Over Freakin Whelmed, AGAIN.

blueroses
blueroses Member Posts: 524
edited March 2014 in Emotional Support #1
Not going to go into the whys of why I am so overwhelmed YET AGAIN, most of you have read my woes of a lodged kidney stone they want to drag out and other medical surgeries and procedures they are threatening to do. One of the confusing aspects of my situation is that because I have had too much medical intervention in my 20 years since diagnosis and so because of that I have become a super Wuss, unable to do even dentistry without being knocked out. Now that there are several procedures I can't keep getting knocked out for each of them so how to choose? I don't know how it happened but it has just all piled up at once. Now on top of each one of these prospective assaults I am dealing with being overwhelmed as well - which as most of you know is an assault all of its own. I am frozen. Can't seem to make one decision that sits right before second guessing myself. Cancelled another specialist's appointment this morning because of heart arythmias I was having but was relieved to not have to start yet something else surgical - which it could well have been. One thing after another and none go away completely, traces are left - large and small of each and everyone along the way. I know you all know, all too well, what I am talking about. Luckily none of mine, thus far, are life threatening situations but the overwhelming nature of it all is just getting to me. Hugs. Blueroses.
«134

Comments

  • Pnktopaz10
    Pnktopaz10 Member Posts: 56
    Blueroses
    I am so sorry that you are overwhelmed. Is there some way you can focus on just one thing~to make things more manageable in your life? I wish that I could give you a hug! Vent all that you want we all love you and are pulling for you. Pnktopaz10
  • blueroses
    blueroses Member Posts: 524

    Blueroses
    I am so sorry that you are overwhelmed. Is there some way you can focus on just one thing~to make things more manageable in your life? I wish that I could give you a hug! Vent all that you want we all love you and are pulling for you. Pnktopaz10

    Thanks Pink
    Oh well we all get to this point at some time or another. I don't know what to focus on first as there are common decisions that have to be made like anesthesia and all, different timetables of specialists - all kinds of things. But I am going to make a list tomorrow of everything that has to be done and it has to start with my cardiologist so hopefully I can get in to see him asap but that's part of the problem, getting to see specialists as you need them in the right order. Maybe putting it all down on paper will make things clearer. Haven't been feeling that well today so will tackle that tomorrow. Thanks for your ideas and support. Love, Blueroses.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    This may sound silly, but it's helped me in the past...
    I remember once shortly after my divorce when I was overwhelmed with what seemed like a million different problems and decisions I did not feel equipped to make (i.e., son dislocated knee; friend borrowed my car & wrecked it; well went dry; furnace stopped making heat; on and on; every day something more heaped on the pile!!) This may be silly, but I took a little PostIt note and wrote, in my tiniest handwriting, a list of all of my big overwhelming problems. Somehow, fitting them all on such a tiny little piece of paper made them all seem small. And seeing them all neatly listed made me feel more in control.

    Looking back, comparing what seemed like overwhelming problems at that time with the challenges of fighting for my life that I live with today, I think that maybe my long list of overwhelming problems really DID belong on a tiny scrap of paper, commiserate with their real weightiness in the grand scheme of things. I'm not minimizing your worries, Blue, just suggesting that maybe you can make them seem smaller with my little trick.
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member

    This may sound silly, but it's helped me in the past...
    I remember once shortly after my divorce when I was overwhelmed with what seemed like a million different problems and decisions I did not feel equipped to make (i.e., son dislocated knee; friend borrowed my car & wrecked it; well went dry; furnace stopped making heat; on and on; every day something more heaped on the pile!!) This may be silly, but I took a little PostIt note and wrote, in my tiniest handwriting, a list of all of my big overwhelming problems. Somehow, fitting them all on such a tiny little piece of paper made them all seem small. And seeing them all neatly listed made me feel more in control.

    Looking back, comparing what seemed like overwhelming problems at that time with the challenges of fighting for my life that I live with today, I think that maybe my long list of overwhelming problems really DID belong on a tiny scrap of paper, commiserate with their real weightiness in the grand scheme of things. I'm not minimizing your worries, Blue, just suggesting that maybe you can make them seem smaller with my little trick.

    Nicely worded!
    Actually, anyone who has been bumped in line at radiation so that a five year old can go ahead of him or her knows exactly what you mean!

    I am not five years old, but I was both glad and sad that those five-year olds got to go ahead of me.

    There are, indeed, bigger things than what we see in our mirrors.

    Take care,

    Joe
  • blueroses
    blueroses Member Posts: 524

    This may sound silly, but it's helped me in the past...
    I remember once shortly after my divorce when I was overwhelmed with what seemed like a million different problems and decisions I did not feel equipped to make (i.e., son dislocated knee; friend borrowed my car & wrecked it; well went dry; furnace stopped making heat; on and on; every day something more heaped on the pile!!) This may be silly, but I took a little PostIt note and wrote, in my tiniest handwriting, a list of all of my big overwhelming problems. Somehow, fitting them all on such a tiny little piece of paper made them all seem small. And seeing them all neatly listed made me feel more in control.

    Looking back, comparing what seemed like overwhelming problems at that time with the challenges of fighting for my life that I live with today, I think that maybe my long list of overwhelming problems really DID belong on a tiny scrap of paper, commiserate with their real weightiness in the grand scheme of things. I'm not minimizing your worries, Blue, just suggesting that maybe you can make them seem smaller with my little trick.

