Reversal

Monday 8th September the day had finally come to have my Ileostomy reversed. It had been a day I had been waiting for since the 25th April 2012..... 866 days. I write this just over a week later in what I can only describe as one of the hardest weeks I've had in a few years.

Surgery itself was pretty successful, or so my surgeons tell me. I went in about 8am, after a few medicines and antibiotics I was put to sleep not quite knowing if I would wake up with our without a pouch. In the preceding few months before surgery my surgical team had discovered a block in my large bowel and were unsure to what was causing it.

Due to that, instead of the small loop stoma takedown I was needed to be cut back open in order to investigate what was happening.

I woke up just after midday and I remember just laying in the bed falling in and out of sleep. Usually in that scenario I would have quickly checked if I had a pouch still but in this case I didn't. For once I was content on either option and whatever was needed was there. I believe it was about an hour later my surgeon saw me and told me that it was a success and they reversed the stoma, as well as removing more of my large bowel.

The next few hours I drifted in and out of sleep repeatedly, something that followed throughout the night. Although I tried to stay awake and watch the first episode of big brother I couldn't do it..... yes I do realise that maybe, just maybe big brother put me to sleep not the medication.

The next day was fairly uneventful, I went for a walk with the physio team and apart from that I was fairly contained to my room due to having drips and a catheter still in. The problem with the that is you can't get a t-shirt or pants on so if you want to walk then usually you have to give the patients a show by exposing your behind.... something I am sure the residents of ward 7 were glad I didn't do.

Really that Tuesday I spent just anxious, anxious that nothing would pass like last time. Anxious that again I would go through that excruciating pain which would result in another stoma. But Tuesday night I finally had my first bowel movement, I'm pretty sure I hadn't been that excited about this since I was a child.

The remainder of the stay in hospital was exceptionally uneventful. Drips came out, catheter came out, wound got cleaned and I just tried to start walking. Oh and the big thing which was I was constantly dashing to the bathroom, so apparently it takes quite a while for your large bowel to get off holiday mode and into work mode.

On Thursday, day 4 after the operation I was discharged from hospital to recover at home. For those following that is a new personal best in terms of hospital stints.

This last week has now been recovering at home, which has been really tough. The first few days I think I went to the bathroom 20+ times and there were points that I wondered if I had made the biggest mistake of my life with getting the reversal done. But after Sunday and trying Imodium things have suddenly improved greatly, suddenly now I can see that things will get better and my body will adjust.

Out of hospital in a record 5 days

After what is my shortest stay ever in Peter Mac I was released from hospital on Tuesday.... 5 days in total. This was due to the fact that the hospital run a great program which is designed to get people out of hospital quicker.

The program starts a day before and day of surgery where I was required to drink some carbohydrate drinks to keep my body healthy and prepared for the recovery. The program then has different goals everyday, an example being:

Day of Surgery

1. Drink 2 carbohydrate drinks before 6am
2. After surgery have a high protein drink / dinner
3. Get out of bed for 1 - 2 hours

Day 1

1. Sit out of bed for 4 hours
2. Walk twice during the day (50m each time)
3. Have a shower
4. Have intravenous fluids stopped

Day 2

1. Remove Catheter...... YAY!!!!!!!!
2. Walk 3 times (50m each time)
3. Keep up fluids

Day 3

1. Walking around freely and going to the bathroom unassisted
2. Eating and drinking normally
3. Stoma functioning as expected
4. Pain in under control

Day 4

1. Prepare to go home

Obviously not everything we did was in that exact order but it was pretty close. The parts that are highlights for me are:

Surgery Day - Get out of bed

After Surgery

So this was my first failure, I sat up out of bed with assistance from my nurse. After sitting on the bed for over a minute and waiting for the light headedness to disperse I stood up to walk to a seat which was 1m away. I got to the seat, sat down and felt incredibly light headed like I was going to faint. After a quick blood pressure test my blood pressure had dropped significantly, the decision was quickly made to get me back into bed. 2 minutes out of bed achieved, 1 - 2 hours out of bed failed

Day 1

On day 1 I managed to get out of bed, have a shower by myself and walk around the ward with the physio. I did spend a lot of time out of bed until the pain started getting worse so I got back into bed. 

My Intravenous drips stayed connected to me on this day mainly because as a preventative because of my past history I was getting quite a number of Anti-Biotics pumped into me.

Andrew and Gemma visited me today which was the day where I was in the most pain so no doubt I wasn't that much fun. 

