![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 3 of 3. This is the beginning of the thread.
Posted by alexandra_k on August 20, 2021, at 17:10:49
so, mother has mantle cell lymphoma, apparently. she has several translocations. she is over 80. last few times i've seen her (months ago before diagnosis now) i remember thinking that she was looking a bit... frail.
cathexis? maybe.
anyway...
she doesn't have renal problems or diabetes. she is not obese. she is pretty active. but she is over 80 and last few times i've seen her (months before diagnosis now) i remember that she was looking a bit... frail.
____
i have to be very careful with myself around her. i need to be careful to look after myself i mean to say. she likes dramas. she likes to get a rise out of people. she likes to upset people. to wind them up. so she's quite... provocative. intentionally. emotion dysregulation. she likes to inspire that in others. magnify it. etc.
when i am in a good place i can see what she is doing and regulate. and when she is an a good place she will be... honest? in presenting the things she is having trouble processing herself.
but sometimes... there's something... a bit more... malicious? malevolent? in her just wanting to cause or create upset. and she isn't interested in seeing people handle things she's sort of destructive only.
____
anyway...
she tells me various things... her side or part of the story or whatever.
and the thing...
well... i guess it's the same as dad.
they have given up. accepted they are going to die relatively shortly or whatever. don't seem to have any regrets or whatever. don't seem to have any last wishes. don't want to have a heart to heart. don't want to have a get together...
right.
maybe i'm supposed to fight for them? i don't know. i don't know what i am supposed to do. maybe i am. supposed to show them how much i care about them. i don't know.
____
latest is that she won't be getting a vaccine because her immune system is not working so there would be no point.
she's on a cancer drug. one that is not fda approved for her condition. it is fda approved for her condition as a second line treatement to be employed only after first line treatments have failed.
she was offered no first line treatment. she is paying out of pocket (a few thousand dollars a month or whatever -- which is a lot for her given how stingey she usually is about anything)... she is paying out of pocket for this treatment that is not government funded at all. but this treatment is not government funded as a first line treatment because it isn't even approved as a first line treatment by the fda.
it seems to be killing her blood cells. all of them. she is going in and getting units of blood. to keep her going.
she doesn't want to see me. i've offered to go down with kim but she says she feels cared for by the people in the hospital etc etc.
she doesn't think i care for her i suppose.
i really don't think that she cared for me. so. there's that.
i don't suppose we do personality wise...
but there have been moments? times? she isn't interested in those... guess not...
anyway i offered. it is her choice. her decision.
she gets pissy about that too. she doesn't want it to be her choice. her decision. she wants other people to do it for her. make decisions for her etc. i can't do that... she never empowered me. if that's what she wanted me to be able to do... so...
i don't suppose she makes a great deal of sense, really.
____
it's hard for me to talk to her because every conversation is just...
i have to go numb and turn my brain off i guess.
'yeah, you won't get a vaccine because your immune system isn't working so there's no point' sure. seems legit. seems plausible.
they say you should wear a mask in the hospital but you don't mjuch want to. you realise that it's for your own protection?
oh yeah but you don't much want to. okay. you do you.
_____
anyway... that's that. i guess.
______
what am i supposed to say? i've spent so very much of my life wishing she was dead.
i feel bad about that. feels like a horrible thing to say.
but it isn't so terribly hard to remember how horrible my life was under her control. so...
she'll likely leave her money to hospice or the lovely people who are so lovely to her in her end days...
i suppose that's the point of that.
teaching me a lesson in how people don't want informed consent. don't want to make those kinds of decisions. etc. some don't... i understand that. they don't get medical treatment. medical care. they get 'there there feel better'. and i do understand that it's not a case of 'either or'. ideally... it is both and.
but nzl seems determined to exclude me on the grounds that it must never be about informed consent at all... and it can't possibly be about both.
therefore i must be incapable of the care portion or aspect.
but the thing of it is that the care portion or aspect...
professionalism.
it isn't something you can provide to your family and friends.
professionalism.
because of conflict of interests.
indeed.
_________
i suppose it is good that she is telling me that she is okay and doing okay and she doesn't need anything from me.
since i don't have anything to give.
i guess there is that.
Posted by alexandra_k on August 20, 2021, at 17:24:51
In reply to mothers cancer, posted by alexandra_k on August 20, 2021, at 17:10:49
i guess it is just that they are tired. that is the thing of it.
when i saw my dad he seemed himself... fairly much... the night i arrived. we went outside for a smoke. he seemed thinner. slower to move around. but he seemed himself.
a bit.. vague. but he would be like that, sometimes. he said a few things... about going through photographs.. about how i should take the ones i liked..
i thought... i thought that (since i was staying for a few weeks) that i would have more time with him.
but that was the last i saw him, really. seems to me. until i gave him a hug goodbye when i got on the shuttle to go catch my flight from a different city.
that is to say i didn't really see anything of him during the few weeks i was there... i guess because i wasn't involved, really, in intimately caring for him... and it was too hard for him to get out of bed and walk about...
he was tired.
he couldn't get enough oxygen or whatever. i guess that's it.
i think that's where mum is now, too. tired. not getting enough oxygen. so just sleepy. sleepy in the brain as well. just tired.
just really not thinking really. just tired.
probably i should get kim and say 'let's go see her' if i want to see her.
only it's a lock-down now and we aren't supposed to be travelling anywhere at all... so...
i guess i'll just ring her a bit more on the phone. i guess.
it is difficult.
