Stupid things we agree to after some drinks

Friday 15th December was our work Christmas Party, since I am now back in Australia I was luckily invited to the Australia Christmas party. 

This year we had lunch and drinks at a function room next to work. It was a quite bit different to my Christmas party last year which involved us having lunch at the Straits Kitchen at the Grand Hyatt Singapore. Side note... anyone visiting Singapore and wanting to try a buffet full of local food go to Straits Kitchen. It will cost you a bit more than eating locally but a good way to try lots of different local foods. 

After our lunch a group of us decided that we were going to extend the christmas party at a pub not too far away. We chose Caulfield thinking there would be plenty of good bars around since it's close to a university. We apparently were wrong, nothing apart from 2 bars with a sports bar and pokie area. 

So we chose 1 place and had a few drinks. During the night we quizzed one of my colleagues on when he was going to run a 1km he had bet he could run about 6 months ago. Apparently whilst I was off sick this colleague believed he could run 1km in 3 minutes which later got changed to 4 minutes... for any of my U.S friends 1 kilometer is about .62 miles. 

Out of nowhere, four of us had suddenly agreed to run a kilometer each with the goal of getting under 20 minutes for the 4 kilometers...... for those who are not Albert Einstein this means each of us needed 5 minute kilometers....... Damn you beer!!!!!

To put it in perspective, my quickest run after months of training was a 5km in 23:30. This is pretty much 4 min 40 seconds kilometers and after minimal training we were proposing 4 of us run under 5 minute kilometers. So the date was set, Tuesday 18th December would be the day we tested our limits. 

Come Tuesday it was a fantastic weather wise with about 25 degrees and sunny. We had chosen a track near work which was a proper athletics track (400 meter ring with a spongy ground). Each of us were required to do 2.5 laps which was the total of 1km. 

After working out the racing order we were ready to start, I luckily was running as the 3rd runner. Being the fitness fanatics we were we obviously did a warmup and a stretch of about 30 seconds...... who knew this wasn't long enough. We had luckily recruited some colleagues who had kindly decided to be our timekeepers for the run. After a countdown our first runner was off as quick as a teenage boy on his prom night. 

After the first 400 meters he was tracking fantastically at 1:30. If he kept this up we were looking at a 3:45 kilometer. We all expected our first runner to die off because all morning we had all discussed how we couldn't do a kilometer under 5 minutes. To our surprise the first runner came in at roughly 3:50. Suddenly our second runner was off.

After 600 meters our second runner was look great as well. His time was just over 3 minutes with only 400 meters to complete..... but our lack of warmup and stretching was soon about to bite us. With only 300 meters left in his lap our 2nd runner came to the ground in pain with a Hammy (Hamstring Injury). Suddenly visions of how we were going to explain this to our EHS officer came up in our minds, luckily our final runner was running alongside our 2nd runner so he took over the last 300 meters. 

The second leg ended up with a time of 4:07..... damn they are quick. Finally it was my time to prove that the tortoise doesn't always finish first. I took off and my first 100 meters felt great, I was flying along. I turned the corner and suddenly God decided he hates me and I realised there was a head wind stronger than Cyclone Tracey I had to content with (granted I may be exaggerating the wind). After the first lap I had clocked 1:45 which was obviously slower than my mates but still pretty good for me. 

The next lap was pretty brutal, my heart rate hadn't been this high since I had watched the Victoria Secret fashion show. Man I was struggling for every single breath I took, at the 800 meter mark I was at 3:40 with 200 meters left. 

200 meters left, I have always been a big believer in always finishing strong in any form of sport. If you are running always (in training and races) sprint the last part. We also always trained that way in dragon boat racing (Ready for Charge?....... READY!). 

So with 200 meters left I gave it all I had, I turned that corner and tackled Cyclone Tracey head first. In my mind I felt like I was re-enacting a Warner Bros. cartoon where the character runs on the spot for a long time before blasting off. I was pushing as hard as I could and felt like I was going nowhere, but persistence paid off and I finished with a time of 4:35. 

Our last runner was off after I tagged him and mind you our last runner was our fittest person. True to form he didn't disappoint us either, finishing with a total time of 3:35 for the 1km. 

That was it we were finished, after a quick calculation we had achieved our 4km in a total time of 16:07!!!! VICTORY, we spent the rest of the day feeling like champions and basking in our own glory.  There are definitely worse ways to spend a lunch break on a Tuesday. 

I have to give thanks to my fellow runners for organising this and our amazing support crew and time keepers. I have always believed that within my work there are 3 main factors I look for, they are:

1. Remuneration

2. Learning

3. Fun / Enjoyment

If in any job I have at least 2 of those items then I am more likely to stay in that current job. I'm glad that the office I am currently working in fills point number 3 and keeps the place enjoyable. 

Run the whole 5km???? You're dreaming

Thursday the 25th October was the day Melissa posted a message to me on Facebook saying we should do a 5km fun run called the "Color Run" (I know Color should be spelt Colour but it's an American event). A Colour run means you run around a 5km course and roughly at every 1km mark a different colour is thrown on you. After the 5km you are covered with 4 different colours.

This event sounded like so much fun, but back in October I had managed a to walk 5km in 50 minutes. Not really the speed demon that I figured I needed to be to complete a fun run. But after wasting too much of this year and feeling I needed something to motivate me I signed up. 

The first step was to register a team name.... well one night I was bored whilst waiting for a midnight meeting. So as you do at that time of the night I came up with some ripper suggestions including:

1. Skittles

2. Double rainbow (OMG it's a double rainbow.... WOOOOO)
3. Colour Blind
4. "You had me at Yellow"
5. Dye Hard (or Dye hards)6. I see dyed people
7. The Walking Dyed
8. Princess's Dyed (Didn't really work cause I was in the team)

Mel decided to choose Colour Blind which in the end worked really well. In theory a team consisted of 4 people and you all paid $5 less if you registered as a team. Unfortunately we couldn't get a team of 4 people and our team only consisted of 3 people. Luckily we believe Colour Blind would be a common team name so we got away entering the event with only 3 people. 

