One constipation idea...

This info is just in case somebody else out there is having a similar problem. I realize I may be only a tiny percentage of patients, but this discovery changed my chemo life completely.

Like everyone I approached chemo determined to do exactly as I was told. I love my Oncologist and totally trust his care. Like most, prior to my first chemo, I was given several scrips for meds to help with nausea side effects. Being a good patient and trying to stay out front of that side effect, I took the meds just as directed. 

From day 2 after each of the first three infusions, I immediately began to be constipated to a degree that seemingly no laxative could fix. The symptoms were confusing. I erred in interpreting them partially as nausea. Hence, I continued the meds. 

I have always been sensitive to antacids but because I so rarely needed to use them I barely kept track. One of my nausea meds was a strong Pepcid type drug  that I took each night at bedtime. I spoke to my doctor and he said its use was entirely up to me.

So I stopped. Low and behold, after my fourth infusion, laxatives were able to handle the Pepcid injection I am given each treatment, then without the nightly pills and with nothing more than prune juice each day I have absolutely no constipation. I feel wonderful and am very fortunate to find I am one who actually has no nausea after R-CHOP.

My situation might be fairly unique, but if my story can help someone else out there  like me, I had to tell my tale.  I would go 5-7 miserable days before managing any bowel movement. That is completely gone and post-chemo is great compared to the first three.

Best wishes everyone and if constipation is a big problem, maybe this approach might be worth a try.

update...6th chemo on Feb 15th then a PET Scan in 30 days to see how I made out!

 

«1

Comments

  • Simon24
    Simon24 Member Posts: 45
    Thanks for sharing

    Hi Birder,

        I'm glad you solved the constipation problem and shared your solution.  Someone else may benefit from your experience.  My husband finished his R-CHOP in November and never had nausea with R-CHOP, but boy the constipation was a real problem. He needed a prescription for Lactulose which helped somewhat. It was an ongoing problem toward the last few chemo cycles.  Shortly after the chemo was over he was back to normal.  Ironically, when he was due to start radiation the doctors advised that he might experience diarrhea.  He never did, but we were prepared.

    My husband won't have his PET scan until April because of the radiation treatments he received, but his blood work has been improving. Not perfect, but improving.  We both wish you the very best with your final treatment and hope your PET scan shows NED.                      Simone

    P.S.  We are birders, too.

  • lindary
    lindary Member Posts: 711 Member
    constipation

    I never have had problems with nausea after R-Chop or Rice. Constipation was another matter. I have IBS so bowel issues are well known to me. One of the best pieces of advice I read somewhere was to start taking a laxitive the night before the first chemo. It had taken about 3 days after chemo for it to kick in the first time. By starting the laxitive before chemo the bowels were working by the day after chemo.

     

  • Sal0101
    Sal0101 Member Posts: 136 Member
    Chemo #6

    Hi Birder!

    Glad to hear you found the trick!  i just finished my 6th chemo and last methotrexate last week.  PET on February 18th. Keeping my hopes up for both of us, along with everyone else fighting the fight.  I can't say I'm not scared though! 

    Sharon

     

     

  • Birder
    Birder Member Posts: 29
    lindary said:

    constipation

    I never have had problems with nausea after R-Chop or Rice. Constipation was another matter. I have IBS so bowel issues are well known to me. One of the best pieces of advice I read somewhere was to start taking a laxitive the night before the first chemo. It had taken about 3 days after chemo for it to kick in the first time. By starting the laxitive before chemo the bowels were working by the day after chemo.

     

    Me too!

    Hi lindary,

    Same with me! I just toss back a dose of Phillips Milk of Magnesia the night before. Then-on, it may not be needed, but I take a big long swig of prune juice each night and all goes great.  The constipation was misery...never again!

    Best wishes to you!

    Birder

  • Birder
    Birder Member Posts: 29
    Sal0101 said:

    Chemo #6

    Hi Birder!

    Glad to hear you found the trick!  i just finished my 6th chemo and last methotrexate last week.  PET on February 18th. Keeping my hopes up for both of us, along with everyone else fighting the fight.  I can't say I'm not scared though! 

    Sharon

     

     

    Thanks

    Hi Sharon,

    We are all in this thing together! Great  to hear your thoughts and I know you are kicking cancer's ****!

