Struggling with grief and anxiety ten years on. Coping strategies?
Hello everybody. I'm new here, and I thought I'd like to share my story.
I'll admit that I do not remember all that much, and I don't know if I wish I did.
I was just another nine year old. My father worked overseas a lot at the time and I would only see him once or twice a year. It was thus my mother with whom I spent most of my time.
One day, at the ripe old age of 48, she complained to me of "stomach cramps" - that is the only symptom I remember. She went to a clinic where the doctor detected hepatomegaly and referred her to the hospital, to which I tagged along. She underwent an ultrasound, and suddenly the one doctor in the room because a team of doctors crowding around the screen, and the next thing I remember is sitting in the doctor's room hearing "It's probably cancer." He then proceeded to discuss the details of some surgery (?) and I was so scared because cancer sounded bad, and surgery sounded bad, so I started crying then and there, at which point my mother starting crying herself.
The next couple of months were a blur. She underwent a major surgery, the details of which I do not know. I do remember her telling me she had a high risk of developing diabetes post surgery. All I knew was that they had taken out as much "disease" as they could, and had sent it for testing.
She had to remain in the hospital for quite some time afterwards. I was staying over with some relatives at the time, and every day I would call my mother in the hospital and we would talk for what felt like hours about all sorts of random things. Eventually she got discharged and I was ecstatic - I could go home and be with my mother again.
She came home with a drain in her side - whether or not she had other tubes I do not remember. There was a bag attached to the drain and she would note down the amount of fluid collected and its color every day in a little notebook.
I remember anxiously asking her whether or not the lab results sent for testing were "normal" every day after school. She always just smiled at me and told me she had not yet gotten the results back. One afternoon, we received a phone call at home, and I heard her saying, "Are you sure? So it's confirmed?" and then she quietly hung up the phone and withdrew into her room for the rest of the day. The next day, I asked her if she got any lab results back, and she responded with the same smile and the same "not yet".
Over the next two months, she had frequent outpatient hospital visits. She ate less and less food. I remember her preparing a meal for the both of us, and after dinner her plate would barely have two bites taken out of it while mine was empty. I hated it, it terrified me that she wouldn't eat anymore. I slowly started eating less myself, because it felt so wrong eating a lot while she could no longer enjoy food.
She slept more and more. She couldn't drop me off at school anymore and I had to go with our neighbors. One day I came home from school and saw my aunty - her sister - giving her a haircut. Her long, long hair cut to just below her ears. She explained that it was getting too tiring taking care of her long hair.
At this point her pain started becoming more and more severe. I would plead with her to go to the hospital, and she always said she did not want to because they would admit her and she just wanted to stay home and "spend as much time as I can with you". She would take the oral pain meds for as long as she could tolerate the pain. She spent most of her days writing letters and crying silently over them.
My father was finally able to come home - he had to leave his job because he couldn't get the permission to go home. Soon enough, the pain became too much and she had to get admitted. Once in the hospital, I don't remember ever seeing her in pain. I like to believe they controlled it well. In the early days of the hospital stay we would just spend time together during visiting hours. Eventually she was less and less awake. One day I eagerly walked into her room after school and she just blankly looked at me and said, "Who are you? You sound familiar.."
I believe that was the last thing she ever told me.
At around 3 in the morning a few days later, I was awakened by my relatives with whom I was residing once again. I then realized that my father was there too. But then who was with my mother? He took me home and explained to me that she had gone to Heaven.
That was ten years ago today.
Even though a decade has passed, I miss her everyday. She was truly the sweetest, most loving mother I could have ever asked for. She hid her diagnosis from me, I assume to protect me, but I believe I knew all along.
As I grew older I came to learn more of what actually happened. She had stage IV pancreatic cancer. She chose surgery alone for treatment - chemo in my country is not free, and we were not able to afford it. Thus the hospital visits were mainly for the control of her pain, and her diabetes (which I never knew she developed post surgery). She survived a total of 4 months from diagnosis.
I have always and will always advocate for awareness and funding of this terrible disease. My mother deserved more, and so does each and everybody fighting this.
I developed terrible, terrible anxiety soon after she passed, and I'm suffering from it to this day, at 20 years old. My anxiety revolves around hospitals and disease and death, and I have lost so much to it. I get flashbacks and nightmares regularly. I still am unable to speak of her without crying. Can any long-term grievers please share how they're doing, and how they're dealing with it all? I would love to hear from someone.
I can only hope that one day nobody will have to go through cancer anymore.
Love to all.
Thank you for that wonderful, though heart-breaking story about your mother. I had a similar experience with my grandmother when I was only 8 years old. She too, left this Earth far too quickly, and I always regretted not getting to know her better. She died of lung cancer, and back in those days, people didn't talk about it--they had the mindset of "the less you know about those things, the better."
As for coping, I can only offer this. Your mother obviously had dreams for you, her child. She probably dreamed of you having a happy life, perhaps with a career, a family, and loving children of your own. She probably dreamed of being around you for a long time, watching you grow and experience life--a long and full life. I doubt she would've wanted you to dwell on her pain, on her circumstances. That's probably why she tried to protect you from some of the details. It was not her plan to drag you through such pain, and I would expect that while you cherish her memory, she would want you to seek happiness, and carry her goodness with you.
Rather than run from it, why not join a cancer survivors' coping group? Volunteer to sit with cancer patients, or to help raise money for research. It might be a case of not evading what frightens you, but rather facing it head on. The more you learn about it, the more you might be equipped to understand what your mother experienced.
Age 50 Male
early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
3/7/13 - CT-scan inconclusive, endoscopy negative
3/9/13 - FNA of neck mass
3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
3/25/13 - CT-PET scan reveals no other active tumors
3/26/13 - work/up for IMRT
4/1/13 - W1, D1 of weekly cetuximab
4/8/13 - W1, D1 of IMRT
5/20/13 - complete 8 week regimen of weekly cetuximab
5/24/13 - Complete 35-day regimen of daily IMRT
mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
Spring 2014 - No signs of cancer
Spring 2015 - No cancer
Spring 2016 - No cancer