NED or in remission?

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JanJan63
JanJan63 Member Posts: 2,478 Member

What's the difference? The few times that I share with someone that I had cancer I'm never sure what to say. I say I had cancer last year. Do I say I'm in remission? Or that it's gone? People are always curious and I'm not sure that I'm saying what's really happening.

Is it ever really gone? If I get tests and it's back did it return or just got bad enough they can detect it?

Thanks!

Jan

Comments

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    Ned is for horses

    People don't understand NED. I think thats a term that we, as Cancer patients, use.

    I tell people I am in remission or just that I have Cancer but I am doing well. I never tell them the Cancer is gone. I can't get my mouth around it. It is almost like I am tempting providence if I say that.

    I figure at Stage IV I have Cancer, and thats what I tell people. 

    Sue - Trubrit

  • Helen321
    Helen321 Member Posts: 1,459 Member
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    I'm two years out and I say I

    I'm two years out and I say I BEAT CANCER but realistically I think the 5 year marker is when you can say cured.  I tell people my treatment is over and I beat it=)

  • DD3
    DD3 Member Posts: 136 Member
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    Trubrit said:

    Ned is for horses

    People don't understand NED. I think thats a term that we, as Cancer patients, use.

    I tell people I am in remission or just that I have Cancer but I am doing well. I never tell them the Cancer is gone. I can't get my mouth around it. It is almost like I am tempting providence if I say that.

    I figure at Stage IV I have Cancer, and thats what I tell people. 

    Sue - Trubrit

    What

    Sue said.  NED is a cancer patient and cargivers term for the most part.  My wife tells people she is a cancer survivor and has moved on and done with it. 

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
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    Helen321 said:

    I'm two years out and I say I

    I'm two years out and I say I BEAT CANCER but realistically I think the 5 year marker is when you can say cured.  I tell people my treatment is over and I beat it=)

    I'm almost scared to say I

    I'm almost scared to say I beat it and tempt fate.

    Jan

  • PhillieG
    PhillieG Member Posts: 4,866 Member
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    Tomayto/Tomahto

    I have yet to cross that bridge but to me it's all semantics.
    If/when people ask "how am I doing?" I just say 'feeling fine' if that's how I'm feeling. 

  • danker
    danker Member Posts: 1,276 Member
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    PhillieG said:

    Tomayto/Tomahto

    I have yet to cross that bridge but to me it's all semantics.
    If/when people ask "how am I doing?" I just say 'feeling fine' if that's how I'm feeling. 

    NED

    I just say that i'ma cancer survivor!

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
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    danker said:

    NED

    I just say that i'ma cancer survivor!

    Thank you both!

    Thank you both!

  • Cazz
    Cazz Member Posts: 106
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    JanJan63 said:

    Thank you both!

    Thank you both!

    Congratulations

    I don't care what they call it, NED, Remission, No Cancer, whatever, I would just love to hear or see the words.  It has only been a year since diagnosis but the way things have been going I don't think I'll ever have that pleasure.  I'm just so glad that there are some people out there who seem to be beating this monstrous beast, you must be both mentally and physically strong.

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
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    Cazz said:

    Congratulations

    I don't care what they call it, NED, Remission, No Cancer, whatever, I would just love to hear or see the words.  It has only been a year since diagnosis but the way things have been going I don't think I'll ever have that pleasure.  I'm just so glad that there are some people out there who seem to be beating this monstrous beast, you must be both mentally and physically strong.

    Cazz, I hope we all get to

    Cazz, I hope we all get to see it at some point. I wish it for everyone. The last colonoscopy I had showed no cancer as did the last ct scan but I have another scan coming up in August and it will tell me if it has come back or progressed. I thought I had one on Friday and went to the hospital and found out it's next month, sheesh, I felt stupid. So days of stress because when I have a test coming up it becomes real again. And I worry because I didn't have symptoms the first time so it could be back without me suspecting. I hate the way this is sometihng we will always have to live with, even once we're NED for five years. Will it come back and, if it does, will it be even worse.

