Life after Hodgkins

olivia
olivia Member Posts: 6
Hi! I just found this site today and I'm glued to it reading everyones stories, most of which are a copy of my own. I had HD in 1982 and had a stageing operation, spleen removed as well as a 12 week fetus, I was then treated with 3 months of chemo followed by 3 mo. radiation to my neck/chest/abdomen followed by 5 more months of chemo. The side effects have started rearing their ugly heads now. A few years after treatment I found out that I would not be able to have children, the chemo &/ radiation had distroyed my overies, I went into menapause at 23 and started HRT, a few years later I had a hysterectomy due to complications. The hypothyroidism followed. The chronic fatigue has followed me all these 18 years. I had many good years, then in 1999 I started fainting, ended up with a pacemaker due to damage from radiation, one year later I began to have trouble breathing, an echo of the heart showed severe leaking from my valves. I had open heart surgery to repair my mitral and tricuspid valves. I continue to have palpataions which they are unsure about. Now, just last week during my yearly checkup with the oncologist he found my liver function blood tests to be high, so I'm nervously awaiting what he will do next. I ask him if this tunnel ends and his reply was, "we learn more and more everyday about the effects of the treatments given, we can only address each problem as they arise", great comfort, huh?! Hopefully my being a survivor this long will help survivors in the future not have to deal with all these problems. I look forward to following everyone and I'll post again when I know more about the liver.
I have found that massages are wonderful and they help break up the scar tissue, for me my arms are so tight I can't lift them above my head, these treatments have started to loosen them up some. Take care and thank the good Lord we are here and can visit!
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Comments

  • 36walter
    36walter Member Posts: 5
    HI, I too, just found this site. Our stories have many similarites. I was diagnosed in 1977 at stage 2b. Had radiation and MOPP chemo. Have the thyroid thing..did the menopause thing at 32 (though thank god it was after the birth of my son). Have a hole in my heart sac and have recently discovered cysts on my kidney. Going Tues for my annual checkup at Dana Farber in Boston.
    How did you do with your liver?
  • rosenose
    rosenose Member Posts: 1
    I just discovered this site. I really appreciation your post. I am an 18 year survivor of HD. I have always dwelled on the positives, like, I am a live and here. But, I have never had the chance to say how I REALLY feel. I am tired all of the time; lots of problems with my thyroid. I take levoxyl. Levels change all of the time. When I am out of steam, I am OUT of steam, meaning, when I get too tired, I cannot continue on. I just have to go to bed. I had horrible complications with both pregnancies, but at least I have two great kids. I am so thankful for that. However, I went into early menopause and had a nearly total hysterectomy. So, I'm a little bummed. I am 38 years old, overweight, and a little "weary". I know I should always be thankful, and believe me, I am, but, I am angry that as the years wear on, other problems arise. I worry about breast cancer. I don't like to tell anyone that, but, I do. I worry about other secondary cancers. But, again, I don't tell anyone. I am glad I am alive. I really am. But, I also wonder, 'what is next?' I appreciate a place to share my neurosis or sorts and not be criticized. Thanks for this. Thank the lord we are all here! I am glad! But, I wish I had the energy I had before.
  • UKKaz41
    UKKaz41 Member Posts: 3
    rosenose said:

    I just discovered this site. I really appreciation your post. I am an 18 year survivor of HD. I have always dwelled on the positives, like, I am a live and here. But, I have never had the chance to say how I REALLY feel. I am tired all of the time; lots of problems with my thyroid. I take levoxyl. Levels change all of the time. When I am out of steam, I am OUT of steam, meaning, when I get too tired, I cannot continue on. I just have to go to bed. I had horrible complications with both pregnancies, but at least I have two great kids. I am so thankful for that. However, I went into early menopause and had a nearly total hysterectomy. So, I'm a little bummed. I am 38 years old, overweight, and a little "weary". I know I should always be thankful, and believe me, I am, but, I am angry that as the years wear on, other problems arise. I worry about breast cancer. I don't like to tell anyone that, but, I do. I worry about other secondary cancers. But, again, I don't tell anyone. I am glad I am alive. I really am. But, I also wonder, 'what is next?' I appreciate a place to share my neurosis or sorts and not be criticized. Thanks for this. Thank the lord we are all here! I am glad! But, I wish I had the energy I had before.

