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not a proud moment

LindyLu
Posts: 72
Joined: Sep 2016

Just needing to vent here.  My doc's office left me a text this morning asking me to confirm an appointment.  I have a scheduled pre-chemo educational session appointment for tomorrow, but the text was for the next day.  I called the office thinking they had just given me the wrong day.  I was shocked when they said it was correct and for my first chemo treatment!  No one had ever called and a chemo date was never mentioned at my post-op almost two weeks ago.   Very upset, I called the office again and demanded to know how they could schedule my first chemo treatment without notifying me.  We live about a two hour drive from the cancer center, so it's almost a whole day outing for an appointment.   One suggestion they had was to cancel tomorrow and come early for my informational session, immediately followed by my first chemo treatment so we didn't have back-to-back trips.  This did not sit well with me and unfortunately I gave them an earful.  Totally frustrated, I was in tears, the schedulers were in tears, and was told I was upsetting the whole office.  I demanded that the PA, who wasn't in the office, call me, which she did.  She could not answer why I wasn't notified about the scheduled first chemo.  Also the office had earlier scheduled two post PET scan tests here in my town for later this week.  Could I even take these tests while on chemo?  No answer for that, either.

Bottom line, we're keeping the appointment tomorrow and my first chemo will be scheduled for next week.  I apologized for my outburst, but looking back, I really went off the deep end.  Not my proudest moment. So now I've alienated all the office staff and the PA and will be facing them tomorrow.  Hopefully they'll think it was just a crazy old cancer patient going hysterical.   Yikes!  Guess I'll just have to go in with a big smile, hoping all is forgiven.  So glad my husband will be with me.

You gals are the best!  I feel better just getting this out.  Because of you and the generous sharing of your personal journeys, I'll be armed with a list of chemo questions.   Boy, a little text sure can ruin your day.  Thanks to all of you!!  ~LL

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

Go ahead and play the crazy old cancer patient card when you need to. It's one of the few fringe benefits of our situation. Good luck with prepping for chemo. You will do fine. 

janaes
Posts: 800
Joined: May 2016

Hey lindylu, As i was reading your post,  I thought of my situation.  First of all, maybe it wasnt during this situation for me, but i certainly had bad moments like that at other times.  But this is what i was thinking.  When i was first starting out in this jurney trying to decide if i wanted to do chemo or not, i found myself in my doctors office asking him all my questions, asking for all of my pathology report and all the other stuff i needed at the time.  My plan going in there was not to start doing chemo, just to ask the questions i needed.  Well  after i was done, the nurse who was there and the doctor was ready to have me make an appointment to get my port in and do chemo.  Boy was i over wellmed.  Luckly my dad told the doctor that i still wanted another opinion. and he relucktantly aggreed.  I left there knowing i needed more time.  I did go home that night and read over the full pathology report and was leaning towards doing chemo but still wasnt sure.  I remember the nurse calling me and wanting to set up the appointment for chemo and wasnt sure still and if i remember right we decided to wait until i new more ( i still didnt know who was going to watch my kids at that time either)  It was my birthday that week she was calling and when i finally decided to do chemo, I told her i didnt want to do it on my birthday and told her the only days i could do it (that is when i could find a baby sitter for my kids) so it was finally worked out but my sceduale did matter too.

Im glad you moved your chemo for a week after your first visit.  What you feel  and need is imortant.  That time after the first doctors appointment was very impotant to me.  I needed it. 

Good luck with your visit

janae

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1801
Joined: Jun 2015

LindyLu - I'm sure everyone at the office understands. This is such a high stress time for you. I'm glad that your husband will be with you. Just a simple apology is all that is needed. Once you go a couple of times, they will see that you are a warm, friendly person and all will be fogotten. Hang in there. It does get easier when you get into the routine and know what to expect. That drive is tough though!

