The Scar Project, Canada

http://l.facebook.com/l/9AQEGsrlTAQE-uFRF_IU-yNQPow-khCqSq1mB_R47Un_lPA/blog.thebreastcancersite.com/scar-project-canada-portraits/?utm_source=social-paid&utm_medium=bcsfan-kw-cpc&utm_campaign=scar-project-canada-portraits&utm_term=20150213

A lovely, well meaning friend sent this to me today.  The Scar Project is something that seems to be travelling everywhere.

But you know, I think I don't really get it.  I understand that the women who took part feel empowered and I guess that if this is the only outcome of this project, that is a good one.  I also understand that it might make people more sympathetic to breast cancer patients and (the word that I hate) 'survivors'.  To see what they're living with underneath their clothes might be shocking.  I certainly had never seen such photos before I had the disease.  It might have helped me to imagine how I would be and maybe show me that there are other people who have been through it and are living with the after effects.  Or they might have made me very frightened.

The thing I appreciated most in the commentary in the film was a woman saying that once the disease is over people think that life is back to normal and that, yes, there were normal times when she felt normal, but mostly there were times when she felt she had been through something very powerful and that living with the scars was frequently difficult and not normal at all.  That I do get, I understand.

My friends look at me and tell me how healthy I look, how lovely my eyes are, my skin, my smile.  I am glad for those compliments, truly, and in fact there is a shot on this video where the camera focuses on an attractive woman's face and then slowly pans down to her ravaged chest.  So I think I am starting to believe my friends, that people look at your face first and yes I know nobody sees my breasts and the scars and the ugliness (and mine are not as ravaged as some of those on the photos so there's something to be grateful for).  But, I know what's underneath and I am the one to look at it in the mirror and hide it from my husband.  I'm the one who won't be showing it on the beach this summer.

In fact, I also chanced up this news item whilst I was looking for an image: Facebook allows post-mastectomy photos.  This is thanks to a petition started because the Scar Project photographer wasn't allowed to post the Scar Project photos and share them with the world on FB.  "sharing photos can help raise awareness about breast cancer and support the men and women facing a diagnosis, undergoing treatment, or living with the scars of cancer," it said.  Good on you.

http://www.news.com.au/technology/facebook-allows-postmastectomy-photos-following-petition/story-e6frfro0-1226662990480

"By removing the photos, Facebook is sending us a message that our struggle with this disease should be kept in the dark."  Absolutely.

The last word has to come from my son, however.  He saw what I was looking at on the computer writing this post and asked what it was.  I explained that some women have to lose their breasts when they have cancer.  At first he said 'is that what you're going to have to do?'  I reassured him, no. (let's hope eh?)  And he said, with the innocence and honesty that only a child can have 'in your head Mummy you should feel glad because yours aren't as bad as some of those ladies.'  So, in my head, glad it is then son........

Another delay

The surgeon called me when I was grocery shopping today regarding the lipomodelling.  He said the Commission okayed the decision but only after 2 years after treatment, when he'd always said it was after one year so he was adding a year.  I was stunned and my heart fell to the floor in disappointment.  I asked if I could call him back later.  During that call I understood better.

His 'expert' at the conference in Lyon told him 2 years and the Commission told him 2 years after treatment.  I didn't understand why he'd led me on by saying one year all this time.  I'd been waiting waiting waiting.

He said that lipomodelling was so relatively new (for post BC patients) that at first he'd warned me that the commission might not even ok it (this I remember).  And because it's so 'new', the guidelines are evolving all the time.  In fact, one of my BC FB lady friends told me she was told one year and then it changed to 2 years.

Because the rate of recividism is so much higher in the first two years following treatment, and because lipomodelling can impede mammograms and tests to detect cancer, the guidelines are now 2 years so that the highest risk period is over.

He said, rightly, that he could not go against the Commission and I understood that.

But what a fucking blow.  I am SO angry and SO disappointed.  I have to live in this shitty body for another year looking (or not looking) at those ugly breast mounds, hiding on the beach and at the pool (in fact I just don't go now and that's a shame as I really enjoyed those times with the children).  And I was looking forward to not being embarrassed about getting undressed in front of my husband and turning my back.

I don't think our marital relationship can survive another year like this, with me feeling as I do.

I was so looking forward to saying goodbye and squaring that circle, coming to some sort of end to this whole process but there's always something there to remind me

I KNOW I should be glad to be alive, practice gratefullness, yes I'm lucky to have survived.........etc.  I AM grateful for all those things (although you might not think so sometimes in reading my posts, but they are always of the moment like this one to reflect the roller coaster that is cancer) but I just want it to go away now and get on with my life which I'm trying very hard to reconstruct.  But unfortunately I'm not allowed to reconstruct the thing that is causing me so much pain - my breast.

Interestingly, if I had had a mastectomy I could have had reconstruction 6 months afterwards but I figured I could live with crappy breasts for a year rather than 6 months with no breast and a really really big op to reconstruct.  That taught me, didn't it?

I am really really pissed off and sad.  I have a sentence of yet another year.