Just a thought

15 years 8 months ago - 15 years 8 months ago #19533 by mznoregrets
Replied by mznoregrets on topic Just a thought
Please reread my posts on this thread. I don't think you understand what I have posted.

Yes, it is nice that our community is very supportive whether you are a caregiver, or a survivor of any type of bladder cancer. There is a place for humor and positive thinking no doubt. BUT those of us who have progressed and there is no cure need a place to share our fears. Until a Dr tells you you are on palliative care - that you are not going to survive your cancer - YOU DO NOT KNOW WHAT WE ARE FEELING!

Susan was NOT a prime example. She had fears and thoughts she did not openly share - we talked on the phone of those things. Others and I who have progressed are emailing these thoughts to each other to avoid the "pretty words" we know we'll see posted should we post our scary thoughts on the forum. Your response to this thread is exactly what I am talking about.

Forgive me Clara should I be involved where I should not be - you CANNOT possibly know how she is feeling. Your husband is well and you and Gene and you are getting back to living. Can't you see Clara needs a place to share what she is feeling especially the things she fears?

You can pray for "things to lighten up" for me and you can pray my "treatment is successful". But it is not always appropriate and nessessary to post it. Do you know that when I was told of the mets I could not function until I planned my funeral? Do you know I am afraid to go to sleep sometimes fearful I may never wake up? Do you know I am scared I may never have a good day without pain meds? DO YOU REALLY KNOW HOW IT FEELS? Do you think it is ok for those of us with this reality to have a place to share these dark and scary thoughts? Is it ok to ask that only those of us who are experiencing this be posting on these particular threads? Again I implore you to reread the entire thread.

I am trying to be nice and I am trying to deal with my fears and my freaking cancer. And I don't want to hide in the shadows of the forum.
God Bless, Holly

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15 years 8 months ago - 15 years 8 months ago #19522 by Flamenco.
Replied by Flamenco. on topic Just a thought
Holly,
I think I must have read your post about 5 times before replying. I felt like reaching out and hugging you. Not just for what you are going through, but for the compassion for others I felt in your post. I read and re read it, and know you want to say things without upsetting others. But this forum is here so that all bc victims can seek information, speak openly, help one another, and have support when they need it.
I sometimes feel like an interloper when I post here. At the moment my cancer is not invasive, but I realise how fortunate I am, also that I may be walking in your shoes in the future. On my part, I hope you feel free to come on the forum and say whatever you feel, however dark it seems.You won·t upset or offend anyone genuine.
Love Flamenco

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15 years 8 months ago #19518 by Gene Beane
Replied by Gene Beane on topic Just a thought
Holly, Clara and Cynthia,

I really think the combined effort of all, invasive and the mets section, from patient to caregiver , we all continuously support all surviviors..
For some the situations may get a little to close to home, some are more likely to dwell on what is to come. My humor and my positive thinking gets me and my husband through what our situation is at the present. If we are given any news medically that is disturbing I feel I could share that. Susans situation was a prime example. She shared, for us it was like reading a story, she was an accomplished writer and composer so she had one up on us in that area. I think what she did on her post is a good idea, read only if you are able to handle the subject..beware the news is not good,, kinda thing. Never be afraid, to SHARE, maybe a red flag is appropriate,,those who are fearful can stay away, therefore not to frighten them. Zach is another example, as he said , he doesn't mix words with adults on these issues..its in the hands of the reader, they are in charge of their emotional being.
Clara, I know how you are feeling, we had to cancel all of 2007 and part of 2008. Plus I am still aprehensive when trips come to mind, panic maybe. Like I will be in charge,,responsibility of what could happen while gone. I am sure its left over emotions,,have to let go of it all.
Thats my thoughts on the matter, and Holly I will pray things lighten up for you, you have a good time with your son while he is with you, and treatment is successful.. Ginger Beane

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15 years 8 months ago #19516 by Cynthia
Replied by Cynthia on topic Just a thought
Holly,

I thought I would share these two links with you one is from a study on people dealing with pain better when they were encouraged to do what they term emotional writing. The other is from the Web Café they are my writings I did while going through treatment and shortly after. At the time I did them I did not realize they where my therapy, my way of coping. You said you did not know the right way to go through this. I do not think there is a right way or a wrong way there is just your way. There is no instruction book we just make it up as we go along. All I know for sure is this should be the one place you can say whatever you want or need to say. Anyone that has not walked your path can not say they truly understand. But I can understand your need to say what you feel and you need to know that it is ok to do so.


blcwebcafe.org/content/view/72/81/lang,english/

health.yahoo.com/news/reuters/cancer_pain_dc.html

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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15 years 8 months ago #19511 by Clara
Replied by Clara on topic Just a thought
Holly,

Even as a caretaker, I can definitely see where you are coming from....Bob used to be one of the worst about his pain medicine but now he takes it regularly.

He had mentioned wanted a good coffee mug....I made sure that we went to the pottery and even let him pick it out with a soup bowl to match. Got me a set too.

All of our summer plans have changed. Had planned to go to the beach with the girls families in June but we went to the hospital instead. Had planned to spend more time in the mountains this summer but we have not been able to go since the first wk. in June. We are at home most all of the time but at least we can be here together and I value this time so very much.


My daughters and one son-in-law are going on a cruise in January and they have encouraged me to go ahead and get a passport too since Bob has really gone downhill this summer. Am I supposed to feel guilty if I do that?

Bob cannot talk about what is going on so I just try to take care of everything myself that I feel like needs to be done. A friend of mine said that she and her husband could not talk about his illness and the future so they just dropped the subject and she took care of everything too.

I often have a hard time knowing what to do to encourage Bob. He has been a real trooper and really tried to stay strong and I want to be with him and help me through everything. He has been a wonderful husband and father and he still shows so much love to me and is so appreciative of me too.

Holly, We really have to depend on our faith and love of God to get us through this. Please do vent and let your forum friends offer anything that might be of help to you too. You are evidently a wonderful person.

Love and prayers
Clara

Caretaker of husband, Bob.
Stage IV
Diagnosed Jan, 2007

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15 years 8 months ago #19510 by mznoregrets
Replied by mznoregrets on topic Just a thought
Hi everyone,

All I can say is this.....I feel better already!

Thank you for hearing what I was saying and then sharing that with me. I am so relieved that lights are going to shine on these dark things that I have been keeping cooped up in my head. Since December of 2007 I have been facing stuff the best I can yet feel like a freak of sorts. Here are a few things I have noticed that have changed since mets hit the horizon....

I put christmas lights on my fake trees in the house becuase I am afraid I won't see next christmas.

I only get small bottles of perfume out of fear that a large one would be a waste.

I can't make plans 3 monthes in advance.

I am afraid of all the pain meds and becoming a drug addict - even tho the dr explains it won't happen to me.

This is my start. I have days with no dark thoughts, too. Just not sure how to deal with this all. God Bless, Holly

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