Day 2

Day 2 started off the best, at 6am my nurse walked in and told me the catheter was coming out. For anyone who has had a catheter it isn't the best experience of it going in or coming out but for 2 days I had this feeling like something was pushing up against my bladder and it was really uncomfortable. I first felt this directly after surgery when I was in the recovery room, I asked the nurse if I had a catheter in and she told me I did. I remember thinking that they hadn't inserted it correctly and had missed my second bladder which was my Japenese bladder.... I don't know if this was because of really good drugs, me thinking about work, or the fact my cancer has a Japenese variant. 

Anyway having the catheter out was going to be a good thing, the nurse did a great job and within 5 - 10 seconds it was removed (I think the quicker they do it the less painful it seems)

On Day 2 I also had all my intravenous fluids stopped and was walking around by myself. Obviously I still had pain from being cut open but it was quite significantly less than the day before. That was probably an advantage for Mel who visited since I was a bit more perky than I was to Andrew and Gemma the day before

I'm a Falls Risk

Day 3

Today was more exercise, ensuring I was eating well, meeting with my wonderful stoma nurses and preparing for discharge the next day. Jamie visited me in hospital today, highlight of the day was seeing Jamie needing help from the nurse to get a gown on. 

Day 4

Home day!!!! Today we just wrapped things up from making sure I could manage the stoma, taking the wound care off the wound and getting my medication from pharmacy. At about 1:30pm my parents came and I was on my way home. 

So now I am home slowly recovering ready for the next surgery which I am told will be in about 3 months (so could be 3 - 6 months)

Happy Valentines Day

Two years ago my large and small bowel had a falling out. After living peacefully with each other for 30 years the small bowel finally had enough. The large bowel was just half the man he used to be so they needed a break. Last year they tried to get back together but things didn't work because they didn't gel.

Today I am celebrating Valentines day by finally having my small bowel and large bowel re-united. I am scheduled for surgery this morning where my surgeons will join my small bowel and large bowel together. After that they will create a "Loop Stoma" which is effectively another stoma but further up on another part of the small bowel. The loop stoma means that output still flows through to my Ostomy pouch whilst giving the large bowel and small bowel time to heal. Later on the year I will have the loop stoma taken out so output flows normally through my body.

Here I sit nervous waiting for the surgeons to ruin my body again.

Weekend away to Queensland...... finally

Last February I had flights booked to Queensland to celebrate our Chris (Stewey) and Tammy's engagement party. It was going to be a great weekend away with friends. We had the engagement party planned as well as a trip to one of the theme parks.

Unfortunately a few weeks before we were scheduled to depart I got the call that I was booked in for my reversal & splenectomy. At that time I had mixed feelings, although it would have been great to go to Queensland my reversal was something I had been waiting for a while. In hindsight with the complications, Queensland would have been soooo much better.

About a month ago, the opportunity came up again to go to Queensland to surprise our mate for his 28th Birthday. At that time I was starting to get overwhelmed with work so I was definitely keen for a break even for a weekend. Gemma helped organise all our flights and Tammy helped organise accommodation on the Gold Coast and kept it a secret from him.

On Thursday 12th September we flew out in style..... well Tiger Airways style headed to "BrisVegas". Once arriving at the airport Tammy picked us up and drove us to her parents place.

On the way we had to come up with ideas on how we could surprise him, I came up with some good ones but apparently no one thought to bring a bear costume. Instead we settled for us hiding in the laundry whilst we waited for Stewey to be a good fiancée and get Tammy a wine from the fridge.

Once at Tammy's parents place we all piled into the laundry which was attached to the kitchen. Tammy then went upstairs, crashed on the couch and told Stewey she needed a wine. Slowly Stewey went downstairs and into the kitchen, from our hiding spot in the laundry we could hear him speaking but we were unsure if he was going to come into laundry.

As we were contemplating jumping out, the door handle turned and the door started opening......... SURPRISE!!!!!! we yelled at him. Stewey who was obviously shocked jumped back then realised it was us. As he told us later you don't ever expect to find people hiding in your laundry. We were pretty proud of ourselves that it was so successful.

That night we had dinner and a few drinks before a relative early night ready for Dreamworld in the morning.

MCG Stadium Stomp

Anzac Day 2013 (Thursday 25th April) we jumped on a plane bound all the way from Melbourne to the sunny state of Tasmania. The occasion? To celebrate my brothers last weekend as a single man since he was getting married the following week.