    Life after Hodgkins and Non Hodgkins
    HI guys

    This is exactly why I joined this site - i was looking to see if anyone else had recovered from the disease just to be presented with a set of new medical problems!

    I so agree with you RoseNose - im so grateful to be here and to have got through it but am struggling with an early Menopause with symptoms like ive never experienced before! It seems that with HD or NHL the docs know exactly what to do but with all the associated problems such as tiredness, anxiety, bone pain, hot flushes etc etc they just 'react' as each one crops up - sort of treat it with pain killers and send u away for another 3 months!

    How frustrating eh? I find myself saying 'why should i have to put up with ill health?' I want my health and my life back.. My poor doc must think im stalking him as I spend so much time in his office with the same old problems!

    What side effects of treatments has anyone else been left with and are there alot of us?

    karen
    x
  • dixiegirl
    dixiegirl Member Posts: 1,043
    UKKaz41 said:

    Life after Hodgkins and Non Hodgkins
    HI guys

    This is exactly why I joined this site - i was looking to see if anyone else had recovered from the disease just to be presented with a set of new medical problems!

    I so agree with you RoseNose - im so grateful to be here and to have got through it but am struggling with an early Menopause with symptoms like ive never experienced before! It seems that with HD or NHL the docs know exactly what to do but with all the associated problems such as tiredness, anxiety, bone pain, hot flushes etc etc they just 'react' as each one crops up - sort of treat it with pain killers and send u away for another 3 months!

    How frustrating eh? I find myself saying 'why should i have to put up with ill health?' I want my health and my life back.. My poor doc must think im stalking him as I spend so much time in his office with the same old problems!

    What side effects of treatments has anyone else been left with and are there alot of us?

    karen
    x

    I got
    I got early menopause too, at 42. Way too early in my books, but I don't miss much. The hotflashes are the pitts in the summer, but winter feels pretty good LOL.

    I have issues from the radiation, but I am alive....that's what counts.

    The best med I have been given for the menopause is Effexor XR. Works great for the hotflashes and anxiety.
  • 1962girl
    1962girl Member Posts: 2
    dixiegirl said:

    I got
    I got early menopause too, at 42. Way too early in my books, but I don't miss much. The hotflashes are the pitts in the summer, but winter feels pretty good LOL.

    I have issues from the radiation, but I am alive....that's what counts.

    The best med I have been given for the menopause is Effexor XR. Works great for the hotflashes and anxiety.

    I was diagnosed with stage
    I was diagnosed with stage 2b in 1982. I was 19. I had chemo, radiation, and my spleen removed. My thyroid stopped working at age 23. I had a baby when I was 25. Lucky I did because my overies stopped working when I was 32. I had liver cancer when i was 40. And diagnosed with osteoporosis at age 41. Ever since my overies stopped working, my short term memory is almost non-existent and it's very hard to concentrate. I was a CPA and had to quit because my brain was foggy. I've learned to live with all of that. I have a great desk job. Not as many responsibilities as a CPA. Everything that has happened is behind me. Lucky for me that my heart and lungs are good. But now my neck has been bothering me. My neck and the sides of my face will tingle and burn. It's happening more and more. And my neck muscles are always hard as a rock. I've had to start taking a pain pill every afternoon to get through the day. BUT I AM ALIVE. I'm now 49 years old and loving every minute of it. I just wish I wasn't in pain every single day. My neck feels like it's on fire. Does anyone else have these symptoms? Thanks for listening!!
  • cathyp
    cathyp Member Posts: 376 Member
    1962girl said:

    I was diagnosed with stage
    I was diagnosed with stage 2b in 1982. I was 19. I had chemo, radiation, and my spleen removed. My thyroid stopped working at age 23. I had a baby when I was 25. Lucky I did because my overies stopped working when I was 32. I had liver cancer when i was 40. And diagnosed with osteoporosis at age 41. Ever since my overies stopped working, my short term memory is almost non-existent and it's very hard to concentrate. I was a CPA and had to quit because my brain was foggy. I've learned to live with all of that. I have a great desk job. Not as many responsibilities as a CPA. Everything that has happened is behind me. Lucky for me that my heart and lungs are good. But now my neck has been bothering me. My neck and the sides of my face will tingle and burn. It's happening more and more. And my neck muscles are always hard as a rock. I've had to start taking a pain pill every afternoon to get through the day. BUT I AM ALIVE. I'm now 49 years old and loving every minute of it. I just wish I wasn't in pain every single day. My neck feels like it's on fire. Does anyone else have these symptoms? Thanks for listening!!

