The Colon Club

Gut Wrenching pain - Update

Please feel free to read, share your thoughts, your stories and connect with others!

Gut Wrenching pain - Update

Postby lepperl » Tue Nov 13, 2012 9:30 am

I am in so much pain right now I am wrighting to try and get my mind off of it. This low pelvic pain began last week when I thought I had a UTI. It has progressivly been getting worse and I was just about to the ER point when yesterday it resolved suddenly. I had been popping vicodin like they were tic tacs but yesterday I needed no pain medication at all. Now at 6am today it is back with a vengence. I took two vicodin and I can actually stand up now but the pain is still there. I have an 11am appointment with the oncologist but I have a bad feeling he is just going to send me over to the ER.

On a second note, I spent all weekend fine tuning a letter to the hopital administration and the oncology group about my horrible appt with the clinic on friday. I carefully went through every screw up thats happened over the past 15 months. I tried to be really diplomatic and highlighted good experiences as well as bad. I showed up at the office yesterday to go over all of it with the manager. I managed to stay calm as I explained the situation to her. I did break out into tears when I stated that I sat there quietly, putting up with that jerks poor treatment of me, only because I was desperatly clinging to the hope he may have an option for me. As a matter of fact, when I look over the mishaps of the last 15 months I can hardly believe the crap I have taken. Of course she was appauled. I explained my only goal was to remidy this situation. I don't really want to have to find another oncologist. I will be seeking other opinions but in the meantime I do not want any delay in treatment. I even told her if she could remidy the situation I most likely would never even mail the letter to the CEO and Director of Nursing at the hospital. I also made sure to tell her not to mistake my calmness for not being mad. I am very angry. But I figured if I went in there screaming and yelling I would get noware. Now today I get to see the Doctor after I am sure he has by now read over my 4 page rant. This should be interesting.
Lori
Last edited by lepperl on Tue Nov 13, 2012 2:04 pm, edited 1 time in total.
8/11CRC Stage 4 Nodes KRAS+ Signet Cells
10/11xelox
irinotecan
Folfiri,avastin
10/12 xeloda,avastin
"It will be said that she stood in the storm, and when the wind did not blow her way, and surely it had not, she ajusted her sails" Liz Edwards
User avatar
lepperl
 
Posts: 389
Joined: Fri Jul 13, 2012 10:17 pm
Location: ohio

Re: Gut Wrenching pain and oh-I let them have it

Postby Maia » Tue Nov 13, 2012 9:39 am

Lori, so sorry you're in pain right now... hang in there until your doc appointment, he or the ER *must* be able to help you!
You did very well with the presentation of your case. I'm positive you'll get good treatment --and you have helped others, be sure!
User avatar
Maia
 
Posts: 1383
Joined: Fri Aug 24, 2012 8:00 am

Re: Gut Wrenching pain and oh-I let them have it

Postby janklo » Tue Nov 13, 2012 10:24 am

Lori, I'm glad you wrote that letter! That's very therapeutic in itself! But I also think you should mail it. The 'powers-that-be' need to know about all these issues so they don't happen to another patient. I hope they take them seriously and act upon the items you list. I agree that it's ridiculous we have to beg HIPEC docs to even talk to patients.

Hopefully they can find a fix to your pain issue soon!
Mom to 28 yo daughter
colectomy 2/22/10, stage 3C, signet cell
7/2011 peritoneal mets
HIPEC September 2012, difficult recovery
Hospice 10/31/2012, Died 11/16/2012
janklo
 
Posts: 1455
Joined: Wed Mar 03, 2010 11:10 pm

Re: Gut Wrenching pain and oh-I let them have it

Postby some » Tue Nov 13, 2012 11:55 am

Lori,

I am praying you can catch a break. You have had a rough time lately with the stents, infection, the doc appt of Friday and now this pain. I am praying they can find out what is causing the pain and do something to fix it so you don't have to rely on the pills. I am so happy you stuck up for yourself and continue to fight for the right treatment.

I think you must be at the doc by now and I hope it goes well.

Sending good thoughts you way. Please let us know how it goes.

Best to you,

Serena
DH (age 41) diag Stage IV mets to peritoneum - July 2012 (undetectable on CT PET or MRI)
Folfox 7 & Avastin started July 2012 CEA, CA 19-9 not indicators
HIPEC surgery 1/18/13
Folfiri/Erbitux - March 2013
Lots of prayers.
some
 
Posts: 578
Joined: Thu Jul 05, 2012 1:39 pm

Re: Gut Wrenching pain and oh-I let them have it

Postby Sandygma » Tue Nov 13, 2012 12:35 pm

Lori,

I just sent you a private message on CSN board to tell you what has worked for us with my daughter. I can't believe how you were treated at the Cleveland Clinic. You need some answers and soon. I hope you start feeling better very soon.

