New caregiver here....

[CoCoNG]

Hi. I’m new. My husband & I moved to a new city a year ago excited about being empty nesters as out last of 4 kiddos went off to college 2 years ago. 
a couple of months later he had major stomach issues & had to have emergency stomach surgery, but when did scan they found he had stage 4 metastatic lung cancer. Gave him about a year & 1/2, maybe 2 years to live. 
we have been on a hell-ashious journey Ever sense. 
I’m working hard to stay as healthy as I can, emotionally through this craziness, emotional rollercoaster that blindsided us. 
And that is what led me here. 
Ive been looking for, “my people” who understand. B/c God love my friends, they don’t & I hope they never have to. 
Yet I need someone who does. 
Love & hugs to all on this treacherous journey. God bless. 

[CoCoNG]

2 minutes ago, CoCoNG said:

Hi. I’m new. My husband & I moved to a new city a year ago excited about being empty nesters as our last of 4 kiddos went off to college 2 years ago. 
a couple of months later he had major stomach issues & had to have emergency stomach surgery, but when did scan they found he had stage 4 metastatic lung cancer. Gave him about a year & 1/2, maybe 2 years to live. 
we have been on a hell-ashious journey Ever sense. 
I’m working hard to stay as healthy as I can, emotionally through this craziness, emotional rollercoaster that blindsided us. 
And that is what led me here. 
Ive been looking for, “my people” who understand. B/c God love my friends, they don’t & I hope they never have to. 
Yet I need someone who does. 
Love & hugs to all on this treacherous journey. God bless. 

“I wish I had met you sooner, so I could love you longer” 

[Judy M2]

Hi CoCoNG, we get you, and this is a good community to be a part of. You guys are a cute couple! 

I had major emergency abdominal surgery after undergoing radiation and chemo. That experience was, as you say, hellacious, so I completely understand your husband's situation. It took me months to recover last year.

You don't say what LC treatment your husband has had. After my surgery, I started on a targeted therapy for the mutation that caused my Stage IIIB NSCLC. But all the treatments have worked and I'm doing very well today. I hope your husband is also feeling good. 

[CoCoNG]

He has had different chemos for a year that have not worked sadly; it has continued to spread. He has been unable to do radiation b/c he has severe rheumatoid arthritis & they say his bones will break b/c the cancer is all in his bones & he wants quality of life most of all. 
recently his last oncologist gave him a new chemo & he couldn’t breath that evening. I called & sent messages through MyChart for 2 weeks w/ no response. His breathing got so much worse & he ran fever. He wouldn’t let me take him to the hospital & finally let me take him to his doctor & she put him in the hospital & he had bacterial pneumonia & had sepsis & new chemo gave him a rare lung disease & may be permanent. He is now on oxygen 24/7 & no chemo for 3-4 months. 
we have a new great oncologist, 3rd one now, finally a great one. It’s been hell.  

[Judy M2]

Oh wow, how rough for him. I can understand the desire for a quality of life after everything he's been through. Feel free to vent here any time. I always say that illness can be hardest on caregivers. You both need support. Glad you joined us. 

[CoCoNG]

Thank you & im grateful you have had some success. I don’t want to get into all our gore details. It’s been hell & probably what I’ve learned this most is that we have to research & be our own advocates or our loved ones advocates sadly. It’s been difficult trying to find someone in the medical community not to treat him just like a # & remember he’s a human being w/ a family that loves him & a career that he loves helping families & countless lives. I’m grateful we’ve finally found a good oncologist; I guess 3rd time a charm. Ha. God bless you on your journey. Hugs.  And thanks for responding. 

[CoCoNG]

I’ve struggled to put into words this hellacious journey we were thrust into a year ago, blindsided by. 
At times it takes my breath, literally. I’m in a 12 step recovery group, that’s where we met, our broken roads, and life has been amazing ever sense. 
In recovery, we continue to shed all our masks & be honest & authentic. 
This new life I’ve been thrust into, I find myself putting masks back on to hide the pain that’s indescribable. 
There are absolutely no words I could possibly find to describe the agony of watching my best friend in this world suffer continuously and there’s absolutely nothing I can do to help him. Or watch him in pain & I can do nothing to ease it. Such powerlessness is worse hell than anything I could ever possibly go through myself & have prayed endlessly to God to give it me rather than him. 
what I wouldn’t do to trade places so I wouldn’t have to watch him suffer while I just sit there helpless not able to ease anything. 
so many nights after I’ve helped him to bed, I’ve gone to take a bath & cried endlessly where he wouldn’t see me. I didn’t even know I could cry that much. I’ve had nightmares & wake up crying. 
As he continues to get worse, the ache & pain grows. I still feel like I’m in a nightmare that I haven’t waken up from. I pretend to be this “positive Pollyanna” b/c I want his days to be joy-filled as they can be. I pray we laugh at least once a day or many more if possible. 
I wear a mask at work. I wear mask w/ friends. I guess it’s how I am able to function now. 
Im in therapy b/c I don’t know how I’m going to do this. How I will survive this. When “it’s time”. I can’t even say it. 
Ive searched everywhere for a support group for caregivers finding nothing around me. I called my husband’s hospital & they gave me this. And that’s how I’m here. 
And this.....this is the 1st time I’ve said, all of this. 
maybe, I just needed to say it. 

