Feeling a Mixture of Emotions and Thoughts...
My radiated skin is still going through its process of breaking down and healing. It's painful, at times agonizing and most uncomfortable. Driving has even become unpleasant. However, I've been told to continue to do my daily stretches so I don't lose mobility. It's hard to stretch when your skin feels like it's going to rip apart at the seams quite literally.
I'm tired, fatigued, burnt out (no pun intended) and really, really fed up with living in pain every day. If it isn't the constant headaches, it's the lymphedema, or my tortured skin, or...
My head cold is still lingering, although I think it's beginning to dissipate slowly. Fingers crossed! I'm not sleeping well at all these days, despite sleeping meds, relaxation exercising, etc. I've been plagued with unpleasant dreams and nightmares, and feelings of all out anxiety.
Going back to a previous statement in an earlier post, I feel like the baby bird whose been pushed out of the sanctity of its nest and expected to all of a sudden know how to fly and navigate the world.
Throughout chemo and radiation I was sent in for regular MUGA heart function scans to check and see whether or not chemo or radiation had adversely affected my heart's function. Logically, one would think that one last MUGA Scan would have been ordered post radiation, but no such luck.
This is what I find so disconcerting. All the testing and checks magically end with treatment; with the exception of the three and six month check ups with my primary oncologist and GP, and mammogram. Before chemo started I was sent in for detailed chest x-rays and a detailed abdominal ultra sound to check for any signs of cancer metastasis. When I recently asked my oncologist for additional scans and such post treatment, he told me no. In fact, he said any further scans would not be warranted unless there were obvious outward signs of metastasis.
Please don't get me wrong. I'm not looking for trouble. I'm not anticipating such metastasis, but it is the principal I'm arguing here. No one on my medical team can give me any certainties or guarantees about my future medically with respect to cancer. How then, can they with certainty rule out the need for follow up scans post treatment? I haven't even had my WBC (white blood cell counts) tested since March 30, 2011.
I'm not looking for guarantees, I'm craving peace of mind and right now I don't have that. Not about my health or my life right now.
I've been feeling increasingly down all week. Emotionally, physically and mentally. I have many things on my mind that I'm trying to sort through and feel as though I'm moving three steps forward, two steps backward in the progress department.
I feel lost in a way. I feel isolated. I feel frustrated and angry, relieved and anxious all at once. I've been told that my "new" life after cancer has begun. What the hell is that supposed to mean really? Maybe I'm supposed to feel happy and anticipatory for lays ahead? Maybe I would if I had the slightest clue as to what that could possibly be.
I'm laying myself bare here. As always, letting you know exactly how I feel and what I feel as I navigate this journey. I've tried to convince myself that everything will begin to improve and I will once again feel like myself. When I look at myself in the mirror and see the effects of what this disease has had on my body, and feel what it has done to me emotionally and psychologically, I know I will never be myself as I was pre-cancer ever again.
Having had the worst experience with every step of this journey it is hard for me to feel anything other than what I am feeling at this point.
Summer is drawing to an end and I hardly noticed when it began. The last 12 months have in many ways been a blur. Maybe that's the problem. Now that cancer treatment has ended, I'm now beginning to see every detail of the last 12 months and realize fully the battle I've been immersed in. Even though the battle has been won, the war continues and I, now more than ever before, must be diligent and calculating in my strategies regarding my health and welfare.
I feel as though I won't really get a good start on that until the kids are back in school and life's routines have been restored. Just 16 days to go.
Beth and Isabel go back to day camp next week for the whole week. Mary will not be returning from her trip for another 12 days.
Scott's job is evolving in ways that give us no more answers or security than we've had for the last several months. In fact, if anything, work for Scott has become more demanding and stress filled.
My head is pounding right now, I feel sick to my stomach and really wish I could be somewhere peaceful and quiet to really sleep in a way that when I awake I feel rested mentally and physically. I long for my energy levels to return back to normal. I hate feeling sick, run down and in pain.
I hate what this disease has done to me, to us, to our life. I hate what this disease does to anyone. It robs and devastates us in so many ways. Am I stronger for it? Perhaps, in fact in some ways I am certain I am. But, I also feel incredibly vulnerable.
