Why was I stronger DURING treatment than I am now?
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Rabbit.....congrats...💃....what a relief!!!!!
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Hey All,
Janet your post made me laugh and laugh about saying how you feel. How wonderful! wish I could do that. It must feel very liberating. I thinK i will have to practice as I too get very impatient with silly people and thier stupid comments .
rabbit, thank-god that post- treatment mammo is done. I know what you mean about feeling anxious about it. It is horrible. I am so pleased for you. I have my 1st 1 on the 20th Feb a year to the day since I was dx.
Scottee - I am very sorry to hear about your friend (it is the news we all dread). I hope you are ok.
The job hunting? I had my interview on Mon (supporting people with cancer!) on the phone. They were very nice and I did tell them bout my dx. They said I will hear in 2 weeks or so.
But, I have a problem in that I am having recon (round about August). Plus, I have been to the hospital today as I am having problems with stress incontinence and it transpires I have a prolapse of this area including bowel (all as a result of childbirth). I have to have to have an op to rectify this. How can I work?? with all this going on? I feel trapped by my health.
I am trying to get myself back on track, following my awful ex (yes Janet you are right! he is an arse).
Which ever way I turn I feel trapped.
What can I do? If I get the job I just don't see how I can take it, I will never be there!
Janet, Is this a proper rant??
WSxx
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Rabbit -
Can you hear a cork popping in Toronto? Here's to your good heatlh!0 -
Thanks, Scottie. I am relieved.
Cheers, Janet and thank you!
WSxx...keep us posted about your mammo. on the 20th. If you are feeling anxiety about it, this is the place to be for support. We will cheer you on. Good luck with the job opportunity. I bet you would be great at supporting people with cancer. What better person than someone who has been there? And just take it one day at a time with all of the health issues. Get one under control and move on to the next. That's the only way to keep your sanity. Oh, and tell that ex husband of yours that there's a bunch of warriors across the pond that have your back and want to kick his arse!
You ladies are the best!
Rabbit0 -
Wintersocks - Yes, that's a pretty good rant. But you have every reason to - nobody should be limited by their circumstances. It's unfair, and requires too much effort and compromise.
But could you just accept the job, regardless of your surgery? What if it's postponed, and you've given up an opportunity? I used to think that honesty was the best policy, and laying everything out on the table was the only option. Now, I'm not so sure. Sometimes you have to put yourself first.
I'm still waiting for my surgery date - meanwhile, I'm trying to line up my next job (I'm a freelancer) and don't know my availabity. I'm ready to move forward, but I'm in limbo until I can make a plan. (I sure hope I get a flat stomach after all of this).
I hope the job works out - it sounds like a position where you would be valuable.
Janet
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Rabbit, Dune, Janet and Scottee too! yes I will let you know about my 1st mammo, post dx. Do you think they know I have only 1 boob? or do you think I should tell them before I go in?? My, these things we have now to mull over! I bet you are so pleased yours is out of the way? I don't feel too anxious as yet. But it is so odd it is a year to the day....
The health stuff is worrying me, but I think you are right rabbit, it is best to get one under control 1st. I guess that will be the gynae op, plus ultrasound of the ovaries. The diep is planned for this year (Aug). perhaps she might not do it as I will be having 2 GA's?
Hey, Rabbit will you really come over and kick the ex's arse? I would love that it would be so much fun, He certainly deserves it. I am waiting for him to get in touch with me now that the house situation is court ordered. Next, is deciding how much it is to go on the market for. Hey, what a bunch of warriors. I think he would be alarmed!! tee hee.
Janet (I so agree with you) about now putting ourselves 1st. The limbo land is not good is it? The waiting and knowing what to do next, and when to do it too. I will just have to have a really hard think about the job, They do not know about the recon. When are you due the diep, to go ahead?
I'm sure we will get a flat tummy, it's a little something nice to come out of this. But it is such a massive op. I feel quite anxious about it.
I will let you all know about the job (should I/shouldn't I?)
- Oh to just be normal again. Dunesleeper, what's happening with your job situation?
Night to all from accross the pond.x
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I went to a GP, picked pretty much at random. She listened to everything I said, then said I just needed to make some (real life) friends, exercise, and take fish oil.