After that night quite a few weeks of training happened. I installed an app on my Samsung Galaxy Nexus (Android Phone) called Endomondo and I started tracking all my walks and runs. Since the race wasn't going to be timed I decided that my goal before the race was to run 5km in under 35 minutes. After a few weeks of training I reached that goal on Melbourne Cup day (Tuesday 6th November) by clocking 6.08km in 41m14s. That was helped by the lightning storm that was approaching whilst I was running.... don't they say "If you can out run a lightning storm you can outrun anything"?..... Ahhhh no sorry that was a dodge ball. 

Sunday 25th November finally approached and the weather forecast wasn't great. It was going to be low 20's (degrees not farenheit) with a slight chance of rain. But cold weather wasn't going to get us down so after meeting at Mel's at 7:45 Gemma, Mel and I were on our way. 

We got to Flemington racecourse after finding a pretty convenient carpark (thank you Tom) and walked to the back of the queue for the people waiting at the starting line. That queue was massive, we literally had to walk nearly a kilometer to reach the back of the line. The line then slowly inched forward as different waves of people were let free to run. 

After lining up for over 30 minutes we finally reached the starting line. At the starting line music was playing and a guy was throwing free stuff into the crowd (Who loves free stuff?). It was a great atmosphere with everyone dancing and signing, either pumped for the start of the run or pumped for free stuff. 

After a countdown of 10, 9.............. literally the guy only counted to 9 and stopped, we were off and running. After 200 meters I was wondering what the hell I was doing. I was a bit out of breathe and all I was thinking was 6 months ago I couldn't walk. I shouldn't be running yet, this is crazy. 

But thankfully I had Gemma and Melissa there with me. Not really for moral support but mainly because I felt I couldn't be shown up by girls. So I pushed through the pain, just like Chuck Norris would if he was human. After what we thought was the first kilometer but felt a lot longer we got to the first Colour station.... BLUE. 

Running through the blue station there were people spraying you with the Blue Colouring (which I think is a type of colouring and corn flour). It was so cool because suddenly all you could see was blue everywhere (random image below)

After the blue station we all met up and surveyed the damage. It seemed that Gemma had got hit worse than Mel and myself. Mainly because Gemma was infront and took the brunt of the damage. 

From blue we kept running and went through more colour stations. At roughly the 3km mark we made a detour and started running on the racecourse. This was so cool, we were actually running on the grass where the Melbourne cup is run. Surprisingly the grass is really long and relative hard to run on. 

We kept running on the track through 2 more colour stations and finally past the finish line. By the end we had a fair bit of colour over us but we weren't covered. Also it didn't feel like a 5km run but that could also be because during the colour stations we ran a bit slower to get a bit more covered. 

Mel and I at the finish line. 5km! Suck on that cancer!

After collecting our free water bottle and packet of colour (they give you a free packet of colour) we made our way to the dance area. The dance area had massive speakers, music playing and heaps of people. The DJ counted us all down and suddenly everyone has thrown the colour out of their packets into the sky. Out of nowhere I could no longer see Gemma and Mel standing next to me. All I could see was Colour, it was soooo cool. 

From the outside it looks like this

From the inside it looks like this

And that was how I spent the morning of Sunday 25th November. I'm grateful that Mel told us about the event and even more grateful that her and Gemma ran with me (even though I have no doubt they could have kicked my ass if they wanted to).

I can't wait until I can run the Happiest 5km on the planet next year. 

7 Months On

Yesterday marked the 7th month mark from the fateful day when I walked into work and realised that I was sick. Since I haven't provided an update for a while I thought I would give a summary of how I am progressing.

Hairy Cell Leukemia
Based on my last bone marrow biopsy in July the docs detected I still unfortunately had 20% cancer. So at the end of this month I have another bone marrow biopsy booked to see if the cancer is still there. Unfortunately we believe it still will be because cancer isn't a good friend who leaves on it's own accord.

Obviously I'm not looking forward to the biopsy but I am looking forward to the drug they give you prior to the test. You are semi-sedated with the drug and after the operation I usually fall asleep and wake up an hour later feeling like I have had the best sleep ever.

I'm sure I couldn't be a heroin addict but I could be a bone marrow drug addict. Luckily I don't know the drugs name. I imagine it's a slippery slope from a working professional to selling my  body on the streets to fund my bone marrow drug addiction.

If the test results show I still have cancer then we will start the second round of treatment. Instead of Chemo we will be using another drug called Mabthera. Mabthera is a more targeted treatment which shouldn't kill as many cells as Chemo does. In theory this means I shouldn't experience zero white blood cells like I did after the last treatment.

Infections
Based on my last PET scan (a PET scan, contrary to popular beliefs produces an 3d image of the body. In my case to measure the levels of infection..... not the number of pets I have) my body still showed a potential small level of infections in my body. My doctors couldn't say for certain if it was infections but figured it wasn't worth the risk of stopping antibiotics so my daily drug routine continues.

On the plus side I passed the Pharmaceuticals Benefit Scheme (PBS) safety net. For those who don't know the Australian government have a scheme which certain medications are subsidised by the government, these drugs are on the PBS. All medications that I am prescribed are on the PBS which means I am buying them at a discount. The safety net helps to further reduce the cost of medication once you spend too much in a year. For me once I spent over $1,363.30 then all medications I purchase after that is only costing me $5.80 per prescription.

Ileostomy
Unfortunately business as usual in regards to my Ostomy surgery. I still have a wound at the surgical site which the wound care gets changed weekly. When that does heal I'll have an interesting looking scar from the mid chest all the way down to just above the groin.

My doctor doesn't want to attempt the reversal until the cancer has gone so it looks like I have this thing until at least Feb / Mar next year.

Voice and Physio
Every Friday I have speech therapy and physio which I really enjoy. Speech therapy has involved exercises to get me using my voice properly and not straining my voice box. This usually involves warming up the voice with different tones, for example humming, saying 'eeeee', saving 'aaaaaaa'.

One of my big problems is in loud environments (pubs, restaurants) it is really difficult for me to communicate since my voice has no strength. So as an exercise, Vanessa (my speech therapist) had me yelling words out at the top of my lungs. To make it seem less weird she would yell the word then I had to yell it out as well. Her choice of words sometimes I question. After she yelled out "HELP" and "GO AWAY" I was expecting some of the other staff to rush into the room and tackle me to the ground.