___
i remember that things changed for me quite significantly after my dad went. psychologically. it took months for things to... ramify...
i wonder how things will change once she goes.
it was freeing... eventually. i quit smoking. got healthier.
until i returned to nz...
then the continual fighting for... the continual fighting while watching everything go from bad to worse to worse to worse to worse...
career-development wise-etc i mean to say.
just not being allowed to do anything at all.. nothing.. nada. not listening to me. nope. nobody home? nobody home! i'm just a stupid child who can't do anything at all -- right? just a slave who must be forced or co-erced into doing things that are not what i intended or wanted to do with my life at all... because the nzl government knows what is best for me (or what is best for itself as the expense of me -- right?) right? right? that's the only possible sense that i can make of why they repeatedly violate the laws in order to ensure i cannot do or accomplish or achieve any of the things that i want and plan and work for...and that kind of... well... being stymied.
and now.. being forced to slave for the courts. sort of writing... well... reading and writing reading and writing reading and writing.
if i wanted to read and write all day i would have finished my philosophy phd and gone onto the philosophy job market internationally...
if i wanted to do that.
but i made different choices...
so hahahhahahahha that means i can be forced to read and write and read and write and read and write for no pay as a slave with no degree...
hahahhahahahhahahaha that's what i get for choosing differently...
that is to say for facing up to there being no choice at all
hahahhahahhahahahhahahahhahahahbecause the government just loves all the things i write about it.
no?
maybe time to stop forcing the writing then?
can i get into doing the work that i wanted to do then?
i could be too busy studying medicine and practicing that to have political opinions at all.
i could be... not needing ot express political opinon at all.
i could be... living my life.
contributing to my community... to making things better...
but instead.
here we are.
____
i guess it will be about the UN and about getting out of here...
i don't see anything for me in nzl.
it is a toxic country and i find myself wanting to drink myself to death, now. it was smoking before.
it's just a toxic country where people are nasty ot each other trying to kill each other and... not caring whether they themselves live or die.
so far as i can see...
___
Posted by alexandra_k on August 20, 2021, at 17:34:43
In reply to Re: mothers cancer, posted by alexandra_k on August 20, 2021, at 17:24:51
i guess the thing of it was that the waikato dhb was hacked into a while back.
it was hacked into around the time that mother was seeing the specialists from there and they were coming up with a treatment plan.
they were saying on the news in the media that because of the hack the specialists in the hospitals did not have access to the online notes. so the pathology reports or whatever.
they were saying specifically on the news in the media that because of that they were allowing cancer people (particularly newly diagnosed) to go to appointments in auckland. that there was the possibility of people starting their new treatment in tauranga. that people were even getting (government funded) treatment in australia. because the waikato dhb was out of action because of the hack.
that is to say... the time when the waikato hospital dhb went down... was out of action...
my mother could have got actual treatment (possibly) if she had got up to auckland.
so...
she could have stayed with kim. and gone into the hospital for treatment.
or... arrangements could have been made for her to have treament in tauranga or even australia.
she just needed to phone this number and say that she was newly diagnosed with blood cancer and the waikato dhb specialist in the appointment basically told her there was nothing they could / would do except take her money for this second line treatment that wasn't even FDA approved...
point is...
mother chose not to do that. not to pursue that.
i said... what is the harm in phoning the number and going out to tauranga for one day and talking to the specialist and hearing what he has to say so you can make an informed decision?
and she decided that whatever they were going to do with her at the waikato hospital was fine with her. fine for her.
so that's her decision.
I was clear with her... so she knew she had options. i said i would go with her. i said i would donate marrow if it would help her... i said i would go with her and say that. and she chose not to.
from a calm place of understanding.
______
i think kim likely would have let her come and stay for at least a little while.. to get treatment in auckland.
so it is her decision again.
i think maybe it is because she wants to be in or close to her house.
i think that is it. her garden.
yes.
This is the end of the thread.
Psycho-Babble Social | Extras | FAQ
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.org
Script revised: February 4, 2008
URL: http://www.dr-bob.org/cgi-bin/pb/mget.pl
Copyright 2006-17 Robert Hsiung.
Owned and operated by Dr. Bob LLC and not the University of Chicago.