Un pc thoughts
Options
Comments
-
Yep @Dory65.
I've been lucky enough to have had a back door view of cancer research for the last ten years through my gig as a grant assessor for Cancer Australia. Some of the stuff I see is really encouraging. Some is so frustrating I want to spit.
The treatments we get in this country are world class, even if some of those administering them are notably not.
Despite all the guff about one cancer specialist being better than another, they are all informed by their relevant industry bodies. A bit like lawyers, the law is the law and none of us want mavericks who want to use us as a test case, at our personal expense. A good lawyer reads everything related to your case and looks for legal options. All but one of my numerous oncologists have been distinctly linear and only follow the latest guidelines. Sensible,but no sensibility.
Prescribed treatment is determined by current best practise for your disease, your circumstances are not generally a consideration unless you have comorbidities that mean prescribing would be negligence. We are, to a point, stuck with this.
Treat 100 to save 1. There is a strong probability that many are over treated, but it is incredibly difficult to sort that out. There is work being done on genomic stuff to help clarify who need poisoning and neutering and who doesn't but that will, and should, take years to put into regular practice.
Until then, we have to be good little girls and boys, all getting slapped for one child's transgression.
It sucks, it really fucking does, but for now, it's the best we have.6 -
I tend to agree with Zoffiel,
I have, like so many others had probably the full kit and caboodle of treatment as it is today.
It does seem like a fair bit of brutal surgery, poisoning and radiation.
But it is the some of the best treatments on offer for our times.
Should I live long enough to review this treatment, I'm sure it will have seemed like over kill.
Until then, I just hope for the best outcome.3 -
I feel your frustration, @Dory65 - and Yes, it DOES fucking suck! Being turned into an aching whinging bitch, for the sake of 'protection' .... I reckon we've all questioned why, more than once.
In my case, with Invasive Lobular Cancer, it is one of the more 'sinister' ones that can come back to really bite you in the bum if you DON'T shoot it down with all the artillery you can muster ... so I'll stick with it for as many years as I can put up with it .....
@MicheleR - that was great that the Cancer Council Nurse made contact with you & was able to suggest some meds that may help. Have you taken up the discussion with your Onc yet?
There has been at least one trial for men on prostate cancer drugs that give similar side effects to our AI meds that appears to be reducing their hot flushes, muscle aches & tiredness .... how do we find out if there are trials being run for WOMEN??
Take care & cyber hugs coming your way xx3 -
Hi @arpie, im not as far along as you with my ilc treatment. Im told they are trying to cure me but I still feel that whatever circumstances allowed it to rear its ugly head could happen again unless I change. I figure im buying time regardless and rather than fear what the future holds i can try and do other things to support health. Cant wait for the chemo to end, 8 more taxol. Im currently anaemic and fatigued as hell.
I was pleasantly surprised by call from nurse. She mentioned 2 menopause relief drugs for hot flushes and night sweats which I wrote badly somewhere if you are interested. She also gave me name of intimate cream should I need it!
I see onc wednesdays.0 -
Thanks, @Zoffiel and @Abbydog,
I was fine, then I was diagnosed, then suddenly everything changed, and things 'happened to me". Lack of control and so little information, no definitive answers - anathema to me.
Sometimes I nearly 'get it' (that oncology is just guesswork), but then I have existential hiccups - like now. I'm definitely having a 'wobble' in my ability to 'do as I'm told', especially when it doesn't entirely make sense, is counterintuitive and harms me in so many ways - plus my oncologist doesn't even try to explain anything and does not inspire confidence - but is following protocol/current best practise, as you said.
Then the thought of the sheer length of time to be taking ghastly tablets/injections....12 months on Zoladex, "and then we'll see"..."5 years on Letrozole, and then we'll see"...I just feel so rebellious!
I was never a compliant child. I may have appeared obedient, but I was actually doing exactly as I pleased when no one was looking...and never got caught 
So grateful to have you guys. Lxxx3 -
this is what penicillin has done to my face during treatment 8 weeks ago. Spots extend down my chest and are itchy. Im told it will not be permanent. Im not looking that flash. Few eyelashes left, scraggy eyebrows and light duck down head fluff. Ive put on 5 kg so far. I try to remember that its short term pain that suffering now will allow me to suffer less later. It is also no more than other amazing women have suffered.
1 -
@Dory65 id say you were normal. Drs are focussed only on action to solve the biggest problems (and thank goodness). But it lacks something. My surgeon was excellent but it was whirlwind. in rushing through he missed that I had a blood and needle phobia and wanted to wait to give me a port. by the time I started chemo it became very evident what a problem my phobia would be, Port was ordered and he revised his surgery strategy and was extremely helpful in getting me through with minimum stress to me.1
-
@Dear @MicheleR,
Sorry you are having such a crap time. I've tried a lot of skincare lately, and the brand that seems the best is CeraVe. https://www.cerave.com.au/ I do recommend it. It contains ceramides, which heal the skin barrier.
To be honest, I feel like a bit of a dickhead re my rant/winge above. I've never typed so many expletives before.
@arpie, thanks. x
2 -
Please don’t feel like that @Dory65. I have regular outbursts with more expletives than that. We’re allowed to. We’re going through major, unwanted and extremely uncomfortable changes to our whole being and lifestyle. I think we should be allowed to vent and release ♥️3
-
Dear @Michelle_R
I am sorry you are having such a shitty time. I will also check out the cream @Dory65 has recommended. Sending you hugs xxx0 -
@Dory65 don't apologize, and welcome to the sweary club -- your debut performance gets 5 stars from me
There was a grand clutch of us a few years ago. Some folk got a bit 'thing' about our collective blue streak, but the advice to them was scroll on if offended. I quietly think sanctioning us all every few days might have become so exhausting it was easier to just let nature take its course...
@MicheleR , your poor face, that looks so sore. It's one bloody indignity after another isn't it? Keep plodding chick, every day that passes during the BC shitfight is one you don't have to do again. MXX
3
