› Forums › General Melanoma Community › A really difficult time
- This topic has 18 replies, 8 voices, and was last updated 12 years, 7 months ago by
mygirlmaddy.
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- September 24, 2011 at 3:42 am
Hello to any one who reads this post.
I have been dealing with this disease since 1984. My worst time has been since 2005 when I was staged III A or B. I'm not sure because I have conflicting dr's notes. At this point I don't think it matters.
In the years that followed I have gone through several surgeries and tried High dose interferon therapy which did not work for me as I had a very bad reaction from the immune drugs.
Hello to any one who reads this post.
I have been dealing with this disease since 1984. My worst time has been since 2005 when I was staged III A or B. I'm not sure because I have conflicting dr's notes. At this point I don't think it matters.
In the years that followed I have gone through several surgeries and tried High dose interferon therapy which did not work for me as I had a very bad reaction from the immune drugs.
Last fall after getting out of the hospital for a serious heart problem, I was told I was cancer free….yeah, hurray!!!
Then my life really fell apart. My husband left me, we are going through a divorce and my adult children hardly talk to me because they want to be neutral regarding the divorce.
I live in a very cold place in the winter and barely got through, I ended up in the hopstial I believe 3 times.
Every time I go to my internal med doctor he says I look good, and I just need to be positive and keep going. I haven't had any body scans since last fall. I had one for my head because I fell down the stairs (one of my hospital stays).
So since my "cancer free" delcaration, I have heart problems, falling problems, rash and welt problems, chronic pain problems, but I still got around, however I have noticed I have lost a lot of weight and my strength isn't what it was just 3 months ago.
About 10 days ago, I got welts, both arms became swollen, I have a hard time going to the bathroom, and on one night I got up and I felt I was going to pass out, this has happend a couple more times since then.
I am eating when I have the strength to get up and fix myself something to eat.
I have new pain in the right side of my body where all of this stupid disease started. I am having a very difficult time taking care of myself.
I've been on and off this board over the years and I have read some pretty courageous things, but I think I am very tired of this disease and I think its back, and I think I'm going to let it take its course.
I am frightend about getting up, and having the heart problem and passing out or dying. Not so much the dying, but the lonliness and the fact that it would probably be days or weeks before anyone would say hey have your heard from her?
I'd like to say I do respect each and everyone's decisions on this board over the years, and I have seen great courage from those of you who ventured out and tried new things.
I'm tired of writing for right now and Wish you all good things and I'm going to try to do this every day, but the computer is upstairs and I' m not so good about being upstairs right now. I do pretty much all my living on the first floor and sleep on the couch.
So, thank you all for being an inspiration. And hopefully I'll write and converse with you again soon.
I decided to post this anonymous. However I am a Melanoma survivor of 27 years.
Peace be with you all, and hopefully the road to good health,
C
C
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- September 24, 2011 at 4:07 am
I am sorry to read of the difficult time that you have had. However, please be assured that there are good people in this forum who really care about you.
From this distance, I don't know what I can do to help but I will keep you in my thoughts and prayers if you would like me to do that.
Take care
Frank from Australia
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- September 24, 2011 at 4:07 am
I am sorry to read of the difficult time that you have had. However, please be assured that there are good people in this forum who really care about you.
From this distance, I don't know what I can do to help but I will keep you in my thoughts and prayers if you would like me to do that.
Take care
Frank from Australia
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- September 24, 2011 at 3:26 pm
I'm so very sorry you are feeling worn out from the fight. I don't think any of us blame you for wondering "why try".
Would it be possible for you to register with a local agency for the daily call to ensure you are ok? I can't remember the name of the program, but your local police department or senior center should know of the program.
They call daily, to older folks living alone, to make sure you are ok. If you don't answer, someone is sent to check on you. This would handle your worry that no one would find you for days, and probably make you feel a bit more safe, too.
It is your right to "do" or not do anything as far as melanoma (or any other health issues). I'm sorry your kids feel they should distance themselves to stay neutral. That must be sad and frustrating in the extreme.
While I'm sorry for your obvious pain and sadness, please know it gives ME great hope to see you are a 27 year survivor! I would love to be around in 27 years.