Physio is an hour long group class once a week. I needed this because unfortunately when I started I couldn't complete 1 push-up on my knees. My physio Aaron has me doing a lot of upper body weights on a cable machine and with free weights (cable machine pictured below)

I focus on the lower body workout out of physio by riding my bike and when motivated doing the 1,000 steps....... very very slowly.

For those who are interested below is my workout program

1. Cable chest press
2. Cable Tricep extension
3. Seated Row
4. Barbell pull down
5. Bicep curls
6. Cable flys
7. Deadlifts (using the cable machine)
8. If I have time I add in lunges

Physio by far is the best appointment I have, leaving after an hour and having sore muscles is a great feeling. I can now complete 3 push-ups on my knees, in no time I'll be able to complete an hour core workout.... well maybe not but hopefully sometime soon. 

Life in Singapore

Unfortunately my apartment in Singapore has been packed up and is in the process of being shipped back to Australia. I can't wait for the day when I can get back to Singapore to visit. I miss the friends I have, being able to buy dinner for $3, Dragon boating, OC and to some extent beefcake (well the dinner after beefcake with friends was the best). 

Changing Faces

The one thing that shocked me the most whilst being sick was how much weight and muscle I lost in such a short time. I don't think this can be explained accurately with words so below is pictures of my 2012 Extreme Makeover


March 2012 - Before the storm
Having a few beers at Molly's with our dragon boat team

April 2012 - Goodbye Singapore

What I looked like leaving Singapore after 3 weeks in hospital. A total of about 18kg lost in 3 weeks

May 2012 - Not even Ned Kelly's beard was this good

Picture of me in the intensive care unit just before I finally decided to shave

24th June - Released from hospital

Me at Ryders first birthday party after being finally released on that day

September 2012

I don't have a photo yet but I am happy that I have put on 17kg and I'm back to 70kg. Unfortunately this means my high junk food diet has been slowing down as I look to eat healthier. 

Another Day..... Another infection - Week 2 & 3

During the second week I finally got answers. The doctors had detected a virus called CMV in my bloods, it took a while to find because when I was first admitted to hospital I didn't have the virus.

So now we had the virus identified treatment could begin. I was put on an anti-biotic which was taken 2 times a day (via a drip). As soon as this treatment started it didn't take long for the temperatures and the crazy shakes to go away. Finally I felt I was on the mend again but I still didn't know how long I would have to be in hospital.

Life in hospital is very boring to say the least. The food routine is breakfast at 8:30am, lunch at 12:00pm and dinner at 5pm. Then a 15 hour break until you get breakfast again....... something is seriously wrong with the food schedule. In between meals you have a television and if you are lucky enough to be disconnected from a drip you can go for a walk.

I found during week 2 and 3 I couldn't sleep at nighttime. One of my nurses suggested that I try sleeping pills so that night I asked for a tablet. In my mind you take the tablet then BAM you are asleep. I was about to be bitterly disappointed. So I took the pill and there was no Kaboom, there was meant to be a kaboom. I ended up laying in bed waiting to fall asleep but sleep never came. I'm glad I didn't pay for the pills cause I would have felt totally ripped off.

Finally at around 4am I would get to sleep only to be woken up at about 8am just before breakfast. After breakfast I would usually fall asleep again and wake up just before lunch and my parents arrived. We could usually then head out for the afternoon and get back in time for dinner (if we didn't have it whilst we were out).

I ended up staying in total 2.5 weeks in hospital before I was sent home with another heap of oral anti-biotics. Hopefully this time I will be home for longer than a few weeks with no more hiccups. 

Another Day..... Another infection - Week 1

Things were looking really positive on Wednesday the 4th July. I had an appointment with my doctor in hospital and my blood counts were looking really good. So good I got taken off a number of drugs I was taking including an injection I needed to give myself daily.

The weekend was going to be really good weather (well good for a Melbourne winter) so we were off to Venus Bay for the weekend starting on Friday. When Friday morning came I woke up had a shower and waited for the nurse at home to arrive. Suddenly I started losing my vision....... oh no I realised that I was about to pass out.

Luckily it passed and I was able to stumble to the hallway to get David just in case it happened again. When my nurse arrived 15 minutes later I told her so she decided to take my temperature and blood pressure. Blood pressure came back low and temperature came back high...... I was in trouble.

After a call into Peter Mac (my hospital) they advised that we call an ambulance straight away to take us to a local hospital. This was because they didn't have any available beds at Peter Mac at that time. After about 10 minutes of waiting the ambulance was at the front doorstep.

On board the ambulance the "Ambo's" put a cannula into my vein and started getting fluids into my body. Once at the hospital they continued pumping fluids into my body, took blood and x-rayed my chest. This didn't find anything that pointed them to why I had a temperature. They decided not to do any more tests since I was going to be transferred to Peter Mac anyway. So the rest of the day I waited in the hospital for a bed to become available then another 3 hours for an ambulance to transport me to Peter Mac. Our Venus Bay weekend wasn't looking good.

Once at Peter Mac they ran a number of tests (including taking blood and x-raying my chest which had already been done). These tests didn't find anything so I was booked in the following week to have the following done:
1. Camera put down my throat and into my lungs to check my lungs
2. Camera put into my stoma to ensure it was alright
3. CT scan to check the infections in my body.
4. Echo of the heart


The camera into my lungs was first and I convinced the anesthetist to put me under because I didn't imagine it would be pleasant to be awake during that test. So after being put under I woke back up in the operating room and everything was all done. Only problem was I had a sore throat because they put a tube down my throat. Wasn't happy about that because my voice is still not perfect so I was pretty certain this wasn't going to help.

Next test on the Wednesday was the camera in my stoma. I was assured this wasn't going to hurt as I would be put on a nice drug that relaxes me, similar to the drug I got when they take bone marrow. I love that drug because you are half awake in regards to if someone says your name you will wake up and respond but most times I am totally out of it and sleep through the tests.

So once we got to the OR (operating room) I was expecting the drug to be injected. The anesthestist then tells me because I have fluid in my lungs they don't want to give it to me because they would then have to put a breathing tube down my throat. So instead I was given a drug to relax me a bit........... what they didn't realise is I didn't need a relaxant I needed something that stopped me feeling the pain I was about to endure.

