Amanda's story

I liken my cancer journey to a drive up an alpine road; full of hair pin bends and switchbacks that leave you never knowing what lies ahead and always heading uphill, slowly and not without a touch of fear. You grip the steering wheel

tightly, trying to maintain control over some aspects of the journey and never really looking very far ahead to see what’s coming. Once you get to the top, the end of your road, the outlook is spectacular and the horizons infinite when viewed from such a summit. Reflecting on the past twelve months of my life, I feel that Breast Cancer Care WA was my St Christopher, watching over me as I negotiated the highs and lows of dealing with breast cancer at the age of 46.

Finding a lump

My experience began with the discovery of a lump in my left breast in late April 2011. I was due for a mammogram which I duly had. This was soon followed by a day at the Royal Perth Breast clinic where I had more tests. It was during these that a second lump was found, this time in my right breast. The end of the day brought with it the diagnosis of early stage breast cancer in both breasts. It was then only a matter of days and I had an appointment with a breast cancer surgeon and a date for lumpectomy surgery pencilled in. It was while in hospital after the first of my two lump excision surgeries that I was introduced to those guardian angels that we know as breast care nurses.

I was trying to deal with the shock of having breast cancer whilst keeping it together for my husband and two teenage sons. The breast care nurse at Murdoch Hospital was very kind and open with me about what I was likely to experience and feel. More importantly, she gave me the number of Breast Cancer Care WA and when I went home I received a phone call from Heather. This lovely, gentle voice became my lifeline as my just commenced journey was approaching one hell of a blind corner. It transpired I needed additional tissue excision. Also a sentinel node biopsy indicated the cancer had quickly spread to the first lymph node in my left side. Heather knew all the things I should ask my surgeon and assured me that my queries and fears were not only normal but necessary, if only to help me make my way through the information overload that my family and I were facing.

I’ve always been a pretty independent person. Coming from a rural background, I have always seen myself as pretty tough and not one to openly express or demonstrate my inner feelings. I don’t like talking about myself, at least not when it comes to emotions. It was Heather who suggested I might benefit from having someone to talk to about the emotional things to balance out the chats she and I had about the physical and practical issues I was dealing with. Enter Cathie, who as my counsellor at Breast Cancer Care WA, cut to the chase on our very first meeting. She recognised my reluctance to delve deep into how I was feeling. I think she knew, even when I didn’t, that a lot of the time I didn’t really know how I was feeling. On our first meeting, Cathie advised me that I had a long road ahead of me and showed me some relaxation techniques. Little did we know how long that road was to become and that I was going to need a lot more than relaxation techniques. What I appreciated most about Cathie’s initial visits was that she didn’t push me into disclosing anything. She just made mild observations and referred to her wider experience with women who’d travelled this road before. It was this calm and unforced approach that characterised the advice and support from both Heather and Cathie. It suited me and my nature and was really empowering, which is the greatest form of support you can get, especially when so much that you go through when fighting cancer is out of your control.

Facing chemotherapy

When it came time for me to commence chemotherapy, I’d had three months of surgical treatment and recuperation under my belt and I was feeling pretty strong. The surgeries had gone well and even though the lymph gland excision procedure had some unpleasant and discomforting impediments to getting on with things, I had got through this stage remarkably well. This was in no small way enabled by the support from Breast Cancer Care WA. The fact my two sons and husband were managing to carry on with daily life reasonably smoothly was crucial to my emotional wellbeing. Having Cathie and Heather at the other end of the phone whenever I needed them gave the men in my life a much valued morale boost too. 

To say the prospect of chemotherapy terrified me was an understatement. I was trying so hard to be brave on the outside and to many people, that was what they saw. Because the focus of my treatment had shifted from surgery and breast care to clinical and physiological care, I started to think more about the things Cathie had talked about during our sessions. We had only met about three times by this stage but she packed a lot of advice into our meetings. Even though I hated fronting up week after week, chemotherapy didn’t end up being the horror that I had anticipated. I consider myself very fortunate in this regard and I attribute a degree of my coping so well with chemo to my positive attitude once I got into the swing of the treatment schedule. Who do I thank for that? Cathie and Heather because they allowed me to feel whatever I needed to feel without judgement or comment. I was getting pretty good at talking about myself by this time and I found this to be quite a revelation. The advice Heather had given me in regard to how to face up to surgery was applicable in part to how I approached chemo. The nurses at Murdoch’s chemo clinic often commented on the intelligent questions I would ask and commended me on the active role I took in managing my symptoms and roller coaster of emotions.

On the subject of roller coasters, at this point I came to a stomach-dropping stage in my journey. I was coming to the halfway point of chemo when I was advised by the genetic screening clinic at KEMH that I had sufficient cancer in my family to warrant strong consideration of a preventive mastectomy. I already had a follow up appointment booked with my breast surgeon once chemo was finished. This was to be the time when we discussed my options for long term health gains. Needless to say this was one appointment that I wasn’t looking forward to. Heather’s occasional phone calls, just to see how I was going were invaluable during this phase. I would tell her of upcoming appointments and what they were about and she would call afterwards to see how they’d gone and how I was coping. I always felt so brave and capable after talking to her, even when I was facing the prospect of a bi-lateral mastectomy and reconstruction. There were tears but I never felt like the situation was hopeless. With Cathie and Heather, I always came away from our chats having learnt a little bit more – either about what to expect, my treatment options or about myself.

