Finding my own voice through the breast cancer journey: humour, sadness and smurfs.

May 2011, I recall sitting in the Breast Surgeons’ office and being handed a book. It was more of a manual than a book – a sort of ring-bound, half book-half guide that gave me ‘everything I wanted to know’ about the early stage breast cancer journey. The word ‘journey’ has stuck with me for a long time. I have asked myself: what sort of person wants to take this journey, should a journey be about choices and what if I wanted to get off the journey? What if that journey took me somewhere I did not want to be and who would have to come along with me? But I was expected to take the ‘journey’, gratefully accept the book as a Bible and wipe away my tears and fears with its glossy pages. I still have the book and I still hate the word ‘journey’. I was 38 years old with Stage 2 breast cancer and this is my journey.

When I first noticed my lump poking through my skin, I was immediately struck by the irony of just how much my breast cancer look liked all the many other text book images of breast cancer I had ever seen. I knew exactly what I was looking at – there was no chance I could dismiss it as a cyst or anything innocent or benign. You see, as a radiographer, I had spent a good amount of time learning about skin puckering, skin dimpling and skin discoloration. I often wondered how I, now a radiography academic, could not have noticed this earlier. After all, did I not grade my students’ papers on how they could recognise the signs and symptoms of breast disease? It seems in my own health, I would have to give myself a big fat F for fail.

So it was with almost an air of resignation that I visited my general practitioner for the referral and then proceeded to a radiology practice where I had worked years ago for a mammogram and ultrasound. The need to keep apologising for not coming in earlier kept tumbling from my lips and the thought that I somehow should have taken better care of myself and I should have known better kept churning through my mind. I recall asking through my tears to the wonderful radiologist who was scanning my lymph nodes if she was ever wrong – would I be the case where she had told a patient they had a local metastasis and in fact they did not? She slowly shook her head. I was a true-positive patient, a biopsy-proven, malignant lesion-containing patient and I would need to start my journey.

A lumpectomy, full axillary clearance and post-surgical infection later I was ready to start my chemotherapy. Tucking into Indian food the night before my first chemotherapy, I was lamenting that I would not be able to eat anything for the next 6 months (hello? I might get thinner from all of this?) as I underwent two types of chemotherapy in fortnightly and weekly blocks and so I should make the best of it tonight. But just how wrong I was! I soon realised that the one thing that cured my chemo nausea was eating, just like morning sickness, and I embarked on a self-medicating food fest of chocolate and hot potato chips. In fact, I often joked that I was a one-woman randomised controlled trial for curing my cancer, and nausea, through Lindt balls, McDonald's French Fries and vegemite toast consumption. There would be a journal article, with a high impact factor I would boast, of my experiences for volunteering selflessly in the name of science. Sadly what occurred was a combination of puffiness/bloating that can only be attributed to chemotherapy and stress eating and this seemed to only add insult to the loss of my hair, eyebrows and eye lashes. Chemotherapy stripped me of my fertility, my femininity and my fervour for life. The feeling that life could not get much more brutal was simmering just under my skin.

Luckily, sitting in the chemotherapy ward for my 14th visit, I began to realise how fortunate I was that my first therapy journey was finishing. Only two more doses and I would be free of the horrible chemical smell, the lilac gowns that never did suit anyone's complexion and the endless waiting for the i.v. drugs as they slowly dripped down. Having worked my way through every trashy magazine going, I knew more about the Kardashians’ than anyone ought to (secretly though I have become quite fond of them) and I would be graduating from the chemo ward to the Cancer Care Centre. I looked around at the people who were starting their ‘second journey’ – those that were back for more as the first was not good enough to prevent their cancer returning. Those that may not graduate. My hair was starting to grow back and their's was starting to fall out…again. Such experiences mean that I have not lost my empathy for patients and their highly personalised journeys. In the often overused lines, these experiences have ‘made me a better radiographer’ and I know the true meaning of the ‘there is always someone worse off than you’ mantra. These are my silver linings that I will hold onto carefully.