    I feel fortunate because I see people on here with mets and other issues and I haven't had to deal with that. On the other hand I was hospitalized twice shortly after my cancer surgery for abcesses at the site of the resection and had a terrible time when my incision got an infection underneath the surface that ate away under there so I had to have it packed until it finally healed which was excrutiating. Then in December I had a blood clot that went to my lung that almost killed me. They say it's from the surgery six months before but I think it was from the chemo I was going through at the time. The blood clot and subsequent five cardiac arrests, kidney failure, brain bleed and swelling, and stroke left me paralyzed and I've only been home from the hospital since the end of March and have been walking since then. First with assistance and now on my own. I'm even riding my horse again although not for long and I have to have my daughter put my saddle on because I'm still too weak to lift it. Not bad for someone whose family was told I shouldn't be revived because I'd probably never be the same mentally and could even be without any brain function at all. At minimum I wasn't expected to know my husband and daughter and was expected to never walk again.

    So that kind of put the cancer in the shadow of what I've been battling, which is to be normal again and live whatever life I have to the best of my ability. There are things I still can't do such as carrying anything up or downstairs if it takes both hands as I need to steady myself but I'm expecting that at some point in the next few months I'll be able to do that, too.

    I guess my point is that we all have our own battles and I don't know how much is strength, how much is how we live such as eating properly and exercising, or how much is just sheer luck. My survival of the blood clot is a blessing to me. Two of the ICU doctors told me I'd received a miracle and one said there was no medical explanation for my survival. My odds were given as one in a thousand for ever coming fully back from it but I did. Why did I get that lucky? I don't know. I'm just glad I did.

    Jan 

     

  • ron50
    ron50 Member Posts: 1,723 Member
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    I am cured

     Of the tumour that I had. At nearly 17 years post that cancer there is very little chance of recurrence BUT cancer is a strange beast. Our immune systems actually do a pretty good job at beating cancer and it takes a series of things to go wrong before our defences are overwhelmed. Once we have been subject to that series of things going wrong it appears we are fair game to new cancers occuring. What that means is that we must be constantly vigilant. We don't put off that scope ,we don't ignore that pain that never goes way but gradually gets worse ,we dont ignore the red on the toilet paper. We see the doctor to get everything checked on a regular basis. We don't accept" Ï don't think it is anything serious" . Once we take full resposibility for our own health and that of our families and ask for second opinnions for annything that has not been accounted for to our satisfaction, only then have we begun to do enough to promote our survival. Cancer loves us to stick our heads in the sand , please don't ever give it a second chance. Ron. Hugs to all.

  • Cazz
    Cazz Member Posts: 106
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    JanJan63 said:

    Cazz, I hope we all get to

    Cazz, I hope we all get to see it at some point. I wish it for everyone. The last colonoscopy I had showed no cancer as did the last ct scan but I have another scan coming up in August and it will tell me if it has come back or progressed. I thought I had one on Friday and went to the hospital and found out it's next month, sheesh, I felt stupid. So days of stress because when I have a test coming up it becomes real again. And I worry because I didn't have symptoms the first time so it could be back without me suspecting. I hate the way this is sometihng we will always have to live with, even once we're NED for five years. Will it come back and, if it does, will it be even worse.

    I feel fortunate because I see people on here with mets and other issues and I haven't had to deal with that. On the other hand I was hospitalized twice shortly after my cancer surgery for abcesses at the site of the resection and had a terrible time when my incision got an infection underneath the surface that ate away under there so I had to have it packed until it finally healed which was excrutiating. Then in December I had a blood clot that went to my lung that almost killed me. They say it's from the surgery six months before but I think it was from the chemo I was going through at the time. The blood clot and subsequent five cardiac arrests, kidney failure, brain bleed and swelling, and stroke left me paralyzed and I've only been home from the hospital since the end of March and have been walking since then. First with assistance and now on my own. I'm even riding my horse again although not for long and I have to have my daughter put my saddle on because I'm still too weak to lift it. Not bad for someone whose family was told I shouldn't be revived because I'd probably never be the same mentally and could even be without any brain function at all. At minimum I wasn't expected to know my husband and daughter and was expected to never walk again.

