Forum Discussion
Un pc thoughts
So im writing this just to get it out. I dont really expect a solution. Apologise in advance if the un pc nature of this is not nice. I am getting a counsellor soon.
Ive been aware all along that im somehow responsible for how others feel about my cancer but lately I've felt something doesn't quite work for me and I'm struggling to find any way to express it without crossing some taboo.
I get the impression im supposed to be selfless but the way people behave is not without consequences to me. In short .. here comes the un pc part, some people are emotionally retarded.
I have barely seen my brother since my diagnosis 3 months ago. Last year when he ruptured his Achilles and had 6 weeks off work I visited him 4 or 5 times despite being busy myself. I listened ( with my medical phobias) to his descriptions of what happened when he took the boot off. I know that he cares but somewhere outside of my understanding about his discomfort im a bit hurt that he can't move through it and make some effort. I saw him yesterday at my mums bday lunch and despite barely speaking to me at the end he said its good to see you. I thought really? At what point will it register that he could have helped me in some small way?
I had coffee with a more self aware person yesterday and she confessed that she was afraid I might look unhealthy. She said my eyes were bright and I looked good. I do not look good. I had made an effort and wore make-up a nice dress. I thought I looked alright. Photos after told me im deluded.
My hubby said as I was getting ready for coffee " so you will dress up for her but not me". On the weekend he asked if I could wear my scarf differently. I said I wasn't born with the knowledge of how to tie scarfs and I was struggling with my appearance. My hubby has always praised me for not wearing a lot of make-up. Do I have to wear make-up at home now to make him feel better? This is not something that requires an answer.
My sister was having a rough day. We chatted. At the end she said but its trivial in comparison to what you are dealing with I shouldn't complain. I said of course you should. Just because im unwell doesn't mean your life is less trivial. How many people are shutting me out of their life because I have cancer and their world is too trivial now? How many people are avoiding me because I look unwell?
These are difficult things. Sometimes I want things to be the same but sometimes I want some acknowledgement. I want people to understand a bit without all the social expectations. I dont want to have to protect people all the time and be understanding.
Ive been aware all along that im somehow responsible for how others feel about my cancer but lately I've felt something doesn't quite work for me and I'm struggling to find any way to express it without crossing some taboo.
I get the impression im supposed to be selfless but the way people behave is not without consequences to me. In short .. here comes the un pc part, some people are emotionally retarded.
I have barely seen my brother since my diagnosis 3 months ago. Last year when he ruptured his Achilles and had 6 weeks off work I visited him 4 or 5 times despite being busy myself. I listened ( with my medical phobias) to his descriptions of what happened when he took the boot off. I know that he cares but somewhere outside of my understanding about his discomfort im a bit hurt that he can't move through it and make some effort. I saw him yesterday at my mums bday lunch and despite barely speaking to me at the end he said its good to see you. I thought really? At what point will it register that he could have helped me in some small way?
I had coffee with a more self aware person yesterday and she confessed that she was afraid I might look unhealthy. She said my eyes were bright and I looked good. I do not look good. I had made an effort and wore make-up a nice dress. I thought I looked alright. Photos after told me im deluded.
My hubby said as I was getting ready for coffee " so you will dress up for her but not me". On the weekend he asked if I could wear my scarf differently. I said I wasn't born with the knowledge of how to tie scarfs and I was struggling with my appearance. My hubby has always praised me for not wearing a lot of make-up. Do I have to wear make-up at home now to make him feel better? This is not something that requires an answer.
My sister was having a rough day. We chatted. At the end she said but its trivial in comparison to what you are dealing with I shouldn't complain. I said of course you should. Just because im unwell doesn't mean your life is less trivial. How many people are shutting me out of their life because I have cancer and their world is too trivial now? How many people are avoiding me because I look unwell?
These are difficult things. Sometimes I want things to be the same but sometimes I want some acknowledgement. I want people to understand a bit without all the social expectations. I dont want to have to protect people all the time and be understanding.
108 Replies
- @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.
- 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.
- 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. Lxxx - 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. - 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 xx - 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. - 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. - Thanks @Afraser
- @Dory65
It’s unfair, it’s frightening, it’s disempowering - anything you can throw at it is fair enough. But the hardest of all is that your oncologist can’t tell you anything as hard fact. He/she can give you stats (been there), likely outcomes (there too), possible variations, but predict how a complex, and sometime unpredictable disease will manifest itself over time in one individual? No, we are not there yet. That’s not your oncologist’s failing either. Anyone who gives you an absolute answer is deluding you or themselves. And so some of the decision making rests with us. It does in so many things in life - it’s just that we usually feel better prepared for them. Let it out here, then consider telling your oncologist what your absolute priorities (make a priority list!) for how you live are. That might help both of you decide a path that you can accept. Best wishes. - Thanks @MicheleR,
Thanks everyone for letting me vent.