    Birder

  • Birder
    Birder Member Posts: 29
    Simon24 said:

    Thanks for sharing

    Hi Birder,

        I'm glad you solved the constipation problem and shared your solution.  Someone else may benefit from your experience.  My husband finished his R-CHOP in November and never had nausea with R-CHOP, but boy the constipation was a real problem. He needed a prescription for Lactulose which helped somewhat. It was an ongoing problem toward the last few chemo cycles.  Shortly after the chemo was over he was back to normal.  Ironically, when he was due to start radiation the doctors advised that he might experience diarrhea.  He never did, but we were prepared.

    My husband won't have his PET scan until April because of the radiation treatments he received, but his blood work has been improving. Not perfect, but improving.  We both wish you the very best with your final treatment and hope your PET scan shows NED.                      Simone

    P.S.  We are birders, too.

    Hi back to you!

    Hi Simone,

    Thanks for sharing your thoughts and I send my best, best wishes to your husband!

    what state or country do you do your birding?

    Birder

  • Simon24
    Simon24 Member Posts: 45
    Birder said:

    Hi back to you!

    Hi Simone,

    Thanks for sharing your thoughts and I send my best, best wishes to your husband!

    what state or country do you do your birding?

    Birder

    Birding

    Hi Birder,

       We bird wherever we are, but some of our favorite places are Edwin Forsythe NWR in New Jersey, Bombay Hook NWR, DE, Huntington Beach State Park, SC, and just about anywhere in Florida.  Those are just a few. We like to look for ducks in coastal areas and my favorite is the Bufflehead.  They remind me of black and white bathtub ducks.  We have feeders in our yard and love watching the daily visitors.  Right now we have lots of snow so the feeders are super crowded.  Watching the feeders is very entertaining.  We look forward to late April when we put out our hummingbird feeder.  Where do you bird?  Thinking of you and wishing you a very good day.                Simone

  • Simon24 said:

    Birding

    Hi Birder,

       We bird wherever we are, but some of our favorite places are Edwin Forsythe NWR in New Jersey, Bombay Hook NWR, DE, Huntington Beach State Park, SC, and just about anywhere in Florida.  Those are just a few. We like to look for ducks in coastal areas and my favorite is the Bufflehead.  They remind me of black and white bathtub ducks.  We have feeders in our yard and love watching the daily visitors.  Right now we have lots of snow so the feeders are super crowded.  Watching the feeders is very entertaining.  We look forward to late April when we put out our hummingbird feeder.  Where do you bird?  Thinking of you and wishing you a very good day.                Simone

    Buffleheads

    we occasionally have lage flock of buffleheads stopping at our house in the outer banks during their migrations. Love them. I could watch them for hours.

  • Kaniksu
    Kaniksu Member Posts: 54
    I had to chime in on this one...

    For me the issue with the constipation was absolately the worst part of the whole chemo treatment..I did exactly as I was told by My Dr and ended up having to go to the emergency room..It was horrible. All I was doing was eating fruits, veggies,and things high in fiber..colace absolutely did not work for me..What really did work was a tea my daughter gave me called Smooth Move..I like you Birder has extreme stomach problems from all the drugs and the more pills I took were just tearing me up...I seem to have made it through this last treatment ok. My Dr told me I was having PTSD from the ER trip...please,new people be proactive on this.. I too find it ironic that they have told me my radiation in the groin area may just have the opposite effect. I go for my PET on the 15 th and if all clear start radiation. I did read a report from a Dr at NIH who said he always gives one more round of chemo after a clean PET. I am going to mention this to my Dr.  Any of you had this conversation with your Drs?  I did not have night sweats as a symptom of the lymphoma but I sure as heck are having them now..How about any of you?..I think the thing that has surprised me a lot about the whole process is my desire to just isolate, I wouldn't call it depression just a lot of soul searching.. I am so grateful that my husband has been so understanding...I don't know about the rest of you but for the past two months my life has just been home ,chemo and Drs..the chemo kicked my butt like I had not expected..I've learned a lot about myself,and others too....I know now for some people friends and acquaintances that for some they are at a loss on how to deal to deal with a sick friend..I knew it was up to me to try to make them feel comfortable being around me..I also learned the most healing place I can be is by the sound of a rushing winter River in the forest with my dog..it brings me an inner peace and letting me know there is a great spirit full of love and there is no need to have fear.....

  • Simon24
    Simon24 Member Posts: 45
    Kaniksu said:

    I had to chime in on this one...