Socializing is mentally exhausting to me and triggers social anxiety; what sort of exercise am I supposed to do when it's freezing outside and I'm in constant pain? and I'm vegan- not gonna take fish oil for anything.
Then she tried to give me a script fo Paxil. I checked the interactions on my phone and pointed out that Paxil doesn't play nicely with tamoxifen, and she said it "would be ok."
I didn't take the script.
She called me an hour or so later. I guess she called my MO, who suggested Effexor instead. She called that in. I tried it. It made my insomnia worse so I stopped taking it.
Every minute of every day I wish I had not gotten treatment, so that maybe I would be dying by now.0 -
Coottontail - I felt like that all over Christmas, got to feeling really wretched and seriously thinking about ending it now (and spiting cancer too but getting there first) - but then i talked to somemone with real experience of this journey and they said feeling like youa re now IS VERY common, I thought I was going mad and all sorts but it seems its all part of realizing we are on a different road now, albeit unwanted, and we need to be able to start walking it - I am not there yet totally but when I get proper support (had to fly 1000 miles to get it) I do feel better but have spent the past two days in serious tears.....nearly all the time and certainly EVERY time I got even close to how I really feel - hope this helps.....
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Cottontail....I can relate to a lot of what you are saying. After going through the summer
from hell I broke down and agreed to take an anti-depressant and an anti-anxiety med.
I also decided to not retire from teaching just now (I'm 65)....between my meds and
keeping busy with work, I find I'm much better now. Socializing still brings on anxiety
and, to be quite honest, like you it is exhausting. I find I see less and less of my old friends and feel more comfortable now with women who have had BC....
I'm lucky, in that I do love shopping, so when I hit the malls I feel "normal" ...just one of the crowd.
I guess what I'm trying to say is that keeping relatively busy is what is working for me.
There are many different meds and you just have to find the one that will work for you.
If you are interested in mine, you can PM me and we can talk.
Hang in there, it will get better.0 -
Cottontail, many of us have been where you are. It is not uncommon to fall apart when we get to the end of the heavy treatment. GPs are good, but you may do better with some counseling right now. It helps to get it out and talk about it. Some of the things I was feeling last summer were so dark I could only discuss it in here and with a therapist. I knew I wasn't going to commit suicide, but every morning I woke up thinking I should just end it. I had no choice but to get out of bed and help my kids get off to school, but once that was done I was agitated and couldn't cope. I used anti-anxiety meds for a bit, but found I was taking more and more and they weren't helping. Anti-depressants just made the insomnia worse. In the end, I just had to ride it out. It took a few months, but the brain is very powerful. I woke up one morning and could tell it all had passed. I was back to myself.
I think the worst part of the depression and these crappy feelings come from not sleeping well and in my case, I was obsessing about my treatment, my pathology reports, how every decision I made allowed something else to be effected, etc. In part, I made myself a bit nuts, but being so analytical I kept playing out all the scenarios until it was overwhelming. In the end, I had to stop the unproductive thinking. I would tell myself that the chemo saved my life instead of ruining it. I would tell myself that the surgeon did everything he could to make sure cancer was gone and wouldn't come back. I tried to remind myself that I still had my breasts and that things could be a lot worse.
I would say that if you could get your sleep in a better place that would be a start. If you wake up at that magic 3:00am hour, perhaps you can recite something to calm your mind. For me it was just a sentence or two. "My treatment healed my body, my mind will now catch up." Saying something to yourself over and over without getting out of bed can set a pattern for your mind to relax. I know it hurts, but it will pass.
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I just don't see the point. There is no meaning or purpose to life. My life, any life. It doesn't matter if I live a short time or a long time, if I'm happy or sad, if I'm good or evil.
I don't even know what it means to "like" anything anymore. But what does it matter, anyway? It doesn't.
The only things that keep me from suicide now are my mother (it would destroy her), and I don't think my husband could properly care for our companion animals on his own. But for that, my life should have ended last year, at 36. Treatment didn't heal my body: I already have breast/trunk lymphedema, and constant pain my my breast, axilla, shoulder, and upper arm. The only time I'm not in pain is when I'm asleep- which is not very often. Treatment destroyed everything I thought was good about my life.
I don't think counseling would help me. I have trouble talking to anyone about anything most of the time. I don't see how anyone could convince me that life is in any way meaningful. My insurance might cover it, but I couldn't get time off work to go.
