Being Honest About Living With The Bad Days (Cholangiocarcinoma journey)
ฝัง
- เผยแพร่เมื่อ 19 เม.ย. 2023
- Hi friends! Welcome back to TYP. As anyone with a longterm or terminal illness knows, there is often a pressure to put our best faces forward ... both for ourselves and for those around us. But, even when treatment is going well, there are often lots of awful side effects and challenges that pop up. And it's important to acknowledge that we all have bad days where we feel discouraged. In this video, I talk about some of my recent immunotherapy side effects and the physical, mental, and emotional struggles I'm currently working through.
Remember: It's okay to not feel brave and strong every day! You are allowed to feel upset and be vulnerable. You are also not alone, as so many of us are fighting a similar battle.
Want to join our new community for younger people with terminal illnesses and their loved ones? Email Megan at terminalyetpurposeful@gmail.com
One of the few benefits of social media is witnessing so many beautiful souls like Megan fighting this dreaded disease with such humor and dignity. We must never forget them and the lessons they taught us.
RIP Megan. I am so sorry to learn from visiting your FB page that you passed towards the end of 2023. Thanks for taking the time and effort to share your journey. Even though you aren't still here to chat with; I sincerely hope you knew (and your family and friends knows) how important your story and thoughts are/were to many of us.
Hello everyone! I am so very sorry to let you all know that our sweet Megan has passed away this morning (October 4th). I just saw her husband’s post on instagram. 😔🕊️ Fly high sweet Megan 💛✨🙏
Oh, no. I'm so sad. I was just now thinking of her and decided to check in on the channel. Thank you for sharing the news.
Rest in peace:(
So sorry to hear this. What a precious lady.. Thanks for sharing your journey with us Megan 😢 Rest in peace beautiful
😢😢
😢😢😢. Horrible news! Rest in Peace sweet lady. I hope they will come up with a cure or at least better, more effective treatment for this disease very soon!
I was just thinking of Beautiful Megan yesterday and realized it had been a while since we had heard from her♡♡~Truly sorry for her passing from this temporary earth.
My heart hurts so much for all her LOVED Ones and know her "Sunshiny Magical Laugh" will be MISSED every, single day...Fly High, Fully Healed Forever with Our Lord Jesus☆☆!!
(Lotsa LUV from Holly in Arizona:)
Was thinking about her today, gutted to learn she's departed this world. Hope she's enjoying all the sugar cane and cinnamon wherever she is 💫
beware of toxic positivity everyone. it’s ok to have moments to cry, to be a little off, to show fear and sadness. it’s ok.
we are with you, friend💐
Ohhh Megan.....I am so sorry you lost your battle with the demon cancer....thats on one hand, on the other I'm happy you are out of the pain and torture of this terrible disease. My husband and I have been fighting his esophageal cancer for 17 months now, now he is stage 4 and doing the chemo and immunotherapy...this is his last chance ditch effort to just try to bide him a little more time. I wish you were still here on this planet with us...we need your positivity, your honesty, that beautiful laugh and smile and so much more.
It is rough dealing with chronic illness. I have stage 4 metastatic breast cancer and struggle with several problems. Most days I don't want to be around people. I want my friends and family to let me know they care but I don't want them around me all the time. Part of it is as you said: side effects of meds. I don't feel like putting on makeup. I feel like crap. It's all I can do to eat and nap and maybe pick up a book to read. My biggest problems are diarrhea (no matter what I eat or drink) and constant overwhelming fatigue. I'm on meds to shrink my tumors (they're working) and my cancer hasn't metastasized further. It's ok to feel bad and crummy sometimes. At least it doesn't last for the most part. It's hard alternating between depression and loneliness vs wanting to be around people and finding joy in life. I do the best I can considering my dismal diagnosis.
You mentioned skin problems. I already have psoriasis and now have weird eczema on my arms, too. Never had it before but it's maddening. And different from the mild psoriasis I've had.
Hang in there, TYP. Stay strong and feel what you feel and don't apologize for it. HUGS.
Megan you are awesome. I cried when you explained your husband taking you out to see the tulips in bloom…so beautiful but bittersweet
Thank you for all the courage. I’m so sadden to hear of her passing
My husband died 8 months ago from same cancer as you but he was in his mid 60's. He got sick was in bed most of the time just felt awful but never had pain with it.from the day he got sick till he passed it was 7 months. By the time drs. Figured out what he had he was to far gone for treatments. We cried together everyday but we also laughed alot too. He didnt want to leave me and i miss him sooooooo much. Keep your chin up and enjoy all the little things in life especially family you can do this.