The following 10 minutes were some of the most uncomfortable moments I've had at Peter Mac. It involved me swearing followed by the anesthetist saying "I've just given you more pain medication.... is it working? Great I thought give the medication after I get pain...... wouldn't it be smarter to give it before hand? Unfortunately the pain medication didn't really help so I endured an agonising 10 minutes whilst the surgeon inspected my insides and took some biopsy samples.

At least the other two tests which were scheduled for the end of the week were not as bad. The ECHO is like getting an ultrasound around your heart and the CT scan is quick and painless. The only pain is you have to drink a litre of liquid before the scan and my nurses only gave me 1.5 hours to drink it in.

So after the first week back in hospital I was very depressed because I had all these tests and the doctors still didn't know what was wrong with me. My symptoms had also got worse so when I had a temperature I would be freezing cold and then I couldn't stop shaking. This is referred to Rigor in the medical world, I call it the crazy shakes. Luckily there is a medication to stop the crazy shakes so when they came on the nurses would inject the meds and five minutes later I had stopped shaking. Eventually the temperature would go thanks to Paracetamol until 8 hours later when it would start again.

13 Weeks

There was lots of tears, pain and joy in my 13 weeks in hospital. I remember having days where I thought I would never leave but from Sunday 16th June I am a free man...... well I'm a man on parole, but more on that later. 

I got released from Peter Mac around 2pm, after a quick goodbye to the fantastic nurses we jumped in the car to head to Queen Vic Market. It was a quick visit to QVM, we went to stock up on lollies and chocolate covered coffee beans (something we struggle to get in Singapore, but Lisa does make a great version from scratch). We also got some cheap steaks for our family dinner that night, the late afternoon specials at the market are fantastic. 

After QVM I made it to my Brendan and Rhiannon's place for Ryder's B'day. Getting to Brendan's and being able to see friends was a great way to spend my Sunday afternoon, for once I felt like a real person again. 

That night we had a family dinner at mum and dads where I had a small glass of wine. With the combination of 13 weeks without drinking and the antibiotics I am on I instantly got light headed. This is great, suddenly I am like a 16 year old having his first drink. Hopefully when I finally get back to Singapore I don't have to do a "down down" because I'm pretty certain I will set the record for the slowest down down ever (which is pretty hard since Steph is incredibly slow :-). 

Being released from hospital is a great step forward but unfortunately it doesn't mean that I am fully cured. The good news is I no longer have cancer but I still have a healing wound (from where I was cut open for surgery), infections, lost voice and very underweight (I have lost a 1/3 of my body weight). To ensure I am healing Peter Mac have organised a nurse to visit me at home 3 days a week. The nurse takes my blood 2 days a week and changes my wound care 3 days a week.  Apart from the nurse at home I have roughly once a week appointments with my doctors back at Peter Mac.  

I am hopeful after a month these visits and drugs I am on are reduced and I can start getting back into work and living a normal life.

So what can I take out of being in hospital for 13 weeks? There are a few things that this experience has taught me:

1. Cancer sucks

2. Blood isn't just the red stuff that comes out of your body. I can't believe how much more I know about blood now. 

3. The staff at Peter Mac and the hospital in general are fantastic. 

4. Never ever stay more than a week in a Singapore hospital if you are not a local (yes I still haven't gotten over the zero level of care I got from that hospital).

Most importantly the one thing that getting sick  has made me aware of is how grateful I am to have the friends and family I have (both here in Australia, Singapore and throughout my workplace). Throughout my 13 weeks I received incredible support from everyone from visits to hospital, presents and facebook messages. But most touching was the amount of friends who volunteered to donate their white blood cells, thank you all for your support. 

I look forward to seeing lots of you at the F#@! off cancer party I will be hosting when I can finally drink again. 

Counts going up, physio and a hole in my nose.

Today my white blood count finally hit the magical figure of 1!!!! Welcome back immune system, now get into gear and clear the infections and fix my voice box.

Anyway what has transpired over the last few days?

Yesterday I had a visit from my physio and and ENT (ear, nose, throat and eye) doctors. My physio has written me up a program and given me 1/2 and 1kg weights so I can start building some muscle. These are daily activities which I am yet to start so it will be interesting today. Again I feel like such a weakling since I can't do a shoulder press with a 1kg weight and I have to resort to the 1/2kg. Why does muscle take so long to put on and is so quick to come off?

My physio also gave me a new walker to walk with outdoors. Unlike my old 2 wheel drive walker this is a 4 wheel drive and is red so I am heaps quicker. My new walker for those who can't picture it looks like this but without the basket

My weight today is 53.7 which hopefully is the lowest I will get. I am eating more than normal so the fact I am still going down is crazy. Obviously more junk food and food from the so called "Health Food" aisle in the supermarket is needed.

The ENT doctor came to pay me a visit for 2 reasons:
1. The fact I have lost my voice for 2 weeks
2. Because the middle section of my nose fell out the other night.
  - I now have a hole between my nostrils just above the bottom of my nose. Apparently it is called Nasal Septal. Common when you get nasal prongs and oxygen or if you use cocaine. Over the last 3 months I have had one of those and it isn't the good one.

The ENT doctor found I had a bruised voice box probably from coughing to much (damn you ICU and your coughing exercises). Because my white blood cells have been low it is taking longer than normal to recover but hopefully not long now. In terms of the Nasal Septal I don't have answers but instead a cool party trick.

My last exciting update is I have been fully switched to all oral anti-biotics and anti-fungals. As you may click on the only reason the doctors do this is so I can go home. Sure enough as long as my body absorbs the anti's, I don't get a new bug (dictated by a temperature) and my wound/stoma nurse is confident I am independent I will be home on Sunday. Finally my 3 month hospital "experience" will come to an end.

Fingers crossed for the next few days

White Blood Counts

So my days now are made up of visits from the doctors in the morning where I have the same 2 questions....

1. What's my counts?
2. When will my voice come back?

For point 1 I am specifically referring to my white blood cells (the healing ones). Most people have white blood cell counts at 5 or 6 but mine have been close to 0 for way to long. This is because Chemo completely wipes you so you have to wait for your body to start producing again (mine is just taking a lot longer than normal).

