I'm so tired of this! (Venting again!)

[Chelee]

I have no one else to complain to that would understand...so unfortunetly I will do my whining here. (Maybe I could have a little cheese with my wine.) :)

I am regretting every having had this surgery to my femur! All it did is cause almost a 3 month delay in starting my chemo. It's caused me unbearable PAIN! Since starting the Navelbine it's been very tolerable which means I COULD of been enjoying myself all this time. But due to the hip surgery I can't do anything! I'm just stuck in the house attached to this darned walker & I hate it! It doesn't seem like its getting any better.

The Ortho surgeon never once implied I wouldn't be walking on my own LONG before now. This is really ticking me off if you can't tell. Time is going by while I just SIT here every day. I can't walk my dogs, exercise, grocery shop, run needed errands...nothing! Heck, I can't even do much needed house work. The house is a pig sty and I'm just fed up with this entire ordeal. Time as you all know once dx with bc is valuable. When I think of all I could of been doing all this time I really get angry!
My onc and Dr. Slamon's NP both said before I had this done that they did NOT see anything on my x-rays or scans to make them think my femur would break. I'm starting to wonder if this surgery was really that necessary at the time?!

The pain I had in my right hip prior to the surgery wasn't that bad. Easy to live with. Now that pain is off the charts...it's killing me and it is 40 days post-op today. Shouldn't it be getting better by now! I take eight Norco a day for pain...along with Hydromorphone 4 mg every 4 hrs. On top of Ibprofin throughout the day. My hip is killing me, and right above my knee where he put in screws or whatever hurts like heck!

The ortho sure didn't tell me much before the surgery. He made it sound like I'd have a few days of pain after surgery and that would be it. The way he presented things to me I assumed I'd be walking on my own about 14 days after surgery. (But not even close!) I can just now take baby steps without my walker or cane but it's so painful I don't even try. Maybe when I started the Navelbine 14 days post-op that affected the healing of my hip which is why I still have so much pain? I have noticed since the chemo the hole that had the JP drain is still barely healed up since the Navy beans screwed up my counts. It's just a big scab...and after 40 days it should of been gone. I just still wished I'd done a few months of chemo FIRST...then had this surgery if it was even that necessary. I am just so down and depressed...this is going on forever. I'm so tired of just sitting here every day waiting to go have chemo every Monday. Life is just passing me by. :(

Sorry for the venting...but I can't even tell you how ticked off I am about this whole situation. They said repairing the femur BEFORE it fractured would be so much better...I'm really starting to question that. Easy for them to say since their life goes on and I sit locked up in the house. :( (Ok...I'm done whining & complaining for the moment.)

Chelee

[Jackie07]

That's a good whining exercise, Chelee. :) You have stated the facts as well as your state of mind. You are considerate to other people - 'Sorry for the venting'. Excellent piece - only a veteran warrior could have done it!

Take care and know that we heard you and will continue to keep you in our thoughts and prayers.

ps. Please be patient with your hip. I know how hard it is. My Father-in-law was very impatient and 'prescribed' exercise himself after his hip replacement surgery. Being an ex-coach who had seen and helped many of his young students with fractures and cuts, he figured he knows everything the doctors know about. But he was over 75 at his first hip surgery - a totally different situation from injured young high school athletes. He ended up having a second fracture and had to get it repaired again.

[Yorkiegirl]

Chelee there is one thing I don't understand,most people that I know that have had the kind of surgery you had, have gone thru
Physical Therpy and this help's a whole lot with the pain and being able to walk again.
Is there a reason this hasn't been ordered for you? I would certainly ask about this. I'm sorry you are having so many problems.

[BonnieR]

Chelee, I hear your frustration! I wonder if some vicious circle is going on too....where you need the pain meds but at the same time they may be causing depression and contributing to your down mood. Maybe interacting with other drugs. Is there someone with whom you can review your meds? And has been mentioned earlier by Yorkiegirl, should not more PT be offered?
Lastly, try not to second guess your decisions. I know that's hard. I am big on "shoulda, coulda, woulda" but it is seldom productive for me. Just take it from here, a day at a time. And keep the faith. I know that's hard too.

