hi all…
Last week i went to my parents for a week…after chemotherapy it was always tiring …met up with my brother who is a doctor…i was talking about my condition and feelings… he sad i’m quite lucky as i’m still a live whilst others with my diagnosis wouldn’t have survived this long (more then 5 yrs)… i got a bit emotional …i don’t know i can’t except people who don’t have this calling me lucky…
Hi izzati -
I do understand how you are feeling and think it was very tactless of your brother to be so direct and callous in his remarks. We may all have breast cancer here, but we are all different and react differently to our treatment. You sound as if you are doing fine and will continue to do so. I found I had to dismiss any negative comments from well meaning relatives and friends…it is my life, not theirs, and they cannot possibly understand how I feel.
Just to put matters into perspective, when I was diagnosed with Crohn’s in 1970 - the dark ages when the only treatment was steroids - my then gastro told me I would be lucky to live 5 yrs - I was 25 yrs old!! Well, I wasn’t having any of that and eventually found a drug, methotrexate, that was being used in the USA for Crohn’s, but not licensed in England for my disease. I badgered my gastro until he got so fed up with me, he prescribed it “off license”.
I feel that we have to be our own best advocate where our health is concerned. and I am very proactive with both of my serious diseases. I don’t think “luck” comes into the equation at all - we need the appropriate teatment for our illness not facile comments, especially from a doctor, who should know better. Truly, where there is life, there is always hope.
I try and live now by the following mantra:
Yesterday is history
Tomorrow is a mystery
Today is a gift.
Take care, and come here any time you feel “emotional” - I think it does us good just to get things off our chests with people in the same boat, who truly understand.
Liz.
Hi Izzati
We can’t really feel lucky in this situation can we?
its a little insensitive of your brother to say the least. I once read somewhere that doctors can be very callous when they are dealing with people who are really ill, but when they are the patients they are more likely than others to become extremely hysterical and demanding!! (have to laugh, then they know how it feels) I suspect he thought he was being helpful but the truth is he isn’t. I get very upset with my relatives telling me why this happened or how I should feel,I would never do that to them…so in my opinion you are right to be a bit upset with him,just try to forget it as I am sure he didn’t mean to upset you, but come on here to speak to people who know what it is like whenever you need to.
take care
cathy
Hi Izzati
I am an only child and at times like this when I hear how insensitive brothers can be I am glad. He is the lucky one, lucky you didnt belt him.
Joking aside I am sure he didnt mean anything by it he just didnt think, maybe because he is a Dr we all expect more empathy from him. I f I were related to him I would ask him to log on this forum. We are all different but lucky isnt a word I would use with regards to this s…t disease.
In the 70s I had to have an operation I was in a ward with 3 nurses all having tonsils removed. The morning of the op 2 had done a runner they were scared stiff! I asked the remaining nurse should I be worried her reply was “sometimes knowledge can be a bad thing”
Love Debsxxx
Hi Izzati
Relatives are really odd aren’t they in thinking they can tell us how we should feel. He probably meant well by it - in terms of appreciating when things are going quite well for us even if it is in this very frightening world of secondary bc - but I certainly would react very badly to being told I’m lucky! How can we be (as Cathy says) in this situation?
I’ve just spent the weekend away with my hubby’s family and had to endure my younger sister in law constantly telling me that I would be fine. She “knew other people who had bc and they were fine”!! I don’t like any form of fuss etc but in the end I more or less lost it - but she still wouldn’t accept it when I pointed out I was “terminal” (hate using that word) and that I would die of bc hopefully not sooner rather than later but there were absolutely no guarantees. I then got told I was being negative and she was sure they would sort something out! Think again she meant well by it in some ways - she obviously felt she was bucking me up. As it was she completely irritated and upset me and made me feel as if I was making a huge fuss and attention seeking.
My brother by the way I have had one email from in the last 6 months!
Families heh!