I'm happy at the moment that my white blood counts are staying pretty steady from .31 to .21 to .25 today (an increase is always good). So hopefully we are finally turning the corner and my body is getting out of this vacation it thinks it's allowed.

On the plus the doctors have given me day passes for the last 3 days so I have been able to spend at least 6 hours out of prison..... ooooops I mean hospital. Here is how we spent the weekend

Saturday - Home Day
Went home for the first time since good Friday. Andrew, David, Gemma and Penny came round and we got pizza. Managed 4 slices which I was damn impressed since my stomach must be the size of a pea. Got to finally see a game of thrones episode with Dave (only a few left) and did stupid things like making sure I can survive when I get home (i.e can I get out of bed myself, can I sit on the toilet and get up). As I said stupid but things that were playing on my mind.

We eventually went back to Peter Mac and was able to watch all of the footy there (Go the Swans!!!!). Mum and Dad stayed to the end of the game which for those who don't know was a thriller. I do however feel sorry for the 3 other people in the room, as quiet as we tried I am sure they couldn't sleep through our cheering or angry words.

Sunday - Walking Day
Went to South Melbourne market, unfortunately couldn't find a nice beanie but did have a dim sim and doughnut. After that we went for a drive to see where Dad used to live and then to St. Kilda and Port Melbourne. At Port Melbourne we walked to the end of pier to have a look, amazing view and lots of nice apartments around that area. From there we found a cafe for some cake and coffee, I had a lemon lime and bitters and a cookie which would only look normal in a giants hand.

Sunday was the most I had walked in months so eventually I was pretty stuffed and we went back to Peter Mac where I forced half my dinner done (the dim sim really filled me up).

Today?????
So today I am heading back home and we are going to have a bbq. On the menu will be Kangaroo, full of protein and something I don't get in hospital. Probably not as much walking today but I will at least get some in since we are going shopping first for some warmer clothes.

I also got weighed today and I weigh 55.5kg. We think we have now taken the fluid out which means this is my true weight and I am off diarrhetic pills (these pills make you pee more liquid than you actually put in, it's amazing). So from 78kg when I am healthy to 55.5kg, I have a long way to go.

So hopefully my next blog update is one that says my white blood cells have jumped up closer to number 1. But right now it's back to my favourite game...... the waiting game. 

Where have I been?

It has been a crazy few weeks that I do not want to go through again. I have been transferred to Peter Mac  from St. Vincents because I was pretty much recovered at St. V's (or so they thought).

From the surgery or something at St. V's I have picked up a fungal infection. Usually your body will fight that off but when your body has no white blood cells (the chemo kills them) you can't fight infection. I have been on a lot of antibiotics but they didn't really seem to be doing the job.

So I am now on a special program where I have friends (A huge thanks to all my friends the response to donate it has been so overwhelming) donating their white blood cells. This involves them for 3 days having a machine take their blood spin out the white blood cells and put the other blood back. The blood then goes to me which helps fight infection.

Usually everything goes alright but I did have a reaction one night to the blood. This caused crazy panic in the ward and eventually I was taken to the ICU unit here in Peter Mac. In ICU you are constantly monitored so your freedom is non existent. If you need the bathroom you use a jug and you can't have the internet. It's not the best place to be, so over the next few days I was transferred from the ward to the ICU about 4 times (talk about crazy).

Finally I am now in the ward with internet access and a bit of freedom. The plan is to continue to give me white blood cells until my own white blood counts come to an acceptable level. I believe the doctors want me to maintain a white blood count of at least .3 and today I was sitting at .24 so not far off. For those who want to know healthy people have white blood counts of about 6 so I am a long way off being fully recovered.

Again we play the waiting game, unsure when I'll get out but fingers crossed it is soon. 

My Surgery

This is probably going to be the hardest post I write. I debated long and hard if I explain what surgery I have had. In the end I realise that this surgery doesn't restrict my lifestyle and the only choice I had was surgery or death.

The day I was raced to the emergency department at St. Vincent I was losing blood out my body. After the original procedure didn't work it was decided that I needed to have the dead parts of my bowel removed. After the dead parts of my bowel is removed an opening called a stoma is created in my stomach, this is where bodily waste now exits.

For my surgery I have had an Ileostomy surgery which is part of the small intestine coming out my stomach. For more information ironically the company I work for deals with this and has an excellent website (http://www.convatec.com.au/enau/cvtoc-ileostsu/cvt-portallev1/0/detail/0/2162/4186/ileostomy-surgery.aspx).

The one advantage I have with my Stoma surgery is it is fully reversible. Only half my bowel was dead so the after 6 months they will reconnect me and life will be back to normal. In the meantime I have 6 months of my living life with a pouch attached to my stomach.

In terms of lifestyle this will not affect my ability to do anything. I can still run, paddle, swim, scuba dive and do any normal activity. The only thing I have to be conscious of is the food and drinks I have to ensure minimal gas and no blockages. I've noticed over the last week of living with this sneaking out a silent fart is no longer possible. The great thing is the pouches have a filter so it doesn't smell just sounds like a chainsaw ripping up.

So there is my surgery, I definitely don't want to be treated any different but now you know it will help to explain the noises coming from my stomach when we are out drinking or at dinner.

ICU

Surgery was fairly successful because I remember waking up in a room, unable to speak with a tube down my throat. Apparently this was my introduction to ICU.

ICU is one of the worst places to be in a hospital and the one at St. Vincent is no exception. Because of my chemo I was in a single room. This room had the back of the bed against a window and I was facing a door to the main ICU area. This was going to be my home for the next week, enough to make you go crazy. 

I remember drifting in and out of consciousness for that day with no clue what had happened. Finally I got the tube out of my throat so I could talk which was a relief. I had lots of pain so I got a morphine button which meant I could deliver morphine to myself when I needed it. Sounds like fun but you can only have 1 hit every 5 minutes and it made me feel sick. So even though the pain went away it felt like I was going to throw up. Needless to say I didn't use much morphine. 

I spent the next week in ICU before finally being transferred to the ward.

