Warning: Contains Graphic Content
In August 2020 I was diagnosed with Leukemia. After my first round of chemotherapy I was in remission but still had to undergo another 2 rounds of chemo. In the meantime I saw a specialist from Sydney who advised my best option was a Stem Cell Transplant, given the type of Leukemia I had they believed it would probably come back unless I had this done, and that it had a 70% chance of getting rid of the cancer for good, with a 10% chance it could kill me. After my third round of chemo I was released from hospital on the 30th of November, my Wedding Anniversary. The initial round of chemo really effected me, both physically and mentally, but I coped much better with the following two rounds, finding myself bored in the hospital and just wanting to go home.
While in there my parents and 2 of my brothers were tested to see if they were matches for the Stem Cell Transplant (my youngest brother wasn't tested as we are estranged, and he apparently laughed when finding out I was diagnosed and consistently wished for my death, brotherly love huh?). My brother Scott was a 100% match but they decided against using him due to his schizophrenia, instead saying they had found a Male, German donor who was a good enough match (11/12, markers I was told).
When I finally got home I was feeling pretty good, and realised how low on energy I had been feeling leading up to my diagnosis, including on my Mount Jellore walk with my friend Tristan. I went on a few hikes while waiting for my Stem Cell Transplant, including Barren Grounds and Gibbergunyah Reserve.
I had received a private instagram message from Ethan Zohn, winner of Survivor Africa (season 3), wishing me well on my treatment and letting me know I would crush cancer (Ethan himself having been through a Stem Cell Transplant twice). I finally got my date to go in for the transplant, and worrying I would die without ever getting to go on Survivor I bought myself the poorly received video game for the Nintendo Wii.
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| What a Fanboy |
Finally I went in for the treatment, making my way up to St Vincent's Hospital earlier in the morning to get a CVC (Central Venus Catheter) placed in my neck.
After waiting around all day for my room I was told the person was feeling to unwell to leave the room, and so I was sent to a different ward to find a bed for the night. I was instantly placed into a shared room filled with degenerate druggies. I quietly asked the nurse if I could speak to her outside, telling her that I did not feel comfortable staying in the room with these guys and that I was more than happy to just drive home, and come back up tomorrow for my room. However they did not want to let me do that due to the CVC in my neck (even though I had been at home for weeks on end with a PICC in my arm during my previous chemo). I insisted I would rather sleep in the hallway, feeling more comfortable there, then in the room with them (I've had bad run ins with junkies in the past).
The head nurse soon moved me into a reserved private room that was literally the next room over that was just being reserved in case of emergencies. I spent the night there, actually able to sleep without fear of getting robbed and was moved into my room in the cancer ward the next day to begin my treatment. I was given a breakdown of my treatments by day on a paper form so I could know what the days were set to entail.
I found the food in the hospital to be much more palatable than the food from Wollongong, (which I had a breakdown about when I returned home after my very first round of chemo).
I began gaining weight rapidly due to all the infusions being pumped into my body and very quickly found myself above 90kg (as my blood counts and weight where being recorded each day on a white board in front of my bed).
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| Chungus |
The day finally came around. Day Zero. Stem Cell time. It happened really fast and with no fuss, just like a blood transfusion. I felt like I was fine after it, but soon after, the diarrhea began. I can't recall how long it took after, but holy mother of hell it was bad. I think when it began I was going 15 times in a day, it was like an acid hose shooting out of my asshole. They soon put me on some meds to try and stem the flow, but it didn't seem to help that much, as my asshole got more and more sore, from both the acid spray and the constant wiping.
Soon the fevers and what the nurses called the 'rigors' began, getting so cold my body would uncontrollably shake and spasm and no matter how many heated blankets were placed on top of me I could not feel warm. I had to get X-Rays and blood tests looking for infections but none found anything as these fevers continued to happen, one night sweating so much my bed was drenched and I had to have my bedsheets changed 3 times in the one night. Eventually the Doctors decided they were worried it was my CVC and so it was decided I would get a CVC placed in the other side of my neck and the one I already had in would be removed.
They also wanted to give me a feeding tube, as apparently many people going through Stem Cell Transplant get mucositis, which is like ulcers in your mouth, throat, stomach making it too painful to even eat. I agreed at the behest of the nurses and dietitians even though I had been having no problem eating as of yet. Having it put in was the most painful thing I've ever experienced (and I've had a bone marrow biopsy while awake with the green whistle twice), they injected me with morphine but I didn't really find it to help the pain which was so unpleasant, within a day they had to take it back out and just hope for the best with me.
Soon the mucositis began, and I could feel that the fruit juices I was getting every day began to burn and sting as I drank them. I tried to eat, but I found it a struggle among the nausea, diarrhea, fevers and mucositis I wasn't consuming very much.
My hair then began to fall out and rather than wait till I was released, I asked a nurse and she shaved my head for me.
As the fevers began to get less frequent and the diarrhea began to settle the mucositis got even worse, to the point where I was almost unable to eat. It didn't help the chemotherapy had ruined my taste buds so everything tasted awful too. The doctors tried injections of morphine as well as oxycodone pills before eating food to try and help me be able to eat, as well as milkshake like food supplements.
It got to the point where I was only able to eat 2 minute cup noodles, as they didn't seem to hurt my throat, so I had visitors bring them in to me, but as to not run out I was only eating 1 cup of noodles a day and still keeping the weight on from my constant infusions. I began to feel really weak, and run down just from my dietary input. As the doctors started talking about my release.