Kay xx
Oh Kay, poor you. (And you, Izzati). I would have been hopping mad! (but probably too polite to say anything - just cried in my room!).
I’m sorry she was so insensitive. It really hurts when you feel people just don’t understand. You almost imagine they don’t want to understand. We don’t have the luxury of such deludedness…
Big love,
Jacquie
thanks everyone…i kept this bottled up and didn’t even tell my husband because thinking i was selfish for feeling this way… when i told my husband he told me to just ignore it and its okay to feel angry…some people are ignorant or sometimes just plain insensitive about other peoples feelings…
once i saw a doctor asking advice about my chemo as my WC was low and had to extend my chemo from once every three weeks to every 5-6 weeks…i said politely that some people from the UK (referring to this forum) had a change in there regimen (mine was day 1 venorelbine, ifosfamide day 1 to day 3 and veno again day 8…but my neutrophil was 0.3 on day 8 causing extension up to 3 weeks and it went on like this for 3 cycles, thats why i was asking for advice)… i was asking if i can omit day 8 and just take the same regimen day 1 to three every 3 weeks…i said it nicely if it was possible…He looked at me and in a sterned (high note) voice he asked…how do you know …do you have a consultant there…working there… studying there…!!! i was near to tears… then i just answered still politely that i was just asking for advice…by the way he isn’t even a oncologist yet…still studying to be i assume…after learning i was a pharmacist and my brother was in his batch from the same Uni. he tuned down a bit… to make a long story short he went to see my oncologist, she said that my suggestion was alright only that the veno dosage would be increased for day 1. and my oncologist said that it my be better that i take it every three weeks then extending it to 5 weeks …
i didn’t know asking for suggestion was a crime…i think that some doctors here (malaysia) are still not open minded and can not accept that people now a days get information from everywhere includint the net…frustrating for me…I’m a pharmacist and i know about the drugs that I’m taking…still i can’t convince them that i know what I’m talking about…
Hi Izzati
No its not a crime, its a good idea to voice your concerns or questions with your doctors…you are also a pharmacist as well so you know better than most of us what is possible. Some doctors over here stll treat you like you are crazy if you have ideas and they roll their eyes if you mention the internet…I am also wondering if Malaysia is very male dominated in the medical profession and they think that women should be quieter. Here the professions are becoming more even, but older doctors are more likely to be men.
You keep asking whatever is on your mind and get your husband to help you if they wont listen…you sound like you know what you are doing, never would have thought of your suggestion, it pbviously comes from a medical professional!!
take care
cathy
I think it is a mistake to imagine doctors are kindly old souls interested in people and in healing. They are more likely to be irritated by a never ending stream of patients that they see for ten minutes max and probably think should pull themselves together and get on with it
I don’t like them either
in fact that is one reason I’ve had no follow up from them. Their time is more valuable than mine so I’m leaving it to them
My brother is not a doctor but he can also be a pain though.on the other hand he’s not all bad
Hi Izzati,
Please try not to feel to emotional, as the other ladies say people including family can be very insensitive at times, and i think your brother should have realised he’s not just talking to one of his patients his talking to his sister. sometimes brothers do get forget when they are are work and with family. i have 3 of them so used to always argue but now life it to short to argue and waste energy on negatives.
As a pharmasist you’ve and a cancer patient you’ve got every right to question your medication - don’t forget its your life and your fighting for it so don’t ever be afraid.
and finally keep strenght and hope in your religion and faith(Allah) and don’t forget you’ve got a lovely daughter and a supportive husband.
Hugs
Sukes
thanks everyone…
please don’t get me wrong i don’t hate doctors…maybe some are insensitive…but not all…and about my brother …his my brother of course i don’t hate him…i think that he just doesn’t know how to communicate with me especially when talking about my cancer…his been like this since i was diagnose with secondaries…before this he didn’t talk much about it…i was quite close to him but …have drift a part since i got sick…it maybe because i was busy with work and also my treatment…
thanks again…lots of hugs
izzati