The chemotherapy treatment ended in early January. I had a month before I met with my breast cancer surgeon, a month before I had to commit to a course of action that was drastic and previously inconceivable. I made the most of January. I felt well, the side effects of chemo wearing off, the summer weather glorious and to further take my mind off what lay ahead, we put our house on the market and bought another house in a street a few blocks away. This turned out to be a really pro-active step, despite people thinking our timing was crazy. Our lovely new house was set up and ready for me to come home to after my mastectomy and provided me with a sanctuary of calm that was such a positive and powerful recuperative step.

D-Day (or should that be B-Day?) arrived. I’d used the past couple of months to research the pros and cons of a preventive mastectomy and arrived at the decision that it was the best course of action. My surgeon was great. He let me prattle on for a while and I was the one who articulated that my decision was to go ahead with a bilateral mastectomy with immediate reconstruction. He concurred that this was his recommended course of action too. When he said this, it was like the advice and support that Cathie and Heather had given me all along came together. I was the one who was making this huge decision. I was the one in control. I alone was the one who was going to beat my cancer.

While I was in St John’s Subiaco, I had the most amazing care and attention from my plastic surgeon, the nursing staff and of course Breast Cancer Care WA. Heather came to visit me on about day four post-op. This was such a lovely gift – her time and care and interest. At the time of her visit, I was feeling physically well and psychologically pretty good, so much so that I showed Heather the “after” view of the surgery in response to her saying she’d never seen the type of reconstruction surgery that I’d had. This was another turning point for me because I had been advised not to even look in the mirror after the surgery. It was pretty confronting but it was real and unavoidable and like so much of what I had already dealt with, I had come to learn that my approach was to face up to the realities at the time and deal with the emotions as they cropped up. I formed the belief that there’s no point worrying about what you don’t know might happen. You can only deal with things as they actually occur. By facing up to the realities, such as I was swathed in bandages, had rocks where my breasts used to be and was bruised to kingdom come, at least the worst was over and I could look forward to seeing what magic my plastic surgeon could wield as we went through the reconstruction process.

Returing to work

I was facing the prospect of having to return to work within a couple of months so this dictated the pace at which the tissue expansion and implant procedures could progress. As it happened and by now no-one was surprised, I adapted well to the uncomfortable and occasionally nerve-wracking final stages of the reconstruction of my “breasts” and I was ready to return to work with a couple of weeks to spare.

Some of the most unexpected and unwelcome feelings I have encountered since my journey began came when I returned to work. From the high of having emerged from my experiences, intact physically (more or less!) and psychologically came a low of earth-shattering proportions when I came to the realisation that I didn’t love my job anymore. That which was such an integral part of who I am (a high school teacher at a top public school) for 24 years was no longer important to me. I was not prepared for this at all so I was grateful when Cathie responded promptly to my email requesting a visit about a month after I returned to work. True to form, she assured me that what I was feeling was perfectly normal and quite common. My perspective had changed. It wasn’t that I didn’t care about my job and my students; it was that I cared about other things more. We talked about what “normal” was and how I had to come to terms with a “new normal”. It was quite timely that the Beacon issued its next magazine that dealt with exactly this and I found it backed up a lot of what Cathie was saying I could expect to deal with.

I guess what I found hard was that when I was back at work, only three days a week mind you, everyone was so pleased to see me that it was quite overwhelming. I had presented a very positive and public front to my work colleagues, many of whom kept in touch during my illness and treatment so I felt I had to maintain this now that I was back in a work routine. I think it was as much about reassuring my friends and family that if I was okay, they could be okay too.

Similarly at home, there was the perception that now that I was better, things would return to normal and everything would be like this never happened. From the outside I looked as good as I ever did. The trouble was, every time I had a shower, or moved in bed and my chest and back muscles felt a different, unfamiliar kind of strain, I was reminded that life won’t ever be the same. This is not necessarily a bad thing; it’s just something to be mindful of, as Cathie warned me. Her perceptiveness was timely as she advised me on a subsequent visit not to make any rash decisions about work. (How did she know that I seriously wanted to quit my job?). She also comforted my disquiet about my feelings about work and home, encouraging me to remember to continue to put myself first and to be kind to myself.

I think the thing that has remained with me the most since my “new normal” life has settled in is that time is what makes all the difference. When you are faced with the terrifying prospect that your time on this planet may be up, when you get a chance to press “reset” on your own personal stopwatch, you become ever more aware of the preciousness of those seconds ticking away. Like the speedometer shows as you’re driving back down that alpine road, you’re going a little faster this time. The road is easier to navigate, but at the same time, you slow down more often and take the time to admire the scenery.