What has been a negative lasting legacy of my chemotherapy days is the feeling that time was ticking too slowly for me. That somehow the day was dragging on and I could not control the slow speed at which the world operated. I became, and to some extent am still, time anxious. Speaking with many other cancer patients, we seem to share a common bond that the combination of fatigue, boredom and frustration has left us with a fear of time. That somehow we have too much of it and that cancer treatment sucks the speed out of the clock in the same way that the relentless dripping of the raspberry red-cordial toxic drugs did for me over many weeks. I return to feeling this way nowadays when things are not going well for me and I recognise the same behaviour in my aunt who lost her battle with ovarian cancer more than 12 years ago.

The old statement that cancer patients are time poor is both an oxymoron and a cliché. There are a multitude of appointments that need to be attended at the beginning of treatment: weekly chemotherapy, blood tests, white blood cell injections and specialist reviews yet all of these take both too much time out of a cancer patient's day but at too slow a rate. Once asked to volunteer for a cancer drug trial at the end of my chemotherapy, I found myself unable to commit to helping the greater science community find a cure for my cancer as I did not have the time to participate and fearing it would take too long even if I did.

My views on chemotherapy were completely at odds with those of radiation therapy. After all, radiation was interesting, almost magical, and I understood dose and collimation. My second leg of the journey would have me back in the realm of medical radiation science (MRS), a discipline where I was comfortable and I felt cared for. But what I was unprepared for was the reaction my husband took to radiation therapy. Shortly after I commenced my radiation therapy, I overheard him say to my mother-in-law ‘you have NO idea what they have down there, it's barbaric’. He found the linear accelerator confronting, he had trouble reconciling radiation dose as a cancer-killing mechanism (after all, doesn't radiation also kill you?) and thought the advances of science would mean that I would not be treated on an imposing machine in a concrete bunker. I, on the other hand, was sailing through daily sessions of chatting with the radiation therapists about multi-leaf collimators and I learnt a lot; especially that radiation therapists like to draw all over your breast with a black Texta® which then rubs off on your white bra. Radiation therapy was the part of my journey that I knew more about than ‘that’ book (or so I thought!) and I felt in control. In all honesty, the radiation therapists were probably pleased to see the back of me, thinking ‘there goes that crazy radiography academic that never stops asking questions, she has driven us nuts!’ And so 30 fractions and a skin boost later and I was well and truly cooked like a well done piece of top-side steak left in the Australian sun.

I departed the Cancer Care Centre with no fanfare, no graduation ceremony – just lobster red skin, rapidly developing lymphodema through having my infra-mammary nodes irradiated due to tumour drainage to this area and two tattoos (and not even trendy ones at that). The conclusion of radiation therapy marked the end of my intensive cancer therapies, and despite progressing onto my current drug of choice, Tamoxifen, it appeared that the greater cancer fraternity considered I was cured, or could be cared for at an arm's length. But you see I was far from healed on the inside let alone the outside.

Having lived through the radiation therapy experience and watched and contributed to the advanced practice movement for many years as a radiographer, I can certainly say that more post-radiation therapy care via regular advanced radiation therapist specialist care consultations (see Freckelton 2012)1 would have allowed me a greater understanding of the side effects from radiation months after my treatment. Such post-care would have been hugely beneficial in the continuum of healing holistically and I am definitely an advocate for radiation therapists acting in patient consult roles. My views as a patient on the importance of after-care are well supported by other patients’ experiences as reported in the professional literature, if not also in current practice.2 I also hope that more radiation therapy departments would offer information sessions for support persons about the amazing technology behind radiation therapy. Perhaps some departments already do but we were not offered this and it makes perfect sense that patients are best supported when their networks are also nurtured and cared for. Examples in the literature show that even highly educated patients and their close support crew find the labyrinth structure of concrete bunkers, darkness and constant air-conditioning alienating.3