Sandy
Sandygma
 

Re: Gut Wrenching pain - Update

Postby lepperl » Tue Nov 13, 2012 2:15 pm

I went to the doctor and they treated me like a queen. I have never seen such good care. I guess it paid to write that letter. They gave me oxicodone for pain and they are calling the insurance company about starting regorafebin. I did start crying when he said the vicodin was just not enough and I needed oxi. I feel like a druggy. I am so afraid I am taking medication that is too strong too soon. I am afraid I will be immune to it when I am at the end. He assures me that is not true. He encouraged me to take the medication and control my pain. He reminded me that the only people who get addicted to pain meds are those who use it and don't need it. This is so hard for me because of my ER experience. All I see is drug seekers. I have also seen several nurses become addicted to pain killers and end up in a world of trouble. I know this is rediculous to compare my situation. And if I was taking care of a cancer patient I would also tell them to take the medication. Its just hard being on the other side of the fence.
Lori
8/11CRC Stage 4 Nodes KRAS+ Signet Cells
10/11xelox
irinotecan
Folfiri,avastin
10/12 xeloda,avastin
"It will be said that she stood in the storm, and when the wind did not blow her way, and surely it had not, she ajusted her sails" Liz Edwards
User avatar
lepperl
 
Posts: 389
Joined: Fri Jul 13, 2012 10:17 pm
Location: ohio

Re: Gut Wrenching pain - Update

Postby some » Tue Nov 13, 2012 2:28 pm

Lori,

You are being way too hard on yourself about the pain meds. You are in pain, right? So, take the pain medication. My mom used the fentanyl patches when she was very ill. She also was put on liquid morphine. All she wanted was to be comfortable and not in pain and that is all. no one thought twice about it and if they did they didn't say so and I would have said screw em anyway.

I just hope they can find a way to stop the origin of the pain. I am worried for you.

Hope the regorafenib works out for you. Where are you going for another opinion in the mean time? Have you considered MD Anderson?

Thinking of you. Please take good care of yourself as that is priority number one. I also think you should look into getting on permanent disability so you can focus on your treatment needs. You can come off of it when you are feeling better.

Best to you.

Serena
DH (age 41) diag Stage IV mets to peritoneum - July 2012 (undetectable on CT PET or MRI)
Folfox 7 & Avastin started July 2012 CEA, CA 19-9 not indicators
HIPEC surgery 1/18/13
Folfiri/Erbitux - March 2013
Lots of prayers.
some
 
Posts: 578
Joined: Thu Jul 05, 2012 1:39 pm

Re: Gut Wrenching pain - Update

Postby mackswife » Tue Nov 13, 2012 3:45 pm

Lori, I am so sorry to hear about the pain you are experiencing. And I applaud you for taking the initiative to address very difficult issues with your health care team in spite of your physical pain, as I believe many patients will benefit from your specific, diplomatic assessment of the problems you have experienced. That being said, I also want to encourage you to take the stronger pain medication. I assume oxicontin is what has been ordered. If so, it is a long acting medication that will keep you from feeling like you are "popping pills like they were tic-tacs".
Uncontrolled pain compromises every coping mechanism, and just generally sucks the joy out of life. I so hope you will be able to find some relief soon. You deserve it!

Pattie
Husband IIIC; T4/N2b: poorly to nondifferentiated
Resection 7/19/12
Folfox 8/12 - 1/13
CT/PET scans 4/13, 9/13 - NED
CT scan 3/14 - liver and retroperitonel node mets.
mackswife
 
Posts: 173
Joined: Fri Aug 17, 2012 7:11 pm
Location: Atlanta, Ga.

Re: Gut Wrenching pain - Update

Postby SkiFletch » Tue Nov 13, 2012 4:33 pm

Having been the "genious" that has tried to play the "take it like a man" card with pain, I'll encourage you to take the pills if you need them ;). Although I do still try and just power through pain, I am getting better about taking pain meds when warranted. When you find one that does work (for me it's oxycodone), take it. You'll be a much better person if you do.
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married :D

"Can any one of you by worrying add a single hour to your life."
SkiFletch
 
Posts: 6307
Joined: Mon Dec 07, 2009 3:39 pm
Location: Buffalo, NY

Re: Gut Wrenching pain - Update

Postby ttisme1854 » Tue Nov 13, 2012 7:20 pm

Lori,
I am new to you and your journey, so I am not familiar with your problem at the clinic. But if you felt strong enough to write a letter, then the letter needs to be mailed up the food chain so the problems can be remedied. I had trouble with a nurse at my clinic, during treatment. Twice she missed my port and told me OOOPSY, couldn't see it. I have no excess body fat and my duel port is highly visible to my 2 year old grand child. When I told her she was not under any circumstances touching me, she got nasty. The first time she missed, she dumped all the hemperin for my flush, into my chest, I had a third boob for days. Anyway, i wrote a letter, and gave it to the office manager. Seemed that she was being unprofessional and uncaring to a number of patients. Guess Oncology wasn't her forte.

