Co-Survivor Award: My Mom and My MAN

Way back when I was first diagnosed and wrote a profile for myself for Bumpyboobs and FacingCancer.ca, I identified myself as a survivor. Forget dictionary definitions, I defined a survivor as someone getting up every day, facing what needed to be done, learning how to thrive through uncertain realities, and living life on their terms.

My life, my definition.

So when FacingCancer.ca recently announced their Co-Survivor Award, it made me really happy to see their definition of survivorship:

We believe survivorship begins at the time of diagnosis.

And it made me even happier to see that they’ve decided to honour those who have supported us, honouring the support they’ve given.

And surrounding every cancer survivor, there are people who care: we call them Co-Survivors. Whether it’s a friend, a family member, a medical professional or an online supporter, use the form below to tell us who has made your cancer experience a little better with their selfless support.

There have been many people in my life who have helped. From friends in England, family in Canada, letters & emails from my friends during treatments, support during my crowdfunding, and the awesomeness and insight of those who get it online. But for the Co-Survivor award, if I could nominate someone (and I can’t because I work for FacingCancer.ca), it would be two someones: My husband and my mother.

Zsolt is Zsolt. You know him via this blog. He is softness and love and unconditional support. We’ve been through so much together and still we dance in the middle of the day. There’s so much to say, I really cannot begin to capture it all.

My mom, well, she’s my guide, point of reference and my friend. When I hear one thing regarding healthcare, I’ll take it to her for her opinion. And I’ll never forget how she left Canada and my dad for over a month (to sleep in our small one bedroom apartment on an air mattress in England) to help me recovering from the mastectomy – and then to help Zsolt and I weather that first terrible round of chemotherapy.

So here is the question: Who is your co-survivor, or co-thrivor, or co-awesomnesser?

award

If you live in Canada and can think of someone you’d nominate as co-survivor – then I invite you to pitch in your story over at FacingCancer.ca. Ten from the many will be chosen, and then we’ll agonize over them to land upon the first Co-Survivor recipient (but the ten will also receive goodies, too). Can you think of someone? Nominate here.

If you don’t live in Canada, and I know many don’t, but still want to share who has supported you , that’s what the comments are for ; ) People do read the comments, and they do pull inspiration from them – even folks supporting others, and needing to hear the positive impact their actions may have. Or even better – write about it on your own blog, and then link it back here. ;)

And you know what? Even if you haven’t had cancer (I hope), you may still have a co-survivor in your life, or co-supporter. I love stories about love, and about generosity, so I welcome you to leave your own reflections.

Now, that is all I have to say about that.

Except this P.S.!

P.S. I wasn’t asked or prompted to write this post for the award. I just like the idea. Everyone who does something kind for another person deserves to know their impact. This is just one really great way of saying thanks.

 

 

Lean In? Sometimes I’d rather Lean Away.

So, I have an on-again, off-again book club, and one of the books we recently discussed was Lean In by Sheryl Sandberg. She is the woman in that popular TED talk, which exploded into a book/movement to ‘lean in’.

lean in

The book is for women in the workplace. Or rather, it’s for women who want to excel/climb the ranks in the workplace. She is essentially looking at why we don’t have more women leaders, and a LOT of that reason, according to Sandberg’s discussion, is about children/family.

That is to say, women anticipate having children, and so they back away from work. There are other aspects, but this point is one that interests me the most. Essentially, she suggests that even before meeting the loves of their lives, women are already planning their exit strategy for motherhood. And therefore, they are less ambitious in their jobs.

Okay, I can get that. In fact, I’ve seen that actually happen.

Now why am I talking about this today? Because I’m curious about leaning in from the perspective of cancer.

Sandberg argues women should lean in so that if they do have kids, when they return from their mat leave they will be in a good position. Focusing on advancing your career is worth it for the places it will take you, and because when you come back  to work you’ll be at a higher level.So, say instead of babies you have a possibly shorter life span on your mind. Are there similarities here? Should we ‘lean in’ and create a legacy of some kind? Does that kind of stuff even matter? Why bother leaning in if the clock is officially ticking? Is the assumption of illness, change, or even death reason enough to not go for a promotion or try to rise up in a company? Better yet, those diagnosed with stage four cancer – are we more likely to lean away?

Maybe it’s a matter of time. But that’s the one massive question that cannot be answered. It could be a year, it could be twenty years, it could be . . .  well, who the heck knows?

I’ve met one woman who choose to lean away. She was counting down the days till retirement and was diagnosed with stage four breast cancer. Instead of retiring, she went on disability as she slid into depression. Somehow, to her, being on disability rather than being retired seems to equate to missing the golden ring. But then, I reckon the depression contributes to that perspective.  She is emotionally disconnected from joy, and that is really crap.

