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  • hopeless
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    Iowagirl.

    less hopelees but sleepless . I simply cant sleep normally for the past 6 months and I am officially the bread winner at home now.
    kid just finished university with post grad.
    physical problems of my own.
    great daughter .
    working part time and helping me with her mom.

    back on an exhaustive 7 day in a row 12 hours shift tomorrow.

    nevertheless came across ur post.
    sifted briefly through ur 1042 posts and I had no idea as to how sick you are.
    I AM profoundly sorry for what is happening to you.
    profoundly.
    Now this possible nightmare road to leukemia after all that I briefly read u went through and are still going through.
    U r a tough and very strong woman and your hubby is a very lucky man to have you as ur wife .
    as u know I came here to try to find directions, opinions answers that will be very hard to find.
    The only thing I can tell you is that I have no words to express my gratitude to u just by reading my posts while fighting for ur life.
    You are right… I have to fight a system together with my wife. side by side till death do us part.
    She is everything for me. everything. she always took care of me.
    she raised my daughter to be a brave young lady now.
    That’s what marriage is IMO… not just the young couples passion that we all have experienced but to live together , go through good times together and in life through bad times also.
    I will pray for you too so that may G’D give you the blessing to even see great-grandchildren if you don’t have any yet.
    Marion Is the front line warrior of many warriors that see and treat people on a daily basis.
    They(nurses) are the ones to care after the patients after brutal and sometimes simple but nevertheless dangerous surgeries.
    they see, feel talk motivate, encourage and on top I have seen them treated like trash by “doctors”…… long story…..
    Anesthesiologists keeps the patients alive while the surgeon cuts people and do their work .
    without the anesthesiologists the surgeons cant do nothing.
    Anesthesiologists are crucial in this whole ordeal.
    one wrong amount of meds or wrong procedure from their end we die on the table.
    I have this issue with surgeons believing that they are the saviors of the patients. absolutely not.
    Of course they are key to perform it right. But they are nothing without the other key members of this chess game of medicine.
    This is the main issue that my wife and I are fighting for.
    the surgeon atm believes that a surgery of this caliber has to be thought thoroughly. More thoroughly then 6 months of several exams in the arsenal and no diagnostic?
    the only one not performed was a PET scan.
    every other exam was done.
    That’s why specially her and I today draw the line and said … I can live with a negative diagnostic… I cannot live without one and she rather take it all out and live with the consequences.
    I am praying to the almighty that she does the whipple and it all comes negative… that’s a start.
    Maybe for people that will lurk here in the future don’t take a doctors word only.
    read .. research… understand what you will face and put the risk reward in balance.

    May G’D bless you ….. a lot
    I am a man of faith and I abbreviate the lords name because I do not say his name in vain just so u understand why I abbreviate his name.

    My warm and strong from my heart best wishes to u and all your family.

    you take care of urself.
    I will not be posting for awhile due to time limitations.

    “sleepless in Ontario”

    hopeless
    Member

    Marion.
    I read in the corners nurse that you are a nurse.
    You could not have said better in the statement above.

    Met with doctor and hospital staff manager for decision on this conundrum.
    second opinion is getting arranged via hospital with PM Oncologist/surgeon.

    if that does not work two other doctors (secretaries) at PM replied in 5 minutes time after my 10 phone calls to different doctors and administrative staff.
    they can try and expedite my wife’s transfer based on documentation that is already on their way to see if they accept the case.

    I am fighting for her…. day and night … 24/7.

    hugs back at ya

    a lil less hopeless

    in reply to: My Introduction #80126
    hopeless
    Member

    for the ones interested…..

    I can post about Canada also but will it help me atm?
    no

    this is England versus Germany……

    why does it work in Germany?

    http://www.dailymail.co.uk/health/article-2421781/Father-cancer-given-8-weeks-live-NHS-given-clear-surgery-Germany.html

    in reply to: My Introduction #80128
    hopeless
    Member

    Hi Debnor and Lainy.

    Debnor. I did not manage to transfer my wife yet to PM.

    I checked it out and she must be referred.

    Lainy. I am sorry that I did not have the time to read your entire story but yes, my wife is a brave woman. I am very lucky to be going to my 25th anniversary this month.
    unfortunately confronting this situation.

