and I. There were a few terms she used and some explanations that went over my head but the key thing to happen was to determine if they can A. find me a suitable matched donor and B. how well my biological response is to Gleevec. Mid-January 2006 will hopefully tell me more with both sets of results expected then...

Christmas eve came around so fast. I hate always hearing 'wow, time really flies' and 'I can't beleive it's already been a year since Christmas!'...but truth was, I couldn't. Obviously time is always the same, it just seems faster because of how much busier you actually are. Since October 19th, my head has been pounding with an overload of information. I believe that when you hear you have something wrong with you, ie cancer, you have to arm yourself with all the info you can handle to find out what is best to combat it. Simple...information + self belief + courage = survival. I find my self listening and reading other people's stories alot and the only part I ignore I anyone else's negative experiences. Everyone else's experience and perspective will be different from the next...

Christmas was harder than most for obvious reasons - I was spending it over 10,000 miles away from my family and friends from Oz. I know my family want to be near me and I also want to show them I'm going well and still looking as muscular as Arnie (more like Arnold from Different Strokes). It's just good for me and my family to have Kas's folks here. They give me an endless supply of support...and food! Was really great to spend a cold Scottish Christmas with Smith Family...hopefully the Sinclair and Smith clans will get together for a joint Christmas party next year.

New Years eve tomorrow - can't believe it's been a year since New Years eve! 2006...holy shit!I wonder what's in store for the year to come...

Friday, December 23, 2005

4. Old Man

Work for me was an important step to conquer leukaemia and continue getting on with my life. It was great to get out in my car and have a whole day to myself. I enjoy working in the wine and spirits industry, still can't believe I can't drink anything! Good for my liver I guess, give it a rest.....

Sometimes I'd just think all day about the year and years ahead, how this affects Kas, how it affects my family and friends in Scotland and in Australia. I was still coping quite well regarding the new situation I was in. That Sunday night we had a normal Sunday dinner at the 'in laws', I felt that everything went ok but when we got home Karen asked if I was ok. She also said that her mum thought that I looked liked I needed my family with me.

Back at work the next, staying in the local area and thinking about what Kas said to me last night. I really did rely on my family and so far they had been great. I hadn't heard from a few people that I really thought I would and I think that this was what was on my mind. Kas called and we were talking about the weather or how much I look like Brad Pitt or something along those lines and there was a knock at the door at home. The security button obviously hadn't been touched so she reluctant to open the door. After a few times of Kas saying "who is it?", over the phone I heard her open the was a the mobile phone hitting the wooden floor and a gurgling scream from my receiver. Holy shit...she's been killed! I stayed listening and a man got on the phone..."hello!". Who the hell is this? "Hello Matty, it's your father!". Holy shit again! My car handled my steering quite well as I swung a fairly illegal u-turn and sped off towards home. My phone rang again and it was my mum from back in Oz. My old man had never left the shores of home since he was 5 and now he had come from Broken Hill all the way to Glasgow. Mum promised me it was just my dad and he just wanted to see his mate.

Great to see my old man. He looked well, even after 24 hours on a plane. It was the boost that I needed and he was the chauffeur I needed as the anemia was taking effect on my body and the driving was taking it's toll. I think he thought I'd be in bed and he'd spend the next few weeks watching me play playstation (sort of true - world number 1 Tiger Woods Golf player) but nearly fell off his chair when I came in the room that night dressed in my sports gear and ready for 5-a-side soccer match. That was the way, I refused to let CML slow me down and stop me from getting on with 'normal' life. I know it's very hard to describe normal...not even sure if it exists as everyone is always striving for it...but normal for me was still seeing my friends, playing sport and working. I realise that I have to slow down slightly until my blood levels all come back to 'normal' but this is the way I want to do this.

The next week, November 22nd, I was in the spare room doing some weights and trying to stay fit. My dad came in the room followed by Karen, both looking very serious and concerned. Dad announced that my brother and sister had found out they weren't a bone marrow match for me and they could not be a donor. The news was shit but almost what I had expected. Not because I wasn't optimistic, but because there was only a 1 in 4 chance that Nick would be match and 1 in 4 chance that Tash would be a match. I felt bad for my dad because that was partly the reason he had come over but I also felt bad for Nick and Tash. They had been given some pretty awful news about me and then handed a heap of pressure to be a match for me.

Next step now is to start looking on the UK and world database for a potential bone marrow donor. It's all being handled here in Glasgow so I will be informed on the progress...