There are other women – younger ladies in the thick of motherhood, diagnosed with stage four and choosing to stay home. They’d rather spend time with their kids, and who is going to argue against that? That makes all kinds of sense to me. They are leaning into what matters most to them.

And then there is me. To lean in or lean away? This past autumn had me leaning in to get the book done and out. It was a very good decision, and what an experience. Also, I worked during that time too, even right after diagnosis when life was nothing but brick walls. Though to be honest, while we build Zsolt’s business I don’t have a choice whether or not to work. I must work. We need to eat and pay rent :) Retirement isn’t an option. Heck, I’m only 31! There is nothing to retire.

But even if I’m working, should I be leaning in? Should I try to grow my career or be content as it is? Is it fair to my employers if I apply & get accepted for a higher position? What if I get sick again, and their investment comes to nothing? Is it selfish to lean in? Do I even want to lean in?

With my book it is different. I like to lean in because it’s just me. Either I sell or I don’t sell. Either I create or I don’t create. No one else is impacted. But even with writing . . . well, there are these scans every few months . . . there is that constant limbo. Life itself is an emotional stop and go.

There’s a point in here somewhere . Actually, no, there isn’t a point. There is a question: Do you lean in, and what does that even mean to you after being diagnosed (or someone you love being diagnosed) with cancer? And if someone told you time was limited, would your career even remain a focus?

What do you think? Leaning in post-cancer, leaning in at stage four . . .

I lean into what I love, that’s for sure. But as for the other stuff, I don’t know. I found myself not committing and using “I had cancer, so I don’t’ want to waste my time on crap that doesn’t matter” as an explanation for that – whether or not it is a good explanation. Honestly, I’d rather write short stories that make people smile. I’d rather capture someone’s story and help them feel special. I’d rather tweet and talk and doodle and create. I’d rather feel my heart get filled up with a job very well done. And most of all, I’d rather weave stories, even if it’s not catapulting me to the top of an organization, or even a bestseller list, it’s what I prefer to do. Now with the stage four, I feel that way even more.

Though as I said, I still need to pay my bills :) And really, my dreams are much bigger than just paying bills. I want to buy property and travel and live well and realize some huge ideas that must involve success. So, despite stage four, and not knowing what the next scan will bring, I actually do want to lean in. I want to lean in on my terms and with what I love.

So that’s a little from me. Now it’s your turn:

Lean in . . . what does that mean after fighting for your life? I’d love to know.

Sex, Cancer, and the Things We Don’t Say

Okay, this is it. I’m talking about sex again. It was ages ago that I spilled the beans on contracting vaginas, so now I’m back to give you a refresher and talk about an important project. Essentially, AnneMarie over at Chemo Brain Fog is once again going into lightly treaded territory and has decided to take on sexuality. I know—you know—we know this is a hot topic with the lid on tight. Beneath that cover there is serious bubbling happening.

sex talk

I can see the discussion on the rise. There are articles in Huffpost once in a while, bloggers have pulled back the curtain occasionally, and Facing Cancer Together has got stuff in the mix too. So there is a bubbling. Geez, even Dr. Canada once mentioned the usefulness in cuddling. That is all good stuff. Let’s get that pot exploding with conversation.

I admire AnneMarie for tackling this conversation with a large-scale project. Her book idea isn’t just about sharing one experience, it’s about collecting many. So this post has two things: 1) A little bit from me, since that feels fair, and 2) A little bit from her too with more to come on her own blog, later. After reading this, hopefully you move on to 3) A little bit from yourself as you anonymously fill out the survey. There’s one for you and, if they are open, one for your partner too.

(Chances are if you’ve read this far but never had cancer, you’re thinking ‘time to click outta here’ but hey, we are talking sex and that’s engaging. Plus, stress around intimacy can impact you whether or not you have had cancer. Okay, I’m being cancer specific – but it would be so naive to imagine other women and men don’t struggle with their bodies as life happens and things change. So while the survey is for women who have had cancer and their partners, this post is also for you. Thanks for being with us.)

Now for a little bit from me (but only the really embarrassing stuff).

You might know my story of intimacy during and after chemotherapy. Sex drive evaporated, lady parts tightened to the point of impossibility. Or at least, so I thought. After a load of work, and with the return of my estrogen, things improved loads. However, my lower area was never 100% healed. (Mind you, I was the only one who noticed. Zsolt had no complaints!)

pie

A distraction for those who want to skip the ‘details’. Look here! Then go down a couple paragraphs.

BUT then I was diagnosed stage four. The depression itself was a buzz kill, and then I went on Zolodex. This is a drug that essentially stops ovulation. The lack of lady hormones has again broken my vagina. It takes a lot of work for me to feel anything except pain down there. Thankfully I’ve learned to power through the experience (This is S&M in action, people. 50 shades of ‘fuck off cancer’) so that it can also incorporate pleasure, but  sex will never be easy again. Thank God for whipped body butter!

