Living with a Rare Cancer (Myelofibrosis) | Mary’s Story | The Patient Story
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- čas přidán 28. 06. 2024
- “Listen to your gut. Listen to yourself, you know, your body better than anybody. Be persistent if you're not listened to, find an MPN specialist.”
The cancer experience is so much more than dealing with the physical impacts of treatment and side effects, it can take a big toll on the mental and emotional health. That’s what Mary focuses on in this third and final segment of her series on her rare cancer diagnosis of primary myelofibrosis.
Thank you for sharing your story, Mary!
In this Series: Our 3-part series with Mary covers everything from getting diagnosed with a rare cancer (this video), the ups and downs of going through myelofibrosis treatment, including Pegasys and hydroxyurea, and the impact of living with a rare cancer.
Videos:
1) Getting diagnosed with a rare cancer: • Getting Diagnosed with...
2) Myelofibrosis Treatment & Side Effects (Pegasys, Hydroxyurea): • How I Got Through Canc...
3) Living with a rare cancer (myelofibrosis): (This Video)
Full story & transcript → Updated Soon at www.ThePatientStory.com
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The interview has only been edited for clarity.
Contents of this video:
00:00 - Intro
01:04 - Last message on patient advocacy
02:18 - Dealing with uncertainty of cancer
12:55 - What it means to be in pain
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#thepatientstory #myelofibrosis #rarecancers #patientstories #cancerstories #cancerpatient #cancersurvivor #MPN #myeloproliferativeneoplasms #MF #ET #PV #bloodcancer
My daughter's boyfriend of 6 years dumped her when she got sick and was diagnosed with MS, demanding they sell their home immediately She was devastated, but in retrospect he did her a favour quitting at the start - he was a huge source of stress for her and she quickly realised she would miss their flat more than him!
I created a self contained flat in my home for her as she's too ill to work, and she's happy in her little nest with her two cats ❤️
the fact that you still get shocked when men leave you 🤣🤣you're so naive.
What a beautiful human being this woman is , I applaud your bravery, empathy and kindness Mary I wish you all the best for your future , sending love ❤
This amazing woman is … I’m speechless! What a lovely soul!! Live life!!! Love life!!!
I like this interview so much, it’s so in depth not just the cancer but also the ways dealing around cancer personally and emotionally.
My dear late father fought cancer twice and at 90 he still showed us to have hope, he was strong till the very, all through his chemo, he never once complained, he has taught me that life is not to be taken granted for.
“Its a great life, it might not be as long as I had hoped it would be, but I’m going to ensure it continues to be a great life even if it’s a shortened life…..use your time well lady”. Remembered those words when I had lymphoma and still try and live by that. Such wise and inspirational words. 💪
Sending love and prayers 🙏 to each one of you that is battling this disease !I'm right there with you guys 🙏 be vigilant out there ! Most of all...... NEVER give up 🙏🙏 and be blessed to be here each day that we have
Thank you, Mary! And thank you Stephanie for bringing Mary's story!
You are so welcome!-Stephanie
All three segments of this interview were wonderful, but eye-opening. Mary, you are one incredible woman. Your approach and mindset of living with cancer and life is awe-inspiring. I wish you nothing but the very best.
Mary my step-father is 83 years old he was diagnosed when he was in his 30's. The way you're living you will be here in your 90's. God says so when it's our time to leave here.
I’m so thankful to be near Philadelphia and the University of Pennsylvania which has a fabulous MPN department
This has been the best interview on this channel.
Bravo to you Mary! For being your own advocate and sharing your story so people know how important that is! I have been to see doctors who were incompetent and I tell them....I know you know a lot about biology, but I know MY body better than anyone else. It is sad we have to wait so long for a definitive diagnosis! Hope you are doing well. And I admire your realistic thinking and courage to face life head on and remain a self-determined strong smart woman!!
thank you for sharing your story. I was diagnosed with an NPN in 2019, my haematologist has me on a watching brief not sure which type but probably myelofibrosis. Main symptoms fatigue and weight loss. you are an inspiration and I wish you well. From Perth, Western Australia 🇦🇺
You are such a well spoken person, and make it pleasant to know you despite your situation. God bless you !
