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.
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
I am so sorry to hear of these details of your Mom in her final days. I had no idea you all went through all that you did. I have fond memories of you and your Mom and I. What a lovely lady and very positive and gracious and fun. These qualities you have as well.
This is a tragic story made worse by the blame heaped on the author by her family. Primarily, this was an error by the doctors, possibly on the part of the hospital and definitely on the part of the primary care physician who should have expected test results and either requested them if they did not arrive or passed them on if they did. The author took in her mother and cared for her despite a demanding career. The lesson I take away from this is that a patient has to be their own advocate. So many errors are made in medical care, unfortunately. A persistent cough is a red flag for lung cancer. Push for a proper diagnosis and don’t be fobbed off with painkillers and guesswork.
Thank you Bree. Yes, we should have pushed more, but the symptoms were also diverse. She wasn’t coughing all the time, for example. And her being an older lady and suffering without telling the family also did not help. I think you are right, if you are in pain you should push. But we did. Clearly, we should have tried multiple doctors earlier. But unfortunately all tests all go to the same hospitals here and those don’t inform the patient, but the doctor. So, it all ended up with the same doctor.
I am so sorry to hear this. I lost my mum to Brain Cancer in May 2018, exactly one year after diagnosis. I hate the doctors for not telling me more, i am withdrawn, no peace. I regret not doing more myself.
if anyone can relate to this please let me know
Rosemary-you have nothing to feel guilty about. You did all you could.
Thank you so much for those kind words!
Seleen- I am so sorry for your loss, and can unfortunately relate all too well.
I lost my beloved mom to brain cancer in November 2017. Even though she was treated by the top expert in my country, I still feel guilt over not doing more. I argued with her doctors, but felt so helpless that I eventually channeled my energy to advocating for her and trying to make the time we had left with each other as meaningful as possible.
I regret not doing more, and I especially regret leaving her for 2.5 weeks (with my father, sister, her 24/7 aid, and hospice nurse, but still) to keep my job and life overseas afloat. I knew she understood and that’s what she would have wanted me to do, and I did it hoping she had months – and not weeks – left, but there is nothing I wish for more than more time with her. I will be eternally grateful that I was able to come back home in time, but I wish I would have never left, and I wish I had done more.
Rosemary- please don’t blame yourself! It sounds like you were actually the one who ultimately did convince your mom to get a second opinion. You did everything you could have done knowing what you knew. I hope that the letter you wrote to the hospital will make a difference, because it’s an unbelievably stupid policy NOT to automatically notify the patient…
I am wishing you both peace of heart and mind.
Hello writergirl. Thank you or your kind comments. I appreciate it!
I am so sorry for the loss of your mother….I lost my mom 2 years ago and I still have regrets, different regrets than yours though….I am an R.N. so I’m very familiar with various signs and symptoms of various diseases….The main thing I want to add here is that you should not feel guilty over not knowing more than you did at the time….You don’t know what you don’t know….Do you know what I mean?….You shouldn’t feel guilty over “not knowing what to do”….In retrospect, everyone would make changes if they knew the outcome of certain situations…Don’t let people lay the blame at your feet either….If they had a problem with your mother’s care, then they also had a responsibility to speak up….It’s always easier to blame someone else than to look at our own culpability….We learn by our mistakes….big and small mistakes….that is life….Be at peace with yourself…..You loved your mother and would have done things differently if you had known more….It’s all about intent….You didn’t “choose” that your mother not get treatment….again, you don’t know what you don’t know….Be at peace with yourself….Guilt is from the devil and will crush the spirit if you let it~
Thank you! I try best I can and remember her with love, not guilt.
It is 2019 and I am just seeing this post. I will share one day but for now just want you to know someone across the world (Texas) is feeling for the first time that someone understands the guilt I am living with. I lost my Mom 3 wks ago and blame myself for not pushing for a different doctor. It is a feeling that is beyond gruesome to the soul. Thank you for your honesty and transparency. Thank you for speaking to me through your words and giving me the hope to one day be relieved of the guilt. Blessings to you from Houston, Texas❤️.
Thanks so much for your heartfelt words, Lauren. I think we all have stories of what we SHOULD have done with medical care for someone we love. I know I certainly do. It seems cheesy, but what’s helped me is trying to keep in mind the fact that we can only live our lives forwards, not backwards — we can only make decisions based on the information we have at the time, not the information we have in hindsight. Do I wish I had made other choices? Sure, I do. But when I look back, I know that I was doing the best I could with the information I had at the time…
I appreciate your words of wisdom. I believe that we are all given an exact date to enter this world and an exact second that we are to exit. Sometimes the medical care given may help extend life, as I experienced over 19 years ago with my Mom. She was in a coma for 7 months (crazy, I know) and survived many battles, including kidney and breast cancer the first time around. We all will leave this world one day, I get that. I look back and wonder if I had her checked regularly as I should have, could we have given her a few more years? Mom loved her grandchildren and loved life. But if I believe what I mentioned about life, I know that her time of exit would still have been 3:30 a.m. on 8/29/19. I truly find comfort and a bit of relief in guilt as I read the comments knowing that I am not alone in this journey. Thank you again for your words…moving forward, one day at a time.
Seven months in a coma is astounding! I can’t even imagine how much time, effort, and compassion it took to care for her — and for yourself! — during that time.
