How I Got Through Cancer Treatment & Side Effects (Small Lymphocytic Lymphoma SLL) | Nadia K.
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- čas přidán 30. 06. 2024
- In the final episode of our conversation with Nadia, who shares how she was dismissed by doctors over and over again from diagnosis through making treatment decisions, she talks about the actual treatment and how she got through the side effects.
Thank you, Nadia, for sharing your story with us to help others.
Full story & transcript → www.thepatientstory.com/cance...
Video Series:
1) Doctors Dismissed Me Over & Over Again (Medical Gaslighting): • Cancer Patient Story: ...
2) Self-Advocacy: Pushing for Cancer Treatment: • Self-Advocacy: I Had t...
3) Small Lymphocytic Lymphoma (SLL) treatment & side effects: This Video
The interview has only been edited for clarity.
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Contents of this video:
00:00 - Intro
00:05 - SLL Treatment & Sideeffects
06:54 - The Ibrutinib Regimen
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#sll #smalllymphocyticlymphomia #leukemia #bloodcancer #LLS #thepatientstory #patientstories #cancerstories #cancerpatient #cancersurvivor
What has helped with your side effects? Did a medication switch help? Leave us a comment below 👇
What chemo was she on before Imbruvica pills? I took it for years with no side effects. I’m on my 13th battle with Non Hodgkin’s lymphoma in 20 years. Lots of chemo before. Plenty of Rituxan (a monoclonal antibody) & on a different monoclonal antibody now.
For me. For chemo nausea I took phenegran and later I found that taking plain gelatin capsules helped absorb the excess stomach acid and I took liquid vitamins because my stomach could not absorb vitamins. They gave me kytril for the last few. It helped but.
I also drank one thimble full of merlot with dinner after chemo.
I remember feeling like two hands had reached in the back and squeezed out my ovaries like sponges. Makes your eyes pop out. Then about six weeks after chemo, I sneezed and had a bloody nose that bled for hours. Then I saw I was getting pink eye. I called in a Rx and a family member went to get it. I lay down & took a nap. When I woke up and looked in the mirror it looked like two bowls of fresh liver. I had Hemorrhagic pink eye. Got the eye med. Went to take a shower and blood started pouring out of my uterus. I'd never bled like that before. I'm thinking by now I had ebola. My hormones came back in a rage. They sputtered after that though.
@@user-ii4zf5iq3t 🥺 OMG!
Terrifying..
@@dawntownsendable I am sorry to hear about your long battle with NHL. My mom battled Large B Cell for almost 10 years. My thoughts and prayers are with you! 💛🙏🏼
AMEN!!! CURRENTLY FIGHTING FOR PROPER CARE HERE IN THE USA
I'm a doctor - I just graduated from medschool two months ago. all my life, i'd been having stomach aches that were dismissed as "she's just sensitive" - especially when i was a kid. In my third year of medschool (for clarification, medschool is 6 years in my country) i suddenly got very ill. I went from doctor to doctor, only to be told "just because you study medicine, doesn't mean you're not imagining this", or "it's just a panic attack, calm down". I even overheard doctors saying that they wish I would never graduate, because "sensitives like her aren't fit for the medical world". I kept telling them something was wrong. I spent most of my fifth year of uni inpatient in hospitals - but every time I left without a diagnosis. It took me four years, and a random girl on instagram telling me about this one doctor in another city to finally receive a diagnosis. Turns out, I'm not crazy - i just have two genetic autoinflammatory diseases. Now I'm going to do my absolute best to never become as horrible of a doctor as the people that "treated" me 🙂
They are the arrogant doctors we bump into on occasions who you get once ,then ask for another doctor ,for second opinions ,,,we all come across these holier than thou types
Have you ever watched the movie "The Doctor" with William Hurt?
Check it out.
Eventually doctors can become the patient.
After my experiences with doctors I was so mad especially abt one that entered me into a trial to see if women with a mastectomy had more pain afterwards with regular stitches or with staples. Guess which ones I got. I wanted to go to med school and become a proctologist. I figured I'd get him in the end! rofl.
Another thing, never ever let a crosseyed doctor do surgery on you.
@ Mimi: please, how were you diagnosed? Your symptoms describe my 15 year-old granddaughter these last two years. Her doctor says it's her imagination, or anxiety, or teenage attention-seeking. No tests or treatment have been ordered, nor has she been referred to a gastroenterologist.
@@monicacollins8289 i was diagnosed via a genetic blood test. :-)
This documentary should be shown to every medical personnel in Canada that interacts with a patient.
In the US too…
Absolutely 💯
Agreed. I watched my mother die of cancer while indifferent and incompetent doctors twiddled their thumbs 8 months. Her doctors were useless.
@@ssansu I'm sorry that happen.
There's an extreme lack of compassion within the medical field.
Im hoping all doctors know this information!
May all doctors see this. May Nadia heal.
This woman is so intelligent and articulate. And I agree…this should be ANNUAL mandatory continuing education for doctors. They have to understand that not everybody is coming to the doctor for a simple tummy ache.
This needs to be required viewing for all medical students.
I sent it to my daughter who is a Medical student. Thank you Nadia for sharing. May God Bless. You.
