Finding survivorship harder than treatment, am I alone?

mcarva
mcarva Member Posts: 17
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi,

This is my first post, although I have been a silent member for a little bit. I was diagnosed with Stage 2A, nodular sclerosis Hodgkins Lymphoma in May of 2007. I was 48 years old at the time and had just celebrated my 25th wedding anniversary. I had 6 rounds of ABVD, no rads. Went into early remission and basically did not have any problems with the treatments. I also found at the time that I became very spiritual, positive and a real believer that I would beat this and never have to deal with it again. I am now 1 1/2 years in remission and I feel things are "falling apart." I get depressed and very fearful that it is going to come back again, or that I will get another type of lymphoma or that something else will show up on my scan. I know this is not the way to live and it does kind of surprise me because I was so strong during treatment. I never complained, worked full time, and the only hurdle I had was a short hospitalization due to low blood counts. It didn't bother me that my hair thinned so much I had to wear a wig (in fact, I loved my wig) and I seemed to appreciate and notice all the "little things" in life. I now feel like a sitting duck, just waiting for the other shoe to drop. I want to feel the peace and positiveness I felt when I was going through treatment, and all I feel now is lonely and fearful. If anyone else has had these feelings, I would love to hear your story and any coping tips you can give me.
God Bless.
Mary Ann
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Comments

  • hodgkoid2003
    hodgkoid2003 Member Posts: 94
    #2
    Survivorship
    Mary Ann,

    First, please know that how you feel is normal. And having BTDT, I will tell you that it does get easier. I am over 19 years out now for HD, stage 3, NS. You will find, that soon your oncology follow-ups will start getting further apart, and that means simply, your chances of survivorship are increasing each day. Soon, you will hit year number 5 and then you will be offering encouragement.

    It is one thing to be diligent about follow up care, but it is almost expected to be paranoid. You've faced such a tough fight, with something that decades ago killed. It was one of the scariest times in my life, and I'm sure you may feel that way also. But 25 years of marriage, congratulations on that as well.

    Do not be afraid to vent, seek out support. There are so many out here who have been there, done that.

    Paul E., (Hodgkoid2003)
  • blueroses
    blueroses Member Posts: 524
    #3
    Completely Normal MaryAnn
    First of all welcome to the discussion boards. I am sure you will soon find that you are not alone in your journey after cancer diagnosis, wherever your journey may lead you.

    You may as well have put my name on the bottom of your post, at some point in my journey, and I know that many others on here would feel the same way. Of course there is fear involved and of course depression can rear its ugly head but the trick is not to get burdened down by either of those things or any other phase you might get into, like anger for example. If you find that depression or any other symptom is overwhelming your life and you are not finding enjoyment in the things you used to enjoy then it's time to seek professional help with a good grief counsellor or someone like a minister who you might feel better with. We go to family doctors when we have something amiss with our bodies but people seem so hesitant to get any help with psychological issues and I don't know why that is. You are not crazy you just might need help getting through rough spots or major fear with say depression.

    I am a 20 year survivor oh NHL and when I feel myself getting too down or angry or whatever I check in with my psychologist just to make sure I am thinking straight and haven't gotten myself into a bad place and it always works. I have developed an anxiety condition because of so much medical intervention and when I feel extra anxious I have meds at home to help me through but most months I don't need even one.

    You will also find this discussion board very freeing, you can say exactly how you feel and no one will judge you and will most likely help to validate you in many areas of this journey. If they don't agree with you they will tell you but they will do so in a very kind and reassuring way, many of them loaded with helpful suggestions. Our friends and family want the best for us and their support is invaluable but unless you have been there as a cancer survivor they really can't totally understand where you are coming from but we can.

    So once again welcome to the board, post as often as you feel the need to. We also have a live chatroom here on this site if you want to talk to others on a more active basis. Often times we can get through the first stages after diagnosis with courage and conviction but it isn't until months later that we start feeling ourselves falling apart so again, you aren't alone in how you are feeling.

    Hope to see you again on the boards. Blessings, Blueroses
  • midwest-mom
    midwest-mom Member Posts: 3
    #4
    Me too
    Hello Mary Ann,

    I am new to the site also, I just learned about this site after contcting ACS for help. I have been feeling so alone and helpless.

    I was diagnosed with Hodgkin Lymphoma stage-4, in June 2007. I was told that it had went into my liver and lungs but still had a good chance of beatting it. I went through 8 cycles of ABVD. I have been in remission for 15 months now. I have many side affects from chemo.
    I have been raised in the church all of my life and very spiritual. I never once thought that I was going to die from cancer. I just thought of it as a nother phase of life I will beat it and go on. I am just finding it harder to go on. I have always been a very independent person and could look at any situationa and decide what is the best action to take. Now its hard for me to decide what to make for lunch.
    I'm a single Mom and my daughter is a great help in my motivation to keep moving forward it is just getting harder and more emotional for me.
    I don't know if this has helped you but it sure has helped me just putting it out there. This is the first time that I have really let myself say this out loud.
    Good Luck,
    Tabytha
  • KYPam
    KYPam Member Posts: 6
    #5
    Mary Ann,
    I feel exactly the
    Mary Ann,

