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Lost Husband to Lung Cancer - October 17

WatchaGonnaDo's picture
WatchaGonnaDo
Posts: 8
Joined: Sep 2017

First off, I don't like to write. I'd rather talk. Talking is how I process things. But talking generally requires a listener, and I'm running out of those. When it comes to loss, I think friends should have a label that says "use sparingly." I understand, they run out of patience before I lose my need for them to listen, mostly silently, while I talk.

I know this because I've been here before, sort of. My husband and I lost our only son, 7 days old, 27 years ago. I was a young 27 year old (remember when 27 felt old?) and believed born babies didn't die. Of course I knew about miscarriages, but thought once you made it out of that danger zone, the baby lived no matter what. Couldn't doctors fix anything nowadays??? When I first learned there was a problem, I thought okay, my poor baby will have struggles in his life. Never, never, never occurred to me that he could die. I learned, and I learned the hard lessons of grief, like how most friends and family drop off after a week, then the diehards after 2-3 weeks. At that point it seems they think you should be over it. At least that's what I experienced with my baby. For some reason it seems they thought, because he was only 7 days old, I hadn't had time to form an attachment to him. Honestly, I know I would have been just like them if I hadn't experienced such a loss myself. I learned. It took months of crying every day, followed by years of meltdowns whenever another friend got pregnant, had a baby, celebrated a child's milestone, etc. Twentyseven years and I'll still grieve for him, though in an entirely different way. 

So I'm no stranger to the grieving process, and I expected people would lose their desire to listen long before I lost my need to talk. I just didnt expect it to happen as quickly. Don't I get more than a week to talk about this? I mean, I was so numb the first week it shouldn't even count, right? I still want to talk. I want to talk about my husband of 33 years, how strong he had always been, how I felt unbelievable guilt for leaving him five years ago, how I never stopped loving him, and he never stopped hoping I'd come back. I want to talk about how that guilt has grown into an all consuming feeling - guilt about leaving him back then, and major guilt about leaving him alone to evacuate for Irma, even though I knew he was sick. He had just started to feel something serious was happening - we both thought it was COPD. I tried to help him from my safe place 1200 miles away. I sent him updates about when the power was expected to be restored (he was without power for 10 days), where to find gas for the generator when the gas stations started to reopen, and not to drink the water yet because of boil water notices. It was the first time I ever evacuated for a hurricane. I told him I was nervous about leaving him alone, but he told me to go. I know it's because my anxiety over the storm would have driven him crazy. I wish I would have listened to my gut and stayed! If I had only known then what he found out the day before I returned - it wasn't COPD, it was lung cancer, already spread to the brain and possibly other places. As he put it when he called me, "it's bad, real bad." Oh my god! I left my husband who had stage four lung cancer alone during what was expected to be the worst storm to hit Florida in our lifetime! To deal with 10 days of no power, no AC, no gas for the generator, food spoiling, and his brain being eaten up so he was losing his sense of time, his sense of reality. ("You told me yesterday that your friend said my power would be back on today and it's not! They lied! Everybody is lying to me!" No, I never said that. I'll never forget how strange that conversation was, almost a week before he found out it was cancer. I tried to tell myself his confusion was from lack of sleep, but I guess deep down I knew this wasn't COPD, especially when he started sleeping constantly. My brain just wouldn't let me think it yet. Because what kind of wife leaves her terminally ill husband alone during a hurricane??? Oh my God! I will never get over that guilt!)

I want to tell someone every detail about the next three weeks of hell, from scheduling the first oncologist appointment ("We can see your husband November 1st." In six weeks??? Are you kidding me??! No, he could be dead by then! We need to see the doctor today! Tomorrow at the latest!), starting radiation the next day, going in for the lung biopsy consult, deciding not to have the lung biopsy, hearing the oncologist had called and talked him into having the lung biopsy, getting the $&3%#?! lung biopsy, and being admitted to the hospital due to serious complications. I want to tell someone how my husband who has a phobia of hospitals went in for a lung biopsy and (almost) never came home. About how every day in that hospital was a torturous hell for him, and would have been even without the brain tumors that made him think I was gone for hours when it was minutes, and days when it was hours. How on the evening of the eighth day I found him in his hospital room, awake, with every light and TV off, as he told me quietly he knew he was never leaving the hospital, that he was going to die there. He had given up.

And something happened when he gave up, I grew stronger. The same way I did when I had to let our baby die. Something inside that says I can grieve later, and for the rest of my life, but right now I will be strong for you. I am here for you and only you. The amazing clarity that feeling gives. I have only one priority for now and that's you. 

Thank God for hospice! They made it possible for me to tell the doctor the next morning (when he told us for the ninth time you wouldn't be going home that day, or for a long time) that you were leaving as soon as hospice and I could get you home. And when you got home you relaxed. I relaxed. Yes, you still had paranoid moments, and fixated moments, like when you insisted I log in to your Dominoes account so that you could get the points for the Pizza order (seriously?!) but they were our moments, to be shared alone together, without nurses or doctors. 

I want to tell someone how you lived for four days at home, where you wanted to be, then slipped away so peacefully and quietly on the fifth morning, exactly four weeks after being diagnosed. I'm grateful for every moment we had together, and I'll miss you terribly, probably every day for the rest of my life. Oh I know, this grief will change, become more bearable. I'll cry less, smile more, and enjoy life again someday. I know this because I've been down this road before. We've been down this road before. Grief is a process, not linear, but eventually you move forward. I know this. But for now, I hide away in my room, and I cry, and I ache, because I want to talk, I want to tell someone, not just about your death, but your life, our life. I love you. ❤️

And I just needed to tell someone, so thank you for listening. 