    For me the issue with the constipation was absolately the worst part of the whole chemo treatment..I did exactly as I was told by My Dr and ended up having to go to the emergency room..It was horrible. All I was doing was eating fruits, veggies,and things high in fiber..colace absolutely did not work for me..What really did work was a tea my daughter gave me called Smooth Move..I like you Birder has extreme stomach problems from all the drugs and the more pills I took were just tearing me up...I seem to have made it through this last treatment ok. My Dr told me I was having PTSD from the ER trip...please,new people be proactive on this.. I too find it ironic that they have told me my radiation in the groin area may just have the opposite effect. I go for my PET on the 15 th and if all clear start radiation. I did read a report from a Dr at NIH who said he always gives one more round of chemo after a clean PET. I am going to mention this to my Dr.  Any of you had this conversation with your Drs?  I did not have night sweats as a symptom of the lymphoma but I sure as heck are having them now..How about any of you?..I think the thing that has surprised me a lot about the whole process is my desire to just isolate, I wouldn't call it depression just a lot of soul searching.. I am so grateful that my husband has been so understanding...I don't know about the rest of you but for the past two months my life has just been home ,chemo and Drs..the chemo kicked my butt like I had not expected..I've learned a lot about myself,and others too....I know now for some people friends and acquaintances that for some they are at a loss on how to deal to deal with a sick friend..I knew it was up to me to try to make them feel comfortable being around me..I also learned the most healing place I can be is by the sound of a rushing winter River in the forest with my dog..it brings me an inner peace and letting me know there is a great spirit full of love and there is no need to have fear.....

    Radiation

    Hi Kaniksu,

       My husband had six rounds of R-CHOP. four methotrexate treatments, and needed 17 rounds of radiation afterwards because he had testicular lymphoma.  He had some severe constipation with chemo, and was warned that he might have diarrhea with radiation.  He had two different types of radiation, beam and proton, during each treatment.  He initially  had a large node near his abdominal aorta, which responded very well to chemo, but because of the initial size concerned the radiologist. She felt he should be treated in the abdominal area as a precaution. He also received proton therapy to the groin area as a precaution.  He sailed through radiation with no side effects until the last two days when he developed some burning in the groin.  It went away after a week.  Through the whole process he used aquaphor ointment two hours after each treatment.  It is very greasy, but it worked well to prevent burns.  He had to be careful to shower it off well before each treatment.  He also used Dove sensitive skin soap.  Others on this site may have other suggestions for ointments and creams you can use to avoid burning from radiation.  I hope you will have a clean PET scan and sail through radiation, too.  Wishing you all the best.                          Simone

     

    Our doctor did not mention an extra round of chemo after a clean PET.  My husband had a PET after chemo round four and will not have another until April.  He did not get much of a break between chemo and the start of radiation and they don't like to give PET scans too soon after radiation.  The doctor is carefully monitoring his blood though. 

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    Simon24 said:

    Radiation

    Hi Kaniksu,

       My husband had six rounds of R-CHOP. four methotrexate treatments, and needed 17 rounds of radiation afterwards because he had testicular lymphoma.  He had some severe constipation with chemo, and was warned that he might have diarrhea with radiation.  He had two different types of radiation, beam and proton, during each treatment.  He initially  had a large node near his abdominal aorta, which responded very well to chemo, but because of the initial size concerned the radiologist. She felt he should be treated in the abdominal area as a precaution. He also received proton therapy to the groin area as a precaution.  He sailed through radiation with no side effects until the last two days when he developed some burning in the groin.  It went away after a week.  Through the whole process he used aquaphor ointment two hours after each treatment.  It is very greasy, but it worked well to prevent burns.  He had to be careful to shower it off well before each treatment.  He also used Dove sensitive skin soap.  Others on this site may have other suggestions for ointments and creams you can use to avoid burning from radiation.  I hope you will have a clean PET scan and sail through radiation, too.  Wishing you all the best.                          Simone

     

    Our doctor did not mention an extra round of chemo after a clean PET.  My husband had a PET after chemo round four and will not have another until April.  He did not get much of a break between chemo and the start of radiation and they don't like to give PET scans too soon after radiation.  The doctor is carefully monitoring his blood though. 

    Pelvic Radiation

    Birder,

    It is a delight to read that you are near the end of treatments. May it all prove curative, with nothing further ever required.

    Simone, I hope your husband gains total remission also. While I never received theraupedic radiation for my prostate cancer, I have learned in studying treatments that the pelvic region is extremely tricky to radiate.  Your radiation staff should be able to recommend effective creams for skin burns/irritation. And there is a testicular cancer board also, although of course testicular cancer is a different entity from lymphoma in the testicles.

    max

     

    .

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    Kaniksu said:

    I had to chime in on this one...