    I feel exactly the same as you do. I am 1 year past dx. I am not
    in remission yet, but awfully close. Treatment has ended and I do
    worry alot. I feel alone, also. My husband doesn't really understand
    that I don't feel well most of the time. The fatigue is really bad.
    I have follicular lymphoma, Stage 3B, Grade 3.
    People always say that I look healthy. I never lost my hair, it just
    got thinner. I was told at dx that it would come back no matter what,
    just a matter of when. I am 42. I think we fall apart after treatment,
    surgeries, tests, etc. b/c we exhaust overselves during treatments to
    remain so strong. I tried hard not to cry too much in front of family
    b/c they were having a more difficult time than me dealing with it,
    especially my husband.
    I believe that women try so hard to take care of everyone and be super
    woman that we collapse once we feel that everyone around us is safe and
    content.
    I try to focus on all the positives and stay as active as my body will
    allow. Cancer changed my life and my idea of "normal." That is hard to
    accept. I am finishing up the last details for my daughter's October
    wedding and am trying to take care of my mom and dad so I usually feel
    overwhelmed. I only have 1 more work day b/c I work in the school system.
    I get about 8 weeks off during summer which is really nice. I work in a
    high school. The teenagers keep you feeling young. I enjoy it.
    I would love to chat again.

    Best wishes,

    Pam
  • mcarva
    mcarva Member Posts: 17
    #6
    hodgkoid2003 said:

    Survivorship
    Mary Ann,

    First, please know that how you feel is normal. And having BTDT, I will tell you that it does get easier. I am over 19 years out now for HD, stage 3, NS. You will find, that soon your oncology follow-ups will start getting further apart, and that means simply, your chances of survivorship are increasing each day. Soon, you will hit year number 5 and then you will be offering encouragement.

    It is one thing to be diligent about follow up care, but it is almost expected to be paranoid. You've faced such a tough fight, with something that decades ago killed. It was one of the scariest times in my life, and I'm sure you may feel that way also. But 25 years of marriage, congratulations on that as well.

    Do not be afraid to vent, seek out support. There are so many out here who have been there, done that.

    Paul E., (Hodgkoid2003)

    Hi Paul,
    Thank you for your
    Hi Paul,

    Thank you for your support. I find it hard to believe now that it will get easier, I am so worried about relapsing. Maybe I am being paranoid, but I seem to feel that relapse is more common in Lymphoma than other cancers. Is that my hypochondria talking or is there some truth to that? I saw on some of your other posts that you mention long term effects clinics. Of course, I know I am not anywhere near long term yet (hope to get there, though), but it is something I will look into when the time is right. I do have a question about bleo and lung function. I went through 12 treatments of ABVD and when I hit my 10th treatment, my pulmonary function tests showed my lung capacity had decreased but my oncologist did not feel it was enough to stop the bleo. So I continued with the full course of treatment. I did not have radiation. When I had finished treatment, I felt that I could not take a full breath in, it was like my breath was getting "stuck." I don't have that feeling anymore but I do notice that my breath kind of gets "stuck" when I am talking in long sentences. It's like I don't have enough air to finish, if that makes sense. Did you experience anything like that and if so, do you know of anything I can do to increase my lung capacity? Being a hypochondriac all my life, I am very vigilent about having all my regular screening tests, in addition to my onc checkups. Although the hypochondria has been a thorn in my side (and not easy on my husband or children either) I feel this time it saved my life because it was so hard for me to get diagnosed andI just kept pursuing it and sought a second opinion. I wasn't listened to by several doctors. This has caused a lot of anger and I know it is not helpful to my healing. I am so happy for you that you are 19 years out and it certainly is encouraging for me to hear that. Any suggestions you might have for me on how to stay positive would be very much appreciated.
    Much peace,
    Mary Ann
  • hodgkoid2003
    hodgkoid2003 Member Posts: 94
    #7
    mcarva said:

    Hi Paul,
    Thank you for your
    Hi Paul,

    Thank you for your support. I find it hard to believe now that it will get easier, I am so worried about relapsing. Maybe I am being paranoid, but I seem to feel that relapse is more common in Lymphoma than other cancers. Is that my hypochondria talking or is there some truth to that? I saw on some of your other posts that you mention long term effects clinics. Of course, I know I am not anywhere near long term yet (hope to get there, though), but it is something I will look into when the time is right. I do have a question about bleo and lung function. I went through 12 treatments of ABVD and when I hit my 10th treatment, my pulmonary function tests showed my lung capacity had decreased but my oncologist did not feel it was enough to stop the bleo. So I continued with the full course of treatment. I did not have radiation. When I had finished treatment, I felt that I could not take a full breath in, it was like my breath was getting "stuck." I don't have that feeling anymore but I do notice that my breath kind of gets "stuck" when I am talking in long sentences. It's like I don't have enough air to finish, if that makes sense. Did you experience anything like that and if so, do you know of anything I can do to increase my lung capacity? Being a hypochondriac all my life, I am very vigilent about having all my regular screening tests, in addition to my onc checkups. Although the hypochondria has been a thorn in my side (and not easy on my husband or children either) I feel this time it saved my life because it was so hard for me to get diagnosed andI just kept pursuing it and sought a second opinion. I wasn't listened to by several doctors. This has caused a lot of anger and I know it is not helpful to my healing. I am so happy for you that you are 19 years out and it certainly is encouraging for me to hear that. Any suggestions you might have for me on how to stay positive would be very much appreciated.
    Much peace,
    Mary Ann