    Radiation Fibrosis Snydrome
    You may be describing RFS from the radiation theraphy. Michael Stubblefield, M.D. from Memorial Sloan Kettering Cancer Center is an expert in this area.

    May I ask how the liver cancer was found?
    Best wishes to you and continued good health.

    Cathy
    HD 1989 - RADS
    HD 1994 - ABVD
    IDC 2008 - DBL MX
  • taylorman
    taylorman Member Posts: 6
    UKKaz41 said:

    Life after Hodgkins and Non Hodgkins
    HI guys

    This is exactly why I joined this site - i was looking to see if anyone else had recovered from the disease just to be presented with a set of new medical problems!

    I so agree with you RoseNose - im so grateful to be here and to have got through it but am struggling with an early Menopause with symptoms like ive never experienced before! It seems that with HD or NHL the docs know exactly what to do but with all the associated problems such as tiredness, anxiety, bone pain, hot flushes etc etc they just 'react' as each one crops up - sort of treat it with pain killers and send u away for another 3 months!

    How frustrating eh? I find myself saying 'why should i have to put up with ill health?' I want my health and my life back.. My poor doc must think im stalking him as I spend so much time in his office with the same old problems!

    What side effects of treatments has anyone else been left with and are there alot of us?

    karen
    x

    Life With HD
    I found this site today and felt like I should join to share my experience with dealing with Stage IIIB Hodgkins. It was tough accepting my diagnosis 20 years ago and I've been dealing with residual effects of my treatment since. However, not only did I recover, but I married and had kids (this wasn't supposed to happen), and have been enjoying life. I've managed to keep the after-effects of my treatment under control with great chemistry, exercise and attitude. I really look forward to providing my 2 cents to anyone who needs it.

    Mark
  • miss maggie
    miss maggie Member Posts: 929
    taylorman said:

    Life With HD
    I found this site today and felt like I should join to share my experience with dealing with Stage IIIB Hodgkins. It was tough accepting my diagnosis 20 years ago and I've been dealing with residual effects of my treatment since. However, not only did I recover, but I married and had kids (this wasn't supposed to happen), and have been enjoying life. I've managed to keep the after-effects of my treatment under control with great chemistry, exercise and attitude. I really look forward to providing my 2 cents to anyone who needs it.

    Mark

    Hello Markq
    Dear Mark,

    Happy Father's Day. What great news to read of your success.God
    Bless, staying well for all the years to come.

    Love Maggie
  • taylorman
    taylorman Member Posts: 6

    Hello Markq
    Dear Mark,

    Happy Father's Day. What great news to read of your success.God
    Bless, staying well for all the years to come.

    Love Maggie

    Thanks, miss maggie!

    Thanks, miss maggie!
  • glistengal
    glistengal Member Posts: 2
    taylorman said:

    Life With HD
    I found this site today and felt like I should join to share my experience with dealing with Stage IIIB Hodgkins. It was tough accepting my diagnosis 20 years ago and I've been dealing with residual effects of my treatment since. However, not only did I recover, but I married and had kids (this wasn't supposed to happen), and have been enjoying life. I've managed to keep the after-effects of my treatment under control with great chemistry, exercise and attitude. I really look forward to providing my 2 cents to anyone who needs it.

    Mark

    Life With HD
    It is great to see others that have had the same effects from our treatment. I, like Mark, had children after HD...twins in 84! Just became a grandmother on July 1st!!!Had HD in 78 and have had great years but had to deal with the same problems so many mention. I would like to know Mark's 2 cents. I only drink distilled water and eat mostly organics. I, like many, take life each day and try to make the best of it. Would love to hear about the chemistry part.