I've had insomnia for around ten years now. I managed to get a script for trazedone from my MO awhile back, but it actually made my sleep worse than without it. (And she clucked and tutted at me when I asked for help with sleep.) I've tried all the "home remedies," follow a routine, take melatonin, wear a sleep mask, no tv in bed, blackout curtains, noise machine, use a light box in the morning... Nothing works.0 -
Cottontail, I get what you are feeling, one does begin to wonder what is the point. Do I just struggle along and wait for the next cancer shoe to drop? I bet many of us deal with these thoughts. I'm nervous about SSRIs too, but I have taken Ambien on and off since menopause when my sleep got wrecked about 6 yrs ago since cancer diagnosis I have used it maybe 3-4 times week and it gives me a solid 6 to 6.5 hours. No side effects either. Getting some rest really helps the mood. Hugs.
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Cottontail - I understand
We've stared Death in the face, and nothing will ever be the same again.
I am not afraid to die
The price I paid for 'life' was too high - it cost me the very things that brought me joy
Right now I survive on the memory of what was.
I now accept that some candles that burn bright are not meant to last all night.
I looked at the pile of pills I need to take just to get through 24hrs. Half of them treat the side effects of tamoxifen -and said 'no more'
That's my choice & I'm at peace.
I've re-adopted my chemo approach...live one day at a time
You are not alone0 -
I liked this one today:
February 8, 2013
Letting the Curves Take You
ControlThe answer to control is practicing surrender.
Trying to maintain control in this life is a bit like trying to maintain control on a roller coaster. The ride has its own logic and is going to go its own way, regardless of how tightly you grip the bar. There is a thrill and a power in simply surrendering to the ride and fully feeling the ups and downs of it, letting the curves take you rather than fighting them. When you fight the ride, resisting what’s happening at every turn, your whole being becomes tense and anxiety is your close companion. When you go with the ride, accepting what you cannot control, freedom and joy will inevitably arise.
As with so many seemingly simple things in life, it is not always easy to let go, even of the things we know we can’t control. Most of us feel a great discomfort with the givens of this life, one of which is the fact that much of the time we have no control over what happens. Sometimes this awareness comes only when we have a stark encounter with this fact, and all our attempts to be in control are revealed to be unnecessary burdens. We can also cultivate this awareness in ourselves gently, by simply making surrender a daily practice. At the end of our meditation, we might bow, saying, “I surrender to this life.” This simple mantra can be repeated as necessary throughout the day, when we find ourselves metaphorically gripping the safety bar.
We can give in to our fear and anxiety, or we can surrender to this great mystery with courage. When we see people on a roller coaster, we see that there are those with their faces tight with fear and then there are those that smile broadly, with their hands in the air, carried through the ride on a wave of freedom and joy. This powerful image reminds us that often the only control we have is choosing how we are going to respond to the ride.0 -
Cottontail - I know how you feel... I am divorced 4 yrs now from a very abusive alcoholic. I live alone in a house with my dog and 2 cats. I'm an only child and my parents died suddenly 5 yrs ago. I have 1 elderly aunt. I think like that sometimes... the only thing that gets me out of it is how much I love my animals... they depend on me for everything. We must plug on with the hope that they are working on more discoveries. I have several friends all recovered from BC and they give me encouragement... because sometimes.. I feel like you do. We need more animal lovers here on earth... please stay.
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Cottontail, we are here for you. Just keep talking to us. We all get it. We've been though it and the emotional pain can be far worse then any physical pain. Please know that it will subside. Your mind and body will fall back in sync and you'll be stronger. My father gave me a plaque with the Serenity Prayer before he died. It can be helpful.
God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.
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Cottontail -
You're not alone with your feelings. I think we're programmed to believe that the end of the treatment is the end of 'dealing with cancer', when in fact it isn't the end at all. There are so many more steps and obstacles and most of them are invisible.
I was a mess after my treatment ended. I wasn't suicidal, so I can't pretend to know how that feels, but inwardly, I was unrecognizable to myself. This new me lived in my old body and I was uncomforatable & agitated everywehre I went. Often I was a total bit*h and was surprised or ashamed of the way that I acted. Sometimes I was even secretly delighted, because as I slowly fell apart, I started to discover some pretty true feelings. My social life shifted and I filtered out some people that took a lot of work, but didn't offer me any rewards.
