A different perspective on life now??

[Catnap]

I wouldn't say that things have been plain sailing since my TT a month ago, but in general I'd say all is going pretty well. I'm still adjusting to meds etc... but I'm starting to realise how much my perspective on life has changed with this weird experience. This whole new world of tests and doctors and surgery etc that I've experienced and will continue to experience. A few months ago this was not part of my world, would have seemed so scary back then. But now I just feel so incredibly lucky that the cancer I had appears to be so indolent and curable. I had a flash back the other week - walking my lovely son from a trip to the park and for icecream - to the day I heard I needed a biopsy. I was totally freaked out at even the hint of a hint of cancer intruding on my cosy life. Then the biopsy came back suspicious for papillary, but also mentioned medullary... and my life fell apart. I guess because I'd found a lump years ago (like 7 or 8) and it had been misdiagnosed I couldn't help my mind racing with horrifying thoughts of how it could have spread over that time. The next few weeks until my cancer was confirmed as a small encapsulated papillary tumour were the worst of my life by a long stretch. I really didn't think I was going to see my kids grow up.
And now i've had a small taste of this other world of cancer, tests, fear etc... and yet my prognosis is so good that prognosis is the wrong word, this has every chance of being a small blip in my life that could still go on for another 60 years, who knows maybe more. I know some friends look at my scar and feel sad or pity that this happened to me, but I feel like I won the health lottery. None of us have any idea what's around the corner and in some ways to be aware that everything could come crashing down at any time is making me appreciate the here and now so much more (but don't quote me when I complain about thyroid meds!!)
Sorry this has turned into a weird blog-type rant. I just wonder if other thyroid cancer survivors feel like this? I also have this weird nagging guilt that my cancer has been so easy, like i'm kind of a fraud, when most other people with cancer have to go through chemo and other treatments with uncertain outcomes. I realise it's silly to think like this, it's not a real or rational thought just a feeling I get sometimes. Like I'm in the middle of the health continuum - perfect health on one side, serious illness on the other.
I guess I'm just finding some stuff going on in my head since this whole cancer thing and none of my friends have had cancer so I don't really have anyone to share these thoughts with that would have any idea where I'm coming from :hugs:

[Andros]

I wouldn't say that things have been plain sailing since my TT a month ago, but in general I'd say all is going pretty well. I'm still adjusting to meds etc... but I'm starting to realise how much my perspective on life has changed with this weird experience. This whole new world of tests and doctors and surgery etc that I've experienced and will continue to experience. A few months ago this was not part of my world, would have seemed so scary back then. But now I just feel so incredibly lucky that the cancer I had appears to be so indolent and curable. I had a flash back the other week - walking my lovely son from a trip to the park and for icecream - to the day I heard I needed a biopsy. I was totally freaked out at even the hint of a hint of cancer intruding on my cosy life. Then the biopsy came back suspicious for papillary, but also mentioned medullary... and my life fell apart. I guess because I'd found a lump years ago (like 7 or 8) and it had been misdiagnosed I couldn't help my mind racing with horrifying thoughts of how it could have spread over that time. The next few weeks until my cancer was confirmed as a small encapsulated papillary tumour were the worst of my life by a long stretch. I really didn't think I was going to see my kids grow up.
And now i've had a small taste of this other world of cancer, tests, fear etc... and yet my prognosis is so good that prognosis is the wrong word, this has every chance of being a small blip in my life that could still go on for another 60 years, who knows maybe more. I know some friends look at my scar and feel sad or pity that this happened to me, but I feel like I won the health lottery. None of us have any idea what's around the corner and in some ways to be aware that everything could come crashing down at any time is making me appreciate the here and now so much more (but don't quote me when I complain about thyroid meds!!)
Sorry this has turned into a weird blog-type rant. I just wonder if other thyroid cancer survivors feel like this? I also have this weird nagging guilt that my cancer has been so easy, like i'm kind of a fraud, when most other people with cancer have to go through chemo and other treatments with uncertain outcomes. I realise it's silly to think like this, it's not a real or rational thought just a feeling I get sometimes. Like I'm in the middle of the health continuum - perfect health on one side, serious illness on the other.
I guess I'm just finding some stuff going on in my head since this whole cancer thing and none of my friends have had cancer so I don't really have anyone to share these thoughts with that would have any idea where I'm coming from :hugs:

Ah, yes! I like to refer to this as emotional maturation. We are to profit from our experiences. It is wonderful that you are examining your feelings and putting all your little ducks in a row.