Love and Hugs,

Cindi

LindyLu
Posts: 72
Joined: Sep 2016

It helps so much to have support like you!  I feel awful that I had a melt-down and took it out on those poor young schedulers.  I am a pretty calm and collected person, so it upsets me that I exploded like that.  Your comment, becca, made me laugh...hmmm...a new fringe benefit.  Thanks janae and Cindi for your words of encouragement.  I guess these kinds of moments go with the territory, but this was my first experience with having those feelings come out all at once.

Hugs to you all.  Almost time for my little road trip.  Next, next, next...~LL  

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

LL - maybe you can bring them some cookies or a fresh fruit basket as a peace offering? :) They will certainly appreciate it and will think long and hard before they just text someone next time. Good luck tomorrow and let us know how it goes. Kim

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Sometimes I think the schedulers don't understand the emotional impact of starting chemo.  There was a mix-up in my chemo scheduling as well.  For some reason, they had not noticed that I was to get both carboplatin AND taxol, and had scheduled me for only an hour for the carbo.  I went to my chemo orientation, knowing that my first chemo was scheduled for the following week.  At the orientation, the woman running it came up to me, said they had made a mistake and they had scheduled me for chemo the next day.  I could feel my entire body clench up... I was NOT prepared to do that and I told her so.  Plus, I was recovering from a gastric episode.  And I was already dealing with the massive amount of information they were giving at the orientation.  Luckily, they were able to re-schedule me back in to the following week.  So, don't be too hard on yourself.  I'm sure you're not the first patient who has "lost it."

As everyone has said, just apologize.  Be gentle with yourself...  this is not an easy thing to deal with on any level.

brissance's picture
brissance
Posts: 192
Joined: May 2016

Hey, you are stressed out and the doc and their office realize it.  You understand the situation.  I know you didn't want to hurt anyone's feelings or upset anyone.  Just tell them the facts, "I was so stressed and I lost my cool."  Cookies are always wonderful and gives you a chance to eat some yourself.  Let them know you care for their feelings and then let it go.  It's a side effect, like losing your hair.  You have to be a sweetie or it wouldn't bother you so badly.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Dont beat yourself up to much.  They should understand how stressed you are right now, and they have probably heard it all before.  I think it is very caring of  you to be conserned about their feelings.  i think that bring cookies or fruit is a wonderful idea, one that would win their hearts over and they will see what a caring person you are.

Come here to vent anytime. We all have times we need to do that and sometimes. And we are here to listen.

Hugs and prayers, Lou Ann

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

It's very understandable that you weren't prepared for chemo and the way it was handled. Like everyone has said, I'm sure they have encountered cancer patients having emotional outburst. You will be fine with an apology and cookies. We've all had these moments. Hugs and prayers!

LindyLu
Posts: 72
Joined: Sep 2016

Thanks for all the great suggestions!  I'm ordering a goodie basket today which makes me feel much better.  :)   Hubby and I met with the PA yesterday for pre-chemo educational session and we had a very good conversation.  She totally understood my frustration with the scheduling communication, or lack thereof.  We came up with a new communication plan so this doesn't happen again and all is well!   

There was so much information given... I had no clue.  Having port put in on Monday and starting chemo on Wednesday.  Looks like getting treatment is the easy part.  The pre- and post-chemo "stuff" is another story.   Yikes, it's overwhelming.  I can now see why taking one day at a time is key to maintaining some kind of "normal" throughout this roller-coaster of a ride.

The info I've received here has helped tremendously!!  Thank you, thank you to all you beautiful Ladies! 

janaes
Posts: 800
Joined: May 2016

Your right.  Take it a day at a time.  You will do great!!!!

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

Lindy, One consolation is that each of the ste like dealing with the port will make you stronger by showing you how much you can take! 

rcdeman
Posts: 263
Joined: Aug 2016

Talking about the port, my mom's gyn/onc is planning to give her chemo treatment using IV through her arm. He said she looked like she has strong veins and is hoping she won't need more chemo treatment in the longterm (which would warrant a port then), but I'm concerned about the repercussions of taking chemo through her arm veins. Should I insist she get a port? Seems like most people have preferred the port over the IV via arm. What are the pros and cons of each?

