I HAVE BREAST CANCER…NOW WHAT?

It always seems impossible until it is done. Telling people you have cancer is one of the hardest things to do. When I was first diagnosed I couldn’t say it out aloud. Instead I sent out emails and posted my diagnosis on Facebook. I kept people updated on Facebook filling them in on my appointments and how I was feeling.

*Please note this post contains medical stuff and may have emotional triggers.

When I was first diagnosed I couldn’t say it out aloud. Instead I sent out emails and posted my diagnosis on Facebook. I kept people updated on Facebook filling them in on my appointments and how I was feeling. I remember about ten days after diagnosis I caught up with a friend at my local café by the beach I thought she knew about my cancer as she was also a Facebook friend.

She chatted away filling me in on all her renovation dramas and then it dawned on me that she didn’t know. I grew nervous as I knew I was going to have to break it to her. I was going to have to say it out aloud. My stomach felt like it had a dark, heavy weight in it. I found myself not really taking in what she was saying as my mind searched for the right words. I needed to tell her but when was the right time? How do you stop someone and tell them you have cancer? Oh God, here goes…

“Well I’ve got some news”, she leaned in and I could tell she wanted to know more. Maybe she thought we were buying a new house or going on an overseas holiday. “Oh hun I don’t know how to say this, it’s the first time I have had to say it.” Her concerned look made me falter and a nervous giggle escaped my lips, how could I be giggling at a time like this? I couldn’t look her in the eye and I just blurted it out “um… I have breast cancer.” Oh geez, there I did it I had said the words breast and cancer together out aloud for the first time. I can still see the way her face dropped and the cluster of emotions that came across her face all at once. It was painful to watch and I felt awful for being the bearer of such awful news. It still makes me emotional when I recall that day.

I had thirteen days from when I was diagnosed before I first met with my breast surgeon, thirteen days that felt like months. Every time I saw someone that I knew I wondered if they knew, grocery shopping was the hardest. Some people would see me and turn and walk away, too afraid to face me. Other people would seek me out and with pity in their eyes ask me how I was going. The pity and sadness on people’s faces was the toughest, I was trying so hard to hold it all together but when I saw ‘that look’ it just made me incredibly sad. It made me realize that this cancer caper was really happening…it was happening to me. People would tell me to be ‘strong’ and to be ‘positive’ I hated this. I hated the throw away lines.

Of course I don’t intend to wallow in self- pity and of course I want the best possible outcome. When you tell me to “just be positive” you take away my power to show and feel emotion. You’re telling me I have to hold it together and you make me feel weak if I crumble in front of you. I know people mean well, but really just try to come up with something that has a bit more personal substance.

I like it when people ask how I’m feeling or ask where I’m at in my treatment. Keep it simple you don’t need to throw every positive affirmation at me. I’m trying to work through the shock and fear. I’m grieving and dealing with a new language…doctors speak. I’m feeling guilt for putting my children and husband through this bloody awful cancer caper. My mind swirls with thoughts of leaving this earthly world too early…leaving the family I love behind, scarring my children forever and hoping I don’t leave them motherless. I’m trying to hold onto the hope that things are going to be fine but the mind is powerful and thoughts creep in when I least expect them to.

At times I can be having a normal conversation with someone and suddenly the emotion of my reality bubbles to the surface. I didn’t ask it to raise its sad head, if I push it down I will only have to face it later…god knows what damage those awful thoughts could do to me in the meantime. So I face it, I allow them to surface. It’s usually only for a brief minute that my eyes will fill with tears and my voice will tremble, sometimes I might have to take a deep breath and fan my face and then it passes…there all gone.

So please don’t tell me to be strong because it makes you feel better…when you say “it’s ok let it out” you give me permission to feel and work through these jumbled feelings.

The thirteen days following my diagnosis were busy, busy in my mind and in day to day life. I met up with friends for long lunches and coffee and cake. My beachside café became my meeting place. I liked staring out at the ocean and the hustle and bustle of people. When I went there alone I enjoyed the noise it kept my loud thoughts a little quieter and people watching was a welcome distraction. My mister and I escaped to the café in the evenings to talk and share our thoughts away from the children.

I started journaling and would take myself off there in the mornings to sit and write and heal. I try not to plan too far ahead, I just go with flow sometimes hour by hour, I really want to take the time to work through my feelings. I don’t want to be angry or bitter. I don’t want to feel sorry for myself and drown in a sea of pity. I want to be informed and in control. I want to feel love and give love, I want to be grateful.

I’m grateful to the stranger who complimented my outfit and made me feel pretty and for the girly catch up with friends by the beach. I’m grateful for the seven dollar crop top I found at K-Mart which doesn’t aggravate my sore bung boob.

