Feeling a little crazy

pinkLady27

I have been done with chemo since Jan. 8th of 2004. I was 24yrs. old at the time of dx of invasive ductal carsonoma. Shortly after I finished chemo I had a Pulmonary Embolism. I am now having chest pains and trouble breathing. Not sure if the red juice did any damage to my heart still looking into it. Every time I turn around I feel like things just aren't getting better. Then I get chewed out by my doctor today for not seeking attention for chest pains. I feel like everytime I go in for something the doctor thinks I am a hypochondriac. Sorry about the spelling. I guess I just don't want to go in for nothing but I don't want to over look or miss anything either. Am I alone or do others feel like this? Fighting to see my two boys graduate from high shool and someday get married is all I want to do. I just feel a little crazy right now.


Jackie

Ellison

Hi Jackie,

I too get down and out. It feels like there is this big elephant in the room and I can't get around it....

My breast cancer has matasized to the bones. Now stage 4. I am in the process of having more tests to see if it is in any of my organs. That will determine what chemo treatment I will have.
Honestly, I am scared to do chemo again. I had a very strong treatment the first time. I had six infusions and 33 radiation treatments.

Yes, I too have my down days. I have three grown children and grandchildren. This is very hard on my children, husband, family and friends. I do everything I can to stay positive. My children all live in other states. It is important to me that I stay positive as much as I possibly can for myself, them and my husband. I cry when I need to cry. I pray, I get on this post board and read what others do. I talk with other survivors in my community. Then there are days I just have to hang on to my rear end and know this too shall pass.

Something else I did was change one of my doctors. The doc. I had gave me an anti-depressent drug. I took it for a couple of month or so and did not like the way it made me feel. I weened myself off of it and the next time I saw him told him I did not like it. He not only wrote me out a perscription for perkocet but gave me another one for the same anit-depression drug and said do what you want with it. I felt like he wanted to deep me in a fog and painless so he would not have to deal with me. He was not listening to me and I just can't do business with someone like that.

The new doctor I saw today was totally different. He instead recommended a anti-anxiouty medication. Take only as needed, which is not on a daily basis only if I can't shut my head off when I go to bed. Made some other recommendations which I thought were positive. He immediately knew I was the type of person that will wait a while before I let someone know I am hurting. He also sensed I had strong survivor skills. Before we left he said, I want you to know I am here for you. Let me know if you need anything. He gave me a hug. My husband and I walked out of his office feeling I had made the right decission by changing doctors.

This disease is scary. You are young and have small children. I know what you are thinking...

I sometimes feel like my life is going fast forward. I am going to fight like hell with everything I have. I thank God for everyday I get up. I don't want to do chemo again. I know these drugs have nasty side effects. I think how much more can my body take. I am not ready to to not have treatment. I have to give it another chance. I told my onc. that I would let her know when I am done with having chemo.

You hang in there, it is going to be ok. I am here for you. I will keep you and your children in my prayers tonight.

Lori

Sharon345

I was glad to see your post. I'm feeling like if I complain to my doctor again about a pain my situation will become like "the boy who cried wolf" I had Stage 1, hormone positive, grade 2 so I know I have a very good chance of it never coming back again but in the past year I have had a bone scan for a pain in my back and and xray and sonogram for a pain in my leg. Right now I'm deciding whether a pain in my rib is worth telling the doctor about. It's hurt for about a month but only when I press on it and I can't get comfortable when I lie down to sleep. My doctor is good about running tests when I complain but I can't decide whether I should wait to see if the pain gets worse or not. I never hurt anywhere more than a day or two before I had the cancer!

24242

I am always surprised at how some doctors conduct themselves. They too felt that I was a PROBLEM but the one thing I know for sure is most of us know our bodies that well that after cancer can see the signs we were missing and won't let that happen again. If they don't look they will never find out what is causing the pain or continued unwellness. I battled for years to just get some sort of Quality in my life, they would of had me an invalid instead. YES it takes a huge effort on our part to stay in tune with our bodies, our minds and our souls. BREATHING is something simple that we can all learn to do more effectively to calm us and to heal us. I am sorry for your frustrations, there can be many.
Don't stop caring about yourself and certainly don't stop fighting for that QUALITY in our lives we all diserve.
Be good to yourself.
Tara

pinkLady27

Thanks for everything. It really helps to know that there are others out there. I fight my battle because it is what I have to do. I just feel better knowing that I am not the only one with these feelings. I found it very hard to tell myself that in order to save my life I needed to come as close as I did to killing it first. And now I live with a monkey on my back. Thanks again and God Bless Jackie

AuthorUnknown

I know how you feel - in the 8 yrs since my first diagnosis, I have had more scans, xrays, biopsies, and ultrasounds than I would have ever imagined! 3 yrs ago, I complained about pain in my shoulder: the scan showed a pinched nerve in my neck due to arthritic changes, but also a
"suspicious" area lower down on my spine. A full
spinal scan showed that this additional area was also arthritis, but that there was a "mass" in my abdomen. An abdominal scan, followed by an internal ultrasound of my uterus, came up with a uterine fibroid tumor, BUT a "suspicious shadow" in my kidney. So, of course, there had to be kidney films and tests, which found a benign cyst that I was probably born with. The final outcome:
four months of sleepless nights later, my shoulder still hurt!!! Once having had a diagnosis of cancer, every change/pain gets looked at under the microscope "just in case".
It helps a lot if you can get things scheduled as soon as possible - and get the RESULTS quickly.
My oncologist calls me as soon as he gets the reports, and leaves me a message if I'm not home - he knows that I am MUCH more upset by not knowing than I am by a message that says there's something there - he always leaves a number where I can reach him as soon as I get the message, so I can call for details if I want them.
I hope that your experience is similar to mine, and that you get your answers soon.

inkblot

Hey Jackie:

Just saw your post and wanted to encourage you to
try to put some energy into relaxation. That could be focused relaxation techniques, meditation, Yoga, long soaks w/aromatic candles about and your favorite music playing softly...a trip to your favorite art gallery...whatever gets the job done for your particular personality and/or needs on any given day.