    So that kind of put the cancer in the shadow of what I've been battling, which is to be normal again and live whatever life I have to the best of my ability. There are things I still can't do such as carrying anything up or downstairs if it takes both hands as I need to steady myself but I'm expecting that at some point in the next few months I'll be able to do that, too.

    I guess my point is that we all have our own battles and I don't know how much is strength, how much is how we live such as eating properly and exercising, or how much is just sheer luck. My survival of the blood clot is a blessing to me. Two of the ICU doctors told me I'd received a miracle and one said there was no medical explanation for my survival. My odds were given as one in a thousand for ever coming fully back from it but I did. Why did I get that lucky? I don't know. I'm just glad I did.

    Jan 

     

    Yikes!

    Wow, Jan, I am so sorry that you had to go through all that, and so amazed that you not only survived, but seem to be making a great come back and it does make me wonder now about my Health Care Directive that says "do not resuscitate, if likely to be a vegetable and/or not survive another three months"!  Good job you didn't have that or you would not have had the opportunity to show those doctors just how wrong they can be!  Congratulations on your phenomenal survival and obviously amazing strength of will.

    Your reply really opened my eyes and made me feel ashamed of myself for being such a whiner.  I tend to think that us Stage IV's are so much worse off than everyone else, but even the most "curable" people have to go through the surgery and/or chemo and radiation as well - often with horrific consequences, though usually not quite as bad as yours and most, if not all, have to live with that Sword of Damocles of possible recurrence hanging over our heads.  In a nutshell, it totally sucks for all of us!

    I am in awe of some of the people and stories I read on these forums and wonder if I will have the strength (or the chance) to endure round after round of chemo and experimental treatments that may work a little bit or not at all, always of course hoping that I will be in the 1-5% who will have spectacular results and go into long term remission.

    I am so glad that you have beaten back the cancer, although at such a cost, and pray that your August scan also comes back clean so that you can concentrate on getting back to full strength and hefting those saddles up onto your horse on your own again.

    Carol

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
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    ron50 said:

    I am cured

     Of the tumour that I had. At nearly 17 years post that cancer there is very little chance of recurrence BUT cancer is a strange beast. Our immune systems actually do a pretty good job at beating cancer and it takes a series of things to go wrong before our defences are overwhelmed. Once we have been subject to that series of things going wrong it appears we are fair game to new cancers occuring. What that means is that we must be constantly vigilant. We don't put off that scope ,we don't ignore that pain that never goes way but gradually gets worse ,we dont ignore the red on the toilet paper. We see the doctor to get everything checked on a regular basis. We don't accept" Ï don't think it is anything serious" . Once we take full resposibility for our own health and that of our families and ask for second opinnions for annything that has not been accounted for to our satisfaction, only then have we begun to do enough to promote our survival. Cancer loves us to stick our heads in the sand , please don't ever give it a second chance. Ron. Hugs to all.

    Carol, please don't call

    Carol, please don't call yourself a whiner or be ashamed about how you feel. That wasn't my intent and we all have to deal with the emotions of this in our own way. And all of our roads are travelled differently and are different to start with. I felt bad after I posted that because I felt like I was being a whiner or was tryng to make things about me like 'oh yeah? Well here's what I went through", which as not what I meant at all. I tend to not talk much about my path with this but we're having finanical issues because of me not being able to work and I'm really stressed about that right now and I kind f unloaded and I'm very sorry if it sounded like I was trying to diminish how you felt.

    I think it's funny when people say I'm strong or tough because I'm not any more than anyone else. Things come up and you just do them, you don't really have a choice. Is that being tough or just doing what we have to do? I don't think people for whom this is a short battle and do not make it are any less tough than the rest of us. We just do what we have to do. And they likely have mitigating factors such as other health issues or a late diagnosis. For example my brother passed from cancer of the esophagus earlier this year, on Easter Sunday, and he'd have survived longer if he had been able to have surgery but he wasn't a candidate due to COPD and a large hernia. He also couldn't have chemo due to a heart issue.

    Anyway, Carol, I hope the best for you and Ron, I'm thrilled to hear your situation. And I'll mention my grandmother again as I have in the past who had colon cancer in the 1950's when she was in her fifties but passed in her early eighties and never had a recurrence. She had surgery to remove it and give her a colostomy but no chemo.

