Just some thoughts running through my head at 4 am. Can't sleep, due to go to work soon.
The other day I was talking to a work colleague who recently had a near death experience. We compared notes on how we are handling things mentally.
He asked me how it is all going for me. I found myself saying all good. My last specialist appointment was all positives. The doc expects me to be stable for five years plus ... Good news right?
Then my next comment even shocked me. I said, I'm a little disappointed, I thought I would be dead in less then five years.
Now, that comment was said a little tongue in cheek, and I do have a dry sense of humor. We laughed and moved on.
But as I drove home that afternoon listening to the news on the radio of all the bad things that are happening right now, I thought I really am a little disappointed to be here for five more years.
I guess when I was first diagnosed everything I read suggested five years was the going rate for survival. And I don't know about anyone else, but I think I mourned for myself, then just accepted it. Then to be told I should last a bit longer ... I suppose it threw me.
Anyone else know what I am talking about, or is it just me and am I mad? LOL
Thanks Vicki
Forums
Re: Am I mad?
Vic,
You are definitely not mad! With all of the crazy things going on in the world, and having to cope with a life-limiting illness to boot, especially at your age, it can be overwhelming.
Don't beat yourself up on this. Some days it may seem easier to take the quicker way out ...
You are definitely not mad! With all of the crazy things going on in the world, and having to cope with a life-limiting illness to boot, especially at your age, it can be overwhelming.
Don't beat yourself up on this. Some days it may seem easier to take the quicker way out ...
Re: Am I mad?
Hello Vicki:
I found your post very creative. It reminded of a comment from several of my grammar school teachers (that I have heard occasionally since then): The line between genius and insanity is very, very thin.
If you never got such ideas, then that would be more insane!! Best of luck to you. Regards, JPC
I found your post very creative. It reminded of a comment from several of my grammar school teachers (that I have heard occasionally since then): The line between genius and insanity is very, very thin.
If you never got such ideas, then that would be more insane!! Best of luck to you. Regards, JPC
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JPC - Name: JPC
Re: Am I mad?
Hi Vicki,
There are no rules for how we are supposed to feel. I was in very bad shape when I was diagnosed and suffered several vertebral fractures, losing more than 2 inches in height. After about 4 months of heavy treatment, I discovered I was in a "very good partial remission" and I was practically disappointed. I had come to terms with my diagnosis, but not with living for years with my new "broken" body.
That was 6 years ago and, while I still don't like how short I am at the kitchen table, I have adjusted both my attitude and habits (I sit on a pillow now!). You will, too, but be gentle with yourself!
There are no rules for how we are supposed to feel. I was in very bad shape when I was diagnosed and suffered several vertebral fractures, losing more than 2 inches in height. After about 4 months of heavy treatment, I discovered I was in a "very good partial remission" and I was practically disappointed. I had come to terms with my diagnosis, but not with living for years with my new "broken" body.
That was 6 years ago and, while I still don't like how short I am at the kitchen table, I have adjusted both my attitude and habits (I sit on a pillow now!). You will, too, but be gentle with yourself!
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Dana - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Am I mad?
Not mad at all.
I was diagnosed three years ago with what the docs said was an aggressive form of high risk multiple myeloma. They hastened me through a bone marrow transplant, and onto Revlimid maintenance. I got a call from the transplant doc a month or so ago telling me that I was in 'complete remission,' still, two years post transplant.
Boy, was he excited ... almost giddy. It gave me a very weird feeling. Sure, I'm glad to be in remission and all that, but – now what? We have all those side effects to deal with, and we got ourselves ready to go, but at the same time I kept humming that song from Pirates of Penzance, where the policemen were singing and dancing about going after the pirates.
Their singing and dancing got on the nerves of the townsfolk, so that the refrain goes:
(police) We go we go! ...
(townspeople) Yes ... but you DON'T go!
It's sometimes a bit like standing on winter ice, knowing that it is going to melt, but the cold is lasting longer than usual, so you don't really know when.
I don't obsess about it, and it's a good thing: I actually feel very blessed, most of the time! After all, I have an MA to finish up and then a doctorate to get, but every once in awhile I get that 'c'mon, give me a hint?" feeling.
I was diagnosed three years ago with what the docs said was an aggressive form of high risk multiple myeloma. They hastened me through a bone marrow transplant, and onto Revlimid maintenance. I got a call from the transplant doc a month or so ago telling me that I was in 'complete remission,' still, two years post transplant.