Comments
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I wish I had a magic potion
I would use it for myself and share it with my pink sisters. I finished radiation 6 weeks ago and saw my MO 10 days after that. I asked her many of the questions that you have, how do I know what to watch for, how do I know I am having a problem when I didn't know it the first time? How do I get peace of mind? She told me we would do CT scans every 6 months then every year, etc We don't do PET scans because my RA would light up. She also said, you will know and you will have a lot of doctors around you to help you watch. HMMMMMMM, not much comfort in that. She told me I would be neurotic (my word not hers) for 3 years before my brain started to ease up on the fears, that is no guaruntee of what my cancer will do of course. I will say that the clear CT I had in April, the clear pap, the nearly normal lab work...just routine stuff my MO doesn't do tumor markers, has all helped. But now it is time for a biopsy of the lining of my uterus due to thickening found on a "routine" pelvic ultrasound. Should I add in the 2 cavities I have to have filled? BROTHER. I just want to get it all over with in 2011.
I am so sorry that you are having so much trouble, I so understand where you are. I have been so tempted to just check into a hotel for a whole weekend by myself and do nothing but sleep, but figure I wouldn't be able to and would just be in an unfamiliar bed in an unfamiliar room staring at the ceiling.
I wish you peace and the strength to hold on because I do think it will get better, it has for me in the last 6 weeks.... I won't say it's perfect or back like it was....just better.
It sounds like all of your stresses are catching up with you and I wish I had the answers to make them go away...I don't, but I will be thinking of you as you ride this roller coaster.
Take care of yourself and be sure to do something nice for yourself today and every day, you deserve it,
Jennifer0 -
My first surgeon said itgrams2jc said:I wish I had a magic potion
I would use it for myself and share it with my pink sisters. I finished radiation 6 weeks ago and saw my MO 10 days after that. I asked her many of the questions that you have, how do I know what to watch for, how do I know I am having a problem when I didn't know it the first time? How do I get peace of mind? She told me we would do CT scans every 6 months then every year, etc We don't do PET scans because my RA would light up. She also said, you will know and you will have a lot of doctors around you to help you watch. HMMMMMMM, not much comfort in that. She told me I would be neurotic (my word not hers) for 3 years before my brain started to ease up on the fears, that is no guaruntee of what my cancer will do of course. I will say that the clear CT I had in April, the clear pap, the nearly normal lab work...just routine stuff my MO doesn't do tumor markers, has all helped. But now it is time for a biopsy of the lining of my uterus due to thickening found on a "routine" pelvic ultrasound. Should I add in the 2 cavities I have to have filled? BROTHER. I just want to get it all over with in 2011.
I am so sorry that you are having so much trouble, I so understand where you are. I have been so tempted to just check into a hotel for a whole weekend by myself and do nothing but sleep, but figure I wouldn't be able to and would just be in an unfamiliar bed in an unfamiliar room staring at the ceiling.
I wish you peace and the strength to hold on because I do think it will get better, it has for me in the last 6 weeks.... I won't say it's perfect or back like it was....just better.
It sounds like all of your stresses are catching up with you and I wish I had the answers to make them go away...I don't, but I will be thinking of you as you ride this roller coaster.
