Young blood cancer survivor

Acute Myeloid Leukaemia my story....

I was 19 when I was diagnosed with Acute Myeloid Leukaemia in 2008, and it was only by chance that it was discovered. 

At the time I was working at a service station, and would often do graveyard shifts, and because I wasn’t studying during the day, would often stay up late and wake up in the afternoon, so being tired for me was a daily thing, not something that would spark any concern, and therefore was not seen to me as a symptom of an illness. 

How my journey with cancer began

After a week or two of having cold and flu signs, I was pressured into going to see a doctor just for peace of mind. The doctor diagnosed me with tonsillitis, with a rare chance of it being glandular fever, and prescribed me with a weeks worth of antibiotics and the advice to come back if the symptoms persisted.

By the end of the week things had only become worse, and so a second trip to the doctor resulted in a blood test to determine whether or not it was glandular fever. Later that night, a phone call established that signs of Leukaemia were present in my blood test, and I was told to go into the hospital straight away. This was the start of a very long life changing experience.

After being given some general ins and outs about what would take place, I had to have an aphaeresis procedure to reduce the high level of white blood cells I had in my body, which left me so exhausted. After all of these tests, I was taken to what became my room for the next month. No leaving that room. No flowers or contaminants in the room. 

The chemo I had was administered over a number of consecutive days every month. When chemo was given, cells would drop to nothing, and then they would rebuild again. Because of my immune system being completely wiped, I was not allowed the slightest risk of infection, and thus, was trapped in that room.

My hair at the time was about shoulder length, and one of the first reactions of people was "What about his hair?! He loves it!" 

This, perhaps surprisingly, was one of the things I was ok with. At one point I was told that a small percentage of people don't lose their hair, and of course after a week and a half of not losing my hair I was convinced I was in that percentage. Unfortunately, I still had to lose my hair, but it wasn’t that bad at all in the end!

The depression of being stuck in such a tiny room for so long hit hard, and many nights I cried. For a few days, I lost my eyesight, which really scared me. I was made to go on what was called a low bacteria diet, where a lot of things were cut out - I couldn't eat food that grew in the ground, or have anything reheated, just to give a very small example. I had to have a blood test every 4 hours, so sleep was basically not an option. I was exhausted, scared, and bored 99% of the time. Every morning my blood results were written on a white board in my room, showing the increase or decrease of my results, which was a nice way to monitor how I was progressing.

Somehow, eventually, that month went by. I remember feeling air again. It sounds silly, but it's a bizarre feeling after so long in isolation.

After this, I was to go through 2 rounds of consolidation chemo, where, for a little while, I had treatment at home, where I had a machine plugged into me that would pump through the chemo without me having to be at hospital. Home nurses would come to my home daily, taking bloods, giving meds, and the general upkeep. This home treatment didn't last long, though, because as my immune system dropped, infections set in. If my temperature ever rose to 38 degrees Celsius or higher, I had to be taken straight into hospital for infection control. This happened quite a few times.

My bone marrow transplant journey...

After an appointment with my haematologist, I was eventually told that I would need to have a bone marrow transplant, and due to my odd cytogenetic makeup, a match would be hard to find if my family was not compatible. Unfortunately, no one in my family matched, and searching had to move to the global registry. In the mean time, I was given a timetable of what would happen in between then, and the hopeful transplant.

The day finally came that I was told that they found a match, despite thinking otherwise. I went in for treatment again, a couple of weeks before the date of my transplant, set for July 31 2008, to have full body radiation as well as chemotherapy. This was the first time in my experience that I had radiotherapy. I had to go twice a day, morning and night, and lay completely still on a table for an hour or so at a time, and then be turned around and have the same. After these bouts I had chemo to clear my system. The day of the transplant came, and I was waiting nervously with my Mum. July 31 didn't happen, the marrow never came. I was terrified.

The next day it came, and the procedure started. The transplant itself is a rather bland procedure, as it is just an IV feed through, with constant checks every few minutes of my vitals. After this was done, it was continuing on with the rest of the cycle, waiting for my blood counts to come back up. The transplant altered my blood type, and, when it eventually started growing back, my hair. Where it was originally straight and brown, my hair came back curly and almost black. It has since gone back to straight and a dark brown. The day of my transplant was like a rebirth. That was day zero.

Many appointments, tests, biopsies and admissions were had afterwards, as the risk of Graft Versus Host Disease is high. Graft Versus Host Disease, easily put, is, think of an organ transplant where the body can reject the organ, marrow works the opposite, and can reject the body because it is foreign and therefore a disease to be fought. I had 2 serious bouts of GVHD, where my liver and eyesight became very damaged.

Life after cancer

Since this, I have returned to work and life has returned to a relative normality. I see my doctor far less, and have fewer blood tests. I am still on medication for treatment for GVHD, but so far have not relapsed. 

I have spoken at medical conferences, helped raise money for the Leukaemia Foundation, and done a number of radio interviews, as well as helping remodel rooms at the Royal Adelaide Hospital as part of the Adolescent Young Adult Cancer Service.