Welcome to OneVillage! We are a community of people living with cancer, either as a patient, a survivor, or a loved one of someone who is.  Everyone's story is important, tell us yours below! 

I’m Mary, I’m a colorectal cancer survivor, and am here to get support as I am trying to reintegrate back into my work and other life after treatment. 

hi I'm Janet, new to the group! In treatment for colon cancer. 

Hi everyone! My name is Katherine and I supported my sister during her brain cancer diagnosis. That's why it means so much to me to help the OneVillage community! 

Hi everyone! My name is Carlee. I supported my mom through her breast cancer journey. She's currently in remission after radiation and surgery! 

HI everyone! I'm Barb,  my fiance Troy [37 years ago my very first crush!) has stage 4 lung cancer. We've been together just under 2 years but we've been friends and secret crushes for 37 years! He was recently diagnosed with stage 4 non small cell lung cancer. The oncologist does not communicate well and is only in 1 day a week. This is our first yet very critical cancer diagnosis. I have no support system and I'm struggling every second of every day at the thought of losing my best friend, my fiance, my world.  

Hi Barb, thank you for sharing your story. I'm so sorry you're going through this, our community is here for you and sending our healing thoughts to your fiance! 

My name is Christina and my mother was recently diagnosed with brain cancer.  

Hi Christina, I’m Ashley, one of the OneVillage ambassadors. I’m so sorry to hear about your mom but please know that we are here to support you. Don’t hesitate to reach out if there’s anything we can help you, so glad you are a part of our group! 

Hi, I'm Karoline.
Newly diagnosed with Ovarian Cancer. Recovered from surgery...and had first chemo two weeks ago. My hair just started thinning and coming out.  Still processing everything...but overall don't feel horrible...(yet).

Hi I am Debbie.  Receiving Chemo for the third time since my diagnosis of Pancreatic Cancer in 2020.  Had Whipple Surgery and was basically cancer free almost to the one year day. 

Meet the OneVillage Community

Welcome! Let's get introduced.

Has cancer and chemo completely changed your emotions? I used to be a rock and now I’m more of a river.￼

Yes. I was upset all summer until I made some peace with myself. After I felt like I almost died from a chemo infusion reaction, I somehow became calm and had less fear. I felt lucky to be alive.

Being a cancer patient is an emotional experience. Going through surgery, radiation and chemotherapy are an emotional roller coaster. Completing treatment and moving on to the 5 year observation phase is emotional. Being a cancer patient and survivor has changed my life. My advice is embrace the new you. Don't think of life going back to how it used to be instead focus on creating your new normal.

Yes. I told my BF I just don't understand myself sometimes and just sit and bawl.....everyone tells me it's normal and healthy... I beg to differ! It's embarrassing sometimes

Has cancer and chemo completely changed your emotions? I used to be a rock now I’m more of a river. 🌊

Did you tell people at work about your cancer? When and how?  How did they respond?

Did you work during cancer treatment? How did you manage?

After working during my breast cancer treatment I got really interested in this topic and am now studying it.  If you would be open to discussing it with me email me wjcasper@uta.edu. I especially want to talk to some men becuse mostly women are volunteering. Here is an article my university did on me shortly after active treatment was done -- https://www.uta.edu/news/news-releases/2019/10/09/cancer-fighter

Great article Wendy! 
My initial diagnosis was March 2019 at 42 with very rare and aggressive Merkel Cell Carcinoma.  I had two surgeries to remove initial tumor.  Then went on short term disability while completing radiation.  Went back to work and was doing great.  I made it almost one year then it came back with a vengeance.  
I had robotic thoracic surgery to remove a tumor in my pericardium between heart and sternum.  Then PET scan showed three more inoperable tumors and started Keytruda immediately.  Went back on short term disability for a few weeks.  Then I decided the stress from my current employer was too extreme and unhealthy.  Started with a new employer after just being diagnosed with stage IV metastasis.  Never told my new/current employer and I just finished 2 years of Keytruda about 2 months ago.  I have been NED since the first scan after starting Keytruda.  I go to MD Anderson in 2 days for my first scan after ending Keytruda.  It's been a tough 3 years for us both.
I have often wondered if there is a network who help fighters get back to work or change industries etc.  It is difficult out there currently.

