Breast Cancer Awareness Month - Leisa's Story

Breast cancer is a topic that is close to my heart, and Breast Cancer Awareness Month is a time for me to reflect on my own personal journey.

You may or may not know that in October 2011 I was diagnosed with breast cancer.  I was only 38 years old. Too young, right? It couldn’t possibly happen to me. I wasn’t doing regular self-checks and I’d never had a mammogram. You only do that when you get older, right?

I was lying on the floor one day playing with my three-year-old nephew when I felt something beneath me and lifted myself up to see what I was lying on. Nothing. There was nothing there. I quickly ran my hand over my right breast and felt a small lump. I left it until I got home later that day to investigate further, and there it was; a small yet definite lump right there behind my nipple.

 As you do, I did some googling and read how sometimes small lumps can come and go with your menstrual cycle, so I thought let’s not panic - let’s just see what happens. A couple of weeks later I was in Canberra exhibiting our Mookah range at a market called Handmade Canberra. Every time this event is on, they have a not-for-profit organisation collecting gold coin donations and raising awareness for their cause. This time it was the BCNA - the Breast Cancer Network Australia.

This immediately made me think of my lump. What was I doing? I needed to get it checked out, but I didn’t want to. If I ignored it, it might just go away…right?  During the event, the volunteers from BCNA made the rounds of the market, handing out guides on how to ‘self-check’. One volunteer had quite a lengthy chat with my mum, who was helping me out at the event, but I stayed back. Stayed silent. And my mind started racing. The decision was made that as soon as I got home, I would make that appointment. And thank God I did.

The doctor had a good look and feel of my breast, and said it wasn’t certain until we did some tests, but yes, she thought it was very likely I had breast cancer.  What? No, that couldn’t be right. I was only 38 years old! The next thing I knew, she was asking me if I was diagnosed with breast cancer, which hospital would I prefer to have treatment at? We then discussed a specialist to refer me to for testing, and not just writing the referral, but making a booking on the spot for testing. Things were progressing way too fast. She asked if I was right to leave, and did I have someone to talk to? 

In the week or two following, I went through mammograms, ultrasounds, biopsies, blood tests, and visited the specialist and surgeon I was going to be seeing a lot more of. I can still remember lying on the bed, with that clear gel smeared all over me while an ultrasound was done, seeing the images come up on the screen above me, and shaking uncontrollably.

Everything was happening so quickly! The appointment with my surgeon confirming the diagnosis. My treatment plan of six months of chemotherapy in three-week cycles to reduce the size of the tumour, followed by a highly recommended mastectomy, and then radiotherapy, with hormone blocking medication to be taken for the next 10 years. Wow - mind blowing! How does one absorb and digest that information? All I could think initially was, “I’m going to die”.

Within a matter of weeks, the treatment started. I was well aware that I’d lose my hair. Two or three weeks they said. I’ve never been particularly vain, so I thought I’d be ok with it all. I planned to shave it all off before it all fell out to take control, you know. Well, I wasn’t quick enough. I’d started losing strands here and there, so thought I’d have time, then one morning I was in the shower washing my hair and it completely matted into one big lump on top of my head like a great big bird’s nest and I couldn’t do anything with it. I completely broke down.  I didn’t expect that I’d do that. I thought I was stronger than that, but it turns out I’m just normal. A blubbering mess, I immediately rang my sister and she raced over to my house. She made a quick phone call to a friend, who was a nearby neighbour, to come over with her clippers to shave it all off, but that’s not the way I wanted it to go. I wanted to be in control. To take it, before it took me. 

The months that followed were difficult. Chemo and I certainly weren’t friends. I got in a routine where I’d have my treatment, then spend five or six days at my parents’ house, so they could care for me while I couldn’t look after myself, then I’d return home to my house before the next cycle started. Thank God for family.

One of the most difficult things for me during this period was not necessarily people seeing me without hair and losing weight but having to see and tell people I knew that I had cancer. Well that, and seeing people I knew (and not even that well), that didn’t say anything at all because they didn’t know what to say. No one knows what to say; they just stop and say hello and give you a hug, but the lack of acknowledgement hurts more than doing or saying the wrong thing.

After a few weeks post chemo, surgery for the mastectomy was scheduled. This was the part that freaked me out the most. Big surgery. Scary. Again, I remember lying on the bed and physically shaking before I was wheeled into the surgical room, waiting for the anaesthetist to do his work. I remember my surgeon saying, “Your work is done - now it’s time to leave it to me to do mine. Just relax”.

It went very well, they told me. Apparently, my family members saw me back in my room post-surgery, but I didn’t remember a thing until I woke up the next morning. I was scared. How do I look down? What will I see? Thankfully I was bound up like a mummy, giving me time to digest what had happened.

I had opted before my surgery, on the recommendation of my breast surgeon, to not have a reconstruction at the same time as the mastectomy as the radiation treatment can compromise the overall result of the reconstruction. For this I was glad; the mastectomy was more than enough to deal with at one time.

As I recovered from this surgery, the next challenge that confronted me was a prosthesis. A fake boob or chicken fillet, whatever you’d prefer to call it, to insert into my new prosthetic bras so that I looked balanced and normal. Normal. There was nothing normal about this. It felt weird and uncomfortable, every single day. I had to be very selective about the tops I wore so they didn’t show the chunky straps of my bra. They couldn’t be anything close to low cut because you’d see my chicken fillet, and the arm holes couldn’t be too low or loose, as you’d see the surgical lines. This was tough - and don’t even mention summer and bathers!

Less than two years later, I booked in for my reconstructive breast surgery. I could never opt for breast implants; it always had to be natural or not at all. I had a TRAM (transverse rectus abdominus myocutaneousa) flap reconstruction, where they take a flap of skin and flesh from your stomach to recreate a breast form. This was big and scary, with a long recovery period. It certainly wasn’t easy, but I don’t regret a minute of it. The surgery allowed me to be ‘normal’ again. To be me, and to wear what I wanted, and not be self-conscious in the clothes I wore and the movements I made.

This personal experience has certainly played a part in the design of the garments created by Matta Clothing; the label designed by my sister Nicole and I in coastal Inverloch, and all handmade in Melbourne.

Straps must be wide enough to cover bra straps. Necklines can’t be too low, to show off too much cleavage. Armholes can’t be too loose so that you see too much bra, boob or surgery lines. Not prudish, but just so - you know?

Eight years on this October, and here I am. I’ve been on one hell of a journey, but I’m here, and for that I am thankful. After eight years, a lot of the details have disappeared unless I really concentrate on the details of the journey, but I don’t think that’s a bad thing. I think it’s a sign I’ve moved on, and while I haven’t forgotten, I’m not allowing this experience to dominate my life and my memories.

I wasn’t planning on sharing so many details of my story here, but it is what it is.  If you’re still here with me, the moral of the story is… 

Don’t be a Leisa.  It’s October and it’s Breast Cancer Awareness Month. Check your boobies!!   

Make sure you’re doing your own regular self-checks, and if you’re not sure how to, ask your doctor. It may just save your life.

Breast Cancer Network Australia

Leisa xx