I had bile duct cancer stage 4 which was diagonised before 3 months.i am 31 years old and worried about my family.God give strength to my family after my lose.please anyone find a medicine soon.she fought a brave battle against this disease.she is a great women.
I’m sorry you’re in pain. It sucks. My perspective is sharing your feelings lightens the heaviness sometimes and allows others to connect wiyh your experience and support you.
I have a friend fighting bile duct cancer and I found Megan’s videos. It would have been an honor to pray for her but I’m praying for her family now%. Beautiful lady and soul. I’m better off for watching her videos ~ what a gift for people who are fighting❤️
Hope you are doing okay? You stated you are having a rough week or two. You haven’t posted a new video since this on. Praying for you and praying you are doing okay! I have Cholangiocarcinoma and I understand the fatigue that puts things off; I utilized my energy for what’s a priority in my life, spending time with my family and friends. Focusing on my treatment and staying alive so grateful for the quality of time I have and still do have; staying positive is a daily priorityI 😊trust in the Lords plan
Been thinking about you. I hope that you are doing well. Continued prayers.
Hello beautiful. Diagnosed stage 4 chalongiocarcinoma with Mets 3/22 You are strong!!! Thank you for coming on here and telling your story! I appreciate you. ❤❤❤❤❤❤❤❤❤❤❤
God bless you, I hope you're still ok ❤
I wish you from the bottom of my heart that you can continue immunotherapy to eliminate the cancer. I think that the side effects are so strong for you because the therapy is fully effective. The wigs look good on you, but we love you too without it. Try to stay strong (but tears are allowed !!). We are with you and thinking of you.🥰💞
I had to pause the video just to say you have the most amazing personality and laugh!!
You have a joy in your spirit that I see in the midst of pain and suffering, what a blessing that is...most people never learn how to experience true joy in the midst of that.
RIP Megan I’m so sorry.you were such a lovely lady. My husband died of the same thing.from start to finish it was 18ths. It’s such a horrible cancer. Godbless.xx❤️🙏🏻💐🇬🇧
Sweetie this is so common with immunology therapy it’s rough I mean it should be called the BEAST
You are doing amazing still
Hang in there behind you 💯 ❤
Hey beautiful I’m glad to hear from you! Thank you for coming on 🦋💜
I just found you and even with cancer and skin health issues, you are such a positive sassy lovely person with so much heart and so much personality. Your family, you husband and your friends are so lucky to have you in their lives. You I truly wished I had the ability to kick your cancers butt to where you don't have that concern in your life. Alas I am not the guru that can get rid of cancer but I wished I could.
Sweetie, enjoy a movie, good song, but do something that you will enjoy. I think you are an awesome lady and I wish you the best days ever that's still to happen.....looking forward to another vlog from you. Take care,
sending hugs and love to you.💕
Thank you for being real. I've been dealing with painful arthritis in my legs and hands ever since I had covid. It's very hard mentally cause I don't know if it's permanent pain or whether it will get better. I also have days where I throw myself a pity party. We're human and not perfect and just trying to survive here the best we can
I’m so sorry you are going through this, it’s so hard. My husband is remission from his cancer but it’s hard to forget all he has gone through the treatments are brutal!
I'm glad immunotherapy is improving your health !!! and of course you should give yourself the time to channel your emotions, it's good to keep your mental strength through your journey, but in order for it you would need breaks, it's human to feel low sometimes and helps to go back up again to embrace your downs too. Sending blessings your way, I watch a lot of videos of people going through cancer because it's something that scares me a lot if that would happen to me, but I somehow can't help not watch their experiences, and I think it's because how brave and strong they seem to me because they're going through what scares me and still manage to keep on going with life and treatments and all, I admire that deeply. I hope you get better ❤
Oh sweet Megan. I am so sorry that your skin is rebelling right now. Painful skin conditions are no joke. I hope the prednisone helps. I have heard of other people with skin issues with immunotherapy. It sounds like your skin could be weeping from the fluid as well. I love your wigs. You are in my thoughts. Much love.
You're in my prayers, ma'am. May God light your way through this journey.