    Good one Linda
    Actually that is what I came down to, make a list - and for the very reasons that you mention but I didn't think to make the writing small as you suggest - good suggestion. In comparison to what our lists would have looked like prior to cancer would be interesting indeed. Wouldn't it be amazing to have started lists like that, in general, all through our lives then read them back down the road to see how far we have come? Interesting to think about how those lists would have or would not have developed. Huh. No one can minimize anyone's worries, they are what they are, and to each person - no matter how trivial or minute they are to another, they are what they are to the person experiencing them. I have no idea if that made any sense but so early in the morning I am just thankful to be sitting upright, lol. Thanks for your great idea Linda. Hope this response finds you feeling better than the day before. Blessings, Blueroses.
  • slickwilly
    slickwilly Member Posts: 334 Member
    blueroses said:

    Good one Linda
    Actually that is what I came down to, make a list - and for the very reasons that you mention but I didn't think to make the writing small as you suggest - good suggestion. In comparison to what our lists would have looked like prior to cancer would be interesting indeed. Wouldn't it be amazing to have started lists like that, in general, all through our lives then read them back down the road to see how far we have come? Interesting to think about how those lists would have or would not have developed. Huh. No one can minimize anyone's worries, they are what they are, and to each person - no matter how trivial or minute they are to another, they are what they are to the person experiencing them. I have no idea if that made any sense but so early in the morning I am just thankful to be sitting upright, lol. Thanks for your great idea Linda. Hope this response finds you feeling better than the day before. Blessings, Blueroses.

    Hi Blueroses
    I am sorry about your frustration and I hope things start to let up. And Linda is right. When we look at our past problems things get put into perspective. I force myself to deal with one issue at a time now. Since cancer I don't like the doctors having control of my life. Its something that is easy for us to understand and something they don't think about. But I guess its worse when my pile of problems grows and there is no way to fix it. You do have the options of getting something fixed. Possibly making your life a bit better. And that is a good thing in our world of things that can't be replaced, fixed or treated. Small steps are better than no steps Blue. As I sit here at my computer all I have to do is turn my head and see a large plastic box full of my medical records, insurance forms, disability forms ect. That box of records is like a monster to me that I can't get out of my home. Make your lists today and someday you can put them into a box and forget about them. Bless you Slickwilly
  • blueroses
    blueroses Member Posts: 524

    Hi Blueroses
    I am sorry about your frustration and I hope things start to let up. And Linda is right. When we look at our past problems things get put into perspective. I force myself to deal with one issue at a time now. Since cancer I don't like the doctors having control of my life. Its something that is easy for us to understand and something they don't think about. But I guess its worse when my pile of problems grows and there is no way to fix it. You do have the options of getting something fixed. Possibly making your life a bit better. And that is a good thing in our world of things that can't be replaced, fixed or treated. Small steps are better than no steps Blue. As I sit here at my computer all I have to do is turn my head and see a large plastic box full of my medical records, insurance forms, disability forms ect. That box of records is like a monster to me that I can't get out of my home. Make your lists today and someday you can put them into a box and forget about them. Bless you Slickwilly

    Aww nuts, Slick
    I was just getting into major procrastination about making a list til I read your post here, grrr, now I actually have to do it. lol. Well I did get a couple of things accomplished but procrastinated the main issues so I will do the list now. Sigh. This is where being forgetful would really come in handy. lol. Later Slick. Blueroses
  • green50
    green50 Member Posts: 312
    blueroses said:

    Aww nuts, Slick
    I was just getting into major procrastination about making a list til I read your post here, grrr, now I actually have to do it. lol. Well I did get a couple of things accomplished but procrastinated the main issues so I will do the list now. Sigh. This is where being forgetful would really come in handy. lol. Later Slick. Blueroses

    Better Blue?
    I too get overwhelmed but guess we make that list and take one task or priority at a time. Does the Drs say anything about your waiting on procedures because of your rapid heart? I am lucky that the Drs let me help make decisions on my treatments. They will say if I have had too much or will tell me their opinion then I will say can I use this it seems the best at this time or whatever and Dr says you know your body. And yes tomorrow I will be starting Etoposide and in a couple weeks for the fifth time I will lose my hair. Got a wig and bandanas. I hope your frustration, Blue, is lessoned and things get better for you. A Big Hug for you.
    Yea make that list. I will need one just to remember things LOL
    Prayers and Hugs
    Sandy
  • ashado
    ashado Member Posts: 1
    I can relate.
    dear blueroses,
    I can very much relate and empathize with you. And I'm sorry about your suffering. I frequently feel the same way. I'm a ten-year breast cancer survivor, but I am still on a potent Chemo aromatase -inhibitor drug, Aromasin, that I take daily. Ever since starting
    that drug 4 years ago---it reduces estrogen levels in my body to near sub-human levels (!), ----I have experienced significant unpleasant side-effects, the worst for me being an exacerbation of my already existing problems with severe chronic depression.I'm scatter-brained, disorganized, have trouble getting almost ANYTHING done. However the drug reduces risk of recurrance by 50 % supposedy, ....so my choice is get off of the drug and possibly die, or suffer the debilitating side-effects.

    At my oncologist appointment a few days ago i learned that my hip bone density is "severely" reduced compared to just a year ago, so now they want to start me on I.V. bone builders. I look like a young middle-aged woman, but I have the bones of an 80-yr old---oh yay!

    It seems like everything I have to deal with each day is negative: learning the results of a test, arranging a follow-up appointment or treatment, counting pills, taking pills, filling out forms, feeling over-whelmed by all the paper-work I deal with, unpleasant calls from collection agencies,....etc etc.

    My mother died on Dec. 14th. 2008, my father lives 1000 miles away.