[Lien]

Hi Chelee,

I'm so sorry you are in so much pain. It seems that either the doctor hasn't told you exactly what to expect, or he has been as surprised by your lack of progress as you are. Anyway, he should be discussing your options and helping you make a plan for further treatment.

If your ortho surgeon isn't helping here could your GP help out?

It's no using thinking that you might have been better off if you'd done chemo first. Perhaps neo-adjuvant chemo would have caused the healing to slow down even more. Or perhaps you would have fractured that femur, making it even harder to fix it. I think a substantial part of your hip/femur was affected by mets, so the healing process could well be affected by that. You made a choice based on the facts you had at the time and I think I would have come to the same decision you did.

Unfortunately it's not working out the way we wanted it to. That can't be helped. But we can look forward. You did get the leg fixed, you are getting chemo and Herceptin, you are fighting your mets.

Pain makes us desperate for relief. We would do anything to be rid of it. We want to move away from it. But second guessing yourself is not going to make the pain go away. Taking good care of yourself, trying to stay calm, and deciding to look forward are the only things you can do about it. If you are upset, pain becomes worse, so please try to do something to relax a little. If venting helps, please go ahead and vent. We are here for you.

Perhaps PT could help you cope better? Could you get some help with your errands and housework? These are questions you could try to concentrate on.

I hope you find some relief soon! Sending waves of healing energy and love,

Jacqueline

[Lien]

Hi Chelee,

I'm so sorry you are in so much pain. It seems that either the doctor hasn't told you exactly what to expect, or he has been as surprised by your lack of progress as you are. Anyway, he should be discussing your options and helping you make a plan for further treatment.

If your ortho surgeon isn't helping here could your GP help out?

It's no using thinking that you might have been better off if you'd done chemo first. Perhaps neo-adjuvant chemo would have caused the healing to slow down even more. Or perhaps you would have fractured that femur, making it even harder to fix it. I think a substantial part of your hip/femur was affected by mets, so the healing process could well be affected by that. You made a choice based on the facts you had at the time and I think I would have come to the same decision you did.

Unfortunately it's not working out the way we wanted it to. That can't be helped. But we can look forward. You did get the leg fixed, you are getting chemo and Herceptin, you are fighting your mets.

Pain makes us desperate for relief. We would do anything to be rid of it. We want to move away from it. But second guessing yourself is not going to make the pain go away. Taking good care of yourself, trying to stay calm, and deciding to look forward are the only things you can do about it. If you are upset, pain becomes worse, so please try to do something to relax a little. If venting helps, please go ahead and vent. We are here for you.

Perhaps PT could help you cope better? Could you get some help with your errands and housework? These are questions you could try to concentrate on.

I hope you find some relief soon! Sending waves of healing energy and love,

Jacqueline

[vlcarr]

Dear Chelee,

I think everyone has offered good advice. I just wanted you to know that when I had my motorcycle accident in 2003 I crushed all the bones beneath my knee and split my tibia down the middle. It was a non weight bearing injury and I could not put weight on that leg for 3 months. On top of that I separated my shoulder so I could not use a walker.

Looking back at this since I've had BC has made me realize how depressed I was. It was just so hard depending on other people for everything and I was basically confined to a lift chair with a port a potty next to it. I have 8 screws in my knee and a rod down my leg.

I've often thought of those on the board who have to deal with issues like you AND BC--no wonder you are whining and down in the dumps. You are entitled to have a pity party.

I do agree about the PT. I started that way before I could put weight on that leg and am also wondering why your Dr. has not ordered that for you. Yes, it's hard to physically get there but it seems it would help you a great deal.

Keep the faith--these type of surgeries take time--it took me a year to do steps like a normal person because my knee will never have the range of motion it used to.

I'm so sorry you are having this issue along with everything else.

Sending you a big hug.

