New to Website New Diagnosis

16 years 11 months ago #5374 by mznoregrets
Replied by mznoregrets on topic New to Website New Diagnosis
Hi RAH,

   Not sure if you are looking for input from a female, however, I also was caught off gaurd by bladder cancer just a few short months ago. I had just married the month before and this dx was not welcomed. He lost both his parents to cancer in the past few years and my dx brought it front and center in a heartbeat. My "journey" is in the invasisve bladder cancer section if you choose to read it. Even tho it has been hard and created some uncertainty for the future....it has caused me to take some actions that I feel have helped me come to terms with the cancer and helps me stay true to myself and living.

   At first I freaked out about statistics - they are there in black and white. I was originally stage 2, then 3a (after RC) and on Thursday get new scans that will tell if my lung nodule is a scar or stage4. It is tough to shift from the shock, then move into a mindset of being positive. One of the best things I chose to do was to ask my best friend to help me make a box in the basement for "just in case" or "if that happens". I bought a journal for my son, my hubby, my Mom.  I put a favorite photo or momento from something special we shared - then I wrote what mattered most to me about that time. Sometimes I just share a thoughts, like howmuch it meant to me when my Mom helped me plant flowers on Sunday. I make the journal entry an opportunity to say how I feel and share the love. Ultimately, if I am blessed with 20 years :) what a gift this will be to my loved ones. .....Maybe I am a bit weird, but I would not have done this as busy as I was before the cancer.

    If I have freaked you out even more - forgive me. I just finished my first month of chemo and I know my brain ain't the same for now. I just wanted to share a thingee thatI have started doing that helps me make a positive step inspite of the dx.

 God bless you and yours, you're all in my prayers, Holly

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16 years 11 months ago #5371 by Mike
Replied by Mike on topic New to Website New Diagnosis
RAH finding out I had BC was the last thing on my list. But having been told so I just started fighting it that is my nature. And I try to focus positive and keep a good attitude and others in the house I find this makes the word "Cancer" a little less spooky. Yup I have my days but overall a positive spirit goes along ways. My motto in life has always been winners never quit and quitters never win so I take it one day at a time and try to keep my mind in a postive manner. When others see you taking the bull by the horns I think it relieves their stress somewhat. And I try my best to keep my stress under control by keeping busy when it starts getting to me. And when I have a bad day I just let it out this is totally accepable under the circumstances and my wife seems to always understand me we all have a breaking point. Then I just get up and brush the dust off and set out to keep fighting and trying my best to tame this beast. I got a great team of Dr's and with my attitude and their skills I think I have a fighting chance here. I put my time and energy to getting cured not into what if or suppose this. Doing this seems to help me deal with this situation much better. Keep it simple. Regards, Joe

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16 years 11 months ago #5367 by RAH
Replied by RAH on topic New to Website New Diagnosis
Pat,
Thanks for the story about your grandchild. Sometimes I want my kids to be that blunt. Keeping those thoughts inside will do them no good.

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16 years 11 months ago #5365 by Patricia
Replied by Patricia on topic New to Website New Diagnosis
Rah...oh you're so right...the stats out there on the internet are scary and really they are so variable and you start reading them before you know what your particular grade and stage is ..just trying to get a grip on what it is. I found it rather dumbfounding at first and i'm sure your older kids do too. Tell them to quit reading that stuff!!!....I'm afraid the little ones only pick up Cancer which they asssoicate with dire consequenses. I remember after my surgery my youngest grandchild who was 7 at the time was over for a Pizza night and he was being rather contrite and probably just acting like a boy and all of a sudden he blurted out " Are you going to die Grandma" and started bawling. Oh my gosh my heart just broke for him. He had been holding all this in for lord knows how long. I just took him aside and told him what i had and how i'd been fixed in terms he could understand and told him i didn't plan on going anywhere unless a truck hit me! So i guess its best to even address the youngest because you can bet they've overheard it from someone else...and keep it as simple as possible. Just a thought.

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16 years 11 months ago #5362 by RAH
Replied by RAH on topic New to Website New Diagnosis
Tim,
Thanks for the offer. I have read many of these strings and all are very helpful.

I am a male.

I have a wife and we have five kids (son, 20; daughter, 17; son, 14; two seven year old girls)

The kids and wife are having a harder time with the thought of cancer then I am.

In the past nine years we have lost my wife’s father (71 years old to colon and brain cancer), my uncle (69 years old to lung cancer), my aunt (65 years old to pancreatic cancer) and in January our sister in-law (46 years old to breast cancer). So the word cancer is associated with dying for my family.

As I am becoming educated, I share the information with the older three (the younger two seem to be able to disassociate my cancer from their Aunts. Maybe it is because I am still active and they haven’t seen a change to my physical activity).
Since the older three look on the internet, they see scary statistics.

What are some of the conversations you had with the younger generation so that the idea of dying isn’t their first thought?

Thanks RAH (Rick)

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16 years 11 months ago #5361 by Mike
Replied by Mike on topic New to Website New Diagnosis
Wendy I was told by Dr. Malkovicz that if things went well with the construction of my neobladder he would use about 50 cms of the ileum for the procedure which in adults is anywhere from 300 cms to 850 cm in length. Regards, Joe

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