@@lindag1372 The bottom line is LISTENING to patients. Perhaps you could ask your daughter why this is the case, that most doctors do not listen, and report back to us here.
I watched the 3 videos of her story. This is so relatable.
I constantly feel dismissed by doctors.
So much so I started taking my husband with me to my appointments to help advocate for me because no one would listen to me.
A patient's gut feeling about there well-being is more knowledgeable than any hospital director. We can all use a counselor or social worker to help us through uncertain times.
My daughter is going through this. Dr in ER so rude!
Look into naturopathic medicine as well. A naturopath saved my life. Western medicine is big Pharma's bitch, they get kick backs, and therefore blanket perscribe. They care little about diagnostics. The PC or GP, is more like a secretary these days. They look for the path of least resistance, then chuck a pill at you or send you off to a specialist.
I’m so glad your husband at least listens. This poor woman couldn’t even get her family to listen to her, and it is SO hard to push for help alone. Count your blessings that your husband loves you enough to fight for you 🙏
Same here, but I'm 66 y/o with no advocate. I'm gaslighted all the time...even though my lab tests show NINE biomarkers that are abnormal. Nobody cares...in the U.S. Hope you are being treated properly.
Because of my experience of having medical professionals not believe me over and over and sticking to it until I find someone who would believe me, I say to remember, I am HIRING these people to help me manage my health. And, if they don’t serve me, I fire then! I’m paying them to help me and if they fail to do that, they are fired and I look to hire their replacement. That puts me in the power seat which is where I want to be.
Unfortunately there are not a lot of options. It’s hard work to find a doctor especially when you are very I’ll. I’m so impressed with Nadia’s tenacity…she saved her own life.
@@helenpaul4886 Total agree!
Not as easy here in Canada to fire Drs, we have very few, you can be left on a waiting list where I live for 8 years just to get a family Dr, our health "care" system is very broken in Canada
Well said. Great point of view.
That's the right mindset! My first cardiologist only treated me for as long as I was willing to let him milk my wallet without actually helping me, the second and last one was fresh out of school and has yet to learn that when you're a cardiologist your main clientele are fat, old and sick people. I felt like I needed to be sorry for being fat and sick, I can't run 10k every day because I'm sick, but he didn't want to hear that. It was all my fault and he saw no responsibility in himself to help me fix myself, then what was I paying him for? FIRED!
Unfortunately this is very similar to my story and it is very common in Western Countries to be dismissed by GP's and Specialists. I'm in Australia.
I was told that my symptoms, which included, bleeding and bruising, large lymph nodes for months, was caused by my mind and that there was nothing wrong with me. The amount of incompetent and arrogant, dismissing Doctors is astounding.
I'm so glad to hear your story as it gives me the more strength and determination. I now have a great doctor whom is a professor and he is amazing. After two GP's and a number of Specialist's telling me they are not going to diagnose or treat me, I was almost ready to give up and let it kill me.
Thank you ❤️
This is a story that needs national attention. Lack of consistency of care Needs some accountability form medical people involved. Sorry you had to fight the docs and everyone involved.
THIS IS THE NORM...
Most patients are too naive and passive to know that they are being jacked...
This lady is unusual for her intelligence and stamina to deal with these frauds...
THEY ARE "LEGION"....
Couldn’t agree more!
There are so many young male and female patients that kept on returning to their doctor complaining about their symptoms. Doctors told these patients they had anxiety and after waiting year or two their cancer had metastasized.
Said doctors should be held responsible.
@Deanne - Those doctors ought to be sued for sheer negligence and abuse. I have often said that despite all their exams, these doctors were never taught one of the most important lessons of patient care, and that is to listen to the patient, and understand, what he or she is telling you. Then you can investigate the causes of the symptoms,, and utilise the correct protocol. I have lost so much trust in the medical profession, because of misdiagnoses, and because I was treated with disdain, because they did not listen properly, in their arrogance. Look at me! I am the doctor, and I know you have no idea what you’re talking about. You are just a hysterical female, and your anxiety has resulted in an imagined disease/condition! I did not have cancer, but was literally told by a doctor, in a very sarcastic and arrogant manner, to just go and have another blood test, ‘before you die!’ I had Legionnaire’s disease, which can be fatal, and the doctor dismissed me as being a typical hypochondriac! He didn’t listen to me. Had he done so, he would have not misdiagnosed my condition, and he would have sent me for the correct blood test, instead of randomly selecting any old blood test, just to get rid of me! You have to specifically test for Legionnaire’s, otherwise a routine blood test will not pick it up.I went to 8 different doctors, until I got to the 9th one, who listened to me, and immediately suggested that he thought I had Legionnaire’s, and was 90 % positive I had it, as he had been unfortunate to have contracted it, in the past!. He then asked me if I wanted him to start the course of antibiotics, even though I had not been tested for Legionnaire’s, and I gratefully accepted. I started feeling better about two days into the treatment, before the results of the blood tests came back. Unfortunately, I was never able to go back to tell him, as he had emigrated to Canada, of all places. So yes, it appears Canada’s system might be broken, if this is the calibre of doctor entering the system! It is absolutely shocking that these doctors bury their mistakes on a regular basis, and are never held accountable! My daughter had meningo-encephalitis, (a life threatening illness),and was dismissed out of hand by three doctors, who misdiagnosed her, with ‘bad posture, which was causing the headache, a slight migraine and anxiety, causing a headache!’ So having had these experiences in my family, I am extremely reluctant to go to a doctor, although we all need one, when we are seriously ill, unfortunately. I am so pleased that Nadia was persistent, and literally saved her own life. I wish her the very best for the future. Well done Nadia. My daughter saved her own life, by being persistent, and going for another opinion to a doctor, who actually listened to her, and examined her properly, without dismissing her out of hand. She nearly died, and in fact there was a young man of 17 who died of meningo-encephalitis during the time, she was literally fighting for her life.
