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Venting, screaming, crying and everything. Super long post

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hello Dearhearts,

I was planning on posting an update to the ct scan. Well, I have an update of sorts.

I had the scan on tuesday, after numerous tries to get it set up sooner. the onc "had" ordered it the previous Wednesday!
As I mentioned earlier, the scan was a breeze. No problems and the nicest folks.

Well today, thursday still no call from the onc about the results. Hubby has put in calls to the onc daily!
The pain remains steady and at times debilitating. We really need some reassurance and or answers. I hate to continue taking so many strong narcotics. But if I don't I'll be in a really bad place.

Today I thought I was having some sort of heart issue. Not a heart attack, at least I don't believe so, it happened twice today and also the day before yesterday. of course, we cannot get any response from the team at the cancer center.

So out of desperation I called my regular doc. What an amazing guy he is. He is the one who got me the first scan right after I saw him, which led me down the path that I am on now.
Anyways, I thought I should ask for a CBC since my counts were low before surgery and now I am so weak and pale. maybe I would feel some better if I had some energy?? maybe i have a small bleed going on? who knows??
I asked his nurse to order one for me, no problem, done.
Then the doc called me right back, I didn't expect that. I told him why I was wanting the CBC and explained about the pain. His first question was "when did I have the surgery?"

I was told that any and all things that happened at the cancer center, would also be sent to him. He is after all my regular doc. So I just assumed he knew everything that has been going on. No! He knew nothing! Had not received one single paper, lab result, path report Nada Nothing!! He was pretty flipped out about that, as was I. Everytime I had to give my info to someone at the center, I also made sure that his name was included to receive copies of everything. What a bunch of ****

So after much explaining and through many tears, I at least feel like I have someone besides me and hubby who will fight for me and make sure that things happen when they should and just make sure that I am okay. Because I do not feel okay.

I felt so good about the new oncs and going to the cancer center. I always tried to avoid that hospital if possible. Even went as far as Texas to avoid dealing with them. But I thought this time would be different.

I feel so lost and a bit betrayed by the system. Plus it does not make me feel very confidant that all will contine in a positive manner.
I know that ultimately it is up to me what steps I take. This crazy tumor, really two different tumors have about a 50/50 split on the best research docs suggested plan of treatment. Great! Just what I need, docs who are undecided too. So, yes it comes down to me. But who do I trust to help me with all this. How much more can I really take.
I am a complete mess due to the amount of pain and stress I am dealing with. I know that I don't have to decide anything right now, just heal and rest. But I don't want to wait to long. Given my history with cancer, I am leaning towards using what ever big gun blasters are available. I would hate to wake up in say a year and find out that one tiny microscopic cell travelled to my liver or anywhere for that matter. all because I did nothing else.

So this is my update of sorts. I really don't know anything different. I will have the new lab results tomorrow in the AM. Reg doc is really good in that department. I'll let you know.

Thank you for letting me get this out of my system. I have been all over the map tonight. Sad, angry, really pissed off, giving up, ready to fight, you name it, I have been there.

Thank you all for your continued prayers and loving support. I sure seem to need a whole lot lately.

Hugs to each and everyone of you. Great big (((hugs)))
Lisha

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Hey Lisha, what a mess! you know that the biggest advocate in your health is you unfortunately... it's good that your regular doc is "in the loop", I don't have that, sad. Let them explain your treatment options, and make the choice that is right for you. Hard I know. I realize that this is so difficult to deal with, but it's what in-front of you, stay strong and focused on getting better! Praying for you all the time Vinny

jimwins's picture
jimwins
Posts: 2020
Joined: Aug 2011

Hi Lisha,

I'm sorry that on top of the pain and recovery process you're enduring
in addition to all the crap cancer brings, you're having to deal with
this stress related to your care.

Especially now, you shouldn't have to be worrying over these things
for gosh sakes! Please vent and share all you like.

I did a little research for patient advocacy in California and didn't have
a lot of luck - mostly schools/education programs. Surely there is someone
who can help you guys. I suppose at a minimimum, you can complain to the
appropriate department where you have received "care". I'm sure there
are some good people there - just sounds like some real issues in their
system? I'm so sorry you're having to go through this mess.

I hope you get answers and relief soon, Lisha.
Keep us posted.

Hugs,

Jim

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Lisha,

I don't know if you're up to traveling even the 5 minutes to the Cancer Center, but my butt would be there front and center. Don't leave there till you see the doc. Make a scene if you have to, you have every right at this point. They need to understand that you mean business. There is no excuse that your primary doctor has no information from them, it's unacceptable.

I am so sorry you are suffering like this. It breaks my heart to know how frustrated and miserable you are. Just try to keep the faith sweetie. You'll get through to the other side.