Best regards, 

Ryan Pratt 

Hi Wendy! We're so glad you stopped by.  We would love to help support your research, and love the work you're doing!  Please drop us a line at support@onevillage.io and we'd love to chat more! 

I didn't work during my treatment, but am glad you're doing this research.  I know so many people who have had to work during treatment and it has been hard on them mentally and physically.

Hi Ryan - it's so interesting that you say that about Keytruda.  My husband had the same treatment and found it very effective.  How were your side effects? Hope you are doing well, I am thinking of you and your journey.  It is very hard to get back to work after you've had a diagnosis and gone through something like this.  Wishing you all my best wishes!

Hi Ryan! Welcome to OneVillage! Our team would love to help you find the career resources you need.  If you're interested us making some connections for you send us a note at support@onevillage.io, we'd love to help! 

Ryan so glad that you are feeling better and really sorry about the continuous fight you have been in! I hope that your new employer can be sympathetic and also generous when you let them know (if you let them know). I know that places like OneVillage help support employers to be able to help employees like yours so maybe there are some resources here that can help.

Hi Ryan, So glad to hear you are NED!  It is truly a joyful thing to hear from your doctor!  I am curious to hear more about the job you took right after your stage 4 diagnosis- did you think about telling anyone?  How did you handle times that you were away from the workplace for tests and treatment?  Would love to chat with you if you are open to that.  Wendy (wjcasper@uta.edu)

Hi Ryan, So glad to hear you had such a great response to Keytruda! I'd love to hear more about your story related to your work decisions if you are up for an interview.  If you are send me an email at wjcasper@uta.edu and we can set I a time for talk.  I am offering $20 gift cards for amazon for folks that participate.  Best wishes for continued NED!  Wendy  

Let's talk about cancer and work

I had a meltdown yesterday.  Ever since my diagnosis I have really been struggling to hold it together for myself and my family.  Is anyone else feeling out of control? Does this get better? 

Been there! It happens to all of us.  Sending strength! 

It’s been almost a year since my original diagnosis and I am still not feeling like myself.  The panic isn’t as bad anymore but there isn’t a day that goes by that I’m not reminded of what happened. 

Thanks for posting, I needed to know I wasn't alone today. 

I can relate to this for sure. I feel awful when it happens, too. 

Is it normal to feel emotional when you're nearing the end of treatment? That's what I feel like.  It's strange, I don't know how to process what I'm going through right now.

@Janet - yes for sure, the thing is that there's not really a roadmap for going from patient to survivor.  It can definitely be a scary time 

Wow- so good to know I'm not alone in these feelings. Thanks for sharing, everyone! 

Totally normal. Just getting up and living day to day is enough. You don't have to always keep it together!

This one hit close to home, the first 3 months after I was first diagnosed, I don't think there was a single day where I didn't cry. I just felt like my life was falling apart and there was nothing I could do about it.  

You are not alone, I spent so many days sitting in my room alone and having melt downs, the only thing that went through my head was why me, why me? What did I do that cancer had to choose me? 

This is completely normal! My advice, as hard as it is, talk and open up. The rocks and foundation you can build around you will be so strong if you do this, that it'll make you have a strong platform to fight from

This is totally normal. You're not the only one.

Mental Health Matters

Meltdown

A little something to lighten your spirits :) 

Hi everyone, I’m new to this group. I was wondering if anyones taken tamoxifen and if they have experienced any hair loss on it? I started taking it for the first time last month and on the third day I noticed clumps of my hair on my pillow. I take 20mg in the morning. Also, I noticed I’m tired all the time. I had to stop two of my medicines (one of them I was on since I was 13) in order to take the tamoxifen because of their interactions with one another. I also started taking Buspirone a week after the tamoxifen to help with anxiety and depression. This month I have to get my 3 month breast exam. Does 3 months sound typical? I think I’m also due for my 6 month mammogram. The oncologist that did my surgery suggested I get MRI’s every six months but I can’t because I was born with one kidney. Anyway, I just wanted to say hi to everyone!

