Should we be talking about cancer?

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positive3negative
positive3negative Member Posts: 323 ✭
in Health and wellbeing

This month I celebrated four years since the trip to BreastScreen that found triple negative cancer in my left breast. It's an important milestone for me. Unlike other forms of breast cancer, the risk of recurrence drops every year I stay cancer free, right up until year five when I'm actually at the same risk as everyone else. It's about the only positive to triple negative!

I don't put a lot of things on my Facebook page about cancer. I have a separate page at Positive3negative for that. I separated out the cancer related stuff fairly early on. I realised that some people didn't want to read about my treatment or my recovery. I think I also wanted to identify the cancer as being something apart from me, a thing that was happening to me and not who I am. 

Anniversaries are different. I'm aware that my initial diagnosis prompted a lot of friends to go and get their breasts checked. This is a good thing. Early detection saved my life and in spite of a raft of negative press about mammograms, I'm definitely a fan. It's true that there have been issues with early detection of DCIS (ductal carcinoma in situ). It's at the lowest level of breast cancer and some argue it should actually be classified as 'pre-cancerous'. It's clear that many of these cases will be healed by the body without any treatment.

Of course, some of them will also go on to develop tumours and a subset of those will metastasise and ultimately kill you. The problem with DCIS is that we don't know which versions are the self-healing ones and which are potentially fatal. There's research going on to identify the difference and until they can do that, there will be women having surgery for DCIS that didn't need it. Personally, I'd rather not need the surgery and have it than need it and not have it. The important thing for all women is to have as much information as possible. Some may choose not to have mammograms, or to have them less often.

In any case, for those that choose to have them, posting something that lets them know another year has gone by is the least I can do. I always get a few friends thanking me for the reminder. This year I also got a message that said:

If you keep that thought in your mind it repeats itself. Let it go and no return, by deed or thought. No one seem to learn the lessons.

Wait......what?

It was posted by someone that was once a very close friend. She rarely posts or comments on anything on Facebook. She turned up once at the very beginning of my treatment to tell me to 'be positive' and I haven't seen her since. Not when I needed people to drive me to chemotherapy, not when I could have used some help around the house and not when some company during radiation would have been welcome. She was nowhere to be seen when I had two (now ironically named) breast conserving surgeries and not even a card when I was in hospital for nine days following the surgical removal of both breasts. 

I could have been outraged. Fortunately, a friend that has been a true friend through all of this happened, quite coincidentally, to send me this TED talk around the same time:

Forgiveness in the age of anger

It's worth twenty minutes of your time. There's a lot of great advice here but the part I really loved was about the way social media seems to be full of outrage. "I can't believe she said that!" "How could he be so rude!" "What were they thinking!"

The speaker, Brant Hansen, makes the point that our outrage is usually misplaced, particularly when someone is behaving in a manner that is entirely consistent with their past behaviour. "You can't believe your mother behaved that way? How many years has she been behaving that way? Why can't you believe it?" 

Hansen is the author of a book called 'Unoffendable' where he suggests that learning not to be offended by anything can have a profound impact on our lives. I agree. When we can let go of being outraged, accept that human beings consistently behave in ways that are inconsistent with our own values and simply let that stuff go we are much better off. 

I asked my 'friend' to explain her comment about letting go of cancer. I added this:

How about 'congratulations on still being here four years after you were told you were probably going to die'. I have managed to defy predictions of my early death. I'm pretty sure I'm going to keep doing everything I have been doing, even if you disagree with it.

Reading that back, it's possible to interpret that comment as outraged but it seriously wasn't. Try reading it again in a calm voice and you'll get my intention. I wanted it to remind this person that the reason I'm celebrating four years since my diagnosis is because I've worked hard at staying alive, and part of that process for me has been recognising all of the things that impact my health and taking action. I know that ignoring cancer and pretending nothing happened is an option for some people. It's just not an option for me. Here's her response:

That's great. I just don't think talking about it all the time is healthy. Let's just leave it at that. Txting messes with people's minds. Xx

I'm still not offended. Here's my take. This person is clearly not comfortable with cancer. There might be some history there or she might just be one of those people that likes to avoid any reminder of her own mortality. She could either 'unfriend' me or hide my Facebook comments if she doesn't want to read the very occasional posts about cancer, or she could just scroll on by, but for some reason she feels compelled to comment.