    Jan

  • BillO60
    BillO60 Member Posts: 72
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    JanJan63 said:

    Cazz, I hope we all get to

    Cazz, I hope we all get to see it at some point. I wish it for everyone. The last colonoscopy I had showed no cancer as did the last ct scan but I have another scan coming up in August and it will tell me if it has come back or progressed. I thought I had one on Friday and went to the hospital and found out it's next month, sheesh, I felt stupid. So days of stress because when I have a test coming up it becomes real again. And I worry because I didn't have symptoms the first time so it could be back without me suspecting. I hate the way this is sometihng we will always have to live with, even once we're NED for five years. Will it come back and, if it does, will it be even worse.

    I feel fortunate because I see people on here with mets and other issues and I haven't had to deal with that. On the other hand I was hospitalized twice shortly after my cancer surgery for abcesses at the site of the resection and had a terrible time when my incision got an infection underneath the surface that ate away under there so I had to have it packed until it finally healed which was excrutiating. Then in December I had a blood clot that went to my lung that almost killed me. They say it's from the surgery six months before but I think it was from the chemo I was going through at the time. The blood clot and subsequent five cardiac arrests, kidney failure, brain bleed and swelling, and stroke left me paralyzed and I've only been home from the hospital since the end of March and have been walking since then. First with assistance and now on my own. I'm even riding my horse again although not for long and I have to have my daughter put my saddle on because I'm still too weak to lift it. Not bad for someone whose family was told I shouldn't be revived because I'd probably never be the same mentally and could even be without any brain function at all. At minimum I wasn't expected to know my husband and daughter and was expected to never walk again.

    So that kind of put the cancer in the shadow of what I've been battling, which is to be normal again and live whatever life I have to the best of my ability. There are things I still can't do such as carrying anything up or downstairs if it takes both hands as I need to steady myself but I'm expecting that at some point in the next few months I'll be able to do that, too.

    I guess my point is that we all have our own battles and I don't know how much is strength, how much is how we live such as eating properly and exercising, or how much is just sheer luck. My survival of the blood clot is a blessing to me. Two of the ICU doctors told me I'd received a miracle and one said there was no medical explanation for my survival. My odds were given as one in a thousand for ever coming fully back from it but I did. Why did I get that lucky? I don't know. I'm just glad I did.

    Jan 

     

    What doesn't kill you makes you stronger?

    Or so the saying goes. That's an amazing story of surviving and beating whatever "odds" the doctors assigned to your condition and chances for recovery. I think people, doctors included, underestimate how hard the human body can fight to stay alive (cancer, notwithstanding).  In the immortal words of Hans Solo, "Don't tell me the odds" because in so many cases they don't matter. I think it comes down to a mix of "strength, eating properly and exercising, and sheer luck", and no one can say which one of those is more important than another.

    What I take away from your story is not just that you went through so many bad things (which I truly wish you hadn't) but that you survived all of them and are still moving forward.

    Congratulations and I wish you continued recovery and health.

    • Regarding NED - I take the term literally to mean "No Evidence" of disease or that tests don't show any cancer activity.
    • Remission to me means that there may or may not be evidence of cancer but it is not active.

    It's semantics.  I want to live long enough to see the term  "cancer" become an unused and obsolete word only used in the footnotes in medical history textbooks. (Since I'm 60 that would mean in the next 30 or 40 years, but sooner rather than later!).

    As for me, whenever someone asks how I'm doing I just say I'm in the peak of health for my age, hair color, height, condition, and weight. They usually stop listening after "hair color".

    Bill

     

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
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    BillO60 said:

    What doesn't kill you makes you stronger?

    Or so the saying goes. That's an amazing story of surviving and beating whatever "odds" the doctors assigned to your condition and chances for recovery. I think people, doctors included, underestimate how hard the human body can fight to stay alive (cancer, notwithstanding).  In the immortal words of Hans Solo, "Don't tell me the odds" because in so many cases they don't matter. I think it comes down to a mix of "strength, eating properly and exercising, and sheer luck", and no one can say which one of those is more important than another.