I’m on it. My bigger issues come from lupron. I have noticed I am slightly more irritable but I’m also super stressed so I’m hoping that goes down. I haven’t had any hair loss.

I use to be on lupron but it didn’t seem to help me. I found I was irritable also. I notice my moods have been changing a lot on the tamoxifen but I’ve only been on it since March 9th. I was told I might get my menstrual cycle on the tamoxifen but I haven’t (which I’m glad). I also have endometriosis so I’ve had a laparoscopy, d&c and an ablation. My oncologist talked about taking out my ovaries to put me in menopause but I’d like to go through it naturally if I can.

I am hear some pretty wild side effects from tamoxifen ! Please listen to your body and consult your doctor if you start feeling some of them!! Weight gain, brittle bones, and hot flashes more than normal!

Scared to start this because I've heard the same stories about some crazy side effects!

Has anyone experienced hair loss while taking tamoxifen? 

I am finished with my treatments but I don't see myself as a survivor.  Can anyone else share when you started feeling like one? I guess a part of me thought I would ring the bell and things would change, now I don't know if I'll feel that way in six months, a year, five years even.  

When I rang the bell I looked at myself as somebody who made it through chemo, but it wasn’t until the day my oncologist said those glorious words, “No signs of disease” I was no longer a fighter but considered myself a survivor.

I think everyone should use whatever term works for them personally at any given time. Something a nurse told me once that really resonated with me is that you are a survivor from the moment you are diagnosed. You don’t need permission or any certain milestones to use the term. I thought that was so empowering 🥰

I don’t think I have made it there yet.  I didn't have chemo or radiation, just surgery. Even though it will impact me for the rest of my life, I have a hard time seeing myself as a survivor.

I love the perspective shared earlier that you are a survivor from the moment you are diagnosed.  I wish there was more support for that attitude in the world.  I feel like the medical system has us go through medical trauma to get our bodies healthy and then just leaves us and our mental health to fend for ourselves.  Wish there was more of an education about becoming a survivor.

I don't feel like a survivor at all, thank you for sharing this.  It makes me feel a little better to know that for one cancer isn't a death sentence and all you beautiful ppl are still here and secondly that I'm not the only one left feeling so confused on how to transition from patient to survivor.

I also have trouble with the term "survivor". The big challenge with cancer is that there's never a ZERO chance of recurrence or metastasis. I'm grateful to be here of course, and truly hope I am a survivor -- but I prefer to use the term "cancer veteran" instead of "survivor".  

Every hardship you face only brings you one step closer to being a stronger person. Your life is worth fighting for when necessary. Never give up.

Someone once said you are a survivor the day you start fighting. Surviving might not be the end goal but the type of person and mentality that a person has to go through when fighting!

At what point did you start considering yourself a survivor? 

Has anyone used Facebook or other social media to share your diagnosis? I'm not sure where to start with telling people, and would love to hear how others handled this.

My best advice is to be careful who you decide to tell. You never know how people will react. 

We are using Caringbridge to keep friends and family updated, it's nice not to have to retell the same news several times since sometimes they are conversations you don't want to have!

I posted about it on Facebook, with the theme of the post being about promoting early screening which is what saved my life. 

I like the idea of a CaringBridge. That way people can subscribe or choose to see the updates. 

I think it's a great way to keep everyone updated all at once.

I've seen lots of friends share on Facebook, especially using the theme of early screening as Janet said. Never know who you might be able to help or connect with. 

Yes I've seen many post on Facebook but it's whatever you're comfortable with. Don't feel rushed. If you decide to post just speak from the heart. 

If you use social media a lot I think it's a fine place to share. Everyone is different.