This post isn't about the Tassie trip because we all know the rules.... what happens on a boys trip stays on the boys trip :-)

On the plane over I was reading the Herald Sun and saw an advertisement for something called the "MCG Stadium Stomp", although there wasn't a lot of information it seemed like a "fun" run up and down the MCG. Knowing that I needed a challenge to train for, I instantly asked Andrew, David and Jamie if they wanted to do it. Andrew was the only one who was interested, it was going to be done..... well if we remembered about it after  the massive weekend.

The Tassie weekend went by and then Andrew and Gemma's wedding finished. Somehow a few weeks after  that, on the 25th May both Andrew and myself signed up for the full course. The full course included a whopping "Seven Thousand Three Hundered and Forty Three Steps" (aka 7,343 but writing it makes it sound so much bigger).

Signing up is obviously the easy part, training... well that's the hard part. My plan of attack was to do as many stairs as I could leading up to the event. I'm no expert coach but I figured this would be the best way to train for a stair climb.

1,000 Steps at night

My training ground was going to be the 1,000 steps in the Dandenongs. Conveniently located within 30 minutes from work and just around the corner from my brother and parents. Although it's called the 1,000 steps I believe it's roughly 800 steps up the mountain. My goal was to be able to do this 4 times in a row just before the event (which is then roughly 6,400 steps done).

So once every weeknight and then on weekends I ventured over to the steps. Winter obviously is the worst time to train because it's cold, dark and did I mention cold? The first 15 minutes was always a struggle but by the time you reached the stairs (which is a 1km walk from the car) I was usually pretty warm.

Doing it in the dark was an experience, it's just you, the steps, occasionally possums and your weird imagination. Usually as I got tired my mind started wandering. One night I heard dogs barking and then I became paranoid that a fox was going to jump out and bite me. Please don't think about this with any common sense, yes foxes are scared of humans and probably wouldn't do that, I was tired and not thinking straight. Luckily the Walking Dead season had finished so imaginations of Zombies popping in my head didn't occur.

By the last week before the stadium stomp (Queen's Birthday weekend) I managed to do the steps 4 times with 4kg in a backpack. I was pretty certain I was ready, ready for what I wasn't quite sure. Below is my tracking of that day


Finally Sunday 16th of June arrived.... interestingly exactly a year since I was first released from hospital, way to celebrate. I arrived at Andrew's nice and early and we made our way into the "G" ready for our 10:30 start.

The outside of the MCG

For anyone that doesn't know what the MCG is, Paulipedia** describes it as a "Stadium on steroids". Effectively it's a stadium with a capacity of 100,018 people, it's huge.
** Paulipedia may or may not be an actual source

We picked up our race kit from outside the stadium and ventured inside to see what we had signed up for. Since we were 30 minutes early we got to see people who had started before us. It really sinks in how big the MCG is when you realise you are going to be running all over it.

Soon after it was nearly our time to start so we took off our jackets and dropped our bags at the baggage check. We then queued up in a massive line ready for the 10:30 wave of runners.

Before going into the event I had a goal of completing it under an hour. My rough logic was if I could do 1,800 steps every 15 minutes I was roughly there. What I didn't anticipate was the amount of running that was also involved.

After a short wait and after familiarising ourselves with the rules.... No running down the stairs, no overtaking people going down, hit every step on the way down and no music...... we were ready.

Below is the course map:

At the front of the queue they were sending off people in waves of 30 seconds. In my group there was Andrew, some random stranger and myself. Suddenly we were running, the start involved running around just over a quarter of the MCG before you finally hit your first step. Soon enough we hit our first step and ran into our first obstacle.... a runner from the previous group. Obviously following the instructions we painfully followed that runner down the first set of stairs and after 30 seconds before we could finally sprint past him when we started going up the stairs.

The task ahead of us

Andrew soon managed to get away from me.... well roughly in the first minute. So I was pretty certain I wasn't going to catch him very quickly but at least I had motivation to not let him beat me by too much.

For the next 20 or so minutes we sprinted up the stairs and slightly jogged down the stairs on the lower level of the MCG. This was a fairly easy process but did start to get frustrating not being able to overtake someone going down. Mainly because the stairs on the bottom level are massive, I understand level 4 is more of a risk but serious no overtaking on the bottom level?

After completing a full circle of the MCG we had to run up the internal stair cases to level 4. I was pretty puffed from the internal stairs but I bolted out on level 4 and started sprinting up the stairs. Level 4 steps are hard work, not only are they steeper but there is a lot more of them. I usually found that I could sprint up 3/4 of the steps then for the quarter I struggled up like an old man.

