Why do people think it's done and over with once we achieve remission?
I have not worked outside the home in over 24 yrs. I was a full time wife and mother. We home-schooled out kids. With my husband's job, it would have been difficult for me to have worked outside the home.I have a B.S. in Social Work, and a M.A. in Early Childhood Education. I plan to complete my teaching certification this spring. I finished my Master's a month before his death. I hope to be able to get a teaching job this fall.
I'm just so tired of people saying," oh, what will you do now that you're in remission?" I feel like screaming at them, "leave me alone, let my body heal, let me rest, let me grieve!" (I lost my Mom in Feb. '08 to Non-Hodgkins lymphoma). I will be on Avaistan every 3 weeks for maintenance for a yr. I should complete that in late Nov. or early December of this year. I'm just mentally drained. When I moved in with my sister I had to sell all our furniture, etc. I have a small storage building with my kitchen stuff, books, etc. I miss my stuff. I mean I can't even boil water in my own pan! (not room for my stuff here). My anti-depressant has helped me greatly. I function fine socially now. Most days I feel okay, other than being tired.
I had to go through treatments alone, etc. I'm just mentally exhausted. I think my mind is as tired as my body!
Guess I just needed to vent to those who get it! Thanks Ladies!
Carla p.s. this is never over. I know long term survivors who still have the fear of its return.
Comments
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Breathe
Carla,
I had a few anxiety attacks a few months out from chemo, not something I'd ever experienced before. I asked my psychologist about it and she said that what I had been through was like I'd been swimming in the ocean. A big wave came and picked me up and I did what I had to do to keep my head above water. After I came down the other side and looked back, I realized it was a tidal wave. That's what was causing the anxiety.
You've been through a whole lifetime's worth of stress and trauma in only a few short years. It will take time, but you can recover from it all. There's no hopelessness here, you are in remission, and that's the big prize. It doesn't matter if those around you don't understand where you are emotionally, you do. So, nurture yourself in any way that helps you feel something good. It may be hard at first, but if you keep trying, you will start to feel good more and more frequently.
I'm sorry if this doesn't sound compassionate enough, but I know that I was able to alter my perspective on things after my treatment by taking it one step at a time and focusing on the positive.0 -
I think it's a common
I think it's a common misconception. Instead of "remission", my kids all heard, "Mom's cured!" I have to keep reminding them that my chances of dying from this disease are extremely high. Recurrence is almost a given, at some point.
Just last week a woman in my local group died, and she was diagnosed 10 years ago. She was stage 2 and had a long first remission, then almost continual treatment for the last couple of years.
I have always been a realist. I don't kid myself and I don't want anyone else to blow smoke up my skirts. It's hard to explain that to people without them assuming that I am "depressed." I'm not depressed; I just know the score. But I'm not going to die this month (not of OC, anyway), so I'll just live every day on its own terms. I figure that every day I wake up on this side of the ground is a good day.
Carlene0 -
UnsureHissy_Fitz said:I think it's a common
I think it's a common misconception. Instead of "remission", my kids all heard, "Mom's cured!" I have to keep reminding them that my chances of dying from this disease are extremely high. Recurrence is almost a given, at some point.
Just last week a woman in my local group died, and she was diagnosed 10 years ago. She was stage 2 and had a long first remission, then almost continual treatment for the last couple of years.
I have always been a realist. I don't kid myself and I don't want anyone else to blow smoke up my skirts. It's hard to explain that to people without them assuming that I am "depressed." I'm not depressed; I just know the score. But I'm not going to die this month (not of OC, anyway), so I'll just live every day on its own terms. I figure that every day I wake up on this side of the ground is a good day.
