I received a message from a woman we’ll call Jay. To be perfectly honest, in the past year and a half I’ve received dozens if not hundreds of messages from people around the world, wanting to connect and share their own experiences of dealing with grief and loss. Each of us carry our own burdens, struggles, failures and eventually successes as we navigate situations like this, and each of us profess them in our unique way – but what I’ve come to realize, is that as lonely of a struggle grief is, each of us are desperate to feel like we’re not in this alone.
No matter the situation you’ve been dealt, no matter the struggles you’re up against, or the circumstances completely out of your control that you’re now forced to deal with, the one thing in common is that we can find solace in knowing others have experienced deep rooted pain as well. They might not know our own personal journey or what our specific set of circumstances felt like/feels like, but they understand that type of sadness where you can’t get out of bed in the morning, you can’t tell your kids you love them, you can’t feel love for yourself or have any hope for happiness in the future.
I connect with Jay. I can’t possibly know what it feels like to be her and the struggles she’s had to face this past year, but I can understand the overwhelming feeling of sadness and not wanting to feel it anymore. I think some of you can too, which is why (with her blessing) I wanted to share her story. You all have supported me through the darkest hours of my days, and I know Jay will be watching and reading, hoping to feel a glimmer of the support you’ve shown me which has enabled me to press forward and get to this point. I’m so grateful to you all, for giving me a voice and a platform to not only share my struggles and victories along the way, but also now for other people who are just starting off in their own. Keep your tissues handy, this is a hard one to read.
Your story is so similar to mine, all the feelings. I have a lot to figure out but I’m sure we all do. I’m ok, I think? Robotic almost. I think it’s getting worse however.
My husband didn’t die until my baby was 6 months old and I am grateful for that in all of the ways, but at the same time, he died the day he was diagnosed. I was 37 weeks pregnant and the feelings were so intense, it’s hard to even comprehend them now. When my husband was diagnosed, I spent 6 weeks in bed unable to move, that was my grieving. The rest of it all was just an incredible state of panic trying to save his life.
At the hospital when I found out, I started throwing up, peed my pants and ended up admitted myself. I delivered my baby with him on a stretcher next to me. I didn’t care about the pain because everything else hurt so much more. Then the role of the caregiver began as he did chemo. It was worse than anything. He needed me more than my other 3 kids combined. Everyone needed me and I was never enough. I desperately wanted to write because it was flowing from my head so quickly but I wasn’t able, because I spent every single night researching cancer. I had to save my husband because the doctors had given up.
I found clinical trials to try and extra tests to be done. It was a state of non-stop panic and I couldn’t let go for a second. I know now that I did everything I could, there wasn’t an extra moment I missed. He ended up getting sepsis. His second-to-last chemo treatment irritated his bowel and let E. coli into his blood stream. We were on a mini vacation when I decided to pack the car at 8pm and head for home, he wasn’t well.
A 4 hour drive from home and he got worse and worse. Confused and trying to jump from the car in the middle of the highway. I called 911 from the side of the highway with 3 screaming children. I then had to leave my screaming babies with a stranger in the middle of the night, tired and confused at the hospital to be with him. I could hear the kids crying from inside the emergency department, I went to comfort them and get the baby. I came back to my husband. He was telling me he didn’t want to do this. I went to check on the kids again and this is when they sedated him. I think things may have been different if I could have given him my undivided attention. They wouldn’t have had to sedate him. The sedation was the break his body needed and he stopped fighting.
I tried to make beds in my overstuffed minivan for the kids to sleep when finally a manager with the hospital gave me a bed in the ICU. Myself and 3 babies with an ICU bed and stretcher pushed together slept in the room next to my husband. 13 days I spent at that hospital. We left home for 2 days and I was 18 in total.
I came home with him in the passenger seat as a box of ashes.
I don’t talk about (the early days after diagnosis) a lot, because when my baby was a month old I had child protective services at my door. I’m extremely angry about it. It was a joke, the stress it created for my husband and I. They offered nothing and this was an attack on me as a mother. A better mother than most I know. I was depressed and I was desperate for help, asking everyone. Begging for help but there was nothing. No support or counselors, and I made the wrong comment to someone and they called CPS.
Two girls my age sat in my living room and interviewed my husband and I about all of these personal things and I just wanted to scream, “he’s fucking dying!!!” I wanted to tell them to fuck off so badly but of course I was terrified of losing my children. The case was closed immediately but I reopened it because I wanted to hold them to their word of being there to help families. Of course there was nothing they could offer because our household income was too high. There was some child support group with an 8 month waiting list....my husband was dead by then.
I went to some cancer support groups but they were all 50 year old women taking care of their elderly parents. No one got it. No one understand that lonely cancer journey. Cancer is fucking awful. I didn’t understand before.
When he died it was all over. I haven’t grieved him much since his death, it feels weird. My biggest problem is that I feel it was very traumatic to take care of all my children, one being a newborn and then additionally be a caregiver for him. It was absolutely an impossible task but I did it and I’m so angry about it. I’m actually going to talk to my doctor about PTSD next week, not sure if that’s a possibility or not but I feel very affected by certain events that I had to get all of my children through, and my husband. My children saw a lot and I am feeling pain about that too. Otherwise I think I’m doing ok.
I am so happy that my husband got to meet my youngest and I can’t imagine the feelings of him never holding her. Ughhh just thinking of this makes me so emotional. I am so angry for cancer though because my husband was not the person I married when he died, it slowly stole him and his mind. I feel like none of my children had the real and amazing man that he was except for my son for the first year. His mood changes were absolutely the first symptom, however he ignored the subtleties and of course we were new parents, new jobs, 3 babies in 3 years. Tired would be normal. I just look back now and see things and hate it all. My husband was in the hospital on a Friday, my baby conveniently came on Saturday and all three of us were back in the hospital on Monday. I carried a newborn around the hospital for 6 months and it was awful. Everyone fussing about a little baby while I was exploding on the inside. NO ITS NOT WONDERFUL TO SEE A BABY AT CHEMO! Wtf is wrong with you people??!!! I was depressed to a level I can’t imagine now. I was always super mom and now I didn’t even want my kids. I quit my career in Texas and moved home to Canada. No job and 3 babies, I’m a stay at home mom and now I need a plan. My world, everything has changed. Everything is gone. We JUST bought a house that I am no longer qualified to carry the mortgage on. I know I’ll be ok because I’m smart and strong as hell but I just wish this wasn’t what I was facing ahead.
It’s interesting you speak about writing. I’m the same, never wrote, never had any desire to and don’t think I’m very good. I’m sitting in front of a WordPress dashboard right now and trying to figure it all out.
Oh I’ve just said so much that I haven’t said out loud to anyone. It’s either been too painful to think about (The whole highway/ambulance/emergency room scene haunts me) or no one gets it.
Everyone sees me and thinks I’m doing great. My mother and mother in law are always telling people I’m so strong and I’m coping so well. So far from the truth on the inside. I just don’t have a choice because of my kids.
Sorry this turned into a massive message. I will follow you. And check it out.
Thank you for taking the time to read, and please feel free to leave words of encouragement for Jay who has no choice but to be strong and get through this, but who I know would benefit dearly from the love and support of all of you. <3