My thoughts and prayers are with you honey!
Beth

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1080
Joined: May 2012

Beth,

That's how we do things in Dixie !

Max (in SC)

.

miss maggie
Posts: 929
Joined: Mar 2010

Dear Lisha,

Your post wasn't something I liked reading this morning. I know the hospital was given
all the information by you to be sent to your doctor. That's just the way you are. If you were feeling better you might have checked to see if they did what they were suppose to
do. This wasn't the case. Now you know. In the event you ever have to have something
done in the future, give Keith a list of things to do before, and phone numbers for him to follow up on. Damn them. Knowing how much pain you were in, and not calling you with the results
of the scan. You know I had my Pet CT scan July 30. I was told by the technician the results would be in the next day. I chose to wait until I saw the oncologist the following
Monday.

I see you posted this today, Aug 10 in the early AM. I assume you spoke with your regular
doctor yesterday. Your doctor should be calling you today with the results of the scan.
Is it possible for Keith to call again, and if not, go to the hospital to get the results?
If he has to, let him make a scene on your behalf.

Let me explain my situation. I am being treated by Montefiore, Albert Einstein Hospitals.
When I was dx my doctor referred me to their cancer center. He is also connected. Therfore, any treatment I receive he is able to get my information from his computer.
Also, when I was notified I was having a Pet CT scan, I was able to email my internist
directly and inform him of this. Montefiore, Albert Einstein hospital is a top teaching
hospital and has the very best doctor's. There might come a time when things might change
for me. or maybe some other health problem. Maybe a better doctor at another top hospital. Therefore I have other options in New York City. Then I would have to make sure any treatment I receive is forwarded to my internist. Since I get copies of everything by
fax ( I have a fax machine ), I would make sure I faxed the results to my doctor anyway.
My choice of a hospital network would be Columbia, Cornell Pres. hospital in NYC. I know
Sloan Kettering is a top choice for others, but I prefer Columbia.

God Bless you. I hope this works out for today. Yes today. Love and hugs Maggie

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1080
Joined: May 2012

Maggie,

You mentioned Einstein (hospital). Einstein lived in the US a few years at Princeton before he died.

He was often found wandering side streets at night, unable to get himself home. Police knew the routine... He once lost a $5,000 check from a speaking engagement. He had used the check as a bookmark, and re-shelved the book. He never knew the check was missing; a friend found it at random.

Max Plank, a physics researcher and friend of Einstein's, would often forget how to do multiplication problems when explaining the theory of relativity to his doctoral students.

My point is just this: Everybody loses stuff. I lost my mind years ago...

max

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1080
Joined: May 2012

Lisha,

It is the world we live in. Why do you think patients are advised to write on a limb that is about to be amputated "Cut this one off," and to write on the other "Do not cut this one off." Why do you think nurses ask you your birthday every 30 minutes ? It is not because they want to send you a card.

My favorite story about mix-ups regards 9-11. Within a few days, all of the terrorists on the planes IDs were known, and some of their background info had already been published in the papers. Well, about six months later, the U.S. Government sent visa renewals for the dead terrorists to their flight school in Florida !

If the government will send visas to the most notorious, deceased terrorists in the world, then nothing much surprises me.

It is all who you talk to. I had a blood panel drawn recently, and called and learned my doc and his nurse had left on two weeks vacation, and that results were "unavailable."

I called back the next day, got a different receptionist on the phone, asked her to read me the results over the phone, and she did so!

I bet if you asked a nurse in the hospital, "Honey, will you please bring me the CT summary off of my chart, she would do so. Better still, ask her to print you a personal copy.

max

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Lisha , I know it must be horrible feeling like your oncs don't have your back. If you can't trust them you need to move on. I am waiting to hear the results. I will pray right now for you Joanie

onlytoday's picture
onlytoday
Posts: 586
Joined: Jun 2010

Sorry to hear that you are going thru all of this. You certainly don't need the stress. Keep us posted on how things are going!

Big hugs to you!
Donna

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

I have been reading, with distress, all that you are going through. It is my wish that you, and all the other survivors on this board will have speedy recoveries.
I'm guessing I missed an update but I did see that your original pathology was benign. Did something change since the surgery? If so, I am so sorry that you got those results. May you find the strength to battle during your recovery and best wishes for the next step.
Cathy

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Dear Lisha,
So much frustration to have to deal with on top of everything else! I am so sorry! We've talked about inconsiderate/neglectful doctors etc, during our private conversations, so you know how I feel about the medical system as a whole...feels like we are just numbers on a chart! I have no answers, but have faith you will make it through this....us Libra's are not quitters! Call anytime my friend...I am here for you...even while on vacation.
Love you...Sue (FNHL-2-3A-6/10)

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