    Bleo/Radiation/Late Effects
    Mary Ann,

    I was aware at the time (1988) that Bleo could have an effect on my lungs, and I do recall having an arterial blood test (much less fun than a regular test for a needle-phobe like me), due to breathing issues. To my understanding, the radiation is what caused my problems. I also remember having breathing issues (I assume due to the bleo) and they stopped when treatments were completed.
    Please do not ever feel that your fear of relapse is due to hypochondria. It is totally normal. I went through it also. In fact, I go through something similar now, though not HD relapse, more late effect issues (what's next) following my heart surgery last year.
    The biggest advice that I could give to you, is don't ever feel the need to give up seeing an oncologist. There are so many guidelines to help survivors get through, that we didn't have decades ago.

    Paul E. (Hodgkoid2003)
  • mcarva
    mcarva Member Posts: 17
    #8
    midwest-mom said:

    Me too
    Hello Mary Ann,

    I am new to the site also, I just learned about this site after contcting ACS for help. I have been feeling so alone and helpless.

    I was diagnosed with Hodgkin Lymphoma stage-4, in June 2007. I was told that it had went into my liver and lungs but still had a good chance of beatting it. I went through 8 cycles of ABVD. I have been in remission for 15 months now. I have many side affects from chemo.
    I have been raised in the church all of my life and very spiritual. I never once thought that I was going to die from cancer. I just thought of it as a nother phase of life I will beat it and go on. I am just finding it harder to go on. I have always been a very independent person and could look at any situationa and decide what is the best action to take. Now its hard for me to decide what to make for lunch.
    I'm a single Mom and my daughter is a great help in my motivation to keep moving forward it is just getting harder and more emotional for me.
    I don't know if this has helped you but it sure has helped me just putting it out there. This is the first time that I have really let myself say this out loud.
    Good Luck,
    Tabytha

    I guess I'm not alone
    Hi Tabytha,

    My goodness you were diagnosed in June of 2007 and I was diagnosed in May of 2007 and finished chemo in November of 2007. I had 6 cycles of ABVD. What side affects are you still experiencing from the chemo? Our stories sound alike in a lot of ways. When I was in treatment, I felt so strong, positive and determined. The longer I stay in remission, the harder it gets for some reason. I try to plan activities that are fun but there is that nagging thought in the back of my head that what if it comes back and I can't go? I'm afraid to look too far into the future because I don't want to get disappointed if it should rear its ugly head again. That's wonderful you have your daughter who helps to motivate you. I don't know if you would consider this, but I am in therapy and it does help. However, I think I need to find a therapist or social worker who specializes in counseling people who have survived cancer. Or maybe find a support group. I try to read inspirational books and that does help, but sometimes I just get so caught up in my fear of relapsing that I can't bring myself to do much more than the bare necessities, such as working and taking care of the house. It's like I get in a rut. I'm glad you feel better that you expressed how you are feeling. We are all here to help each other and I am here anytime you want to chat.
    Mary Ann
  • tim4343
    tim4343 Member Posts: 23
    #9
    Just Starting
    Well after reading the posts here it gives me a lot of hope for myself , have just started seing oncologist 4 weeks out have enlarged lympnodes in chestsome are about 1 inch , and now have discovered skin lymphoma ??? also scheduled for surgery for biopsy this month but all the stories here give me a lot of strength and actual ake me smile because of all the comments and encouragement people give each other thats a plus Keep itup everyone the world needs more people like each one on here AGAPE/
  • mcarva
    mcarva Member Posts: 17
    #10
    KYPam said:

    Mary Ann,
    I feel exactly the
    Mary Ann,

    I feel exactly the same as you do. I am 1 year past dx. I am not
    in remission yet, but awfully close. Treatment has ended and I do
    worry alot. I feel alone, also. My husband doesn't really understand
    that I don't feel well most of the time. The fatigue is really bad.
    I have follicular lymphoma, Stage 3B, Grade 3.
    People always say that I look healthy. I never lost my hair, it just
    got thinner. I was told at dx that it would come back no matter what,
    just a matter of when. I am 42. I think we fall apart after treatment,
    surgeries, tests, etc. b/c we exhaust overselves during treatments to
    remain so strong. I tried hard not to cry too much in front of family
    b/c they were having a more difficult time than me dealing with it,
    especially my husband.
    I believe that women try so hard to take care of everyone and be super
    woman that we collapse once we feel that everyone around us is safe and
    content.
    I try to focus on all the positives and stay as active as my body will
    allow. Cancer changed my life and my idea of "normal." That is hard to
    accept. I am finishing up the last details for my daughter's October
    wedding and am trying to take care of my mom and dad so I usually feel
    overwhelmed. I only have 1 more work day b/c I work in the school system.
    I get about 8 weeks off during summer which is really nice. I work in a
    high school. The teenagers keep you feeling young. I enjoy it.
    I would love to chat again.