    What I take away from your story is not just that you went through so many bad things (which I truly wish you hadn't) but that you survived all of them and are still moving forward.

    Congratulations and I wish you continued recovery and health.

    • Regarding NED - I take the term literally to mean "No Evidence" of disease or that tests don't show any cancer activity.
    • Remission to me means that there may or may not be evidence of cancer but it is not active.

    It's semantics.  I want to live long enough to see the term  "cancer" become an unused and obsolete word only used in the footnotes in medical history textbooks. (Since I'm 60 that would mean in the next 30 or 40 years, but sooner rather than later!).

    As for me, whenever someone asks how I'm doing I just say I'm in the peak of health for my age, hair color, height, condition, and weight. They usually stop listening after "hair color".

    Bill

     

    Bill, we need a 'like' button

    Bill, we need a 'like' button on here. I'd 'like' your post. Thanks.

  • BillO60
    BillO60 Member Posts: 72
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    Cazz said:

    Yikes!

    Wow, Jan, I am so sorry that you had to go through all that, and so amazed that you not only survived, but seem to be making a great come back and it does make me wonder now about my Health Care Directive that says "do not resuscitate, if likely to be a vegetable and/or not survive another three months"!  Good job you didn't have that or you would not have had the opportunity to show those doctors just how wrong they can be!  Congratulations on your phenomenal survival and obviously amazing strength of will.

    Your reply really opened my eyes and made me feel ashamed of myself for being such a whiner.  I tend to think that us Stage IV's are so much worse off than everyone else, but even the most "curable" people have to go through the surgery and/or chemo and radiation as well - often with horrific consequences, though usually not quite as bad as yours and most, if not all, have to live with that Sword of Damocles of possible recurrence hanging over our heads.  In a nutshell, it totally sucks for all of us!

    I am in awe of some of the people and stories I read on these forums and wonder if I will have the strength (or the chance) to endure round after round of chemo and experimental treatments that may work a little bit or not at all, always of course hoping that I will be in the 1-5% who will have spectacular results and go into long term remission.

    I am so glad that you have beaten back the cancer, although at such a cost, and pray that your August scan also comes back clean so that you can concentrate on getting back to full strength and hefting those saddles up onto your horse on your own again.

    Carol

    People with the "C" diagnosis should get a "Whining" license

    If I couldn't vent once in awhile I'd probably explode. I don't think the word "whine" applies in these discussion boards since it implies that what is being discussed is trivial. Nothing, in my opinion, that people with cancer and those who are taking care of them is trivial (sometimes intentionally humorous but never trivial).  So I choose to use the word "vent" (even if I occasstionally vent with a high, shrill, whiney tone of voice).

    I was in healthcare many, many, many, years ago and while I worked on various units I spent most of that "career" working on med/surg units. Patients with the same diagnosis and conditions could have major differences in how they tolerated procedures, how much pain medication they needed, how quickly they recovered, and how they responded to treatment.  Point is, everyone is different and have different thresholds and tolerances. That didn't make one patient better or stronger than another it just made them different.

    Whatever a patient felt was real to them and had to be dealt with.  Comparisons between one patient and another was never considered when treating an individual patient

    One of the reasons comparisons can't be made between one patient and another is because the brain tends to take whatever is going on and turn it into a "big deal". For example, stress over not having a job was a "big deal" for me a couple years ago but is now in the background while cancer has taken center stage.  But, if I were to get up in the middle of the night and stub my toe that would become a "big deal" for as long as the pain was there and I'd probably be "venting" pretty loudly while it hurt.

    Talking about situations, family, feelings, etc. is a way to cope. Having people that will listen, and especially those who can relate to your situation, can be a powerful stress reliever and that can help the healing process.

    In my opinion, venting is healthy and necessary and just as important as exercise, eating right, healthy optimism, and all of the other things that help to keep you balanced.

    Bill

  • marbleotis
    marbleotis Member Posts: 720 Member
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    It is all in a name

    I honestly do not think anyone would understand these terms unless they or a family member had cancer.

