Who is your primary care partner? - CLL America Support

CLL America Support

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Who is your primary care partner?

tclementi profile imagetclementi16 Voters

Please select all that apply:

8 Replies
Ducksoup profile image
Ducksoup

I'm in Watch and Wait. So far I don't need a care provider.

NoMoreCLL profile image
NoMoreCLL in reply toDucksoup

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.

tclementi profile image
tclementi in reply toNoMoreCLL

Good advice NoMoreCLL! Thank you for sharing your experience.

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.

mgh348 profile image
mgh348 in reply to

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.

NoMoreCLL profile image
NoMoreCLL in reply tomgh348

I am glad mgh348 that you are taking your husband along - ESP through a BMB. I find them incredibly painful. Continue to bring him along on your journey. The more he learns the better for both of you.

tclementi profile image
tclementi in reply to

That's really hard, todddunn, I'm sorry to hear that. Hopefully you can find other family members or friends to help support you.

NoMoreCLL profile image
NoMoreCLL in reply to

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

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