Un pc thoughts

MicheleR

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. 

Sister

One of the things that you come to realise through this is the difficulty people have in dealing with cancer.  How they express it comes across in many ways.  From ignoring you, to tiptoeing around you, to ignoring the cancer altogether (well, you're over it now, aren't you?) and many variations on the theme.  There are very few people it seems, who can just acknowledge that what you went through is huge and that it doesn't ever really stop, and that you're still under there, changed but still you.  

MicheleR

Hi @Sister, I read your story/profile. Its similar to my own. Hope you are getting there. I saw your AI post. Maybe it is the role of women (in this context) which makes it all so hard to navigate. We are supposed to look nice and care for others but what happens when we need care? The people closest become resentful or fearful? I don't know how to deal with it whilst I'm just trying to survive. 

Afraser

Many people are really afraid of cancer. They are afraid of being sick, they are afraid of death. They are uncomfortable around the subject. Unfortunately that makes them act uncomfortable about you. Single handedly, you probably can’t change that, it takes a massive change to how most live. Looking ‘well’ makes it easier for people to skip over the details. Looking ‘unwell’, drives it home and increases the discomfort factor. You deserve special consideration but in reality you may have to make allowances for others. Your sister is trying - just let her know you want to hear about her life, just as you normally do. But most of all, you are not defined by the shortcomings of others. Cancer’s a funny sort of lens, it can distort life but it can also make some things clearer. Keep your own well being and your better future, not the limitations of others, upmost in your mind. Best wishes. 

iserbrown

What you describe is not unusual!  Most don't know how to handle the diagnosis and prefer to keep quiet!  My advice is to surround yourself with positive people!  The Un PC as you describe it is not limited to family - friends can be a bit of a shocker as well as!  Basically they are not ready to handle your diagnosis.  I lost a friend of 40 years - what I always knew and it didn't bother me was it was always about her and when I needed support it wasn't there!
Try not to let it upset you and concentrate on yourself and those close.  Hopefully in the fullness of time and with some advice from the Counsellor you will be able to accept the way they have been and in time they possibly will catch up and realize that this Cancer is not necessarily catchy and marvel at how well you are coping.

Best wishes with your appointment with a Counsellor.

ddon

I hear you. I can’t complain - I have much love and support but I do know there are only two people who are on my wavelength and it’s because they have both had cancer. People in general want us to look well, be positive and happy and that makes it easier for them. I resent that sometimes but I know it can’t be helped. If the tables were turned I might be just as lacking in understanding. As time goes on it gets easier to let it go. Sending a warm hug xx

MicheleR

I guess everyone is on their own journey. Maybe we are somewhat enlightened. I dont wish to cut people out who care but are not coping but ultimately you cant have a one-sided relationship. I suppose im pleased my relationships are where I thought. My parents, my son, mostly my hubby, my sister have been important. Some work mates have really stepped up. Maybe it is a bit easier without the more intimate relations. I dont want to make people uncomfortable but its a bit much to have to alter myself to avoid their discomfit. 

ddon

Very true that you shouldn’t have to alter yourself to save other people’s discomfort. I was gently told the other day by one of my dearest that I should get breast prosthesis ( I intend to stay completely flat) because it makes other people feel uncomfortable. ???? I don’t care if other people are uncomfortable in this instance. This chest is mine and if I am happy to be flat then that’s all that matters. I am otherwise a very feminine person but I don’t need breasts to feel womanly. 

MicheleR

Hi @ddon, yes that's not right. Im also not uncomfortable about others seeing my lack of a boob.  Today I went and got a bra/pump up prosthetic simply so I can comfortably wear my dangle necklaces (I had rhs mastectomy only). I am concerned about maintaining my relationship with spouse but this is my new normal and he might just have to adapt. I do understand that the whole bald, Port, boobless and weight gain might be confronting but im more than my physical appearance. 

Afraser

News to me that naturally flat chested women make others uncomfortable! Sometimes I think people just blurt out things, meaning to be supportive. All you can do is laugh! 