    Best wishes,

    Pam

    I know just what you mean
    Hi Pam,

    First of all, let me send you good thoughts for a speedy remission. Isn't the worry just so draining? Your post sounds so much like what I am going through. My husband was supportive when I was going through treatment, but to be honest with you, I went through treatment rather easily. I worked full time, was not sick, and only had a few bouts of fatigue where I could not get off the couch. I did lose most of my hair and wore a wig so I did not look or act like a typical "cancer" patient, whatever that is. Now that treatment is over and I am in remission, he doesn't quite understand all my worry and anxiety. When I say I'm afraid it is going to come back, he says "no, you beat it." I think he is trying to be encouraging but that's not what I need to hear, although I would give anything to know that statement was true. Everytime I am tired or my neck feels funny or something else is not quite right, I just "know" it has come back. I try to keep myself busy as best as I can but it's so hard. I have a great family and a 10 month old grandson, whom I just adore. You're right, kids do keep you young. I just feel so "exposed" and out there. No comfort zone. Kind of like a sitting duck, just waiting. It stinks. Therapy only helps so much; I know I have to do a lot of the work myself. I'm starting to realize that cancer is a lifelong thing; it's not over when you are in remission or even when your doctor says you are cured. Then there's the long term effects of treatment to deal with. Well, on a good note congratulations on your daughter's upcoming wedding; you must be so happy about that. My cousin is taking care of her elderly mother 24/7 and I just don't know how she does it. God bless her I tell her she has angel wings on. I can only imagine how overwhelming that must be for you to deal with in addition to your own health concerns. Please try to take time for yourself and treasure each moment, it's what we all need to do. P.S. I envy your 8 weeks off in the summer lol. I'm still trying to hit the lottery! Take care,
    Mary Ann
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #11
    tim4343 said:

    Just Starting
    Well after reading the posts here it gives me a lot of hope for myself , have just started seing oncologist 4 weeks out have enlarged lympnodes in chestsome are about 1 inch , and now have discovered skin lymphoma ??? also scheduled for surgery for biopsy this month but all the stories here give me a lot of strength and actual ake me smile because of all the comments and encouragement people give each other thats a plus Keep itup everyone the world needs more people like each one on here AGAPE/

    Welcome to our hope
    Tim

    I wish you the best of luck with your upcoming biopsy. This cancer is not fun, but we can do this. We just need the tools. We need peace of mind. We need hope. Once the tests are done this gets going so darned fast our heads spin. We come here for compassion and hope. Keep the humor going....it REALLY helps. Come to CSN chatrooms.

    Good Luck my friend,

    Beth
  • Dee1217
    Dee1217 Member Posts: 2
    #12
    dixiegirl said:

    Welcome to our hope
    Tim

    I wish you the best of luck with your upcoming biopsy. This cancer is not fun, but we can do this. We just need the tools. We need peace of mind. We need hope. Once the tests are done this gets going so darned fast our heads spin. We come here for compassion and hope. Keep the humor going....it REALLY helps. Come to CSN chatrooms.

    Good Luck my friend,

    Beth

    No, your not alone
    I too find it really hard to be a survivor. Some think now that treatment is done and my hair is back that I'm fine. When reality is, I'm not. My joints hurt every day, I am now single so life is totally different for me. I dread everytime I have to call my pcp because they don't want to treat me because I've had cancer and oncologist don't want to see me cause I'm not "in treatment" anymore. I get very tired of feeling like a yo-yo.
  • judyy
    judyy Member Posts: 19
    #13
    holding on to hope
    Hello Everyone,
    It is great to know that others are feeling the same way as I That sounds strange, you know what I mean ha. I have DLCBL stage IV. The lymphoma is in my bone marrow in my left hip.
    I completed my treatments on April 29. no remission unfortunatly. But everything is smaller. I am having a BMB this Friday. I hate it and it is making me sick just knowing it is coming.
    Anyway, I two find it so hard after treatment I thought it was because I did not get remission, but I see that it is just hard. I have the same fear and dread and am wishing I was back on the Chemo. at least I was doing something then Now I am just waiting. !!
    My husband died in 2004 so it is just me and my children who are grown and married. I so wish for a spouse. I am very blessed and am feeling better that I have in a long while but there is always that darn but out there.
    Mary Ann I know what you mean about little things, I am absolutly in love with trees now. I always like them but I am just amazed by there beauty now. It is a crazy world we live in.. But still I want out of it so badly. I wish this was a dream. I am also falling apart at this point always on the verge of tears. maybe I shoud try some therpy. I really did not think it would help because reality can not be changed. You all seem to feel it helps so I will try. Did you go to someone who works with cancer patients or just anyone?

