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LilyAnneLouis

Father with Stage IV

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Hi,

I am completely new to any forum like this. I'm really looking for comfort in how everyone handles this experience. My father was diagnosed with stage IV NSC lung cancer about a year ago. He started chemo and avastin in February and has rotated those treatments ever since. Recently he had fluid build up around his heart and had to have the fluid drained and then he began immunotherapy injections. Recently his cancer has impacted his larynx, cause one vocal chord to become paralyzed. (This makes eating, swallowing, breathing and coughing really difficult for him.) I am doing my best to be there for whatever he needs and really keep the focus on him. Lately, as he loses weight and the hospital visits become more and more frequent, I find myself so overwhelmed. How are you all coping with this? I'm spiritual and I meditate, but lately I haven't been taking care of that side of myself mentally. I'm exhausted and terrified and in my dad's most recent stint in the hospital he revealed to me how terrified he was. How are you family members and caretakers coping? I feel liked I could explode. My teaching has suffered, barely sleep and I'm anxious all the time (I already suffer from anxiety). I guess writing this has answered many of my own questions, but I feel like I should be talking to someone. The doctors made it clear that this is what the fight for prolonging life looks like in the world of lung cancer and I'm just having trouble coping. Sorry to make this so about my feelings. I will take any advice and I hope everyone the very best.

 

Lily

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Lily,

I am the patient; my wife was my caretaker.  I hung on to life, but she would tell you there is no coping with lung cancer.  And, this is so much about your feelings.  You love your dad and to watch him go through this struggle is devastating.  To not be able to influence the outcome is even more devastating.  I wish I had a magic wand I could wave to absolve you of this maddening situation.  I don't.  So we are left with reality.

You've told us the doctors have explained the challenge of prolonging life.  If it were me, in your dad's shoes, I'd want to live out my life at home seeking whatever joy is possible by interacting with my family and friends.  When I was facing an end state decision, we decided home hospice care would be our choice.  I never reached that threshold but I will face that circumstance again and I will again choose home hospice care.

We all face death, the only uncertainty is when.  Lung cancer often puts a time stamp on when.  So if the stamp is applied, the question remains: what does one do with the remaining life?  I am choosing to live to the end, to try and find joy in every moment.

My advice: help your dad live and enjoy every moment.

Stay the course.

Tom

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Lily,

I'm sorry that you and your family are dealing with this disease.  I mentioned this to another forum member: lung cancer is tough on the patient but I believe it is equally as tough on the caregivers, family and friends.  For months, my husband wouldn't leave me alone at all - not even for 10 minutes - until I convinced him it was okay.  It has taken a toll on him.  I also see the toll that 19 years of my dad's illnesses (stroke, melanoma, lymphoma) have taken on my mom.  She was really wrung out this year trying to be with me for chemo every three weeks and then driving the 200+ miles home to get my dad to chemo.  

As his daughter, and as a caregiver, you want to be there and fight 110% but you have to take the time to take care of yourself.  Your stress and anxiety will be apparent to him and, if he's like I am, he'll worry more about you than himself.  Take an hour each day and do something that brings you some peace, whether it's meditation, prayer, or listening to your favorite music as loud as you can.  If you can recharge your batteries, you'll be in a much better place for you and your family.

Please know that I'll be thinking about you and your dad.   

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Hi Lily, 

I'm so sorry you are going through this. Don't apologize for  your feelings - that is what this forum is for (IMHO). My stepdad, who lives with us, was diagnosed last December as well with Stage IV nsclc. He did five days of radiation after diagnosis, then chose to wait for progression before chemo since he felt well. He spent the summer golfing and still working full time. He is about to do his second day of IV chemo (he is doing four rounds, 21 days apart, with the last round on December 22). They call it "comfort chemo" I guess. Progression is really starting now. Honestly I'm overwhelmed and he hasn't even "really" started to experience what you and your dad are experiencing now. I know my work will start to suffer, parenting, everything, when all I really want to do is spend time with him. We talk a lot, at his pace, and I let him be angry or sad when he needs to be. We do normal activities to the greatest extent, and follow his cues. They say self care is important but like you, I don't know what that means or how to do it. Will your dad journal? I bought a "grandfathers'" journal that I gave to him a few weeks ago, I'm hoping he'll fill it out with some memories for my son. Is there a counselor or social worker you could talk to? Would journal-ling help you? I try to do as much as I can alone but we use volunteer drivers now and then and I have a cleaning lady coming in every two weeks just to take something off my plate. 

We are in Canada, so we have the option of compassionate leave from work for up to six months, at a 50% reduction in wages. I may do this in the new year. It's so hard. I guess just let him know you are there, and take solace in the fact that you ARE ENOUGH AND YOU ARE DOING THE BEST YOU CAN. 

I'm right where you are, although maybe a few weeks/months behind. Feel free to reach out if you think it would help. <3 

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Hi, Lily,

Welcome to LCSC. I'm sorry to hear of your father's diagnosis. I'm glad you've joined this community. It's a great place to connect with other caregivers and patients/survivors to hear their stories and advice firsthand. LUNGevity also has many resources to help with caregiver burnout and fatigue. There are also tip sheets and stories from other caregivers who've been on similar journeys. Here's the link https://www.lungevity.org/support-survivorship/caregiver-resource-center

Please keep us posted on how you and your father are doing.

Lauren
--
Digital Community Manager
LUNGevity Foundation

 

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