I was sheltered in oncology...

lol You are too much. 

I started to get addicted to the pain killers last year.  After I stopped taking them the withdrawal was serious.  I would have harsh phantom pain for hours.  I finally realized what it was after 4 times trying to quit and switched to tylenol. After about a week the pain became more tolerable and the tylenol worked much better but that was a week from hell.  I wanted my drugs.  Now I'm fine.  The problem with lowering dosages is you don't know what's the real pain or if you're having withdrawal symptoms which include phantom pain.

I have the best GP on the planet after having the worst.  She listens and when you have a major problem she says to hell with the next patient, they'll have to wait which makes waiting for her worth it because you know she's taking her time with someone who really needs it.  They're out there, you'll find one.

You had more and different treatment than I did but ever since I changed my diet, my pain is gone.  I eat bananas daily for cramping.  I've gotten rid of a lot of carbs (I still eat some but I choose Basmati Rice over Uncle Ben's and sweet potatoes over white potatoes) and I've added more fresh fruits and veggies (which isn't always pretty with this ostomy).  Also organic plain yogurt with grapes and strawberries is just delicious (who knew).  They had a free breakfast at my office one day and I decided to try it.  I've been buying an egg fritata every morning (it's a teeny tiny cupcake shaped egg dish) with a variety of additives like cheddar cheese and little bits of turkey with green peppers which are made fresh each day and they are the bomb.  I want to try to make them at home.  Everything now is also in smaller portions.  I've also added light exercise and am in the process of giving up junk food (sometimes I give in and eat zeppolees).

I couldn't walk without something on my feet at all times for the last year and for the first ten minutes of the day I couldn't put my feet on the floor at all.  I thought maybe it's a circulation thing since my legs are always cramping and so I added the bananas and things seem to have improved.  The other day I walked on a bare wood floor and didn't have to think about it at all.  Not sure exactly what change made things work.  The only thing I haven't been able to resolve is the hip pain.  Oh and also I have to wear gloves if it's chilly out or my hands hurt but I can tough stuff in the freezer no problem.

Without ovaries I've also had to start taking calcium and I had low vitamin D so I'm taking that as well.  I'm hoping that the hip pain improves over time now that I'm taking those. 

annalexandria said:

Thanks for all this info, Helen!

I appreciate it.  I did see a naturopath, who suggested that the joint pain might be due to "leaky gut syndrome" (basically the intestine gets fried by chemo, food particles leak out into places, like hands and feet, where they aren't supposed to be).  She recommended some dietary changes, which I tried for a bit.  I think I need to bite the bullet and do this a little more extensively.

I just love to cook, and to eat, so it may be a challenge!

Good reminder on the calcium.  My ovaries bit the dust as well during this process, but no one has mentioned any supplements to me.

It's rather frustrating, because, my joint pain has diminised considerable since I cut (drastically) down on sugars and bread, but, it is because I cut down on these things, or is it because my body is mending? 

I would say to myself to eat bread again, and see if the pain comes back, but I've got an appointment with my Oncologist on Monday, and I've a awful feeling that I will be back on some maintanace Chemo (NOOOOO!), so whats the point. 

But if it is the bread, and I make my own bread and LOVE it, then I must admit, its well worth the sacrifice. 

Sandi1 said:

Insensitive doctors

I know what you mean, i am my husbands caregiver.  He has been constipated for a while now and has pain from it, after not getting any relief from the laxatives and suppositories that the Onc prescribed, my husband decided that he would go back to the gastroenterologist that actually found his cancer way back in the beginning. So, we go for the appointment, now mind you we hadn't been there since his diagnosis 6 years ago; we did not have to wait long to be called in, and we actually did not have to wait for them to come in - it was the doctor and the intern who is training with him who came and got us.  So, once in there - the doctor starts with saying to us - we have gone digital here so i will have to put your information in the computer and start a file for you. (excuse me, but isn't that supposed to be the secretary's job?) oh well, after what seemed like a million stupid questions, he hands my husbands "paper" file to the intern and says here read this, learn how we treated him. After to questions, he says to my husband, so why are you here today - my husband explains his problem and the doctor says oh, ok - hopefully we can take care of this.  Then says, i see here on your "paper" file that you have/had cancer? my husband says yes, still do - stage 4, you were the doctor that diagnosed it after my colonoscopy.  He started mumbling something to us and his office phone rings - he immediately picks it up.  I'm assuming it is his accountant because he is saying, i know how much things cost.... yada, yada yada.... meanwhile the intern is looking at my husbands file and asking my husband some questions about his surgery and medications - the other doctor turned around and says to us.... shhhhh i'm on the phone - be quiet! well by this time, i'm gritting my teeth - because i don't take kindly to that kind of crap.  so he gets off the phone and doesn't even apologize and continues to ask my husband stupid questions. He says to my husband, you act like i should know all this stuff already?! I almost said to him, well if you had taken a few minutes to review his file before you called us in, you would have known that you have treated him before, but I decided to not say anything because i don't think that i can be nice.  After taking all of this information down he says ok, i think you need an endoscopy, did you eat today? my husband says no - the dr. says good we will fit you in this afternoon, but i can't do it i'm busy - so my partner will do it.  Then he gets up and says to my husband i want to check your stomach, my husband says ok, but please don't press here it really hurts - so what does the doctor do? presses there with quite a bit of force - i watched my husband go pale white from pain. So we go out in the main office fo them to schedule his endoscopy and the doctor puts a "get your colonscopy" sticker on my husbands shirt and then looks at me and says here is one for you and tries to put it on my chest - i backed up and said no thanks, please don't touch me.  Anyway, so my husband has his endoscopy and everything is good. He went back for a follow up (without me) and now has to have a ultrasound on his gallbladder. but wow, i told my husband, that if i had went to see him for myself - i would have walked out as soon as he shhh'd me, maybe even before.  the other dr. that did the endoscopy was no prize either - but that's another story.  Oh and i didn't even mention how he called the front desk while we were sitting there to yell at them for not spelling our last name right and putting a space in our name and no capitals, and then says to them - fix it and hangs up. I mean, come on - that could have waited until we left and a gentle note saying could you please fix their last name. I don't care if he is the best gastroenterologist in the area, when you are with a patient, you are with a patient!  Stupid doctors....

We have had some similar experiences with my husband's doctors too.  We switched in March to a wonderful cancer center here associated with the largest hospital in our city.  When I think back to all those crappy appointments and being treated like they don't know him, his history, or me, I get so mad.  But, it is all water under the bridge.  It's time for your husband to change GI doctors.  I know it is a PITA to feel like you're starting over, but it's his life you're talking about.  Since we now see 3 or 4 professionals before each chemo treatment, every and all questions are answered that day.  There are no broken promises that they will get back to us.  They recommend people in their hospital for all things now like GI, GP, etc. which we have gladly followed their suggestions.  My husband's GI doctor told him in December after his first colonoscopy 1 year after diagnosis "You need to lose weight" all while a large aggressive tumor was growing in his small intestines.  CT scan missed it in early December and no one seemed too concerned he was having so much pain from all they said was constipation.  A NP at the GI office was the only one who seemed to care, getting in touch with him daily and trying different drugs.  Finally an xray in January showed a blockage and she was the one who sent him to the hospital.  No one informed the GI practice of coming to visit him during the hellish 17days he spent there.  When I saw the NP in the hospital hallway, she said she couldn't view my husband's chart because the hospital had not called the practice for a consult.  It was just one mismanaged item of about 100 there.  It took them 8 more days to finally decide to do surgery to remove this monster tumor.  Same thing happened to him when asking them not to press on the left side of his belly - they would all go there like it was a magnet.  What is with those people??

This GI doctor you speak of surely takes the cake.  He was really sushing you?  You all should have walked out.  He's proabbly having money problems, that's why he's taking his own calls.  The way he treats his patients and staff are a good indicator to RUN away from that office.

The problem is when you are in pain and need help, you feel like you HAVE to put up with poor patient care, but you don't.  BTW, the new place we go has not had us fill out 1 stinking form.  My husband had never been there and on our first appt. they already had all his history in their systems and even showed us things on the computer screens I had asked the old place about.  It's amazing what good care is when you've been treated badly.  I feel so much better about everything now.

He's having his 4th Folfiri Wednesday, doing pretty good so far.  He seems to do better each cycle, when he thought he'd be feeling worse each time. CT scan next Monday to see how the chemo is working on his lymph node involvement.  Dr. said he's very confident it will be good news, so we are confident too.

Good luck!

Linda