Husband and BIL have Non-Hodgkin Lymphoma

My brother-in-law (BIL) was diagnosed with Non-Hodgkin Follicular Lymphoma 3 months ago.  A month later my husband of 35 years was also diagnosed with Non-Hodgkin Follicular Lymphoma.  My BIL(married to hubby's sister) is at the "wait and see" phase of his Stage 4 cancer and my husband is receiving Rituxin and Bendo (something or other) every 28 days for his Stage 3 cancer.  As you can imagine the family is stressed out by this, but what is making things worse is that everyone is staying an awful long time in the - I can't believe this is happening phase, while we are thrust into the reality that my husband has already had 2 cycles of chemo. I just started a new job and am feeling overwhelmed by all that I need to do to help my husband, as well as fear of the unknown, as this is all so new to us. I've heard a lot of, "Call me if you need anything" and  "You're in our prayers", but how do you ask for help when you're not sure what you need?  

Comments

  • Unknown
    edited October 2016 #2
    It takes time

    just take comfort in the fact they both have very treatable and manageable cancers.

  • lindary
    lindary Member Posts: 711 Member
    people

    I worked and went to church throughout my treatments. I got a lot of comments too. When they said they would keep me in their prayers I always said "Thank you. That means a lto to me.".  (Since I work with people from other countires, I never asked what religion.) When people asked if they could help or to call if I needed anything I would tell them "We are good right now but if anythings up where we need help, I iwll let you know.".  Another thing I ran into was people making suggestions about different thing, either because of some experience they had or something I said. I would listen closely to what they said and word my answer carefully. Sometimes it was "thanks I'll look into that." or "it doesn't apply to my type of cancer/ cancer treatment, ubt I iwll keep it in mind.". I treated each as someone who realy was trying to be supportive in some way. 

    My exception was my husband's immediate family. He has many siblings and the first thing many of them said was "are you going to die.".  My answer to them was "we all die some day and right now I still don't have any idea when my day will be.". Then change the subject. There is still one of them who repeatily asks if my cancer is gone even though I have told that person my status, in remission, many times. Fortunately they all live in other states so I can avoid them easily. 

    Good luck to your husband and BIL. The one thing they both need to remember is - drink a lot of water. Especially the first week after chemo. I did 2 liters or more every day that first week and into the second. Then 1 liter until the next round. 

  • po18guy
    po18guy Member Posts: 1,326 Member
    edited October 2016 #4
    Not the terrorizing situation that it could be

    As GKH said, follicular lymphoma is viewed as a chronic, manageable illness. As well, we are not living in a static world. Research is ongoing and advancements are being made on a steady basis. It changes one's life, but need not do so to a degree which completely upsets that life. You might consider viewing it as similar to a chronic heart condition which needs watching and occasional treatment. Follicular lymphoma (and many other varieities) is rarely an emergency, and remains treatable at all stages. You might be surprised at just how quasi-normal life can be after all of this information is digested.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,752 Member
    po18guy said:

    Not the terrorizing situation that it could be

    As GKH said, follicular lymphoma is viewed as a chronic, manageable illness. As well, we are not living in a static world. Research is ongoing and advancements are being made on a steady basis. It changes one's life, but need not do so to a degree which completely upsets that life. You might consider viewing it as similar to a chronic heart condition which needs watching and occasional treatment. Follicular lymphoma (and many other varieities) is rarely an emergency, and remains treatable at all stages. You might be surprised at just how quasi-normal life can be after all of this information is digested.

    Never

    Mumsy,

    I cannot recall a follicular patient dying here, ever (none announced on the Board whom I remember).

    It is an extremely 'indolent' (slow-moving) cancer.  When Po writes that it is "manageable," be aware that usually means over a decade, if not multiple decades.  Indolent lymphomas, put into remission, will sometimes morph into more aggressive forms of lymphoma or a leukemia, but that is certainly nothing to be worring about at this point. More often than not, they do not morph.

    max

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,752 Member
    edited October 2016 #6
    lindary said:

    people

    I worked and went to church throughout my treatments. I got a lot of comments too. When they said they would keep me in their prayers I always said "Thank you. That means a lto to me.".  (Since I work with people from other countires, I never asked what religion.) When people asked if they could help or to call if I needed anything I would tell them "We are good right now but if anythings up where we need help, I iwll let you know.".  Another thing I ran into was people making suggestions about different thing, either because of some experience they had or something I said. I would listen closely to what they said and word my answer carefully. Sometimes it was "thanks I'll look into that." or "it doesn't apply to my type of cancer/ cancer treatment, ubt I iwll keep it in mind.". I treated each as someone who realy was trying to be supportive in some way. 