Counseling might surprise you. And it's actually good for people like you (and me) who aren't good at articulating their feelings. These therapists often have the tools that help you dig a little deeper, and talk. Or not talk. I saw two therapists during my post treatment breakdown. One just made me angry, but the other one gave me a little bit of clarity, and at the point, the smallest bit of clarity made the difference between making it from one day to the next. I declined medication, but was really helped out by a book on anxiety that the therapist recommended.
My animals helped a lot too. I have a dog (basset hound) and two cats that are loud, expensive, and dirty. But I can't imagine life without them. Jed, (the dog) gave me a reason to get up every morning, and knew when I needed affection. Cat's drive me crazy, but the pets came as a package, so it was all or nothing.
Try to take some small steps. Maybe you could start by getting a new GP. Though I hate to say it, I agree about the exercise. Maybe not what you're used to , but there are some restorative yoga classes out there that are pretty effective. Some are so basic that it's just a bunch of deep breathing in a dark room - but still, theraputic. I've got lymphadema (mild) and I can't do as much as I used to but I always leave a class feeling better than I went in.
And try to accept the fact that what your feeling is temporary. It's another giant invisible monster hurdle we have to get through, and it's not uncommon. Keep writing how you're feeling on this thread, and we'll keep writing back.
Get a new GP. Find someone who you trust so you can have someone on your side. God - you must be exhausted after cancer, and ten years of insomnia. You need support, cus even though this is temporary, it's friggn' hard!
Keep us posted,
Janet
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Cottontail - I get you and its a real **** time......I am still in it to a great extent, if I stop and BE with myself I totally fall apart and feel I cannot go on, hating my physical self, hating the road i am on, not trusting the medics here, not feeling safe, feeling so incredibly profoundly alone. Even writing this my body is churning and feeling sick.........
I too have trunk lymphedema, I get woken up at night and at first felt really pissed off but now I just think, oh awake again, get comfortable and relax and I get back to sleep a lot easier.......and faster, but lack of sleep changes how you think anyway and all I can tell you is the days I do Zumba are the days I sleep better and deeper and it helps with the oedema too.......but some days I have to really force myself to go.......but the one promise I made to myself was I would not let cancer stop my Zumba and it has not, but it is the only thing that is almost the same (some days I see myself in the mirror and its all I can do not to howl or hide). Don´t make yourself do anything different - is there something physical you enjoyed in the past (even if you dont think you will enjoy it now) that you can do perhaps once a week?
When I am feeling really bad it does not matter what anyone says to me I still feel so damned alone and sometimes more so if the other person does not say something that reaches me (which is rare) - I finally saw a professional who told me I have full blown post traumatic stress and am in a constantly traumatised state (to tell anyone how I really feel makes me cry immediately and uncontrollably) and stuck so i need help to move on........it sounds like you may be there too?
I wish I could give you a hug and lean up against you back to back so you can feel some support from somone who knows what its like.....but I hope you get something from my very inadequately worded post..............
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Janet --- Please share the title of the book on anxiety, the one that helped you. I sure could use the help, since I have gotten off of the SSRI and am now being taken off the xanax. (I just treated myself to 1 and had a delightful nap, though. Ooh la la.)
Cottontail --- I hear you that you don't think counseling could help, but maybe it could. I'm just finding out about resources available to me. Actually, the breast center had given me this information a year ago, but it got buried among all the other pamphlets and papers and forgotten about. Anyway, if you wanted to give it a try, you could contact the breast center that worked with you and explain what is going on. They should be able to hook you up with someone who is experienced working with breast cancer survivors -- and that is what we are now, whether we feel that way or not.
Lily --- I suspected PTSD for myself, and your description of falling apart when someone asks how I am fits in with that for sure. I had to go to a doctors last night because it turns out I have caught a case of hyperacusis. Anyway, when she asked I was, I broke down crying about how Thursday was my one year anniversary of finding the lump and then about a number of things that happened since. My whole body was shaking, and I just kept apologizing. I will get through this, though, and that is what I told her.