[Rich66]

Hard to predict how any person will heal from a break and surgery. I was down for 6 weeks with a broken ankle/surgery. Major swelling. Because of the blood rush/gravity, it hurt like hell to lower my foot from the bed to the floor.
Are you having a lot of swelling? Bags of frozen peas placed around my ankle did wonders for pain and swelling. PT sounds like a good idea...when you are ready. My surgeon thought I should rehab myself but I asked for a professional to help. I was afraid I'd push too much or do something wrong. When I went to PT, the therapist just laughed and said something like surgeons feel it's all over if the X-Ray looks good. So..you might yet again advocate a bit for some help. On the other hand, my 74 y/o dad had a partial hip replacement and hardly noticed it. Damn him ;)

[chrisy]

chelee,
sorry you are having to deal with this pain. Then again, the whole thing is a big pain and you've gotten through it so far. Only you would think to say "I could have been sitting back enjoying myself on the Navelbine". Deep down there has to be a smile there somewhere.

You will get through this...I can tell you are frustrated and angry. You can't really go back, only forward. So channel all that energy into getting back on your feet - one step at a time - and let the navybeans do their job on the cancer.

Hang in there my dear!
Chris

[PinkGirl]

Hey CheleeGirl

That was an excellent whine/vent ... good job. I hope it felt good to get
all of that crap off your chest ... that's what we're here for.

Why don't you take a few days to be pi$$ed off at the world and
then, as wise ChrisyGirl suggested, move forward. You can't undo
the surgery ... there's nothing you can do about the past ... you know
that old saying about arguing with reality ... reality always wins.

You have been through so much and have been so strong and determined.
I know you will find a way to get through this phase too .... I know you can
do it!!!

[ElaineM]

It is okay to vent. I vote for physical therapy. The orthopedic surgeon might be the first doctor to ask. I am surprised the orthopedic surgeon didn't suggest it.
If your doctors don't suggest it ask for it. It might help you get back on your feet faster.
I had all kinds of physical therapy after my hip surgery. I had physical therapy several times a week and my usual weekly chemo at the same time. Water therapy was the best, but I also had various other kinds of physical therapy.
Good luck. Hang in there !!

[harrie]

Chelee, just want you to know your venting was heard by me too. Take care. Hope things start to turn around for you.

[Chelee]

For those of you that brought up the lack of physical therapy...I have no idea why I wasn't given any during my 5 day hospital stay, let alone now that I'm home? I'm very motivated to get off this walker & cane so I have been up moving it as much as physically possible. This house is 3000 sq feet so just going back and forth thru here has been a workout. Plus we have steps in & out of several rooms....so I have to use those all day too. Then I've been to all my chemo appts, scans, labs and you name it using my walker. So I've been giving my leg a workout...it should be better then it is. The worse thing is driving...since it's my right hip it hurts so bad when I have to move my foot to the brake & gas pedal. Damn it hurts.

I have a follow-up appt. with Orthopedic surgeon on 1-12-10. I am going to certainly let him know how disappointed and upset I am about not being able to walk on my own this far out from surgery! I can take a few baby steps by myself but that's it.

Jacqueline you hit the nail on the head. The ortho really did not tell me what to expect. He actually said very little. It was like pulling teeth to get the information I needed from him. He probably didn't want to tell me how long the recovery was because he knows I would of never done the surgery. (At least not at that time.)

Chrisy I started laughing when you repeated back what I said about enjoying myself on the Navelbine. lmao I have to admit...that is pretty funny! This navelbine so far has been so easy compared to the TCH. My 3 month scan is due is January and I know my chemo combo could change...that's why this time was so important to me. I'll call the ortho surgeon tomorrow and see if this recovery time is normal...if it's not I plan on wacking him up side the head with my walker when I see him. :) (Just a thought.) I'm just saying...

Chelee

[Rich66]

http://7.media.tumblr.com/OlJ8ylM1DbonnpbvfA8sbJH6_400.jpg

[Chelee]

Rich, rotflmao...now were talking. :) Toot toot!

Chelee

[Margerie]

honk, honk! I don't want to raise your bp Chelee, but this doesn't sound kosher.