TRUTH! It's all over CZcams...young cancer patients dying every day. They always give them the SAME OLD THING...(toxic) chemotherapy and strong radiation treatments...which NEVER seem to work. I personally know of 3 people who died from the CHEMOTHERAPY...not the cancer.
OMG, this happened in Canada! SOMETIMES the ANXIETY is caused by the condition, but I agree a hundred percent, do NOT dismiss the patient if they have anxiety. The mere fact that you are being dismissed by doctors through the entire time CAUSES ANXIETY or MORE ANXIETY, right? 😳 👍
This happens everyday everwhere. Unfortunately, there are many negligent doctors.
I’m in Canada. I’m not surprised. I’ve been sick since January '22. I’ve seen doctors when I was in great distress. Their answer:depression, Fibromyalgia, anxiety… MRI, SCANS prescribed but still no call for the exam. I went to the ER because it was so bad. The first MRI saw something on the L2 vertebrae. More tests. Now bloodwork. I was told it looks like bone cancer. Waiting for results from the bloodwork and that can take weeks. Doctors at the ER recognized possible serious issues while the GPs just seem to ignore or assume you are exaggerating. Why were my return visits not taken seriously? I have heard on more than one occasion, doctors saying,"not on my watch" so they just dodge the ball.
I’m in Quebec. It is extremely difficult to have a family doctor, follow-up is just about unheard of. Therefore, every visit is with a different doctor. There are "no" walk-in clinics here. You must "try" to get an appointment by logging on to a website and hoping for the best. Your only access starts at 6AM and if you login at 6:05 it’s too late. All spots are taken. It’s like winning a lottery to get to see a doctor. These appointments are called "sans rendez-vous" meaning no appointment but you need to make an appointment to get a "no-appointment" appointment. Those 5 minute access points are only valid on Saturday and Sunday. I could never get through on weekdays. The answer is always, no places available.
I am thankful to the doctors at the ER for taking me seriously. It is now August 31, '22.
As someone with a lifelong mental illness disability, I feel it is necessary to take it upon myself to be upfront with doctors when I have a medical problem. Such as stating, " I am being treated for my mental illnesses, but this is a new physical symptom that I feel is abnormal and needs to be addressed medically." Don't be embarrassed about it, or shamed, and make sure they know that you know doctors often treat the mentally ill in a dismissive and patronizing manner, and you are not going to have your physical illness ignored or let yourself be patted on the head and sent away without needed testing and diagnosis. I have always gotten respect from doctors when I address this issue head-on. But I am also careful to monitor my behavior more than a patient who is not diagnosed with a mental illness. It's too bad, but I can't act like a flake or a ninny, and let myself get emotionally overwrought in front of them. Just the facts, and I maintain a distance between how I am feeling and how I am acting so they will pay attention and help me like a "regular patient".
@@argusfleibeit1165 Isn't it absolutely ridiculous? In same boat as you 🤨 it's like they use it as a scapegoat to just throw you to the wayside. It seems as if Dr's are becoming less and less aware of "thinking outside the box" (ie: thinking for themselves 🙄).
Their training also leaves a lot to be desired instead of improving. It's 2022...
Not 1822!!!
All the very best to you.
One smart 🤓 cookie!
What drove me utterly insane is that even if it IS anxiety, they should TREAT that. They’ll just go “oh it’s anxiety” and move on. If I truly do have anxiety severe enough to cause significant physical symptoms…maybe we should do something about it.
When I had symptoms that were dismissed, I didn’t really care WHAT was causing them. If they could be fixed by deep breathing, I would just DO THAT. It would infuriate me to no end when I would DO the anxiety treatment/exercise/diet changes/ect, still have symptoms, and just get told “you clearly didn’t ACTUALLY do them.”
Like for example I had asthma which went undiagnosed until I was in my 20s. I’d bring up breathing issues and be told I was just out of shape. So I joined the track team…and it just got worse. By the time I was old enough to change doctors, I was on a competitive dance team and doing CROSSFIT WORKOUTS THREE TIMES A WEEK. And my mom was there to corroborate the fact that I was actually doing this stuff. Still got told I needed to do more cardio.
I get that 95% of people complaining of chest pain and difficulty breathing during exercise are out of shape. But at a certain point, doctors have to recognize that they could in fact be wrong. I feel like most doctors who go “it’s just anxiety” wouldn’t care even if I showed up missing a leg or something.