    I have been unemployed for THREE years.!

    I have no health insurance, and cannot obtain it privately---I get refused----and as I said I'm unemployed so I do not get insurance through an employer.

    I've been very depressed for the last few years, so I've alienated and lost a lot of friends; I have no husband or boyfriend, and very few friends. My best female friend was just diagnosed with Acute Myelogenous Leukemia.

    I used to walk daily, and socialize, and go to movies and do things....but over the last few years, I gradually stopped doing those things.

    Job-hunting takes an enormous amount of energy and persistence and I try not to feel dejected and rejected. I used to be a university professor, and my application to be a substitute teacher at the elementary school level was recently rejected (!), with no explanation, and when I called, no explanation was given and I was hung up on ! Ouch!
    To follow up on that with lawyers etc., I don't have the energy for it & it's not worth it for me....I need money, not justice.

    Yet, I can't just collapse into a pile of self-pity and hopelessness---I have to go ahead and deal with all of these pressing issues.

    I am finally going to apply for disability, although I still want to work too...but I understand that obtaining disability takes a while, and can be a difficult undertaking...and the Psychiatric Clinic at which I had a supportive psychiatrist was abruptly CLOSED, on December 30/2008----leaving me and all the other clients scrambling for a new physician. I called and found out that the initial appointment with a new psychiatrist was over $250 !...remember I pay out of pocket. My previous, sympathetic psychiatrist didn't even really make me pay for service.

    I apologize ahead of time for focusing on the negative. And I'm more than familiar with cognitive behavioral therapy techniques like reducing catastrophizing, or modifying the "fortune-telling" of negative outcomes-----but this is my take on all of that right now-----the worst IS happening !..I'm not catastrophizing, or imagining bad outcomes.....I'm living them!

    I AM coping to some degree and making the effort to deal with each high-priority issue: health, finding a new psychiatrist, getting on disability, grieving the loss of my mother, trying to help my elderly father, finding a job, creating a social support network, being more active, exercising, eating right.....but it is ALL just SO MUCH !

    And so it goes,
    wishing you all peace & light,
    ashado.
  • slickwilly
    slickwilly Member Posts: 334 Member
    ashado said:

    I can relate.
    dear blueroses,
    I can very much relate and empathize with you. And I'm sorry about your suffering. I frequently feel the same way. I'm a ten-year breast cancer survivor, but I am still on a potent Chemo aromatase -inhibitor drug, Aromasin, that I take daily. Ever since starting
    that drug 4 years ago---it reduces estrogen levels in my body to near sub-human levels (!), ----I have experienced significant unpleasant side-effects, the worst for me being an exacerbation of my already existing problems with severe chronic depression.I'm scatter-brained, disorganized, have trouble getting almost ANYTHING done. However the drug reduces risk of recurrance by 50 % supposedy, ....so my choice is get off of the drug and possibly die, or suffer the debilitating side-effects.

    At my oncologist appointment a few days ago i learned that my hip bone density is "severely" reduced compared to just a year ago, so now they want to start me on I.V. bone builders. I look like a young middle-aged woman, but I have the bones of an 80-yr old---oh yay!

    It seems like everything I have to deal with each day is negative: learning the results of a test, arranging a follow-up appointment or treatment, counting pills, taking pills, filling out forms, feeling over-whelmed by all the paper-work I deal with, unpleasant calls from collection agencies,....etc etc.

    My mother died on Dec. 14th. 2008, my father lives 1000 miles away.

    I have been unemployed for THREE years.!

    I have no health insurance, and cannot obtain it privately---I get refused----and as I said I'm unemployed so I do not get insurance through an employer.

    I've been very depressed for the last few years, so I've alienated and lost a lot of friends; I have no husband or boyfriend, and very few friends. My best female friend was just diagnosed with Acute Myelogenous Leukemia.

    I used to walk daily, and socialize, and go to movies and do things....but over the last few years, I gradually stopped doing those things.

    Job-hunting takes an enormous amount of energy and persistence and I try not to feel dejected and rejected. I used to be a university professor, and my application to be a substitute teacher at the elementary school level was recently rejected (!), with no explanation, and when I called, no explanation was given and I was hung up on ! Ouch!
    To follow up on that with lawyers etc., I don't have the energy for it & it's not worth it for me....I need money, not justice.

    Yet, I can't just collapse into a pile of self-pity and hopelessness---I have to go ahead and deal with all of these pressing issues.

    I am finally going to apply for disability, although I still want to work too...but I understand that obtaining disability takes a while, and can be a difficult undertaking...and the Psychiatric Clinic at which I had a supportive psychiatrist was abruptly CLOSED, on December 30/2008----leaving me and all the other clients scrambling for a new physician. I called and found out that the initial appointment with a new psychiatrist was over $250 !...remember I pay out of pocket. My previous, sympathetic psychiatrist didn't even really make me pay for service.

    I apologize ahead of time for focusing on the negative. And I'm more than familiar with cognitive behavioral therapy techniques like reducing catastrophizing, or modifying the "fortune-telling" of negative outcomes-----but this is my take on all of that right now-----the worst IS happening !..I'm not catastrophizing, or imagining bad outcomes.....I'm living them!

    I AM coping to some degree and making the effort to deal with each high-priority issue: health, finding a new psychiatrist, getting on disability, grieving the loss of my mother, trying to help my elderly father, finding a job, creating a social support network, being more active, exercising, eating right.....but it is ALL just SO MUCH !