    For me the issue with the constipation was absolately the worst part of the whole chemo treatment..I did exactly as I was told by My Dr and ended up having to go to the emergency room..It was horrible. All I was doing was eating fruits, veggies,and things high in fiber..colace absolutely did not work for me..What really did work was a tea my daughter gave me called Smooth Move..I like you Birder has extreme stomach problems from all the drugs and the more pills I took were just tearing me up...I seem to have made it through this last treatment ok. My Dr told me I was having PTSD from the ER trip...please,new people be proactive on this.. I too find it ironic that they have told me my radiation in the groin area may just have the opposite effect. I go for my PET on the 15 th and if all clear start radiation. I did read a report from a Dr at NIH who said he always gives one more round of chemo after a clean PET. I am going to mention this to my Dr.  Any of you had this conversation with your Drs?  I did not have night sweats as a symptom of the lymphoma but I sure as heck are having them now..How about any of you?..I think the thing that has surprised me a lot about the whole process is my desire to just isolate, I wouldn't call it depression just a lot of soul searching.. I am so grateful that my husband has been so understanding...I don't know about the rest of you but for the past two months my life has just been home ,chemo and Drs..the chemo kicked my butt like I had not expected..I've learned a lot about myself,and others too....I know now for some people friends and acquaintances that for some they are at a loss on how to deal to deal with a sick friend..I knew it was up to me to try to make them feel comfortable being around me..I also learned the most healing place I can be is by the sound of a rushing winter River in the forest with my dog..it brings me an inner peace and letting me know there is a great spirit full of love and there is no need to have fear.....

    Kaniksu

    It is wonderful that you have such a sense of peace. It sounds like you have a very high level of awareness.

    By odd chance, as an undergrad student years ago I took some courses in sociology relating to Death and Dying. It reviewed how societies deal with the terminally ill, which overlaps into the seriously ill also.  It is a very common thing for people to not know how to approach a person or family mmember with cancer or other potentially fatal conditions.  I have noticed many times at social events that people I knew would smile and walk past without speaking. But then, they would privately pull my wife aside and ask her about me....they did not know how to speak to me, but were willing to give her a try.  Almost every time I miss church and she goes without me people stop her and ask about me. They never do this when I am present with her.

    I was dying in ICU decades ago from an auto crash (I went out of the driver's window, and the car rolled over me). The surgeons had all told my relatives to call anyone who wanted to see me again.

    Three women from my office came down together to visit, but I learned later that one, outside ICU, paniced and told the others, "I can't go in and see someone like that."  (I was orange-colored from jaundice, and on a ventillator; my left leg seriously cut up.)  Some people cannot visit a patient in ICU if they know they are seriously mutilated.  She got up the nerve and came in to the unit, and she always marveled that I ever recovered from the state I was in (I heard her tell people that).

    A friend died in Hospice from prostate two years ago.  I was with him till the end, but the same thing:  Many friends could not go to see him. It was too much.  Another friend died of breast cancer last month.  We were in close contact; she asked me a lot of questions.  As she got worse and worse, people were less and less willing to write her online or say anything.  She herself wrote to everyone, "I understand if you cannot deal with me, if it is too much for you to handle.  I understand."  Obviously, she was aware people were "backing off."  I told her, "I do not care how bad it gets, how ugly. I am willing to be here , it does not matter.  It will not bother me."

    She told me that my comment was precious to her, that it was something she valued tremendously.

    Of course we are all hoping to avoid hospice and some of these issues, but they tend to ooccur to any person with serious cancer, even if not considered terminal.  These reactions have occured around me personally many, many times.  One technique that I have found useful is to volunteer information about myself, after asking if they are interested.   I would say 80% of the time they do express interest, and seem to greatly appreciate me breaking the ice.  A few do not want to discuss it, and some people do not want their own situation shared themselves.

    So, it varies a lot. I accept anyone regardless of 'where they are at' in learning about cancer.   Be aware also that most people are pretty ignorant of cancer, with tons of misconceptions.  I have heard of educated people who were afraid that it is contageous !   Another common, but usually unspoken thought that uninformed people have when hearing someone has cancer is to think to themmselves, "How long till he is dead ?"  They often assume a cancer diagnosis is a death sentence; they do not know that cancers are all different, some terminal, some not. 

    I gradually, a little bit at a time, learned after getting over lymphoma in 2010 that my managers and many of my coworkers had assumed that I was terminal, and would never be back.  This, despite the fact that I had told them my disease was treatable, and that chemo was working.  I even saw administrative evidence proving they thought I was "a goner"....there was a paper trail; security clearances had been cancelled, etc.   Of course, the whole time they were saying, "Get well soon ! We hope to have you back as soon as possible !"

