Chirley - Are you OK?

[Cheryl C]

Hi Chirley - haven't seen any posts from you for a while. How are you going?

[Chirley]

Hi, I'm on here every day but not much to add so I've haven't been posting.

I'm currently in ED at my local public hospital having a blood transfusion. HB 56, neuts .6 This is 8 weeks since my last blood transfusion of three units and last lot of a week of copper infusions.

What can I say.....doesn't look promising re response to copper treatments etc.

I now weigh 41kgs and I'm having a new NJ feeding tube placed on Thursday. Maybe some better nutrition will help the bone marrow failure, who knows.

I have to say, I'm being treated so well by the staff here. So much better than my private facility! Even the hardware like the ED bed, TV, medical equipment etc is new state of the art and incomparable to the private sector. They are even doing neutropenic precautions.....this has NEVER happened at the private hospital.
I'm going to try a vegetable rice paper roll with sweet chilli sauce for dinner! I might be able to eat one bite but I'm going to try.

Thanks for asking after me BTW.

[Cheryl C]

Glad to hear you're still soldiering on, Chirley. You are a courageous lady and I take my hat off to you. 41 kg is tiny - hope you can improve on that!

We've just come back after a few weeks in Victoria due to my father-in-law's final illness and death at 98 years old.

Re public hospitals, to have my infusions I've been in quite a few excellent ones in different parts of Australia. In spite of the media reports, there are some good things happening in the public system.

[Chirley]

I'm sorry to hear of your FILs passing. 98 is a good age but a loss is a loss no matter the age.

Re the public system...yes, they've been good to me, it's just a pity they are so overwhelmed that anything other than emergencies or urgent cases can take years if not a decade to have addressed. The ED Doc wants to refer me to Palliative Care for more comprehensive and timely care so my HB doesn't drop so low etc. I'm fine with that. At this stage I'm more ready to go Palliative Care than active treatment. I'm very tired. Maybe I'll feel better with some better nutrition.....it's a waiting game.

Yesterday I was disgusted to see the ED swamped with people who had self inflicted problems. The woman in the next cubicle had nausea and vomiting from smoking marijuana and required short term IV fluids and potassium. The man on the other side had bleeding gastritis from acute alcohol intoxication requiring IV PPIs. and another man had to stay the night because he was too drugged up to be released after breaking his hand punching the wall in anger when his phone ran out of credit (as you do). I know I shouldn't be judgmental but sometimes I think a little copayment might make people think twice about their actions. Anyway the ED opens your eyes to how our tax payer dollars get spent! Most of my working life I paid 39c in the dollar tax with Medicare Levy on top and then paid my own Superannuation contributions as well and my private health insurance.....and then you have some people who have not worked one day in their lives or paid one cent in tax......and they go into ED and whinge about having to wait! Rant, rant, rant!

[cathybee1]

Chirley, so glad you are still here. You have been such an inspiration for us. Your weight loss is terrifying though.

Hugs, Catherine.

[Cheryl C]

Thank you for your condolences Chirley. Dad will be very much missed. He has also been my father figure since 1981 when my parents died.

As a previous full-time worker, tax payer, super vontributor, etc myself I totally agree with your sentiments re the bludgers in ED and the need for a co-payment.