Carlene
I want to believe that it is all over and I will be the one to be ok but realiy is always lurking. I think we all feel that way. I just dont know if I should put on a Happy Face and go along with everyone or take on the depressing job of stating the reality. I dont worry about it with friends but I feel I have to prepare family members. On the other hand I want to leave Happy memories....never sure which route to take.0 -
trauma
I really believe (and I think I read it somewhere) that cancer patients in remission suffer from a type of PTSD. I haven't had nearly the cascade of terrible events that you have had, but I still have times when I can barely pull myself out of a depressed funk. In my case, it could also be the Femara causing the blues, but I like the tidal wave analogy. That's what it feels like. I think that loved ones really WANT it to be over, and it's hard to rain on their parade, but like Carlene, I feel that I must temper hope with realism. I'm hoping for at least a few years of remission. It's been about a year and a half so far....
The worst times for me are right before a check-up. I've gone 3 months this time, and it's been nice to put it on the back burner for so long. Maybe I should aim for 6 months between check-ups.
Good luck. I hope posting on this board helps you somehow.0 -
Patty....I have been NED forpattysoo said:trauma
I really believe (and I think I read it somewhere) that cancer patients in remission suffer from a type of PTSD. I haven't had nearly the cascade of terrible events that you have had, but I still have times when I can barely pull myself out of a depressed funk. In my case, it could also be the Femara causing the blues, but I like the tidal wave analogy. That's what it feels like. I think that loved ones really WANT it to be over, and it's hard to rain on their parade, but like Carlene, I feel that I must temper hope with realism. I'm hoping for at least a few years of remission. It's been about a year and a half so far....
The worst times for me are right before a check-up. I've gone 3 months this time, and it's been nice to put it on the back burner for so long. Maybe I should aim for 6 months between check-ups.
Good luck. I hope posting on this board helps you somehow.
Patty....I have been NED for 2 years. That's a good sign, I know, but the longer my remission, the more my family wants to believe I'm "cured", in spite of all the stats they've read. Hope dies last, and that's not necessarily a bad thing. But the reality is that the percentage of women diagnosed with late-stage OC who never recur is TINY. This is from www.gyncancer.com:
The possibility of cure is unknown, but is probably only a percentage point at most. The odds of cure if the second line treatment does not work are too low to calculate.
Because I am in the vaccine trial in NYC, I get CT scans every 3 months and CA125 every month. My local guy would be doing only two CT scans a year and blood work every 3 months. His attitude is he's done all he can do, the chemo has done all it's going to do, and now, whatever will be, will be.
The check-ups make my anxiety level go thru the roof. This last week, Dr Sabbatini's PA walked in the exam room and said, "I have bad news." Then she went on to say that the radiologist hadn't sent his report up yet. During that pause, however, my heart went to my knees. I thought for sure she meant that my scan had shown a recurrence. They promised to call my cell, as soon as the report came in, which was supposed to be later that day. At 6 PM, when I had not heard from them, I went back to MSKCC and insisted that someone call Dr S or his PA and find out what the deal was. After a couple of calls, the receptionist said, "Please have a seat and Dr Sabbatini will be out to talk to you in a few minutes." I thought, this can't be good, but when he came out, he said, "Your scan was perfect. I'm having them print out a copy for you." Big, big relief, but the stress and anxiety were awful. I have often said that monitoring the cancer is what's going to kill me; it's going to give me a heart attack, or a stroke.
Carlene0 -
I have expressed the same thoughts herepattysoo said:trauma
I really believe (and I think I read it somewhere) that cancer patients in remission suffer from a type of PTSD. I haven't had nearly the cascade of terrible events that you have had, but I still have times when I can barely pull myself out of a depressed funk. In my case, it could also be the Femara causing the blues, but I like the tidal wave analogy. That's what it feels like. I think that loved ones really WANT it to be over, and it's hard to rain on their parade, but like Carlene, I feel that I must temper hope with realism. I'm hoping for at least a few years of remission. It's been about a year and a half so far....
The worst times for me are right before a check-up. I've gone 3 months this time, and it's been nice to put it on the back burner for so long. Maybe I should aim for 6 months between check-ups.
