I learnt many of these lessons early in my adult life …
When I first saw him, he was laughing and clowning around with a bunch of older guys on the beach in front of where I was sitting, I thought he looked amazing, he was eighteen, with shoulder length wild hair, a safety pin dangled from his ear lobe, his arms were chiselled and I could see the glimpse of a tattoo. In those days tattoos were not as common as they are now, and it usually meant that the wearer was a bit of a rebel.
I was straight laced, full of morals and ideals and he was someone the movies refer to as from the wrong side of the tracks but somehow we hooked up and became inseparable. Little miss goody two shoes soon became exposed to a different lifestyle, one where poverty was just a pay cheque away and where the law was disrespected, the police were referred to as ‘Wallopers’ probably from personal experience.
My mothers stress levels were at an all time high, but he had a kind nature and a good heart; his mum was the centre or his world along with his nine brothers and sisters.
When I finished school, I made the decision not to go off to university ( I couldn’t possibly leave my man) and I was fortunate to be employed by a family owned pharmacy and qualified as a dispensary technician. This job was fantastic as it challenged me intellectually; I learnt to mix up ointments and potions and quickly mastered the dispensing of tablets and capsules. D was working as a fleet serviceman at the time; we had good mates and were happy.
Know and live your passion
Dream big and give it your all
D’s passion was speedway, he had a stockcar which he spent many hours pouring over with welders and sledgehammers trying to fix the dents as cheaply as possible. There was nothing more exciting than being in the pits during a speedway meeting, everyone rushing to get their vehicles primed for action, the noise and smell of engines being revved endlessly, support crews rushing to the best vantage points, eating hotdogs topped off by the inevitable reliving of every race over a beer at the end of the night. During the season, Saturday nights saw us at the track.
We got married when I was nineteen (sounds ridiculously young now) on the 24th February at a cute county church followed by lunch back to Mum and Dads lifestyle block where a marquee and fabulous food, all self-catered by my Mum, awaited us. It was a beautiful day filled with tears and laughter then off to the speedway to race that night!!. You have to get your priorities right.
Deal with the hard stuff
Positivity can move mountains
I don’t remember the exact date that it all changed, but it must have been late September or early October, when one morning D fainted. He had been standing having a wee and collapsed into the bath. He came to, felt fine, got up and went off to work as usual. A few nights prior to this we had been having a kick around with some mates with a soccer ball and he had stopped and said he needed a rest, we laughed at him and commented on how unfit he was. Those two inconspicuous things may have gone unnoticed if I hadn’t mentioned it to my work colleagues that morning that he had fainted. They convinced me to get him to see the family doctor, who just happened to have an appointment that afternoon. To us that appointment was simple enough, the doctor asked him to poke out his tongue then said I think we will take some blood tests.
At around nine o’clock that night, there was a knock on our flat’s front door, it was our doctor and he brought crim news, we were to fly to Auckland the next day as D had been diagnosed with Leukemia and Auckland had the specialised haematology clinic. Thankfully Mum was working next door so she was on hand as soon as the doctor left!
Acute myeloid leukemia (AML) is a cancer of the myeloid line of blood cells, characterized by the rapid growth of abnormal cells that build up in the bone marrow and blood and interfere with normal blood cells. Symptoms may include feeling tired, shortness of breath, easy bruising and bleeding, and increased risk of infection. Occasionally, spread may occur to the brain, skin, or gums. As an acute leukemia, AML progresses rapidly and is typically fatal within weeks or months if left untreated.Wikipedia
The next memory I have is trying to find our way down long corridors of Auckland hospital, the memories feel dark and cold, like that of a bad dream. As soon as we arrived D received a blood transfusion and underwent the first of many painful bone marrow aspirations followed by surgery to have a central line put in.
The news was not great, but the consultants were honest and answered all of our questions but the shocks just kept coming.
Lucky you went to the doctor, you could have been dead within a few days if you hadn’t sought treatment. Acute Myeloid Leukaemia! The odds of being alive in five years were slim, bone marrow replacement was a possibility. First things first, we need to treat it with everything we can in repetitive treatments until we can get you into remission, then we can think about the future.
There we were two newly married young adults, 20 and 23, away from all our loved ones and friends being told the most unbelievable news. What did we do? Cry of course, we weep wrapped in each others arms until there were no more tears. Then we started remembering the positive snippets of information, the percentage of getting into remission, the percentage of being around in 12 months and 5 years, yes they were low but they weren’t zero so lets work on being one of those numbers! That is pretty much how we rolled from then on, any bad news was purged by tears followed up with positivity, looking at the positive percentages and lots of love and support.