Hi sweetie! I have a chronic disease known as Microscopic Colitis. I am in remission after some very intense months recently including covid and one of my worst flares. I have a very limited diet. Been on steroids nearly two years and have arthritis and insomnia, among other side effects, as a result. I work close to full time at a Supermarket Starbucks at 48, which has proven difficult difficult. I have to take many days and even weeks off during flares. I recently ran into your page. I love your outlook and energy despite all you're going through. I pray for your comfort and that you respond well to your treatments. All my best wishes from sunny California!
I am so sorry for the things you are going through. My sun is the same age as you. So I'd cry my eyes out when I saw you're video's. I immediately put you on my pray list and know God will send His angels to protect you. Thank you for sharing you're story with us. God protect and protect you😢❤❤
You have the most beautiful, infectious laugh in spite of everything you have to deal with. Praying for you. 🙏
I just started following your story but I wanted to let you know that you are in my prayers.
Just checking on you!!!
Been thinking of you recently. Hope you are doing ok. ❤️
my love thank you for your courage strength and bravery. to be exactly as we are is authentic living. From a cancer survivor and chronic pain experiencer. thank you for being you.
Thinking about you and hope your doing ok. ❤️
So heartbroken, she is amazing .
I stumbled across your blog tonight, after having a rough day. Actually I don’t think it was by accident…I find your voice so calming and hearing your journey made me sad but I think you have a lot to give not only to others but for yourself. You are an inspiration of strength, courage and finding joy in the small things in life. The trees, tulips, dog walks and of course the pica colada. Thanks for reminding me to smell the roses. And I hope this makes sense sometimes with meds I’m confused. Thank you…stay well, prayers for you. 🙏🕯🤍
I’ve followed you for a while but never commented. I’m so sorry you are going through all this and the pain. You are such a lovely person. I hope the pain starts to lessen. Please know I’m sending you positive thoughts! You are a beautiful person.
I was happy to see a vlog from you. I am sorry you are having a bad week. I know the bad times can be overwhelming. I went through cancer treatments 2 years ago. I handled it well most of the time, but when I needed to cry, I cried. When I was angry, I let myself feel the anger. Holding it all in is no good. You're in my prayers.
Overall really GREAT news! I’m so happy to hear that overall the trial is panning out to be successful. Side effects do really suck, and it’s human to have frustrating bad days. Keep up your fight; there are still A LOT of years ahead of you. You’ve already beat the numerical odds, now it’s time to forget today and look forward to tomorrow. I can’t wait for another 3 years to pass for you post a video of your 40th birthday with a full head of hair and clear skin!
Thinking about you ❤
Beautiful warrior
Sending you prayers and encouragement from Texas❤ your family sounds Amazing I totally agree our 4 legged family members are the BEST ❤
Your video popped up in my feed. I hope you are doing well. It's been a while.
Your video just popped up, on my feed. God bless you my dear, and I will definitely pray for you. 🙏🏿💜
I'm so sorry I wish there was something I could do I appreciate you sharing your journey still and educating me. I truly hope things get better for you in some way soon.❤
My thoughts are with you. Your smile is amazing! ❤️
I'm sending you healing white light ✨️ ❤
Connect with Jenny Apple. She had issues with this treatment as well. So glad to hear your scan results are looking up!
She was so adorable 😢
I first learned of your story through your husband's article in the most recent PWI issue. I have already watched all of your videos and praise you for your strength and courage. I myself have been living for 6 years with Kidney disease (currently working at 3%) and seeing the strength people like you display is absolutely heartwarming. I am surrounded by people who say "if you need to talk...." which is awesome, but I do not walk around feeling sorry for myself and a huge reason for that is people like you. Keep it up, you are a true inspiration.
She came across as a super nice person. Shit man this sucks bad
Please hang in there! I’m so excited to see you!
You are such a wonderful person with an awesome mindset. I love how you put things into perspective. I just found you tonight. You popped up on my algorithm. You feel like I’ve known you for years, you are just that relatable. So I subscribed to you. I’m hugely sorry for the struggles you have been and continue to go through. I just realized how many times I used the word “You” in my comment to You, lol. I’m certain that is happening because you are such a wonderfully inspirational person! I’m looking so forward to hearing more from you and following your Journey. Take care! 🤗
We are with you girl ❤😊
I am happy to hear about your latest test results. I am sorry to hear about your recent difficult days.
We love you. Lots of love and prayers for you.