Take care of yourself and be sure to do something nice for yourself today and every day, you deserve it,
Jennifer
My first surgeon said it would be'tincture of time" My first diagnosis was in 1994, through the years its has been a slow process of putting it all together. My doc does not do follow up scans either. Life gets better (see post by Vickie Sam about getting her life back) Or Kathi and her travels. However life is still with its problems. I personally vote for if you have had cancer you are exempt from anything else but cant get that to happen LOL. What you are feeling is the after treatment letdown when you are no longer consumed by treatment and are actively fighting. Life will kick in, people get demanding and you will get to feeling "wait a minute....." There are many survivors here to give you hope. As far as fighting try to concentrate on good nutrition, exersize and healing, so your body can keep fighting. That always makes me feel like I am doing something!!!!0 -
Here is a hug, emamei. I've
Here is a hug, emamei. I've been where you are and it does get better. What you are experiencing is normal . It's hard to feel so vulnerable with no medical weapons at hand. Time will give you a new perspective. If you need help getting through this period, don't be afraid to ask for it. For some it's therapy, or meds, or yoga,or meditation or other spiritual help. Or all of the above. But like I said, it DOES get better. xoxoxo Lynn0 -
I agree with Pennycarkris said:My first surgeon said it
My first surgeon said it would be'tincture of time" My first diagnosis was in 1994, through the years its has been a slow process of putting it all together. My doc does not do follow up scans either. Life gets better (see post by Vickie Sam about getting her life back) Or Kathi and her travels. However life is still with its problems. I personally vote for if you have had cancer you are exempt from anything else but cant get that to happen LOL. What you are feeling is the after treatment letdown when you are no longer consumed by treatment and are actively fighting. Life will kick in, people get demanding and you will get to feeling "wait a minute....." There are many survivors here to give you hope. As far as fighting try to concentrate on good nutrition, exersize and healing, so your body can keep fighting. That always makes me feel like I am doing something!!!!
Maria,
Please focus on something good, like your daughter new drawing, back to school shopping or stars on the sky.
Please continue seeing therapist and psychiatrist on regular basis, maybe weekly appointments with both can be helpful. If you need to take medication please do not forget about it.
I was diagnosed with stage III C three years ago. I had Pet Scan only once in 2008. Your doctor is correct, standards of care do not recommend scans on regular basis, only if there is a concern of metastasis . Plus your insurance most likely will deny it.
When I finished invasive treatment 2 years ago I believed it was my job and duty to come back in full capacity. I am still not there, working hard towards my goal, keep taking baby steps every day.
Nutrition is very important, please take care of it, I have had 20 acupuncture treatment to help with fatigue. Physical therapy has been very useful in many ways. Walking in the park or exciting trip or vacation.
You will feel better, Please take charge and time will heal you
Sending you courage and love
New Flower0 -
You're not alone and one dayjamiegww said:Hope you are feeling better and got some sleep.
I just wanted to send you a BIG HUG!!!
Jamie
You're not alone and one day soon you'll crawl your way out of this. A lot of us understand what you're going thru, we've been there too. But life does get better. Hold on, you're almost there. We're cheering you on and sending you hugs.0 -
((Hug))
I wish I could wave my wand and make you feel better. This, too, shall pass.
I am in a similar position wondering what scans should be done at what point in my journey. I don't think you should force the issue before you are feeling better, but at some point you may want to talk to your medical team about it. Say, "I really think I should have a post-treatment MUGA scan to confirm that my heart wasn't damaged." If they say you don't need it, insist that they explain clearly, to the point where you understand their reasons exactly or understand that you are not going to agree, in which case you may need a second opinion. I always tell people "If you can explain it, I can understand it."
Focus on feeling better, and when you do it will be time to think about the MUGA scan. I don't think it's urgent -- if you do, then get someone to go with you and help you make your point. If you are tired and worn out, you might give in just to avoid conflict. That's when your advocate needs to step up.
Good luck!0 -
Yep, it gets better. .mollieb said:((Hug))
I wish I could wave my wand and make you feel better. This, too, shall pass.
I am in a similar position wondering what scans should be done at what point in my journey. I don't think you should force the issue before you are feeling better, but at some point you may want to talk to your medical team about it. Say, "I really think I should have a post-treatment MUGA scan to confirm that my heart wasn't damaged." If they say you don't need it, insist that they explain clearly, to the point where you understand their reasons exactly or understand that you are not going to agree, in which case you may need a second opinion. I always tell people "If you can explain it, I can understand it."
Focus on feeling better, and when you do it will be time to think about the MUGA scan. I don't think it's urgent -- if you do, then get someone to go with you and help you make your point. If you are tired and worn out, you might give in just to avoid conflict. That's when your advocate needs to step up.
Good luck!
and then it pops up and slaps you again when you least expect it. I think we have to accept that this happens. It's part of having cancer, but if it is consuming, or extreme, we need to pay attention and seek help. I have had some pretty significant mood swings these past 18 months, but I think they're normal (I hope they are).