    And so it goes,
    wishing you all peace & light,
    ashado.

    ashado
    ashado. I am Slickwilly and I sometimes come on here and try to make a few people laugh or think of things in a different way. But many of us understand what a long term illness does to a person. The vast pile of problems that cannot be fixed and the stress everytime the telephone rings. The loss of a Psych or Oncologist that we have worked with for many years. Its easy to start living in a bubble with everyone on the outside holding a pin. We all have our breaking point. If you have a doctor that says you are no longer able to work then I would try Social Security Disability. Its not something any of us want to do and it can take 16 months as it did in my case. As the economy falls apart people like my wife with two degrees, including a teaching degree are working other jobs. Michigan is closing schools each week so its frustrating. I doubt you would find many people on here that don't need money. Even with insurance the travel, Co-Pays, special diets, care products ect add up fast. We struggle to hang on to some part of our life that we had before cancer. I am 53 with a 85 year old spine and bones. So I understand waking up each morning in pain. And not wanting to move and cause more pain. Or having people say how great you look when your a complete mess inside. If you would like more information on what I faced with Social Security please feel free to send me an e-mail. I can only pray that something in your life changes for the better. Bless you Slickwilly
  • green50
    green50 Member Posts: 312

    ashado
    ashado. I am Slickwilly and I sometimes come on here and try to make a few people laugh or think of things in a different way. But many of us understand what a long term illness does to a person. The vast pile of problems that cannot be fixed and the stress everytime the telephone rings. The loss of a Psych or Oncologist that we have worked with for many years. Its easy to start living in a bubble with everyone on the outside holding a pin. We all have our breaking point. If you have a doctor that says you are no longer able to work then I would try Social Security Disability. Its not something any of us want to do and it can take 16 months as it did in my case. As the economy falls apart people like my wife with two degrees, including a teaching degree are working other jobs. Michigan is closing schools each week so its frustrating. I doubt you would find many people on here that don't need money. Even with insurance the travel, Co-Pays, special diets, care products ect add up fast. We struggle to hang on to some part of our life that we had before cancer. I am 53 with a 85 year old spine and bones. So I understand waking up each morning in pain. And not wanting to move and cause more pain. Or having people say how great you look when your a complete mess inside. If you would like more information on what I faced with Social Security please feel free to send me an e-mail. I can only pray that something in your life changes for the better. Bless you Slickwilly

    I am on disability
    It did not take me but 2 months to get disability. I had worked having cancer and chemo 5 years until my Dr, now retired, said enough is enough. Got a new Dr. who is fantastic too so I am lucky. I couldn't take off work and get paid because I take chemo a lot and am exhausted only have a couple month breaks any more. Its been 7 years almost, been off work a year and a half on disability and of course medicare won't kick in until the 2 year mark. Heard they are trying to change that for now its Medicaid. The cancer center I go to is great. They sent the board Social Security drs about 2 inch folder on me and I got it. NO its not fun when your 51 and you think you should be working. But I try to help others and give some advice as you slickwilly. I start chemo today after a two month break. I wish I could take everyone's pain and tiredness away. I don't have hardly any pain just fatigue and I can eat with no problems of nausea even when taking chemo at the same time! Well clock is telling me its time to go to the cancer center.
    I pray for all of us the cure is around the corner or something to help make us feel better
    God Bless with Hugs
    Sandy
  • blueroses
    blueroses Member Posts: 524
    green50 said:

    Better Blue?
    I too get overwhelmed but guess we make that list and take one task or priority at a time. Does the Drs say anything about your waiting on procedures because of your rapid heart? I am lucky that the Drs let me help make decisions on my treatments. They will say if I have had too much or will tell me their opinion then I will say can I use this it seems the best at this time or whatever and Dr says you know your body. And yes tomorrow I will be starting Etoposide and in a couple weeks for the fifth time I will lose my hair. Got a wig and bandanas. I hope your frustration, Blue, is lessoned and things get better for you. A Big Hug for you.
    Yea make that list. I will need one just to remember things LOL
    Prayers and Hugs
    Sandy

    Oh no, not better Green, I am expecting swarms of locusts soon
    Sheeesh, keeps on coming - complications. Last night half of my temporary filling that was supposed to last 3 months came off. Sigh. Not sure if I will have to get another one put on before I have my surgery to yank the tooth or not, so frustrating. Yesterday I nearly tripped on a cord but caught myself but if I had fallen I'm sure I would have broken something the way I would have landed. It's like I am afraid to get out of bed in the morning recently. I sure won't be driving any big machinery for awhile til this patch of cwappy luck bugs off, that's for sure. Not that I ever drove or will drive heavy equipment, lol. Sounds like you certainly have your hands full too Green and your issues are so much more invasive and serious than mine - it's just the compilation of all of mine at once and multiply that by the 20 years this has been going on and I have pretty much had it with doctors. Today, just for more fun I got a letter from my doc of 25 years to say they were now charging for all kinds of things that were free here before. The start of the collapse of our free health care I'm sure - oh great. I don't have any warnings when I get sick, that's why I can't work so this should cost me more money that I don't have. Hard to function when you can't seem to cut a break. However, I continue to do things that need to be done around here and until I hear from my cardiologist all the surgeries are on hold so that's one decision made. One break, is that too much to ask? Sigh, oh well. My prayers are with you on your treatments soon, man I lost my hair twice and it was just so hard on me, you must be so sick of it all but you know it will grow back - I know that isnt much consolation right now but just know that we are all there with you, every step of the way, on this discussion board. Hugs, Blueroses.
  • blueroses
    blueroses Member Posts: 524
    ashado said:

    I can relate.
    dear blueroses,
    I can very much relate and empathize with you. And I'm sorry about your suffering. I frequently feel the same way. I'm a ten-year breast cancer survivor, but I am still on a potent Chemo aromatase -inhibitor drug, Aromasin, that I take daily. Ever since starting
    that drug 4 years ago---it reduces estrogen levels in my body to near sub-human levels (!), ----I have experienced significant unpleasant side-effects, the worst for me being an exacerbation of my already existing problems with severe chronic depression.I'm scatter-brained, disorganized, have trouble getting almost ANYTHING done. However the drug reduces risk of recurrance by 50 % supposedy, ....so my choice is get off of the drug and possibly die, or suffer the debilitating side-effects.