[TJM]

No masks here. Just use us as much as you need to.

FWIW, as a patient, your being there and caring and helping are probably appreciated much more than you know. I know for myself, that without my wife's support, life would be hell.

In my thoughts 

Peace

Tom

[BridgetO]

Hi CoCoNG and welcome here. I'm glad you found us. I'm sorry for what your husband and you are going through. You wonder how you will get through this. You're in a 12-step program, so you understand "one day at a time". That's how you do it. and if one day seems impossible, then one hour,  or even 10 minutes. You can do this.  

One suggestion I have is to ask for a referral to a palliative care doctor. Some people think palliative care is the same as hospice, but it's not. (Although palliative care can  be part of hospice services). Palliative care aims to help people who have serious illnesses deal with pain and other symptoms such as breathing problems and nausea, whether caused by the illness or the treatment. It focuses on helping patients have a better quality of life. 

Hang in there and let us know how we can best support you.

Bridget O

[CoCoNG]

Thank you for that. I feel so helpless & wish I could do so much more. 😭

[CoCoNG]

And I certainly know, one day at a time, those words mean more now than ever. Seriously. I don’t think I even knew the true depth of them until now. 

[Saturn_Bound]

Hi Coco,

I am really sorry to hear about your husband. I can see lots of love in your photo.

I am my Mom's caregiver and we are in a similar boat as you. I break down every day just imagining a life without her but I always slowly pick myself back up to be by her side. 

She is also on 24/7 Oxygen now and cannot walk 2 steps without the oxygen levels falling dangerously low (72%), and it takes a couple of minutes for her levels to get back to 90 after any activity (even with the supplemental oxygen). The physical therapist does not want her oxygen dipping low, so anything (such as using the commode) take a good 5-10 minutes of pacing her.

I just wanted to share a little and let you know that you and your husband are also in my thoughts and prayers. I hope more than anything they both will find a treatment that improves their condition and quality of life, and hopefully gives us some good years ❤️

[LexieCat]

Hi, and welcome from me, too. I'd like to second Bridget's suggestion of finding a palliative care doctor to relieve some of his symptoms related to treatment. The oncologists are concentrating on fighting the cancer; palliative care focuses on comfort and pain relief. 

[CoCoNG]

Thank you all for suggestions. We have a pulmonologist on our team working w/ oncologist & they are trying several lung medications & he is doing breathing treatments & powerful steroids. His hardheadedness made me get a mobile oxygen so he could go in the office a couple of days a week. 
docs want him home healing yet he’s going stir crazy. He has to move slow or his oxygen drops, like your mom, but his recoup time has gotten better. His drive is helping families & opening a new rehab in the state. I believe that’s what drives him & his will to live & keeps him going most days. I finally saw he needs to be needed & he very much is. He’s brilliant so.....

life goes on. One day at a time. He had a heart attack 2 years ago & we have a heart doctor on our team as well. I worry about the massive doses of steroids he is having to take for his RA (that has been in place of normal RA meds just so he can walk) & now more steroids to try & clear up his rare lung disease he was given by last new chemo. They say, the risks out way the means. It’s all so scary. All his uncles died in their 40’s of massive heart attacks & his mother in her 50’s. I have anxiety on a “normal” day.... I got back on my anxiety meds. 
I just don’t how anyone navigates through all of this. 
God bless all who goes through this, fighting it & watching their love one. 🙏🏽

[Judy M2]

CoCo, it is great that you are in therapy. In addition, there are oncology counselors who can help the entire family. Your husband's new oncologist may be able to refer you. 

I do agree with Bridget and Lexie about palliative care. They are experts and really listen to patients and their families. While I had a palliative care team for pain management when I needed it, they also help with quality of life. 

My experience has taught me to take one day at a time, like you are doing. It really takes discipline for me to compartmentalize my thoughts, but that is my coping strategy. 