I have had family members get hip and/or knee replacements over the past several years. They were not due to bone mets, but they ALWAYS got PT as soon as possible, usually the day after surgery in the hospital. They really did not give you supervised instructions/exercises? No PT at all? I am curious to know if his non-HMO patients are denied PT. Is this the standard of care????? You should find out because it does not sound right. The first articles I found when I consulted Dr. Google (hip replacement surgery):

http://www.mghp.com/services/procedure/hipreplacement.shtml

http://www.everydayhealth.com/hip-pain/hip-replacement-physical-therapy.aspx

http://www.georgetownuniversityhospital.org/blank.cfm?id=555811

http://www.aapmr.org/condtreat/rehab/hip.htm

http://orthoinfo.aaos.org/topic.cfm?topic=A00377

http://orthoinfo.aaos.org/topic.cfm?topic=A00303

as a side note I tried to google "hip replacement surgery and no physical therapy" and the result was Did you mean: hip replacement surgery and physical therapy (http://www.google.com/search?hl=en&rlz=1T4GPTB_enUS302US303&ei=gzI6S_reAYq8sgPmpbnXAw&sa=X&oi=spell&resnum=0&ct=result&cd=1&ved=0CA8QBSgA&q=hip+replacement+surgery+and+physical+therapy&spell=1)

LOL

[Chelee]

Margerie, Earlier today I read your post to me and what perfect timing. I was just going to call my Orthopedic surgeon's office to request more pain pills. So I decided it was also a good time to ask my ortho's nurse WHY I didn't get any PT this entire time?! When I was in the hospital I asked a number of times why I wasn't getting physical therapy? Never got a straight answer? Other then the fact I was at City of Hope and I had a "case manager" from my cancer center handling things putting thru all the authorizations. I kept asking my Ortho and his nurse if my case manager was "denying/blocking" my physical therapy? The ortho's nurse would just tell me that the doctor writes the orders and they are suppose to follow them. I told her at that time they aren't doing anything for me.

I am so angry about how slow this recovery is going and I can't help but think if I'd had PT I might of been off this walker long ago. So your post did help to get my BP up. LOL I read your links along with a bunch I dug up for every type of femur surgery I could find. So after all the reading I called my Ortho's nurse & let her know how upset I am that I'm not further along in my recovery then what I am. She says well I have to remember that the doctor had me using a walker and wheelchair for two weeks BEFORE my surgery so that made my muscles even weaker then they would have been before the surgery. (She gave me extra ammo with that comment!) So I said ISN'T that more reason I should of had some physical therapy? She tried to get off that topic and I pushed the issue and told her I REALLY need to know why I did not have any PT? I told her I need to know if my "case manager" down here blocked my PT or what? I even asked if I could have a copy of the Ortho's orders? I did not let her off the hook and she is going to call me tomorrow to let me know from her end why I didn't get any PT. I told her if it's my case manager I NEED to know because I'm really upset. None of this is normal...not only did I not get physical therapy, I did not get occupational therapy or respiratory therapy which I was suppose to get. I think my case manager is behind all this. She made a comment to me one time that some of her patients think they are there to DENY/BLOCK medical care to keep down costs. (I'm starting to believe that's exactly what she has been doing!)

So I will have a answer tomorrow...she knows how upset I am. I'm glad I read your post before I called. I'd hate to blame the case manager if I found out it was really my Orthopedic that didn't order all of this. But I would find that hard to believe since he told me in the recovery room I would be UP first thing in the morning walking. HA! Never happened.

Chelee

[StephN]

Chelee -
What puzzles me is that every time I have been discharged after a hospital stay no matter FOR WHAT, I have been given some forms and a nurse AND/OR therapists have come in to go over my discharge instructions.
Meaning everything from wound care to lifting, meds schedule, and more. Often those instructions included an exercise routine.

Did you NOT get anything like that? Or did it just not include any kind of physical therapy?

I think you just need to demand orders from the doctor for physical therapy.

About the HEALING. Are you taking supplements or eating a diet that is higher in healing properties?? You could put this question to our Nutritional Nurse in that part of this web site. Certainly she will have some advice that should help.

[Chelee]

Hi Steph, I did have a discharge nurse come in to see me before I left. She gave me two discharge forms with lots of boxes checked off. Like I can life up to 5 lbs...resume activities as tolerated..exercise as tolerated, blah blah. The "only" written instructions was to put dry dressings to cover the hole that had the JP drain. Keep it covered until it quits draining. A list of my medications & when to take them.