3. The Boys

...weekend has now passed and the thought of this disease inside of me had slowly started to sink in. Some people may say that I took a 'bravado' stance with CML and was trying to fool people into thinking I was ok. The reality is, I really was and still am very confident that I will get through this and make a full recovery. No bravado, just 100% confident and 100% ready to back myself.

Again, the morning was filled with chatting to my concerned friends and family in Australia and reassuring them that I am in great hands. I really didn't know too much about about CML yet but yesterday I had read a book in one day for the first time in my life. Lance Armstrong, world champ cyclist, cancer survivor and author...such a great book, very inspiring read. The man had an extremely grim prognosis and still managed to power through over many months and overcome his three seperate cancers. One thing we have in common...full belief that the mind can get you through anything and you have to remain positive throughout. Mind over matter!

Reality is that I do have a reasonable prognosis. With the new drug, I was about to get prescribed, on the market called Gleevec, the chances of survival are dramatically increased. The only thing that really scared me at this point was the talk of a 'bone marrow transplant' and the fact that I may not be able to have kids after a few doses of radiotherapy. What the hell does this all mean?

...I want to be honest in my diary, so the following day's story I had to throw my dignity out the window. With the new threat of sterility, Kas and I had a quick trip to the Sperm Ward at the Glasgow Hospital. I really thought that there maybe a scientific or medical way to produce and sample to put the 'boys' on After a few talks with doctors, they told me what they expected (pretty obvious) and I felt a little under pressure to perform. The door had about 3 locks.. the room was a dark, windowless, space with a toilet, sink and a dodgy looking reclining chair covered in a white, tissue paper. There was a 'porn folder' in the back of the dingy room filled with even more dodgy reader's wives, a hot wheel car magazine!! and a comic strip!?! Anyway.....

Outside the room on my departure from the 'love lounge' Karen was sitting waiting patiently...she was slightly blushing and had a little smirk looking up at me. We had a giggle as I walked down the corridor with my small tub. I think I started blushing as I handed the 'boys' over to a nurse who grabbed it out of my hands (no gloves). That was it, she said 'thanks for coming' and Kas and I walked off laughing.

It all started to settle down by the end of the week. I had what was going to be my weekly Wednesday trip to the doctor, started the wonder drug Gleevec and continued to speak with friends and family about what was happening. I find it important to update everyone on how things were going. Then the next thing struck me, I am getting married in August 2006 and with a potential BMT on our hands, it could take months and months to get over and you never know when 'it' or another potential related disease could strike. In the meantime, the move to get my brother and sister tested back in Australia to test their tissue type and be a potential donor for me had begun... Their bone marrow would be the best for my body to handle and would be it was an almost certainty to have a BMT in 6 months from diagnosis. Let the games begin!

Wednesday, November 23, 2005

1. First Post

Seems very non me to be starting to write a diary. Started writing one when I was 12, mainly about the girls in my class and a few private details until my older brother got hold of it. Can't really remember what happened next...probably gave me a little brother knuckle or teased me until I got upset. Didn't usually get upset but when you have a brother who went through puberty at age 10 and was a giant, the only option was to either stay and fight or run to the safe area around mum or dad.

I'm here writing now because my old man and a few people said it would be good to look back at one day. The other reason is the fact that on 19th October 2005 I was first diagnosed with Chronic Myeloid Leukaemia. It's much easier to write the words than to say it, not because it upsets me but because I don't feel like I have anything wrong with me. The docs say I would have had it for about 1 year and I was very lucky in which the way it was found. At 27 years old, although I'm starting to "ripen", I still feel fit enough to play rugby and do most things I have over the past 10 years. It was about 8 weeks ago when I was in fact playing rugby in Scotland and had a pretty hard game. We weren't too far into the game when I went in for tackle, the other bloke on the opposition team came in with a swinging arm and his fist mashed the side of my face, I could feel something crack and next minute I was laying on the dirt and the game continued. After a few sips of water and a few words of wisdom from the coach I was back on there again with my head feeling like a squashed melon and ears ringing. Maybe 10 minutes later I had a 17 stone guy on the opposition trample on my calf muscle with studded rugby boots. That was the time I thought I was over the hill and ready to hang the boots up...also a fair bit of persuasion from my fiance, her mum and my mum.

Next morning I woke up to a face that made the Elephant Man look handsome (not my fiance, I was looking in the mirror). My eye was black and my face was swollen as too my calf muscle. Two things went through my head : whats Karen going to think and whats another sport I can take up. I waited a couple of weeks and with my calf muscle still swollen, my face still swollen bruising when I have very rarely bruised in all my life, I decided to drag my old body to the doctor and get it checked out. It was explained to me that it's most likely a deep bruise and it's just taking a while to heal. The other thing done and the end of the consultation was to take a blood test...

