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I agree with stepping back. You don't want to own this problem or get over involved. If she wants you to help her with legal and/or medical issues she can ask and then you can decide.
Surely her doctor has talked to her about her prognosis and she knows, if she doesn't want to talk about or acts too rosy that is just how she chooses to deal with it. I would let it go.
NO. Her doctor has not told her how serious this is, because my sister has said that she doesn't want to know anything "negative" or "about death", because she "wants to be cured". NO ONE is cured of multiple myeloma. Well, .1%. Something like that.
I think she could be in denial because she practically shrieks when any on says anything to her that hints of death, or attempts to talk about her prognosis. Or she really is deluded.
Her SO is doing NOTHING. Her oncologist and psychiatrist have told me that he has never met with the doctors and has never taken her to an appointment. He hasn't called me at all either. Both doctors think he isn't very interested.
Yesterday I called her and she was driving HIM to the dentist 45 miles away where he grew up! They have lived where they do for 20 years and he can't find a local dentist?
Oh, he also doesn't drive. It's a BIG SECRET. She had gust had 3 hours of chemo that morning, then she has to drive HIM to his dentist? Get an uber.
He's not calling any shots. He's doesn't appear to be particularly interested. He could be overwhelmed with the whole thing, and this is just his way of coping. Either way, he is just not involved.
Oh no it sounds like she's got a possible man child who can't handle issues like this. No way she should be driving him to appointments right after receiving chemo. Doesn't sound like he's willing or capable to take care of her as a cancer patient. You talk to her docs, do you have any POAs for her?
But wait, sheena, will she not be having treatment? MM is not curable, but the five-year survival rate has jumped with stem cell transplants and chemo. My friend had her transplant in April, still gets monthly maintenance chemo, and tires easily, but she was still well enough to travel from NJ to meet me in Toronto last month.
Find out what her doctor says. Getting information on the situation is the best way to move forward and counterbalances the exhausting emotional stress.
By the way, interestingly enough, my friend with MM has bipolar disorder.
She is having chemotherapy. I am shocked that she has agreed to it. She is also having a stem cell transplant. Agreed to that, also.
Actually, I think she is having it because she expects to be cured.
I know there have been many strides made since the advent of stem cell transplants used with chemotherapy. My sister is between stage 11 and 111. There are only 3 stages of multiple myeloma. She is also significantly underweight. Her Dr. told me it doesn't look good, and she doesn't have much time. She isn't telling my sister because she has told her that she doesn't want to hear anything "negative" or "pertaining to death".
It's interesting about your friend's diagnosis of bipolar disorder. I did read something about a correlation between serious psychiatric illnesses and multiple myeloma. I will look for it.
Sheena~~ How old is she, is she living with anyone? What kind of treatment will she receive? Can she drive and take care of herself. Sorry, just want some more information. I've been a caregiver for over 20 years, believe I've seen it all.
She's a 18 months younger than I am - 62.5. Lives with a nice but useless friend. Right now she can drive. Chemotherapy and stem cell transplant.
I am exploring different charities that help the relatives of the terminally ill find a place to live, easily.
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I do want to be there when my other sister needs help. When she passes. And to arrange her memorial.
*sigh* Please get a grip. Your sister may outlive YOU. I have known myeloma patients online who were diagnosed more than 20 years ago and are still alive and kicking. Not many I admit.
Staging is far less important in a blood cancer like multiple myeloma than it is in a solid tumor cancer. More important is response to treatment. Unfortunately her doctor won’t know in advance how effective a particular treatment will be. If it fails, he’ll simply switch to another treatment which may be more effective. There are several possible treatments plus clinical trials.
As far as stem cell transplants are concerned, some do not work, some bring many years of remission, others bring results between those two extremes. Some patients don’t have transplants at all and do well without them.
Her SO is doing NOTHING. Her oncologist and psychiatrist have told me that he has never met with the doctors and has never taken her to an appointment. He hasn't called me at all either. Both doctors think he isn't very interested.
Yesterday I called her and she was driving HIM to the dentist 45 miles away where he grew up! They have lived where they do for 20 years and he can't find a local dentist?
Oh, he also doesn't drive. It's a BIG SECRET. She had gust had 3 hours of chemo that morning, then she has to drive HIM to his dentist? Get an uber.
He's not calling any shots. He's doesn't appear to be particularly interested. He could be overwhelmed with the whole thing, and this is just his way of coping. Either way, he is just not involved.
Useless. People like that annoy me. Weak and self-centered. This is the time to step up.
She is having chemotherapy. I am shocked that she has agreed to it. She is also having a stem cell transplant. Agreed to that, also.
Actually, I think she is having it because she expects to be cured.
I know there have been many strides made since the advent of stem cell transplants used with chemotherapy. My sister is between stage 11 and 111. There are only 3 stages of multiple myeloma. She is also significantly underweight. Her Dr. told me it doesn't look good, and she doesn't have much time. She isn't telling my sister because she has told her that she doesn't want to hear anything "negative" or "pertaining to death".
It's interesting about your friend's diagnosis of bipolar disorder. I did read something about a correlation between serious psychiatric illnesses and multiple myeloma. I will look for it.
It does sound as if she's not facing the reality of it. My friend is. She has her eyes set on five years as her goal. She knows it is not curable. She is only 59.
There has been a lot of cancer in her family, so she has no delusions. She was just surprised that it was bone marrow cancer and not colon cancer like most of the others.
I don't know what you can do except prepare on your own to help her through when she has to face the reality.
I have lost a sibling, not to cancer but another long illness. It is hard, even when the relationship was difficult and they had issues.
Offering hugs. Let her know you are there for her. Her bf sounds useless. I think the cancer society offers rides to treatments if she starts to feel too tired to drive.
FWIW, a comment from a long term, 2 time cancer survivor (granted, not MM). She was just diagnosed a month ago. IME it takes a lot longer than a month to gain much useful perspective about a potentially fatal diagnosis. Mentally and emotionally, even for a normally functional person. Not to mention that the people closest to them (like the SO you described as useless) get to go through it too. Coming to grips with mortality in real time is a process. She's been knocked off her feet regardless how stable or unstable they were before. Cut her some slack. No one handles learning something like this about themselves with finesse.
You've certainly heard about the stages of grief/loss right? Denial, anger, bargaining, depression, acceptance. Also that they don't necessarily occur in a set order. If you haven't, I'd suggest reading about it. Educating yourself may help both of you. What she feels about her situation is evolving fast. She's swamped...doctors and all sorts of new revelations, appointments, decisions, fears about treatment, what-ifs and planning for them. If I was in your shoes OP I would stay on the sidelines, observe, don't jump to conclusions or judgements that won't help anything, and make sure she knows your ears are available when she wants them and you're standing by to support her if/when you are asked.
Last edited by Parnassia; 11-25-2022 at 02:06 PM..
This is her road to travel however she wants to do it. I believe she has a partner so they will be making the decisions. I would just be a supportive sister. We must have cross posted as I just saw yours now. My advice still stands that it’s not your monkey’s and not your circus.
The version I learned was “If a person comes into your office with a monkey on his shoulder, biting his neck, make dang sure, when he leaves he still has the monkey.”
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