    Blessings to all
    Judy
  • Hestia
    Hestia Member Posts: 26
    #14
    I totally understand the
    I totally understand the shortness of breath. I get that and it is very scary to me. It often happens early AM when I am just waking up, in fact, sometimes it wakes me up. I can't get a deep breath. One of the things I have to do is force myself to calm down, to relax, yeah, right, relax while trying to breathe. The other thing I do is take as deep a breath as I can and hold to count of five. I draw in air thru mouth, let out thru nose. I try to remember to do this off and on during the day, to build up lung capacity. I finished chemo and radiation 4/22/09 and still have residual side effects, like the breathing issue, fatigue and food tastes funny (that is not a scientific description, but you know what I mean!!).
    There is a small plastic "thing" I was given in hospital to breath into and push a ball up a tube to increase lung capacity. Unfortunately, I threw it away. Would like to get another. Maybe thru oncolgist's office??? Hospitalization was few years ago and not cancer related but lung thingy (like my continued scientific wordage?) was used for all patients who had anthesthesia.
    Also relate to "sitting duck" feeling. I, like you, worked hard, mentally and spiritually, during treatment. Now it is as if I am sitting around waiting for the next batch of "work" to show up. That is why I joined Cancer Survivors Network. Not only to relate to others but to help me keep focused on life now and not what it might or might not be down the road. I fight depression, have dealt with it since early teens but it has gotten worse lately, especially since remission. Go Figure!!! I am on anti-depressants and have been for years. I just went thru changing meds and getting a new doctor for managing meds for depression. Call him the Medicine Man, not to his face but when I remind myself of an appointment I tell myself I have an appt with Medicine Man. There are always new meds and this new med seems to be helping, but difficult for me to know if fatigue is caused by depression or is side-effect. Just know you are not alone and definitely are not, not I repeat, a hypochondriac. Best of luck, Hestia
  • mcarva
    mcarva Member Posts: 17
    #15
    judyy said:

    holding on to hope
    Hello Everyone,
    It is great to know that others are feeling the same way as I That sounds strange, you know what I mean ha. I have DLCBL stage IV. The lymphoma is in my bone marrow in my left hip.
    I completed my treatments on April 29. no remission unfortunatly. But everything is smaller. I am having a BMB this Friday. I hate it and it is making me sick just knowing it is coming.
    Anyway, I two find it so hard after treatment I thought it was because I did not get remission, but I see that it is just hard. I have the same fear and dread and am wishing I was back on the Chemo. at least I was doing something then Now I am just waiting. !!
    My husband died in 2004 so it is just me and my children who are grown and married. I so wish for a spouse. I am very blessed and am feeling better that I have in a long while but there is always that darn but out there.
    Mary Ann I know what you mean about little things, I am absolutly in love with trees now. I always like them but I am just amazed by there beauty now. It is a crazy world we live in.. But still I want out of it so badly. I wish this was a dream. I am also falling apart at this point always on the verge of tears. maybe I shoud try some therpy. I really did not think it would help because reality can not be changed. You all seem to feel it helps so I will try. Did you go to someone who works with cancer patients or just anyone?

    Blessings to all
    Judy

    Holding onto hope
    Hi Judy,

    I'm sorry what you are going through, but the good news is that you have responded to your treatments. I want to wish you the best of luck with your BMB and please let us know how you are doing. As much as we didn't like to go through treatments, yes, we were actively doing something to "fix" the problem. And even if the problem got fixed, after treatment, there we were hoping it would not "break" again. You are correct that reality cannot be changed. However, what we can change is how we think about a situation. To quote Dr. Wayne Dyer "when you change the way you look at things, the things you look at change." I read a lot of his books and also watch him on public television. His writings do help me. As far as therapy is concerned, I am a firm believer in it as long as you find a therapist that you have a good rapport with. Since I have a long history of anxiety, I have seen a number of therapists. However, now that my anxiety has been taken to a new level because of the cancer, I will be seeing a psychiatrist whose speciality is with oncology patients. My appointment is in a couple of weeks. She works at the hospital where I was treated. Although I am married, my husband does not fully understand what I am going through. It is comforting to be able to relate to others who know exactly what you are talking about. These boards are a wonderful place to be understood, express our fears and anxieties, gather information, and draw on each other's strength and support. Yes, Judy, trees are beautiful. Life is beautiful. Hard at times, not fair at times, disappointing at times, but it also holds so many precious and wonderful moments. Good luck.
    Mary Ann
  • mcarva
    mcarva Member Posts: 17
    #16
    Dee1217 said:

    No, your not alone
    I too find it really hard to be a survivor. Some think now that treatment is done and my hair is back that I'm fine. When reality is, I'm not. My joints hurt every day, I am now single so life is totally different for me. I dread everytime I have to call my pcp because they don't want to treat me because I've had cancer and oncologist don't want to see me cause I'm not "in treatment" anymore. I get very tired of feeling like a yo-yo.