You are doing enough just by supporting your husband, and I'm sure he appreciates everything you're doing for him. Hugs to you. 

[LouT]

CoCoNG,

So sorry to hear about your husband.  This is a tough disease and unfortunately can be as tough on a caregiver as it is on the patient.  We have a Caregiver Resource Center and you can find that here.  In addition, you've had some rough times on this journey and your husband may find some nuggets on a piece written by one of our senior members who is 17 years past his diagnosis of Stage 3 Lung Cancer.  It's called "10 Steps to Surviving Lung Cancer by a Survivor" and you click on this site.

This will be a great place for you both to hear how others have dealt with diagnosis, treatment and survival.  I hope your husband will join you here because you won't find a group anywhere who "gets it" more than our family.

Lou

[CoCoNG]

Appreciate you sending the resources. I will talk to him about tomorrow. Got him to bed early. He’s not getting any better, sadly. It’s been about 5 weeks now. We see the pulmonologist on his team next week so I’m anxious for that. We see oncologist on 16th. His white blood cell count out the roof still as well on Wednesday when tested & they still running more tests. He has no energy & struggling to breathe just walking to the bathroom with oxygen on. 
it breaks my heart. He’s on breathing treatments & many meds for lungs. His hip is hurting again, that was worse place where cancer had spread in his bones; that’s where they got 2 biopsy b/c easy place b/c so big. 
I’m scared. He seems to be getting worse. 
 

Im remembering in the beginning the doctor’s words- maybe a year &1/2, 2 at max prognosis. It’s been a year with no chemo working & his cancer continuing to spread. No doctor has really told us anything lately. 
we have a new oncologist now. Ct scan on 15 & see him on 16. I wonder if we will get any estimated time frame then. I just hope that last oncologist didn’t end up killing him faster. 
 

he’s getting depressed knowing he’s not getting better. It breaks my heart. His mind is sharp & he’s so frustrated his body is giving out on him. The pain of not being able to make things better for him. My heart feels like it could break in a million pieces. 

[Saturn_Bound]

Hi Coco,

i am so sorry he is experiencing worsening symptoms. I know the struggle all too well as I’m there with my mom right now. She actually can’t even make it to the bathroom next to her room because of rapid desaturation so we are now using a bedside commode. She still desaturates to 80 but at least it’s manageable, we take little steps....first sit on the edge if the bed...wait till oxygen goes back up...then stand up and move to the commode...wait for oxygen to get back....etc

i am glad to hear you finally found an oncologist you like. Did they mention any next steps for treatment yet?

My mom is dreading her next chemo infusion since it completely wiped her out. I’m starting to wonder if all the chemo is worth it in terms of quality of life but I’m trying to trust what the oncologist has planned!

 

 

[CoCoNG]

Oncologist said no more chemo for at least 3-4 months b/c of the rare lung disease he has now b/c of the last chemo he was given that gave him the rare lung disease. That could kill him quicker now than the metastatic lung cancer, which has not stop spreading all year since we started all this. 
 

he’s refusing to use urine bottles b/c he doesn’t want me cleaning them out & just moves slowly to the bathroom now. His oxygen drops to about 77 when ever he gets up to move somewhere, then he has to sit & catch his breath. 1 of the lung meds makes him dizzy- that’s just what he needs, right, so he has to go slow & hold on to something while moving which makes him frustrated. 
 

im just praying this rare lung disease won’t be permanent, which is a possibility or we have scar tissue, another possibility. Curious about pulmonologist next week & if he has any other suggestions on him breathing any better. 🙏🏽🙏🏽
 

my whole family going to the beach in 3 weeks & my dad got a photographer. Will probably be last professional pics we have. 😭 I’m just praying he feels better by then so we can make some happy memories. We love the beach. 
move gotten a wagon to take all our stuff & his portable oxygen down umbrella for his chair & backpack cooler for me so will be easy for me to take everything myself since he can’t carry anything. 
I’m just praying he will be alright by then. I want to laugh with him. I want him to have a peaceful time & be happy & enjoy it. 
 

just getting scared. Watching him suffer, there are no words for this kind of hell. 

[Judy M2]

For your husband's safety, I'd recommend a bedside commode and a Rollator with a seat so he can sit when he needs to, as well as a sturdy shower chair (available on Amazon) and ideally shower grab bars. I used a Rollator and shower chair in the months after my surgery and still have them. It's important to accommodate his current limitations. I'd also encourage the use of urine bottles regardless the cleaning issue. Home health is a good resource to assess needs and provide solutions, but I'm not sure if that's available to you.