    At my oncologist appointment a few days ago i learned that my hip bone density is "severely" reduced compared to just a year ago, so now they want to start me on I.V. bone builders. I look like a young middle-aged woman, but I have the bones of an 80-yr old---oh yay!

    It seems like everything I have to deal with each day is negative: learning the results of a test, arranging a follow-up appointment or treatment, counting pills, taking pills, filling out forms, feeling over-whelmed by all the paper-work I deal with, unpleasant calls from collection agencies,....etc etc.

    My mother died on Dec. 14th. 2008, my father lives 1000 miles away.

    I have been unemployed for THREE years.!

    I have no health insurance, and cannot obtain it privately---I get refused----and as I said I'm unemployed so I do not get insurance through an employer.

    I've been very depressed for the last few years, so I've alienated and lost a lot of friends; I have no husband or boyfriend, and very few friends. My best female friend was just diagnosed with Acute Myelogenous Leukemia.

    I used to walk daily, and socialize, and go to movies and do things....but over the last few years, I gradually stopped doing those things.

    Job-hunting takes an enormous amount of energy and persistence and I try not to feel dejected and rejected. I used to be a university professor, and my application to be a substitute teacher at the elementary school level was recently rejected (!), with no explanation, and when I called, no explanation was given and I was hung up on ! Ouch!
    To follow up on that with lawyers etc., I don't have the energy for it & it's not worth it for me....I need money, not justice.

    Yet, I can't just collapse into a pile of self-pity and hopelessness---I have to go ahead and deal with all of these pressing issues.

    I am finally going to apply for disability, although I still want to work too...but I understand that obtaining disability takes a while, and can be a difficult undertaking...and the Psychiatric Clinic at which I had a supportive psychiatrist was abruptly CLOSED, on December 30/2008----leaving me and all the other clients scrambling for a new physician. I called and found out that the initial appointment with a new psychiatrist was over $250 !...remember I pay out of pocket. My previous, sympathetic psychiatrist didn't even really make me pay for service.

    I apologize ahead of time for focusing on the negative. And I'm more than familiar with cognitive behavioral therapy techniques like reducing catastrophizing, or modifying the "fortune-telling" of negative outcomes-----but this is my take on all of that right now-----the worst IS happening !..I'm not catastrophizing, or imagining bad outcomes.....I'm living them!

    I AM coping to some degree and making the effort to deal with each high-priority issue: health, finding a new psychiatrist, getting on disability, grieving the loss of my mother, trying to help my elderly father, finding a job, creating a social support network, being more active, exercising, eating right.....but it is ALL just SO MUCH !

    And so it goes,
    wishing you all peace & light,
    ashado.

    Ashado, you are not alone
    What a well written posting. You described so many of us in almost the exact same situation after cancer or while dealing with recurrances. I know it doesn't help you to know that in some ways but it does help to validate those who others look at as whining or complaining cause we know better. On this board you don't have to apologize for focusing on the 'negative' because so much of cancer is negative and if anyone goes through it all smiling and joking and never having a negative thought then they are repressing, or at least that is my thoughts on it. I think it's healthy to vent the good, the bad and the ugly of it all and here you aren't judged, or shouldn't be, cause we have all been there, some more so than others but the reactions will be negative at some point in the cancer journey for us all.

    The overwhelming nature of all you mention I deal with as well and you are so right, it seems that phone calls are always only about doctors and appointments and rules we have to live by now, blah blah blah. I too have lost friends along the way and am divorced now, well for almost 7 years actually, and the cancer certainly was part of the reason for the divorce too. To this day he has no idea how it has affected the rest of my life and during the marriage I now see that alot of the stuff he blamed me for was actually transplant related. It truly can be a big mess to a family and to those of us directly suffering from its after effects, as if that isn't enough we have to make the medical community understand as well. Only recently have they admitted that one of my chemo drugs caused my heart damage. Sheeesh.

    Who knew that after treatment for the cancer in many ways that would be just the start of a whole new rest of our lives. Now that there are so many new treatments we are all living longer, and that's great but with the longevity comes many more late effects that possibly no one saw coming.

    What to do about it all? Don't ask me, one day at a time, one foot in front of the other I suppose is all we can do. This site helps enourmously though as you have probably already found out. Keep telling it like it is and I assure you there are many others who can empathize with you as they have been there at one point themselves. All the best in your continuing treatments. Blessings,
    Blueroses.