We spend so much time caught up in follow up visits, worry about aches and pains, trying to deal with side effects of our treatments and the big one: worry about recurrence/mets, that we really do need to make relaxation a part of our daily routine. It's well worth the effort as it can soothe our spirits, calm our fears and relax our bodies and minds. Otherwise it's far too easy to find ourselves chained to an out-of-control emotional roller coaster which can usurp our joy, and especially our peace.

My attitude is that I know I had aches and pains pre cancer and I fully expect to have them now.
The only difference now, is that if something lasts more than a couple of weeks or gets worse once it begins, if there's redness, swelling or discoloration or intense pain of any kind then I ring my doc. Otherwise, I do as before and give nature time to heal the pulled mucsle, the bruise, or the aching joint.

It's not easy to NOT think that every little thing spells gloom and doom and/or means our cancer is back, following treatment. I also think it's a perfectly natural response to what we've been through. It's all scary stuff. Still, in order to continue to live with peace about us, we must make our best efforts to find balance in every day.

We are all subject to the aches and pains of our human bodies. We still get bursitis, arthritis, tendonitis, bruises, pulled muscles, headaches, stuffy noses, colds, the flu, urinary tract infections, indigestion, cramps...you name it and we get it, at one time or another. After cancer though, we tend to think everything is cancer again and it's tough to get through that minefield and know when to call our docs and when to wait and see. My reasoning is that if it IS something serious at all, it won't go away and then I'll know it's time to call my doc after a few weeks. Unless, as I mentioned before, there is intense pain that won't let up, breathing problems, swelling, redness, ongoing fever that seems not related to a virus, etc.. Also, any bleeding needs addressing right away. Not something to fool around with. I think each of us develops our own set of criteria for when to call and when not to worry. If our docs criticize us, or label us hypo's, then we may need a new doc.

The main thing is that we not spend each and every day in fear/worry. That alone can stress us and actually cause aches and pains, trouble sleeping and focusing, while leaving us irritable and tense all the time. It robs us of our peace and that's one huge theft we must take steps to prevent.

All docs are different in what tests they may or may not routinely do or order in the event of recurrent symptoms. If we're not happy or comfortable with our docs approach, then we must find a new one with whom we can feel comfortable. We pay our physician's for a service and if they aren't delivering to our satisfaction, then it's time to withdraw our business. Simple as that.

It's just SO important to seek and find balance and ways of relaxing, otherwise our whole lives can seem out of kilter. No one can live well in a constant state of hypervigilance and/or fear.

We can get into a negative loop so easily, following treatment, when we're so vulnerable and typically feeling a bit lost. It's a delicate time because we're typically emotionally and physically exhausted/tapped out. We find ourselves maybe feeling abandoned because we're not seeing doctors constantly anymore and that can leave us feeling alone and frightened. Suddenly, we're back to taking care of ourselves and figuring it all out as we go. What's normal, what's not? Should I feel this tired and why does my left knee hurt all the time? What's up with my darned feet these days? I swear, I've got this pain in my rib this morning that wasn't there yesterday...the list goes on and on. Add to that the fact that most of us are just beginning to deal with the emotional impact of our dx and treatment and we need so badly just to heal on that level, so it isn't any mystery that we can become a mess in a hurry!

No one gives us any "exit info" as we complete that last treatment. No one tells us that we'll more than likely feel alone. No one tells us that we're going to have some overwhelming fears to deal with. No one tells us anything about the importance of our future nutrition, exercise and relaxation. No one tells us that we may benefit from counseling to help us find our way out of the fog which cancer and it's treatment can leave many of us fumbling through. Most of us emerge from treatment with more than a few issues and nothing even resembling a road map. Expecting our medical doctors to really be helpful with the emotional wallop cancer packs is a bit much, I think. Typically, they're happy to write a script for an anti-depressant, sleeping aid or whatever but the truth is that they haven't the time or the wherewithal to help us much on the emotional front. They're typically not even good listeners about our emotional issues. It's just not their job really. What IS their job though is to recognize when we may benefit from counseling, etc. and recommend same to us. Some don't even bother doing that though. Just the way the system works in many cases. That leaves it up to us to reason when we may need some help. We know ourselves best and most of us can also rely on family/loved one's to guide us in that direction, when we seem to be stuck. We have many tools at our disposal and must empower ourselves by trial and error as to what works best for us. Love ourselves enough to reach for, even stretch for, the healing we so deserve.

Those thoughts are all applicable to when we've completed treatment and have no known active disease going on.

I think it's very different when we have mets or recurrence and I'd like to say how much I admire Lori's attitude!!! Dealing with many very heavy issues and her determination shines right through all of it! WOW. That just knocks my socks off! My fingers are crossed in such a way for you, Lori, that bone breakage is a possibility!!!
Remember that many, many women survive very well with bone mets, so my hope is that your docs will find no other organs affected and that you may escape the need for additional chemo. Please keep us updated.

Hoping you're feeling better soon Jackie. Hang in there and trust yourself because you CAN find ways to manage the issues. One issue at a time and one day at a time.

Love, light and laughter,
Ink

mollyrice

Hi, I know about the red stuff ohoooo its something else. I'm an 11 year survior I guess it was pretty good stuff lol. Hope you are doing good .Blessings Peggy