    The surgeon requested a small bowel flow through exam which I am almost positive will show that she has some sort of blockage due to adhesions from several surgeries.
    At the same time the same doctor that performed the test is in line with our thinking that she has a high chance of having cancer due to the bile duct and pancreas strictures.
    nevertheless he had to perform the test but he will mention his opinion in the report.

    She was in a lot of pain today and it was an exhaustive day for her.

    I can take her to PM hospital ER but like I said the triage may not lead us to the right direction.
    I am going to try and convince this surgeon to refer her and transfer her directly to PM.
    Not sure if this will happen.
    If it doesn’t I have to decide with my wife as to how we are going to make that happen.

    I know already its going to be horrible because she will be in too much pain.
    The pain she is experiencing is not related to her adhesions pain.
    She never ever had RUQ pain. We all know our bodies and when something is different it means that it is different.

    What frustrates me the most is that in Canada we are at the mercy of the system.
    I cannot pay to get her seen somewhere like PM faster .
    I call the system a conarchy. a mixture of communism with anarchy.
    its not free(we pay hefty) taxes as I mentioned before and we are prisoners of the system.
    we cannot just choose who to see in a fast manner or at least try to get an appointment faster.
    I myself had to wait 3 months for an MRI of my heel. 3 months.
    I could have gone to buffalo and get it the same day for 1k American.
    I am tired today. I am trying but the system is barring me from moving.

    thanks for hearing me

    good luck to all and my best wishes to all.

    hopeless

    in reply to: Stage 4 Cholangiocarcinoma in Canada #83557
    hopeless
    Member

    Hi Jennifer.
    I am very sorry to hear about your father.

    Marions is 100% right.
    Your problem will be our “fabulous” medical system to get your father to TGH or PM.
    I have no idea how you will make this happen.
    you need a referral with all your fathers exams and the wait time for a second opinion is approximately 2 weeks to get an appointment according to the Wallace Mccain center.
    you are located in another province therefore I have no idea if you are even entitled to come down to Ontario and be seen by a specialist here.
    We should thank our politicians for spending over 1 billion dollars to modernize our medical communication system while leaving people in hallways in hospitals.

    I wish I was wrong.
    many warm wishes for you and your family and good luck…

    hopeless

    in reply to: My Introduction #80138
    hopeless
    Member

    Hi Lainy.

    Thank you very much.

    Actually the strong one is my wife.
    I just sift through all that I can.
    I hope that maybe more members read my posts and provide some helpful insight.

    I have several names already on my list but the problem is to get to them .In the meantime the clock is ticking for too long.
    I am very scared because of that and then it may be too late.

    once again thank you so much for accepting me as a member and once again my apologies for letting things off my chest.

    all the best

    hopeless
    Member

    Hi Iowa girl.

    Thank you for the reply.

    Believe me that you are not country bashing.

    To add to my story, I have 2 brothers . Both are doctors.
    one practiced in Pittsburgh .
    He passed away from Thyroid cancer.
    He was trained here in Canada after finishing medical school back home and during his training as an Anesthesiologist back in the 80’s at Mount Sinai hospital in Toronto he left to the USA.
    You may ask why right? they could not hire him here because he needed to return back home and then , maybe they would hire him.
    My oldest brother which already resided in Georgia told him to simply cross the street, go the US embassy and apply for a resident visa since he had finished his residency as an anesthesiologist in Canada.
    one week later his visa was issued and he then went to work in a small community in your Country called Johnstown Ohio.
    So you would think. wait a minute. the Canadian Government spent thousands of dollars during 4 years of residency for him and he couldn’t practice in Canada due to a technicality.
    to add insult to the injury the American government says … well … thank you very much Canada … we will brain drain your country… welcome to the USA and please start practicing and take care of our citizens.
    My oldest brother still practices anesthesiology in the USA in Georgia .
    He sleeps in the hospital and he is an impressive example of dedication in regards to medicine. he just turned 74. still rolling.
    He would gladly obtain all the doctors that he knows to take care of my wife for free.
    the problem is for myself even with him to pay for the hospital bills and surgery which I simply cannot afford.
    otherwise I would have flown there and taken care of my wife.
    I personally do not think that there is nothing wrong with the American system.
    when I was very young I was insured under the American system but I insured myself when I had absolutely NO pre existing conditions.
    for several reasons along my life I cancelled my insurance.
    Going back to my deceased brother, he was here about 15 years ago when my wife needed a different surgery at mount Sinai.
    He went to the hospital to meet his old chief while he was a resident and his comment was as follows: ” I am shocked as to how much and how fast the Canadian medical system deteriorated”
    Yes.. during his residency the system was still working but we are talking 30 years ago.
    Nowadays you would be appalled how the triage is done at ER rooms in any hospital you go to.
    It is sad and shameful IMO.
    But that is me and my life and my wife suffering through this system.

    one would ask, why does the system work in France or in Germany/ forget about England and Australia… things are way worse there.

