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
- Yes @arpie, it’s a small hospital. There may be one other onc, but I’m not sure. This person was highly recommended. Sigh. Yes I do need to tread carefully.
- Thanks, @Zoffiel. I get there’s no ‘lite’ treatment for BC, but I do know other first world countries have different ways of doing things to us.What you said about the onc ‘actually consulting’ with their patient totally resonated with me. Their job, surely?The question of cancer research focusing on determining the minimal safe treatment for prostate cancer to safeguard male potency ... well, I’m not surprised, I guess. Xxx
- @Kiki_Dances60 treatments, particularly primary treatment, is pretty much dictated by the Clinical Oncology Society of Australia which operates in consultation with other similar groups across the world. Your oncologist doesn't come up his or her own regime--they adhere to world best practice. Mostly. So, in theory, your particular disease will be mapped and you will get the recommended treatment, as will everyone else with a similar cancer. If they can afford it, tolerate it access it etc.
Things get tricky when you throw things like adverse reactions, existing conditions and access to clinical trials into the mix. That's where an onc with some lateral thinking skills and the ability to competently assess their patients (which--shock, horror --can invoke actually consulting with them) comes into play.
There is no 'lite' cancer treatment that offers the same success rate as the horrible ones. It isn't a thing. There is a strong probability that many patients are over treated, but there is no way of figuring out who those folk might be at the moment. There is a shitload of research into that going on spearheaded, interestingly, by prostate cancer. Over treatment there can mean unnecessary impotence, and we really can't have that.
We all want to wiggle out of this and find an alternative. There really isn't one. Sadly. Mxx - Good idea to record it all @Kiki_Dances60. Is it a bigger hospital? Only the one Onc?! Take care ... whatever it takes!! Xx
- @arpie Yes! I was stunned. I agree with @Zoffiel: he’s not strong on empathy - and likely autistic. He needs an empath sidekick, but he doesn’t have one.
I wonder whether his choosing this particular regime for me is due to instinct/gut feeling? Or it could just be: it’s ‘the protocol” and it’s pretty bloody nasty and kills everything - this woman is healthy (apart from one tumour), so she should survive the treatment.I also wonder whether more might have been done to advance to less nasty treatments, if the majority of breast cancer sufferers were men?
I’m sticking with this guy for the time being as I like the hospital. As of next week I’m recording every appointment from start to finish, so he might consider what he says to me. - I’m in Melbourne.
- Yep @arpie,
I would change Oncs, if I could get solid recommendations from others on the NSW Central Coast. - ....“oh, I forgot to tell you, you have another 6 weeks’ treatment!”.....
Bloody HELL, @Kiki_Dances60 - if my Onc said that to me, I'd bloody swear & probably THUMP HIM! Definitely power tripping. I wonder if he tells his male patients with prostate, that? I bet not!
I am onto my 2nd Onc as my first Male Onc was totally disinterested in me & my condition - so I swapped to a lovely female Onc.
Re someone collating all that info - as @Dory65 says - it SHOULD be done!! As it is, they are obviously not even collating side effects & Oncs keep perpetuating the lie that it doesn't happen much!
BTW - whereabouts are you? Town/state? We may have members nearby ;)
All the best with your ongoing treatments and remember you CAN change Oncs if you want to!! xx - @Kiki_Dances60 I've churned through a few oncologists in the last 14 years. The dismissed have generally--according to my entirely unqualified assessment-- been somewhere on the autism spectrum.
Now, before anyone drills me about those on the spectrum, I fully appreciate the multiple and sometimes extraordinary gifts they can have but in my experience being user friendly and empathetic is not necessarily a strong point. And that is where I struggle with those individuals when it comes to them being my health care providers. I would really prefer someone who relates and is relatable. It's difficult, but ultimately we are the consumers and we need to be able to communicate.
My current surgeon is a difficult sod, but most of my interactions with him have involved me being unconscious. I think some of the sacked oncs might have been better suited doing complicated things to mice in a lab rather than dealing with real, live, kicking and squealing patients. - Sounds like a great idea for someone's Masters or PHD @Kiki_Dances60.
