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my mother died

Posted by alexandra_k on January 5, 2022, at 16:20:32

In reply to Re: another year of wrongly decided, posted by alexandra_k on January 5, 2022, at 15:58:42

she sent me pathology labs of her blood-work back in Jan or Feb last year.

blood cancer. various translocations, apparently, in the b cells. mantle cell lymphoma was one of the things that was mentioned.

the waikato hospital had their records hacked. they were saying in the media that anyone about to start radiation treatment or anyone on radiation treatment could ask to see a specialist in Tauranga or Auckland or Australia since Waikato could not access their medical records during the hacking event.

I strongly advised her to take full advantage of the opportunity to get a second opinion, at least. to get independent confirmation. another opinion. additional information.

she declined to do so.

i said i would go with her, if she wanted. that i wanted to go with her. that i had questions.

she declined to get the second opinion. she decided to wait until Waikato sorted it's sh*t out. she decided to take my sister (and not me) to her medical appointments at Waikato.

that's her decision.

i don't really understand my mother. we don't have a lot in common in many respects. i find her to be fairly superficial in many respects. enamoured by a pretty face... attracted or swayed by things i don't find relevant. distractors. it's her decision. that's the decision she made.

i did tell her that she should spend her money on medical treatments -- if there is reason to believe the treatments to be effective / to help etc. i mean to say she saved money over years and so spend it on medical treatment if there is reason for that.

she ended up spending more than $2,000 per month for a '-mib' RTK inhibitor made in Bangladesh... It was held up at customs, initially...

After she died I saw how much medication there was all about the house... It got to the point of being impossible to sort out the side-effects from the medication from the initial disease (if any) etc etc.

Anyway... She is dead now.

She became paralysed. Apparently they saw masses on her MRI that made anatomical sense of her paralysis.

They did not show them to me.

But I was not her nominated person. My sister was. My sister who was more amenable to her going into hospice care before (1) assessing the effects of the radiation treatment (which seemed to me to be targeted on her esophagus and jaw rather than her spine) and before (2) a single surgical consult and before (3) a second opinion from hematology oncology.

Like my Father, just decided it was time to curl up and die.

I suppose it was them realising that they didn't have a choice. I would imagine that if she had have tried to get the second opinion they were offering (from Tauranga or Auckland or Australia) then they would have had a million reasons why she wasn't going to get that second opinion. Else, if she did get that second opinion then it would be (maybe as the first one had been) there is only 1 option or 1 treatment which is otherwise known as 'my way or the highway'.

I think maybe she was a little fearful of undergoing a stem cell transplant. I don't know...

I think I read somewhere about some relatively straightforward blood filtering treatment that Waikato has lost it's accreditation on becuase they were killing people rather than helping them with it. If they can't do that then likely they can't do a stem cell transplant.

But I'm sure that people's parents paid so very very very much money for them to get to 'play doctor' for people who don't much want to live. I don't really know what to say.


I went down for 1 week and stayed with my sister in my mothers house while my mother was in hospital. I took a back-seat because my sister had power of attorney for financial and health decisions. So I was sort of watching or observing, really, what was going on...

Then I needed to go back to Auckland overnight... And I was going to return the next day...

And a radiation oncology person was going to phone me, apparently, because they were talking about where she was going to go next... Hospice... Or a private place that could provide hospital level care (since she's tetraplegic)... Or... I was thinking about what I could offer (what various people may be able to with home help also) so that she could go back to living in her own home in a way that wasn't a burden... I wanted to know about the changes of her regaining mobility with raditation treatment or surgery... Or if they stopped immobilising her if that was what was going on (that seemed to make the best anatomical sense of the situation to me...)

So a nurse phones me and asks if I can care for her 24/7/365 and that that is what some people have, from 1 person only who care for them.

And I'm thinking the nurse is some combination of lying and / or insane. I mean that's a better assessment of that than 'I read the newspaper every day'. Becuase that's not physically or psychologically plausible. Not for very many days...

I said I had booked a bus back from Auckland to Hamilton 11am the next day.

They then arranged for her to be transferred to hospice before I arrived at the hospital.


Informed consent.


Yeah, right.


On arriving at hospice my Mother expressed genuine fear about the nasal swab. Said it was painful.

They did it anyway. She did not consent. She visibly pulled back and the person administering the test even commented on how she visibly pulled back.

We have antibody testing.

But we always jump to the most invasive.

There's just no comprehension. Wilful miscomprehension.



One day our leaders will get sick and the vultures will swarm /swoop.

It is the world that they made.


Hey thanks NZ. Thanks for letting me contribute. Thanks for letting me live up to my potential. Thanks for letting me help NZ develop in genuine and good ways. Thanks for nothing.




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