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.