    I could enter into details as to why it works in France and Germany(socialized and tiered) but I don’t live there.
    My reality is here.
    tomorrow I am going to try and contact TGH and PM to see how can I help my wife.

    Thanks for replying.
    sorry for misspellings or confusing statements but I am trying to stay sane through this nightmare.
    all the best

    hopeless
    Member

    Hi everyone.

    sorry for the double post.

    good luck to all and I am also praying to all that are suffering from this dreadfully disease.

    in reply to: My Introduction #80131
    hopeless
    Member

    Hi Red.

    thank you for the warm wishes and the sense of urgency.

    Yes. It is a shame that the system is at this stage.
    The Hippocrates oath the doctors took when they graduated turned into a hypocritical oath.
    I am in the process of trying and transferring her to either princess Margareth or Toronto general but
    the only thing holding her up is a PICC line where pain meds and other meds are being administered (Ondansentron, Benadryl , gravol, etc)… She cant function without that.

    I am trying to expedite her transfer tmrw when the office opens at PM or TG… there is a triage nurse I can try to connect to and provide her all docs at hand…
    I am tremendously scared that once she gets out of the system to go back into it is another nightmare…this was tried and you have no idea how dreadful it was for 12 hours in a crammed ER she remained until being transferred back to the original oncology surgeon.

    this time I am keeping her in the system as much as I can.

    I can try to see if this surgeon transfers her directly to PM.

    my kind and humble thanks

    People are dying in hospitals here or left for dead in hallways while the Government and its propaganda machine creates an international illusion to other countries.
    this is not her first rodeo.
    She is also a case study for endometriosis stage 4 . in the beggining the surgeons said that she wanted “attention” until an appendectomy was performed and endometriosys was diagnosed through pathology… Its barbaric

    in reply to: My Introduction #80135
    hopeless
    Member

    Hello Lainy.
    thank you for the kind words and the support this great family gives to each other.
    I will try to copy and paste the entire post and place as a new post.
    If I cant do it please let me know how to do it.

    Yes. Princess Margaret and Toronto general have the most experienced doctors for this dreadful invisible and disguisable as a chameleon disease.

    I already gathered several names from both hospitals .
    the problem is the Canadian system .

    Good luck to all here fighting for their own and their relatives.

    in reply to: My Introduction #80134
    hopeless
    Member

    Hello everyone.

    As you can see by my nickname I am hopeless.

    hopeless with the Canadian health care system and hopeless with all the doctors that since May have misdiagnosed and mistreated my loved wife.
    Not to mention how the majority of nurses and triage personnel treated her .
    The so called “Universal and socialized medical system in Canada WHICH IS NOT FREE (we pay on average CAD 12500 dollars per 2 adults in a study through our overall taxation.
    I am going further to say because of the CAP (doctors malpractice insurance )which ironically is little known by the Canadian population as a not for profit organization protects them from malpractice with OUR tax dollars and some payment from their own pocket.
    The Nurses association is just as powerful to do and undo whatever the heck they want and keep their wallets fat with taxpayers money and also stay untouchable.
    Yes ladies and gentleman CAD 12500 dollars in taxes for a collapsing system.
    I am sure my fellow Canadians will bash me for the above statements. nonetheless it is the reality, not a fantasy and neither a fiction.

