Rosy and her mom (with doggies!)

Almost nine years ago, my mom died of cancer — and it could totally have been avoided.

After my father died in 2000, my mom moved in with me. We’d always been very close. I travelled a lot for my job at Microsoft and she took care of my dog along with hers when I was gone. When I was home, we spent lots of time together, often just sitting on the couch with the doggies watching the tele-novellas she loved so much. Life was pretty good. After a cornea transplant, my mom needed blood thinners, which meant she was at the doctor’s every second day for a quick blood checkup. For convenience, we moved into a place in walking distance of a doctor, a hospital and a pharmacy.

When she complained about pain in her upper side, her doctor suspected a bruised rib and sent her to the hospital for an x-ray to check if her lung had been punctured. He then prescribed a few painkillers and upped her checkups. Over the next months, she had more and more issues – a cold, coughing, more pain in different places. Her primary care doctor treated her concerns. After all, she was in his office a lot anyways.

My mom was one of those old-school people – the ones that don’t complain – so it wasn’t until about 10 months later, when she kept needing stronger pain killers, that I pushed her to get a second opinion. I still had my old primary care doctor from before we moved – because I hadn’t been sick, had seen no reason to switch.

After the first examination, my doctor sent her to the hospital for another lung puncture test. We live in a small town in Switzerland, and our entire state is 55,000 people, so there is only one hospital. Imagine our shock when my doctor called us a day later and told us what the hospital had said: “We don’t understand; we told you a year ago that you had a small tumor in your lung and recommended to operate. Now it is as big as a tennis ball.”

No one had told us, the family.

The hospital policy is to send a letter to the doctor and the doctor never told us. We don’t know if he didn’t get the letter, or if his office did and lost it. But regardless of that, no one informed us. It took a second opinion that we got much too late, to push for more action.

By the time we learned of her diagnosis, the cancer had spread and surgery was no longer an option. There was nothing left to do but manage the pain and buy as much time as possible.

That time turned out to be four months. Four gruesome months; four months of splitting home care with my sister and her husband; four months of watching my mother waste away; four months of balancing a fulltime job with the demands of caregiving, now 300 miles away at my sister’s home. Microsoft was very understanding, but it was still challenging working in the office Monday-Wednesday, then drive 300 miles to take over care from my sister until Sunday, and then drive back home in time to start the next work-week.

Caring for a terminally ill patient is never easy. But care wasn’t the hardest part. It wasn’t the long hours, either. The hardest part was that from the moment we found out, my mom was a different person. To this day, I don’t know if she blamed me, but I know I did. And the rest of my family did, too, although my sister was the only one to say it out loud.

My husband took my sister’s side. In his words: “She’s got a point. You could have switched doctors sooner.”

When reaching a loved one’s inevitable passing, you focus on the practical stuff. After my mom’s diagnosis, it became all about the care and the logistics – it was about what needed to be done this week, today, this hour, this minute. After death, it remains about taking care of things – the funeral, the financials, and all other details. Life becomes a to-do list.

Instead of these practical concerns, you would think we would try to get as much quality time as possible. But at least in our circumstances, there were no good memories to be made anymore. Instead there were struggles not to fight with sibblings, tensions, the horrors of taking care of a deteriorating body and endless tiredness.

Things moved fast and my last good memory of my mom is on the day of the diagnosis. We went for a coffee and a dog walk, and decided we would try to make the best out of the situation. Little did we know that already on the next day, the pain and the morphine and the reality of my mom’s condition and the mistakes that allowed it to get out of hand meant that the time for enjoyment – of ourselves and our relationship – was past. No more conversations or evenings with the dogs on the couch watching silly tele-novellas.

What I was left with was regret and guilt.

If only we had known a year ago, we would have operated and she might still be here today. It took me six years before I could look at a photo of her. I still cannot look at photos taken after that diagnosis day.

Once the to-do’s were done, I did nothing.

And there was nowhere to go to answer the ‘why this happened’. We thought about sueing the doctors, but in Europe, there really is no gain from that. We also didn’t know who made the mistake. In the end, I did write a letter to the hospital asking them to change their policy and not just inform the doctor but also inform the family directly in such situations. I don’t know if they did anything with the letter. And I don’t think sueing would have made me feel any better.

No one, including me, took care of my mental health. I didn’t get help to deal with my grief. Instead, I went back to work. With a vengeance. I threw myself into a new job, working 18-hour days, seven days a week for almost eight years in a row. I ended my marriage and I moved to a new country to avoid memories that were connected with the places I knew, the places I loved. I didn’t speak to my family for a year. It took me 6 years to even hang up family pictures in my new place.

And it’s taken me another 3 years to finally write about it. The experience was a wake-up call that forced me to look at myself and I ended up making a lot of positive changes. But all of these took an enourmous amount of time. Apart from the grieving process, I was also beaten by how this had happened and the endless question: what if?

I will never lose the regret. But I hope to one day get over the guilt.

Rosemary Lokhorst
Technology entrepreneur and game producer. Rosy concentrates on working in social and environmental change and philanthropic projects. She uses her ‘techspertise’ to produce content she is passionate about, focusing on impact messaging in entertainment and gaming. She regularly blogs and writes screenplays. She is an investor and mentors young entrepreneurs. More info on: www.lokhorst.ch
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