I’m especially grateful to hear my mister sing in the shower because I know that in that moment he felt carefree and thoughts of cancer were far from his mind…I am grateful he chose me.

In those first thirteen days there are times that I feel flat and teary, it’s the uncertainty. Not knowing is hard…really hard. I have done a lot of research which on one hand is great because I will go to my appointment with the breast specialist armed with knowledge and questions, but on the other hand I know the possible treatments and outcomes…just not mine.

I do know that I will have surgery for a lumpectomy or a mastectomy and that life after surgery will be difficult with limited arm movement for a few weeks so I choose to have my hair cut short in preparation as it will be easier to handle. I don’t mind my shorter hairstyle but at times I find myself resenting it, it feels like cancer was forcing my hand and changing me already.

Craig and I lay in bed at night in the darkness and share our fears. We worry about surgery, treatment, the kids, bills, money and how I will juggle my job and this cancer caper. We worry too much and fall asleep exhausted.

I question my mortality and  don’t understand why my brain allows these thoughts to seep in. My thoughts trail back to several months ago when I was reading a magazine article on palm reading. I was trying to find my lifeline. Damnit where the fuck is my lifeline?  I think I found it but there was a break in the line, what did this mean? Was this the burnout I experienced earlier in the year or was it my cancer? Oh God I hope I make old bones. Aarrrggh why are my thoughts so bloody jumbled and random?

On the first of October I awake in a different frame of mind. I find acceptance. I am not bitter or angry and I hold no blame. I don’t feel the need to know why I have cancer…I just do. I’m in this like it or not and the only way through it, is to go through it. My focus is to be rid of this cancer and to do whatever is necessary to prevent it from ever returning. I do not have to like my cancer and what it brings into my life but I do think it is healthier for me to just accept it and rise up to it…meet it head on.

This doesn’t mean I’m not scared or sad because I am. I may not always be brave and there may be times I will cry…sometimes this is what will be needed and I am ok with that.

The first of the month brings another first as I find myself cracking jokes about my cancer with my hubby and kids. My cancer is like an uninvited relative that has come to stay and we all have to endure it so we all need to make the best of a bad situation. We need to be able to talk openly about it and not be afraid of the “C” word. The more I say the word “cancer” the easier it becomes.

It’s only two more sleeps until we meet with the breast specialist at the hospital and I’m eager to get it done. I need to have a plan, a path to follow. I go to bed and dream when I wake I relay my weird dream to my mister. I dreamt I have my whole left breast removed it was so vivid and real…except the part where my breast looked like a hard- boiled egg when they cut it open WEIRD! It was disturbing and woke me from my sleep, strangely though I knew I would be having a mastectomy and I was ok with that. It felt like I had a plan.

The night before we meet with the breast specialist my mister and I sat in front of the television channel surfing, it’s after ten pm and we know if we head to bed we won’t sleep. Just by chance we stumble on a documentary on breast Cancer by UK journalist Dawn Porter. She follows women on all different paths of the breast cancer journey. Some women have had precautionary mastectomies, some have had lumpectomies, some are going through treatment and some have refused it. She looks at reconstructions and even shows a mastectomy surgery.

We watched in total silence taking it all in. I couldn’t believe how lucky I was to have stumbled across this programme as it answered many questions and showed me that I wasn’t alone, there were women from all walks of life facing the same thing I was facing.

The mastectomy surgery was extremely graphic, it was confronting and even brutal in parts but as someone who likes to be armed with information it was exactly what I needed to see. When the show ended we sat in silence, both drawing deep breaths but I needed to escape so headed for the bedroom.

The enormity of the path that lay ahead hit me and once again the sting of hot tears filled my eyes. I couldn’t believe that I would have to go through all of this….little did I know just how much more I would have to go through. My mister and I dissected the show and went over the options and the “what ifs’. We wanted to go to our meeting in the morning with questions and some sort of plan.

I had dreamt I would have a mastectomy and the possibility of a mastectomy had played on my mind for days and I had decided that if it meant the difference between living and not living that I would choose the mastectomy. Craig was totally fine with my decision and supported me 100 percent. Of course I was concerned about body image and our love life.

Could he still love me if I wasn’t whole?

What if I was butchered?

What if he was repulsed every time he saw my boobless chest?

We talked about it for days and he consistently encouraged me to follow my gut letting me know he would always be there no matter what.

After seeing the Dawn Porter documentary I decide I wanted both breasts removed, more than ever I was steadfastly resolved in my decision to be free of cancer and any possible reoccurrence. My mister agreed and again I felt like we had a plan, we went to bed exhausted and apprehensive about our meeting in the morning. My cancer would change our lives forever…

 

Til next time,

Jen x

 

*recount of my cancer journey. Diagnosed Sept 2012.

Cancer council Australia