    Feeling like a yo-yo
    Hi Dee1217,

    I'm reading your post and need your help in understanding something that you wrote. You said your pcp won't treat you because you've had cancer and your oncologist doesn't want to see you because you are not in treatment. Does that mean if you are feeling a symptom or just not feeling well and call them, you are being turned away? I don't understand this. Because you've had cancer, depending on the symptom you are complaining about, either your pcp or oncologist should be all the more vigilent and give you the time you need to address it and either ease your mind or give you an action plan for whatever is bothering you. Have you addressed any of this with your doctors? You've been through enough, the last thing you need now is to feel like you are not being listened to. Please let us know how things are going.
    Mary Ann
  • mcarva
    mcarva Member Posts: 17
    #17
    Hestia said:

    I totally understand the
    I totally understand the shortness of breath. I get that and it is very scary to me. It often happens early AM when I am just waking up, in fact, sometimes it wakes me up. I can't get a deep breath. One of the things I have to do is force myself to calm down, to relax, yeah, right, relax while trying to breathe. The other thing I do is take as deep a breath as I can and hold to count of five. I draw in air thru mouth, let out thru nose. I try to remember to do this off and on during the day, to build up lung capacity. I finished chemo and radiation 4/22/09 and still have residual side effects, like the breathing issue, fatigue and food tastes funny (that is not a scientific description, but you know what I mean!!).
    There is a small plastic "thing" I was given in hospital to breath into and push a ball up a tube to increase lung capacity. Unfortunately, I threw it away. Would like to get another. Maybe thru oncolgist's office??? Hospitalization was few years ago and not cancer related but lung thingy (like my continued scientific wordage?) was used for all patients who had anthesthesia.
    Also relate to "sitting duck" feeling. I, like you, worked hard, mentally and spiritually, during treatment. Now it is as if I am sitting around waiting for the next batch of "work" to show up. That is why I joined Cancer Survivors Network. Not only to relate to others but to help me keep focused on life now and not what it might or might not be down the road. I fight depression, have dealt with it since early teens but it has gotten worse lately, especially since remission. Go Figure!!! I am on anti-depressants and have been for years. I just went thru changing meds and getting a new doctor for managing meds for depression. Call him the Medicine Man, not to his face but when I remind myself of an appointment I tell myself I have an appt with Medicine Man. There are always new meds and this new med seems to be helping, but difficult for me to know if fatigue is caused by depression or is side-effect. Just know you are not alone and definitely are not, not I repeat, a hypochondriac. Best of luck, Hestia

    Survivorship
    Hi Hestia,
    I can really relate to what you say in your post, there are so many similarities in the way we are feeling. I appreciate your suggestion for the breathing exercise, I just tried it a few times and will try to remember to do it on a daily basis. Can't forget to say congratulations on finishing your treatment. What was your diagnosis? I didn't have radiation and I'm wondering if that accounts for the reason food does not taste the same to you. I do take an anti-anxiety medication but I am going to see an oncology psychiatrist and will see what she may recommend for my anxiety and hopefully get more suggestions on how to cope with this uncertainty. Fatigue can very much be caused by depression as well as being a side effect of a medication. And also, don't forget you are recently out of treatment and the fatigue could be resulting from that too. I find myself getting very tired when I am having one of those days when I obsess over every ache and pain and keep my thoughts focused on "is it back?" Then I start obsessing over the tiredness and think that maybe it is coming back and it becomes a vicious cycle. I know I need to get back to that place I was in when I was having treatment where I read inspirational material, kept my mind focused on the positives and really believed this was not going to get me. Period. One step at a time and it really helps to receive support from others who understand. Best of luck.
    Mary Ann
  • judyy
    judyy Member Posts: 19
    #18
    mcarva said:

    Holding onto hope
    Hi Judy,

    I'm sorry what you are going through, but the good news is that you have responded to your treatments. I want to wish you the best of luck with your BMB and please let us know how you are doing. As much as we didn't like to go through treatments, yes, we were actively doing something to "fix" the problem. And even if the problem got fixed, after treatment, there we were hoping it would not "break" again. You are correct that reality cannot be changed. However, what we can change is how we think about a situation. To quote Dr. Wayne Dyer "when you change the way you look at things, the things you look at change." I read a lot of his books and also watch him on public television. His writings do help me. As far as therapy is concerned, I am a firm believer in it as long as you find a therapist that you have a good rapport with. Since I have a long history of anxiety, I have seen a number of therapists. However, now that my anxiety has been taken to a new level because of the cancer, I will be seeing a psychiatrist whose speciality is with oncology patients. My appointment is in a couple of weeks. She works at the hospital where I was treated. Although I am married, my husband does not fully understand what I am going through. It is comforting to be able to relate to others who know exactly what you are talking about. These boards are a wonderful place to be understood, express our fears and anxieties, gather information, and draw on each other's strength and support. Yes, Judy, trees are beautiful. Life is beautiful. Hard at times, not fair at times, disappointing at times, but it also holds so many precious and wonderful moments. Good luck.
    Mary Ann

    Still hoping
    Hi MaryAnn
    Thanks for your post. I will look at Dr Dyer's books. I have started a little yoga. the breathing is helping. I just can't get up and down with any speed LOL

    I had my BMB yesterday . It was not too bad. Although I told my doctor I was going to the Mayo Clinic next time because they will sedate you. She just laughed. We are in Texas so that would be a lot of trouble ! She does a really nice job of it But boy the first doctor I had well-
    I can still remember the pain!!!!! I get my results next Thursday. fingers crossed.