Good luck. I hope posting on this board helps you somehow.
several times. I know my family and friends prefer to think I am cured and most of the time I am ok with that. At first I kept explaining how it can come back and the odds are that it will. But I don't want to keep beating everyone over the head with that information. We teal ladies are in such a weird position because I know we all want to believe it won't recur but at the same time have to be realistic about it. I am trying to live my life as normally as possible because what if it never comes back and I waste the rest of my life fearing the worst? Of course that is easier said than done.
I lost the man in my life in 2007. We have a son and had been together for 27 years. He died suddenly of a heart attack; no chance to say goodbye. The year before that we had separated because he cheated on me. I asked him to leave because it is what I always said I would do in that situation. But it was not that easy and after a few months I took him back. Then the hell really began because he continued to see the other woman though he kept promising me he wouldn't. My family, including my son, was mad at me because I wouldn't let him go. I lost all sense of pride and was at my wit's end. I don't know how it all would have turned out but then he died.
After going through all that, I came to a point when I felt good again. I was happy and looking forward to the rest of my life. Then in March 2010 I was diagnosed with
stage IIIc ov/ca. Really?
I guess I should be embarrassed to air my dirty laundry and I am not sure why I feel compelled to except to say that even after all that has happened, I am happy and grateful to be alive. I don't consider myself a Pollyanna but I don't want to be unhappy either. For now I have my health and that is really precious. I try to put everything else in perspective.
Karen0 -
Same herekikz said:I have expressed the same thoughts here
several times. I know my family and friends prefer to think I am cured and most of the time I am ok with that. At first I kept explaining how it can come back and the odds are that it will. But I don't want to keep beating everyone over the head with that information. We teal ladies are in such a weird position because I know we all want to believe it won't recur but at the same time have to be realistic about it. I am trying to live my life as normally as possible because what if it never comes back and I waste the rest of my life fearing the worst? Of course that is easier said than done.
I lost the man in my life in 2007. We have a son and had been together for 27 years. He died suddenly of a heart attack; no chance to say goodbye. The year before that we had separated because he cheated on me. I asked him to leave because it is what I always said I would do in that situation. But it was not that easy and after a few months I took him back. Then the hell really began because he continued to see the other woman though he kept promising me he wouldn't. My family, including my son, was mad at me because I wouldn't let him go. I lost all sense of pride and was at my wit's end. I don't know how it all would have turned out but then he died.
After going through all that, I came to a point when I felt good again. I was happy and looking forward to the rest of my life. Then in March 2010 I was diagnosed with
stage IIIc ov/ca. Really?
I guess I should be embarrassed to air my dirty laundry and I am not sure why I feel compelled to except to say that even after all that has happened, I am happy and grateful to be alive. I don't consider myself a Pollyanna but I don't want to be unhappy either. For now I have my health and that is really precious. I try to put everything else in perspective.
Karen
(((((Carla))))) I don't know how you go through it alone. My husband has been a life saver. I know it's uncomfortable to live with family, but at least you do have them. It will be great if you get that teaching job!
Wow, Carlene, you would think that health care providers in this field would know what "bad news" means to us!
Karen - No reason to be embarrassed. You also have a tough situation, with no partner to help out.
I am in the same boat regarding anxiety, family, and remission. Because I was stage 1C, my kids think I'm cured. My doctor even said to me when I woke up from surgery "We can cure this." It took a long time for me to accept that he was being optimistic and not be angry about it. I think it was good for me and my family to have so much optimism at the beginning, but now, I really want my daughters to understand that, barring an accident, this is what will most likely kill me, and that it could be sooner rather than later. I desperately want them to understand, because they are young adults, and still have "stuff" to get over with me. I do not want them to regret any of their behavior after I am gone.