I do have a thought about the tests you had during treatment. It's just a thought,but to me it makes sense. The tests done during treatment are to be sure we're strong enough to withstand the next treatment. They're done doing things to you now and you're healing, not being bombarded with further poisons to cause potential damage, and the news is good that there wasn't any and so there is no reason to think there will be any down the road. Had you had damage, then they'd need to be sure it was improving and not getting worse, but there's no reason to think you will still get damage - or something like that. (Remember, I don't know what I'm talking about)
I think we all worry about scans or no scans. I asked my onc if we were doing enough because I think I'm "special" having had 2 primary cancers at the same time. She said we were just fine with only blood work every 4 months and exams every 6 months. Do I feel secure? No. But if she would have said ok, let's do this, that, or the other thing, I would have been worried that she thinks there's something to be on the lookout for. This cancer thing just doesn't play fair - with either our emotions or physical responses to treatments.
And, the is nothing wrong with asking your onc why s/he isn't suggesting this or that for you. Nor is there anything wrong with getting a second opinion.
Good luck. We're here and we understand.
Suzanne0 -
Oh, sweetie, we certainly do understandDouble Whammy said:Yep, it gets better. .
and then it pops up and slaps you again when you least expect it. I think we have to accept that this happens. It's part of having cancer, but if it is consuming, or extreme, we need to pay attention and seek help. I have had some pretty significant mood swings these past 18 months, but I think they're normal (I hope they are).
I do have a thought about the tests you had during treatment. It's just a thought,but to me it makes sense. The tests done during treatment are to be sure we're strong enough to withstand the next treatment. They're done doing things to you now and you're healing, not being bombarded with further poisons to cause potential damage, and the news is good that there wasn't any and so there is no reason to think there will be any down the road. Had you had damage, then they'd need to be sure it was improving and not getting worse, but there's no reason to think you will still get damage - or something like that. (Remember, I don't know what I'm talking about)
I think we all worry about scans or no scans. I asked my onc if we were doing enough because I think I'm "special" having had 2 primary cancers at the same time. She said we were just fine with only blood work every 4 months and exams every 6 months. Do I feel secure? No. But if she would have said ok, let's do this, that, or the other thing, I would have been worried that she thinks there's something to be on the lookout for. This cancer thing just doesn't play fair - with either our emotions or physical responses to treatments.
And, the is nothing wrong with asking your onc why s/he isn't suggesting this or that for you. Nor is there anything wrong with getting a second opinion.
Good luck. We're here and we understand.
Suzanne
I was diagnosed in Nov. '09 (Stage 3C), have had surgeries, 6 rounds of TAC and 33 rads--all ending last year at this time. As far as I'm concerned, right now anyway, there is no "peace of mind" for me--not yet anyway. I just hear and read about too many of us who are 2 years, 5 years, 10 years, 20 years out-- and have recurrences. I try my darnedest not to dwell on the possibility and try to stay positive and some days I'm pretty successful, but like Suzanne above said--the negative thoughts sneak up and slap you again and again.
I've had the talks with my doctors about periodic testing--and they sort of agree with most in that we'll do PET scans, etc. if you're having symptoms--my onc. uses the "two week rule." If anything is hurting or bothering me for more than 2 weeks (other than the normal pain I have--lymphedema, scar tissue in my breast, etc.) then we check it out. I did just have a 6-month check--mammo, ultrasound, breast MRI and they came back okay. Am I happy about that--absolutely. Do I have peace of mind now--not really. This is what I try to relate to people who have never had breast cancer--it's never really over. And, until we find a cure--it really won't ever be. The trick is to find joy in life every day and try to live each day to the fullest, which I think is the goal of all of us.
I hope you are able to find some peace in your heart--at least today.