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Dunesleeper,
Hi there. Glad to hear you had a lovely nap! (I spent the afternoon shovelling - epsom bath & nap to follow)
The book is called - The Mindfulness & Acceptance Workbook for Anxiety.
A Guide to Breaking Free from Anxiety, Phobias & Worry Using Acceptance and Commitment TherapyJohn P. Forsyth, PH.D.
Georg H. Eiferrt, PH. D.
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Cool. Thanks Janet!
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Hi ladies,
I just found this thread and cannot tell you how relieved I am to see all your posts....but also profoundly sad for what so many of you are experiencing.....I wish there was a way to take away the hurts, loneliness, anger, frustration, depression and suicidal thoughts. I have always been told how strong and courageous I am but at times I feel like a fraud and anything but strong!
I just finished my chemo on Jan. 17 and start my rads next week. I went through a very hard time about a week out from my chemo...I was so angry, emotional and wanted to stop the fear and pain. At one point through my treatment I counted my pills and wondered how many it would take to end it. But then I thought of my beautiful 14 year old son who lives with me part-time, my friends, family and boyfriend....and thought how hurt they would be since they have surrounded me with love.
Like many of you when I look in the mirror, I don't see myself and hate the flat side of my body....I know my life will never be the same or that I will never feel the same again. I am tired of being hairless, people looking at me or avoiding me...but there have been two people who have really kept me going...my boyfriend and best friend. They just keep on loving me despite my craziness and anger...and lots of tears...I cannot stop crying at times...but journaling really helps me...it is good to get my feelings and thoughts onto paper where I can get these feelings outside of myself and look back at my journaling at a later date. Some days are worse then others but living one day at a time is so true. I get overwhelmed with the thought of going back to work or even doing radiation...so I just focus on today...I am by myself a lot and that is not very good...so I do try and get out..when I read all your posts I know that I am not alone as I so often feel.
Thank you all for sharing!!
Energy0 -
Welcome Energy, I too was extremely grateful to find this thread. It is very isolating and frightening to feel the depth of sadness and anger that can come with breast cancer diagnosis and treatment. I felt like there was something profoundly wrong with me and that I was the only woman not feeling utter happiness at being alive and getting through the treatment. Friends and family may love me but don't come close to understanding the way these marvelous women do. Thank YOU for sharing too. Welcome. I think I'll take your cue and start writing a bit when I get those overwhelming moments.
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Thank you Purl51, it is so true that no one will understand your fear, anger etc like all the women on here. I think I need to find more women locally who are going through this...up until lately I have not attended any support groups or do not know many others that have experienced this....now that chemo is done...a lot of my friends think it is all over and that radiation is a walk in the park...I don't feel like talking about my true feelings with them because they just would not get it.
Thanks again....
Energy0 -
Hello everyone,
Sadly, I too recognise most of the feelings expressed on this thread - that is why it is so wonderful. Dunesleeper, really love the piece you posted. This was my approach largely. From the second I was dx I thanked God it was me and not my children.
I put myself in the care of my consultant and let go of control. It was the only way I could do it, otherwise I knew I had the capacity to go completely unstable. I had one serious 'episode' when I refused to let the onc examine me, I was literally frozen with fear.
Cottontail, stay with us, keep telling it how it is for you. All of us understand. Your life is not over, don't you believe that. Try to find and see a therapist a good one can make such a difference (I know!).
Lily, I too feel I have PTSD- and I feel 'stuck' about how to 'be 'in the world now. I too cannot see me when I look in the mirror.
I cannot think of a 'new normal' to 'celebrate', just an acceptance of what has happend.
I wish we could all meet.
x
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Hi everyone....I have been reading everybody's posts and have felt, still do, all you are feeling and going through. I have a close friend (ex nurse) who constantly tells me that she regrets the day I found BC.Org!!!!!. She is always telling me that most women who have had BC are getting on with their lives and not living in fear daily. She believes
coming here just exacerbates my fear and anxiety. Foolishly, I listened to her !!!!!!
It was short lived however. Where else would I find wonderful supportive women who
just get everything I go through, who will listen and give advice when needed, and if I get excited about getting my butt off the couch and actually accomplishing some small task...
Where else could I go where people validate my feelings and concerns..........right here!!!! I thank God everyday that I did find this website....and in so doing .....have met
some amazing women, kind, caring and supportive. Some of my friends I have known for more than 25 yrs have not shown me this kind of consideration, so when I'm told
that this website is not helping me, I answer now....."walk a mile in my shoes" and we'll
talk!!!
