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The well meaning advice !!??

14 REPLIES 14
Andreaj
Member

Re: The well meaning advice !!??

thanks for the link blueash it was an interesting read

logically I know that these things can not be worthwhile or no one would have cancer today for any length of time, however I suppose its human nature to want to find some other weapon to fight it with and to feel worried that the treatment plan may not be right for you,,, putting your life in someone elses hands is scarey but they are the experts 

blueash
Community Champion

Re: The well meaning advice !!??

Those well meaning people drive me mad!

 

I always go to this site:

http://www.quackwatch.org/00AboutQuackwatch/altseek.html

 

There they can set you right if your friend tells you that eating dandylion leaves picked at a given stage of the moon ( or any such rubbish) are far better  for you than all the scientists, doctors, surgeons and universities combined knowledge put together!

 

Such people can harm us by denigrating sound scientific treatments.

 

 

Bottyboo
Member

Re: The well meaning advice !!??

Mooney that is so true. Chemo is your friend. Sometimes friends have to be cruel to be kind. I'm glad I had my friend Chemo. Xx
Mooney
Member

Re: The well meaning advice !!??

Some people still believe in ......things like coffee enemas which believe it or not are said to help cure cancer! As my lovely husband called it a crappuccino !
My husband also gave me a pearl of wisdom that I love and will have to keep reminding myself of as I battle my own mountain lion. Chemo is your friend not your enemy. Yes it makes you feel like **bleep**, but it is in there alongside you, fighting that mountain lion. It, with the radiotherapy, surgery and all the other stuff you have to go through, is killing that mountain lion. Also remember kale does not kill mountain lions, but well researched evidence based treatments do.
Hugs Mooneyxx
Andreaj
Member

Re: The well meaning advice !!??

Thanks so much to you all for your support, I have found what you all said comforting and have decided to go with a kind of belt and braces path.

 

I will take the advice of the specialist consultants who are trained in breast care and will follow their advice as closely as Im able.  I have to beleive that they are offering me my best chance of survival and as for people giving me this chemo kills stuff I will avoid them like the plague and if I feel strong enough at the time I will point out just how dreadful that kind of advice feels when you are facing the mountain lion in your fridge

 

Love that story it is so true I nodded all the way through reading it

 

I will also as far as possible continue to eat healthy avoiding sugar and processed foods - though to be fair I pretty much have been doing that for a number of years anyway

 

Thank goodness for this place and all of you X

 

 

RoadRunner
Member

Re: The well meaning advice !!??

Oh dear, these friends, are they medically or scientifically qualified?  If not then I don't see how you can take any notice of what they say.  I get so fed up with people telling cancer patients that if they only ate turmeric/apricot kernels/snake oil then they would get well without any conventional medicine.  I have no problem with people taking supplements (as long as they don't interfere with the conventional drugs etc) - I take them myself as a safety net - but so much time, energy and money goes into scientific research that I have no sympathy with those who rubbish it.  When I was diagnosed I googled a lot - I'm the sort of person who needs information - and I read a lot of the scientific research on the treatment regime I had.  I saw the improvement in outcomes for patients as a result of that research, and I feel very grateful for it.  If I had been diagnosed ten years earlier there's a good chance I wouldn't have survived five years.  As it is I reach my ten year anniversary next year. 

Treeze
Member

Re: The well meaning advice !!??

I've just had my two surgeries for my two cancers and last weekend after a really lovely day out with family an old school friend who I've kept in touch with over the years rang me as I'd let het daughter know to tell me two days before my op that I should contact a private herbalist to send me some over before my op and start reading a book about only eating an alkaline diet.she's been very I'll herself in the past and obviously means we'll but asked me if theyd traced what started it.she said any more chemo might kill me as her friend had died on it as her liver couldn't take it and to think very hard before I accept radiotherapy.she then prayed and cried for me..I respect peoples beliefs and normally find prayers quite comforting...asking that I have the courage to say no to treatment and that"the grim reaper" won't get me!! I was shocked and upset for ages after what had been a happy day.Everyone has an opinion on everything it seems.love to you x
Steph J
Member

Re: The well meaning advice !!??

Hi Andrea 

Poor you ...your head must be battered . The first piece of advice I was given was to steer away from negativity ... not so easy if its front of your nose . But I guess if its getting you down maybe as tough as it is to do you may have to thank people for their input but point out youre going through a difficult time and youve heard them but now youre ready to think and make your own decisions and hope they can respect your need to do this ... the actual advice I got was to say " if youve nothing positive to say then dont say anything"  ha ha dont know about you  Andrea but I couldnt see myself saying that as much as maybe Id like to . 

Try and trust your gut instincts .. but I think youll have to try and close down to the outside influences first ...good luck ...down let them get you down youve got enough on your plate Big hugs xxxx

Joandthetribe
Member

Re: The well meaning advice !!??

