Almost 5 years and still so hurt

[rakogi]

I can't help but feel like my mom should be here! She was diagnosed with a blood disorder in 2013 and soon after we found out it was very serious. She had "pre leukemia". The specialist said her numbers indicated she had about a year left! This was shocking to us, as the first Dr. did not explain things this way and she looked very healthy. We were given options but basically a stem cell (bone marrow) transplant was recommended. 

My mom had 2 siblings but she had a different father, so they were ruled out as donors. I, as her one and only child would be her only option. She decided to go ahead with the procedure. To this day I regret it and torture myself with the "what ifs". Instead of the one year the Dr. had given her, she ended up living just 6 months.  The transplant was awful. Total body irradiation, chemo, hair loss, excruciating bone marrow biopsies, test after test and poor quality of life. I had to go through quite a lot as a donor also. I had to inject myself with medication to produce more stem cells, be hooked up to an apherisis machine connected to a huge vein in my neck. I had to donate 3 times because it just wasn't working. Also, had to take care of my mom, daughter and husband. It was tough but nothing compared to what she went through.

One day after her 53rd birthday, she called me and said she had a fever. Off to the ER. Three weeks later after dialysis, intubation and countless other things I had to decide to take her off of life support. She had suffered so much! I wish we would have just dealt with the disease itself instead of this Frankenstein treatment that ended up killing her. 

I have more moments of peace than I used to but it is still tbe hardest thing Ive been through. She was my best friend. 

[nuvar]

Dear Rakogi,

I am sorry for your loss and your prolonged hurt and guilt. Im in a similar situation. My mum was diagnosed with lung cancer and we were not given full information including staging, life expectancy (with or without surgery), treatment options. We were just rushed into making a decision for surgery.

In the end my mum suffered for 3 months in ICU in the worst way possible - i was in a new job but my boss was good enough to let me take time away and I slept outside for 2 months. Prior to surgery, we had 6 months... you dont know how much i resonate with your post despite some differences. Later we found out it was stage 3A but all was too late. She would have lived a good 1 yr with targeted therapy then deteriorated afterwards, highly likely to live past 1.5 yrs due to the fighter she was. We walked for 3-4 hours when she was taking medication. Without surgery we would have gotten the 1-2 or even 3 or more years that I wanted. We were deceived into doing something that has no benefits.

It has been roughly 8 months now.

The other thing that makes me resonate with you is that we are both only childs. And my dad has Alzheimers. I had planned a lot of things to happen in this 5 yrs. Now I've lost the zeal, the interest and zest in life too. My relatives blame me for what happened. I wouldnt want to digress in your thread (but you can read mine if you dont mind the WOT). Now Im basically living on without much point. I did tell my mum I would fulfill what I told her and I am trying. Im also seeking redress/compensation with the hospital. Too many things I have to juggle - housework, father's medications/med appts, thinking of the future, thinking of hiring a maid/sending dad to a home, the guilt that I cant erase, work, finances and everything is weighing down. 

The guilt and sadness part is the toughest. My mum was my best friend too, my soul mate. She helped me with all my personal problems and issues and I didnt manage to help/save her. I feel so guilty for making her suffer yet no one is on my side nor understands. I am lost and confused and wonder if I will ever get compensation and what help would it do. I would probably feel very lost afterwards as well.

I dont know what to say but I hope u live on and be strong for your family that's what your mum would have wanted. I think I would have wanted some family support but now I have none. I just have to eke on or find some way, at least till I fulfill my promises

Your mum would have wanted you to live on. She's proud of you for making it so far, doing everything you could to try to save her and salvage the situation. She knows and will continue to bless you. As I always say, her legacy lives on in you. As you probably already know, grief works in different ways for everyone.

Have you ever tried talking to anyone regarding this? I feel it does help, at least once in a while. Take care!

[reader]

Dear rakogi,

I think many of us can identify with how you are feeling. I think the pain and sorrow is very deep. You did so much to try and help your mom and of course, you wanted another outcome. Talking to one counsellor she said it could take anywhere from 18 months to 10 years to process the grief. We are all so different.

Year three for me and there are still days where I cry for my father and what I could have done and should have done differently for him. Like Nuvar, I, too, think if only... and then my father would still be here. He would see his second grandchild grow up.

Take your time and know that we are all in this together. Keep writing and talking it out with us.

Thinking of you.