Surgery

The ambulance took me to St. Vincents where I was promptly taken into surgery. The idea was that the surgeons were going to try and stop the bleeding by soldering or glueing the bleeding spot and if that didn't work they would have to cut me up and do surgery.

To solder or glue the spot the surgeon wanted to keep me awake so I was made pretty numb whilst they stuck some stuff in my groin to stop the bleeding. All I remember is having to take deep breathes and eventually being told they couldn't get the bleeding spot and that I needed surgery. At least I was going to be put under for that one so I would wake up feeling great.

Code Red

Whilst in Peter Mac you occasionally heard announcements for different codes (i.e. Code Grey, Code Red). Well on the night I was going to leave it was my time for a Code Red.

I got up from bed and was about to go to the bathroom when I felt like I was going to faint. I quickly got back on the bed with help from Dad and then I made mum hit the emergency buzzer. I had started bleeding out a part of your body you shouldn't bleed from.

I was suddenly bombarded by my nurse and about 5 different doctors. Within no time at all I had drips and all type of stuff hooked into me to keep me alive. When things finally settled it was realised I wasn't going home and an ambulance was called to take me to St. Vincent. 

Fluid Retention

We start fixing one thing then another thing breaks....... FRUSTRATING!!!!!

Right now my body is retaining fluids which means I have elephant feet, legs, thighs and chubby cheeks again. To give an idea of how much fluid my weight this morning was 72.3 (down from 74.1) so we think it would be close to 9kg worth of fluid. 

So now we are on a mission to get rid of the fluids which is not fun. This involves tablets which make you urinate. That is alright but the stupid thing was the doctors kept pumping saline through the drip, so on one hand I'm losing liquid then on the other they are pumping it in. I'm happy to say that this has been fixed today and I'm no longer having saline dripped through. 

The side effect of the drugs is I lose a lot of potassium and magnesium. This is a problem because now my potassium levels are very low so I am on other drugs to keep it high (potassium keeps the heart pumping so apparently it's pretty important). 

Finally today in an attempt to still let me leave tomorrow we are trying a new treatment. I am going to be given fluids which hopefully put the liquid back in my veins. I then get more drugs which will make me pass these liquids. I'm not looking forward to tonight when that kicks in but hopefully tomorrow the fluids have dropped down. 

So fingers crossed I can go home tomorrow but honestly it is looking more likely to be Wednesday or Thursday. 

Walk through the park

It's Saturday and the forecast is 26 degrees and sunny. Today the doctors are letting me out of this prison to go for a walk in the park next door........ FREEDOM!!!!!

Come about 2pm I finally got off all the drips had a shower and Dave and I headed across to the park. After struggling up 5 steps to get some cash out at the ATM we headed over to the park. Our destination was a cafe which apparently is in the center of the park so we started walking around.

The one thing I quickly noticed was how much fitness I had lost. Walking up a path which may be on a 1% incline felt like I was walking up a massive mountain. After a bit of walking and a few breaks sitting on the chairs we finally found the cafe (funny enough it was in the center of the park).

Dave and I got a seat outdoors in the sun and ordered some food and drinks. I ordered a hot chocolate, dave got a coffee and we shared a vanilla and a caramel slice... yummmm.

Currently in my arms I have tubes hanging out which is where the nurses pump me full of liquids. You would think with that in my arms most people wouldn't ask you to do to much. Apparently I was wrong, whilst having our afternoon tea I was asked to mind someone's baby and take photo's of a family. I'm sure if I had no hair they wouldn't have asked me to do those things.

Finally I decided it would be an idea to get back to the hospital. The walk back was very challenging and by the time I got back to my room I was totally exhausted. Mel and Simon came not long after and I'm sure I wasn't that entertaining since I was so tired (Sorry Mel and Simon).

It was a good day, hopefully my fitness comes back quickly when I am healthy. 

Chemo

Finally come on Friday I started my chemo treatment. The treatment involved being hooked up to the liquid for 2 hours a day and that's about it.

Before the first treatment I was a little nervous since you don't really know how your body will react. The nurses gave me some drugs which would prevent nausea then the drip started. To be honest I didn't feel any different with it going in so after 2 hours I felt fine.

I'm happy to report that I have had no side effects to the chemo at the moment. The only thing which was different was I could feel my spleen bubbling on Saturday and it was very uncomfortable. After speaking to the doctors they told me my spleen was the size of a football and normally it can't be felt. But mine could be felt hence why I've had so many medical students pushing my stomach. The chemo was popping all the hairy cell nodes which are in my spleen so that would have been the bubbling. Wow the wonders of modern medicine. 

So sick of hospital

Hospital blues set in over the last few days which suck. The blues are where you feel like things are not improving and you will never leave this place. Since moving to an Antibiotic I've seemed to have lost my appetite which isn't helping with the depression.

So the last few days and the next few days it's again playing the waiting game. That's the game where we have to wait until the drugs I am being pumped full of start to fix the bowel problems. Once fixed we can finally start Chemo so the fix cannot come quick enough. 

Steroids

The doctors decided today that they are going to attack the bowel problem with 2 separate treatments they are:

1. A treatment which attacks the bad antibodies in my body (think Yakult but on steroids)
2. A steroid treatment which reduces the inflammation in my bowel

Being so thin I was interested in the steroids but apparently it's not the same so I suppose I will have to do the hard yards to get muscles back.

In the morning my dietician paid me a visit and we are changing up my diet to remove any fibers which the body doesn't process. This was quite interesting because there are foods which I didn't know that the body doesn't process they are:

1. Corn
2. Wholegrain's
3. Nuts
4. Vegetables
5. Fruit with skin

I like my dietician because every time I see her she gives me more permission to eat unhealthy (I don't have to eat my vegetables, where was she when I was 7 years old?)

After my dietician I was visited by my physio for the first time. I explained to him with the calories I'm eating I want to start building some muscles back up. So after a quick visit to his office he came back with a workout I can do in my own room. Then when I'm removed from quarantine I can join a physio class they have every morning. My room workout includes an upper body workout and a lower body workout. It includes squats, calf raises and about 6 lower body exercises

For the upper body workout he came in with the smallest set of dumbbells, after being amazed at the size of the dumbbells I looked at the weight. OMG it's 1kg dumbbell, in the moment he reduced me to feeling like a 70 year old grandma.

