Just thinking...

I am sorry u r  feeling this way Mary .  I know what it's like to live with the fear is it going to be today that my life is going to change forever.  The truth is we won't know until it happens. In the meantime it is best not to feed this fear and give it power.  I think it is good that u r planning ahead and getting your affairs in order.

I just try to live each day as if it was my last day.  I want to enjoy the freedom that I have now to the fullest.

One year ago on the 15 thof march I was diagnosedwithin ataxia.  At that time I was walking like a drunken sailor and collapsing on to then floor.  I walked with a cane to protect myself from a falling injury.  When I asked my physical therapist if I would ever give up the cane, he said no.  I researched and found other ataxians who tried to help me.  I am now cane free.   I have bouts but I will not give in to them until it renders me totally helpless.

The only cure for ataxia is death. 

I have a young friend 30 a new mother only married 3 years who has your cancer.  She had the surgery also and is now exercising and eating very healthy daily.    I understand your fears and they are not without merit, but u never will get these days back so live them and live them with joy.

I hope u feel better soon.  U always sound so chipper.

mp327 said:

Marynb

I'm sorry that all these thoughts are running through your mind right now.  I have had times such as that also off and on.  I usually keep it to myself, just like you, which may not be the right way to handle it, but I always think that worrying others may just make things worse.  I doubt that there is any cancer survivor who is unable to relate to this.  Fear and uncertainty are hard to deal with and nothing I know of causes those two things more than cancer, at least in my personal experience. 

As for the stomach pain, I hope that the diet change will continue to give you some relief.  I've gone for almost two weeks now (knock on wood) without having to vomit, so I consider that a real improvement. 

I also keep it to myself....  I'm afraid people will get tired of hearing me talk about it so I don't.  That's why this site is so important....

mp327 said:

Marynb

I'm sorry that all these thoughts are running through your mind right now.  I have had times such as that also off and on.  I usually keep it to myself, just like you, which may not be the right way to handle it, but I always think that worrying others may just make things worse.  I doubt that there is any cancer survivor who is unable to relate to this.  Fear and uncertainty are hard to deal with and nothing I know of causes those two things more than cancer, at least in my personal experience. 

As for the stomach pain, I hope that the diet change will continue to give you some relief.  I've gone for almost two weeks now (knock on wood) without having to vomit, so I consider that a real improvement. 

are that I'm not worried about a recurrence or that the treatments didn't result in a cure.  I feel uncomfortable saying it in light of the prevailing feelings here.  Maybe I'm just revealing the rare duck that I am.  Maybe I ought to worry about it. I dunno. Maybe I'm not worried because I had stage 1 or 2 (it was never definitively decided which).  I hope that I've not offended anyone as I have a habit of doing, although never intending to.  Feel free to yell at me if you want. 

LaCh said:

thoughts that I normally keep to myself

are that I'm not worried about a recurrence or that the treatments didn't result in a cure.  I feel uncomfortable saying it in light of the prevailing feelings here.  Maybe I'm just revealing the rare duck that I am.  Maybe I ought to worry about it. I dunno. Maybe I'm not worried because I had stage 1 or 2 (it was never definitively decided which).  I hope that I've not offended anyone as I have a habit of doing, although never intending to.  Feel free to yell at me if you want. 

lach,  you do not offend me with anything that you have to say....whatever it is....please do not feel uncomfortable expressing yourself....we have all gone thru torture.....say whatever you want to ..... of course,  we are all different people with different beliefs but we had the same rare cancer....that makes it more informative as to how we each handle things...no matter what, we are all trying to help each other and this is a great thing........ i am glad that you do not worry....what a wonderful gift that is.....give your dog a nice rub from me .......sephie

sephie said:

me too

marynb, i hate cancer also...i am sorry that you are having to deal with this other cancer....i have had and still do have really bad days but  i can not let anyone know except all of you because they just tell me that i should  have a good attitude  and that i should be happy how far i have come and etc..... i also had sis in law tell me how wonderful Robin Roberts attitude was during her ordeal...(made me feel like she was tired of my complaining),....soooooo,,,,,, i am truly grateful far how much better i am but i still hate cancer.....and i still hate the side effects that i deal with....and the lack of energy...and the pain....and the fear....ok....now i got it out again..... hugs to you .....sephie

Hey Sephie

You have every right to feel the way you do, it is your journey and if you feel scared, well you should ne able to express it, especially to loved ones.  I can't imagine not feeling empathy for anyone that has had cancer, your sister in law should just be thankful it is not her plight!

Do any of you ever have days where you don't think about it?

Eliz3 said:

Hi Sephi

Hey Sephie

You have every right to feel the way you do, it is your journey and if you feel scared, well you should ne able to express it, especially to loved ones.  I can't imagine not feeling empathy for anyone that has had cancer, your sister in law should just be thankful it is not her plight!

Do any of you ever have days where you don't think about it?

ok i have to be honest..... i have not had one day that i do not think of anal cancer BUT i am not depressed or suicidal or anything....and I am grateful that i can walk and do things......::::every day,  i get up and have to eat a certain way and drink tons of water so that i can have soft BM's,  then i have to take stool softeners,   then i wait for the BM and hope that it does not hurt too badly..... then depending on where i need to be and at what time, determines when i wake up to have enough time to finish all my multiple BM's////  then, i hurt if i sit too long so i stand most of the time...., anyway ,,    the only reason it is on my mind is because i still feel discomfort but it is a whole lot better than it used to be and i am truly happy about that.....  but there are others who do not think of it as much as i do.....so there is always hope for improvement...... sephie

I think about my cancer daily.  I worry.  I am stage 4.  I have quit saying anything negative (although I think it) because people don't want to hear that.  I never talk about my cancer unless someone asks then I ALWAYS say I feel great, I'm doing great, everything is great.  Many people have said to me I could be dead tomorrow, when it's your time, it's your time BUT it's not the same as when you have cancer staring you in the face.   I believe everyone on this board has feared the future and someone who has not had a life threatening disease couldn't possibly understand that feeling of fear.   I feel like I lost my life, my husband died, I'm raising grandchildren alone, my life is gone.  Even though this sounds bad, I am not depressed.  This is my life and I will do the best I can.  I firmly believe God is at my side, his will be done is what I want, and whatever my future holds, he will be there to help me throught it.