How do I prepare my family for CLL without overwhelming them?

Hey Veronica, I think we're all still terrified of the unknown. I'll be 76 at the end of Oct and I have stage 3b NSCLC. So my days are numbered for sure and probably won't need a lengthy place to count them. I don't feel like I'm ready to go right now but when my time is over, I'm going to try to relax as best as I can and "move on through to the other side. " I have a mindset that, once the final journey begins, it will be peaceful until I emerge on the other side and then it will be ever so exciting! Of course I'd like to stay here where everything is familiar, I have loved ones and life is good but that's not an option. I do believe that our souls live on and that we will be presented with opportunities to make good decisions, which will surely test the knowledge that we bring with us. I think it will be so exciting to learn new things and figure out ways to live in true equality with others! To have the opportunity to expand our knowledge and grow into better beings seems like a lot of fun. Even if we wind up having to be the teachers, to share what we bring with us will be equally exciting! I hope there will be opportunities to connect with those who went before us and those who will be coming after us. I think there will be times when we can make a decision to make the new place a home with less violence and more respect for others! After what I've learned in this life, I'm looking forward to the myriad opportunities to make better decisions earlier on in the next one. I will certainly miss my loved ones left behind but I have a few already there to help guide me through some of the early decisions that need to be made to prepare me for helping the ones who will be coming along before too long. As I said before, I'm not anxious to get started early but want to be ready when it's my time. I wish you strength to fight like a warrior for peace in your journey as well 🙏 ❤️ ✨️! Safe travels! Respectively and with much love 💖 ❣️! Garey

Thanks Garey. I wish strength and courage for you as well. You sound like you have given it a lot of thought and are prepared for whatever comes next. I hope that I can be that strong. I will keep you in my prayers. If you ever want to talk, just reach out. I will be on this site everyday. It is such an encouragement to hear your thoughts. Much love and respect to you!

Thank you Veronica. I have definitely given a lot of thought to our mortality. I lost my previous wife to the same cancer I have in 2003. The major advances in treatments are the only reason I'm still here. We had 13 months to discuss the situation from her diagnosis until her death. We spent a lot of time talking about what happens and what she wanted me to do after she was gone. Our conversations really helped us come to terms with our mortality. I am a Vietnam veteran and already had some thoughts about mortality so this situation really solidified my thoughts and feelings in that regard. I have a new loving family now. My wife and I have a fantastic relationship. She had two boys early in life and two daughters later. We met at a bereavement support group. We lost our spouses six days apart. I adopted the two girls because the boys were already grown and on their own. I didn't really get to now them until several years later. At any rate, I have a great relationship with my new family. I have let everyone know about my wishes and given them permission to attend my end or not. I completely understand if they choose not to be there for the final journey. I don't mind talking about mortality at all. If I get into something that you're not comfortable with, please let me know, it won't be intentional. It's nice to have someone who doesn't mind discussing the situation because most people aren't really prepared for it, thinking there will be plenty of time later. The issue is that later never seems to happen. Thank you for the good conversation. I'm looking forward to speaking with you again. Take good care, Garey

Hi, I am 84 and have Multiple myeloma. There have been days that I have so much pain I would welcome the end. The doctor has put me on antidepressants I don’t having cancer is depressing. I’m doing much better now however, my palliative care nurse has some prescribed narcotic pain patch, and it has helped a lot as it most that you probably know multiple myeloma is not curable. I miss my independence probably the most. I’m unable to drive now and I’m unable to do all the things that I was used to doing before. I’ve always been a proud, independent woman so this has been difficult. I have my good days and my not so good days today just happens to be a good day. I wish you all the best on your journey Veronica Godspeed.

Hi Joyce. I have always been very independent, too. It is very frustrating not to be able to do the things I want to do. I have very good doctors, but when I mention to them how I want to be able to do more, I get the same response from them all. This is what they say, "You have to lower your expectations of what you can do." I can't do that. I KNOW that I can't do everything that I want to do and used to do, but I can't lower my expectations. Depression plays a big part in my life now too. It is depressing to know that I have 4 major health issues and not even one of them is curable. I try to snap out of it as quickly as possible. I have my little "pity party" and then try to get on with whatever needs to be done. I, too, have good and bad days. Thankfully more good than bad. I guess I was really ignorant about cancer before I was ddiagnosed. I thought that if you got cancer, you got treatment and it was cured. I knew the treatments could be bad but I didn't realize how often it can't be cured. I hope you have many wonderful days. I will keep you in my prayers.

