Jump to content
Kwally3

Can you share how you bonded w/ your loved one during their 2nd half of the journey?

Recommended Posts

Hi,

After 11 months, I feel like we are entering the second, more difficult, phase of the journey. Can you share how you bonded/made memories with your loved one at this point? 

 
My dad's starting 2nd line chemo for EGFR nsclc turned small cell. He has refractory progression and liver metastasis, so essentially it is more aggressive than average and prognosis not so good. Doctor says he has 9 months, but maybe less since those stats are for SCLC--his is EGFR turned small cell and seem more aggressive. There's still hope--there's third line and the FDA will make an approval decision on new drug lurbinectedin in August, so that's two chances to freeze the disease. That said, dad has always been the family head, and now I feel we're getting closer to that role transferring to me, which is a scary thought.

Some things I'd like to do:

-We definitely need to sort out his remaining legal affairs. I just hope he won't see it as we're losing the fight.

-I want to take 6 months off work to build memories with him. paint the fence, go on hikes, get him delicious foods. currently he lays on the couch watching movies all day while I work from 730am to 8pm in the other room. 

-I'm the only one who knows the timeline of his prognosis. Though uncle tagged along for the appointments, they're the type to not want to know too much about the bad news. I think it's time to share a little bit more with my uncle and relatives, telling them that, just in case, they should make plans to visit within the next 6 months 

-I also want to speak with our oncologist on how he will change physically and cognitively as we go through 3rd line and hospice. . .

 

Share this post


Link to post
Share on other sites

Welcome here.

I can’t offer suggestions better than yours about end-of-life activities with your dad. I think it matters little what you do but rather you do things together. 

I also applaud your hospice engagement. This service will make your dad’s journey far easier than attempting additional curative measures. 

Stay in touch and let us know if we can help with hospice methods or symptoms. 

Stay the course. 

Tom

Share this post


Link to post
Share on other sites

Kwally,

Now I have been on both sides of the table I can only offer a little perspective.

As the patient now I have made it my mission in life to treat my wife and kids as the precious gifts they are. I'm still dad but the last 3 months with my adult boys have been a joy. So has my time with my wife. This attitude is something I am in total control of.....so it has a high priority. So far bonding with my family has been one of the only positives of Cancer.

As a caregiver it's harder. All I want from my wife, kids and dog is love. If I was on the other side again that would be my number one focus.....love.

Peace

Tom

Share this post


Link to post
Share on other sites

Hi Kwally. I’m truly sorry that you are going through this. I’ve been down the road you are on. I lost my Mom on May 5th after an 18 month fight with a combo of NSCLC & SCLC. I was there for everything beginning to end. What I can tell you is just enjoy being with your Dad every minute you can even if it’s just sitting with him talking. I learned more about my Mom in the last 6 months of her life than I knew in the previous 60 years of my life. It’s the simple things that ultimately mean the most in my opinion.  It’s hard to discuss the “business end” of things but it’s a relief to know exactly what’s what and their wishes. My Mom had her affairs in order long before her diagnosis but there were still things that needed to be discussed and I was relieved when we had that discussion because there was no question in my mind about what to do. If you and your Dad choose hospice when the time comes, they are a huge support system. Ask questions, educate yourself on what to expect. There is no absolute timeline and everyone is different but if you know what the subtle changes you see mean, you may be more prepared for the next step and the ones after that. The last week of my Moms life was the most terrifying experience of my life and there were many times I asked myself how in the world did I ever think I could do it. But I did it, you find strength you never knew you had. And as terrifying as it was and as heartbroken as I am, I would do it all over again for her. I wish for strength and peace for you in the journey you have in front of you.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...