    Thank you for your post on this seldom-discussed subject,

    max

  • Rocquie
    Rocquie Member Posts: 858 Member

    Kaniksu

    It is wonderful that you have such a sense of peace. It sounds like you have a very high level of awareness.

    By odd chance, as an undergrad student years ago I took some courses in sociology relating to Death and Dying. It reviewed how societies deal with the terminally ill, which overlaps into the seriously ill also.  It is a very common thing for people to not know how to approach a person or family mmember with cancer or other potentially fatal conditions.  I have noticed many times at social events that people I knew would smile and walk past without speaking. But then, they would privately pull my wife aside and ask her about me....they did not know how to speak to me, but were willing to give her a try.  Almost every time I miss church and she goes without me people stop her and ask about me. They never do this when I am present with her.

    I was dying in ICU decades ago from an auto crash (I went out of the driver's window, and the car rolled over me). The surgeons had all told my relatives to call anyone who wanted to see me again.

    Three women from my office came down together to visit, but I learned later that one, outside ICU, paniced and told the others, "I can't go in and see someone like that."  (I was orange-colored from jaundice, and on a ventillator; my left leg seriously cut up.)  Some people cannot visit a patient in ICU if they know they are seriously mutilated.  She got up the nerve and came in to the unit, and she always marveled that I ever recovered from the state I was in (I heard her tell people that).

    A friend died in Hospice from prostate two years ago.  I was with him till the end, but the same thing:  Many friends could not go to see him. It was too much.  Another friend died of breast cancer last month.  We were in close contact; she asked me a lot of questions.  As she got worse and worse, people were less and less willing to write her online or say anything.  She herself wrote to everyone, "I understand if you cannot deal with me, if it is too much for you to handle.  I understand."  Obviously, she was aware people were "backing off."  I told her, "I do not care how bad it gets, how ugly. I am willing to be here , it does not matter.  It will not bother me."

    She told me that my comment was precious to her, that it was something she valued tremendously.

    Of course we are all hoping to avoid hospice and some of these issues, but they tend to ooccur to any person with serious cancer, even if not considered terminal.  These reactions have occured around me personally many, many times.  One technique that I have found useful is to volunteer information about myself, after asking if they are interested.   I would say 80% of the time they do express interest, and seem to greatly appreciate me breaking the ice.  A few do not want to discuss it, and some people do not want their own situation shared themselves.

    So, it varies a lot. I accept anyone regardless of 'where they are at' in learning about cancer.   Be aware also that most people are pretty ignorant of cancer, with tons of misconceptions.  I have heard of educated people who were afraid that it is contageous !   Another common, but usually unspoken thought that uninformed people have when hearing someone has cancer is to think to themmselves, "How long till he is dead ?"  They often assume a cancer diagnosis is a death sentence; they do not know that cancers are all different, some terminal, some not. 

    I gradually, a little bit at a time, learned after getting over lymphoma in 2010 that my managers and many of my coworkers had assumed that I was terminal, and would never be back.  This, despite the fact that I had told them my disease was treatable, and that chemo was working.  I even saw administrative evidence proving they thought I was "a goner"....there was a paper trail; security clearances had been cancelled, etc.   Of course, the whole time they were saying, "Get well soon ! We hope to have you back as soon as possible !"

    Thank you for your post on this seldom-discussed subject,

    max

    Max

    Kaniksu's post struck me too. I have been thinking off and on this afternoon about starting a thread on the topic, since of course, this one began on the subject of constipation.

    You are right, it is a seldom discussed subject, yet one I think is very important. It certainly has been for me. 

    Stay tuned. . .

    Rocquie

     

     

  • OO7
    OO7 Member Posts: 281
    Rocquie said:

    Max

    Kaniksu's post struck me too. I have been thinking off and on this afternoon about starting a thread on the topic, since of course, this one began on the subject of constipation.

    You are right, it is a seldom discussed subject, yet one I think is very important. It certainly has been for me. 

    Stay tuned. . .

    Rocquie

     

     

    An interesting twist on the constipation board

    Indeed Kaniksu's post hit a nerve, Rocquie I hope you start a new tread.  it's one thing I was recently thinking about.  The emotional part.  I would love to know how everyone copes because I fear I'm running out of tricks.  I don't have the support but shocked how some people who do know my situation behave.  Some get a gold star while others do not.

    Kanisu:

    I understand your moments of inner strength and enjoyed your post.  It calmed my dragons for a moment and gave me pause to appreciate my moments of escape.  Alone in a canoe at midnight on a black water lake in the Adirondacks.  With a full moon to guide me and a few loons who swam by my boat, made me appreciate my life, my journey and gave me peace.

    blessings 

  • lindary
    lindary Member Posts: 711 Member

    Kaniksu

    It is wonderful that you have such a sense of peace. It sounds like you have a very high level of awareness.