I can only conclude that it is her world view that the best way to avoid cancer is to not mention it. This makes sense. It's entirely consistent with her behaviour. It would also explain why she has completely avoided me since my diagnosis. 

I don't routinely mention my medical history to people. In spite of the fact that I am surgically flat chested, most people don't even notice. I could just look this way naturally. From time to time when it's appropriate, it will be part of a conversation but usually because someone else has raised it. I get that everyone wants to move on. I do too. 

Continuing to write about cancer occasionally, to offer support to the recently diagnosed, to write books about it and to maintain a Facebook page with updates on the latest research might be seen as me trying to remain the centre of attention. It's true that I have never felt more loved than when I was in treatment. I also never, ever want to have to go through that again! I'm not 'hanging on to it'. I'm giving back.

I know that the people that had come before me were hugely supportive to me during treatment. Reading about those that had survived triple negative inspired my own survival. There was also lots of practical advice. I'm just paying that forward. It is great to hear from people that are now in the cancer tunnel that they can see the light I'm holding. I got to here and they can too.

To be honest, there's some self interest here too. I don't want to forget. There were some life changing lessons in the whole experience. I know that it's not just my cells that got replaced after chemotherapy. I feel like a completely different person. Perhaps mentioning cancer is a cypher for that; it's a way of saying 'You might think you know me but I've been through this transformational experience and I'm not that person any more.'

My husband and I shared a table at an event recently. He told the strangers sitting with us that we were celebrating a cancer anniversary. The woman next to him replied 'At some point that stops being a thing.' Her husband explained that she'd had breast cancer a decade before. I get it. I think it's likely that at some point I'll stop writing about cancer. I don't think it's likely that I'll stop thinking about it and I don't want to. It reminds me to take good care of myself. It also reminds me to share those reminders with people I love. A timely mammogram might just save a life. 

And the person that thinks I should just stop mentioning it? She's entitled to her own opinion. Hopefully she'll keep it to herself in future.

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Comments

  • positive3negative
    positive3negative Member Posts: 323 ✭
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    Me too! Memes do not raise funds for research and I doubt they do much for awareness. I suppose people are well intentioned so I don't comment either. <3
  • Michelle_R
    Michelle_R Member Posts: 901 ✭
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    I hear you, Meg.  The only place I ever discussed cancer was on this site where people 'got it' and didn't get uncomfortable.   Like your 'friend' there were 2 particular members of my family who were no support whatsoever - very hurtful at the time, but looking back they always behaved this way in the past - Brant Hansen was right. After 5 years there is still no contact.   I would like to be as forgiving as you but it still hurts as they are close family.
    BC will always be there in the background but it is no longer the first thing I think of when I wake up, and that took years to achieve.  I will never forget it either - 2012 was the longest and worst year of my life - but now I am stronger, slimmer, fitter and healthier than I was before.   That has to be a plus.
    I always enjoyed your Positive3negative page.  Please keep up your writing here as well when you think of an issue.  It is always a good read, and I am sure helps many people.
    I look forward to your 5th anniversary!
    Michelle xx

  • iserbrown
    iserbrown Member Posts: 5,552 ✭
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    It's a little like my day job. No one knows nor understands and the minute they need my services I am questioned as they think they are experts.
    It's us living it compartmentalizing it and letting off steam occasionally on here without judgment. 
    Just skim past the know it alls.


  • Afraser
    Afraser Member Posts: 4,374 ✭
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    Cancer isn't who I am. But it's a part of who I am. Lots of things in life shape you, willingly or no. Parents, lovers, school, jobs, children and yes, cancer (or any serious illness - ask someone with asthma or diabetes). What you talk about to others depends on circumstances. So does what you don't talk about. I think it is reasonable for anyone to indicate, at an appropriate time, that they aren't quite as interested in some aspect of your life as you are - your kids, your three months in Provence, whatever. But they don't have any right to stop you being interested in it! Ditto about relegating something to the past. Your life, your call.
  • [Deleted User]
    [Deleted User] Posts: 0 ✭
    edited July 2017
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    A counsellor once told me that cancer is like a book in your library. You need to find a place for it. You can take it out and read it, but can then put it away again. Your friend's reaction says more about her than you. I think anniversaries are important and different for individuals.

