Thursday 27 November 2014

Things I should tell you

Today, I came across a piece of writing written by a lady to her friend, on the friend receiving a cancer diagnosis . It nails it , in so many ways, everything I'd want to say to you.

*Trigger-warning*  - Death and dying.

Please note I didn't write this piece , it was found on a blog of a young woman after finding out a friend had been diagnosed with breast cancer: [If you are the author or know her - please let me know.]
I emailed her to say that some people, upon diagnosis, want to connect. Others don't. But no matter what category into which she falls, I'd be there to listen if and when she is ready. When we do speak -- after she's described her fears, after she's unloaded her burdens, and after we've toasted our mutual membership in this hellish club through a bitter tipple of tears -- then, and only then, will I speak. And this is what I'll say:
"I will tell her that she has to take charge of her treatment immediately, even though she may not be prepared to do so.

I will tell her that if she's like most women with cancer, she won't mind losing her hair all that much, although when her eyebrows and eyelashes -- which she will be surprised to discover are what give her face its depth -- fall out a little further into treatment, she will likely look into the mirror and find herself staring at an alien.

I will tell her that although it may not feel like it now, she won't stop laughing and in fact will learn to laugh at things she never before thought funny.
I will tell her that she should ignore all the horror stories she hears about how cancer destroys marriages, and that if she has chosen well her disease will bring her and her spouse closer together.
I will tell her that she will lose trust in her body. She will regain it in fits and starts, but perhaps never entirely.
I will tell her that sometimes she will feel a deep sense of shame even though she knows she has nothing to be ashamed of.
I will tell her that when the voices rise in unison with their monotonous, incessant platitudes about how she'll beat this, about how one day when she is 90 she'll look back on this as something that made her so much stronger, it will be okay if she tells them to stuff it -- if she tells them that their blind optimism can be dismissive, belittling, condescending, and defeating.

I will tell her that when people fawn over how courageous she is, they won't understand that she's simply trying to get through the day.

I will tell her that her relationship with God, if she has one, will either be strengthened or weakened, but it will not remain the same.

I will tell her that when people say, "I just can't imagine what you are going through," it is okay if she thinks to herself, you use that phrase like a talisman, but it won't protect you at all.

I will tell her that she should disregard the statistics she doesn't like and embrace the ones she does.

I will tell her that as jarring as her new cancer-centered identity is right now, there will come a time when the cognizance of her disease isn't surprising anymore -- a time where she will find that when the knowledge floats to the surface while she is in the middle of some mundane task, she will say to herself calmly, "yes."

I will tell her that through her disease she will meet both remarkable and unremarkable people, and that she should take note of them all.

I will tell her that cancer will fundamentally change who she is, and who she believes herself to be, but that also, and in so many ways -- so many important ways -- it will not change her a bit.

I will tell her that, ultimately, her experience with cancer will be different than mine and so she should dismiss anything I say to her as early and as often as she wants.

But mostly, and finally, I will tell her two things.

The first: I'm so sorry. I'm so f*cking sorry.
And the second: There is much hope for you, my friend. Much hope for you and I. For all of us."

This month - 
*One friend was diagnosed with a recurrence of breast cancer , not metastatic that I am aware. She is recovering from surgery.

*Another friend was diagnosed with metastatic breast cancer in her lungs and chest wall.She almost died during the lung biopsy from complications. She told me she yesterday she was so glad she can spend more time with her family. How long ? No-one knows. The cancer is inoperable and she can't have radiation , last word is she'll start a Chemo tablet. Not a cure but time *
No - one knows why it came back - her original breast cancer diagnosis and treatment (Mastectomy , Chemo and radiation) was over 10yrs ago.

*A beautiful lady and mum, only 39yrs - who I don't know personally (only from a FB group) passed away this week from Advanced breast cancer (also called Metastatic / secondary / Terminal / stage IV - stage 4). She was a trail blazer amongst Breast cancer survivors and instrumental in setting up an online support group. They knew her last days were coming but it was still a heartbreaking shock - today is her funeral. I am gutted especially for her young sons, similar in age to my own.

*Two other dear friends are living with Terminal - stage IV Cancer diagnosis-es - one with Breast Cancer diagnosed not long before me. It is still one hellish club.

*Another friend sent me a sms today to say her mum has pelvic cancer  and her sister Ovarian cancer (had) ; my friend awaits testing.

What do I say ...

The first: I'm so sorry. I'm so f*cking sorry.
And the second: There is much hope for you, my friend. Much hope for you and I. For all of us."

The truth - it is estimated that 20-30% of all breast cancer cases will become metastatic. [O'Shaughnessy, J. "Extending Survival with Chemotherapy in MBC" The Oncologist 2005:10] - early diagnosis or not. That's not to dismiss that many out live the 5yr milestone - post diagnosis that is so celebrated.

It's scary and depressing ; if I let the facts consume me I feel overwhelmed every moment of the day. The stats for sarcoma are even worse  I could get it again in the same leg or anywhere due to the genetic condition I have. 

I am mostly stable, they are watching one tumour ? likely benign in my neck.My chest (breast-less) is clear . So far (as they can tell) while I have residual nerve damage, numbness and pain - my leg is okay.

In the near future I'm considering a hysterectomy and having my ovaries removed due to fibroids and to reduce the risk of uterine cancer or oestrogen igniting the breast cancer (which is one explanation for my friend post 10yrs though she is in early 50's)

Why do I feel like I'm dodging bullets everywhere ? I doubt I will ever work outside of the home again. I just don't have the confidence or mental capacity. Chemo brain is real and affects executive functioning. Fatigue is a factor as well.

I'm not idle . I keep as fit and active as possible . I participate in my community and I enjoy living. I also embrace the sheer determination to wring as much life as I can out of my life. 

"Find a bit of beauty in the world. Share it. If you can't find it, create it. Some days this might be hard to do. Persevere." Lisa Bonchek Adams (Stage IV Breast Cancer)

Lastly  -

*(Nov 28th - my friend's update - Dr's told her worst case is 4 months , or up to 40yrs if the new drugs work - imagine living like that !)  

So what bit of beauty in the world did you find today. Please share it with me.