    Debbie
  • TJ74
    TJ74 Member Posts: 18
    Newbie
    I am a newbie to this site as well, as I just joined yesterday. I hit my 20 years of survival this July 4th and I have never been in a support group. It has been a very lonely 20 years as my last treatment was a bone marrow transplant and the only two people I knew that had that aren't here anymore. It's re-leaving to see that I am not alone as I too live with on-going chronic conditions like chronic fatigue, chronic pain, insomnia, anxiety & depression. I'm sure I might find some understanding and empathy here as isolation has been my best friend for so long. I definitely can relate with feeling like I've been a ground breaker for the medical field. I was my doctors first cancer patient as I was miss-diagnosed for 7 months and was given 3 months to live when I finally was diagnosed in 1991. But he has saved allot of people since then because of me. I was never told that if I lived through the transplant that I would have so many chronic conditions that would plague me for the rest of my life. I gotta be honest, don't think I would have done it if I knew. I'm not trying to be negative, but it has been hard to say the least. Both my parents say they would never go through what they saw me go through. I couldn't watch my kids go through it, although I here the treatment is better these days. Thanks for sharing some of your journey.

    TJ
  • bluerose
    bluerose Member Posts: 1,104
    Yikes, eerily similar
    Wow, I have been on this site for awhile now but your post sure is similar to my history and after effects but I had NHL.

    Did you have the chemo drug adriamycin years ago? I was treated in 1989 and again with a transplant in 1991 on recurrance. The adriamycin they think is responsible for damaging my heart and I wound up with a pacemaker too for severe atrial fibrulation. I was close to fainting all the time and in ambulances many many times for the same thing. The pacemaker and a few heart drugs helped alot with the afib which they expected to get worse over time. About 2 years ago now it just went away. It was like a miracle, non of my side effects go away, they just get worse and most of them have no solution. I don't have to tell you how frustrating this is.

    See if they concur about the atrial fibrulation and adriamycin - it's pretty famous for causing heart problems. There are others that can do the same thing too.

    Glad you found the site too, it's very validating and supportive. Wish I had it 25 years ago when this all started.

    Blessings,

    Bluerose
  • TJ74
    TJ74 Member Posts: 18
    bluerose said:

    Yikes, eerily similar
    Wow, I have been on this site for awhile now but your post sure is similar to my history and after effects but I had NHL.

    Did you have the chemo drug adriamycin years ago? I was treated in 1989 and again with a transplant in 1991 on recurrance. The adriamycin they think is responsible for damaging my heart and I wound up with a pacemaker too for severe atrial fibrulation. I was close to fainting all the time and in ambulances many many times for the same thing. The pacemaker and a few heart drugs helped alot with the afib which they expected to get worse over time. About 2 years ago now it just went away. It was like a miracle, non of my side effects go away, they just get worse and most of them have no solution. I don't have to tell you how frustrating this is.

    See if they concur about the atrial fibrulation and adriamycin - it's pretty famous for causing heart problems. There are others that can do the same thing too.

    Glad you found the site too, it's very validating and supportive. Wish I had it 25 years ago when this all started.

    Blessings,

    Bluerose

    I'm not sure what the names of the chemo drugs I was on as I wasn't told much about anything. The first 6 months weren't that bad, but the second time, the chemo was horrific, and the six days of intensive chemo for the transplant were more than horrific. I fainted/past out from those a few times. Since all that I have lots of disabling side affects that they cant diagnose and I agree with you about how frustrating that is. As for my heart, I have a very high resting pulse rate and an high blood pressure at rest. I have been on and off of heart meds. It's nice to find someone who can relate with. It definitely plays on the physiological every time you feel something wrong and you wonder if your sick again and then everything checks out ok. I was miss-diagnosed for 7 months and when they finally found out, gave me three months to live. So who saying they won't miss something again this time? Well it keeps you on your toes right? Makes for an interesting life.
  • LJT
    LJT Member Posts: 2
    taylorman said:

    Life With HD
    I found this site today and felt like I should join to share my experience with dealing with Stage IIIB Hodgkins. It was tough accepting my diagnosis 20 years ago and I've been dealing with residual effects of my treatment since. However, not only did I recover, but I married and had kids (this wasn't supposed to happen), and have been enjoying life. I've managed to keep the after-effects of my treatment under control with great chemistry, exercise and attitude. I really look forward to providing my 2 cents to anyone who needs it.