    P.S. During your treatments did you have any trauma moments that you can identify? Reason I ask that is because I have a real sense that many of us suffer from PTSD from incidents of trauma during treatments, trauma to us like the chemo room memories or other incidents that stay with us and come back to haunt us. I don't think it's widely recognized in cancer patients and for some I am sure it exists. There are some interesting treatments for PTSD like EMDR, you can read about it if you are interested, I had the technique and managed to rid myself of two trauma memories that were bothering me daily - unrelated to the cancer in that case though. Interesting technique.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    blueroses said:

    Ashado, you are not alone
    What a well written posting. You described so many of us in almost the exact same situation after cancer or while dealing with recurrances. I know it doesn't help you to know that in some ways but it does help to validate those who others look at as whining or complaining cause we know better. On this board you don't have to apologize for focusing on the 'negative' because so much of cancer is negative and if anyone goes through it all smiling and joking and never having a negative thought then they are repressing, or at least that is my thoughts on it. I think it's healthy to vent the good, the bad and the ugly of it all and here you aren't judged, or shouldn't be, cause we have all been there, some more so than others but the reactions will be negative at some point in the cancer journey for us all.

    The overwhelming nature of all you mention I deal with as well and you are so right, it seems that phone calls are always only about doctors and appointments and rules we have to live by now, blah blah blah. I too have lost friends along the way and am divorced now, well for almost 7 years actually, and the cancer certainly was part of the reason for the divorce too. To this day he has no idea how it has affected the rest of my life and during the marriage I now see that alot of the stuff he blamed me for was actually transplant related. It truly can be a big mess to a family and to those of us directly suffering from its after effects, as if that isn't enough we have to make the medical community understand as well. Only recently have they admitted that one of my chemo drugs caused my heart damage. Sheeesh.

    Who knew that after treatment for the cancer in many ways that would be just the start of a whole new rest of our lives. Now that there are so many new treatments we are all living longer, and that's great but with the longevity comes many more late effects that possibly no one saw coming.

    What to do about it all? Don't ask me, one day at a time, one foot in front of the other I suppose is all we can do. This site helps enourmously though as you have probably already found out. Keep telling it like it is and I assure you there are many others who can empathize with you as they have been there at one point themselves. All the best in your continuing treatments. Blessings,
    Blueroses.

    P.S. During your treatments did you have any trauma moments that you can identify? Reason I ask that is because I have a real sense that many of us suffer from PTSD from incidents of trauma during treatments, trauma to us like the chemo room memories or other incidents that stay with us and come back to haunt us. I don't think it's widely recognized in cancer patients and for some I am sure it exists. There are some interesting treatments for PTSD like EMDR, you can read about it if you are interested, I had the technique and managed to rid myself of two trauma memories that were bothering me daily - unrelated to the cancer in that case though. Interesting technique.

    Cancer Survivors at Risk for Long-Term Mental Health Issues
    Not sure is this article is still available on this website (great cancer website regardless), but I saved this interesting snippet, since I have NEVER been offered any kind of psychological help as a part of my cancer treatment:

    Cancer Survivors at Greater Risk for Long-Term Mental Health Issues It's not uncommon to associate stress with serious illness, but unfortunately, the stress may not always end when the illness goes away. A new study has found that long-term adult cancer survivors -- people who have lived at least five years beyond their initial diagnosis -- are nearly twice as likely as the general population to experience severe psychological distress. "We hope these findings will raise awareness of the psychosocial needs of long-term cancer survivors and encourage routine psychological screening of these survivors," said lead author Karen Hoffman, MD, a radiation oncologist at the Harvard Radiation Oncology Program at Harvard Medical School. "Quick, low-cost psychological screening tests are available that can and should be performed during clinic visits." Read the full article at:
    http://www.astro.org/PressRoom/NewsReleases/
    2008NewReleases/documents/Hoffman.pdf
  • slickwilly
    slickwilly Member Posts: 334 Member

    Cancer Survivors at Risk for Long-Term Mental Health Issues
    Not sure is this article is still available on this website (great cancer website regardless), but I saved this interesting snippet, since I have NEVER been offered any kind of psychological help as a part of my cancer treatment:

    Cancer Survivors at Greater Risk for Long-Term Mental Health Issues It's not uncommon to associate stress with serious illness, but unfortunately, the stress may not always end when the illness goes away. A new study has found that long-term adult cancer survivors -- people who have lived at least five years beyond their initial diagnosis -- are nearly twice as likely as the general population to experience severe psychological distress. "We hope these findings will raise awareness of the psychosocial needs of long-term cancer survivors and encourage routine psychological screening of these survivors," said lead author Karen Hoffman, MD, a radiation oncologist at the Harvard Radiation Oncology Program at Harvard Medical School. "Quick, low-cost psychological screening tests are available that can and should be performed during clinic visits." Read the full article at:
    http://www.astro.org/PressRoom/NewsReleases/
    2008NewReleases/documents/Hoffman.pdf

    Good post Linda
    Hi Linda. Your picture on the discussion boards is like a bright ray of sunshine. I am sure you have bad days like everyone else, but you rebound with a great positive attitude. So I always enjoy your posts. It still amazes me that the medical community is so slow in learning what most of us have know for years. They are still having debates about chemo and the effects on the brain. They still don't have answers for a bunch of the side effects. And of all things they can't seem to come up with a lotion or something that works for dry skin. I see so many cancer patients with skin that is red, cracking and flaking off and they have tried everything under the sun. Its just another thing that they don't need to be dealing with. I was really upset when the University of Michigan printed their cancer magazine and it stated some doctors thought chemo brain was related to sitting around and being inactive. I think many of us would argue about that idea. I guess a psych can be good for many people but I find that talking to others that have been there is the best thing for me. I am sure some suffer from PTSD. My daughter was at my first chemo treatment when I had a reaction to the CHOP+Rituxin being put into my body too fast. As my throat was closing up fast the nurses called a code on me. I was really not ready to leave this world and found out its quite hard to remain calm when you can't get a breath. It didn't make going to the rest of my treatments any easier and I think my daughter suffered more PTSD from that episode then I did. Bless you and have a good day. Slickwilly
  • Dreamdove
    Dreamdove Member Posts: 175 Member

