Aksel Kjær Jensen

How do I find the words? I can’t seem to move from this spot until I do... 

My dad has always been in very good shape. He’s had four sick days in his life and that was for a broken leg. He’s played soccer weekly since he was a kid and continued until a ligament tear stopped him from playing last year. He worked out almost everyday (often with a personal trainer) and was in some of the best shape of his life at age 60. He was strong. Shortly after he turned 58 he had a fitness check that put his ‘body age’ at 38. He was diligent and disciplined about maintaining his healthy quality of life – it would benefit him now and as a very old man. I mention all this because what comes next does not fit this picture. 

In late December Dad had stomach pains, on and off. That’s how it started. Occasional stomach pains. In January he was tested and treated with a two week round of antibiotics for what the doctor thought could be a parasite he might have caught on a recent holiday to Barbados. A second round of antibiotics also failed to take care of it and he refused a third round until he could be checked for other possibilities. That weekend he had what turned out to be a blood clot below his knee. After a week of daily outpatient treatment and check ups at the hospital, it was decided that he could easily continue treatment himself with basic blood thinners and therefore be free to travel. My parents had their annual trip to Palm Springs waiting, but because Dad was not a candidate for blood clots, it didn’t sit well with him and he wanted to make sure there was a handle on everything before they made the long drive south. When his stomach pains worsened a week later, he was sent for a CT scan, which (after an agonizing day at the hospital) revealed that he had terminal cancer. Right out of the blue he was handed a death sentence. The follow up with a specialist five days later, on March 20th 2012, confirmed that Dad had stage four pancreatic cancer. Chemo could at best relieve some of his symptoms, but he’d have to speak to an oncologist at BC Cancer about that and the first available appointment was in three weeks time. Dad was given months maybe weeks to live. 

We were stunned. And our family was absolutely devastated. 

Jan, Thor and I flew home as soon as we got the green light and Thor’s passport sorted out. We arrived home April 6th. It felt so desperately short, the time we had left with him. 

It was clear to see that Dad had lost weight but he definitely looked himself. Three days after we’d arrived, April 9th, was the first birthday I’d had at home with family since I’d moved to Copenhagen five years earlier. Dad joined us that afternoon for cake and a song. He’d been in excruciating pain all day but not wanting to ruin the day (bless him) he hadn’t made apparent how bad it was. Dad never complained. Ever. He didn’t want us to worry. Or maybe in my fear, I hadn’t wanted to see it. By evening there was no denying that the pain had become unbearable. Eventually he had to give in to our pleas to call the paramedics. Watching him climb into that ambulance split my heart right in two. We all cried, even though he asked us not to. 

Dad spent two agonizing nights in emergency and was scanned again. The doctors where shocked at the rate at which his cancer had spread over “just three months”. Mom had to correct them: his first scan had been taken 3 weeks ago. Everything was going insanely quickly, for us and for the doctors. His prognosis, sadly, was changed to weeks or days. Probably days. Again, we were devastated. Dad was transferred to palliative care, where the objective was to control his pain and stabilize his medication so that we could bring him home to die. It was horrible, what Dad had to endure. We were with him 24 hours a day (Mom ”slept” at the hospital every night in the end to make sure Dad suffered as little as possible) and while we did everything we could think of to make a difference, we were helpless. There was never a safe window for bringing him home, sadly. Somehow he was able to stay himself to the very end: he called his own shots, he gave us courage (even though it should have been the other way around) and he was respectful of the staff at the hospital – even when they made mistakes (which to their credit were few and far between. For the most part they were absolutely wonderful, the palliative care team). Weeks earlier, when Dad had been told that he was going to die, he said that if he was going down, he was going to go down with dignity. And he did. April 18th, 2012, four months after he had had those first stomach pains, just four weeks after he was diagnosed, at the age of just 60, my dear dad died. 

Three weeks on and I still find it hard to say those words out loud. Three weeks on and I still can’t quite grasp that Dad (always such a strong man) died of such a merciless disease. We all thought he’d live to be at least 90. What haven’t we begged the universe to do, to make that so. The sorrow is potentially bottomless, and I need to understand what happened. It still feels like one massive mistake and it just isn’t right. 

Pancreatic cancer is extraordinarily lethal. It has the lowest 5 year survival rate of any cancer and is one of the most painful. Once you have symptoms – stomach ache, lower back pain, blood clots, or loss of appetite – it’s too late. Doctors can’t always explain why one person gets pancreatic cancer and another doesn’t. Up until the month before his death, Dad still had plans to golf in Palm Springs. My parents still planned to come meet their new grandson in Copenhagen in May. Everything was booked. Dad played golf (with difficulty) for the last time two weeks before he died. None of us had any idea, and we’re still trying to get a handle on how quickly everything happened. 

Pancreatic Cancer claims just as many lives each year as breast and prostate cancer, yet research for a cure and/or early detection remains seriously underfunded – in Canada it receives less than 1% of research and charitable funding*. In Denmark there isn’t even a charitable fund specific to pancreatic cancer. We’re told that part of the reason the percentage is so low is that there are no survivors to fight the cause*. That is so very sad to me. As a direct result of low funding, there has not been any been any progress made in detection, treatment or a cure in 40 years. This frustrates me beyond belief to know. No one given this diagnosis is armed for any kind of battle. 

Dad was ambushed. Plain and Simple. There was no “battle with cancer” that he “lost”. A battle implies some kind of a chance (even a tiny one) but Dad wasn’t given one. Dad loved his life and reveled in finally having time to travel the world and savour some well deserved joys after all those decades of hard work and sacrifice (I’ve never met anyone who’ve worked harder or with more integrity than my parents). Instead, he experienced just two years of his retirement and was cheated out of the rest of it. Dad deserved so much better. 

Out of respect for my dad’s collected reaction to all of this (he didn’t waste his last weeks being angry) I’ve had to shelve my fury about the unfairness of how it ended for him. And for us. Mom was robbed of her best friend and the love of her life, my sisters and I our beloved dad. I have to shelve my disappointment over the way the BC Cancer Society wouldn’t speak to us until Dad had had that first appointment with the oncologist (we couldn’t even get the dietary advice we hoped could prevent us from preparing food for him that hurt him). When you’re dying of stage four pancreatic cancer, three weeks is a long time. A day is a long time. Dad died two days before his appointment. From the day of his diagnosis, we were left to fend for ourselves. We researched frantically – and came up with so many more questions than we did answers. Not once did we find an answer to why. 

Why this wonderful man? 

I am grateful for the few days my son and my dad had together, and for knowing that Thor got to have a place in Dad’s heart before he had to go. I am grateful that we had the chance to say our goodbyes, even though there was never any doubt about how much he loved us or how proud we made him feel. I am grateful for my mom, my sisters, and for my own little family – they are an incredible source of strength. My dad has always meant the world to me and I still can’t believe I won’t ever be able to call home to hear his voice again.

I can’t imagine the world without him – not any time soon, not even now.

- Marianne Jensen -