Do you tell people?

kathewa

I’ve never been one to share a lot about my personal life with friends or family. I’m the one that asks questions and get others to talk about themselves. I have only known for a week that I have stage 3 colon cancer. I’ve told my husband, my mother, my mother-in-law, and a good friend. I’m guessing that at some point I will need to tell my boss. Is this something that I should be telling people or will people treat me differently try and I shouldn’t tell people? I’m conflicted about what to share. Any experiences or stories from your life that was successful or lesson learned?

spikecjc

Hi. I am 2.5 years into treatment and surgery(s). I had chemo and radiation and LAR with a loop ileostomy (temp) and then the ileostomy reversal. I was VERY open about my journey with everyone. I worked full-time through chemo and radiation and then took off for surgery(s). I was not the normal patient in that I did not have any severe side effects from chemo or radiation and was only nauseous after chemo. I scheduled chemo for Fridays and had the weekend to recover to go to work on Monday. I actually have a little video blog on YouTube with monthly updates that I used to communicate with everyone. I did not feel like anyone treated me any differently (other than a lot of sympathetic concerns). It actually made it easier for me to communicate with everyone I know because I didn't have to hide anything from anyone and worry about who I told what. I also used it as an educational forum to scold people that have not had a colonoscopy. I don't think any of my personal relationships suffered from being open about the experience. Stay active and healthy right up until the day of surgery and get back into it as soon as the docs let you.

https://www.youtube.com/@curtjcarlson2023/videos

They won't let me post direct links but if you copy and paste the address above you should get to my blog. If you follow me on YouTube you will get updates when I post new videos. Thanks and good luck with everything. It will not be easy. Feel free to reach out anytime.

PS - Attitude is everything - Stay Positive!

Arx001

Hi,

I’m a pretty private person so I shared it only with the people closest to me plus some kind relatives who offered me guidance. Whomever I shared with, I asked them to keep it private. I was open with my older children but the younger ones only knew that I was sick. I didn’t inform very old or fragile relatives.

It’s unlikely you’ll face any malbehavior but remember that you are most likely be given platinum based drugs and therefore expect to lose at least some hair. You will also be likely be given a Folfox regime (perhaps after the radiochemo) and that would mean wearing an infusion attached to the chemo port.

No one will (and should) judge you for keeping this a secret for some time or forever. The same applies if you openly share your journey on social media, something I deeply appreciate but would not do myself.. So it’s up to you.

Good luck and best wishes.

bangle

I was very open as well. My journey started in April of 2023. I have sense had surgery, 12 sessions of chemo, and recently had my port removed. There are more people out there than you think that have had a family member or a friend that has been through this. It is one of the reasons I reached out to this forum as well. There are many who lost loved ones from colon cancer, I needed to find some that had survived. Be prepared for that as well. Good luck on your journey.

[Deleted User]

All I can do is tell you my story. I didn't keep it from anyone who mattered. I am convinced that had an immense influence on my recovery and surviving 6 years clear after stage 3C colon cancer, the subsequent surgery and chemo.

We're faithful in our church attendance and active in our congregation. We also know Christians all over the world. My wife is also cancer survivor and during both our journeys there was Christians all over the world praying for us. I had tremendous care and I know where my healing came from.

Another side of that is people generally want to help wherever they can. Don't deny yourself that support and don't offend those who matter by NOT telling them.

Steelkiwi686

https://csn.cancer.org/discussion/328955/do-you-tell-people

I understand completely having been shockingly diagnosed with stage 4.

I wanted to mention you do not have to tell your boss but you should go to HR and get the forms for fmla in case you will miss time. You don’t need to tell them why at that time.
The dr will complete the forms and send directly to HR. Don’t forget you are protected by law from your health info being shared.
I let HR and then disability insurance deal with the Drs and eventually once I had been out of work for some time, I discussed it with my boss. There was no doubt she already knew by then and was very kind.

I kept my circle small in the beginning. It worked for me. I told only the most important people in my life and the rest eventually all found out most likely because I suddenly disappeared from work one day and was never able to go back. More distant family members found out from the immediate family I told.

I just didn’t want to talk about it with anyone outside my family and a couple of friends that I felt would actually care and not treat it as simple gossip.
My thought was that it was not a secret but it was intensely personal.

I needed to process the shock without discussing it with a bunch of people.

This is a very personal decision, one of the many many you will be faced with making during this journey.

Do what you feel is best for you. Whatever makes you the most comfortable while you figure this out. Get used to putting your own feelings and welfare first. No guilt.

oh and I am now over 5 yrs in remission and I really enjoy running into people I haven’t seen in years to say “I got better!!!”

Best wishes

beaumontdave

Hi, if it came up 'organically', as a part of regular conversation, I'd tell it, as matter-of-factly as I could. My life revolved around our health issues at times, so that I didn't think hiding it served anyone, nor ennobled me in some fashion. It may get you shunned by some, but not dragging around or being a mope, living to laugh, enjoy, and share other's company is a worthwhile pursuit. I probably didn't do this enough, and our/my world got quite small, for a long time, which made coming back out to any kind of social life, much more daunting. There's no right or wrong way about it, just what you want from those you know…………………

Coco23

It's a hard thing to talk about, and I've isolated myself for years. Not all my fault. Covid also happened right after I was diagnosed with stage 4 colorectal cancer. I'm pretty private, with health things. I don't tell everyone every time I feel sick or get hurt. But, that was in 2021. I'm still alive and have limitations on what I can do, and what I'm comfortable with. It's just not something I talk about, except to my closest friends/family. But now meeting someone. Which I never thought I'd worry about. But I am still alive, lonely, but the things that my body has been through has changed a LOT! So, because I'm tired of feeling lonely and probably have exhausted all the people in my life I'm choosing to tell, ONLY the minimum of what I feel comfortable with after Ive decided if this person is going to be in my life longer than a minute & a 1/2. Is the impact of what we're telling them going to affect them and how they treat us? Perhaps, but we can't control that. It's a hard place to be in on both sides, ya know. But I say if you feel like you want to tell someone, do it. Everyone has limits. Not everyone can handle the same things, doesn't make anyone bad or better… cancer sucks and someone may have just had a battle themselves or with someone else & may need a break. I feel like by telling, I'm giving them the option to not watch me go down this road. Because the only thing I can for sure promise is that I'm going to cancel almost every plan we have because my confidence is shot or my stomach won't let me leave the house. I also live in the country so it's very easy to isolate. I apologize if I got off topic.

Axel7

I was very open as well, I don't know why, I am usually a private person and I did not want to be one of those people constantly talking about my medical issues. I was amazed at the responses I received, now that I am through the worst of it. I am glad I did.