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

I still have mine (chemo ended in May) and will probably keep it for 2 years - just in case. It is no trouble and has saved my teeny veins. I get it flushed ever 6 -8 weeks to make sure it's still working properly.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

it simplifies everything. saves your veins from having to be accessed every time,  blood can be drawn though it.  Can be used for contrasts for CT scans.  I dont even know I have mine. It never bothered me at all, just had to shower with plastic wrap over it for a week.  Mine was put in while I was awake with only local numming.  Actually I have had two, I had the first one removed to quickly, had a recurrence and had to,have a second one.

Hugs and prayers, Lou Ann

brissance's picture
brissance
Posts: 192
Joined: May 2016

My husband never had a port when he was treated for lymphoma.  No side effects.  He did have good veins.  Make sure she isn't dehydrated and drinks mucho water before going in.  Not everyone gets ports, they are easier but not essential as chemo for years and years was given IV.  If she does have problems then you can revisit your decisions.  Good luck and God bless.

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1801
Joined: Jun 2015

I had a port and i'm glad I did. That being said.... mine bothered me the entire time I had it in place. I had it removed 5 months after my last chemo treatment.  I agree with Brissance, please make sure she is majorly hydrated to keep those veins pumped up!  I hope all goes well with your Mom.

Love and Hugs,

Cindi

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I had a port and I was glad that I did.  Taxol, in particular, can do a job on your veins and soft tissue, and I wanted to avoid that.  It makes it very easy for the nurses to administer the drugs.  They were always thrilled when they realized I had a port.

If you have a "power port," draws for blood can be done through them as well as injection of dyes for scans, as long as the techs are qualified to do so.   

The surgical "implantation" was very easy, done under twilight sleep.  It was sore for a few days, but I never even needed to take pain meds.  I had limited mobility for a while with that arm, but that resolved pretty quickly as well.  I had no problems with infection, though some have had horrendous problems. (Cue Eldri.)

It does show, particularly as I am very slender, and I have not worn a lot of low scoop neck tops I would normally, but that's a minor disadvantage.  Since I have elected to keep mine in for a while, I have to have it flushed periodically, which takes about a minute.  Quickest visit to the infusion center ever.

As Brissance said, it's not necessary, but I found it to be a very convenient way to go.

 

rcdeman
Posts: 263
Joined: Aug 2016

Thanks for all your thoughts and experiences with the ports. I will discuss this with my mom and then further discuss it again with the med. onc. We are not sure right now, but I'm assuming that her chemo will probably start as soon as next week (as soon as we get our PET/CT results back and get her checkup with the gyn/onc this Friday.)

Will keep you all updated. Thank you all for your support.  You've all been so helpful. I don't know what I would've done without you all.

Love,
Rebecca

EZLiving66's picture
EZLiving66
Posts: 1479
Joined: Oct 2015

I had a port but had nothing but trouble with it.  It could only be used once - the day after it was installed.  After that, because of being infected, it was never used again.  I couldn't get rid of the infection and finally had it removed.  Then, it still wouldn't heal and I had to go to the Wound Care Clinic.  Now, I have a huge scar with lots of scar tissue and sometimes it still feels like it's burning.  But, that being said, I do not have good veins and all and it was miserable trying to get that needle into a good vein.  One day, it took four attempts before they got it in and then I couldn't move my arm for four hours.

Good luck!!!

Love,

Eldri

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

I have tiny veins and thank God that I did get a power port! I never had a problem with it and it made everything easier, not just chemo but blood tests, scans etc. I kept it in for almost 2 years and never had a problem. Both putting it in and taking it out were done under twilight slep and I had very little pain afterward, didn't need to take any pain medications.

I agree with everyone else, staying hydrated is so,so important. I ended up in the emergency room several time due to fainting from dehydration. Make sure your mom keeps drinking water all day long, not just on chemo day but also in the days/weeks following treatment!

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