Hugs, Renee0 -
we can all understand the feelingsmissrenee said:Oh, sweetie, we certainly do understand
I was diagnosed in Nov. '09 (Stage 3C), have had surgeries, 6 rounds of TAC and 33 rads--all ending last year at this time. As far as I'm concerned, right now anyway, there is no "peace of mind" for me--not yet anyway. I just hear and read about too many of us who are 2 years, 5 years, 10 years, 20 years out-- and have recurrences. I try my darnedest not to dwell on the possibility and try to stay positive and some days I'm pretty successful, but like Suzanne above said--the negative thoughts sneak up and slap you again and again.
I've had the talks with my doctors about periodic testing--and they sort of agree with most in that we'll do PET scans, etc. if you're having symptoms--my onc. uses the "two week rule." If anything is hurting or bothering me for more than 2 weeks (other than the normal pain I have--lymphedema, scar tissue in my breast, etc.) then we check it out. I did just have a 6-month check--mammo, ultrasound, breast MRI and they came back okay. Am I happy about that--absolutely. Do I have peace of mind now--not really. This is what I try to relate to people who have never had breast cancer--it's never really over. And, until we find a cure--it really won't ever be. The trick is to find joy in life every day and try to live each day to the fullest, which I think is the goal of all of us.
I hope you are able to find some peace in your heart--at least today.
Hugs, Renee
I'm also nearing the end of my treatment and part of my ugly truth is that I don;t actually want my treatment to be over. I'm currently doing radiation and Xeloda and it helps me to feel "safe" knowing that I am getting something every day to help fight the cancer. During the month between chemo and surgery and then the other month between surgery and radiation I was in much worse emotional shape than while I was under treatment. I think it is totally normal to have fears after treatment finishes since we are so closely monitored during treatment and then after that it can feel like we are being told "OK, you're in your own now."
I am hoping it gets better as time goes on. Many people have told me that it does but it is hard to see when you are in the middle of it.
Hang in there,
Laura0 -
I totally get it!
I can't use words as well as most of you so bear with me.
I have been part of this Stress Management Class for Cancer Survivors for the past few weeks. On my way there last week I realized that since my diagnoses I have been in "fight or flight" mode. Mostly fighting and being sure everything is done that can be to defeat this beast. I don't think I have totally "dealt" with the fact that I have cancer. What ever that means. I am not sure if there is more "dealing" to do, but I have questions. Things like what that means to me right now? What it means for the future? Will I see my grand kids grow up? Why couldn't my sister still be here to help me? (she died 6 years ago) How does this effect my adult daughters? How can life be "normal" again? I have more questions but there really isn't enough time......
I remember when my youngest daughter was 10 she was diagnosed with epilepsy. We were home one saturday night, cleaning the freezer. We were chatting and listening to music. She went to use the bathroom and eventually, I went to look for her because I thought she had gotten side tracked. I found her unconscious on the bathroom floor. She had had her first grand mall seizure. I got thru the crisis, getting her to the ER. The CT, x-rays, blood work and such I was calm and collected. When it was all done, I cried like a baby. It was, at the time, one of the more scary days of my life.
I don't know if it is as much the end of treatment now or if it is finally time to step out of the "fight or flight" mode.
Maybe it is time to cry like a baby.......0 -
I HEAR YOU!
Emamei,
I can completely understand your feelings! I went through treament last year and on my last day of radiation, I sat in my car and cried like you wouldn't believe. I was scared, angry, frustrated, relieved, etc. That was Oct 2010. Over the next few months, I began feeling a little stronger physically and then things started to hit me mentally. Why wouldn't the docs do a whole body scan to be sure I don't have any cancer? I was frustrated. What the hell is a 'new normal"? I don't want it-I want the old me back. Why do I have to feel stiff and discomfort from meds? Why can't I think straight? Where did all my help go? Why? Why? Why? I realized as I was getting better how I never really dealt with the fact that I had cancer. I just went through the motions and it is all hitting me now. I realized only I could change my thoughts. I need to look ahead and not look back. I need to be more positive. I need to not dwell on the 'what if'. I also began going to a counselor, which I think helps.
Someone once told me that after cancer treatment some people get PTSD symptoms. I think they were right.
Your feelings are so normal! It takes time, so give yourself that. It might also take counseling. I hope you might consider that too. Take one day at a time, it will get better.
Chris0
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