Update on surgery and.......

[Terry]

First, welcome to all the newbies! I haven't been on here much in a few weeks and can't believe how many people I don't know. I'm sorry you have to be here but, happy you found a safe place to learn and share.

So I went for the consult for proton beam therapy in IL about a month ago. Since then they decided that they want me to go to the Cleveland Clinic and have intraoperative radiation by a top colorectal surgeon. Every week for the past 3 weeks they've said we'll be deciding this week, and you'll know if we're going to do that or if you'll have surgery here in Milwaukee and then proton beam in IL by next week. Each week it's postponed another week My tailbone has been hurting for about a week and a half now and that has me worried. When I went to IL the rad/onc. said the node in the sacrum was sitting right up against the tailbone. I'm hoping it's hurting because I've been sitting on my arsh to much and not that the cancer has spread. I'm really frustrated and angry. Today I waited all day, staying off the phone so they could get through and no call. Not until about 6pm when I used the phone for about 2 minutes. They left a message saying the surgeon in Ohio wants me to come there for a consultation. SERIOUSLY!!! That's 1000 miles round trip for another consultation and who knows how many more weeks until the surgery is done. What are they waiting for? It's going to spread into the tailbone or trachea eventually if it hasn't already. I'm really angry that it's taken this long to get me a surgery and tomorrow morning I'm getting this settled one way or the other. I guess if he absolutely wants me to come there before he does surgery I will, I can fly there by myself for a day. I'm not leaving that office without a date for surgery if I can help it.

So that's it, standstill. A year off chemo and they think this crap isn't going to spread. I don't get it.

I'll update after I speak to someone tomorrow. Prayers are appreciated for them to get me into surgery and that this doesn't spread.

Terry

[CRguy]

Prayers are appreciated for them to get me into surgery and that this doesn't spread. Terry

Done, Terry, and huge ++++++ vibes that things start moving ahead on a new plan.
On the Journey
CRguy

[tdsamal]

Oh man Terry I'm so sorry that it is taking so long! One thing that really irks me is the lack of compassion that the medical field seems to have when dealing with our lives. To them it is just a job, but to us it is our lives. I always feel like I am just bothering them to help me save my life. I know that they have to remain somewhat unconcerned or they would go crazy with grief but come on "This is my life we are dealing with" and I need help. Heres to hoping that things can get going for you soon.
Tammy

[Cancerislame]

Praying you get some forward movement on a treatment plan and that your tailbone starts to feel better. Good luck with everything!

Jennifer

[nbrandt]

Terry,
Prayers for a successful treatment plan. Sooner the better ......Thinking of you.
Hope and Prayers,
NBrandt

[tammylayne]

Hey Terry....

I have been thinking about you alot lately. I truly hope you get the answers you need, and these docs get a plan in motion right away.

Sending you good thoughts and lots of positive thoughts...


Gentle Hugs...

Tammylayne

[paula]

Thanks for the update, Terry. Strongest thoughts - this sucks

[Seriously, WTF?]

All of you here are constantly on my mind and "ALWAYS" in my prayers. So don't worry Terry I got you covered. Hang in there!

[Nanette]

Hey Terry~

Sorry you are getting the run around with your doctors. I can hear the frustration in your post and you have every right to feel the way you do. I hope you get the answers you want ASAP and a surgery date is in place.

Sending prayers your way...

Hugs,
-Nanette

[BrownBagger]

Thanks for checking in, Terry. I was wondering how it was going for you.

So sorry about the frustration and fear. We all get that and it sucks. I thought it would get easier to cope, but the deeper I get into this, the harder it's becoming.

Anyway, hang in there, my friend. Good luck getting everything straightened out so that you can get some freaking treatment!

[thiemanndi]

All the best for decisions today, Terry. You are in my thoughts and prayers as is everyone on the forum.
Di

[SkiFletch]

Frustrating for sure Terry, good luck with everything

[JAZZToo]

Terry:

Have they given you any valid excuses for this delay? Wishing you well and I hope you get a decision soon on starting the new treatment (are those MDs familiar with the expression "Nero fiddled while Rome burned" or "---- or get off the pot". Here's hoping that the proton beam therapy does what it supposed to do - tame and eliminate those remaining cancerous areas.

Leslie

[Lee]

Terry,

I too have been thinking of you. Glad to see your update. It's frustrating when there is no plan of action, and to keep waiting like this is in excusable, I hope you get answers real soon.

Good luck with everything and you will be in my prayers.

Lee

[pbyers]

Terry, how frustrating. You are a tough cookie and you will get this handled. You are in my prayers.
Hugs Sweetie!!!!!!!!!
Pam