I'm not dead yet!

[happystuff]

I echo what everyone else is saying, TMS. Please know you are in my thoughts and prayers.

[catherine]

Oh, gosh, I hope they find either an alternative treatment, or some way to mitigate those horrible effects!! Thank you for keeping us updated--we truly care.

[early morning]

You're in my thoughts, TMS. Hoping for the best possible outcomes for you. Appreciate the updates also.

[frugal-one]

You're in my thoughts, TMS. Hoping for the best possible outcomes for you. Appreciate the updates also.

The same…

[ToomuchStuff]

So Friday, Dr's office called me. Somehow I had gone from approved, to unapproved. This made zero sense as they were not going to start this round unless approved, stated in front of three witnesses.
So the process of figuring out what the heck started Friday. Treatment cancelled for Monday, they called and started trying to figure out on the Dr's end what happened. By the time Monday was done, I was expecting maybe this was the time for the EOL/QOL discussion, as maybe it had to do with my negative reaction, since nothing they were saying was making sense.

When it was all said and done, my retired surgical nurse Mom, was involved, Insurance caseworker, insurance pharmacy, Dr's Pharmacy, infusion scheduler, nurse practitioner, and a couple others. By the time I got a call, knowing what was needed, the office was closed for the day. Mom was going to call her back today, because a piece of paper at the insurance pharmacy, is missing from the Dr's pharmacy. So that has to get transferred then, I have to get rescheduled, and find out if I can even get this infusion again, due to my reaction.
At this point I am ready for the EOL/QOL discussion, as I hate being a burden.

[SiouzQ.]

I'm sorry you have to go through something so difficult. You are in my thoughts; I hope you have a better day today.

[nswef]

Sending peaceful thoughts ToomuchStuff. I am so sorry this is happening

[catherine]

I'm sure your loved ones don't see you as a burden, TMS. People want to return the love that has been received.


My daughter is just starting her cancer journey, as you know, and she literally asked my advice yesterday, as I was sitting with her while she was waiting to undergo another biopsy, "If you needed help, how would you ask for it? And why do people give help?" She doesn't want to be a burden either. The idea of someone wanting to help her was mystifying. We are so attuned to being independent that it is difficult to ask for and receive help, even though it gives as much to the giver as to the recipient. When she asked her brother for help this past weekend, he literally dropped everything he was doing and dashed to her aid because all he wanted to do was to help her. As her mother, everything I can do to help her--watching the baby, taking her to chemo--makes me happy because I love her. In your case, look at all the burdens you've lifted from family, friends and coworkers for a very long time.

I hope you get those approvals and get on a treatment that's best for you.

[iris lilies]

we should all be having end of life/quality of life discussions throughout our life anyway.

[ToomuchStuff]

"If you needed help, how would you ask for it? And why do people give help?" She doesn't want to be a burden either. The idea of someone wanting to help her was mystifying. We are so attuned to being independent that it is difficult to ask for and receive help, even though it gives as much to the giver as to the recipient.

When you actually need help, it isn't difficult to ask, it is more difficult to know WHO to ask. In my case, a lot of the help I have actually had to ask for, was something like changing a delivery date or scheduling a delivery for the day's off of Chemo. (needing to be in the shop first thing in the morning, before others are even out of bed)
Some help is needed because I don't have the terminology/language needed. (legalese or medicalese), where a former nurse, or IRS agents, that I know/related to, are able to help, translate for me.
Same with straightening out our licensing issues ("ti" lazy, always got by with stuff), as the Federal agent that came to see us, worked with another relative and had heard all the junk I had to deal with, and helped.
I grew up with a background of "you don't deserve help, you should be grateful when you get it, when given at the same time, being expected to always provide help, when/where needed". So I very much understand the independent thing.
And there ARE times when someone THINKS they are providing help, that they are actually hindering. Examples in my case are my family coming over to "clean and organize", which involved changing where I put things from utensils, to kitchen items that also double as medical supplies. (food service film)
Three different employees, deciding they are going to do the scheduling, and one employee, just doing his own.
Taking bills, OFF of my desk and deciding there is a "better place" for them. I could probably come up with a few more, but this raises my blood pressure enough.