Who is your primary care partner? - CLL America Support
Please select all that apply:
I'm in Watch and Wait. So far I don't need a care provider.
I am generally an extremely independent person but this is no time to be on a solo journey. I suggest you engage a primary care partner now as they will become familiar with your CLL status now and how you look, feel and test results. They can assist in noticing changes you cannot see as well as remember info during your journey that will confirm what you remember or perhaps even enhance what you remember from appointments. They also give a different point of view
My partner in this has been my husband and he has been instrumental during my Watch and Wait as well as through treatment. If it wasn't for him I may have missed important information to point out during appointments and my eventual treatment.
My wife would be my care partner IF she was willing to do the job. Basically she refuses to participate or even talk about my health because it upsets her. So I am my own care partner.
It upsets my husband as well, but after 6 years on watch and wait, I have started taking him with me to appointments and he is learning about CLL and being a lot more supportive. He really didn't understand the fatigue and sickness I feel. He went with me to have a bone marrow biopsy recently and I was so glad he was there holding my hand. It made him feel good to be able to help, and it definitely helped me get through the process. I hope you can convince your wife that you need her participation.
That's really hard, todddunn, I'm sorry to hear that. Hopefully you can find other family members or friends to help support you.
I am so sorry toddunn that your wife is non-supportive. Reads like she's in denial and scared perhaps? Anyway to have another family member participate? I am so blessed that my husband has been a great partner. Hoping your wife sees this survey and starts accompanying you