The rest of the day was fairly uneventful, Mel paid me a visit and my family. So we sat around and talked (I'm starting to lose my voice now). I'm looking forward to starting my new workout tomorrow and seeing how I pull up Sunday

Pet Scan

Today was the last day of fasting because my last test was being done. I was having a Pet scan which apparently locates in your body where the cancer cells are.

So I was woken up at 7am and allowed a suger free breakfast which included Full Cream Milk, Cornflakes and Vegemite and toast. I think it was the first time I have had cornflakes since I was 16 so it was a great change from the usual breakfast.

The Pet scan was scheduled for 2pm so most of the morning was spent watching television. Dave and I watched the second episode of Game of Thrones which is a must watch series for anyone who isn't on it. Finally 2pm came, I was put into my chariot (wheelchair) and taken downstairs.

I was taken to a waiting room where I overheard a conversation with one of the patients and nurses. Apparently this patient didn't listen to the instructions and had a packet of chips an hour earlier so they couldn't do the scan. He was a bit annoyed to say the least (a bit of swearing) since he had to bring his whole family down from Bendigo for this scan.

After that small drama I was taken to a room with a bed and told to lie down. They then proceeded to pump me full of a liquid (I think it was glucose) which would show up on the scan. The liquid took an hour to go through my body so I could lay there or I was allowed to watch a DVD. I decided to try and get some sleep because there is nothing worse then getting an hour into a movie then having to stop it.

After what felt like 2 hours I was taken to the photo room and put on another bed. For 30 minutes I had to lay there as I was moved up and down a chamber and photos were taken of my body. It was a pretty painless experience and I was back up into my room by 5pm, right on dinner time.

Dinner included roast chicken, mashed potato and corn and for deserts I had a cheesecake (I love the food here!!!). The one problem I have found is being so thin my eyes want to eat more than my stomach can handle so after dinner I was bloated for quite sometime... but the cheesecake was worth it.

After dinner Kerri came and visited and brought me a gift bag with lollies and a magazine to keep me entertained. It's always good to get visitors as it makes the night go quicker. After everyone left my typical  night of late T.V watching happened before I finally crashed at midnight. Tomorrow should be a good day since I can finally have 3 meals and I am getting dim sims for lunch :-)

Easter and more tests

Over the Easter weekend it was pretty quiet. I did get a visit from the Easter Parents and got some easter eggs (Yay to be able to eat dairy again).

Come Tuesday the doctors had me scheduled for another bone marrow biopsy. This is because of some weird results from the Singapore doctors. Since my experience in Singapore was not great with the biopsy I really was not looking forward to it. Jess my nurse however told me that I can have a drug option which just really relaxes me. Cheapskates in Singapore didn't give me any drugs.

After rolling to my side I was given the drugs, from there I have limited memory of what happened next. I recall telling Shawn (the guy doing the biopsy) that he did a good job when he said all done then I remember waking up 1 and a half hours later in an empty room. Some drugs are sooooo awesome.

That night I was moved from Level 9 to Level 2 because a bed finally got open. It was disappointing to leave the penthouse and my nurses on Level 9. The Level 2 room is pretty good, the view isn't as good but it's a private room with a private bathroom.

Come Wednesday I had an x-ray, colonoscopy and a pet scan planned. For these I needed to fast on Tuesday and start drinking a liquid that would clear my bowels. I figured the joke was on the liquid, I have had diarrhea for the last month. There will be nothing in my stomach (famous last words). That night involved 3 different times I had to drink a liquid which tasted slightly fizzy and lemon. It also involved a good workout with sprints from the bed to the bathroom. 

Home then to Peter Mac

After the flight I was swiftly taken by mum, dad and David from the airport to mum and dad's. From there I saw Penny (my brothers dog who is being babysat by my parents). Animals do have an amazing effect on lifting the spirit so it was great to see her.

The next day involved catching up on some new television shows David had and lazing on mum and dad's couch. I did manage to stomach a whole meat pie which was the first lunch highlight I have had in 3 weeks.

Come Saturday I received a phone call from Peter Mac hospital saying they want me to come in but they have to check they have a bed. So after a little bit of a delay I received another phone call from Peter Mac saying to come in when we can.

That started the dilemma, the football was about to start but I really probably need to look after my health. With the angel (go to hospital) and the demon (Watch the footy) arguing on my shoulder for 30 minutes the angel won and we headed to Peter Mac.

I checked in fairly smoothly and was taken to my room on Level 9. Apparently I was meant to be on level 2 (the blood level) but they had no beds at the moment. The level 9 room was amazing, I had a great view over Melbourne and from the room you could see the MCG.

Later on I met my doctors and nurses (Jess was going to be my main daytime nurse. she was fantastic with always keeping me updated on things and explaining heaps, definitely the best nurse I've had). The doctors explained because it was Easter we couldn't do much until Tuesday but at least in hospital they could monitor me.

After that I had a kitchen staff come up and ask me to fill in my menu for tonight. After being in Singapore I nearly answered "I'll have the western meal". But after looking at the menu I was ecstatic. They offer a light dinner (sandwiches) or a cooked one with 2 options. If you don't like the options you can go to another menu for food. This menu includes all the good stuff like meat pies, lasagna, toasted ham and cheese sandwiches, pasta, dim sims. I felt I was going to settle into the hospital pretty well. 

The flight

We had a 9pm flight out of Singapore and because of the problems I have with my bowel we had booked business class on Jetstar (which is like Premium economy on Qantas). 

At the airport we checked the luggage in and after a brief wait mum and I said goodbye to Lisa and Debs who had come to see me off (Thanks Debs!!). From there we made our way to the lounge which I am no stranger to. 

What was different about this lounge experience is normally I setup my laptop and then get some food and a scotch or bourbon and coke. Unfortunately in this occasion I didn't think drinking was the best idea so leaving the lounge not half drunk was something new. 

After checking onto the plane the business class section was really nice. The staff were fantastic because they knew I was sick so they told me to let them know if I needed anything. The next 7 hours were quite uneventful, I watched "Questions for Ben" on the Jetstar iPad entertainment system then tried unsuccessfully to get some sleep.