    My exception was my husband's immediate family. He has many siblings and the first thing many of them said was "are you going to die.".  My answer to them was "we all die some day and right now I still don't have any idea when my day will be.". Then change the subject. There is still one of them who repeatily asks if my cancer is gone even though I have told that person my status, in remission, many times. Fortunately they all live in other states so I can avoid them easily. 

    Good luck to your husband and BIL. The one thing they both need to remember is - drink a lot of water. Especially the first week after chemo. I did 2 liters or more every day that first week and into the second. Then 1 liter until the next round. 

    Exactly

    Linda,

    I can so well relate to what you write.  I took a college course in the sociology of fatal illnesses and funeral practices decades ago, and what you describe is COMMON among laypeople regarding cancer patients:  In their medical ignorance, many people, when they hear someone has cancer, thinks (and often asks) "How long till they are dead ?"  Unfortunately, many patients have this reaction to their own diagnosis.    When I got my second cancer diagnosis in 2014, I YAWNED in the urologist's face -- not intentionally.  But I had read so much about prostate cancer that I knew that it is so managable that it was nothing to worry about.  My wife and I went home and hardly mentioned the diagnosis.  We scheduled appointments and forgot about it. No hysteria, no crying, no hand-wringing.  I leave that for others, who don't realize that I am planning to be fine.

    A llymphoma diagnosis also is not the time to believe the sky is falling.  Most patients, even Stage 4, are either curable (in the sense of  total, permanent remission) or extremely long-term maintenance.

    People still greet me at church with long, serious faces, and ask if "I'm OK ?"  Their assumption seems to be that I am not.  Many won't ask me directly, but pull my wife aside.  Bless them all, they all mean well.  It is an awkward thing.  When people do ask me directly, I most commonly attempt to technically explain why me dying of cancer is probably as unlikely as THEM dying of cancer.  Probably some then just assume I'm "in denial."

    There are numerous cancer diagnoses that are indeed a death sentence, but lymphoma ordinariy is not one of these.  I write this for Mumsy, not you Linda, since you already know of what I speak, better than most.

    max

  • po18guy
    po18guy Member Posts: 1,326 Member

    Never

    Mumsy,

    I cannot recall a follicular patient dying here, ever (none announced on the Board whom I remember).

    It is an extremely 'indolent' (slow-moving) cancer.  When Po writes that it is "manageable," be aware that usually means over a decade, if not multiple decades.  Indolent lymphomas, put into remission, will sometimes morph into more aggressive forms of lymphoma or a leukemia, but that is certainly nothing to be worring about at this point. More often than not, they do not morph.

    max

    We create our own survival curves

    I am into my ninth year after having had two sub-types of an aggressive T-Cell Lymphoma. Two relapses. Been stage IV at least twice. Probably 100 tumors total over that time frame, in addition to bone marrow and small intestine involvement. I was staring my demise in the face in 2008. In 2009. In 2014. I have expected to succumb to this several times but I simply haven't. So, here I am, with no sign of cancer. Not knowing what else to do, I simply just go on living. 

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,752 Member
    po18guy said:

    We create our own survival curves

    I am into my ninth year after having had two sub-types of an aggressive T-Cell Lymphoma. Two relapses. Been stage IV at least twice. Probably 100 tumors total over that time frame, in addition to bone marrow and small intestine involvement. I was staring my demise in the face in 2008. In 2009. In 2014. I have expected to succumb to this several times but I simply haven't. So, here I am, with no sign of cancer. Not knowing what else to do, I simply just go on living. 

    Superb

    To repeat that great Bob Dylan lyric:

    The only thing I knew how to do was to keep on keepin' on, gettin' through, tangled up in blue !

  • GSP2
    GSP2 Member Posts: 103 Member
    po18guy said:

    We create our own survival curves

    I am into my ninth year after having had two sub-types of an aggressive T-Cell Lymphoma. Two relapses. Been stage IV at least twice. Probably 100 tumors total over that time frame, in addition to bone marrow and small intestine involvement. I was staring my demise in the face in 2008. In 2009. In 2014. I have expected to succumb to this several times but I simply haven't. So, here I am, with no sign of cancer. Not knowing what else to do, I simply just go on living. 

    I like that a lot

    along with the only true statistic is oneself.

  • lindary
    lindary Member Posts: 711 Member

    Exactly

    Linda,

    I can so well relate to what you write.  I took a college course in the sociology of fatal illnesses and funeral practices decades ago, and what you describe is COMMON among laypeople regarding cancer patients:  In their medical ignorance, many people, when they hear someone has cancer, thinks (and often asks) "How long till they are dead ?"  Unfortunately, many patients have this reaction to their own diagnosis.    When I got my second cancer diagnosis in 2014, I YAWNED in the urologist's face -- not intentionally.  But I had read so much about prostate cancer that I knew that it is so managable that it was nothing to worry about.  My wife and I went home and hardly mentioned the diagnosis.  We scheduled appointments and forgot about it. No hysteria, no crying, no hand-wringing.  I leave that for others, who don't realize that I am planning to be fine.