This needs to be part of training for medical professionals!!! Well done. “Medical Gaslighting” a real problem!!!
Thank you Nadia for your courage and determination. I can imagine the horror of your experience. It brought me to tears. I wish you well and truly hope that the treatments work for you and you enjoy a long healthy life. I, too, was gaslighted for 12-15 years - 6-8 doctors over more than 10 years. I had a disorder that caused anxiety - grave's disease. Everyone, including my therapist, accused me of being a hypochondriac. I went to one of the top diagnosticians in NYC who said there was a "strange antibody" in my blood - probably epstein bar virus. I think he was the head of the EBV foundation. I told him there was thyroid disease in my family and when I was young i, too, had a thyroid disorder. Not one doctor took a thyroid function test. This was 36 years ago - no Google. I finally demanded hormone tests because I was bleeding between cycles. I was told my thyroid levels were off the charts and I could die in two weeks or so because I was on the verge of a thyroid storm and my body would be flooded with thyroid hormone blinding me or causing a massive heart attack. I spent weeks in a library for medical consumers where I found the perfect doctor and treatment. I was so clear about my symptoms and cannot begin to tell you all the things doctors told me as they disregarded those
syptoms.
This woman was treated horrifically by several doctors and was brave and smart to do her own research. She should not have had to beg for a doctor to pursue tests to find the cancer she has., especially when she was so very sick at the time. Sickening that in this day and age there is not a unified global system where every medical office, hospital, lab, etc gets the same automatic digital up to the minute updates on research journal discoveries, protocols, treatment options, financial programs that would give free medications and therapies to every doctor to discuss with their doctors. 💕🙏🏼Bless you Nadia. May your treatments get you well, no one ever mistreat you again, and everyone watch your story and not let another person down in their greatest time of need medically or emotionally! Well done for telling your story so many times at great cost to yourself when you need to be resting and letting your body heal. The stress the medical professional caused you unnecessarily had to worsen you physical pain and anxiety. 💕🙏🏼You’re amazing and lovely in all ways, Nadia. Thank you.
Agree wth everything you said so eloquently.
So brave Nadia. It's really hard to keep pushing for attention when iron levels are so low and you feel so unwell. I'm several years into dealing with trying to find out what all my strange and sometimes quite debilitating symptoms are. But fobbed off as a depressed, anxious and neurotic aging female. It's an easy answer to send a patient on their way. I was very encouraged when Nadia mentioned that the anxiety was the body letting the brain know there is something very wrong. I don't think antidepressants will stop me from getting ill every 2-3 weeks! Post code lotteries exist all over the world with regard to health care systems and drug availability. It's quite an issue. Thank you to The Patient Story and Nadia for sharing.
This is my label now. Even if it’s real, trust me when I say there were many bricks in the road leading me here. I’m just going to avoid going to the doctor if I can. I needed more help than they were willing to give.
I have the same diagnosis as you...depressed, anxious, neurotic aging female, even though my lab tests have NINE abnormal biomarkers and some are VERY concerning(example: severely declining RENAL function). I have a medical background and do a lot of research on PubMed(clinical cases), but I'm still undiagnosed at this point in time.
I’ve watched the complete story now and it really resonates with me. I know something isn’t right. All of my blood work has come back normal. I am hopeful that the neurologist I see in October has some answers.
I am also a person not being believed by the specialists when I complained about my symptoms. It took me over 2 years to convince them. They said "you are right, you have cancer". I think this is common among women, being brushed off. They told me I need to reduce stress, I need to not work too much and not read too much.
I had a medical issue that took its time being resolved, there were conflicts of personalities (someone didn’t like me referring them to human mechanics! Lol) and the one major thing I got out of it was when my gp and I were talking about recovery, she was reading what the drs had “said” in MY records and I yelled out “that conversation NEVER happened “ !! Get copies of everything and hopefully have a second person with you just to be a witness. I totally think every appointment should be recorded for everyone’s protection. Nadia never second guess yourself again! You’re amazing!!!
What an amazing resilient woman you are 💖 My goodness i rode a roller coaster of emotions listening and HEARING your story. I was mad, sad, frustrated, relieved and ever so proud of you in how you pushed so hard to be heard.
I believe your story will help others to fight harder for themselves by not allowing professionals to readily dismiss them in a condescending manner.
I've been dealing with chronic stomach issues for almost13 years now; I can't tell you how upsetting it is to be ignored by people who are *paid* to help. I've been gaslit and manipulated for so long I stopped going to the dr because I was tired of being written off and told "it's all in you head". I was diagnosed with IBS which we all know is a blanket term which translates to "we can't figure out what's wrong with you and I'm not being paid enough to figure it out. Get over it"
You are a warrior!.. such a strong individual! EVERYONE must advocate fir themselves medically. The medical care system here in the US is terribly broken, especially since Covid. God help us all! Unless a diagnosis is fairly simple to find, it seems as though doctors do not want to be bothered. I am still in the midst of finding a diagnosis. I am with one of the supposed ‘top pulmonary’ hospitals in the US. I pushed for 20 months for a biopsy in my lungs to check for infection in mold (extensive family history) Doctor told me that was ridiculous to think. When he finally agreed, guess what?? They found Aspergillis (black mold) in my lungs! I have on going pneumonias because of this, severe shortness of breath, weakness…. Guess what - they WILL not treat it! I am getting sicker and sicker with no help. The treatment is anti fungal meds.. I’m terrified. The western medical system is beyond broken and none of these doctors seem to be held accountable. It is frustrating as well as heartbreaking!