The cavalry arrived in the form of angels within the Auckland Haematology department, they helped us battle, poisoning every cell within D’s body with the intent to annihilate the badness that was killing the goodness within him. The drugs were toxic and his body was ravaged, while he suffered, the team of angels did everything to make his journey as bearable as possible.
I became his personal nurse, spending every possible hour at his side. Having spent the last few years immersed in the world of pharmaceuticals I soon became an expert in the drugs that were being administered and knew the names, dose and how often they were required. Spending all day in the ward also meant that I was able to assist in his cares, the nurses showed me how to clean his central line, change the blood and platelet bags during transfusions, how to automate the flow of the drip when he received fluids and antibiotics, I was the queen of the sluice room as well (no details required!!).
Someone is always worse off than you
The staff were fantastic and we met lots of amazing patients and their loved ones all going through different treatments, the haemophiliac patients and cancer patients were the most regular ones. We felt lucky as we spent all our time together whereas other patients who had other commitments or children had to juggle their visits. Cancer patients, if well enough could leave the hospital between treatments whilst the body recovered enough to be attacked again, if you lived out of town you went to the Domain Lodge which was specifically designed to cater for cancer patients and their family. We remained in Auckland for a number of months before we could go home so each time we got to stay at the Domain Lodge it was like Christmas, we saw it as if we were on our way towards being one of the lucky ones.
One time when we were home, D spiked a temperature, it hit quickly and as his immune system was so weak he was shaking madly whilst I was driving at speed to the hospital with hazard lights going (where’s a cop when you need one). That must have been around April as I remember he spent his birthday in hospital. I gave him, what some criticised me for being the dumbest birthday present ever, but I knew it was the best present ever, some fireproof overalls for when he could drive the stockcar! Hope is a powerful thing.
Our life now revolved around treatments, we were eventually lucky enough to hear the fantastic news of ‘remission’ at which time family and friends were all looking to become potential bone marrow donors but it was not to be, on our next trip to Auckland they advised us that the leukemia was back. The consultants were there with their facts, our chances of bone marrow replacement were now off the table, we were not going to be one of those that would make the 5 year percentage, we were not likely to make any more positive percentages.
We continued in the manner that had worked for us to date, cry then think positively. We had given it everything and there was no more to give, D chose to enjoy the remainder of his time rather than put his body through that again needlessly.
Family (and friends) are everything
We said our goodbyes to the Auckland angels and went back to Mum and Dads lifestyle block and lived whilst preparing for death. Cancer is a funny thing when it comes to friends, often strangers give you the most unexpected joy, the minister that married us sent us a letter each week with local news clippings and positivity. Friends and family are exactly what you need around you and D was lucky enough to have an amazing friend P who supported his journey from the start, he was one of the first visitors in Auckland and he bought with him a woolrest under blanket (hugely expensive for a young single bloke at the time) to make his hospital bed comfortable, he spent time with us and made us laugh. We had fabulous support from family in particular my Mum and Dad but D missed the rest of his friends, two in particular who before he was sick had been inseparable but just didn’t front when he was sick. I remember when they finally found the strength to see D he was nearing the end of his journey, he sat their listening to what they had been up to in their lives, one of them had just purchased their first house and D joking said to them ‘that would have been more expensive than my last purchase, I bought a plot on the hill at the cemetery where I’m going to buried after I’m cremated’, he burst out laughing as his friends faces turned white. They were not strangers after that.
Love with all your heart
Don’t leave anything unsaid
We were home and took each day as it came, the house was happy and we ensured D’s every wish was granted. I was grateful for the months spent learning to care for him, and especially thankful for his central line along with my knowledge of medications which meant that I could administer the pain relief that he needed until the end. He died in our bed whilst sleeping on the night of June 13th, his body was a skeletal shell, weighing only 44.45 kg (7 stone) from his previous 82.55kg (13 stone) muscular frame, but his heart was full and he knew love.
The morning of his funeral I turned up the stereo and danced around to his favourite music, Mum thought I was crazy but I was celebrating that he was no longer suffering, eight months from diagnosis to death, he was at peace.
D’s life was short, he died at 24, but he had lived a full life and was loved by many, especially his mother and brothers and sisters. He had a twinkle in his eye, he was kind and he loved and adored me.
His passion was speedway and the stockcar that he had worked so hard on. His favourite present were the fireproof overalls that he got for his last birthday but never wore. He would be incredibly proud of the fact that thirty six years after his death they are still racing for his Memorial Trophy at the local speedway (thanks guys!!)