    Good post Linda
    Hi Linda. Your picture on the discussion boards is like a bright ray of sunshine. I am sure you have bad days like everyone else, but you rebound with a great positive attitude. So I always enjoy your posts. It still amazes me that the medical community is so slow in learning what most of us have know for years. They are still having debates about chemo and the effects on the brain. They still don't have answers for a bunch of the side effects. And of all things they can't seem to come up with a lotion or something that works for dry skin. I see so many cancer patients with skin that is red, cracking and flaking off and they have tried everything under the sun. Its just another thing that they don't need to be dealing with. I was really upset when the University of Michigan printed their cancer magazine and it stated some doctors thought chemo brain was related to sitting around and being inactive. I think many of us would argue about that idea. I guess a psych can be good for many people but I find that talking to others that have been there is the best thing for me. I am sure some suffer from PTSD. My daughter was at my first chemo treatment when I had a reaction to the CHOP+Rituxin being put into my body too fast. As my throat was closing up fast the nurses called a code on me. I was really not ready to leave this world and found out its quite hard to remain calm when you can't get a breath. It didn't make going to the rest of my treatments any easier and I think my daughter suffered more PTSD from that episode then I did. Bless you and have a good day. Slickwilly

    Can't believe anyone would think that, especially a doctor
    I never heard of such a thing as someone thinking chemo-brain is caused by sitting around and being inactive. Sure exercise is good for circulation. But I worked 25 hours a week as a grocery store checker (bagging most of the groceries also) the entire time I went thru chemo plus walked at least 2 miles a day (sometimes 3 or 4 miles) back and forth to work and to the bus for my treatments, checkups, blood tests, and shots. On my days off I walked to the library and errants. I carried heavy groceries for at least a mile several times a week. At home I went up and down 2 flights of stairs (at that time I lived in a townhouse and the bedrooms were upstairs, the laundry machines were in the basement so there were 3 levels) many times per day. I did most of the housework and all of the cooking and laundry for myself and my daughter. When I look back I think, "how did I do all that?" And yet I did have symptoms of chemo-brain, no doubt about it. And still do sometimes, 2 years later.
  • blueroses
    blueroses Member Posts: 524

    Cancer Survivors at Risk for Long-Term Mental Health Issues
    Not sure is this article is still available on this website (great cancer website regardless), but I saved this interesting snippet, since I have NEVER been offered any kind of psychological help as a part of my cancer treatment:

    Cancer Survivors at Greater Risk for Long-Term Mental Health Issues It's not uncommon to associate stress with serious illness, but unfortunately, the stress may not always end when the illness goes away. A new study has found that long-term adult cancer survivors -- people who have lived at least five years beyond their initial diagnosis -- are nearly twice as likely as the general population to experience severe psychological distress. "We hope these findings will raise awareness of the psychosocial needs of long-term cancer survivors and encourage routine psychological screening of these survivors," said lead author Karen Hoffman, MD, a radiation oncologist at the Harvard Radiation Oncology Program at Harvard Medical School. "Quick, low-cost psychological screening tests are available that can and should be performed during clinic visits." Read the full article at:
    http://www.astro.org/PressRoom/NewsReleases/
    2008NewReleases/documents/Hoffman.pdf

    Duh
    Hi Linda, The 'duh' isn't on you it's on the medical community for being so naive as not to think that there will be psychological impacts of our diagnose, long or short term. Good grief why wouldn't a life threatening illness cause a bit of stress and possibly more? It just floors me that things like this that are so obvious are tied up in long term studies and debate. Good freakin grief. It's all about the profession not wanting to be accountable for the downside of cancer treatment. I don't want to sound like a gloomy Gus here but there is another side of cancer as we all know, and that is the side that is darker and needs to be discussed and recognized. I get the feeling that sometimes I come across as a gloomy, negative whiner but in reality I have a very positive attitude in my 20 year journey with cancer. I post alot of 'the other side of cancer' stuff because I think that society as a whole has put a happy face on the illness thereby repressing the side that cancer survivors really need to talk about - openly and without invalidation. Yes, positivity and humour, hope, faith and that 'carry on' attitude are all important but in reality that can't ALWAYS be the way it truly is, all of the time, in a person's journey with the beast. Just makes me so mad that psychological medicine isn't an obvious part of cancer treatment all over the world. Dang, sure wish I had the energy to lead that type of movement but I don't. Oh man, I think my blood pressure just went up 50%. Thanks for mentioning that article though, I will show it to the Memory Disorder Clinic where I have asked to go now for my 'chemo brain', will keep you posted. The other day when my doc asked me how old my daughter was I forgot, and for minutes on end too. Ta da. lol. What you said about long term survivors and the increased risk of psychological issues - Helloooooo. lol.
    Again Linda, this isn't aimed at you, just your posting on what is a very serious area of cancer care that is far from serving cancer patients. I think I'm done now. Whew. lol. Blessings Linda, Blueroses.
  • Pnktopaz10
    Pnktopaz10 Member Posts: 56
    blueroses said:

