Jump to content

I Must Be an Idiot as a Caregiver, But There's Hope


Recommended Posts

Long day at the cancer center today....didn't go as I expected.....long story, short.....last week I was told that mom's head CT scan showed "no change" despite about 3 days of my followup on that (we were looking for brain mets due to her increasing confusion issues).....today we met with the center's physician assistant (PA) rather than our regular onc.; I actually got to see the CT scan results today during our conversation and his really good questioning for being new to the case -- she's got 2 mets of note that the PA pointed out, though nothing conclusive can be stated because no initial testing was done on that -- he said I should never have been told what I was told!!!! I am just beside myself tonite on that and have actually had dry heaves and am on the verge of hyperventilating (no joke) on this sort of stuff.....how the heck am I supposed to support with invalid info. from the docs?????? I could just fricking scream......I am doing everything I can and bending for time I really don't have to accomodate all of this garbage already ----- if I had a fireworks explosion to put in this post, I would!

The PA we saw today was a breath of fresh air at least, and both mom and I really liked him -- he is doing everything for followup everyone in here loves to see........we see him again next week and both of us would love to keep him, quite frankly. Tomorrow is chemo (that didn't get done today from timing delays), radiation, and a hospital admit after that for another blood transfusion......geez, Wednesday is mom's birthday too!!!!

I swear I must be horrible at this: I'm tired and just blow up at changes on less than 24-hour notice (transportation is a huge issue and I just can't be there any time someone wants me to be....I do my best, but I am gonna' crash and burn momentarily if "the system" doesn't stop this sort of insane nonsense). But at least I love this PA......going to have some dinner now, sleep, and tomorrow is another day.....breathe, regroup......

Love you all,

Linda

Link to comment
Share on other sites

(((((Linda)))))) You are NOT a horrible caregiver... You are HUMAN. Breathe. You are doing a GREAT job of advocating for your Mom. It's just tough to work the system some days.

Please don't beat yourself up. Your Mom is so lucky to have you by her side.

I'm glad this new PA seems helpful. Use him as an ally.

Link to comment
Share on other sites

Linda you are doing everything right!!!! DON'T BEAT OYURSELF UP FOR OTHER PEOPLES MISTAKES OR WRONG INFO!!! That is not your fault. This person sounds like a breath of fresh Air that you need right now. When you see this person again ask how they can become a member of your team of Fighters. Ya know?! Saying prayers for ya maybe catch ya in chat tonite. Take care.

Link to comment
Share on other sites

Just infuriating that you are not given proper information. When I get exasperated, I go to the charts and read the doctor's progress notes. Then I get squared away with what is really going on. Most of the time I can get copies sent to me with a signature and at no charge.

You are doing all that you can do.

Hang in there. Good advice from above posts too.

Cindi o'h

Link to comment
Share on other sites

Linda,

You are doing a great job. Did you know that you can ask for a copy of the scan results ? We always got copies of them for ourselves. It's helpful to take them home , read over them yourself and make your list of questions at home where you have time to think. Also, taking a list of questions to the doctor with you is a help. I hope things become more routine for you soon. It's great that you have a PA you can communicate with.

Love and Prayers,

Sue

Link to comment
Share on other sites

You are doing a great job and holding it together after learing what you did, is indicitive of how strong you really are!

Don't settle for anything less than the care your mom deserves. Be confident in yourself and your capabilities, KNOW that everything you are doing is out of love and that you are doing the best you can.

Then go scream, kick, cry, vent somewhere- let it all out, remember to take care of YOU during all of this, and then it starts all over again.

It's a roller coaster that sometimes feels like there is no ending...we are here for you.

Hugs,

Link to comment
Share on other sites

Linda,

all us caregivers have been in your position. there

are times I wonder how much longer I can keep it together, but we do.

As sue mentioned you can at the very least get a copy

of the written report of all scans. I have all of Alan's from his

very 1st one. I make notes on them and take my notes

to Alan's appointments. We are lucky that Alan's Dr.

takes as much time as needed at every appointment. Sometimes hours if needed.

Take some needed time for you!!!!