Zsolt and I talk about this, I cry as required, and we then have very intimate experiences together. But it’s hard and I often have a sense of dread toward what was once so awesome.

That is my story and those are my issues. For others it is surgery, chemotherapy, lack of bodily control, cramps from sliced muscles, exhaustion, missing body parts, etc. The point is, this is just my story. Many of you have your own stories. Now, here is a little of AnneMarie’s. I put on my ‘blogger’ hat and interviewed her.  Before we go further, if you want, you can fill her survey right here.  The survey is anonymous.

Now here we go, AnneMarie and her project! WOOOHOO for you AnneMarie!

Catherine (i.e. me, asking her, AnneMarie): Why do you want to write a book about sex and cancer? And how do you know other women/men are struggling with this as well?

The Amazing AnneMarie.

AnneMarie: First, I wanted to see if there was any interest, would others be willing to share their stories.  I attended a support group about body image issues many months ago and the conversation immediately turned to sex.  It was all women and we ranged in age from early 20’s up to age 70.  The room was packed; the conversation was lively and eye-opening.  I realized others are struggling with so many aspects of their sexuality.

It seems the topic is barely discussed.  I don’t want to write a self-help book based solely upon my own experiences.   Compiling stories from many different women is what I believe will make the book helpful to the widest audience.  Women who are single and dating obviously have different concerns than women who married or in committed relationships.

Catherine: Who are you working with for the book (there’s a doctor, right?)

AnneMarie: I’m working with a medical oncologist whose practice includes addressing sexual issues.  The doctor has chosen to remain in the background for now since the collection of the stories and having a true picture of what patients are feeling is crucial.  Interestingly, when the first narratives where shared, I discussed some of what I was reading with the doctor.  Some of the issues being shared were things that were never brought up by patients during their visits with the doctor.  Knowing that made me more determined.  This book may provide insight to our doctors and help them to ask the questions we may be too embarrassed to mention.  The doctors aren’t mind readers.  If we aren’t telling them everything, how can they even attempt to offer us solutions.

 Catherine: Can you share what’s in this survey, and why it matters?

AnneMarie: The survey is short.  All questions are optional.  I ask for age, relationship status, type(s) of surgery, ongoing treatment with tamoxifen or any other “maintenance” medications, disease stage, geographical location.  Those responses help put the remainder of the information into perspective.  For example, if someone lives in a very rural area, I would expect they may not have access to a large number of doctors so they may not have an opportunity to speak to a doctor who is well versed in issues surrounding intimacy or sex.  The most important part of the survey is a personal narrative.  I didn’t want to ask specific questions about sex.  I hope people will share their fears, their feelings or even specific stories that may be helpful for others to hear.

Catherine: There’s a survey specifically for caregivers. What are you hoping to learn from them?

AnneMarie: I am seeking information from caregivers or partners of patients because I think some of our hang-ups are insignificant to our partners.  What I mean is that we may be overwhelmed at the thought of someone seeing our altered bodies and for our partners, they aren’t looking at the scars.  I hope hearing from some of them may help us past our insecurities.  Hearing from partners is a means of breaking down a communication barrier that may exist in many relationships.

Catherine: Is there any personal story you’d feel comfortable sharing around this area?

AnneMarie: I am very insecure about my appearance since my breasts were removed.  Clothed, I’m fine.  I still change with my back to my husband.  My surgery was never an issue to him.  He did everything to assure me I was more than my breasts.

Many months ago, we had serious marital issues that resulted in a separation.  Shortly after the separation, I had to undergo a complete hysterectomy.  The combination of losing all of the rest of my female parts and being separated was one of the lowest points of my life.  This is not something I’ve ever really discussed on my own blog.  We are trying to work things out but it’s been difficult.  The thought of dating and possibly becoming intimate with a man terrified me.  How would I tell a potential partner that I have missing body parts?  Would I expose my chest to anyone or would I insist on remaining partially clothed?  Is there appropriate lingerie?

Having been married for so many years and then, being thrust into the world of dating, it was easier to avoid all of it.  The fact that I was in that situation and instead, just spent time with my female friends, made me realize I sex was becoming an insurmountable problem.  I have an excellent therapist and we discussed this issue so many times.  Intellectually, I know it wouldn’t matter with the right person, but I never got past that fear.  My marriage is still very much in the earliest stages of repair so this is an issue that I may have to face one day and frankly, it terrifies me.

*

Interview over, Thanks AnneMarie!

Now it’s your turn: If you’ve read this far, I reckon you care. So, share your experiences and let’s help one another. Again, you can find the survey, “Share Those Moments” here,  and if you are a partner, you can go over here to fill out your version.

It’s emotional, but it’s also so good to let these things go. There are way more stories that I’ve heard from others that could be shared here, but wouldn’t it be better to tell your story for  yourself?

Good luck. And thank you.

Catherine