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
- Dear @Dory65
I feel your frustration viz uncommunicative oncologists! I too feel like I’m supposed to shut up and accept whatever he thinks is appropriate for me. My oncologist is so reluctant to answer my questions, he doesn’t ! I wonder how he expects me to make an informed decision about my treatment without any fxxxing information?
He actually laughed while telling me he normally ‘jokes’ with patients when he sees them just before their final treatment : “oh, I forgot to tell you, you have another 6 weeks’ treatment!” Horrified (I’m 2/3 of the way through), I told him “that’s not even the tiniest bit funny.”
Obviously no empathy. Is it a power trip?
I’m wondering, why isn’t some of the cancer funding paying an honors student to look back over the results of every patient in the past 20 years who’s had 6 month AC-Taxol protocol to differentiate between high ki67 cancers, to see their 5-10 year disease free survival rates? To see if all the trauma is truly worthwhile. - Sister said:Yep - vent if you want to - safe space here.
AIs? They suck. The cancer might be completely gone so you take them without need. You may take them and the cancer comes back anyway. You may feel so bloody miserable on them that you decide quality of life is better without, or not worth it at all. You may decide not to take them, be living a great life, and the cancer comes back to bite you. Where's the win? Damned if you do, etc...
Aren't I a little ray of sunshine? - Hi @Kiki_Dances60,
I sort of went the otherway and gave lots of info. I still post some stuff. I think people feel bad for you and dont know what to do with it when really what you need is people to listen. They also feel guilty sharing their stuff because there lives still go on and they dont want to winge. Just yesterday a friend of mine posted a there is always someone worse off post and she chose a man who had half his body amputated. She had said above it, we know you are suffering the worst if all of us. My response was its not a competition. Its all realative and acknowledging that being a parent is hard. Ive had to say sometimes listening not problem solving or offering postive words is all i need.
My brother rang me out of the blue yesterday for a chat. He has been very absent i realised he has some stresses i understood and we talked through them. Its a relief to help others with their issues. - Hi @MicheleR,
it is really tough hoping friends and family will “stay the journey” with you. I sent out an informative text a couple of months in, before I started on (neoadjuvant) AC-Taxol, requesting people get in touch, “but please, no questions, advice or stories” (I was quite overwhelmed with all the new info). A few people texted encouraging words back, a few rang me. Some didn’t.
I was/am half-way between miffed and quite relieved, because I find talking about it exhausting! Recently my sister told me it was my fault ‘people’ hadn’t got in touch with me because I didn’t give them enough info and ‘they’ thought the worst. I reject that! I told her c’mon! Who? “Well, I did” she said. She tends to think the worst, always. I have decided that it’s not my fault how others cope with my diagnosis.It is tough staring at ones mortality. It is also tough staring at your friend’s mortality. Steadfast friends don’t waver. I have a few of those.Someone wise said to me early on, “people often feel really helpless, so they may cope better if you can give them something to do for you”. That has been good advice. It has helped some people feel connected and less scared, I think.
The past 8 months in Victoria Covid has permitted social and physical isolation and numbing in everyone. I’m also taking that into consideration. Everyone’s managing as best they can, is what I say to myself... Including all of us women dealing with BC! - Woo-bloody-hoooo! Great news @Cathyw
A great start to the weekend!! Rest easy now xx - @Cathyw YEAH!!! Woohoo!!! 🥳🎉🥂😁
- yes biopsy is benign thanks everyone, relief!
- Thanks everyone, waiting for the results, I’m sure it’ll be fine
- All the best for your biopsy, @Cathyw. Fingers and toes crossed for good results xx
- We are listening @cathyw