The back of the other form just had things circled as to when I should call City of Hope nursing triage if something doesn't seem right. No mention of physical therapy, exercises...absolutely nothing. The discharge nurse did show me how to give myself Lovenox injections & told me to call her if I had any questions. No mention of PT coming out to my house or on the two forms she had me sign? I was asking for PT from the first morning after surgery. It was my biggest and most constant complaint!

As to food I'll admit I haven't done well in that area. I really haven't had much of an appetite...not sure why? I'm home alone all day and at first it was next to impossible to go cook myself something or even fix a sandwich. Now I can get around better on my own but I just haven't wanted to eat much. I know I need to work on that.

I noticed I did not get a call back from my Orthopedic's nurse today like she promised. She was suppose to let me know exactly what his doctors orders were and see why I did not get PT. She is always good about following thru and calling me back...odd that she didn't this time? Someone is going tell me why I didn't get any PT...or any other type of therapy for that matter. I bet it was about keeping cost down...I'm an expensive patient...so they will cut corners every chance they can at MY expense. Let me suffer. (I think it's beyond cruel.)

Chelee

[ElaineM]

I have my fingers crossed that you have a healthy 2010 and everything will be smooth sailing from now on.

[vlcarr]

One thing that worked for me when I was immobile was a cooler by my chair. My husband would fix a sandwich, salad, fruit, etc and we would put it in the cooler by my chair since I could not get to the kitchen to make something to eat. He would put cereal in a tupperware bowl and put some milk in the cooler. It was a life saver--no hot food but it got me through the day. Just thought I would share since you really need to keep your strength up.

[Lani]

sometimes during the act of performing orthopaedic surgery a bone can be weakened in ways not expected preoperatively (cracks can develop, two week points can be joined in one combined fracture, bones can just break into many pieces--"comminuted". Sometimes without any complications at surgery the bone fracture is found to be much more involved and complicated at surgery, than appeared on preoperative imaging studies(especially if they were MRIs rather than CTs)

This can cause a change in instructions given post-operatively ie, need not to put full weight on limb, need to limit certain motions

Can you ask to get a copy of the operative report to see if it intimates that anything needed to be done that was not expected preoperatively?

It could be that is the reasoning for limiting your walking and physical therapy.

If noone will give you a good explanation as to why your activities are much more limited than what you had been told preoperatively, perhaps getting a copy of the operative report and taking it for a second opinion to Dr. Jeffrey Eckhardt @ UCLA (their orthopaedic tumor specialist) would be in order,

In order for you to go along with the program to get the best report, it is imperative that you UNDERSTAND THE WHYs and WHEREFORES of their instructions/limitations placed for your recovery

Just my two cents

[WolverineFan]

Chelee,

I feel so badly for you and don't even know what to say. Please hang in there, and know that you have a loving, supportive family here for you ALWAYS!!

Take care,

Hayley

[Cal-Gal]

Chelee-

I am so sorry that you are going through all of this---

[Chelee]

Vicky, Some how I missed the last few replies here. But that was a great idea about filling a cooler with food. What a great hubby you have! He sounds like a real keeper! My husband just came home from work those nights and told me about how they had prime rib, & baked potato one night. Ribs another...& all kinds of good food. (That was nice of him to share that with me.) :(

Small update though. Just today I managed to walk very short distances without my walker or cane in the house. I have a long ways to go still...but I think I will be rid of this walker soon. (I hope so anyway!) The pain has subsided some too. It's been 45 days and it seems like it's been 4 months. But I'm finally making some progress. I see the ortho for a follow-up this Tues.

Lani, I just got the surgical report last wk. I requested it along with all my x-rays, bone scans and anything else he had.
The surgical report makes no mention of any complications at all. In fact he told me personally I lost alot of blood...so I assumed it would of been mentioned some where in the report? It was only "noted" at the top in fine print by it's self that blood loss was 851 ml. My operative report said very little which surprised me since my surgery took much longer then he planned. In fact both surgical reports from my mastectomies were more detailed. Makes me wonder how much he left out? Guess I'll never know? However now that I've changed my insurance and have a PPO I am seriously thinking of running out to discuss my femur with Dr. Jeffrey Eckhardt that you recommended. I'd love his opinion & see what he thinks about all this? Since we changed our insurance we no longer need authorization to see someone else. Thanks Lani.

Chelee