    By odd chance, as an undergrad student years ago I took some courses in sociology relating to Death and Dying. It reviewed how societies deal with the terminally ill, which overlaps into the seriously ill also.  It is a very common thing for people to not know how to approach a person or family mmember with cancer or other potentially fatal conditions.  I have noticed many times at social events that people I knew would smile and walk past without speaking. But then, they would privately pull my wife aside and ask her about me....they did not know how to speak to me, but were willing to give her a try.  Almost every time I miss church and she goes without me people stop her and ask about me. They never do this when I am present with her.

    I was dying in ICU decades ago from an auto crash (I went out of the driver's window, and the car rolled over me). The surgeons had all told my relatives to call anyone who wanted to see me again.

    Three women from my office came down together to visit, but I learned later that one, outside ICU, paniced and told the others, "I can't go in and see someone like that."  (I was orange-colored from jaundice, and on a ventillator; my left leg seriously cut up.)  Some people cannot visit a patient in ICU if they know they are seriously mutilated.  She got up the nerve and came in to the unit, and she always marveled that I ever recovered from the state I was in (I heard her tell people that).

    A friend died in Hospice from prostate two years ago.  I was with him till the end, but the same thing:  Many friends could not go to see him. It was too much.  Another friend died of breast cancer last month.  We were in close contact; she asked me a lot of questions.  As she got worse and worse, people were less and less willing to write her online or say anything.  She herself wrote to everyone, "I understand if you cannot deal with me, if it is too much for you to handle.  I understand."  Obviously, she was aware people were "backing off."  I told her, "I do not care how bad it gets, how ugly. I am willing to be here , it does not matter.  It will not bother me."

    She told me that my comment was precious to her, that it was something she valued tremendously.

    Of course we are all hoping to avoid hospice and some of these issues, but they tend to ooccur to any person with serious cancer, even if not considered terminal.  These reactions have occured around me personally many, many times.  One technique that I have found useful is to volunteer information about myself, after asking if they are interested.   I would say 80% of the time they do express interest, and seem to greatly appreciate me breaking the ice.  A few do not want to discuss it, and some people do not want their own situation shared themselves.

    So, it varies a lot. I accept anyone regardless of 'where they are at' in learning about cancer.   Be aware also that most people are pretty ignorant of cancer, with tons of misconceptions.  I have heard of educated people who were afraid that it is contageous !   Another common, but usually unspoken thought that uninformed people have when hearing someone has cancer is to think to themmselves, "How long till he is dead ?"  They often assume a cancer diagnosis is a death sentence; they do not know that cancers are all different, some terminal, some not. 

    I gradually, a little bit at a time, learned after getting over lymphoma in 2010 that my managers and many of my coworkers had assumed that I was terminal, and would never be back.  This, despite the fact that I had told them my disease was treatable, and that chemo was working.  I even saw administrative evidence proving they thought I was "a goner"....there was a paper trail; security clearances had been cancelled, etc.   Of course, the whole time they were saying, "Get well soon ! We hope to have you back as soon as possible !"

    Thank you for your post on this seldom-discussed subject,

    max

    Friends and illness

    When I was going thorugh my cycles of chemo and having days at home and days at work, I fond many of the people tended to treat me different. Over the years we have had several people at work with cancer, not all of the survived. So some people didn't know how to talk to me. I would bring up it by saying what I had, it was treable and that I was most likely to die of something other than this cancer. I think that for me, by going into work as often as I could, they got used to seeing me on a regular basis. We just go about our work. 

    With friends that I don't see that often I do get a feeling that they don't know what to say. I will break the "ice" and get the conversation going. The only bad thing is that they will give a hug as if they don't think they will see me again. 

    My family is good but my husband's family. Granted they have had 3 brothers with cancer (throat, lyphoma, small cell lung) and 1 survived (lymphoma). Yet many of them, the first thing they say is "are you going to die". No matter how many times I tell them the details and remind them that what I have is similar to what the brother who survived cancer had, they still think I am hiding something from them. I give up on them.

  • lindary said:

    Friends and illness

    When I was going thorugh my cycles of chemo and having days at home and days at work, I fond many of the people tended to treat me different. Over the years we have had several people at work with cancer, not all of the survived. So some people didn't know how to talk to me. I would bring up it by saying what I had, it was treable and that I was most likely to die of something other than this cancer. I think that for me, by going into work as often as I could, they got used to seeing me on a regular basis. We just go about our work. 