Ladylacy
Posts: 769
Joined: Apr 2012

First off I am sorry to hear about your husband.  I lost mine in July 2015 after a 5 year battle with cancer and it was hard then and still is.  I understand what you are saying.  For me I was told not long ago that it was time to move on.  How is my question because we were together for 54 years and yes he was older but so what.  There are good days and bad days yet.  I did everything for my husband and I am thankful that only the last 6 weeks were bad for me to watch him go downhill and yes even lose my temper a few times which I regret to this day.  I would always tell him that I wasn't mad at him just the whole stinking situation and he understood.  And yes hospice was great and I can never thank them enough for all the help and support they gave.

Thing was during his battle he never complained or got mad at anyone or anything.  Towards the end he was upset because he couldn't do the things he loved like yard work building birdhouses camping.  He loved to be outdoors regardless of the weather.  Remember the good times you shared and even the bad times because memories are all we have left.  Don't let your guilt over little things and even big things take over.  As caregivers we do the best we can at the time and that is all we can do.

Wishing you peace and comfort

 

WatchaGonnaDo's picture
WatchaGonnaDo
Posts: 8
Joined: Sep 2017

Thank you. I'm so sorry to hear about your husband. I'm not sure how you would move on either. I think there is no moving on, more like moving sideways like you've stepped into a parallel universe.  

Today has been especially difficult. His (grown) children from a previous relationship are giving me a hard time - misplaced anger but it makes me physically ill. I feel like I'm under attack. Probably going to cut contact, but it makes me aware of how much their lives have been impacted as well, and how they'll Lao spend years grieving. 

TheTerry
Posts: 27
Joined: Sep 2017

...as you well know, WatchaGonnaDo. After my mother died (25 years ago), my family doctor said something that helped me - that the bereaved should be considered temporarily insane for at least the first year after the death. Many religions recognize a year as the major mourning period - after all, that's the period when you go through first holidays and first anniversaries without your loved one. That didn't  make it any easier but at leastt I didn't seriously think I was losing my mind.

I'm sorry about your husband's death, and I wish you courage and comfort.

At the moment, I'm sole caregiver for my kid sister who is in palliative care with metastatic endometrial cancer. She lives in Ottawa (Canada). I came here from my home in Toronto in mid-August for what I thought was going to be a two-week social visit. I knew she'd been having symptoms (after 6 cycles of chemotherapy last winter) and that she had a check-up at the cancer centre scheduled for the day after I arrived. I figured they'd recommend more chemo, and that I would stay for that and then commute for each treatment like I did last winter. And that we'd watch videos of movies she'd been too sick to see and that we'd just hang out.

But we learned at the cancer centre appointment, that the chemo hadn't worked and that the docs had no other treatment options to offer. My sister was given a month to live, admitted to hospital for some palliative procedures, and then discharged home, with community palliative care supports. She's been mostly stable for the two months she's been at home, but I noticed a change in her condition about 10 days ago. She's sleeping more, eating less, and getting a bit confused. I don't know how long she'll plateau at this level.

So I feel for you, and wish you well.

(You may prefer to talk, but you write really well.)

WatchaGonnaDo's picture
WatchaGonnaDo
Posts: 8
Joined: Sep 2017

I'm so sorry to hear about your sister's condition. Those stages went so quickly for my husband. My one regret (of many) is that I wasn't experienced enough to recognize the final stage. I would love to go back and hold his hand and talk to him around the clock for those mostly unconscious days. I remember the nurse saying he probably had about a week or two, and that was about an hour before he passed. So I was sitting next to him, but sending emails to work when he took his final few breaths. How careless of me to miss that!  

Thank you for sharing about the one year of temporary insanity. That's about the most logical thing I've heard regarding mourning. I think I will tell people that next time anyone tries to move me along at a faster pace. 

I wish you and your sister the best possible for your time together. 

(Thank you for the compliment about my writing. It helps to know I made some sense. :-))

 

JosephK
Posts: 65
Joined: Jun 2017

Many of us have guilt wondering if we could of done anything more. I was ignorant to the fact that I put too much trust in the Doctors. After she passed I realized there were other things that could of been suggested to prolong her life. They were never offered to us. I wish I would of traveled to places that had better research treatments i.e. Car-T. But I trusted her doctors too much in thinking they knew best. Well, they didn't and that's the guilt I live with.

WatchaGonnaDo's picture
WatchaGonnaDo
Posts: 8
Joined: Sep 2017

I am so sorry to hear about your wife. Your letter to her was beautiful. 

You are so right about putting trust in doctors, or rather not trusting them. I will always be angry at the oncologist who saw him once for about 30 minutes but was arrogant enough to talk him into the lung biopsy without really listening to his concerns. Because of where his tumor was located, it was going to be a very risky procedure with a good chance of lung collapsing. She should have known his body wasn't strong enough to recover from that. If we could go back, I think now the best thing would have been to continue with the radiation on the brain (that seemed to help as he was thinking more clearly after only a few sessions), not had the lung biopsy (avoiding the pain, stress on his body, and those tortuous days in the hospital), treated his pain, and spent what might have been a few more months in peace at home. It's hard to accept, but I believe the doctors really did harm him and accelerated his death, while making his last few weeks miserable. 

Of course, we can't turn back time. Something my counselor told me: regret is thinking you should have made a different decision in the past based on information you have now that you didn't have then. That makes sense, but I still feel the regret, and the guilt, because in some way I feel I let him down by not having the information I have now back then. That might seem illogical, but it's how I feel all the same. 

I guess the only thing that helps me a little is knowing that he truly would not want me to obsess over these things as he always wanted me to be happy. For now, I allow myself to stew in this cocktail of regret, remorse, guilt, pain, sadness, and more pain, pain, pain. But I also know, when I'm ready, I need to let those things go and be happy again. I wish the same for you, at your own pace, when you're ready. 

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