I personally think it depends on your privacy details on Facebook as far as how much to share!

Telling people about my diagnosis was one of the hardest parts of the experience. I.felt so afraid to tell my work colleagues and even some of my friends, I felt like they would think less of me.

This is always the hardest part, but it depends on you as how much active you're on socials. But I think sharing with the closest ones is always better at first, as you never know how people will react, but you can always rely on the close ones or your family members. 

This is always the hardest part to tell your love ones about your cancer. You can share it on Facebook but always make sure to tell this to those who are close to you.

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My last red devil treatment. I did surprisingly well through all 4 rounds. Was able to manage my life as normal as possible. Still worked as a hairstylist and chased my 7yr old with severe adhd around as usual.Now I move on to 12 Taxol. I truly belive a positive mindset helps so much. I decided in the beginning I wouldn't let this chemo break me down and I have been kicking butt! Just felt like posting a positive post as we forget to talk about the good sometimes too!

I have started to feel queasy just looking at the red liquid 😱

Way to go! We need to hear these stories! Positive mind set is so huge. I was told to keep moving. Really helped me I think. Some days were better than others. My # 3 recurrence, so far so good. Pushing through. Staying on that positive train. Sending love hugs to all. 🥰

You go girl !!!! I work two jobs as well !!!! We do what we have too !!! 🙏🙏🙏🙏🥰🥰🥰🥰🥰

That is Great News. Wow! I am so proud of you for getting through the chemo. That is actually a major achievement. I have had serious doubts about if I am strong enough and today I finally told the Oncologist I will do it! Because obviously I want to live. And I want this Cancer out of my body! Your words give me Hope that maybe I too can get thru this. Thank you and Brave on you Tonya 🌞~

Virtual hug and high five! That is amazing. I hope and pray that your steps forward continue this way.

That's great! Way to go girl. Always have this mindset and conquer everything. Lots of love and best wishes to you. 

I really appreciate the people like you with this kind of mindset. You deserve to have a happier day, a healthier year, and an exceptional life. 

My last "Red Devil" Treatment is done! 💪

What are the best foods to eat to help my body heal after chemo and radiation? Are there specific nutrients I should be trying to get more of? Seems like there is a lot of conflicting info out there!

I just got my dad ensure and boost shakes.  those are packed w/ vitamins but easy to drink.  I have also heard that calcium and vitamin D are both important since chemo and other treatments can deplete you of those things. 

Just make sure you check your medicine to make sure it doesn't have any interactions - grapefruit is a common one. https://www.cancercenter.com/community/blog/2019/08/whats-the-deal-with-grapefruit-juice-and-certain-medications

I'm working with a nutrition team- Highly recommend seeing if you have one available to you! 

I've heard great things about the Ensure shakes. Vitamin D is so important to focus on as well. Lots of orange juice! 

I've been adding greens to my smoothies to get extra nutrients in. 

My oncologist recommended Alpha Lipoic acid during chemo, it's a supplement that can help your healthy cells stay healthy while the chemo medicine works

I'm starting to try to get more greens in in simple ways, so I'm doing things like swapping out iceberg lettuce on my sandwiches at lunchtime for spinach (better nutrients) or adding spinach to a smoothie (you can't taste it!).  These aren't huge by any stretch but I hope that if I do enough of these little changes it will add up to something larger!

Your oncologist and/or radiation oncologist should be able to connect you to a registered dietician who can help with this and give you some helpful tips. Please share with us what you find out!

I am really glad to see people in this community helping each other with all the info that they have.

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Wanted to share some good news with the group. Just received a call from my surgeon with the results of my blood tests and CT scans for my year and a half follow-up for kidney cancer. Still NED!!! Also, he's really happy with my GFR which is 67 and my creatinine level of 108! Both have improved at every 6 month follow-up. Stay strong and positive everyone!!!

That is incredible news!! So happy for you! 

Well done!! I hope I will hear that news one day too. 

That is wonderful news. Thanks for letting us know. We're all happy for you!

Great news! I'm NED! 

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