Link to comment
Share on other sites

Good to know I can get copies of the written reports on scans -- been getting the labs, but didn't really think about the scan reports. The PA told me that the onc's office gave me info. not from the final report, but from what was called into them as a preliminary report by phone -- he said they never should have done that because those verbal reports are never what you really need to know. All the onc. had to tell me was something in that regard -- not lead me on for 3 days on this "no change" garbage when even that statement is invalid without an initial scan to compare to.

I do take a list of questions in for visits, just never got satisfactory answers or followup, until yesterday. The PA really has his act together and asked lots of questions to be sure he understood mom's case (he even reviewed her chart the nite before our appt. with him -- how cool is that these days?!?) -- good thing I had mom's meds list with me and remembered a few important dates off the top of my head!!!! He isn't a lung cancer specialist, but he has trained at a major, very reputable cancer center out in these parts that does deal with LC, and has treated many lung cancer patients along with other types of cancer. He's not an MD, but he supports all the onc. MDs at the center we are at -- only been there about a month, at most (he's got years of relevant work history experience, not "wet behind the ears" if you know what I mean).

As I understood it yesterday, we will have to see the onc. (he's the head guy for mom's case), but I should be able to talk with the PA at next week appointment about how I can include him as part of the team better as we move forward (we only got on PA's books again because the onc. is booked up solid next week for appointments -- gotta's make next week count!). I really hit it off with him yesterday and our personalities really seem to click together: for example, he didn't tell mom about the blood transfusion need during her appointment. I got hit with that first as an LPN help was setting up future appointments with me....he walked by and I jokingly said "bad PA, you didn't tell my mom about the transfusion....." He actually stopped, apologized, and we had some more conversation on followup issues for mom.....guess you had to be there. He even agreed with me that Keflex probably contributed to mom's C-diff woes. And I do love that we actually have a future Head CT scan scheduled to watch those spots....finally, it's not left for me to remember as the weeks go by to get such things on the books (that helps)! I've got too many other things on my plate on a daily basis to keep up with everything well, so any bit of early scheduling help like that helps.

I want to use this PA to help me take a hard look at our treatment course now -- I'm hoping I can put a bug in his ear about considering alternatives to taxol since we really aren't getting much results from that, based on what I have learned over all of this time. I tried to discuss that with the onc. before, and got nowhere already. I don't think the PA can actually change anything, but he may be the insider I need to deal more effectively with the onc. on mom's case.

He is really concerned about getting mom to feel better (so she can get through this) and, for once, her symptoms got some immediate attention without my needing to pull the help out of people day after day after day after day..... yeah!

---------------------

Won't be in chat tonite Randy :( : will be getting mom through hospital admit and settled in for blood transfusion during that time tonite. Am scrambling to get tonite's farm needs covered (if I can) as I won't get home until really late -- that's the frustrating part of things changing on me without enough warning and not enough help to fill in my needs. I often need to be in more than one place at the same time and I can't do that.

There is no time for me, dchurchi (Debbie), and nowhere to get that time from. And... Simple, simple, things are a source of major frustration for me. For example, until 24 hours ago, I was going to use time I had today to wrap mom's B-day present, go to the florist to pick out flowers for mom's day coming up (I prefer to create the arrangements rather than buy pre-done stuff....more personal gift that way to me); wrap and deliver a gift to a good friend of my mom's (mom's wish to have that done). Now none of that is gonna' happen and I don't know when it will get done, if at all. May show up with nothing for mom's day at this rate and an unwrapped b-day present tomorrow.....may not even get the chance to pick up the cupcakes I have already ordered for mom tomorrow in time...... sounds stupid, probably. Mom wants counseling now and I had that arranged for today -- that has to change now too.....it just goes on and on and on.

Today is now usual farm chores, get dressed, followup admin. things from yesterday, chemo, radiation, hospital admit, home to finish up usual farm chores, bed -- that will take 14-19 hours to complete everything that goes with that.

Linda

Link to comment
Share on other sites

I hope today is a better day for you Linda. I was taken by surprise when I went in for an appointment afte a routine scan when I found out I had my second cancer. Ever since then, I have gotten a copy of the report before my appointment and made a list of questions if needed. I hope your mom's mets can be managed easily. I think they do gamma knife surgery at that center for brain mets.

Happy birthday to your mom.

Don M

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.