Concerned!!! Much love to you.❤❤❤❤❤❤❤
Aww I just saw her video today and fell in love with her iim sad God bless her
You are really amazing. ❤
Her husband posted on 9/11 that he was in the hospital with her as she continues her battle. 😢
Thank you for the update. Praying and thinking about her ❤
Where did he post? Was it somewhere else like Instagram or something? I’ve really come to like her and I’ve been hoping all this time that all of these treatments is going to help her. She seems like you’re such a kind and dear person. Thank you for the update. And if you think of it, let me know where you saw that he had posted anything. I really appreciate it.
@@AlwayslearnimgYes. I was wondering the same thing.
Posted where?
Is there any update?
Sending prayers and healing to you
I’ve been following you for a while. I am so happy to see you again! Btw, the wigs are sooo fantastic! You look great both with your hat and your wigs. Prayers and thoughts from LA.
You are amazing. ❤
Wow I missed you so much❤️❤️❤️ pain is very difficult to withstand and not have crying days 🤯 l always appreciate your videos, very much!!!! Xoxo 🤞🤞🌸✌️❤️ I hope your symptoms get better asap🤞
best wishes for you, you have a beautiful soul, i can tell.
Just found your channel. Thank you for sharing your journey! Glad your tumors are shrinking from the immunotherapy. Love your laugh and hope you continue to have good results from your treatment!! ❤️❤️❤️
You are adorable and I pray you having healing and many more years to come. You definitely appreciate all the little things (wow u just said that after I wrote that) I’m still in the midst of the video. I’m sorry you are going through this.
Thank you, Megan, for being so open about all you're going through. You help me and I'm sure so many others with each update you make. Someone commented re "toxic positivity." That phrase hits the nail on the head. I'm all for seeing the miracles all around us and being grateful for what we can do. But we've gotta express the anger, the sadness, the frustration, really any feelings we have. They poison us if we don't.
You're rockin' that cap. Am glad to hear that people are responding to you with kindness and support. It can be hard to accept help. It's easier if I look at things from other peoples point of view.
I so admire you and love you for making yourself so vulnerable to us. I hope you know how powerful and supportive you are. Thank you.
Will be praying for your healing in all sorts of well being. Love, Eileen
So glad you have Baxter.
God bless you praying for God to place his healing hands on you
Rest now sweet Megan 😢🙏🏼❤️
She passed away??
@@Outlaw2308 yes, sadly she did
God bless you i pray you are soaring above and reunited with all those that past before that love you.. beautiful kind woman.. GOD BLESS YOU
hiiii! great seeing you…now to watch your vid❤️🩹
Praying for you in Jesus name!
Hang in there, and keep that beautiful laugh! Hugs from New Zealand ❤️❤️❤️
PS - the hair looks kinda funky & cool 😀
Hope you're doing well?? Haven't heard from you in awhile
I think it’s ridiculous to expect people who are ill to be positive all the time. To me it shows no understanding of what they are going through. If we could be positive all the time,we wouldn’t need coping mechanisms would we.? God Bless,hon.❤
❤️you and REM
Miss you, hope to hear from you soon
🙏🏽
Listen to the REM song Find the River. It’s beautiful. Also, I’m praying for you.
I'm in your corner too.
Hi, any updates on your condition?
🙏
Is there any news? I want so
much for you to be well!!! ❤❤
Idk uf u remember me ...we emailed at the beginning of our dx. And i had up to 7 tumors in my liver. It was due to y90. But after a clean pet scan hey still want me to continue w cisplatin gemacidebine and ive decided nit to. Cause i cant handle the meds anymore. 3 yrs ago. And ya i got the same hairstyle girl. But i did shave it .
So sad to read this. Megan and I communicated via email. I went thru over 33 rounds of chemotherapy and a radiation by Y90. I decided as it has metastasized that I'm in hospice. I've got 6 to 8 mo. Loved seeing her face and the kitties. I'll meet her ...I'm happy.
But yes side effects just suck!
I'm still so sad but so will never ever forget her.
How are you doing? I'm worried about you 🥺
Have you heard anything? It’s been over 4 months now!
@@rival121I am very worried as well. I hope that she is doing okay.
❤
💜
ANY UPDATE ..🤔
Where did you get your wigs from? Thanks
Hugs
Megan, I was just thinking about you and hadn't had an update from you in a while. I hope you are doing okay.
❤🙏❤️
I was listening to a Mayo clinic Dr speak about surgery & liver transplantation for yout type of cancer. Are you a candidate for either of those options? I then got a TH-cam suggestion of a patient speaking about a clinical trial with Keytruda. I'm thinking about you & sending you ❤.
This was hard for me to watch. She seemed like such a nice person.
how are you doing, haven't seen you in awhile.