On the way down I didn't mind being stuck behind people as much as it gave me a chance to catch my breath before I tried to overtake them on the way up. At one point one of the staff informed us that we were half way through the course, I looked at my watch and it read 28 minutes. I felt pretty good at that stage, interestingly speaking to Andrew later he told me he doesn't often have violent thoughts but when she told him he was half way he wanted to throw her off the railing.

I just kept going along, not paying too much attention to how much time was left in the course. At one point and I looked up to see Andrew not really that far away from me. Typically we always had about 2 bays between us but at this stage it was less than a bay. Nothing like a bit of brotherly competition to inspire you through the pain.

Unfortunately for me Andrew is also quite competitive so when he saw me he put on the boosters and increased the distance. Eventually I turned a corner and the staff member informed me that this was the last "up" part, I looked at my watch and it read 53 minutes. I was pumped, I may actually reach  the goal of under an hour.

I sprinted up the last steps and then bolted down the internal stairs to the lower level. From there I got stuck behind a few people running down the last stairs but when I hit the MCG turf all I had left was to run around half the ground. Somehow even after 7,343 steps I still found the energy to sprint that last distance. Finally crossing the finish line with a total time of 56:40.

Andrew was waiting at the finishing line after narrowly missing defeat by getting a time of 55:45. Both our legs were like jelly after that and they wouldn't stop shaking. After picking up some free food, a drink and a drink bottle we headed into the city for a well deserved lunch.

After the climb enjoying my free banana

1 year later

Saturday the 9th March 2013 marked the 1 year mark since I walked out of our Singapore office to see a doctor because I felt sick. Looking back then I had no idea of the challenges that laid ahead of me.

So how are things 1 year on? Well at least we are quite a bit more optimistic that I won't die anytime soon but there is still a fair bit of treatment to go.

1. 8 months until we attempt the reversal again
2. Another bone marrow biopsy to ensure the cancer isn't increasing (25% left as of November 2012)
3. Depending on the bone marrow results more cancer treatment (hopefully not needed anytime soon)
4. Gain my fitness back from the last surgery (until I lose it again after the next surgery)

I'm pretty certain 2013 is going to be a long year. I remember being told by family and colleagues that as you grow older the years get quicker. I probably would have agreed before moving to Singapore but I feel now the years get quicker when you do the same thing year after year.

2011 for me was a long year and for good reasons. I met lots of amazing people and made lasting friendships, I travelled to lots of new countries and tried lots of new things. 2012 on the other hand also was a long year but for mainly bad reasons (although some good things did happen in 2012).

What did March 2012 to March 2013 entail

The Bad:
1. Getting diagnosed with Hairy Cell Leukemia
2. Spending 4.5 months in hosptial
3. Losing 25kg
4. Having half my large bowel removed
5. Infections, Infections, Infections and more Infections
6. Having to leave Singapore
7. Being cut open 3 times
8. Learning the reversal failed and I have to wait 8 more months
9. Losing my voice and living with the fact that it will probably never come back fully (there goes my dreams to become the next Australian idol..... that and the fact I could never sing..... minor details)

The Good:
1. Seeing Sydney Swans win the Grand Final
2. Mark and Erin's wedding
3. Running 5km in the Colour Run
4. Meeting lots of new people, although the majority are medical professionals its always good to meet new people
5. 16km hike from the 1,000 steps to Sky High

Heres hoping when I do a post in a years time that the "Good" list is longer than the "Bad" list. 

CT Scan and Second Surgery

Saturday morning I had a surgeon visited who had requested an emergency CT scan. They weren't happy with the pain I had that morning and wanted to see what was going inside my body.

After a quick scan the surgeon came and visited me and gave me the bad news. From the scan they could see fluid and liquid buildup inside my body but they were unsure to where it was coming from. He told me it could be a leak but I would have to be cut back open for them to have a look.

At 1pm that day they had assembled their surgical team from their weekend (Peter Mac is amazing) and I was wheeled to the theatre. This time I was given an epidural which numbed my abdomen since I was still in a bit of pain. I found it numbed certain areas of the abdomen but didn't provide full coverage. Shortly after I was put asleep again and cut back open.

I woke up in theater again and my first reaction was to check to see if I had a stoma again. I slowly patted my stomach and then felt that telltale plastic Ostomy bag feel. My world span, I knew it was back.

I spoke to my surgeon shortly after who explained there was a leak between the small and large bowel that they couldn't seal. He decided to give me another illeostomy for at least 6 - 8 months before we try the reversal again.

Life's a bitch.