Thank you Nadia for telling your story and I admire your persistence because you knew in your gut something was really wrong with your body .
Your body was telling you , with all the symptoms you had .
We all need to listen to our bodies and do what you did ask the right questions to these so called doctors and believe in ourselves . So happy for you that it turned out well for you . Much love from Scotland 🌸
I am extremely fortunate to have a family doctor who not only listens to me but also practices compassion towards all his patients. He truly embodies "First do no harm". Thanks Dr. Bloom! 😷 😃
Nadia is a force of nature! So wrong that she wasn't heard by Doctors. I will be her - don't give in when you know the Doctor isn't listening. Thankyou for your strength, determination & example of not accepting bad medical practice & practitioners.
Thank you, Nadia for bravely sharing your story! I wish you all the best!!! I watched all three episodes of your story. We all have stories to tell, but some stories are really worth listening to and hearing. This should be required viewing for all medical students. I’m glad you made it through. I’m glad you had one Doctor Who believes in you in you. Sometimes that can make a big difference. I’ve had my own share of gas lighting doctors, overly convincing doctors, domineering doctors and misogynistic doctors in dealing with auto immune disease. Learning to self advocate, care for myself and believe in myself is an ongoing process here.
I've been having bleeds in between cycles, as well as 10 days long, and I've had extreme fatigue, pain, and rashes on my upper legs and upper back, on sides of my neck flares up.. have a few swollen lymph nodes. My doctors look at my history of social phobia and say stress can cause it and anxiety. Changed doctors' surgeries 3 times. Seeing new on on the 21st of February, after a phone call appointment yesterday hopefully this doctor will help me. Xx
I watched all three episodes. I'm sure there are patients in the US who have stories not unlike hers. Fear of malpractice is still a good motivator even as it drives up overall medical health care costs. Maybe when told by doctors that the patient's concerns are just being overly anxious that the patient should say something like, "For the sake of your medical license and you being sued for missing something serious, and all the notoriety in the press and social media, I sure you're right. But just in case, I'm documenting everything in great detail and leaving it with my family for future litigation." I remember taking a student to the ER after she had a seizure on campus. She stayed the night and I asked the doctor (I'm no doctor but once practiced law) if he had ruled out encephalitis. He said no but didn't think the had that. She did as it turned out. This reminds me of Nadia's first thought about lymphoma very early on in her visits to doctors.
Some doctors ,take their job to the enth degree and others are so bombastic,they don't realy listen, and pre judge ,and some were so tired from covid that they need a break,/holiday, others sat at home and did the ozzie way, over the internett,or phone,and found it easyer .
When I had a pain on the side of my body and I wondered what organ might be there, I heard the answer: "spleen" in my mind. Hardly had heard that spleen exist. Googled the location and organ and my inner voice was correct!
So never dismiss that first voice in your head!
Nadia, I understand the trauma based on my own cancer journey, but you are a rock star! I am proud of what you are doing for new patients.
Every person entering the health care field should be made to watch your story ... and maybe annually. See you, feel this, experienced the medical gaslighting and being dismissed as "just anxious". Thank you for speaking out and best to you, Nadia.
Telling ur symptoms over & over must be so challenging . U r a HERO!!❤🙏
Thank you Nadia K for sharing your story. It appears your trusting humble nature was used against you by Narcissistic Medical Professionals. I was a caregiver and Advocate for my Stage 4 Colon Cancer Mother. “Nothing exists if it’s not in writing”, I escalated issues via emails to get treatment and tests done. The underlying threat was always a medical malpractice suit if my enquiries were ignored. This was the same process when I was to be also diagnosed with Follicular lymphoma. I was initially dismissed as healthy until I mentioned my mother’s successful law suit for medical malpractice.
I do. I am currently experiencing the same thing. Thank you, Nadia.
I have something going on and am trying to get diagnosed. I already feel that my primary care doctor is not listening to me, and I was starting to question myself until watching this. Thank you for telling this story. I wish I were in the Canadian health care system instead of the American system. I hope that Nadia is completely healed.
Keep advocating for yourself - it's not easy, but you are the only one who can do this. You've got this. ❤️
The grass isn’t always greener on the otherside!! Don’t wish for socialized medicine!!
@@BJ-bc7sl 100%
Nadia's problems occurred in the Canadian healthcare system.
There are trolls in here sh!tting on free health care. Repugnant
The last doctor that told me the reasons why I shouldn’t Google a condition I said the following- It’s condescending to tell me not to research my symptoms by any resources available to me. I don’t have access to medical manuals. And I’m not a professional but I am very familiar with my own body. More familiar than you. And at least researching what I’m feeling gives me a certain amount of verbiage to be able to articulate what I’m noticing.