Sorry for going on ladies. Just had to vent after reading all your posts. We will all get through this by helping each other here...be it just listening, giving advice, giving support
or, dare I say having a few laughs.....lol....❤❤❤0 -
It is, unfortunately, true Energy. Most people don't understand that we are only just beginning to deal with our feelings once the treatment ends. When we stop seeing the cancer docs, nurses, and technicians on a regular basis, many people feel afraid and wonder what comes next. It is when I fell apart, and believe me, I fell apart radically. I even got reported to the mods for being suicidal. Note to self: Do not share that tidbit again. That's not to discourage you from getting whatever help you may find yourself needing. You don't get in trouble for your feelings, so get whatever help you can and talk about those feelings. Anyway, I even had to take early retirement because of people not understanding. I went back to work after the mastectomy and my first week back my boss tells me I have to watch my sick time. I could have stayed out a lot longer, but I went back so a co-worker could take a vacation. Dumb me! So, when my boss said that I got to worrying about my job, since I had no idea what other days off I might need because of all this, so I retired. I knew for sure I was not OK. I had been OK through the surgery and all, but when it was supposed to be over, I found that the psychological part was only just beginning. I went from approx $4K a month to $700 a month. So then I had that stress. Then I went off my SSRI (my choice). Now the nurse practitioner shrink is taking away my xanax. (It has been a very helpful crutch since 1981, but she UNILATERALLY decided I shouldn't take it anymore.) So I'm pretty much a basket case. However, I will get through this.
YOu know what. I'm sorry. I just went off about myself. Just because I found a jerk/bitch of a mental health person does not mean you will. I could have fired her but when I saw how upset she made me about taking away my xanax I decided to go ahead and get off it so I would never need their stupid prescriptions again. So, if I wanted I could go elsewhere and find someone who would not take me off the xanax at this time. You CAN find a good counselor or shrink. I actually just found a place called Hopewell, where they offer all sorts of free meditation classes, yoga classes, craft classes, qi gong, tai chi, all sorts of stuff for cancer patients, survivors, and their families. Talk with your breast center. Mine recommended this place for me. Hopefully there is a similar place in your area.
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I have been to therapists a few times in my life for various issues, and it really is worth "shopping around" to find one that clicks. Some were just awful, and seemed to have chosen that profession more for working out their own issues and imposing their own values than on helping others. But the couple that I've found who are good are truly gems.
The cancer clinic I go to (Duke) has a counselor on staff just for breast cancer patients and their families. He has been great because he focuses specifically on the issues that we face. I don't know if there is anyone in your area with this kind of specialty, but it is worth investigating. I found him great just as a reality check that what I was feeling/experiencing was normal (profound fatigue 8 months after treatment, chemo brain), but he also had concrete suggestions of resources that I didn't know about.
I'd also check out the book "Feeling Good" and/or "The Feeling Good Handbook" by David Burns. They are both about using the cognitive therapy approach for depression and anxiety. In The Feeling Good Handbook, he says that using many people have had just as good results self-treating with the book's methods as others have had in going to counselors. So if you don't want to see a counselor, this is an alternative worth checking out.
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Looks like I've found the right thread, if you ladies will be alright with me posting on here, that is. I've been reading this thread, and identify with so many issues you are facing. At this point, I'm really not sure what there is to look forward to anymore. I'm not suicidal at all, would definitely not go there, but where's the happiness? It's not here, and I can't find it. Seems as though if it's not one thing it's another, either with heath, family life, you name it. Yesterday, I blew a gasket so to speak. Just so fed up of being tired all the time and my stepkids being very, very lazy and messy. I went out with a girlfriend, had a nice time, but came home to the same ol' stuff. I swear my family were born in a barn, and yes they actually expect me to do everythign for them. I've asked my DH countless times to have a datenight with me, he always says yes and it never happens. Big deal. He says he accepts my bilateral mx, but has to date even touch the scars, let alone see them. I don't know. Just don't know. House is a disaster, as usual. Step kids were born in a barn too, even though they get allowance for cleaning certain things. I've been in my room since yesterday, I'm so mad, hurt, and fed up. I still have to call and continue to advocate for myself, which is getting very old considering it's been like that since day one. Need to know my xray results on my L hip as there is a lump, and US couldn't pick up anything. Called my ob/gyn as I've signed papers for hystroscopy over 2 weeks ago, and still no appt. Shaking head. Oh but, I'm supposed to wait on my family hand and foot. Does it get better? I sure hope so. It really sucks when you can't think of a single thing in your life to look forward to.
