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Does anyone have B-cell prolymphocytic leukemia (B-PLL)?
Does anyone have B-PLL or have been a caregiver for someone who has or has had B-PLL? I need to communicate with someone who understands.
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Thank you for your support.
Tough days ahead.the girls have returned to their work
Yesterday was my first day on my own here in the house.it never happens that the house is empty as Michael was always here.I have had signs that he is nearby,my daughters witnessed it to.before his painful death he assured me he would protect us.
The greenhouse is still now,I am looking out at it
I haven’t gone into it yet,time enough for that
I am blessed with friends and neighbours
Michael was greatly loved.
His grave is so beautiful ,if that is possible with such an abundance of flowers,he would be happy .they were such a part of his life ,since his accident all those years ago ,35 this New Year’s Eve.
The priest that anointed him will visit today.
That will be a comfort.
Have a blessed today
Make each day count,and hug the ones you love
😘🥲💖
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2 ReactionsThese little signs from Michael are such gifts aren’t they? My husband always felt they were in my imagination until after his mother passed. There were unexplainable little signs that her love endured and now he shares my belief in these little moments.
Aw, I can envision Michael’s quiet green house. It’s ok to let it rest, just as you need rest right now. It’s a time to recharge and reflect, a time to renew your spirit and let the pain ease. In the springtime I will expect that you’ll feel the desire to bring this beloved greenhouse back to life in honor of it’s great caretaker.
I’m glad to hear his priest will visit with you today. I think having a spiritual leader right now will help bring you some much needed comfort and reassurances. But I also know this is going to be a very difficult time and I don’t want you to ever feel alone. You already know the love and support we have for each other in our Connect forum. There is also a Loss/Grief discussion group here that I’d like you to consider when you’re ready.
https://connect.mayoclinic.org/group/loss-grief/
https://connect.mayoclinic.org/discussion/death-of-husband/
One thing that has really helped me after a painful loss is distraction. Taking walks, listening to music, painting, reading, even when I had to force myself to do it. But I found when I did push myself to do an activity, I was amazed that concentrating on something, for even a few minutes, gave me a small reprieve from the overwhelming emotions, it allows me to heal incrementally in the background. I think it’s important for our ability to assimilate to a new situation.
I know you were taking 5k walks previously and they were so beneficial for you. You can talk to Michael on these walks and share the special things you see, feel and here. There might be more little signs along the way. Will you consider starting these walks again?
UCSF AND NHL
Hi Fran, welcome. I can imagine how concerned you are not having a team of specialists available where you are currently getting care. Have you considered contacting Mayo Clinic for a second opinion? After visiting Mayo Clinic, they can often work with your local team, offering the expertise that may not be available to you locally. Here is the contact form and/or phone numbers to inquire further: http://mayocl.in/1mtmR63
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1 ReactionFilled online request.Have phone appointment next Tuesday. Thanks a gazillion !!!
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2 ReactionsHappy New Year!!!! I wish for health and happiness to you all in 2022. Spend time for family, friends, and what brings joy to your day. Cherish each day, make it a great one!
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1 ReactionHow long is wait time for Mayo appt.? I realize it's a holiday now and nada gets done. I am anticipating March 2022.¿ Thoughts?
Hi Fran, appointment wait times may be longer than usual during these unprecedented times. There are many factors that get considered.
Did you have your phone appointment already? Did they give you an indication of how long the wait may be?
Happy New Year to you to, @81ue. How are you doing these days?
Still alive!!! Happy New Year Colleen! I'm still on Venclexta and still wondering if it is "for the rest of my life" I just gave a blood sample for a flow cytometry. Diagnosed B-PLL, still missing and grateful to have chatted online with the B-PLL online friends Barbara and Smith.
B-PLL is the lonely diagnosis that is treated like an aggressive high risk CLL and very rare.
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