Woo hoo,,that's a sensible,thing to say I get to the doctors and jump from one thing to another,,a list to is a help, I always forget, main thing ,to ask ,its because I feel they think I'm a ,panicker,or a hypochondriac,,,which being aware that's what they think ,makes me more ,stutery, they are not God,,,,some treat us as if they are ,and never explain the meds they prescribe ,or if we can help ourselves by eating diferently " drinking more water,not coffee or teas ,or smoothies, and salads also broccoli sprouts that help with the imune system, n cancer lions main mushrooms, Turkey tail all help, ,,its a learning curve,they say now do three days fasting befor chemo to help body fight back,after the imune death,,remake all the imune system ect it's all on the internett its just finding what is true and not enhanced ,to make them money, or make someone a name for themselves,,,,,,sorting the wheat from the chaff
Such an amazing story of persistence of making your voice heard instead of sitting back and accepting what you’re told when your body tells you different 💖
Thank you. Wheww, you've been through the ringer too! I can absolutely relate to all of your story Nadia and too have learned, over the course of many years, that I am my own best advocate.....whether the doctors, nurses, hospitals, etc.....like it or not. I too do a lot of research, consult with other patients, and make suggestions to my doctors on what I think may, or may not, be best for me. I will admit that my greatest concern is the kind of treatment I will receive as I age and am unable to make the wisest decisions for myself.... because as I age, currently 65, and become more disabled, the dismissiveness ( all around me) is even more blatant. I wish you all the best as you work to recover and survive!! And thank you again for being willing to share your story. I hope that even having the opportunity to share it and be heard is healing. Hugs.
I can relate to your fears. I really hope Someone who Cares will back us up if it comes to we can't speak for ourselves. Being able to at least communicate is great & all, but yes; considering how things are Already, I'm hoping to bring in loving, compassionate, trustworthy Help. For All of us. Keep taking care of yourself, keep fighting for yourself, you're worth it❤️👍
Nadia! I did chemo at BC Cancer and I relate to so much of your story. Thank you for sharing your experience for those of us who have no fight left.
Please try the mushroom course, by Paul stemets, it saved his mum it's worth a try and fasting is good ,and veg natural foods,
Thank you Nadia for sharing this. Is awful, not only the disease, but also not being believed.
Omg everything that you have gone through. You are very very strong.
Her story is so similar to mine. I have 2 cancers and many autoimmune… ignored for so long. Still to this day when I talk about things that are happening medically I am told I should “just be happy I am still alive” I have given up that I will get good medical care. I have tried different doctors, spent so much money just in travel cost trying to find a doctor who will just do their job… I have no faith I will find a better doctor who will be the medical detective I need.
Thank you for being strong in telling your story. It's appalling that some doctors don't take patients seriously. You are a strong beautiful woman I am sure you will beat this. Thank you xxx
I’m so happy that you stayed strong!!!!
She's such a strong soul! So proud of Nadia! Xx
Thank you for letting everyone hear your voice
I'm sorry for your pain I pray 🙏🏻 for your fast recovery
Thank you so much for taking the time to share your story with all of us! It gives me hope that maybe soon I will find someone who will listen to me after the malpractice that I have had done to me and 10 years of fighting for help on a few other things. I do as well have severe medical PTSD from all the things that have happened and that are still happening to me. Thank you again for sharing your story. Be well and have the most beautiful life hun!
After having a doctor nearly kill me (medical gaslighting - go figure) for 2 months over a very serious health issue, I will NEVER again take a doctor's word for anything without actually seeing results. Not just results, but knowing that the right checks have been carried out. We shouldn't have to be doctors (thankfully I am an ex nurse though), that's THEIR job! Thankfully, I've since registered with a different doctor and gone down the potential cancer investigation route twice more since the original issue I mentioned. I have a fantastic GP who understands why I get anxious about health stuff and so she is patient, kind and books tests, but then I have other health staff who totally gaslight me and send me right back to square one. I never complained about my original doctor and you have no idea how angry I feel about that!
Thanks for your story. I’m glad you are getting better. You look great.
I'm so glad I stumbled upon her story.. Once I started, i had to see her story til the end. There were so many times I wish I could have hugged her as she was retelling her story. I can relate at this moment bec i have to be my mom's advocate as she is going through her own mystery illness that doctors dismiss. Please...i just hope her story can be retold by other media outlets bec it's so necessary to bring strength to other suffering people.
Yes, your story & work for yourself resonates with me, and it is encouraging to energize me for another round of self-advocating.
Oh my gosh so sad for the struggles you have had 😢. The incompetence of the medicos. You are one strong and courageous woman thank you for sharing your story with us 💕🥰
All the dismissive doctors were acting in stark conflict with the medical ethics. The medical ethics should be the most important thing for the doctor, patient and his wellbeing on the first place. They are bad doctors viewing from this lense. They are also bad quality people - lazy and unconscientious workers. It is a tragedy that they became doctors.
You have provided such a gift to others who deal with this and other rare diseases and disorders. I am so sorry it was such an arduous journey. Thank you for your ability to read and reason but also communicate with the medical profession. Such a good use of social media. Others will be able to look up your story with a few key strokes. May be even some doctors!