Boy, was he excited ... almost giddy. It gave me a very weird feeling. Sure, I'm glad to be in remission and all that, but – now what? We have all those side effects to deal with, and we got ourselves ready to go, but at the same time I kept humming that song from Pirates of Penzance, where the policemen were singing and dancing about going after the pirates.
Their singing and dancing got on the nerves of the townsfolk, so that the refrain goes:
(police) We go we go! ...
(townspeople) Yes ... but you DON'T go!
It's sometimes a bit like standing on winter ice, knowing that it is going to melt, but the cold is lasting longer than usual, so you don't really know when.
I don't obsess about it, and it's a good thing: I actually feel very blessed, most of the time! After all, I have an MA to finish up and then a doctorate to get, but every once in awhile I get that 'c'mon, give me a hint?" feeling.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Am I mad?
Hi Vicki,
Absolutely understandable. And while not going too deep into issues that are not relevant here ... if you are not there tomorrow (or in 5 years), you will not know what is happening the day after ... life is not always easy, but curiosity keeps me going to bed in the evening and waking early the next morning. Life is a journey, and the journey is the reward ...
And although the news are not always good, try to look at them from a little bit of distance. Only 50 years ago many parts of Asia, including China and India, suffered from starvation. Now they are rising and have the fastest growing middle classes in the world. Many other regions are following. I believe that, although the situation is severe at many places in Africa, this continent is coming next.
And, you are probably thinking of Syria, Iraq, and Daesh. Yes, we have laid out some not so good seeds and are facing some of the consequences and the civilians are suffering terribly. In Sweden, just 30 km from here, 100.000 refugees have arrived already this year and my own country has taken a lot as well and Germany is taking maybe 1 million.
But I am always terribly optimistic. Previous generations faced terrible perils as well and somehow life goes on. Just wait, you need to know what is happening just around the corner. And in some months from now, spring is coming ... at least here in Scandinavia
Best regards
Lev
Sorry that I went a little bit of - or maybe on - topic.
Absolutely understandable. And while not going too deep into issues that are not relevant here ... if you are not there tomorrow (or in 5 years), you will not know what is happening the day after ... life is not always easy, but curiosity keeps me going to bed in the evening and waking early the next morning. Life is a journey, and the journey is the reward ...
And although the news are not always good, try to look at them from a little bit of distance. Only 50 years ago many parts of Asia, including China and India, suffered from starvation. Now they are rising and have the fastest growing middle classes in the world. Many other regions are following. I believe that, although the situation is severe at many places in Africa, this continent is coming next.
And, you are probably thinking of Syria, Iraq, and Daesh. Yes, we have laid out some not so good seeds and are facing some of the consequences and the civilians are suffering terribly. In Sweden, just 30 km from here, 100.000 refugees have arrived already this year and my own country has taken a lot as well and Germany is taking maybe 1 million.
But I am always terribly optimistic. Previous generations faced terrible perils as well and somehow life goes on. Just wait, you need to know what is happening just around the corner. And in some months from now, spring is coming ... at least here in Scandinavia
Best regards
Lev
Sorry that I went a little bit of - or maybe on - topic.
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Am I mad?
I so understand. I have been investigating SCT, and I read words like "it can increase survivability by 2.5 years.: It is really hard to wrap my head around that. In my always-think-positive design, I am convinced a cure for this will happen, and I am right there in line to be cured.
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Mermaid - Name: Nanz
- When were you/they diagnosed?: 2015
- Age at diagnosis: 67
Re: Am I mad?
Please try to think more positive and forget about these numbers..
Those are all based on samples, statistics and probabilities.
Nobody knows when we will all depart this world, but it is happening whether we like it or not!
I have seen lots of healthy people, leave away without any notification or sign...On the other hand, I have seen extremely ill people stay alive for many years !!
Bottom line....don't think too much in this aspect...just enjoy the moment...think positive..do lots of Yoga..meditation...relaxation exercises..surround yourself with the ppl you love...do things you love to do...eat well..sleep well....don't think of the past...or future...just think of today and how to make it enjoyable..
I hope that helped!
Those are all based on samples, statistics and probabilities.
Nobody knows when we will all depart this world, but it is happening whether we like it or not!
I have seen lots of healthy people, leave away without any notification or sign...On the other hand, I have seen extremely ill people stay alive for many years !!
Bottom line....don't think too much in this aspect...just enjoy the moment...think positive..do lots of Yoga..meditation...relaxation exercises..surround yourself with the ppl you love...do things you love to do...eat well..sleep well....don't think of the past...or future...just think of today and how to make it enjoyable..
I hope that helped!