    I am feeling pretty good today Still so tired but my HGB is 10.8 which is so high for me.
    I hope you are well and enjoying today. It is very hot here close to 100 I went out earlier came back in Maybe later around seven I can go be outside.It is very nice to have people who understand It is impossible to understand isn't it. Especially when you are not getting treatment. Everyone thinks you are fine !!! and back to normal which I don't think you can be again I can't imagine being so sure of things again. I guess I will close I feel like I am rambling My chemo brain is still alive and well lol

    Judy




    I
  • Hestia
    Hestia Member Posts: 26
    #19
    mcarva said:

    Survivorship
    Hi Hestia,
    I can really relate to what you say in your post, there are so many similarities in the way we are feeling. I appreciate your suggestion for the breathing exercise, I just tried it a few times and will try to remember to do it on a daily basis. Can't forget to say congratulations on finishing your treatment. What was your diagnosis? I didn't have radiation and I'm wondering if that accounts for the reason food does not taste the same to you. I do take an anti-anxiety medication but I am going to see an oncology psychiatrist and will see what she may recommend for my anxiety and hopefully get more suggestions on how to cope with this uncertainty. Fatigue can very much be caused by depression as well as being a side effect of a medication. And also, don't forget you are recently out of treatment and the fatigue could be resulting from that too. I find myself getting very tired when I am having one of those days when I obsess over every ache and pain and keep my thoughts focused on "is it back?" Then I start obsessing over the tiredness and think that maybe it is coming back and it becomes a vicious cycle. I know I need to get back to that place I was in when I was having treatment where I read inspirational material, kept my mind focused on the positives and really believed this was not going to get me. Period. One step at a time and it really helps to receive support from others who understand. Best of luck.
    Mary Ann

    mcarva
    Hi mcarva
    Sure does help to receive support from others and also to know that we often go thru the same symptoms and therefore I am not crazy, or then again, maybe we are all crazy!!! On Saturday I went about 50 miles south of where I live to a huge Flea Market. I went with two friends, it was my turn to drive but was so tired and my very bones ached so much I had one of my friends drive my car. The market is huge and we separated and said we'd meet in 2 hours. I made about an hour and each step felt like my last (sometimes I tend to exaggerate, just a bit). Anyway I finally went to the gate where we decided to meet and 1 and 15 minutes early. Now, here is the chemo brain part. The next morning when I got up (I live alone except for my main caretaker, my 17 year old Jack Russell) I was so disgusted at having my day at the flea market spoiled by aches and pains, I got in the car, drove the 50 miles,re-did the flea market (spent another $70), stopped for grocery shopping on way home and came home and fell across the bed for a couple of hours. But I "erased" the bad day at the flea market. Can you relate to that experience at all? Maybe it would be better if you didn't, cause I sure can't go along repeating experiences that don't suit me. Sure never felt that way before.
    I had NHL, diagnosed in Oct 09, radiation, then chemo cause cancer discovered due to spontaneous break of right arm and break could not be treated during radiation and chemo. Had to heal on its' own.. Am now in remission, next PET early August. Never thought remission would give me so much trouble, like, it's over for now, let's get on with life. Whoops, am too tired, food turns my stomach (Oh no, am I pregnant - don't think so since I'm 73 years old) well, if I'm 73 am I too old for cure? No, of course not, why do I doubt everything?

    Went to Moffit Cancer Ctr in Tampa, first they said whole shoulder needed replacing, now they stay bone healing looks strong enough to avoid replacement. Am in physical therapy now for mobility and strenthening of arm. Arm was held against my side since Oct till PT in late May started. Have some mobility and strength back; but can't lift arm above waist level and was told probably won't get full use back. My very favorite thing is to walk in pool (because of post-polio legs are not too strong), but I can walk in pool. About 11 years ago I planted Chinese bamboo at corner of pool cage and have great shade with bamboo but mostly love sound bamboo makes when wind, no matter how slight, blows. The sound is musical to me and very relaxing.
    I had BMB, and bone biospy. I will NEVER understand doctors attitude that they don't give pain meds for those procedures. I think each and every one of docs should have procedures done once a month until they get the picture. I asked why and was told "They don't like to overuse pain meds." DUH, who is "they." The doctors????? Personally I was not too concerned about "overusing" pain meds. With the broken bone in arm and shoulder I had enough pain to share with each and every doctor. I did take care of myself to some extent. I had 5 mg percocet, and took 1 when got to hospital and one a few hours later when doctor finally showed up. Doctor scheduled didn't show and the hospital staff scrambled to find another. Good guy, he didn't want to continue after he got the bone, didn't want to go futher for marrow, but I told him I was not going thru this again in the next couple of days, to go for it. He said I was sure a tough ole woman, didn't tell him I had taken care of my own pain meds.
    Have to end this and write out bills (UGH) Have a good day, take deep breathes and search out the positive in your life and enjoy.
    Hestia
  • judyy
    judyy Member Posts: 19
    #20
    Hestia said:

    mcarva
    Hi mcarva
    Sure does help to receive support from others and also to know that we often go thru the same symptoms and therefore I am not crazy, or then again, maybe we are all crazy!!! On Saturday I went about 50 miles south of where I live to a huge Flea Market. I went with two friends, it was my turn to drive but was so tired and my very bones ached so much I had one of my friends drive my car. The market is huge and we separated and said we'd meet in 2 hours. I made about an hour and each step felt like my last (sometimes I tend to exaggerate, just a bit). Anyway I finally went to the gate where we decided to meet and 1 and 15 minutes early. Now, here is the chemo brain part. The next morning when I got up (I live alone except for my main caretaker, my 17 year old Jack Russell) I was so disgusted at having my day at the flea market spoiled by aches and pains, I got in the car, drove the 50 miles,re-did the flea market (spent another $70), stopped for grocery shopping on way home and came home and fell across the bed for a couple of hours. But I "erased" the bad day at the flea market. Can you relate to that experience at all? Maybe it would be better if you didn't, cause I sure can't go along repeating experiences that don't suit me. Sure never felt that way before.
    I had NHL, diagnosed in Oct 09, radiation, then chemo cause cancer discovered due to spontaneous break of right arm and break could not be treated during radiation and chemo. Had to heal on its' own.. Am now in remission, next PET early August. Never thought remission would give me so much trouble, like, it's over for now, let's get on with life. Whoops, am too tired, food turns my stomach (Oh no, am I pregnant - don't think so since I'm 73 years old) well, if I'm 73 am I too old for cure? No, of course not, why do I doubt everything?

    Went to Moffit Cancer Ctr in Tampa, first they said whole shoulder needed replacing, now they stay bone healing looks strong enough to avoid replacement. Am in physical therapy now for mobility and strenthening of arm. Arm was held against my side since Oct till PT in late May started. Have some mobility and strength back; but can't lift arm above waist level and was told probably won't get full use back. My very favorite thing is to walk in pool (because of post-polio legs are not too strong), but I can walk in pool. About 11 years ago I planted Chinese bamboo at corner of pool cage and have great shade with bamboo but mostly love sound bamboo makes when wind, no matter how slight, blows. The sound is musical to me and very relaxing.
    I had BMB, and bone biospy. I will NEVER understand doctors attitude that they don't give pain meds for those procedures. I think each and every one of docs should have procedures done once a month until they get the picture. I asked why and was told "They don't like to overuse pain meds." DUH, who is "they." The doctors????? Personally I was not too concerned about "overusing" pain meds. With the broken bone in arm and shoulder I had enough pain to share with each and every doctor. I did take care of myself to some extent. I had 5 mg percocet, and took 1 when got to hospital and one a few hours later when doctor finally showed up. Doctor scheduled didn't show and the hospital staff scrambled to find another. Good guy, he didn't want to continue after he got the bone, didn't want to go futher for marrow, but I told him I was not going thru this again in the next couple of days, to go for it. He said I was sure a tough ole woman, didn't tell him I had taken care of my own pain meds.
    Have to end this and write out bills (UGH) Have a good day, take deep breathes and search out the positive in your life and enjoy.
    Hestia

    Hestia

    Hi
    Good job on the flea market You are a "tough woman" lol I am going to the store in a bit and I hate it It just wears me out and sometimes yes every step does feel like my last!!!!
    My legs hurt I can not always breath well. But I need to go. I like having choices to eat even though it seems I can not cook anything that taste half way decent ! I am not sure why that is. I made a blackberry cobbler yesterday and it and my stomach were not happy together.

    I had a BMB Friday, It was not so bad my Doctor has a great way about doing them. It was not that painful. I took a Lorazapam before
    (my friend) and then there were the 3 shot to numb the tissue. She had to pull 3 times and change the needle on the last pull and it seemed getting the bone piece was easier this time. I was proud of myself not crying and no sound come out of me. Maybe now at 64 I am a big girl. I would just as soon not do that again . lol I guess I will see this thursday how big I am when she gives me the findings of the BMB. I am feeling so good these last days It is almost like not having cancer. What do you suppose that is has the chemo brain finally taking over?
    The deep breathing does help doesn't it? When do you find out about your biopsies? Good luck! My thoughts and prayers are with you and everyone. This is just so darn hard.
    Everyone have a great monday It is hot here but maybe rain. We are praying for rain.

    Judy
  • gagirl08
    gagirl08 Member Posts: 15
    #21
    I'm in the club too
    I had stage 4 nonhodgkins (dlbcl) and have been in remission just over two years. I am a very positive person with a strong faith and sailed right through my treatment with no emotional problems. Afterwards was when I began to feel anxious about the future. I had moved three times in a year and without a support system in place it is questionable an STC would be done if I relapsed. I finally talked with a social work trained in counseling. She said this was perfectly normal and that helped some but what really changed me were other things that happened (two surgeries and a fourth move!). I then met a young man half my age with the same cancer...and he has just passed away. Why am I here instead of him?... Only God knows that.
    I have begun to inderstand that nobody knows what the future holds, not even people without cancer. We all have to roll with the punches and realize that, even though bad things do happen to good people, there are still blessings in each day for us if we look for them. Life may be different than before and ,yes, there will be down days...but now I take it one day at a time and enjoy each day as much as possible. One huge help is to talk with others who have been through this and understand these feelings. So remember we are here to listen ,we understand, and most importantly, reach out to others. When you help others, your own problems seem to grow smaller. Take care friend.

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