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Living with Psoriatic Arthritis (PsA)

Sister's CLL just started sinking in


#1

My little sister was diagnosed in 2016 with CLL. She had been taking biologics (Humera, Stelara, etc.) for her psoriasis, and started coming down with illnesses, skin lesions, and other symptoms. She was on “watch and wait” non-treatment for 2 years, until just a few months ago, when she started taking a new drug on a drug trial. I’m not sure what it’s called. She was always pretty healthy, even after being diagnosed. I just talked to her last night, and boy, it really started to sink in that “my sister has cancer”. She is achy, tired all the time, and I’m getting really scared. I don’t know what to say to her - I don’t want to act too nonchalant, but I also don’t want to stress her with me crying and getting sad. She’s always been MY rock. We live about 4 hours away from each other. I’m going to visit her for a few days later this month, and I want to have a good time with her. Any suggestions on our weekend together? I don’t want to be morose, but I also don’t want to brush off how she’s feeling. The first thing I know I’ll do is give her a huge kiss and hug, and we’ll probably both start bawling due to our 86 year old dad being in failing health. We also just lost our Mom in 2016 to Parkinson’s, and our older brother to drug-related mania and depression, then ultimately, suicide, last Christmas.


#2

What a rough couple of years for your whole family. The only suggestion I can think of is if you have any old standing traditions or childhood memories that won’t challenge her too much, might be nice to set the time aside for that.

An example I can think of with one of my sisters is that she always used to make me milkshakes when I was a kid. I liked the milkshakes, but she really love making them for me and feeling she could take care of me. Sometimes, when you are faced with this stuff, the little things can feel big again. Sending love and hugs your way :two_hearts::two_hearts:


#3

Thank you, yes one tradition we always had as a family was getting and eating hard shell crabs in the summer. We plan on doing that one day while I’m with her - she lives only about an hour from a nice crab house on the Potomac. We always have a good time there. I guess the problem I’m anticipating is dealing with her new physical problems, and how to interact with her. I don’t want her to feel like I’m babying her, but I also don’t want her to think I am being standoffish. I know she likes when I cook for her, and I plan to - especially breakfast - but she has always been a take-charge type, and usually leads the way in our days together (even though she’s the youngest!) My sister is being altered in a way her and I have no control over, and I guess I’m feeling a bit helpless in how I can help her best.


#4

Wow… that is just soo very much for you both to handle, on top of the incredible losses you have both experienced over the last couple of years… My heart goes out to you both!!!

The tradition type thing Jen has suggested is a great idea!!

As for not wanting to “baby” your sister, or appear non-chalant about her condition, maybe you could ask her about the CLL, what it means, what help she needs while you are there, how the treatment is affecting her… etc… etc… she might not be the sort of person who likes to talk about such things, but I think most of us find it helpful, even if just to get our own thoughts in perspective… if you let her know that you are having a little trouble processing the whole thing and ask for her help to do so, that might let her see that you are genuinely concerned (although I’m sure she will know that already), also let her know that it’s OK to tell you what she is feeling/going through, it might help you to understand what she needs most.

Just my thoughts… wishing all the best for a fun time with your sister!!! Hugs to you both.


#5

Am so sorry for your going through such an ordeal, remember when went through cancer diagnosis and chemo etc my mother s presence was terribly important. Sometimes just being there and asking what one can do to help, even simple things, means volumes.


#6

Yes, she does like having me there with her. She gets so lonely sometimes. She’s a single mother, and her pregnant daughter is living with her boyfriend right now, but plans to move back in when the baby is due, since they aren’t married yet. She has focused all of her energy and hopes on this baby, and how it will be such a blessing for her. I hope it is. I also know her strength isn’t what it used to be, and babies are a lot of work. I hope she doesn’t over extend herself and offer to babysit too much.


#7

I used to ask her all sorts of questions when she was first diagnosed, but it didn’t seem like she wanted to talk much about it then. Maybe now is the time.


#8

Now might be the perfect time… or maybe not… I guess that will depend on where you are both at when you get there :slight_smile:

Another idea might be to remember some of the things you did together, that at the time probably weren’t so funny, but can now be laughed at… laughter is always a good medicine, especially in the worst of times… More hugs to you both!!