    With friends that I don't see that often I do get a feeling that they don't know what to say. I will break the "ice" and get the conversation going. The only bad thing is that they will give a hug as if they don't think they will see me again. 

    My family is good but my husband's family. Granted they have had 3 brothers with cancer (throat, lyphoma, small cell lung) and 1 survived (lymphoma). Yet many of them, the first thing they say is "are you going to die". No matter how many times I tell them the details and remind them that what I have is similar to what the brother who survived cancer had, they still think I am hiding something from them. I give up on them.

    Young relatives

    my neices and nephews are noticeably not around as much since they know I have cancer. When I was at my worst one great neice asked me "Why are you grey? Is it because you are dying?". Now I am tanned and she still is not forthcoming. But just a child. I heard two young (at the time) great nephews talking. One of them said " I hope I get his guns". Its just the way people are. I don't blame them. They are little kids. Its the least of my concerns.

  • OO7
    OO7 Member Posts: 281
    unknown said:

    Young relatives

    my neices and nephews are noticeably not around as much since they know I have cancer. When I was at my worst one great neice asked me "Why are you grey? Is it because you are dying?". Now I am tanned and she still is not forthcoming. But just a child. I heard two young (at the time) great nephews talking. One of them said " I hope I get his guns". Its just the way people are. I don't blame them. They are little kids. Its the least of my concerns.

    Call me crazy...

    Some of you know I hid my cancer because my dad was diagnosis just after me.  My husband, two friends both oncologists (one is mine, other his wife my best friend) one sister in law knew and a my husband cousin because he's the head at Johns Hopkins and there was a thought I would go there but ended up at Dana Farber.  That was it for months.

    My twisted tail was difficult at first because of my father.  Life became rather complex, I needed to be better than I was and play the role of a lifetime.  My husband wasn't so great.  My oncologist thinks he just can't bare the idea of anything being wrong with me.  I take some of the blame, my warrior like personality shows no weakness but I did need to talk to someone about this and he couldn't Talk about any of it.

    I was losing my father, in treatment, a zombie because of it and still had to put on "The Show". The holidays were tricky, somehow I needed to pull this all out of a hat and entertain, decorate, wrap, play Santa and all his elves too....

    I just could handle the complaints anymore, mindless and  trivial things that carried no wait in the world were always the topic of everyone's concerns.  Perhaps I was just sensitive but it drove me close to the point of no return!  By the seventh month a few more people knew.  My two children were old.  My other sister-in-law now knew.  She is wonderful yet never helped with anything.  Again being strong has it's downside.  The upside is people didn't really treat me differently because they had no knowledge of my cancer.  When I was diagnosis an old friend was diagnosised too.  He is rather famous and it was constantly in the news, many blessing were coming his way from all around the world.  I just wanted a few....

    With my father, I was amazed at all the love and concerned that embraced him right until the end but what I found frustrating was so many who didn't have cancer were well intenioned morons.  Sorry I had to say it.  I just would wrap my dad in my protective arms and formed a bubble.  Most days it worked.  Everyone just backed off when I was there.  I'll never forget the glances he would give me, like come now I'm about to blow!

    The crazy part:

    I recieved a call (7 months after diagnosis ), my dear friend had cancer too.  I was floored.  Did everything I could, was her cheerleader, gave care packages, sent her so much love and concern.  Listened, listened and listened.  I told her about me, she was so   Surprisingly more interested in my stage than anything else.  She finished her treatment, scans were clean and I was so darn thrilled for her.  When she learned my great result.  I got nothing.  No happy dance, no wow that's great nothing.  She was in the club, that's what's off to me...

     

    What I would love to know is where do you find your peace, strength and happy place?

  • Simon24
    Simon24 Member Posts: 45

    Pelvic Radiation

    Birder,

    It is a delight to read that you are near the end of treatments. May it all prove curative, with nothing further ever required.

    Simone, I hope your husband gains total remission also. While I never received theraupedic radiation for my prostate cancer, I have learned in studying treatments that the pelvic region is extremely tricky to radiate.  Your radiation staff should be able to recommend effective creams for skin burns/irritation. And there is a testicular cancer board also, although of course testicular cancer is a different entity from lymphoma in the testicles.

    max

     

    .