    The online world is a strange beast. I recently commented online to a friend that however she chose to acknowledge breast cancer, I appreciated it. A woman who didn't know me attacked me and said that if I'd had cancer, or known anyone with cancer I wouldn't have said that. It was a strange assumption that I should behave in a certain way as someone who has had  cancer. I no longer choose to engage with people who say things like that to me. It's just upsetting, but I am only responsible for my own beliefs and behaviour. 
  • adean
    adean Member Posts: 1,036 ✭
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    A friend recently said l find it weird that you have friends throu g h breast cancer. Wouldnt it be best they were not your friends anymore why would you want to be reminded of cancer! Figure that one
  • Brenda5
    Brenda5 Member Posts: 2,423 ✭
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    From time to time friends on my face book do get antzy about life in general. We all do and some like to be outspoken about it. I give them a little time to come good but if they are getting me down or swearing a lot, I do unfriend them. It is rare though and I have some really wonderful friends on face book who I have acquired throughout my life along with common interests including cancer. You can't please everyone all of the time and if I want to speak about my journey on face book they can like it or lump it. It helps to talk about things. In the old days heaps of women were dying from cancer and families would cover it up and go on living. Geez, get the message out, its not taboo.
  • Jenv
    Jenv Member Posts: 64 ✭
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    My mother wouldn't talk about it for over two years, because, to not talk about it meant it wasn't there...yes its confronting and frighening, but its healthy to talk about it and raise awareness.
  • Cosette
    Cosette Member Posts: 637 ✭
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    I love your post @positive3negative. It raises a few different issues for me.

    I was a community member long before I became a community manager. I love the social web. I talk to my family and a few friends on the phone every week, but, as an expat, social media (particularly Facebook) is an important way in which I stay connected to family and friends abroad. I agree that some people seem to constantly express outrage; social media is an excellent vehicle for amplifying outrage. Plus, our brains have a negativity bias. We tend to remember negative things more than good things and they can have a greater impact on us. But it also concerns me when we blame people for being offended. Some things should offend us. I would love it if people stopped policing the reactions of people facing hardships.Yes, indulging in negative thoughts and self-talk isn't healthy, but talking is and the support we get contributes to better health outcomes. Nobody has a right to tell you you're sharing too much of yourself or that you need to get over it.
  • positive3negative
    positive3negative Member Posts: 323 ✭
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    Thanks so much, Cosette. What great observations. 

  • [Deleted User]
    [Deleted User] Posts: 0 ✭
    edited July 2017
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    It's a really interesting area. I have become increasingly aware of people oversharing information online, especially on Facebook. I have been guilty of that here at times. I recently had a post on my Facebook wall by a friend of a friend about how angry she is at life because of her medical condition and just post after post of info about her leukaemia. I can see why she would want to do this. What she hadn't considered was who her audience was. Also, how this will impact on her future when she attempts to move beyond this phase of initial diagnosis. I guess it's how you approach the posts. 

     I also see parents of children with cancer posting images of their children almost daily, when they should be protecting them. Sometimes this is for support, sometimes fundraising. I see it as problematic. I teach my students protective behaviours and I believe that this concept of protecting yourself in the online environment is vital, especially when you're feeling low. 

    I have experienced discrimination at work as a direct result of cancer. If I had posted images on Facebook with setting privacy limits, this would have added fuel to the fire. After active cancer treatment I wanted to move beyond being seen by friends and family more than just as a person with cancer. As I said on another forum, limiting my posts on FB helped me to do this. 
  • primek
    primek Member Posts: 5,392 ✭
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    One of the things I considered was I stopped liking any articles I read on the various bc fb sites so my friends didn't get those articles as well. I still read them. Mostly I don't comment. The only ones I share are the odd fundraising one. My private facebook journey page was by invite and started from the beginning. I guess really we just need to do what is the right thing for us as individuals. 

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