    A llymphoma diagnosis also is not the time to believe the sky is falling.  Most patients, even Stage 4, are either curable (in the sense of  total, permanent remission) or extremely long-term maintenance.

    People still greet me at church with long, serious faces, and ask if "I'm OK ?"  Their assumption seems to be that I am not.  Many won't ask me directly, but pull my wife aside.  Bless them all, they all mean well.  It is an awkward thing.  When people do ask me directly, I most commonly attempt to technically explain why me dying of cancer is probably as unlikely as THEM dying of cancer.  Probably some then just assume I'm "in denial."

    There are numerous cancer diagnoses that are indeed a death sentence, but lymphoma ordinariy is not one of these.  I write this for Mumsy, not you Linda, since you already know of what I speak, better than most.

    max

    Are you OK?

    That question really gets me too! Sometimes I get scarstic and say "I didn't sleep good last night. The dog hogged the bed again."

    Back when I was told I was in remission I sent an email with the news to everyone I had been keeping updated on my journey. Some of them I recenty saw after not having seen in months and they will just ask me "how I am doing" or "are you still working". Given my age both questions are pretty normal. The people who focus on the "are you OK" question are the same ones who other such questions for years after an accident, illness or surgery. 

     

  • po18guy
    po18guy Member Posts: 1,326 Member
    GSP2 said:

    I like that a lot

    along with the only true statistic is oneself.

    Statistics...

    Apply, by definition, only to populations. They do not represent a single individual. And, since the bell curve has a thin edge at the far (desireable) side, aim for that! Where else do you want to be?

  • Mumsy430
    Mumsy430 Member Posts: 6
    unknown said:

    It takes time

    just take comfort in the fact they both have very treatable and manageable cancers.

    It takes time

    Thanks GKH

  • Mumsy430
    Mumsy430 Member Posts: 6
    lindary said:

    people

    I worked and went to church throughout my treatments. I got a lot of comments too. When they said they would keep me in their prayers I always said "Thank you. That means a lto to me.".  (Since I work with people from other countires, I never asked what religion.) When people asked if they could help or to call if I needed anything I would tell them "We are good right now but if anythings up where we need help, I iwll let you know.".  Another thing I ran into was people making suggestions about different thing, either because of some experience they had or something I said. I would listen closely to what they said and word my answer carefully. Sometimes it was "thanks I'll look into that." or "it doesn't apply to my type of cancer/ cancer treatment, ubt I iwll keep it in mind.". I treated each as someone who realy was trying to be supportive in some way. 

    My exception was my husband's immediate family. He has many siblings and the first thing many of them said was "are you going to die.".  My answer to them was "we all die some day and right now I still don't have any idea when my day will be.". Then change the subject. There is still one of them who repeatily asks if my cancer is gone even though I have told that person my status, in remission, many times. Fortunately they all live in other states so I can avoid them easily. 

    Good luck to your husband and BIL. The one thing they both need to remember is - drink a lot of water. Especially the first week after chemo. I did 2 liters or more every day that first week and into the second. Then 1 liter until the next round. 

    people

    Sometimes the best response from people is no response.

  • Mumsy430
    Mumsy430 Member Posts: 6
    po18guy said:

    Not the terrorizing situation that it could be

    As GKH said, follicular lymphoma is viewed as a chronic, manageable illness. As well, we are not living in a static world. Research is ongoing and advancements are being made on a steady basis. It changes one's life, but need not do so to a degree which completely upsets that life. You might consider viewing it as similar to a chronic heart condition which needs watching and occasional treatment. Follicular lymphoma (and many other varieities) is rarely an emergency, and remains treatable at all stages. You might be surprised at just how quasi-normal life can be after all of this information is digested.

    Not the terrorizing situation that it could be

    My husband just got fitted for his Trek road bike, so he ready to start riding again.  Your pic on your bike gives him hope he can get back on the old "bike" saddle again!

     

  • Mumsy430
    Mumsy430 Member Posts: 6

    Never

    Mumsy,

    I cannot recall a follicular patient dying here, ever (none announced on the Board whom I remember).

    It is an extremely 'indolent' (slow-moving) cancer.  When Po writes that it is "manageable," be aware that usually means over a decade, if not multiple decades.  Indolent lymphomas, put into remission, will sometimes morph into more aggressive forms of lymphoma or a leukemia, but that is certainly nothing to be worring about at this point. More often than not, they do not morph.

    max

    Never

    What a relief to hear.