I also get crazy around check ups. I had my last 3 month in Sept, and that coincided with some digestive trouble that was slow to resolve. I got so anxious that, even though the exam was good, and the CA125 was excellent, I started binge eating like I haven't done in 10 years. I gained 15 pounds in two months and feel horrible about it! (Hoping to ski in two weeks, but ski pants don't fit - yet!) Next, I developed some very weird and intense itching that benadryl did not seem to help, so, of course, I thought that might be a liver problem. It was likely from the ALA I was taking for neuropathy, since I stopped it and the itching is finally gone, but I called the Onc and I'm sure they did a liver panel with my bloods last week.
Now I'm waiting for blood and CT results and trying not to freak out. I usually have my CT on a Friday, and get a call the same day, but this time it was scheduled for a Thurs. On Wed afternoon, radiology called me to say it was not pre-approved yet! I didn't even know it had to be. So, I switched it to Mon, then realized I had already started taking prednisone in preparation, and managed to get the approval and get it switched back to Thurs. NO call yet, but I suspect the NP who calls me knew it was switched to Mon but never found out it actually took place on Thurs after all. I'm sitting here wondering if my life is going to change again now. My husband is at work tonight, but thank goodness there's lots of good stuff on TV tonight 0 -
I get the same as all ladies
I get the same as all ladies here. I am/was so frustrated with the cheer of your in remission! Right now NED means recovery and while I look "healthy"...unless you look at my hair growing in at all weird angles...I am plum tired out.
I am slowly recovering. Sex hurts...man, I thought the bathroom issues would be gone by now ....but keep that a bathroom open for me....abdomen still hurts where the tumor was...blood counts are close to normal but still can't fight infections...shingles seem to be coming on...Just from the chemo, I keep wondering what else is lurking around the corner
I think family and friends are rejoicing in the NED and I should be too. Though for me it feels like the war has just begun. This feels like a break in the attacks. I am hunkering down in the bunker. I am living like there is no OVC possibly looming over the horizon, but keeping it realistic.
Keeping it realistic seems to make my family think I am depressed, too. But....look at those odds, and at the women falling around us. I want each minute of my life to count. Hiding from reality does not do me any good.
Despite all the information out there....despite what I have told my family.. IF or WHEN I reoccur it is going to take them by surprise.
I also got the "You are cancer free!" after surgery..only to be followed by "um, we got your lab results back..." later.0 -
Hi Ladies
I haven't posted for ages but have been lurking. I guess this thread has really hit a nerve. In fact only the other night I had my aunt over for a family dinner and she said to me 'isn't it great that you're now cured'. I just looked at her and thought WHAT!!! I decided to give her the low down on the fact that I am in remission (as far as i'm aware) and that the chances of recurrence are pretty high - she looked as if she were going to burst out crying - but I think it's important that friends and family understand the situation. I mean I HOPE that I have no further cancer - I am 12 years out of breast cancer and just 1 year out of treatment for stage 11c ovca. I look very healthy and when people see me they say 'wow you look great' but I ache from head to toe most days and get out of bed in the mornings like of woman of 90 - although no one apart from my nearest and dearest even suspect this.
I don't live from minute to minute or day to day thinking about recurrence but it does rear its ugly head more than I would care to admit. My 19 year old son asks me from time to time if I will recurr - what can I say?! I try to be honest without scaring him but it does break my heart. My daugher seems far more pragmatic but she is like me and tries to put a good face on things. She is my best friend.
I agree that I think we all must suffer from a degree of PTSD following diagnosis and treatment but we all just do what we can to get on with our lives and this is a great place to air our fears and hopes and tragedies.
I lost my beautiful mother to this disease 11 years ago this June and I still miss her terribly some times much more than others - although recenlty a lot. I just don't want my children and husband to have to go through the grief that I am going through about my mother....
Well there it is, as I say it's been a long time since my last posting but I have been following all my teal sisters and have been very saddened at the losses.
I think we ALL deserve lots of hugs and good times.....
