imagine me sitting at the desk, but it's not mine, it's his desk and he's on the other side looking at me with a question mark in his eyes, i don't know why he's looking at me like that, i thought he looked into file before i came in and knew why i was there, but he is a very clever and quick thinking man you know, he notices my bx results bookmarked, looks at them, it's F0, to him it's case closed, i can go home and come back in 5 years for another bx, no word of monitoring LFTs or AFP, simply go and be happy,
'but i want tx' i say,
a wrinkle on his forehead forms,
'are you aware of side effects? like flu, depression...' he starts listing,
'joint pains, nausea, brain fog, rash...' i've joined in rattling away but he cuts me off,
'so you are aware' and dives back into file to look for a different strategy,
he asks me if i'm working, i am not and i would like to use this time to tx before i go looking for work, he says tx is not an excuse, people work and study while on tx, students pass their exams,
well i know some people are lucky enough to be able to work but i am truly impressed by the students who pass their exams, especially that he starts painting a very bleak picture of how tx really is, side effects very bad, actually his last case got such terrible sides he felt worse after than before he started and on top of that he relapsed, oh yes i know that can happen, but that's the risk of it, he couldn't believe why i would want to put myself through it all with undamaged liver so he continued to discourage me, i knew that's what he was trying to do but i didn't understand why...
when he realized that his rationale tactic wasn't winning he changed the approach and started throwing numbers at me, shockingly wrong and low numbers for svr, i couldn't believe a man of his caliber with up to date team of tx nurses can be so wrong on numbers, the bells in my head had been ringing and i couldn't think straight any longer, i didn't call him on those numbers too shocked at what i was hearing and he thought i was buying it because i didn't say anything back, weakly i tried to contest those revelations that my gender, age, F0, BMI and general good health increase those numbers up, when i heard 'actually NO, with genotype 1b being the hardest to treat it doesn't make any difference', i couldn't believe what i was hearing, all the blocks and foundations of my knowledge started to crack and fall apart at this stage, a specialist is telling me that all i had known was NOT true?? i couldn't believe it!
after this bombarding he went on to ask the question again if i agree to leave his office with nothing,
but i still wanted tx even though my heart dropped to a knee level, i told him that i'd rather SOC now than wait for PIs because it is not fully known yet if virus resistance is reversible and with missing a dose or two on tx this is a big issue, plus after it's released for a while docs will need time to get the hang of it and i don't want to be a laboratory mouse for their mistakes, that's when he came up with the trial idea, but again numbers had been wrong and suddenly the side effects were no longer an issue, even though it's the very same thing with only one more drug added, confusion in my head persisted fed by his clever conundrums, he kept at this so fiercely, so skillfully that he wore me down, i could no longer give him decisive answer because he tore me inside between two options i never got myself ready to be faced with, i only knew that if i walked out of that office without decision i would've lost and i did, the last thing i heard from him was 'i can't refuse you tx, but you are smart and soc would be a stupid idea, go home and think about it, and when you know what you want to do ring my nurse'
and go home i did,
i cried an ocean of tears,
then i still couldn't agree with anything he said, i knew he was lying to me and didn't want me to tx but i couldn't figure why,
i was in a very very bad, dark, desperate and angry place,
but finally when emotions have settled, my logic returned and dissection of all the minute details took place a clear picture of what really had happened back in that office revealed itself,
the smoke evaporated and mirrors have crashed fully presenting what they were meant to hide,
but Dear Heppy i'll tell you about that in my next letter,
me
1 comment:
anna, I am sorry you were put through this unfair ordeal at such important time. how many many times, sadly, have I heard similar stories (whilst acknowledging the better scenarios) it is good to tell the story, it spread awareness for others. an all too familiar story that needs to stop. well done for being a patient who i s informed and aware. as although it was (understandably) very confusing and disempowering at the time....... you have focus and intelligence and commitment to get through these road blocks he has put up. clearly for his own agendas which I am sure you have figured pretty much what they are. bit I do also think of those patients who are too to tired and sick or not able to grasp things like this so easily, or just accept whatever the doc says. and it makes me sad. For you though anna - I wish you a clear road and good fight, all this seems to be part of the battle, but I hope and believe you will resolve this. and get treated. and clarify with this guy as to having the bloody integrity to properly present the correct facts to and with a patient. sorry, I rambled on... but it makes me mad. for you and for others. good luck. xx eva
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