I've been looking for a solution to chronic pain and have heard from several people that palliative care was effective for them.  I had always though that palliative care is the same thing as hospice.  Does anyone have experience with this?

We used palliative care with my mom when she was in the hospital, they were amazing, kept her completely comfortable.  If I could do it over again I would have started her with palliative care from day 1.

Yes, palliative care is available to anyone even if you're not at end of life stages, whereas hospice is only for people who are at the end of their lives.  Both help provide pain medications and keep you comfortable if you're having any sort of side effects

Yes a lot has changed with palliative care over time.  I get really exhausted and have found that my palliative care team has been helpful to me in a number of ways.  They even helped me get my medical marijuana license too! :)

It's a common misconception that hospice is the same thing as palliative care.  Palliative care is available to anyone and they can help you manage your side effects from headaches to constipation to nausea and everything in between.  Ask your doctor for a referral.

We used palliative care for my grandpa years ago. They were so kind and a great resource to take advantage of. They're not hospice!

Thanks for the info everyone! I didn't realize the difference in hospice and palliative care either!

Palliative care gets a bad rap, I don't know why people don't talk about this more.

I was so lost in my cancer I didn’t even realize I was under Palliative care until I felt joy of wanting to live again. I would have to say my palliative team brought me back to life emotionally! My social worker Amanda has been life altering for me. I didn’t know how to see life after cancer…. But now I see so much more. 

Has anyone tried palliative care? 

Does anyone have advice or experience to share about wearing a wig in public? I've got a couple wigs but I've only worn them around my house because I'm nervous that they'll fall or slip out in public. I'm also just not super confident right now in general because of all the changes my body has gone through from treatment. Anyone else feel this way? 

I've always been one to just rock the bald, so I don't have a ton of advice, but I will say that no one will notice as much as you do! We are always paying so much attention to ourselves, even the tiny changes, and it's comforting for me to know that I pay WAY more attention to myself than anyone else does. Chances are that no one in public will even realize its a wig, and even if they do notice, no one usually says anything but compliments since they have the sense it's a sensitive subject! At least in my experience but maybe I've been lucky. 

It's scary at first, but just go out and go for it! My method was to put myself out there as much as possible and every time I left the house in a wig it got easier. It's good to gain confidence and be comfortable in the house, but the real fun is rocking the wig in the wild!

Love reading everyones advice! I don't have advice to share yet, but I think I'll needing to read this soon so I'm following along

I'd talk to someone in person that wears wigs often, they can give lots of advice for how to keep them secure or other ways to make it look super natural. I also looked up a lot of online tutorials which were helpful too. 

Personally, I would rock the bald look, but do whatever makes you feel most comfortable. I was just reading an article on this site on 7 tips for wigs for cancer patients, I think you should check that out!

Mostly I don't like to wear wigs, more into looking natural, but it depends on every other person. So do whatever you feel confident and comfortable in, so if you want to wear wig, then I'd say give yourself more chances to get accustomed with it. Wish you best. 

I have two wigs that I have worn on and off.  I was aware that I would lose all my hair before going through stem cell transplant.  Many people advised me to just wear a scarf or rock the look.  Personally, I didn't want to go bald.  I was too afraid to lose my hair.  I am not vain but my hair gives me identity and comfort.  Plus going bald means everyone would know that I am going through chemo or have cancer.  I wanted to avoid all of that.  
I found a contact of a local wig store through my social worker.  The owner of the shop was super helpful.  She specializes in custom wigs and had made wigs for many cancer survivors.  She helped me pick wigs that fit my size and style.  I had two wigs made - one with short hair and one longer.  I had a lot fun trying and selecting different wigs.  
I started wearing wigs right after I lost all my hair.  Since mine were custom made, they fit well and I didn't have to worry about slipping them off my bald scalp.  Now I have short and curly hair but I still enjoy wearing wigs once in while.  It's fun to have different styles.  

Honestly I stopped wearing a wig after my second round of cancer.  Too itchy.

Experience with wigs?

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. 

Welcome everyone, it's so wonderful to have this community.  I'm supporting my husband with prostate cancer, and I'm also a breast cancer survivor myself.  Big warm hugs to everyone! We got this.

Meet the OneVillage Community

Welcome! Let's get introduced.

I hate to say this, but as horrible as my experience has been over the last several years I am grateful for the perspective my cancer journey has given me.  I wasn't always grateful for the perspective at the time I was learning to live with my new reality though.  Wondering if others are experiencing similar emotions or feel like cancer has taught you something? 

"Everything you've ever wanted is on the other side of fear" was my favorite quote.  I thought that if I could face my ultimate fear - having cancer - and get through it, there wasn't much I'd be afraid of doing ever again.  Anyone else feel like this too? 

Even though it's an awful experience, I still feel like everything happens for a reason. I may not know the reason, but I try to lean into the good things that the experience has brought. For example, some of the friends, nurses, and others I've met along the way have been absolute angels and I have an appreciation for relationships like that now more than ever.  


It definitely brought a new perspective to appreciate life, time with those you love, and the smaller experiences and joys! 

For me, it's who you can really count on when times are tough!

That I can do ANYTHING I set my mind to and a diagnosis doesn't define you!

To love myself and give myself a little more grace!

To give myself and others a little more grace!

Cherish every moment of life and also feeling blessed about it. 

Mental Health Matters

What's the most important thing you've learned since being diagnosed? 

I can’t stop crying. Chemo is killing me! I’ve been doing treatments for almost 2 years. I cry all the time. Tried antidepressants but no luck. I’m ready to give up! I don’t wanna die but thus is sooooo hard! Sorry I’m so negative but I’m not sure what to do. My oncologist doesn’t help. She just says it’s your new normal. Again sorry for all tge negativity!

You need a different oncologist. My opinion, and different anti depressants or increase? You do , and do, and do, until it works! Best wishes

My treatments really screwed with my testosterone levels and I was crying for everything and anything. Can they check your hormone levels? Maybe there is something there.

You are allowed to cry and be negative sometimes. It helps to let the anguish out. I'm sorry you are going through this ❤️🙏

My husband is dealing with "chemo for life" as well. Im hoping he isnt on this schedule forever. He's on an emotional and physical rollercoaster, for sure.

I totally feel your pain here, I felt that way many times.  Love and light to you.  I hope you can think of what's going on now as temporary, even though it's completely all consuming now at the moment? 

Sending love to you all, I know hard this is ❤️‍🩹

I've had two recurrances, I totally understand what you're going through.  Hang in there and try to be kind to yourself. 

You are allowed to cry and be negative in these very hard times, but be hopeful and kind to yourself, and never give up. Also I'd say maybe it's time to change your oncologist and do whatever you feel best for you. We're all here for you. Much love!

I can't stop crying! Chemo is killing me! 

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.

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? 

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