    Thank you

    Hi Max,

         Thank you for your good wishes and all the best to you, too.  I have checked out the testicular cancer board and you are right about testicular lymphoma being a different entity.  Here is a journal that a testicular lymphoma survivor kept and I think you will find it interesting. He was also diagnosed with prostate cancer.  He sometimes added an element of humor to his writing and if you look under "E-mails" and find the section "naughty bits" and "tats" you may get a chuckle.  My husband never described his radiation technicians and after reading "naughty bits" I think I know why. Embarassedhttps://nonhodgkinlymphoma.wordpress.com/logs/radiation/          Simone

  • lindary
    lindary Member Posts: 711 Member
    OO7 said:

    Call me crazy...

    Some of you know I hid my cancer because my dad was diagnosis just after me.  My husband, two friends both oncologists (one is mine, other his wife my best friend) one sister in law knew and a my husband cousin because he's the head at Johns Hopkins and there was a thought I would go there but ended up at Dana Farber.  That was it for months.

    My twisted tail was difficult at first because of my father.  Life became rather complex, I needed to be better than I was and play the role of a lifetime.  My husband wasn't so great.  My oncologist thinks he just can't bare the idea of anything being wrong with me.  I take some of the blame, my warrior like personality shows no weakness but I did need to talk to someone about this and he couldn't Talk about any of it.

    I was losing my father, in treatment, a zombie because of it and still had to put on "The Show". The holidays were tricky, somehow I needed to pull this all out of a hat and entertain, decorate, wrap, play Santa and all his elves too....

    I just could handle the complaints anymore, mindless and  trivial things that carried no wait in the world were always the topic of everyone's concerns.  Perhaps I was just sensitive but it drove me close to the point of no return!  By the seventh month a few more people knew.  My two children were old.  My other sister-in-law now knew.  She is wonderful yet never helped with anything.  Again being strong has it's downside.  The upside is people didn't really treat me differently because they had no knowledge of my cancer.  When I was diagnosis an old friend was diagnosised too.  He is rather famous and it was constantly in the news, many blessing were coming his way from all around the world.  I just wanted a few....

    With my father, I was amazed at all the love and concerned that embraced him right until the end but what I found frustrating was so many who didn't have cancer were well intenioned morons.  Sorry I had to say it.  I just would wrap my dad in my protective arms and formed a bubble.  Most days it worked.  Everyone just backed off when I was there.  I'll never forget the glances he would give me, like come now I'm about to blow!

    The crazy part:

    I recieved a call (7 months after diagnosis ), my dear friend had cancer too.  I was floored.  Did everything I could, was her cheerleader, gave care packages, sent her so much love and concern.  Listened, listened and listened.  I told her about me, she was so   Surprisingly more interested in my stage than anything else.  She finished her treatment, scans were clean and I was so darn thrilled for her.  When she learned my great result.  I got nothing.  No happy dance, no wow that's great nothing.  She was in the club, that's what's off to me...

     

    What I would love to know is where do you find your peace, strength and happy place?

    Peace, Strength & Happy Place

    Right now I wish I knew. My first thought in the morning is "what is going to ache today?". Then I have to face the day. Between the high TSH (thyroid) effects, February blahs and wondering when the stem cell transplant is going to be scheduled I could use the Peace Strength & definitely a Happy Place. 

    Right now I do find Peace in my car. I don't care where I am going but I am by myself and in charge of where I am going. (Although having to deal with dumb drivers can be a bummer.) As bad as it may sound if I have a Happy Place it is the bathroom. One place where no one will bother me. Strength, forget it. I guess two out of three aint' bad. 

    I always have a down time Jan-Feb except last year because I was too busy with the chemo & dr appts. This time I feel like if the house was falling down around me, I would just look at it. I am hoping that the increased thryoid meds kicks in son. I've been on the new dosage for 2 weeks and my primary dr said it takes 3 - 4 weeks to get it under control. UGH!!!

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    Rocquie said:

    Max

    Kaniksu's post struck me too. I have been thinking off and on this afternoon about starting a thread on the topic, since of course, this one began on the subject of constipation.

    You are right, it is a seldom discussed subject, yet one I think is very important. It certainly has been for me. 

    Stay tuned. . .

    Rocquie

     

     

    Super

    Yes, R,

    I think that would be a wonderful initiative.  

    So many responses to this issue !  It obviously is a common experience.  People on the surface always want to pretend all is happy-happy.  But it is not.  I have noticed that all cancer center advertisements portray people as if it is all so wonderful, everyone is having the time of their life. What a crock.

    If you have not seen it, this is a powerful song and video. While it is not directly related to cancer, it is about being different, about wanting to accomplish, to strive and move forward.

    max

    https://www.youtube.com/watch?v=1u-niluB8HI

     

    .