Take the pain meds! I am one that by the time I feel the need for pain meds, its a 10 and I am screwed. Docs look at me as I am crazy when I turn them down, when others would be holding out their hands. No one is going to judge you, if its medically necessary.

Take care,
Teresa
ttisme1854
 
Posts: 16
Joined: Wed Nov 07, 2012 1:34 pm
Location: Norfolk VA

Re: Gut Wrenching pain - Update

Postby juliej » Tue Nov 13, 2012 7:31 pm

SkiFletch wrote:Having been the "genious" that has tried to play the "take it like a man" card with pain, I'll encourage you to take the pills if you need them ;).

I also have the "take it like a (wo)man" issue. After my LAR+liver resection+HAI pump surgery, the male nurse told me -- in explicit terms -- that I needed to not be so macho and take my damn pills. He said I'd heal faster if my body wasn't stressed from the pain. My feeling is that your gut doesn't like the pain anymore than you do and will fare better with some relief. Sending prayers and good energy your way!
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 6/6/14, CEA<1
User avatar
juliej
 
Posts: 1955
Joined: Thu Aug 05, 2010 12:59 pm

Re: Gut Wrenching pain - Update

Postby tammylayne » Tue Nov 13, 2012 10:19 pm

One of the first things I was taught at my cancer clinic is that no cancer patient needs to be or should be in pain. There are pain management specialists that are all about keeping patient's pain free, and if they recommend a certain drug....there is a reason.

At some point, you need to not worry about what others might think, and instead concentrate on what makes you feel better. With all of the other stuff that a cancer patient has to deal with...why allow pain to use up your precious strength???? If the meds make you feel better...take it. If anyone passes judgement, I would bet they have never been a cancer patient...and therefore....there accusations don't count. Period. In fact....no ones accusations count. This is your journey,,,your pain and essentially...your relief.

This sounds harsh, and I apologize if it offends anyone, but I really don't think that anyone laid in their final hours wishing they had suffered more, had more pain, taken less pain meds...and I doubt any caregivers wished they had been less supportive when it came to pain meds.

Be comfortable...find what works for you...and remember you only have YOU to answer to,

Please take care.
51 F
'06 Stage 1 CC,
'10 Stage 3 Rectal

"You never know how strong you are until you have to become your own hero."
tammylayne
 
Posts: 1862
Joined: Fri Jul 16, 2010 9:24 am

Re: Gut Wrenching pain - Update

Postby michelle c » Tue Nov 13, 2012 10:33 pm

Hi Lori,

I'm sorry that you have been in so much pain. Please don't be so hard on yourself about the pain meds. In no way should you compare yourself to others.

I'm so glad that you wrote that letter, you were only stating the truth and making them aware of how you have been treated. I hate dealing with incompetency! Good for you! Pleased to hear that you were treated like a queen, about time too! :D

Love and hugs,

Michelle
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair
michelle c
 
Posts: 1467
Joined: Wed Dec 02, 2009 3:58 am
Location: Australia

Re: Gut Wrenching pain - Update

Postby janklo » Tue Nov 13, 2012 11:12 pm

Lori, I'm sitting there watching "the end". Trust me, although Lauren's abdominal tumors are growing and pressing on her internal organs, she has not complained of pain at all. Shes on a diladid drip and they keep increasing it every couple days when it seems like she might be frowning or indicating pain since she can't communicate anymore. They tell us not to worry, they still can increase it more so no pain will ever be felt.

Take your pain meds and use your strength to fight cancer, not pain!
Mom to 28 yo daughter
colectomy 2/22/10, stage 3C, signet cell
7/2011 peritoneal mets
HIPEC September 2012, difficult recovery
Hospice 10/31/2012, Died 11/16/2012
janklo
 
Posts: 1455
Joined: Wed Mar 03, 2010 11:10 pm

Re: Gut Wrenching pain - Update

Postby jacekica » Tue Nov 13, 2012 11:20 pm

Take the meds, you can not be used to them with your dx and knowledge, you are strong person, and pain sucks all energy out of your body and mind. My doc told someone I know that we are not the people who get used to pyin killers - we have a good reason to take them - so take the pill
Hope they will found the cause of this horrible pain you have.
Dx 2/11
surgery 5/11, T2N0MX, G2, SRC rectal ca, 22 cm removed
CT- numerous mets in abdomen - LN, 2 big ones on pancreas, one penetrated right urether. Surgery, they just take samples for PHD, 6 roundds 5FU, refuse further chemos
jacekica
 
Posts: 689
Joined: Sun Aug 05, 2012 12:43 pm


Return to Colon Talk - Colon cancer (colorectal cancer) support forum



Who is online

Users browsing this forum: Bing [Bot], exaussie, Google [Bot], hdridin'fool, nicola smith, radnyc, schellenberg, Yahoo [Bot] and 26 guests