    Mark

    HD side effects
    Taylorman -I too had Stage IIIB Hodgkins lymphoma. I was diagnosed with it in April 2011 and started chemo in June. I had 6 cycles (12 treatments) of ABVD. I am pleased to report that the PetScan of Dec 10, 2011 showed no active lymphoma cells - so a complete response to treatment. However, my oncologist sent me to the radiation oncologist who is recommending radiation to the sites of initial bulky disease. The main site is around my heart and lung, more toward the left side (originally the mass was 6 inches long and 5 7/8 inchese wide)- the radiation will cover about 30% of my heart which is quite daunting. He will also radiate my abdomin where the walnut size mass was. (The radiology doctor says that there aren't alot of studies on Stage III and IV and that there is controversy as far as whether radiation following chemo for advanced stage disease is warranted. He also said that there are alot of risks associated with radiation and that ultimately radiation causes cancer.

    I do not fit into the norm for hodgkins lymphoma - I am female at age 45. I am hoping you can provide me with any information on your experience with treatment - did you have chemo followed by radiation?
  • beckycheman
    beckycheman Member Posts: 4
    TJ74 said:

    I'm not sure what the names of the chemo drugs I was on as I wasn't told much about anything. The first 6 months weren't that bad, but the second time, the chemo was horrific, and the six days of intensive chemo for the transplant were more than horrific. I fainted/past out from those a few times. Since all that I have lots of disabling side affects that they cant diagnose and I agree with you about how frustrating that is. As for my heart, I have a very high resting pulse rate and an high blood pressure at rest. I have been on and off of heart meds. It's nice to find someone who can relate with. It definitely plays on the physiological every time you feel something wrong and you wonder if your sick again and then everything checks out ok. I was miss-diagnosed for 7 months and when they finally found out, gave me three months to live. So who saying they won't miss something again this time? Well it keeps you on your toes right? Makes for an interesting life.

    Frustrating year post chemo
    Hi all! I too just found this site today and am sooooo grateful. I finished chemo almost a year ago and have pretty alone ever since. I often wonder if anyone else feels the way I do, and after reading all this, I guess you do! I think this year post chemo has sucked more than the chemo itself. I've had some side effects from the chemo which has really thrown a wrench in my life but I feel like my husband just kind of expects me to just get back to normal. He is a supportive husband most of the time but a few weeks ago he told me to just get over it already! I was so pissed but how can you explain to someone who hasn't been through this that nothing is the same? Io have never been in a support group and have had a hard time b/c when I got diagnosed I august of 2010, we had just moved to Kansas from Germany and in July of 2011 we moved to Hawaii. So it's been hard just trying to deal with new people, etc. Anyway, just wanted to vent I guess!
    Thanks! Becky. :)
  • beckycheman
    beckycheman Member Posts: 4
    TJ74 said:

    I'm not sure what the names of the chemo drugs I was on as I wasn't told much about anything. The first 6 months weren't that bad, but the second time, the chemo was horrific, and the six days of intensive chemo for the transplant were more than horrific. I fainted/past out from those a few times. Since all that I have lots of disabling side affects that they cant diagnose and I agree with you about how frustrating that is. As for my heart, I have a very high resting pulse rate and an high blood pressure at rest. I have been on and off of heart meds. It's nice to find someone who can relate with. It definitely plays on the physiological every time you feel something wrong and you wonder if your sick again and then everything checks out ok. I was miss-diagnosed for 7 months and when they finally found out, gave me three months to live. So who saying they won't miss something again this time? Well it keeps you on your toes right? Makes for an interesting life.