    Her story is ongoing and it all started with an acute abdominal pain and severe pruritis for which her and I thought was an allergic reaction.
    After an injection of epipen and a trip to our small town hospital inside an ambullance , her never ending nightmare and horror story starts.
    in a nutshell on day 2 after a battery of blood work was performed and ALL her liver panel functions showed numbers that were through the roof she was transferred to a larger hospital in Hamilton l. At that hospital the initial resident had an excellent plan that never took place, (that man one day will be an excellent doctor but he was shut out of the treatment)
    They would do an MRCP on the following morning and further blood-work would be performed along the way.
    Then I ask all the members here. did that MRCP ever happened until she was discharged?
    NOPE.
    After 13 days in the hospital vomiting pure bile and not eating with 3 antibiotics being administered to her and just an ultrasound that could see absolutely nothing they finally decided to perform an ERCP.
    ERCP done. sphyncterectomy done. result. bile duct dilation.
    Did the doctor request to do a follow up? NOPE.
    They went on to discharge her with elevated liver enzymes, pain, jaundice but offered her an Xray. How kind of them.
    we immediately called her previous surgeon that performed her cholecystectomy and on we went to see him in less then 5 days.
    first exam : blood work and an MRCP with Gadolinium.
    Since the exam was performed at night and my wife has severe allergy to IV iodine the Gadolinium was not administered because at this particular hospital they did not want to take the chance of an allergic reaction.

    result. a pancreas cyst on the head area.
    back to the surgeon and he asks to repeat it with gadolinium this time no matter what. Its a hospital she has an allergic reaction then have to take care of her he said.
    Its a hospital he said. we are here to treat people he said.
    in the meantime we requested the ERCP specialist to see her.
    how long would you people think it took for an appointment with this doctor after basically begging to see her? 30 days.
    In 3 days her previous gallbladder surgeon obtained another repeat of the MRCP.
    how is that possible if the system is the SAME FOR ALL?
    either way. the MRCP as we would know lit like a Christmas tree showing an anomaly in the distal area of the bile duct plus a better view of the pancreatic cyst.
    now going back to the ERCP doctor consultation. Actually it felt more like an INSULTATION , untill we showed her the MRCP result which WAS DENIED AT THE HAMILTON HOSPITAL SINCE IT WAS CONSIDERED A WASTE OF RESOURCES. Yes. welcome to the socialized and well managed Canadian health care system .
    THEN this doctor face jaw fell and SHE actually turned yellow. from treating my wife like trash at the appointment she goes and says. “Oh . i am so sorry” furthermore … she arranged in less then 24 hours a stent placement by another doctor” if I can call him that” and a series of blood exams plus an FNA for the cyst and a brushing pathological study.
    WOW one would say. that’s fast. not really.
    all this was done under intense stress and lack of care for a human being.
    It took another surgeon (not oncologist) to point to her that HEY are you really looking at what you need to look for? NO.
    over 3 months went by for ALL the above to happen through basically a battle with the system and abusive doctors nurses and the list goes on.

    at the end of the whole ordeal…. FNA NEGATIVE .
    Brushing : Atypical ductal cells with mitotic figures. suggesting follow up with clinical findings.

    after that has any of the doctors did anything else?
    no.

    symptoms remained. RUQ pain persists , elevated ALP, pruritis and more loss of weight.

    On we go to a larger center in Mississauga where she was submitted to a spyglass exam: inconclusive
    MRCP : the doctor is not worried about the cyst… yes that is what he keeps saying
    Distal area of bile duct: remains dilated.

    In his initial consultation and just based on the initial exams presented to him he wanted to perform a whipple procedure RIGHT AWAY, meaning on the following week….. well…. he changed his mind.

    Now he doesn’t want to do it at all.

    and bedridden she remains and now i am trying to transfer her to Toronto .

    ITS been 6 months since the horror story started and thousands of dollars spent in repetitive exams at no avail.

    there are more details but since I have been lurking and reading very interesting posts from people that are going through this EVASIVE AND CHALLENGING carcinoma to be detected, here is my wife that MAYBE is in the early stages of the disease and no surgery on the way to PREVENT this DREADFULL AND LETHAL disease for which ONLY 3 to 4 thousand cases are diagnosed in the USA which has a population of 300 million people?
    imagine us Canadians with 30 million people only.

    sorry for the ranting , misspelling etc.. but I needed to let this off my chest.
    I read a lot about bile duct and pancreatic cancer that I almost look like ELI which carried his suitcase with information. I think that Eli’s wife was properly taken care in Ottawa slow move but taken care off although she was diagnosed.

    my wife remains undiagnosed and that is why I believe that the doctors are being negligent.
    we know the severe risks of this surgical intervention but the rewards are higher if the pathology shows CC or shows nothing. She can live with that.

    thank you for listening.
    any, but any ideas or help are more then welcome.
    sincerely

    from a hopeless husband

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