Bless you so brave and a true warrior xx
Thank you so much for sharing!❤ Has put a fire in me to proceed with my own health issues. And you are 100% right.... if something doesn't feel right, you need to keep talking so that you can get an answer!!!
I wish you well especially after the horror story of your journey to diagnosis. I would be making those doctors that dismissed you and your symptoms accountable, so that doesn’t happen again. Thank you for taking the time to tell us your story. ❤🤗
My heart goes out to Nadia, may she continue to do well on the newest medication, and never be dismissed again as a patient or human being, ever again! Bless you!
Thank you Nadia fir your courageous sharing. I am shocked by how much you had to cope with, in order to be believed and start the appropriate treatment.
Have you considered suing any of the medical personnel for malpractice?
Watching your videos has reminded me of some of the emotions that I experienced when I was diagnosed in late 2010 with HER2-positive grade 3 breast cancer. Fortunately, I was given excellent care and I am cancer-free today. I so admire you for how you looked after your needs and kept your sanity. You are an inspiration.
All the best going forward,
Iona
Thank you for your courage during this very difficult period to fight. For the person who inspired you to fight for yourself. Thank you for helping so many sick people out there who cannot speak for themselves.
Thank you much for sharing this shocking yet common story. Your persistence is amazing during the fight for your life. May God Bless and Heal you.✝️🙏
Loved your story and how you advocated for yourself and did your research yourself! I commented on the second video, but I forgot to say that I also was treated differently by certain doctors when they found out I had anxiety and depression. I don’t always tell doctors now because they do judge you.
Incredible woman. Bless her heart❤️
Wow! Thank you so much for sharing all of this!
Thank you for sharing your story, this was a powerful narrative.
🙏
Good luck Nadia!
Serious physical conditions often cause mental health issues, even if the patient doesn’t know they even have that physical condition. It’s the body’s way of telling us there is something seriously wrong.
Wishing you well and thank you for sharing and fighting 🙏
Very good segment. It would be nice to get answers update on her health now.
Thank you for sharing this story.
agree whole heartedly. thank you!
Doctor are so full of themselves that, even seeing this story won’t change them…..their ego is too big to get out the way. I know for sure it will help us as patient to push and stand up for ourselves.
Thank you Nadia, for your experience and perserverence. You are beautiful and I am sure God will bless you with a long and healthy life.
Nadia is so sweet and intelligent.
Nadia - thank you so much for sharing your journey so far with the healthcare system. I am truly sorry that you’ve had to experience traumas via medical professionals who are supposed to be there to help and support. Thankful though that you did find a few medical providers that truly listened and advocated for you as a patient. It makes a world of difference to have this sort of support, especially when going through a time filled with worry and so many unknowns. I’m currently going through a couple years of unexplained symptoms, going to the doctors, and testing returning fairly normal. So, I can relate to a lot of what you said in your video of how you felt during the process. Your story though has put a little more wind under my sail to continue my journey in hopes that I can find true healing in my body. I wish the same for you Nadia - that you find true healing in your body and that you continue to receive the support, compassionate listening, and kindness from medical professionals that we all deserve. Blessings to you. ☺️🙏✨
Courtney- keep going! It took me several years, multiple misdiagnosis, 7 months of low dose chemo (erroneously), being called crazy etc. Then I found my Wizard who told me he wouldn’t leave me, would figure it out and knew I wasn’t making up my symptoms. He did. He cracked the code. I am one of approx 7-8,000 cases worldwide. One of the things he told me early on was that, “If you keep asking the same question and getting normal labs, 1).you either have an input error (i.e. you aren’t listening to the patient or looking at the history) or 2).you’re asking the wrong questions (ordering the wrong tests/looking for the wrong thing, see previous point #1). Most physicians have a 10-15min slot and a 14min ego. So make sure you make your care center stage! ✨
@@deeceepnw Thank you for your kind words DeeCeePNW! It saddens me that so many of us have had these experiences at the hands of the medical field, but I know there are competent, wonderful MDs and other medical professionals out there (like your Wizard!). I think he is spot on with his advice about repeatedly getting normal labs, yet have chronic unexplained symptoms. And your comment about MDs and their time slots vs ego constraints made me laugh! Thanks again for your kind words, and many blessings to you. 🦋✨
Thank you for sharing. 🙏 I Hope you continue to recover rapidly. God bless.
Thank you for sharing. I'm.so sad you were not believed and supported.
Thank you for your support of Nadia. ❤️
Thank you for your story!!!
Thank you so much for sharing your story, Nadia. Glad you're on the road to recovery! I hope you will write a book about your experience.
Well said to respect informed patients
I am sorry for ur frustrations for with the medical system.
Nadia so sorry you were side lined by the doctors who wouldn't take you seriously, they are a disgrace to the profession, so happy the therapist and the kind doctor had your back. Hope you got back to all the things in life that bring you joy. Love from Sydney, Australia.
Too many doctors have this attitude today. I am going though the same thing just different diagnosis.
Best wishes to you and your future.
I wish u a long & healthy life.❤🙏
Nadia thank you for sharing your journey so inspiring. God's blessings and complete healing upon you ❤️🙏🙏
And in fact, very serious physical conditions can be an underlying cause of mental illnesses. They KNOW this, and yet still dismiss anxious, depressed, and traumatized patients.