    Frustrating year post chemo
    Hi all! I too just found this site today and am sooooo grateful. I finished chemo almost a year ago and have pretty alone ever since. I often wonder if anyone else feels the way I do, and after reading all this, I guess you do! I think this year post chemo has sucked more than the chemo itself. I've had some side effects from the chemo which has really thrown a wrench in my life but I feel like my husband just kind of expects me to just get back to normal. He is a supportive husband most of the time but a few weeks ago he told me to just get over it already! I was so pissed but how can you explain to someone who hasn't been through this that nothing is the same? Io have never been in a support group and have had a hard time b/c when I got diagnosed I august of 2010, we had just moved to Kansas from Germany and in July of 2011 we moved to Hawaii. So it's been hard just trying to deal with new people, etc. Anyway, just wanted to vent I guess!
    Thanks! Becky. :)
  • smelltheroses
    smelltheroses Member Posts: 2

    Frustrating year post chemo
    Hi all! I too just found this site today and am sooooo grateful. I finished chemo almost a year ago and have pretty alone ever since. I often wonder if anyone else feels the way I do, and after reading all this, I guess you do! I think this year post chemo has sucked more than the chemo itself. I've had some side effects from the chemo which has really thrown a wrench in my life but I feel like my husband just kind of expects me to just get back to normal. He is a supportive husband most of the time but a few weeks ago he told me to just get over it already! I was so pissed but how can you explain to someone who hasn't been through this that nothing is the same? Io have never been in a support group and have had a hard time b/c when I got diagnosed I august of 2010, we had just moved to Kansas from Germany and in July of 2011 we moved to Hawaii. So it's been hard just trying to deal with new people, etc. Anyway, just wanted to vent I guess!
    Thanks! Becky. :)

    frustrating year post chemo
    Hi Becky. You are not alone. You really are not. I am lying here in bed right now in the middle of the day still waiting for some energy to get up and attend to my chores before my son comes home from school. I try to get up and get things done before he comes home because he gets upset when he sees me lying down. He is 13 now but he keeps a close eye on me. This cancer experience was very hard on him too. I have not returned to work yet. I was a law clerk before my diagnosis and treatment in a very busy practice; Working late and on weekends was the norm but I was happy to provide a good life for me and my son. I was diagnosed with stage IV non-hodgkins lymphoma on Jan 1, 2010 and well things have never been the same since. My friends were wonderful with me during treatment and even a little bit after treatment but it's almost a year and so since i have been in remission and i think most people are wondering, what's up with her? I mean, the cancer's gone right? I feel so tired, i feel sad, i feel like life is going on around me and i am a ghost, observing. I mean don't get me wrong, i do feel very lucky and so grateful to be here however, i am only 46 but i honestly feel like i am 65.
  • tinktink36
    tinktink36 Member Posts: 3
    UKKaz41 said:

    Life after Hodgkins and Non Hodgkins
    HI guys

    This is exactly why I joined this site - i was looking to see if anyone else had recovered from the disease just to be presented with a set of new medical problems!

    I so agree with you RoseNose - im so grateful to be here and to have got through it but am struggling with an early Menopause with symptoms like ive never experienced before! It seems that with HD or NHL the docs know exactly what to do but with all the associated problems such as tiredness, anxiety, bone pain, hot flushes etc etc they just 'react' as each one crops up - sort of treat it with pain killers and send u away for another 3 months!

    How frustrating eh? I find myself saying 'why should i have to put up with ill health?' I want my health and my life back.. My poor doc must think im stalking him as I spend so much time in his office with the same old problems!

    What side effects of treatments has anyone else been left with and are there alot of us?

    karen
    x

    Life after Hodgkins
    Just found this site today. I was diagnosed in 2007 six months prior to that I was tramatized 3 weekends back to back and they say that is what triggered my Hodgkins. I think I am going through menopause right now. Last year I started having problems with my back and had 6 back surgeries and 2 more this year. When I was diagnosed in 2007 I was married and well my marriage ended because he couldn't handle it but really he was cheating. But God gave me the strength to fight for my life. I went through 6months of chemo and 20 radiation treatments. My life was taken away from and every thing was destroyed. I have picked up the pieces it took me almost 4 years to do so. I struggle with keeping insurance and hanging on with my job so I have insurance. Now I have back problems on top of it and it is awlful. I am thankful that I am a live but what is my purpose. I have issues with the hot flashes waking up laying in a puddle of sweat and it scares me because I done that when I found out I had cancer. I can't hardly even afford to go to the doctor because of my insurance and its deductable. So what is one to do lol. My cancer doc tells me I am not taking it my cancer serious but I can afford my PET scan that is due in April. Out of work on medical leave due to my back surgeries and I have to fight to pay medical how to you afford to go to doctor.