Mx0 -
I think I am lucky
I have not yet achieved remission and in a big way I feel lucky not to have the ups and downs of the ride with Ned. Waiting for test results drives me crazy and I have right from the beginning accepted that this will be a chronic condition that needs to be monitored closely.
I am very happy that my treatment seems to be working and when I had three months not cancer free but treatment free it was very nice. The longer you can stay in remission and be vigilant so you can fight it if it comes back and with women like Carlene and other doing clinical trial, we have hope and a chance at beating this disease.
It is no surprise that we could suffer from PTSD, we have been physically hurt (surgery and treatments)then emotionally attacked by just the grim diagnosis then you add everything you are going thru with the loss of your husband. You are doing amazing actually! Take care of yourself and give yourself time to heal. Do what makes you happy.
Colleen0 -
thanks ladies for yourCafewoman53 said:I think I am lucky
I have not yet achieved remission and in a big way I feel lucky not to have the ups and downs of the ride with Ned. Waiting for test results drives me crazy and I have right from the beginning accepted that this will be a chronic condition that needs to be monitored closely.
I am very happy that my treatment seems to be working and when I had three months not cancer free but treatment free it was very nice. The longer you can stay in remission and be vigilant so you can fight it if it comes back and with women like Carlene and other doing clinical trial, we have hope and a chance at beating this disease.
It is no surprise that we could suffer from PTSD, we have been physically hurt (surgery and treatments)then emotionally attacked by just the grim diagnosis then you add everything you are going thru with the loss of your husband. You are doing amazing actually! Take care of yourself and give yourself time to heal. Do what makes you happy.
Colleen
thanks ladies for your encouragement and comments. I just now had a long time friend tell me on FB that she wants me to move on with my life. I told her I would as I am ready. I've been through too much. I can't push myself any longer. I nearly had a nervous breakdown after I got sick and realized I most like had OVCA. I have to adjust to life without my Mom, my husband, many of our belongings, and living with a chronic disease. Also adjusting to the "empty nest." Can't be done in a short time period.
Carla0 -
Oops double posted
Oops double posted0 -
I hear you Mom2Great Kids
First of all my heart goes out to you for your loss. I could have been reading my story. I was first DX in August 2009 and went into remission after surgery and 6 rnds of chemo. Praise God it lasted 13 months. In Feruary 2011 I heard those dreaded words..."it's back" and started another 6 rnds of chemo. Only this time is was different as I did not have my soul mate and husband of 37 years by my side. He went into the hospital on April 24 (Easter) and after 3 months in ICU and 6 ops, he died in July one week after his birthday. I should have finished my 6 rnds by early June, but since it was always been just the 2 of us (no children nor family members close by) I spent everday at the hospital and stretched my treatments to every 5 weeks instead of 3. I just went to for my CT & blood work up last week only to learn my numbers are going up again.
It's hard to deal with because I too lost my mother in this timeframe. So the two most understanding people I could count on are gone. Other family members and friends think that "well, she's been through this before and she can do it again". When I try to explain the prognosis for this disease isn't a cure..they think I'm being negative and surely I'll be the exception. I know their hearts are in the right place and the want to lift me up and encourage me...but they don't see the heartache I have facing this alone. They don't recogtnize the angst we go through each time we have a test and await the results. It's like having a gun pointed at you and you don't know if it'll shoot a blank or it will be the real deal.
I'm positive by nature, but I'm also very realistic. Will this be my end? I don't know. Maybe in a car wreck or one of my dust bunnies (can't keep up with housework) may attack me.
I'm thankful for this forum as I take inspiration from all of you. Stay strong. I do agree with the adage that what doesn't kill us make us stronger...but oh what a journey we face.
Thanks for letting me vent. I don't have anyone to chat with that truly understands or who can identify with the aspects of Having cancer and no cure.
Texan By Choice0 -
I
sorry...I hit enter too many times0
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