This has been a traumatic experience and that is putting it mildly.

Listen to your inner self and follow your pathway; you will always know what it is.

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[Butterflyjkg]

The words that CatNap posted here were MY words.. My feelings.. MY situation pretty much. I feel like I want to just tell my whole story here... I want to just let it all OUT. Like I posted before, my experience was NOT of this world.. it was and it wasn't.
I have definite confirmation that we are NOT alone.. God DOES hear our prayers and he does work in our lives in mysterious and almost FUNNY ways. We lost my mom years ago to Thyroid cancer.. or we thought it was that that ULTIMATELY killed her but from the reactions that I have gotten from SEVERAL doctors, she had something " secondary". Whatever it was that REALLY killed her it was HORRIBLE and scarred each of us DEEPLY.

I, too, was "lucky" like you said. My dentist discovered that my neck looked " different' and so I had it checked. I had 3 little nodules. One of which was papillary cancer. .8 cm and fully encapsulated. I was told that it was nowhere else... I didn't need any treatment of any kind and I should " get ON with my life". EASIER said than done. That's like going into a restaurant and a gunman comes in....he wounds several people.. FEAR, TERROR, HELL.. and then he leaves. The police come and say " nothing else to see here, folks, head home. " You leave that restaurant and you will NEVER be the same.. you can't forget. You can't go back. You can't get the fear out of your mind and your soul. It's taken a part of you.

I was so severly shellshocked from my experience that turned out to be a "blip" as you called it that I just can't forget it.. I can't MOVE ON just like that. How could you?? I didn't have to have treatment and I feel VERY grateful.. almost like I didn't have it or something.. just like YOU said. Yet another part of me wants to scream to the universe WHY WHY WHY did this happen to me???!!! I do feel guilty for feeling scared....People keep saying you are LUCKY. .WOW.. just move on with your life!! Live your LIFE!!! Get ON with it girl!! Suck it up. Why are you feeling scared or bummed out?? I think it's a touch of post traumatic stress disorder. Just coming on this board takes me back to a very scary place. I don't know anyone who knows what I mean. This doesn't happen to ME. It happens to OTHER people. I DO feel grateful and blessed. More supernatural things happened to me than I can even believe, yet there is a voice in the back of my head that says.. " you aren't fine. They missed something.. it's there. .lurking... if your MOM didn't make it.. you won't either. You didn't even have TREATMENT..." I had a body scan that showed NOTHING. One way I feel like I should forget it and move on. I am SICK of hearing " well, if you are gonna get cancer.. thyroid is the kind you'd want!!" Oh really??? Tell that to my mom who wasn't so lucky. It's like it's somehow not as important..the psychological effects are horrible I think. Maybe it's me.

My husband get sick of hearing me.. or seeing me crying now and then. He says I need to MOVE ON.. I'm FINE. Is it ME?? I will never be FINE. I am trying my damnedest. Does that little voice in the back of your head ever go away? Or am I just freakin' nutz? My surgery was only about 6 weeks ago. I am on meds and I feel okay. I am lucky there I guess. I feel almost like my old self except for the hairballs of my hair that are blowin' around my house like the Old West. I know I dodged a bullet.. but my mind says "beware of that ricochet.. it's a *****."

I feel sorry for myself now and then. I want to turn back time. I don't want to be someone who had cancer. I know that NO ONE DOES. I am just saying how I feel. HOW would this happen to me? MOI???!!! Like it wouldn't dare strike twice in a family. As I type this my sister is awaiting a biopsy for a sizable solid breast lump. Surely, it wouldn't strike THREE times?????????!!!! I chuckle as I type that... if the universe wants it to strike it will.... I don't care HOW many times. I have learned that in the last few months.....You don't know JACK about Jack. You have NO control. It's how you behave that makes or breaks you. I also learned that when you think your life is stinky and boring and you can't take another DAY of the same old same old, the universe HEARS you and it gives you something to REALLY complain about. Just my two cents...