    Tina
  • tinktink36
    tinktink36 Member Posts: 3
    TJ74 said:

    Newbie
    I am a newbie to this site as well, as I just joined yesterday. I hit my 20 years of survival this July 4th and I have never been in a support group. It has been a very lonely 20 years as my last treatment was a bone marrow transplant and the only two people I knew that had that aren't here anymore. It's re-leaving to see that I am not alone as I too live with on-going chronic conditions like chronic fatigue, chronic pain, insomnia, anxiety & depression. I'm sure I might find some understanding and empathy here as isolation has been my best friend for so long. I definitely can relate with feeling like I've been a ground breaker for the medical field. I was my doctors first cancer patient as I was miss-diagnosed for 7 months and was given 3 months to live when I finally was diagnosed in 1991. But he has saved allot of people since then because of me. I was never told that if I lived through the transplant that I would have so many chronic conditions that would plague me for the rest of my life. I gotta be honest, don't think I would have done it if I knew. I'm not trying to be negative, but it has been hard to say the least. Both my parents say they would never go through what they saw me go through. I couldn't watch my kids go through it, although I here the treatment is better these days. Thanks for sharing some of your journey.

    TJ

    I didn't have to have bone
    I didn't have to have bone marrow transplant but it was talked about. I have the chronic pain, anxiety, depression and understand the total isolation. The doctors told me that the chemo and radiation affected my spine and it has caused me to have had 8 back surgeries and I have to live with that as well as the cancer that plaques my life. I really hope that this find you still doing well look at it in a positive way at least you don't have to go through menopause it sucks lol. I really do wish you the best with your journey. Remember life is what we make it and I need to make some improvements with my self an let other people near also.

    Tina
  • miss maggie
    miss maggie Member Posts: 929

    Life after Hodgkins
    Just found this site today. I was diagnosed in 2007 six months prior to that I was tramatized 3 weekends back to back and they say that is what triggered my Hodgkins. I think I am going through menopause right now. Last year I started having problems with my back and had 6 back surgeries and 2 more this year. When I was diagnosed in 2007 I was married and well my marriage ended because he couldn't handle it but really he was cheating. But God gave me the strength to fight for my life. I went through 6months of chemo and 20 radiation treatments. My life was taken away from and every thing was destroyed. I have picked up the pieces it took me almost 4 years to do so. I struggle with keeping insurance and hanging on with my job so I have insurance. Now I have back problems on top of it and it is awlful. I am thankful that I am a live but what is my purpose. I have issues with the hot flashes waking up laying in a puddle of sweat and it scares me because I done that when I found out I had cancer. I can't hardly even afford to go to the doctor because of my insurance and its deductable. So what is one to do lol. My cancer doc tells me I am not taking it my cancer serious but I can afford my PET scan that is due in April. Out of work on medical leave due to my back surgeries and I have to fight to pay medical how to you afford to go to doctor.

    Tina

    Not Fair
    Dear Tina,

    I am so sorry for all the grief you have endured. Especially that husband of yours.
    It does no good to hang onto anger. The most important thing is for you to take care
    of yourself. How sad it took 4 years to pull yourself together. I can understand considering
    all you've been through. I believe in Karma. Someday it will catch up with your hubby. EX hubby.

    Tina where do you live? Do you live in a city? I don't live in the city, but. Most cities
    have wonderful city hospitals that will treat you. The hospital would assign you a social
    worker that could help you. Perhaps give you info on applying for medicaid. Even the
    richest suburbs have medicaid. I am sure where I live there are people out of work, who can't
    afford Cobra, are applying for medicaid.

    Get in touch with Town Hall where you live. Find out what is available to you. You just
    might qualify also for food stamps and help with rent. Even if you live home with your
    parent's now, Human Resources will help you.

    Please check what is available for you. Good luck and keep up posted.

    Love Maggie