This is a blog post I have been thinking about for a couple of weeks now. Someone wrote into the IBC mailing list with the subject heading “Have I lost my mind?” talking about how her head still feels fuzzy 6 months out from chemo and her memory was gone. Wow, do I know how she feels!
This coupled with the furore over the facebook status bra colour message that went round made me think even more about it.
When I first got diaganosed I came to the realisation that I was going to lose my long curly hair (-chemo)and my G-size boobs( – had mastectomy on one side and removal of a fibroadenoma and reduction on the other) I had thought those were the things that defined me as a woman, as me. And I mourned for the woman I was.
Since Gertrude entered my life I have lost my hair and my breast but I have also lost my good vision (steroids during chemo had hardened my corneas and they never properly recovered ) and three teeth (chemo again) so now wear glasses and a more extensive partial plate. While I am sitting here writing this I am wearing my glasses but not my teeth or my prostetic boob. And I am, if not ecstatically happy, comfortable with this in my own home. If I go out or know we are having visitors (in a more formal way – my sister and my daughters boyfriends etc know if they turn up they might find me gummy and one-boobed) I will put on my bra with prosthesis and put my teeth in – unfortunately its the front teeth that have all gone. But to a large extent that is to present an image to the outside world not about who the real me is.
Dont get me wrong I still miss my breast but once it became Gertrude it wasn’t my breast anymore. It still makes me feel weird and I feel uncomfortable in a sexual situation with OH about showing him my no-boob. At only 47 years of age I still want to be sexy and attractive (I know – too much information but this is how I feel)
But since finishing my first treatment and starting my second I realised the thing I miss the most is my mind. I am no longer the same person I was. My brain doesn’t work the same way. I can still write a fairly articulate blog post but it frustrates me that when I go to write that the words dont flow as easily and eloquently as they used to. I make a lot of typos and spelling mistakes and don’t pick them up when I am proof reading before posting. Which makes my post look like they were written by someone less intelligent than I am or was. I am hoping to start a degree course in Social Work and I wonder how articulate my assignments will be.
I’m not trying to be self aggrandizing but my IQ was officially tested at 136 when I was younger (not one of these internet/facebook test) but properly tested. I can honestly say I don’t think my IQ is that high anymore.
I used have a near photographic memory for certain things: names, numbers, facts and figures but that’s gone. OH used to call me his personal diary because he was hopeless at remembering that sort of thing but I would remember, neither of us used to write stuff down because I would remember it. Now sometimes when he asks me I give him a blank look, shrug my shoulders and go “Don’t have a clue – sorry “. My short term memory is even more compromised. I don’t remember things that happened yesterday half the time. I am seriously considering starting one of those “a year in the life of” journals and taking a photo everyday to remind me where I was and what I was doing. My daughters will tell me about something that is happening in their lives and then talk to me later and I’ll look at them blankly.
It frustrates me that I have to use a calculator for sums I used to do in my head and dictionary/spellchecker for words I should know the meaning of or how to spell.
This is the price I paid to live. The treatment for cancer killed part of my mind, and I have realised that is the most important part of me! No prosthetic brain is available to replace what I have lost.
It’s a conversation I have had with OH that the mets that I am most scared of are metastases to my brain. Or treatment that stops me being able to think like me. If I lose my personality along with the cognitive abilities. I have said that is the point at which I will stop fighting this disease – mets to other organs /areas of my body and pain I can handle but I dont want to lose me!