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Hi all,
I have been lurking on this site and believe it is time to get in as long as no one minds. I am 56 years old, a nurse for >30 years and a nursing assistant for 6 before that. Needless to say I am familiar with the healthcare system. I am ashamed to be a part of it right now on many levels.
I am gonna be long winded but feel that writing things down is like journaling for me, it somehow gets it off my chest and takes some of the power out of the feelings. I come from a family of functional addicts/alcoholics (therapists hate the word functional). My first love was food leading to gastric bypass in 2006, then intermittent use of drugs most recently until 2010 the use of prescription pain killers (of course I took much more than prescribed). When I went to treatment in 2010 I wound up on a recovery nurse program because of my nursing license. The focus of the recovering nurse program is to first protect the public but to also give the nurse with a disease (yes addiction is a disease) a chance to get clean and continue in their career. While I am very grateful for the intervention that led me to treatment, the fact that I am closely monitored until March of 2016 makes taking anything stronger than tylenol involve paperwork signed by a doctor and submitted to my program. I have to check in 5 days a week to see if I need to go and give a urine drug screen to be sure I am following the program and much, much, much more but the program is only the background to help explain why I am so pissed off.
I found my cancer 11/12/12, partial mastectomy and SLNB 12/6/12, developed cording and seroma, had aspiration of seroma only once thank goodness and cording finally getting better. Had port placed 12/28/12 no big deal. Two days later wound up in hospital for 4 days with cellulitis/infection of the skin all surrounding the port on IV antibiotics. Through all of this I did have prescriptions for lortab, (my program allows for pain meds with appropriate paperwork by doctor for justifiable reasons, I just can't work while using pain med). The surgeon is the doctor who prescribed the pain meds initially. When I went for my first chemo tx. I asked my MO for pain meds. Her reply was that she wasn't "comfortable" prescribing for me just use tylenol and ibuprofen, (I also have a lower back that will eventually need surgery). Well two days after chemo I woke up in horrible pain, maybe from the Neulasta, couldn't get relief and called the MO on call and got pain meds. Three weeks later chemo #2 and I asked the nurse to ask the MO for pain meds as I didn't want to go through that again, she said no. I got hysterical in a quite way (no privacy in chemo room), and asked her if she was treating me differently because I was an addict. She said no but called my psychiatrist who referred me to pain management. Pain management was an asshole and basically told me to suck it up I wasn't getting any pain meds. Well after chemo #2 I got pain from hell and totally wanted to go to sleep and not wake up. This lasted for 4 days. I still don't know how I got through it. Chemo #2 was on 1/31 and I called pain management 3 times no response, I called the psych doc twice and no response. You get the picture, she is just an addict looking for drugs, at least that is my perception. Well chemo #3 is coming up on 2/21 and I am scared that it will be miserable SEs again and no one seems to care. Because of my close monitoring I don't have any recourse except to do what the doctors (of their choice) say for me to do. I want to tell them all to go FO. I believe that I am receiving sub-optimal medical care but because of the opinion of the nation in general towards addicts and doctor who over prescribe my hands are tied. The only good thing is I only have a total of 4 treatments of Chemo then 6 weeks of radiation but it won't all be over until the end of May and that seems like a long time when I live in fear of unbearable pain. I try to talk myself out of anticipating and awfulizing (my favorite word) what hasn't happened yet. Fortunately I have a great therapist and strong support group of fellow nurses in recovery, plus a wonderful family that is there for me. Unfortunately they can't help with the doctors.
Sorry for such a long involved story but felt I needed to get it out there. It sucks to have cancer but it really sucks when I have to tolerate all of it with no medications except tylenol and ibuprofen. It really makes me mad and makes me feel so helpless. Thanks for letting me get this off my chest. I guess what doesn't kill me will make me stronger.
Hugs, Sheryl
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