Hey Garey. You are right. There isn't always a "later." My son who died 4 years ago is a perfect example of that. It was totally unexpected. My other son, Paul, had to take care of everything. I was there, but i wasn't able to function, if you know what I mean. I don't want him to have to do all that again for me. However, he really doesn't want to talk about it. I can tell it upsets him when I try to talk about it. I am prepared for my leaving this world, whether it is very soon or years from now. I know where I will be, and I am not scared at all. I have a very strong faith. I believe it when the Bible says, "to be absent from the body is to be present with God." I have decided to write everything down in a notebook for my son. All the things I need him to know, my wishes, passwords, phone numbers, etc. I plan to leave letters for each of them. I will make sure he knows where that is. I just don't want him to have to stress over anything when I am gone. I am glad that you are prepared also. A lot of people will not be ready, even with advance warning. I think losing a child made me very aware of how fast things can happen and that you shouldn't take anything for granted. Best wishes, peace, and love to you.

I'm really tired right now and ready for some sleep. My apologies for such a short note. I'll do better tomorrow or Wed. Have a great night!

Hey Joyce, I understand what you're going through. I'm really tired of having pain. I'm in the process of being evaluated for a spinal stimulator. We'll see how that goes. I'm really hoping for another few years. I'm being scheduled for a PET scan shortly. My last two have been negative. I wish you well in your journey. No one can take your pride away from you. Take good care, Garey

Praying for you. Stay strong in Jesus, He is our salvation and our rock in times of need. Truely my soul finds rest in God my hope.

Hey Garey. Just checking on you. I hope you are feeling better. I've been really tired and not feeling very well the last couple of days. Anyway, I hope to hear that you are feeling better soon!

Hey Veronica, I was feeling fairly low yesterday but I'm not going to let another bad day win! Thanks for checking on me. I hope today is going to be a better day for you as well. I'm very fortunate to have my wife. She understands what bad days are and when I'm having one. She gives me enough room/time to deal with it quietly, which is what works for me, but when it starts to extend, she will suggest something that I'm interested in to give my mind a little bit of a boost in the right direction. I almost lost her earlier this year. She has congestive heart failure and was very near to death's door. I certainly would have been in terrible shape if she had passed! I've been puttering around this morning, watering and trimming some of the house plants. I think it's about time I get in the shower and prepare myself for the rest of the day. I have a couple of things I avoided yesterday and a few things I should tackle for today. I simply won't tolerate another bad day! I'll be thinking about you and hoping things perk up for you! Stay strong 💪! Talk to you soon, Garey

I'm so glad to hear from you and glad to hear the positivity! You are truly blessed to have a wife who understands and can sense when you need space and when you need to be gently pushed. I'm sorry to hear that she has heart problems. I will keep her in my prayers also. If you want to, you can give me her name so I can pray for her by name. If you would rather not, that's ok too. I will pray for her either way. I woke up depressed, and I thought it was gonna be a pity party kind of day. Hearing your positive words kind of snapped me out of it. I'm gonna try to make it a good day, too.

I am in the infusion room now. Scan was good except some consolodation near lymph nodes. Dr thinks it is an infection. Will find out for sure tomorrow. I hope your pet scan is good! The anxiety crazy. My BP was 222/ 110. Take care!

Hey Veronica, my wife's name is Erika. I appreciate you very much. Your prayers are soooooo welcome! I can feel them coming in now. I'm so glad that my words helped put an end to the pity party! I also realize that a pity party is necessary sometimes but it's also important to not let the party hang out too long. I didn't get as much done as I was hoping for today but I feel pretty good about what I did get done. I'll have time to get myself re-directed tomorrow. I'm sending you another boatload of positivity and strength 💪 for tonight and tomorrow! I don't know if I've already mentioned this previously, please forgive me for repeating if I have, but there are scientific studies that prove a positive attitude helps with healing regardless of how serious the illness/disease is. The more positivity you can grab onto, the better you will feel compared to how you would feel without the positivity. I'll be thinking about you until I can't think anymore. Talk to you soon, Garey