Nadia God bless you. You looks incredible. Thank you to share your story. Continue your healing. 😘👍
A lot of people turn to Google because the medical system or their doctors directly have failed them. If you can't afford their fees OR the doctor doesn't take the time to help you or explain what you're worried about, what else is a person supposed to do? Doctors need to understand that and take that into their consideration, not just dismiss.
The problem in England is we have spent so much on vacines and not used half of them,, at a cost to us, thousands for gloves ect from a politician s contact who had no experience,of medical knowledge of ppe, , gloves masks hand gels money spent what did we get back ,who made the profit out of that contracts ,we are so low on cash now, that our health service is strugleing, all to do with mis management,who is ripping us off who is doing the buying and who is getting best deals for the money ,,,saara and how does an,office manager imbezel enough money to run a stable and by designer clothes from NHS money,, How
Another caveat: when I was first a nurse in the US there was no managed care, insurance dictating care, PPOs dictating care, the lowest bidder offering for minimal care etc. etc. It is because of those who submitted fraudulent claims that all of the payers crack down on even people who have legitimate health concerns and diagnoses. Because of the bad actors we have to fight our way to get the care we need. I am always willing to advocate and submit rebuttals or claims denial letters for those in need. I know this also… If you wear them out with communication they will give in eventually. I mean it’s what they tried to do to the pain. Deny deny deny so the patient will give up. sad but true 😞
People wouldn’t feel so tempted to google and self-diagnose if doctors actually listened and stopped delaying treatment for things. Amazing how that works, isn’t it?
I hear you! I was going through the same thing for over a year and now I’m finally going to see an oncologist.
Oh, I forgot to say to that the picture of you hugging the tree, and in the crevice of the tree are absolutely beautiful pictures!!
I've gone through much of the same. I have so much respect for Nadia because she was strong enough to weather this storm and fight. That's not what I feel up to. Quite frankly, I'm ok with dying on my own terms. I will never ever again seek medical help. If I have a compound fracture where my bone is sticking out of my leg or something, then yes. They're good for something like that. I just can't allow people who are supposed to be well educated, compassionate, & caring to dismiss me, mistreat me to death, and jeer while they are doing it. I love living because I have amazing family that are worth living for. I can make the best choices for myself on a moment by moment basis. I have great days that I feel strong-ish and vibrant-ish. I take those days and run with them. I have days where I just have to stay in bed. It's just life and these cycles are part of it. At the end of the day, no one gets off the planet alive.
Well only astronauts,,,,maybe,,,,,hope it all heals holistic doctor,who use,s all forms to heal are good,,worth giving a go
She went through hell. She is the perfect role model for being your own advocate and not taking no for an answer. She is one hell of a woman. I hope she continues to have good health and her cancer condition improves.
Im so glad youre ok. I didnt end up having cancer but was miadiagnosed 2x qith it and have severe medical PTSD from years of being treated horribly by drs that didnt believe how sick i was. Im stiĺl very sick and in severe pain, but at least im alive, no thanks to these ignorant doctors.
Do you take CBD oil?
I had anxiety before and many other symptoms. Doctors were of course dismissing me as a hypochodriac. Then, I ended to RE with an episode of bad facial swelling and full body rash. Doctors could not find the reason so wrote it off as an "allergic reaction". It was not. First time I was 100%sure that anxiety (mental health) had nothing to do with my illness. I have been since pretty much anxiety free. And my mental health otherwise have got super good. Actually, I have been more balanced and happy than in last 10 years.
I am still seriously and chronicly sick without diagnosis, but ironically, while dealing with multiple symptoms, I have been spending last 1,5 years in kind of euphoria that "at least it is my body and not my mind". Now that is fading and I need to actually get some answers.
Sorry about the grammar. I have had difficulties with it lately.
For 6 years i have symptoms and my first symptom is migraine then panic attacks and anxiety and i'm always dizzy and lightheaded and fatigue, i'm exhausted that even if i nap it did not help. I told my doctor my symptoms, and tells me i have anxiety and depression. But to me, theres something else going on. This was in Georgia when my husband was in the military. After 6 years we finally move to California and see other doctors. First and second doctor dismiss me and finally the third doctor, i told that this been going onnfor 6 years...i'm tired of doctors telling it's just anxiety. I push my doctor to do some test and came back normal and i told ny doctor to test me for autoimmune disease and finally i got my answer i found out i have auto immune disease called sjogren syndrome and i was really worried that maybe i have cancer or something and i'm dying. I'm just glad that it's auto immune not cancer. Now i know whats going on with my body and doing the right treatment for it.
You are a ROCK STAR! In America here and I tell everyone I know they need to advocate for their health care, because doctors get tired and complacent too. Kick them to the curb, until you get the doctor you need.
It always amazes me how much confusion there is in Medical care and treatment
Thanks for sharing
Would like to add that in my Country,Jordan has an excellent reputation for cancer patients and the latest treatments available
Also free medical care is offered to those unable to pay 😊
That's what scares me they don't tell you everything you have too find out everything for yourself even with cancer.