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,
A Cancer Council nurse rang me Friday just out of the blue. You could try ringing there and explaining symptoms. The nurse who spoke to me was at pains to tell me I didn't have to put up with menopause symptoms and recommended several drugs to talk to onc/gp about. They seem to be knowledgeable. - Hi @Dory65,
Hard to know given dont know your circumstances. I tend to favour the medical advice however I'm with you on having time spent to address your concerns. I get 15 min with my onc prior to chemo. He runs through his list of symptoms and then ticks go. I dont blame him as waiting room and chemo rooms full but how I crave a relationship with the person in charge of saving my life
I also question at times whether treatments work. The Web is littered with recurrence stories an im determined to make my body stronger to handle my future situation whatever it might be. There are services if you have health insurance extras which handle exercise medicine, counselling and physio, diet in one place for a more holistic approach. I think they also advocate for you. I cried my eyes out first session as I'd had oral thrush for 5 week and was miserable. Dr there mentioned a drug and hey presto my onc suggested in my next appt. - Hi Team,
I'm feeling very un PC and ungrateful just now. Cynical and fobbed off too. IF I am to continue taking these FUCKING DRUGS which have aged me TEN YEARS in 12 months and will continue to degrade my body, mind and quality of life - I want to know WHY???? The next time I see my oncologist, I'm going in with a script, and I'd like you guys to help me write it. Not one of my doctors has addressed the crux of the matter, which is - if I do not put up with these shit treatments, how much worse off would I be - in terms of recurrence? How long can I (not the general population - FUCK their stats - FUCK "we treat 100 to save 1") expect to survive, with or without endocrine therapy? Can my doctors please take the time to treat ME and analyse MY BC, instead of napalming us all as a JOB LOT?
IF they say "well, we just don't know..." THEN WHAT THE FUCK ARE THEY DOING!!! - Maybe its in the timing, telling someone they are lucky to have breast cancer as opposed to other cancers in the middle of chemo or following painful surgery or invasive testing isn't terribly smart.
Emotions are roller-coaster. I dont feel lucky to have or had cancer. I sometimes feel gratitude it isn't worse, that I found it, that there is treatment. I get the sentiment.
Same with comments about menopause symptoms. Not fun. Not a joke. - My darling husband has taken to complaining about his hot flushes. I adore him but in that moment I feel very murdery... :#
- I remember my surgeon’s nurse telling me, just after learning that my mammogram was suss and having a biopsy, that if you have to have cancer, breast cancer is the best one to have! Prognosis can be very good. Apart from anything else, breast cancer has benefited from a high level of funding for research. Early stage bowel cancer has a high level of actual cure, however. A reminder that for any cancer, early detection is the key. Don’t prevaricate, don’t hope the lump/funny texture/oddity will just go away. Check regularly.
- I won't be popular, but as a woman currently being treated for Breast Cancer. I agree with the comment of the person who said ' lucky to have breast cancer....compared to other cancers. I suppose coming from myself is quite different than someone else saying it. But it is a thought that I have had.
We don't get to choose our cancers. But Ovarian, Pancreatic and Brain cancers generally have very bad prognosis from diagnosis. And for now there has been a good amount of research done on Breast Cancer, more to be done as well. Because it is so common, many treatments are well mapped. Frequently and of course not always, treatment is successful. - i hear you. I was told the other night I was lucky I had breast cancer...compared to other cancers...I was a bit speechless...we have things to deal with that not many understand, so it’s fine to feel how you feel, there’s no normal except your normal. I wish you all the best
- Good on you @MicheleR!I’ve started noticing a pattern on this forum. One thing most of us have in common is that we overworked and always put ourselves last. Well, it’s time to change that and bring the focus back to ourselves. Give ourselves the attention and TLC we deserve, and not feel guilty about it 👌🏻Xxx
- For me this is now about priorities. I feel I did not give priority to my health. I was busy caring for others and doing my job and what I needed came last. Quite often I was too tired to do things I enjoyed.
Now I have to make my health a priority. Others need to step up and help with the household organisation so I can have priority on things important to me and be healthy and strong. Im sure my husband would say he never said I couldn't do things but on the other hand noone did anything to lighten my load. He would like me to give him more time. I chose to work excessively also out of fear that I'd be judged and also i found it fulfilling, how could housework and meeting others needs at home continuously at home do that? I suppose there was a hole .
I am processing it all now. It is not im sure unusual. I remember this is my experience and others will learn how this new me will be when I work out what it is.