Praying for peace and freedom from pain and worry,
TracyLee
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- September 24, 2011 at 3:26 pm
I'm so very sorry you are feeling worn out from the fight. I don't think any of us blame you for wondering "why try".
Would it be possible for you to register with a local agency for the daily call to ensure you are ok? I can't remember the name of the program, but your local police department or senior center should know of the program.
They call daily, to older folks living alone, to make sure you are ok. If you don't answer, someone is sent to check on you. This would handle your worry that no one would find you for days, and probably make you feel a bit more safe, too.
It is your right to "do" or not do anything as far as melanoma (or any other health issues). I'm sorry your kids feel they should distance themselves to stay neutral. That must be sad and frustrating in the extreme.
While I'm sorry for your obvious pain and sadness, please know it gives ME great hope to see you are a 27 year survivor! I would love to be around in 27 years.
Praying for peace and freedom from pain and worry,
TracyLee
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- September 24, 2011 at 11:52 pm
Hi CKasper,
I responded to one of your posts before and feel compelled to respond now. First I want to say you are an inspiration to me (and many) being a 27 year survivor of melanoma.
Second, I can relate to you. In my almost 4 years of NED status I developed lymphedema in the right arm, have osteopenia (borderline osteoporosis), have 2 small tears in the tendons in my left shoulder ( probably from overuse) and I've had 2 cases of cellulitis (potentially severe bacterial infection below the skin) in the last 5 months. Sometimes I wonder what's next. I need to take it one day at a time.
No doubt many of these cancer drugs beat up on our bodies and make us more vulnerable to other things.
Knowing Jesus Christ's love for me and promise of life with Him after I leave this place is very comforting to me.
I pray for peace in your life also, especially His peace. I also pray for strength in your body and guidance to bring others to support you.
God Bless,
Jim M.
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- September 25, 2011 at 11:27 am
Hi CKasper,
I am not sure how old you are and what programs may be around for "checking" in on you or for services you may be eligible for…..so like someone posted previously, perhaps you can look into them so you arent so alone. I would also recommend talking with your doctor about depression, as you sound so discouraged and hopeless….maybe there are some treatments that would help you feel better, and cope better.
It also sounds like you have a variety of health issues, melanoma being one of them. It is easy for our minds to immediately go to the "ITS BACK" darkside when we have peculiar symptoms or symptoms occuring in the same general vicinity of where melanoma has occured before. But what we can all attest to on this board is that we do read where many times it is NOT melanoma. If it is back, there are many new and different treatments to try so dont give up there. Every treatment has the potential to buying us time.
I do think you have had many losses and many difficulties with your illness, your divorce, your adult children not talking with you…I would urge you to find a counselor or support group or minister/priest to confide in…..really this will help!
Please get that computer moved downstairs (by a friend) and keep coming back here. We DO care about you!! Please keep us posted and let us help support you.
Hugs,
Vermont_Donna, stage 3a, NED
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- September 26, 2011 at 1:16 am
we totally understand what you are going through…treatments are brutal and sometimes harmful…we understand the weariness. we understand the dark night of the soul
boots
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- September 26, 2011 at 9:25 am
Boots, there is quiet a story behind the expression the "dark night of the soul". See:
http://en.wikipedia.org/wiki/Dark_Night_of_the_Soul I think that this makes interesting
reading.Take care
Frank from Australia
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- September 26, 2011 at 9:25 am
Boots, there is quiet a story behind the expression the "dark night of the soul". See:
http://en.wikipedia.org/wiki/Dark_Night_of_the_Soul I think that this makes interesting
reading.Take care
Frank from Australia
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- September 26, 2011 at 1:16 am
we totally understand what you are going through…treatments are brutal and sometimes harmful…we understand the weariness. we understand the dark night of the soul
boots
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- September 25, 2011 at 11:27 am
Hi CKasper,
I am not sure how old you are and what programs may be around for "checking" in on you or for services you may be eligible for…..so like someone posted previously, perhaps you can look into them so you arent so alone. I would also recommend talking with your doctor about depression, as you sound so discouraged and hopeless….maybe there are some treatments that would help you feel better, and cope better.