    Duh
    Hi Linda, The 'duh' isn't on you it's on the medical community for being so naive as not to think that there will be psychological impacts of our diagnose, long or short term. Good grief why wouldn't a life threatening illness cause a bit of stress and possibly more? It just floors me that things like this that are so obvious are tied up in long term studies and debate. Good freakin grief. It's all about the profession not wanting to be accountable for the downside of cancer treatment. I don't want to sound like a gloomy Gus here but there is another side of cancer as we all know, and that is the side that is darker and needs to be discussed and recognized. I get the feeling that sometimes I come across as a gloomy, negative whiner but in reality I have a very positive attitude in my 20 year journey with cancer. I post alot of 'the other side of cancer' stuff because I think that society as a whole has put a happy face on the illness thereby repressing the side that cancer survivors really need to talk about - openly and without invalidation. Yes, positivity and humour, hope, faith and that 'carry on' attitude are all important but in reality that can't ALWAYS be the way it truly is, all of the time, in a person's journey with the beast. Just makes me so mad that psychological medicine isn't an obvious part of cancer treatment all over the world. Dang, sure wish I had the energy to lead that type of movement but I don't. Oh man, I think my blood pressure just went up 50%. Thanks for mentioning that article though, I will show it to the Memory Disorder Clinic where I have asked to go now for my 'chemo brain', will keep you posted. The other day when my doc asked me how old my daughter was I forgot, and for minutes on end too. Ta da. lol. What you said about long term survivors and the increased risk of psychological issues - Helloooooo. lol.
    Again Linda, this isn't aimed at you, just your posting on what is a very serious area of cancer care that is far from serving cancer patients. I think I'm done now. Whew. lol. Blessings Linda, Blueroses.

    Chemo Brain
    I have an excellent oncologist who understands chemo brain~in fact she told me I had it~ but she does dismiss it. After reading the posts I think that she dismisses it because she does not have any answers about what to do about it. I had no idea about the negative impact of chemo and radiation. I do sort of remember someone telling me a few things but at the time it meant nothing. However, I find that there are positive benefits to chemo brain. When my hubby and I get into a dispute about something~I forget about it quickly and sometimes do not remember it for a few days. LOL. Reading books has always been one of my joys and now I can read books I read before because I do not remember them! Think of the money I am saving! I can no longer multi task which leads to many funny situations around the house~where I find things that I have started to do and never finished. Life is simpler since I retired and it took having cancer to slow me down and put things in the proper perspective. I am grateful for that. The other side effects can be dealt with~sometimes frustrating sometimes rewarding~like the weight I lost~. I do think that the medical community could be more responsive to cancer survivors and the side effects. To that end this is my 4th year o being a team captain in our Relay for Life. I just wish I could do more.
    Hugs to all Pnktopaz10
  • tasha_111
    tasha_111 Member Posts: 2,072

    Chemo Brain
    I have an excellent oncologist who understands chemo brain~in fact she told me I had it~ but she does dismiss it. After reading the posts I think that she dismisses it because she does not have any answers about what to do about it. I had no idea about the negative impact of chemo and radiation. I do sort of remember someone telling me a few things but at the time it meant nothing. However, I find that there are positive benefits to chemo brain. When my hubby and I get into a dispute about something~I forget about it quickly and sometimes do not remember it for a few days. LOL. Reading books has always been one of my joys and now I can read books I read before because I do not remember them! Think of the money I am saving! I can no longer multi task which leads to many funny situations around the house~where I find things that I have started to do and never finished. Life is simpler since I retired and it took having cancer to slow me down and put things in the proper perspective. I am grateful for that. The other side effects can be dealt with~sometimes frustrating sometimes rewarding~like the weight I lost~. I do think that the medical community could be more responsive to cancer survivors and the side effects. To that end this is my 4th year o being a team captain in our Relay for Life. I just wish I could do more.
    Hugs to all Pnktopaz10

    Chemo Brain
    Hi. Not one of my supposed health care team mentioned chemo brain to me before treatment, and no one has acknowledged it since. If it hadn't been for my Peer Support Lady who talks to me on the phone once a fortnight, I would have seriously considered the fact that I was deranged. I's nice to meet others here who have had some experience of this and actually admit it DOES exist!.

    Thanks J xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    tasha_111 said:

    Chemo Brain
    Hi. Not one of my supposed health care team mentioned chemo brain to me before treatment, and no one has acknowledged it since. If it hadn't been for my Peer Support Lady who talks to me on the phone once a fortnight, I would have seriously considered the fact that I was deranged. I's nice to meet others here who have had some experience of this and actually admit it DOES exist!.

    Thanks J xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

    You asked about treatment-related trauma...
    I was definitely traumatized by my hospital experience following my debulking surgery. The night after my surgery I was left all night with a call-button on the floor that I could not reach, and a non-functioning catheter, unable to get out of bed because I had 27 staples holding together a fresh 9" belly incision. (They'd check my vitals, make a note on my chart that the catheter didn't seem to be working, then go, as I drifted in and out from my anesthesia.) I stayed one more night, unhooked from my IV and my catheter removed at my insistance, in a CHAIR instead of the bed because I didn't TRUST anyone to come help me go pee and wanted to be personally mobile. Two nights of silent weeping and then I checked myself out of there with no bowel function, projectile vomiting all the way down the hall and out the hospital doors to my poor husband's car.

    I have internal vaginal radiation coming up soon in my treatment regime. I don't know any woman who has had that degradation and humiliation who wasn't traumatized by it and who doesn't weep at the memory.

    And I've witnessed the trauma of people who always get very sick from their chemo, crying as the bags are hung for yet another round.

    Cancer treatment is no walk in the park. It's do-able, but we'd all be fools if our 'game face' was real 24/7. Just knowing that you may very well die, facing that, is pretty darn traumatizing, even though of course people without cancer will also die. But most don't look death in the face like we do, accepting but hopeful.