Hey Donna, I hope your infusion went well. I'm hoping you got that blood pressure down. I'm happy for your good news on the scan being good. Hopefully, the infection will be in its early stages. Thank you for thinking about my scan. My appointment isn't until the 13th of next month. I'll be anxious until I get the results back too. Sending you a boatload of positivity and strength 💪 as well! Take good care, Garey

Veronica - I provided hospice care for my mother until she died in 2012. She had nothing written down. It was a nightmare to get into bank accounts, social media accounts, utility accounts, insurance accounts, etc. Fast forward, I now have stage four RCC and know that ultimately my time is limited. Luckily, I have an iPhone, which has every password and account I have stored on it. All my children and my husband know how to get into my iPhone and will have the luxury of having all my data when I pass. I consider that a kindness I can do for them all the time when they will be upset. I hope this advice helps and I hope that you’re having a nice day today.

Hello Bruce, and Everyone else who's reading this. It's my first day on here. Until now all I ever saw was New about different types of cancer and cancer trials is the first day I've seen patients talking about things there going through. To hear everyone illness and all y'all are going through. I must apologize to think that I was going through such a hard time there's nothing compared to you guys I am sorry. My name is Carol Duran I have cancer of the uterus, and feel like something was wrong for years but doctor couldn't find anything until this February 2025. I had Thickened Endometrium of the lining of the uterus. I'm still waiting for biopsy results after having surgery. It's been a little over a week since the surgery of the uterus and other female organs removed. I've had dep depression all my life. I use to take me 2 or 3 months to come out of the depression. Now it takes one to day to a week or more. Which I thought was good. Until I read everyone 's notes. God Bless all of you 💝🙏 and again thank you all. Sincerely by for now.

It sounds like you have plenty on your plate too.

Hey Carol, we need to be careful about comparing issues with other people. It's really easy to get lost in the comparisons and get to feeling like we're not important or significant because someone else has bigger issues. When we have issues, we just meet them head on and deal with them the best way we can. When I start feeling sorry for myself is the only time I use comparisons. It's pretty easy to find someone who is struggling more than I am and it helps me bring back the positivity. And positivity is the best medicine we can give ourselves, and it's free! I'm happy for you because it sounds like that's what you were doing too. Be kind to yourself and stay strong. All the best to you and your loved ones!

Hey Donna, I hope you are doing well. It has been a while since I've seen anything from you. If you have time and feel up to it, we are interested and hopeful that you are doing well! Stay strong 💪 and fight like a warrior 🪖! Hope to hear from you soon.

Hey Veronica, thank you for your kind words here. I hope you're doing well. I'd love to hear how things are going with you. I'm sending you buckets full of positivity! Take good care, Garey

Hey Garey. I have been really sick the last week or so. Not the luekemia, the gastroparesis. In the hospital for almost a week. Still feel pretty bad. Hopefully I will feel like writing more tomorrow. I hope you and Erika are doing well. I will try to write more tomorrow.

Hey Veronica, I just had my immunotherapy treatment yesterday. It really saps my energy for a few days. You're always in my thoughts. I know this is a rough journey and I'm sending you positive energy and strength to help you find some peace. Thank you very kindly for your thoughts. I hope we can meet on the other side. Stay strong 💪. Keep in touch whenever you can. Much love to you and your loved ones 💕!

Welcome to this supportive community, and thank you for sharing your concerns about preparing your family while managing multiple health conditions. Many people in similar situations find it helpful to have gentle, gradual conversations with their loved ones about important documents and wishes, perhaps framing it as general life planning rather than crisis preparation, which can feel less overwhelming for everyone involved. Since you mentioned feeling very alone and scared, please consider reaching out by scrolling down the page from the Home Screen of the app to find the Ask Outcomes4Me box to get in touch for a more personal conversation with clinical care experts, and remember that the 988 hotline is also available if you need immediate emotional support.

Hey Veronica, it's been awhile since I've heard from you. I just wanted to check in with you to see how you're doing. If you feel well enough to send a few lines, I'd appreciate hearing from you. Take good care, Garey