Newbie to forum.

7 years 1 month ago #52880 by GKLINE
Replied by GKLINE on topic Newbie to forum.
Hair
Or Lack of Hair
Or loss of Hair
Your loved ones (grandchildren) will still love and Cherish you ...... no matter What!
They just want you around.

I have a father in law who has the had the majorest comeover ont the planet. He has kept it going for over 52 years!
After so many years of talking behind his back about this vain attempt to look like he has a full head of hair, my youngest daughter said, "Papa why dont you just cut off your hair. It looks like so much work !"

He did! And now he seems so happy to have that weight off his shoulders.

You will be loved Even without hair



George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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7 years 1 month ago #52857 by Sean T
Replied by Sean T on topic Newbie to forum.
I have no grandchildren or children so I don't have anything to offer except to say good luck. That must have been a shocker when your doctor told you that.

08/16/16 - TURBT - 1 tumor, T1HG, 7.5 cm x 7.5 cm x 1.8 cm, non-invasive papillary.
BCG treatments (15 doses total - last March, 2018). As of latest cysto, As of May 4, 2023 - cancer free!

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7 years 2 months ago #52715 by Jack R
Replied by Jack R on topic Newbie to forum.
Angler,

Hair is a funny thing. After retiring I grew a full beard and got shaggy. My grandkids only knew me that way until I was diagnosed. I took a preemptive approach and shaved all facial hair (except for eyebrows). I was not going to go through the patchy- hair stage. I began collecting hats. My grandkids always wonder what strangce had Gramps will be wearing next - the hair has been forgotten - it never really mattered.

Kids need to know you have medical issues "Grandpa is sick" and some things may change a bit - but they don't need to worry about adult things. I try to keep things as close to 'normal' as possible. Nothing interfers with the 2 way enjoyment of being with my grandkids.

You might have to plan activities a bit differently, or adjust timing, but with a bit of adjustment you and the grandkids will continue to have a good time. Fortunately, kids accept us for who we are, not for the beauty of our tresses.

Best
Jack

6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
The following user(s) said Thank You: Alan

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7 years 2 months ago #52701 by CatherineH
Replied by CatherineH on topic Newbie to forum.
Hello Angler. So sorry about your diagnosis, but like Cynthia said, you are among people who have shared your shock and fear. It takes a while for that to settle into your brain and readjust your thinking. Then you focus all your energies into your treatment plan. Studies have shown that getting chemo upfront can result in more positive outcomes over the long term. You did the right thing in getting that second opinion so you can feel confident that you and your medical team are on the best treatment path.

I was diagnosed at 55. No symptoms really, never smoked, and in good physical health. I didn't find this forum until 8 months after my surgery and was all alone those first dark months. I think you will find the forum very helpful. We will be here when you have questions, want to share comments, and sometimes you may just need to vent your frustrations (especially encouraged).

Best wishes... Catherine

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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7 years 2 months ago #52700 by Cynthia
Replied by Cynthia on topic Newbie to forum.
Hi Angler, We all have been through the shock and awe phase here and understand how terrifying it is. I was 49 when I was diagnosed, by the way lost my hair not once but twice. (Clinical trial) That was in 04-05, I just turned 60 and as you can see still around. What we have found around here is that it depends on the age. Always be truthful tell a teenager as much as they want to know. Just knowing that the doctors need to fix you with strong medicine that will make your hair fall out for a while may be enough for a little one. No matter the age help them see that whatever your treatment that it is part of your journey to wellness. I guess with my kids I just wanted them to see that things happen but how you deal with them is the a very important part of the story. I hope this helps and I am sure others will chime in. Welcome to our community and remember we are here if you need us.

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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7 years 2 months ago #52698 by angler45
Newbie to forum. was created by angler45
Diagnosed October 21st after urologist received pathology report. To cauterised to grade. Month later, another scope and congratulations, you are the youngest patient my doctor diagnosed with aggressive muscle invasive bladder cancer. As I'm sure as everyone else on this forum, I was devastated. How can this be, I just turned 50. After this, I wanted a 2nd opinion. Got appointment at The James Center, started the process over again, and same outcome. Next step, ct scan and density test, then chemo. Got to tell you, I'm reading trying to prepare myself for the future, and I'm very nervous. Need to figure out how to tell my grandson and explain why his papaw will be losing his hair. That's the pain I'm dreading the most. Since I'm new to this site, my question may have been answered already, how do I explain this to him?
Thx

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