Hi Andreaj

 

I love the mountain lion cancer analogy - read it here if you havent already:

 

http://somehedgehog.tumblr.com/post/119415185391/cancer-the-mountain-lion-in-your-fridge

 

Maybe show your well-meaning but unhelpful friends this too as it very accurately describes the terror and confusion we feel when faced with a cancer diagnosis.

 

Trust in the experts.

 

Jo x

ann-m
Community Champion

Re: The well meaning advice !!??

hi andrea,
well, you don't need this on top of everything else & I echo everything said below.
It's amazing how some people think they are entitled to burden others with their ill informed views. It would be fab if cancer could be cured with just diet, vitamins & spices, but sadly, not!
Do take care,
ann x
Bottyboo
Member

Re: The well meaning advice !!??

Hi Andrea. Please please don't let these people get to you. If someone told them standing on your head whilst chewing a gorilla's toenail and singing Three Blind Mice was a cure for cancer they'd believe it. I personally know someone who followed Budwig under a very very special set of circumstances. If these extreme regimes were the cure for cancer everybody would be cured. Whilst it's always a personal choice standing on the outside is a different ball game to going through it. The best people to listen to are your consultants and BCNs.
A close friend jumped on the turmeric band wagon only for her oncologist to stop it immediately as it's counter productive in some cases. She then spent weeks worrying she'd compromised her treatment. The very best thing you can do is place your trust in professionals and don't stress about fads.
All the best xxx
Runningfree
Member

Re: The well meaning advice !!??

Hi Andrea

who understands the workings of some people's minds !

i was still in hospital after my mx and this woman who I worked with  FOUR years previously burst in my room.' I wonder what you've done wrong for that punishment to be given to you' !!!!! And a few weeks later as I was wading through my chemo she also told me that I should switch to herbal therapies, so similar to your experience. 

My mother in law keeps comparing my experience/treatment etc to her friend  who is 35 years older than me!!

i think sometimes people just feel like they need to say something and some rubbish just comes out! The problem is that sometimes that rubbish affects us. 

I echo the other posts, our journey is such an individual one, but all the research and evidence based practice has massively improved this journey.

I hope you are ok, stay clear of the negativity.

 

xxx

 

Kelly
Member

Re: The well meaning advice !!??

Hi Andrea

I sympathise with you - once people start to hear about your situation they all seem to have something to add! The thing that hurt me the most was being told "oh I know loads of people who've had breast cancer, you'll be ok" as if I'd caught a common cold and would be over it in a matter of days.

Whilst everyone's comments are well meaning and only come from a place of concern no one will ever really know how it will ever feel to walk in our shoes, unless they have experienced it themselves!

Of course, it is well documented that it is important to follow a healthy balanced diet and take regular exercise, and this is true for all of us whether we are diagnosed with cancer or not.

As to not undergoing chemo, this is something that must be discussed and taken very seriously with your onc. They will only ever prescribe this course of treatment if it is statistically proven to be of benefit to you in your treatment plan. Again it is easy for people to say don't do it - would they make that choice if they were faced with it??

There are many many women here who have undergone chemotherapy and will have reaped the benefit of doing so.

Everyone's journey is so personal. You must listen to what you want. I would say stay off the internet don't google too much, and if you must do so stick to the main sites i.e.breastcancercare, cancer research, Macmillan. There is so much information out there and not all of it will apply to you and your situation.

Honest, frank discussion with your surgeon and onc and Bcn is the best route for you.

Good luck and hugs
Xx
Jobey68
Member

Re: The well meaning advice !!??

Hi Andrea, Oh no your are not alone in this I promise you! Please don't take any notice and don't let it scare you in to thinking that conventional treatment isn't the way to go, of course no one wants to go through Chemo or radiotheraphy but it's what gives us our best chance of beating this disease, tried and tested! Equally nothing you eat or don't eat will make a jot of difference in my opinion, my husband has a well meaning cousin who loves to tell me that the government have the cure for cancer but keep it hidden so the pharmaceutical companies can make money! I've given up even trying to explain , it's well meant but so ignorant, which is typical of many who have never faced what we have, trust your doctors is my advise they are the experts after all Xx Jo 

Spoiler
 
Andreaj
Member

The well meaning advice !!??

I wasnt sure where to put this so if its wrong I apologise and please feel free to move it.

 

I was just wondering how others deal with all the well meaning but frightening advice.  Hardly anyone knows about my cancer but my partner told a couple of friends online who happen to be very interested in health issues and nutrition.

 

Im glad he is getting support but they sent me a link to watch something about not having chemo as it was negative etc I wont go into it in detail because it distressed me and might others .. thing is I am also getting a lot of advice from them about budwig diet and taking turmeric and other things and I have started taking them just in case they help but Im starting to feel as though I am scared to eat anything or not eat something ?

 

Does this happen to other people or have I just been unlucky? Since these are the very first people we have told its a bit alarming and Im worried that I am going to be scared out of my wits with these dire stories about chemo etc

 

As far as I know chemo and radium does save lives? 

help please Im getting more scared by the minute

A X