The waiting game

So begins the waiting game, during this time the doctors didn't really give me any treatment they just monitored me and took my blood counts ever day.

After a week of a shared room I was transferred to a private room which was very handy since my bowel movements had become out of control so having a private bathroom made it a lot easier. During the second week of my hospital stay mum and dad flew over from Australia, Dad was staying for a week but mum extended her stay until I flew home (which would be 2 weeks).

Because answers from the doctors in Singapore was frustratingly slow Lisa did some awesome research and found an expert in Hairy Cell in Melbourne Australia, located in Peter Mac hospital. With Dad back in Australia he was in a position to contact them to see what the best course was whilst also sorting our my health insurance.

Back in Singapore I had got to the point where I had lost confidence in the medical staff so I told them that I want them to get me to a state where I can get on a plane and back to Australia. The doctors were quite open to the idea and when I suggested Saturday they quickly pushed it to Thursday. We realise this is because if I was released and then went back to their hospital it looked bad, but if I was in Australia quickly then it was Australia's problem.

I didn't mind because it meant I was finally going home. So come the Wednesday which was just under 3 weeks in hospital I was discharged and went back to my apartment. The next day we had an outpatient visit to the hospital just to ensure I was fit enough to get on a plane.

After some blood tests and a weight test which revealed I was 61.9kg (A loss of 16.1kg since I was healthy) I was cleared to leave Singapore. We met one last time with the doctor and painstakingly watched him take 30 minutes to email a reference letter to Peter Mac in Melbourne (some people are just not computer literate).

Back home I fell asleep whilst mum and Lisa packed for me (I wish all my work trips happened that way) and then the time came that I was off to the airport. 

You have Hairy Cell Leukaemia

I remember the doctor telling me that I had a form of cancer called Hairy Cell Leukaemia. It was weird, I always imagined that when you are told you have cancer you would panic, start crying or go straight into denial.

I did neither of these, I was pretty calm and then wanted to know how curable it was. In terms of cancer I am very lucky because Hairy Cell the doctors told me is fully treatable with most patients going into remission. The Chemo that I needed wasn't as bad as the poor people who have other cancers so it was something to be brighter about.

With a diagnosis done the doctors didn't want to start me on chemo until my blood counts and bowel problems got sorted. Still full of confidence in my doctors now begins the waiting game. 

Hospital #2

After arriving in an ambulance I was subjected to more scans before being given a bed. The bed was in a shared room with 5 other people because at the time the hospital didn't have any private rooms available. After spending a night in hospital I had my blood taken and then I got to see some doctors the next morning.

My experience with the doctor started off fantastic. I had a team of 3 haemoglobin doctors (blood doctors) come see my about alarming issues in my blood. Apparently all my blood counts including my white blood cells were very low which is why I was getting sick all the time. Because of the risk of infection the doctors quickly put me onto antibiotics.

The next few days are quite a blur, lots of blood tests and a bone marrow test. To get bone marrow I was rolled to my side whilst the doctor numbed my hip. From there all I felt was a lot of pressure on my hip whilst the doctor took 3 bits of bone. It was a fairly unpleasant experience which I wished they could have knocked me out for.

So the bone marrow tests were going to take a few days but hopefully soon we were going to get some answers.

Hospital #1

The taxi pulled up at the hospital and once explaining to reception that a doctor was expecting me I was promptly rushed onto a hospital bed.

Suddenly I had a nurse putting needles into me and I was on a drip. After sweating quite a bit it was decided that I needed to be put on another drip  to get my fluids back up. The doctor came and saw me and wanted to scan my stomach which was fairly bloated.

I had no problems with that but he then explained the cost of private hospitals in Singapore. I recall him saying that if I have to stay for a week it could cost up to $20,000 SGD. Wow that is crazy, so I decided to have some tests done at that hospital and if I needed to stay we would transfer to a public hospital.

So I got wheeled away to get my stomach scanned, this is when things suddenly became real. The person doing the scanning name was Paul which made me feel more confident. He told me that for the scan he needed to wipe some liquid on my bum. That didn't sound to bad so I agreed until I realised that he meant inside my bum. This was the first of many times I would have a mans finger up a part of my body I didn't want.

The scan happened pretty quickly and I was sent back to a room. I then heard the doctor say we needed to insert a catheter. Panic set in, after working in the medical industry I know what that is. Even though our company gives it a cute name like "Cathy" it's still something that no one wants to hear.

Needless to say the next 30 seconds will possibly the the worst in my life. But after a few minutes surprisingly your body forgets about it and you don't feel anything.

When the scan results came back it was good to see my appendix were in tact so no need to operate. However my spleen, kidney and liver were all very swollen. At that stage we made the decision to transfer me to a public hospital for further tests. I thought we would take a taxi but the doctor insisted on an Ambulance.

Fantastic, at least I get an ambulance ride to tick off the things I have done. So we loaded into the ambulance and then I was admitted into hospital number 2.  

Sick Again.....

I believe it was Friday the 9th of March but my days have now been blurred by laying in bed. The day started off fairly normal, I woke up with a bit of a chill but didn't think much of it. Got to work and suddenly I was shivering uncontrollably, stupidly my jacket I had taken to China and forgot to bring back into the office.

After sitting for 30 minutes and hardly being able to touch the keyboard I decided enough was enough I was off to the doctors and when I got better I was going to have a full medical (I had been sick every month since August 2011).

At the doctors she told me I had the flu, gave me a day off and flu medication (well she ran out so I had to try and get it from a pharmacy). I got back home started the drugs and suddenly felt a bit better so I thought I would be over it in no time.

Over the next few days things started to deteriorate, suddenly I had diarrhoea and I was vomiting. It was very hard to eat and drink anything so on Tuesday I went to the doctors again. This time I was told I had food poising and given the appropriate drugs.

High on hopes I would get better I started my treatment but Wednesday was the worst day. Thursday I eventually managed the strength to message Lisa to tell her I wasn't dead since I couldn't on Wednesday. Lisa promptly came around and convinced me we needed to see the doctor again.

So this time we went to another medical centre near home. The doctor saw me straight away, took one look and concluded I was going to the hospital. After a phone call to ensure I could get in to see the specialist we were in a taxi to hospital.