June1952

@MicheleR - "men !"  That is all I will say about the majority of them.  Friends ?  So many are afraid that they will catch it from you !
@ddon - you go flat chested if you feel OK, stuff what others think you should do.  As you say, you are far more than a set of boobs so that can still like you or go on their way.
My 'best' friend supported me during my saga - she came to the hospital and stayed 1/2 an hour - yep, that was her 'support'.  She has the head in the sand and everything is "too much information".  Yes, we are still friends and I do manage to laugh at her attitude.  I do feel sorry for her, though.
People are all different and as @Afraser says, people blurt out things without putting their brain into gear first.  I sometimes think it is a bit of fear factor for them and they just don't know how to just be your friend as they've always been.  Your soul has not changed, just your body (and perhaps mindset for the moment).
Be strong.  Be positive.  Be proud.   We are all alive to tell our story.

Zoffiel

Ha. All the bullshit about 'staying positive' makes -- in my deeply un-PC opinion -- bugger all difference to your outcomes except for the fact it makes other people more comfortable. Pollyfukinanna I am not.

Nobody knows what they don't know. Some of my friends had nearly as steep a learning curve as I did when I was first diagnosed. Bless the good ones; some made terrible gaffs and I behaved badly by savaging them for it. In the end, we all learned more about the stuff that goes on in other people's than we probably would have chosen to.

I think it comes down to the intention.

If I know someone is really struggling to find the right thing to say, I'd rather them screw it up than avoid me because they have no idea what all the new territory involves. But I will let them know I don't agree with them/it's not really like that/ I don't want to hear that again.

The recidivist arseholes are a totally different matter. Three strikes and you are most decidedly sacked. That would be difficult, inconvenient and potentially expensive if it was my partner so I'm glad that me getting over anything that individual has done to raise what is (not so jokingly) known as The Wrath of Marg has been balanced by them forgiving me for being a total jerk on occasions. 

Abbydog

Dear MicheleR,
I've been fortunate, as the people most important to me have been great.
For me, that's my husband and grown up children.
There are some people whom my expectations for support weren't high in the first place.
I have a Daughter-in-law and a sister that have barely communicated with me to see how I'm going.
I've seen both maybe 3 times each, since my BC diagnosis in February. (surgery, Chemo, and R/T.)
Hardly any texts or anything else either.
Best for me, not to dwell on them. You can't make people care.
I've also been 'lucky'/'unlucky' to have known at least 7 women through work who have had BC.
I do work with a large number of women.
Three of those ladies I do ask what I need to know, as they really don't seem to mind. I've joined the Club.
Only one friend has the same  Type,Stage & Grade, and Surgery & treatments as me.
I am following her now as she has almost finished reconstruction.
I feel like I was desensitised/educated by following each of these lovely women, even before my own BC diagnosis.

MicheleR

I know someone at work but we are only known to each other through breast cancer. She is great and we exchange emails. I work in a mainly male dominated workplace. They have been great.

Cath62

Everything everyone has said is true.

This is why communication here on this site is great. We all understand and have experienced what you have with someone.

I had terrible things said to me.  Some people have never contacted me again after me telling them about my cancer.

 The fact is everyone reacts and not always they way we think they will or the way we would like. That is not your fault or problem. Maybe you can talk to them about how you feel. If not focus on you and what you can do. You are amazing, we all are amazing and we should be proud of ourselves. Best wishes x

MicheleR

Hi @cath62, 

I dont know how to talk to anyone i know about this. I dont want to offend them and im truly grateful for any of the interactions i have with those people who are struggling. For me this is a long path and for them once the shock has worn off maybe im just someone who has not much to talk about but my treatments and its depressing. I want them to share their lives so im not just stuck in the cancer bubble. 

Today I feel like people can't keep up momentum. I drove myself to chemo. I made dinner at 9.00 am ready in case I couldn't do it tonight. I am responsible for me. I accept that others aren't having this experience in the same way. Im just going to get on with it and not expect much.