    I prefer to think of myself as a cancer survivor that is currently 3 years and 6 months NED.

    Refer to yourself in the way that works for you.

  • thingy45
    thingy45 Member Posts: 632 Member
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    It is all in a name

    I honestly do not think anyone would understand these terms unless they or a family member had cancer.

    I prefer to think of myself as a cancer survivor that is currently 3 years and 6 months NED.

    Refer to yourself in the way that works for you.

    Living with it

    indeed, I'm living with it. Yes I have been. NED for 4 years, I'm still stage III, nothing can change that. cEA stays around 1.2. No more colonoscopies or  CT scans, it scares me, because as Ron says, stay vigilant. It just means it might return in another form. I'm still dealing with bathroom issues. Going out for dinner , I like to stay close to a bathroom for at least 2 hours after. Traveling has the same problems.  BUT I'm NED, I still live with it everyday.

    so my motto is, enjoy every day and live one day at a time. Love and hugs to all of you my Collon friends

  • hippiechicks
    hippiechicks Member Posts: 509 Member
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    JanJan63 said:

    Bill, we need a 'like' button

    Bill, we need a 'like' button on here. I'd 'like' your post. Thanks.

    Ditto that!  Very well

    Ditto that! 

    BillO60 ...

    Very well written post and true insight of how things make us tic ... I look back and say the same thing "I can't believe I really thought THAT was a big deal"

    I am amazed every time I come to this forum and read stories from such amazingly strong people fighting and beating odds every single day ... It really is inspiring

     

  • hippiechicks
    hippiechicks Member Posts: 509 Member
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    JanJan63 said:

    Cazz, I hope we all get to

    Cazz, I hope we all get to see it at some point. I wish it for everyone. The last colonoscopy I had showed no cancer as did the last ct scan but I have another scan coming up in August and it will tell me if it has come back or progressed. I thought I had one on Friday and went to the hospital and found out it's next month, sheesh, I felt stupid. So days of stress because when I have a test coming up it becomes real again. And I worry because I didn't have symptoms the first time so it could be back without me suspecting. I hate the way this is sometihng we will always have to live with, even once we're NED for five years. Will it come back and, if it does, will it be even worse.

    I feel fortunate because I see people on here with mets and other issues and I haven't had to deal with that. On the other hand I was hospitalized twice shortly after my cancer surgery for abcesses at the site of the resection and had a terrible time when my incision got an infection underneath the surface that ate away under there so I had to have it packed until it finally healed which was excrutiating. Then in December I had a blood clot that went to my lung that almost killed me. They say it's from the surgery six months before but I think it was from the chemo I was going through at the time. The blood clot and subsequent five cardiac arrests, kidney failure, brain bleed and swelling, and stroke left me paralyzed and I've only been home from the hospital since the end of March and have been walking since then. First with assistance and now on my own. I'm even riding my horse again although not for long and I have to have my daughter put my saddle on because I'm still too weak to lift it. Not bad for someone whose family was told I shouldn't be revived because I'd probably never be the same mentally and could even be without any brain function at all. At minimum I wasn't expected to know my husband and daughter and was expected to never walk again.

    So that kind of put the cancer in the shadow of what I've been battling, which is to be normal again and live whatever life I have to the best of my ability. There are things I still can't do such as carrying anything up or downstairs if it takes both hands as I need to steady myself but I'm expecting that at some point in the next few months I'll be able to do that, too.

    I guess my point is that we all have our own battles and I don't know how much is strength, how much is how we live such as eating properly and exercising, or how much is just sheer luck. My survival of the blood clot is a blessing to me. Two of the ICU doctors told me I'd received a miracle and one said there was no medical explanation for my survival. My odds were given as one in a thousand for ever coming fully back from it but I did. Why did I get that lucky? I don't know. I'm just glad I did.

    Jan 

     

    That is simply amazing ...

    JanJan63

    That is simply amazing ... thank you for sharing this story .. you certainly have put my mind in a different perspective today. 

    There is simply nothing better than to hear people, such as yourself, overcome such incredible circumstances and move forward to a place of enjoying life.

    Kuddos!! I hope you continue to ride for many years to come!