Rosemary – I’m happy I fell upon this post. I’m sorry for your loss. I am battling all of this right now as well. I lost my Mom 9 months ago. She went in on a Sunday (for a cough) and passed away the following Saturday, us finding out she had stage 4 lung Cancer that Wednesday after the sedated her an intubated her. So we really never got to say “goodbye”. My heart breaks. How could this be? I find myself wrestling with lots of questions for the doctors – but you’re exactly right that when you’re in the moment you don’t ask all the questions mostly because we were in shock with the diagnosis! And knowing we were never going to get to speak with her again!
I’m still trying to find peace with it and move forward but I really want to know all the answers to my questions. In the end ….I still won’t have my mom.
Hello Carrie, We are sorry for your loss. It is sad to lose a parent and especially so not getting a chance to say goodbye. Thanks for sharing your story.
I am going through guilt with my terminally ill Mom. I googled unnecessary cancer death and this popped up. Please pray for me and my Mom as we navigate this. We are fire survivors who lost our community and healthcare. Then we moved. My Mom established new Doctors right before Covid-19 and had delayed diagnosis and delayed/improper treatment. She is terminal and a year ago she was fine. I am so maddened by it all that I could scream.
Hello Messina – sorry to hear about your story, these are strange times that we are living in. So much is happening that is beyond our control. I pray for your entire family that you may find strength during this difficult time.
Messina, I can relate in more ways than one. My heart goes out to you because it’s a weight we were never meant to carry. This August will be 2 yrs since my Mom’s passing and it seems as if it was just yesterday and also a million years ago at the same time. I still struggle with replaying the “what ifs” and the “I should’ves” in my mind. Forgive me in advance if I am sharing outside of your beliefs but hope that it will help some way if at all. When my mind goes to the “guilt room” I am reminded that nothing happens without God’s permission. It’s hard to stomach and makes zero sense. But whether I agree with the circumstances or not, it’s out of my control. I’m taken to the scene where Pontius Pilate tells Jesus that he has the authority to release Him or hand Him over to be crucified. Jesus tells him that he can only be given that kind of authority from above. It’s still messed up if I am to be honest. It still makes no sense. Yet, for some weird and off the wall reason, things happen the way they are deemed before we were created. I finally came to the conclusion that no matter how we are to leave this earth, our loved ones will never agree on the reason or the “why this way?” So, love on your mom, and if you do believe that there is much more than what we can see or imagine, you will be reunited one day in a place that is beyond your brain’s capacity to fathom. There has to be. If there was no such hope, why would any of us want to live forever in a perfect place? That sense of joy and desire is instilled in us for a reason. It still sucks, I know. It sucks to be you right now, and for that I am so, so, so sorry. I will be praying for you and your sweet mom. By the way, I think all deaths are unnecessary, hence the reason why it is so hard for us to stomach. Hugs to you from Texas, my friend!!
My story is different, but came up based on a google search. My mom suffered cardiac arrest and it took 11 minutes to revive her. She had brain swelling and was given therapeutic hypothermia. They warmed her up, and did a CT scan right after, and told my family (I was not there) she had severe brain damage and that there was no hope for a recovery, she would be in a vegetative state, so we took her off life support on day 5 and she passed. My mother was 65 years old, we did not get to say goodbye. I had not seen her for a year because of COVID. I later learned that it is possible for people to have a good or decent neurological outcome dispute some brain swelling and myoclonus and a slight fever my mom had. The nurse told me the fever was from brain damage, but I later learned people given the cooling therapy will sometimes develop a fever. I also found out it is recommend to wait 72 hours after rewarming the patient before you do any neurological assessments, but the hospital did my moms right after they warmed her up. I have had others tell my that their neurologist told their families as well they would probably be a vegetative state, but they recovered, and it tended to be mostly younger neurologist that would do that, because they don’t have real hands on experience yet, and my mothers was a younger doctor. Those they used the word probably and my mothers neurologist said she would there was no hope. No MRI was done, I was so upset over taking her off, I did not think to ask for a second opinion from a more experienced doctor, and that haunts me every single day. I loved my mother but I failed her by not asking a second neurologist to look at her and make sure before we removed her. Didn’t she deserve that? It is a very hard thing to live with hoping and praying you did not take time away from her that she should have gotten.
Dear Nonewhere, am so sorry for your loss. It is not unusual that we have stories about what we should have done when it comes to making medical decisions for the people we care about. Keep in mind that, you can only make decisions based on what you know. You did your best.
Hello, I’m so sorry to read your story and so sorry about the loss of your mother. I just lost my mother last month to ovarian cancer. She had been to the doctor on and off for different things but no doctor ever pushed for CT scans or anything like that. Of course we always live with the “what if” and “should of’s” But in the end No one is to blame but the cancer itself. It sounds to me that you were a wonderful daughter, a very loving daughter that did so much for your mother. I’m especially sorry that your family or anyone made you feel guilty. You had absolutely nothing to feel guilty about. How wonderful that you got to live with your mother. Your family should’ve been grateful for that. How wonderful that must have been to have been able to spend time with her like that before her illness. Again so sorry for your loss.
Hello Melissa. I am sorry for your loss. My heart goes out to you and your family. Yes, I am very happy that we lived together. For a while the last months overshadowed that. And i still will also have regrets, but life must go on and I hope that you will also find your equilibrium again. A big virtual hug!
Hi, thank you for this piece. I found it while searching for intersections of lung cancer, caring for a loved one, and feelings of regret/guilt over not acting sooner / noticing earlier signs.
Hi JPR – Am so sorry to you are going through this. It’s understandable to feel regret or guilt when caring for a loved one with cancer. You’re not alone in these feelings, and it’s okay to acknowledge them. Remember to take care of yourself and seek support when needed.