In 2009, my Mom died of cancer. It went quite quick in the end, but that is because we were unaware that she had cancer. Turns out, that was because of a simple mistake. And without that mistake, she would still be alive.
After my father died in 2000, my mom moved in with me. It was great to have her. She had a dog and I had just gotten my dog, Douglas. When my boyfriend and I were working or traveling for work, she took care of the doggies and we all enjoyed spending time together when we were home. Her favorite thing was to watch tele-novellas with the doggie on the couch. Not a bad life at all.
I traveled a lot for my job at Microsoft and she took care of my dog along with hers when I was gone cornea transplant, which meant that my mom was on blood thinners. So, she was at the doctor’s at least once per week for checkups. We lived close to her doctor and a hospital so that it was easy for her.
When she started getting pains in her side, she mentioned it to the doctor, and he suspected a bruised rib. She got some painkillers, but when it did not go away, she tried again with her doctor. He prescribed something else and scheduled a lung puncture. Over the next months, my mom had more and more complaints. A cough, pain in different places, difficulty breathing…
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 about things– so it was only when 10 months later and she kept needing stronger pain killers, that she finally caved and let me take her to another doctor for a second opinion.
The new doctor sent her to the hospital for another lung puncture test. We live in a small town in Switzerland, 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. At that time we could have operated, now it is too late. You probably have 6 months or less.”
The hospital policy is to send a letter to the doctor. But no one had told us, the family.
No one knows what happened to the letter. We don’t know if he didn’t get the letter, or if his office did and lost it. Still, they should have informed us as well. In the very least with a letter saying the results were back and to contact them.
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.
Four gruesome months followed, of splitting home care with my sister and her husband; four months of watching my mother waste away; four months of balancing a full-time 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 250 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 gotten a second opinion sooner.” Needless to say that marriage didn’t last.
For four months, we focused on the practical stuff. Everything was about care and logistics – it was about what needed to be done this week, today, this hour, this minute. Life becomes a to-do list.
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. But at least in our circumstances, there were no good memories to be made anymore. Instead there were struggles, treatments, hallucinations, and the horrors of taking care of a deteriorating body. And endless tiredness.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 before. If only we would have operated. If only…
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 it was all over and my mom passed, there was nowhere to go to answer the ‘why this happened’. In Europe, there really is no gain from suing. No chance for retribution. I don’t think suing would have made me feel any better anyhow.
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. Now that I have a chronic condition, I have noticed that they indeed made that change. I now get copies of all communication to my doctor.
No one, including me, took care of my mental health during, or after what happened. 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. 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.