[Catnap]

Hi butterfly, I think we really are in a similar place physically and psychologically after this cancer. I'm about 8 weeks post surgery. I've had so many ups and downs... The euphoria of knowing I just had papillary and not medullary, that no further treatment likely etc, well that's wearing off and sometimes I just don't know how to be anymore. Like I'm moving on but not back to normal. I find myself obsessing. I forget that I had cancer and then it hits me. I'm lucky it was just papillary, but it's still cancer, I still had to go through that time when it looked like I could have medullary growing for 8 years. I don't want to forget that feeling as it's brought life into focus, but I want to move on but also I have to recognize that this has had a psychological affect. I tell people I'm fine, I'm lucky, so people think that means I'm back to normal, but I'm not. Everything has changed. I have these weepy days. I don't know if it's the meds or it's just the mental side effects of having cancer.
I'm trying to be good to myself and if I don't feel up to certain social situations or need to go to bed at 9pm that's ok. I think it might take us some time to accept what's happened and that although we're considered "cured" we'll still think and worry about the future. I think other people think we're cured like we had our tonsils out, it's not the same. No-one knows if they are 100% cured, i think we have to try and be positive and find a way to get on with our lives. I just haven't quite figured out yet how to do that!

[Butterflyjkg]

Hey CATNAP, how are you holding up?? You and I were in pretty much the same boat. Mine has sprung a tiny leak.. just tiny. I was wondering how you are feeling now on your meds for a while.. Did you post what meds you were on? I don't recall.

I don't feel horrible but not great. I have been totally stressing out over my hair that won't stay on my head. I have been very down. I only have little fear flashbacks now and then... I get in a panic and then I have to get a grip.

I had my labs done the other day.. TSH and T4 ONLY.. they were NORMAL.. so WHY do I feel like I am only a shadow of my former self?? Don't get me wrong, my "former self" wasn't any great prize , mind you.. :tongue0015:

I feel sort of like I am left out in the rain without my umbrella or something strange. I am having some major muscle twitching.. especially in my eyes and face..... I don't feel like I am dying or anything.. just a little bit poopy...

I don't know.. I guess I shouldn't complain at all. I am ALIVE after all and with a good prognosis.. I should just shut up I guess....

[cmaxwell1]

Hey CATNAP, how are you holding up?? You and I were in pretty much the same boat. Mine has sprung a tiny leak.. just tiny. I was wondering how you are feeling now on your meds for a while.. Did you post what meds you were on? I don't recall.

I don't feel horrible but not great. I have been totally stressing out over my hair that won't stay on my head. I have been very down. I only have little fear flashbacks now and then... I get in a panic and then I have to get a grip.

I had my labs done the other day.. TSH and T4 ONLY.. they were NORMAL.. so WHY do I feel like I am only a shadow of my former self?? Don't get me wrong, my "former self" wasn't any great prize , mind you.. :tongue0015:

I feel sort of like I am left out in the rain without my umbrella or something strange. I am having some major muscle twitching.. especially in my eyes and face..... I don't feel like I am dying or anything.. just a little bit poopy...

I don't know.. I guess I shouldn't complain at all. I am ALIVE after all and with a good prognosis.. I should just shut up I guess....

Have you considered antidepressants? You seem very low and perhaps not in a rational way thats gonna sort itself out
hugs1

[Andros]

Hey CATNAP, how are you holding up?? You and I were in pretty much the same boat. Mine has sprung a tiny leak.. just tiny. I was wondering how you are feeling now on your meds for a while.. Did you post what meds you were on? I don't recall.

I don't feel horrible but not great. I have been totally stressing out over my hair that won't stay on my head. I have been very down. I only have little fear flashbacks now and then... I get in a panic and then I have to get a grip.

