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lsaut

How do you do it?

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Dear step father is in his late 60s and has Stage IV lc. Had five days of radiation in December but no treatment since. Oncologist has been happy with slow progression and appointments have been every other month since December. New CT scans are being done tomorrow with next Oncologist appointment in 3 weeks. DH and I work stressful jobs and long hours. We have a 2.5 yo, and dear SF moved in with us the day of his diagnosis. We had planned for him to move in before diagnosis, but it sped up the process. 

 

I feel like I'm not doing enough to make his final months/year? (or maybe more!! fingers crossed) meaningful. I lose patience with him and my son more than I would like. I am full time caregiver to both of them, part time college student (required for career), and busy career woman. 

 

We may find that I'll need to take a leave of absence from work once his health starts to decline. It already feels like most days are a struggle and he isn't even "declining" yet, although the last few weeks there has been more coughing, heartburn, fatigue. I'll be surprised if his next check up is as good as the last few. 

 

We don't have other family members to lean on. I've hired a cleaning lady for every other week just to help me keep up on things. It feels like we are in "survival" mode, but I also feel like I'm not doing enough for him. He doesn't want things to change because of his lc. There is no handbook for this stuff. 

 

I guess this is a vent more than anything. Just needed to put it all out there. <3  

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Isaut,

 

And it is a good vent and a difficult situation that unfortunately many lung cancer patients face.  We have three forms of treatment available to us all:  curative, palliative and hospice.  Depending on the results of his forthcoming CT scan, you may be exploring the latter two.

 

I've said often, if one chooses treatment for lung cancer, one chooses life and you may be on the cusp of making another treatment choice.

 

When my disease was moving away from the curative spectrum, my wife and I did a great deal of reading about hospice care.  We interviewed local hospice in-home providers, recommended by my oncologist, and acquainted ourselves with their services.  We found dealing with the oncologist was important because he would be the doctor prescribing necessary medications while in hospice care.  We also learned of the specialized equipment we might need (bed, O2 and etc.) to equip our home for hospice care.  Some of these costs are paid by medical insurance and some are not.

 

You are right about the lack of a handbook.  Might you want to write one after you research things?

 

Stay the course.

 

Tom

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I'm so sorry you are dealing with so much right now.  I was a full time caretaker for my husband with no help from anyone until I was forced to call hospice.  My advice to you dear one is that you can't take care of everyone else without taking care of yourself as well!  Please keep us updated and I wish the best for you.  ((hugs))

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I do understand what this feels like as I was a primary caregiver for my father who had extensive stage lung cancer. I definitely think that you should take advantage of any resource available in your local area. It may also be a good idea to evaluate the situation with his medical team to see if it is time to begin a new treatment plan or add additional palliative care. I know that being all things for so many people is a real struggle and stressor. It can take a toll on your health. Michelle is right. You do need to take care of yourself to. And definitely ask for help from those around you - your neighbors, coworkers, friends, extended family. People really do want to help if you let them. Please keep posting and keep us updated.

My best thoughts and hopes for you.

Sent from my HP 10 G2 Tablet using Tapatalk

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Thank you everyone. I've started seeing a counselor on a monthly basis to work through some of the anxiety and guilt I'm feeling. Last week we had a great visit with the oncologist. Four new spots on the left lung since late November, but largest is 9mm. Another catscan scheduled for the end of August and next appointment after that. Dear step dad has decided not to pursue chemotherapy. His quality of life is really great right now and he doesn't want to spend the summer going through treatment. Will reassess in the fall. He was given 6-8 months in early December, and there has been almost no change in his health, so we are overjoyed! 

 

I have asked my family health team to take him on as a patient for his palliative care when we get to that stage - so waiting to hear about that. 

 

One day at a time! 

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Hi Isaut,

 

I'm happy to hear that things are getting better for you and your family. It's great that you're being proactive about palliative care. If and when the time comes that it becomes necessary, it sounds like you'll be more prepared. And I'm glad that you've been able to talk with someone about how all of this is affecting you. Stay strong and keep us posted!

 

Lauren

--

Digital Community Manager

LUNGevity Foundation

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