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KMZ - Who do you know with myeloma?: Mother
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 76
Re: Am I mad?
I reached a point, probably after the second transplant (2009), when I had to acknowledge that mentally I had spent much of the previous 6 years "getting my affairs in order". My wife, kids (6 and 11 when I was diagnosed in 2003), all I could think about was making sure they would be as okay as I could possibly make them.
But the days went by and it didn't happen. So I stopped getting ready to move on, and just 'deal with the friction of the day'.
Allen
But the days went by and it didn't happen. So I stopped getting ready to move on, and just 'deal with the friction of the day'.
Allen
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allenbonslett - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 12/2003
- Age at diagnosis: 43
Re: Am I mad?
Thanks for your replies.
So still unclear if I am Mad or not.. He he.
Dana - The pillow sounds like a good idea and quite right adjustments are a necessity. I like the pillow idea as when I get fatigued it can be a comfy place to lay my head as well as a booster.
I hadn't given it much thought but you are right perhaps it is the on going life with a broken body that I have not accepted yet. Thanks for your thoughts.
Lev - Yes indeed way too big and not for this forum. Just for the record I am happy to keep on with the journey and like you curiosity keeps me interested. I suppose it is a sign of returned normality that I can actually give a damn about what's going on in the world outside of myself.
After being diagnosed every thing was about me. I feel I have turned a corner. Strange....Thanks for understanding Lev. It is summer in Oz. Getting warm indeed.
JPC - So am I a Genius then?
Ellen - I am not beating myself up. Just trying to understand myself. So glad I am not mad though.. Thankyou. hehe.
KMZ - totally agree that when your time is up it is up. If I could live one day at a time I would. However it is not in my make up. I am something of a planner. WIth young kids you have to be. As for the stats i don't take too much notice now. But when you first get diagnosed and are lacking in info, that's what I picked up.
Allen - Dealing with the friction of the day. What a pleasure huh! I think I too have spent the last two years preparing. Getting affairs in order. Perhaps that is exactly what i need to do. Stop getting ready to move on and remember to live.. Thank you.
Mermaid - A cure? bring it on
Diana - yes a crystal ball that works would be useful
I think I have to stop talking to normal people that way I will always be sane.
Just last night a fellow Karate mum burst into tears, I had my port flushed yesterday and she seen the bandage and asked me what I had etc etc. So I told her and she started crying. I'm like. What are you crying for? She said I can't imagine what you have been through. I said and hopefully you never will. But don't cry about it. I am not dying yet. This is why I try to keep this stuff to myself.
And why I air things on this site. "normal people" haven't got a clue.
Anyway That's All
Thanks again Vicki
So still unclear if I am Mad or not.. He he.
Dana - The pillow sounds like a good idea and quite right adjustments are a necessity. I like the pillow idea as when I get fatigued it can be a comfy place to lay my head as well as a booster.
I hadn't given it much thought but you are right perhaps it is the on going life with a broken body that I have not accepted yet. Thanks for your thoughts.
Lev - Yes indeed way too big and not for this forum. Just for the record I am happy to keep on with the journey and like you curiosity keeps me interested. I suppose it is a sign of returned normality that I can actually give a damn about what's going on in the world outside of myself.
After being diagnosed every thing was about me. I feel I have turned a corner. Strange....Thanks for understanding Lev. It is summer in Oz. Getting warm indeed.
JPC - So am I a Genius then?
Ellen - I am not beating myself up. Just trying to understand myself. So glad I am not mad though.. Thankyou. hehe.
KMZ - totally agree that when your time is up it is up. If I could live one day at a time I would. However it is not in my make up. I am something of a planner. WIth young kids you have to be. As for the stats i don't take too much notice now. But when you first get diagnosed and are lacking in info, that's what I picked up.
Allen - Dealing with the friction of the day. What a pleasure huh! I think I too have spent the last two years preparing. Getting affairs in order. Perhaps that is exactly what i need to do. Stop getting ready to move on and remember to live.. Thank you.
Mermaid - A cure? bring it on
Diana - yes a crystal ball that works would be useful
I think I have to stop talking to normal people that way I will always be sane.
Just last night a fellow Karate mum burst into tears, I had my port flushed yesterday and she seen the bandage and asked me what I had etc etc. So I told her and she started crying. I'm like. What are you crying for? She said I can't imagine what you have been through. I said and hopefully you never will. But don't cry about it. I am not dying yet. This is why I try to keep this stuff to myself.
And why I air things on this site. "normal people" haven't got a clue.
Anyway That's All
Thanks again Vicki
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
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