I had my labs done the other day.. TSH and T4 ONLY.. they were NORMAL.. so WHY do I feel like I am only a shadow of my former self?? Don't get me wrong, my "former self" wasn't any great prize , mind you.. :tongue0015:

I feel sort of like I am left out in the rain without my umbrella or something strange. I am having some major muscle twitching.. especially in my eyes and face..... I don't feel like I am dying or anything.. just a little bit poopy...

I don't know.. I guess I shouldn't complain at all. I am ALIVE after all and with a good prognosis.. I should just shut up I guess....

What you have been through has been very stressful. For myself, I found counseling to be most helpful in putting my life back on track even better than before I became ill.

Just a thought and by the way,did you ever get that FERRITIN test I have been urging you to get?

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[JoJo]

Had my TT in July of last year. I am, today, completely losing it. So frustrated with the exhaustion. Guilt? PTSD?? Probably.. maybe I do need need counseling as well. I feel no matter what I do, it doesn't help and endo doesn't seem to care; he's testing only TSH. I'm on 125 of levothyroxine.. still. This is what I was put on one month BEFORE my surgery. Tested a couple weeks back TSH was 1.16. He says that's good. I thought after cancer they want it suppressed?

Your posts help me not feel so alone in this journey. Im afraid that I am losing my mind after all these months of keeping it together.

[Andros]

Had my TT in July of last year. I am, today, completely losing it. So frustrated with the exhaustion. Guilt? PTSD?? Probably.. maybe I do need need counseling as well. I feel no matter what I do, it doesn't help and endo doesn't seem to care; he's testing only TSH. I'm on 125 of levothyroxine.. still. This is what I was put on one month BEFORE my surgery. Tested a couple weeks back TSH was 1.16. He says that's good. I thought after cancer they want it suppressed?

Your posts help me not feel so alone in this journey. Im afraid that I am losing my mind after all these months of keeping it together.

You are correct; TSH should be suppressed. Please try to find a better doctor and one who understands this...........................

Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body. This is the hormone that is actually free and exerting effect on the cells. These are the thyroid hormones that count.

http://www.drlam.com/articles/hypothyroidism.asp?page=2#diagnosis: standard laboratory test

I am not ashamed to say that I was in counseling for 2 years in the aftermath of Graves' and it was monies well spent. Consider it. Cancer and other illness' can be and are traumatic.

Good to see you here, JoJo!

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[JoJo]

Thank you Andros :)

[Butterflyjkg]

Hello. I wanted to say something . First of all, sorry to hear you are having trouble. I think that each person's case is different. I THINK. I really am NO expert in any of this. I am "supressed" at 1.5 TSH. I am told that is exactly where I, personally, need to be. I was told that by two different doctors. One I totally love and respect, the other being my ENDO, that I don't really love THAT much.

I think it depends on what kind of cancer you had, or whatever. Mine was papillary.. very tiny, self contained, no where else, etc. I think if you had it in a larger size or area? or if it was not self contained, etc, it has much more to do with how low or high? your supression is. Like I said, I am new to this too.

I try not to let myself "go there" and think about what if this would come back.. what if they were WRONG like they were with my mom...what if one cell got out when they were cutting me, etc. If I go there for more than a few minutes I can feel the panic setting in.. the blackness...the HORROR.

I figured out a few weeks ago that I am absolutely PARANOID of illness. I think it is PTSD. What I went through with my mom was horrifying. I think it's the fact that I can't control something. I am a fixer, healer, helper, and "to the rescue" kind of person. When I can't solve it or figure it out or get rid of it, I am VERY uncomfortable.

I know life is all about things you can't change or fix or whatever and it's dealing with it.. that's what life IS. I'll be honest. Cancer scares the living hell out of me... it terrifies me. I think that if I had had another form of cancer... that I couldn't quickly "fix" like thyroid, I don't know how I would deal with it. I barely made it through this.

Perhaps if I didn't know what it can do.. if I didn't see it first hand with the person that was the light of my life.......maybe then I wouldn't have gone into
I'M GOING TO DIE mode. Just thinking about that place where I was... oh man.. it was an UGLY place. I thank GOD that I am not in that place right now. THANK YOU GOD.

If you think you could benefit from counseling , by all means DO IT.