It also sounds like you have a variety of health issues, melanoma being one of them. It is easy for our minds to immediately go to the "ITS BACK" darkside when we have peculiar symptoms or symptoms occuring in the same general vicinity of where melanoma has occured before. But what we can all attest to on this board is that we do read where many times it is NOT melanoma. If it is back, there are many new and different treatments to try so dont give up there. Every treatment has the potential to buying us time.
I do think you have had many losses and many difficulties with your illness, your divorce, your adult children not talking with you…I would urge you to find a counselor or support group or minister/priest to confide in…..really this will help!
Please get that computer moved downstairs (by a friend) and keep coming back here. We DO care about you!! Please keep us posted and let us help support you.
Hugs,
Vermont_Donna, stage 3a, NED
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- September 24, 2011 at 11:52 pm
Hi CKasper,
I responded to one of your posts before and feel compelled to respond now. First I want to say you are an inspiration to me (and many) being a 27 year survivor of melanoma.
Second, I can relate to you. In my almost 4 years of NED status I developed lymphedema in the right arm, have osteopenia (borderline osteoporosis), have 2 small tears in the tendons in my left shoulder ( probably from overuse) and I've had 2 cases of cellulitis (potentially severe bacterial infection below the skin) in the last 5 months. Sometimes I wonder what's next. I need to take it one day at a time.
No doubt many of these cancer drugs beat up on our bodies and make us more vulnerable to other things.
Knowing Jesus Christ's love for me and promise of life with Him after I leave this place is very comforting to me.
I pray for peace in your life also, especially His peace. I also pray for strength in your body and guidance to bring others to support you.
God Bless,
Jim M.
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- September 26, 2011 at 12:51 pm
Hi,
I am very sorry to read about your current state of mind. I believe in saying that if your mental health is good, then so is the body. Therefore, I suggest you to try to contact your children and re-build your relationships. I know that they love you, and you love them, and you shouldnt be apart in such a hard period. I really think that if you improve relationships with your children, a part of your pain will go away! Cuz a lot of deaseases occur just because of mental problems.
Emotional problems also explain your not-wanting to fight the melanoma. Once you get your mind back to 'normal' and 'stable', you`ll see how the desire to live will come back!
Wishing you all the best in reestablishing the most important things in your life!
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- September 26, 2011 at 12:51 pm
Hi,
I am very sorry to read about your current state of mind. I believe in saying that if your mental health is good, then so is the body. Therefore, I suggest you to try to contact your children and re-build your relationships. I know that they love you, and you love them, and you shouldnt be apart in such a hard period. I really think that if you improve relationships with your children, a part of your pain will go away! Cuz a lot of deaseases occur just because of mental problems.
Emotional problems also explain your not-wanting to fight the melanoma. Once you get your mind back to 'normal' and 'stable', you`ll see how the desire to live will come back!
Wishing you all the best in reestablishing the most important things in your life!
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- September 27, 2011 at 3:16 pm
I'm sorry you are feeling so alone. I can guarantee that if people near you knew your situation, you would find they would rise to the occasion. In the interest of getting some help, I'm sure there are hospice workers in your area. They not only provide medical support, but emotional as well. It would also give you the peace of mind that someone knows and cares about how you are doing.
I hope that you find the courage to tell your kids how you are feeling as well. They can't possibly know what you don't tell them.
Best wishes to you. I often tell my daughter, as we struggle through my husband and her father having stage IV melanoma, that she can choose to use this struggle as a reason to be angry or she can choose to be happy and live her life.
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- September 27, 2011 at 3:16 pm
I'm sorry you are feeling so alone. I can guarantee that if people near you knew your situation, you would find they would rise to the occasion. In the interest of getting some help, I'm sure there are hospice workers in your area. They not only provide medical support, but emotional as well. It would also give you the peace of mind that someone knows and cares about how you are doing.
I hope that you find the courage to tell your kids how you are feeling as well. They can't possibly know what you don't tell them.
Best wishes to you. I often tell my daughter, as we struggle through my husband and her father having stage IV melanoma, that she can choose to use this struggle as a reason to be angry or she can choose to be happy and live her life.
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