Wow…your sentiments are so beautiful and absolutely amazing! Thank you for sharing. ❤❤
Mary you are such a precious person you are amaizing I'm going to remember you Mary you are incredible and Stephanie thank you so much for sharing your awesome vids that are so connecting us all thank you ❤
Wonderful interview with Mary! Hope you'll do a check up interview with her later on ❤
In Canada you have to have a Referral to a Specialist in order to see one, sometimes when asking your own Primary Doctor to make the Referral it can be so frustrating because often times they say Nothing indicates that you need to see a specialist and basically Doctors are Gaslighting Patients , no matter how many times I pleaded with my doctor to send me to a Specialist he wouldn't even listen I can't switch doctors either like everyone suggests I do because I live in a Remote area where there is only one Doctor. Four years went by and finally I was able to get help from a doctor online and he sent me for two MRI but by that time both of my Shoulder joints were severely damaged and I have Osteopenia. I kept insisting it wasn't fibromyalgia but my please fell on Deaf ears.
You bring up such important points we've heard from many patients! We know ourselves and our bodies best - hoping the paradigm shifts so that we not only advocate more for ourselves, but are listened to more easily and frequently. Thank you so much for sharing your experience. -Stephanie
Mary seems like a truly wonderful person!
Clarifying your diagnosis did more than provide you with relief. It allowed you to participate in your treatment and set realistic expectations for the future. It is beautiful how you gained such amazing insight and such a meaningful mindfulness about how you decided to live the rest of your life. Like you essentially said, no one is getting out of this life alive. You are a true inspiration, Mary. Thanks again for sharing your story!
Beautiful interview and woman. The song she mentioned is by Tim Mcgraw. Live Like You Were Dying. Give it a listen.
Mary, if you haven't done your Ted Talk yet, I hope you will seriously consider doing one!!!
Thank You. I'm 41 and just sort of received my diagnosis last week...in very much the same backwards type way of way. "oh no you don't have it" says the check in nurse. Only to immediately be followed up with "Yep you have it. But don't worry it's the good kind of cancer that progresses slowly and you just take a pill once a day for". No mention of chemo. Just take this pill hydroxyurea. And even tho your ct clearly states your spleen is enlarged, it's not. No need to worry that your cousin was diagnosed in 2017 when she was 42 and didn't see her next birthday.
Your message struck it close when I came home to share the info with my boyfriend of the last five years. He reacted by stealing my cell phone so I can't neither go to work or communicate with them or my medical team. Sure do wish my best friend could have been friends with more than just himself, if even that. But in the end, he wasn't going to help me be healthy enough to fight with all I got.
Thanks for your insights and words of strength. Your story helped me change my focus and direction going into this.
Kitty, so glad to hear Mary's story helped you and that it resonated. Sending you hugs, light, and love. ❤️Stephanie
Kitty, would you contact me if you're interested in sharing your story? If so, please emailme: stephanie@thepatientstory.com. Thank you!
My mum has just Diec from myelofibrosis
My primary myelofibrosis left me with battery with a 50 per cent charge everyday! As for energy i couldn’t be a CEO physically or mentally. I make my legacy in my garden which really empowers me to GO but who am i kidding!! When you arr drained and tired and looking from the bottom of a barrel I just give up and position myself in a fetal position and take a nap. As for embarrassing gizmo it’s not for me! I pace myself everyday…lately my sleep pattern is all over the place and i have no control…yikes
Kenny, thanks for taking the time to share your own experience. I'd love to feature you if you're interested in sharing your story. If so, please fill out our intro survey and I'll be in touch soon.
→ thepatientstory.typeform.com/to/OJfTUC
Thank you, Stephanie
Hi Kenny, I got your replies, thank you! The email you listed does not work - can you email me at stephanie@thepatientstory.com? Thank you!