A few days later a Private Number appeared on my mobile must be a drunk mate from back in Australia. I answered the phone to speak to Dr McKlintoch who, quite frantically, told me to come into Glasgow's Western Infirmary to speak with her regarding a "high white blood cell count". I understood that a high white cell count was due to infection, therefore I knew that the puffy calf muscle needed some antibiotics.

I was told to take my shirt off and losen my trousers...I guess she's only human! I was thinking it was odd to do this examination for a leg injury. After a quick chat about healthy siblings, etc, the words that next came out will haunt me and stay with me forever.."we are quite sure you have Chronic Myeloid Leukaemia". In with a sore leg and out with cancer...all in a days work.

2. Reactions

The first reaction when you're told you have unwelcome cancer living in your body.... fear overcame any other reaction. I had been playing a fair bit of sport lately so I felt quite fit, so the thought of having a disease that 'only old people got' was a bit distressing. Thought I'd deny I had anything wrong but instead I could only condure up images of what I thought leukaemia looked like. And when you ask the doctor how long you have to live and waiting for the answer is situation I never want to ever go through again...

I never knew that leukaemia was a cancer. I never knew that Oncology meant cancer. I never knew that a 'normal' person had a 'normal' white blood cell count of between 5 and 9 and 166 wasn't considered 'normal'. If you had asked me what a donor lymphocyte infusion was 24 hours earlier I would have stared back crossed eyed and told you that it was a drunken snack you eat on the way home from the pub.

The fact is, everything in my life changed in one instant. Luckily Karen's job was in Clinical Research and had an unbelievable knowledge on anything to do with medicine, so apart from the comfort I felt from having her around, she could also understand what the doctor was saying and catch the bits that went in one of my ears and out the other. I learnt mostly about CML (Chronic Myeloid Leukaemia) from when Karen was on the phone and chatting to friends or family...I'd turn down the telly and listen to what it all meant and I could piece together bits of info I'd picked up along the way.

My initiation into the cancer community was a quick introduction to the needle. We'd met a few times before in the past and never got on too well. Over the next few weeks we were to get to know each other very well.
What followed was a series of confirmation blood tests, the next day I was in another hospital hooked up to a cell seperator machine. Simple explanation : one tube leaving one arm and passing through the cell seperator, collecting a lot of immature stem cells and then passing the blood back into my other arm. The 3 hours hooked up to the machine wasn't the worst part, it was hanging out in an oncology ward that I felt I didn't belong in and hanging out with guys with no hair. I don't have much hair myself but this kind was the kind that had left the body due to the harsh treatment of chemotherapy. Again, I know it is life saving treatment and these guys were extremely brave but I didn't feel I belonged there.

The next day was the day I had heard others talk about. The bone marrow biopsy... Large, large needle, into hip bone, remove sample of bone marrow, lots of pushing and jabbing...that'll sum up the experience.

The next day was Saturday was a very welcome hospital appointments! I had a nice sleep until the phone started ringing from worried friends and family. I really did like talking about and to people as I wanted to reassure them was I was ok and still looked the same...although most people had the same image in their head as I did when I found out. Kas had left for a hair appointment, so 2 minutes later I went down to give my receeding bouffant a trim at the barbers. My heart completely sank as I heard an almighty smash and the grinding of metal on metal and a car engine been revved in neutral. My head said that Kas was a few minutes up the road in the car but my heart made me sprint into action. The path was a bit slippery so I must have looked like bambi on ice to anyone watching... Out the front was a car that had driven into a bend in the road and not turned. The noise I had heard was his car smashing into a parked car. All I could see in the car was a man slouched over the wheel and the airbag that had gone off! One guy was there before me and LUCKILY was a doctor, the other was a quite small lady that wanted to help. The man doctor looked around and announced to me (untrained and shitting myself) that the man wasn't breathing and had no pulse! I shat even more when he then said 'hey you, come and help me get him out of the car'...holy shit!
2 days after finding out about my illness and genuinely believing that I am the unluckiest man in the world, I found myself at a huge car accident pulling an old man out of the front seat, carrying him and placing him on a blanket on the footpath littered with broken glass and debris.

The man doctor said he probably had a heart attack before the crash...the next morning we looked down from the flat and saw a bunch of red roses on the telegraph pole. As horrible as that was for the old fella and his family, it put things into perspective for me. I have a prognosis that is quite promising and in the care of some of the worlds best. Wouldn't now say I am the unluckiest man in the world... I've already been taught so much from what I'm dealing with and I'm very sure I'll learn alot more over the course of my treatment.