Upon release I would have rent free accommodation at the Quest in Bondi Junction. I was feeling so shit that I didn't believe I should be getting released. I had a test walk around with the physical therapy girl and a ride on a exercise bicycle and was told I would be getting released, but would have to travel to a local Sydpath Pathology for blood tests twice a week as well as come in for regular check ups at the Kinghorn Cancer Centre. I had my CVC taken out and was a little excited yet apprehensive about being released, but soon found myself loving the accommodation, being able to relax from the noise of buzzing and beeping.
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| At The Quest, Bondi Junction |
I began to finally get meals, and start getting some nutrition in my body, and although my taste buds where all messed up so nothing tasted any good I believe it did my body well.
It was decided that my Wife would stay up for the first 2 weeks with me, then my Dad would stay for 2 weeks and then my Wife would return.
After my first week I was finally able to remove the bandage of the holes on my neck from my CVC.
Leading up towards the end of my Wife's stay (the Easter long weekend) I began to get incredible pain every time I went to the toilet. This pain continued for a few days before little flecks of blood began to come out.
At first I assumed I had kidney stones but my Doctor worried it might be a virus that can stay active in your body and could be causing it. The flecks of blood soon became bigger blood clots I had to pass, and even sometimes my pee would have have blood in it. Soon I was not having to pass blood, but big mucus like globules, some as big as marbles.
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| Gross as fuck right? Imagine how I felt. |
The Doctors decided to re-admit me to hospital on Thursday, the day before Good Friday as they were concerned with anything going wrong over the Easter Long Weekend.
In hospital they wanted to insert a catheter into my penis so that they could clear out my bladder from any potential blockages. The Doctor tried to insert it, in what was probably the most embarrassing moment of my life. My penis was like a horse penis, and not in the good large way, in the way where it wanted to retract completely inside my body (like a horses penis) out of fear. The process was painful, and ultimately unsuccessful as they couldn't get it into my bladder correctly and had to take it out (as the pain from the clots made me need to pee frequently, even though barely anything would come out).
My nutrition began to struggle again as I found the hospital food less palatable this time and struggled to eat, living off a piece of toast a day and some cans of lemonade. After an ultrasound of my bladder to check for potential blockages, they had decided that my bladder wall was shedding either due to the chemo or the virus. They decided they were not going to proactively do anything to help, so feeling annoyed with being in hospital I signed myself out, content to deal with the pain in the accommodation.
My Dad picked me up, having now swapped with my Wife and over the next few days the bleeding began to slow and eventually stop.
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| Me and all my medication (I got that shirt in Finland) |
My taste also began to slowly return and I tried to get out on a walk and do some exercise and spend some time in the sun. Going for a walk one day with my Dad down to Centennial Park.
My Dad found the accommodation pretty boring, so he would often go for big walks while I sat around flicking through the TV, finding a routine of watching trivia shows started with The Chase (UK), Think Tank, The Chase (Au), Mastermind, Jeopardy and the night it was on, Hard Quiz.
My Dad swapped with my Wife after his stint was done and we continued the monotony of life in the accommodation which we had began to find incredibly stifling (as my Wife had to work from home within the small confines of the accommodation). At some point during this time I had to get a Bone Marrow Biopsy done, while awake, with the green whistle. My Doctor saw my Wife and I afterwards and let me know that I had the glandular fever virus according to my blood test results, and that due to being on an immunosuppressant drug (to not get Graft vs Host Disease), my body wasn't fighting it off causing it to spread and become a type of Lymphoma. My Doctor insured us not to stress, as it is something that can occur with Stem Cell Transplants and that the counts had gone down a little so there was the chance my body would fight it off.
On the 22nd of April 2021 I was able to leave the Quest and finally return home, and 2 days later we celebrated the 2nd birthday of our gorgeous Dog.
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| Orla |
Not long after being home my Doctor called to say they wanted me to go for a PET Scan so see about this Lymphoma. So I travelled backup to the hospital to have a PET Scan which should the inflamed Lymph nodes throughout my body. My Doctor said they would put me on a 4 week treatment of a thing called Rituximab to fight this off, insuring me that she believed that this was all that was needed to get it under control.
It was a pretty boring infusion, and very slow on my first treatment, increasing in speed after that, once they knew I would have no adverse reaction. While at home I focused on doing more family history stuff and binge watching Ancient Roman shows like Domina and Barbarians (and of course, Jurassic World Camp Cretaceous Season 3).
While talking about history with my Dad on the long trips up to the city we often drove past Kurnell, where James Cook first landed in Australia my Dad told me. After my third treatment with only one treatment left we stopped in at Kurnell on the way home for me to explore some local, and National History of Australia (regardless of how you feel about the history, it is still part of history).
After my forth treatment I had a following PET Scan, but was told to return to Sydney on the Thursday to see my Doctor for my results (which I was briefly told over the phone looked good) but also for my Day 100 post transplant catch up.
The next day I saw my Doctor for my 100 day post transplant appointment. The doctor let me know my rituximab treatment had been successful and everything else was going well. We discussed that coming up in September I would receive all my childhood vaccinations and after that he would be happy for me to return to work. In the mean time I was told to exercise, get strong again and continue my recovery.