Frank Sinatra sings ‘regrets, I've had a few’ and I know that he was not talking about breast cancer but nevertheless I can relate. One thing I regret, or wish I had handled differently, is that my husband and I decided we would not tell our boys, then aged 5 and 8, that I had cancer. We both felt that they would not understand that many people live through a cancer diagnosis and I was worried about what stories other children at school would tell my own. Panic stricken that someone would say the word ‘cancer’ in front of them, I was consumed by the idea that they would be frightened for me or that I would have to explain that I was very sick and to this day, it brings tears to my eyes. It is impossible to tell a 5-year old that your cancer here and now might result in your death 5 years in the future. I found it difficult to estimate the emotional impact upon them when it became very obvious that I had lost my hair and part of my breast, and I was ill-equipped to deal with their emotions.

My solution was to protect them from all information and I now know that emotional over-protectiveness is a feature of parents with cancer.4 An invited child at my son's eighth birthday party teased him about my bald head in front of all our guests right in the middle of the ‘Happy Birthday’ cake and candle ritual. I quietly announced that I was a Ninja Mother and if he continued to make my child feel uneasy, then I would kick his butt Kung Fu style. Humour (Plan A) was the only way to deal with this situation as the alternative was to cry (Plan B). My Plan C was to tell the offending child I was morphing into Lady Smurf courtesy of the blue dye left in my breast tissue from the lymph gland localisation but thankfully I did not have to stoop that low.

What my children did understand was that the medication was so strong that I lost my hair, that the medicine was so strong that I needed a special ‘line’ into my skin so I could receive it and that I had lumps in my body that were making me sick. But my refusal to admit to them that I had cancer meant I could not take them to any medical appointment with me. I could not have them with me when visiting the Cancer Care Centre and thus I was forever asking favours of my family and friends to assist with child care. After all, my 8-year old could read very well and he would want to know what ‘cancer care’ meant! What reaffirmed my decision even more was that initially I was allocated a breast care nurse through the McGrath Foundation. She helpfully bestowed some reading material on me after my first surgery about the ‘journey’ and examples of explaining a cancer diagnosis to children. But the stories were all about parents telling their children of their terminal illness, of how to say goodbye.

The need for provisions of educational age-appropriate cancer information, especially for younger children, cannot be overemphasised. A 2006 study4 of young mothers with breast cancer and their children revealed both groups had substantially varying opinions of each other's understanding of the disease and coping mechanisms. Children very closely linked cancer with death and this caused extreme stress to mothers and fathers. Without wanting to be poster girl for mothers with cancer, I hope that in future more resources will be available to help parents talk about cancer with their young ones without dramatics and sad endings but perhaps with a little humour and sprite. Mothers with cancer need something to dry our tears, not add to them.

One thing that struck me when people referred to my apparent bravery through treatment was that I was a Survivor. I was, and continue to be, very uncomfortable with the word. As explained to me by my medical oncologist, I have an approximately 20% chance of having my cancer return inside 5 years. These are my odds and I could not alter them for the positive even if I dutifully participated in all the known therapies (which of course I did). I know that a secondary cancer will lead to a third and a fourth. Having lost a dear friend to breast cancer in 2012 (she was at 37 years old at the time), I am often tearful at the thought of not surviving and leaving behind my children. My friend fought with the strength of a thousand women, with the ferocity of a mother leaving behind her only child but still she did not survive. She deserved to but did not, as many other breast cancer patients will not also. I cannot bring myself to use the term Survivor in case I also do not. What a fickle thing fate is to proclaim you have beaten something that you have in fact succumbed to 2 years down the track and it is a chicken that will not be counted by me until it hatches. ‘Survivor’ is a badge of bravery many women wear proudly and I applaud their strength and celebration of their experiences but it is not a tag for everyone. For me, it somehow reduces the dignity of those that fought and did not survive.

Additionally I do not like the word ‘consumer’. Consumer implies I had a choice: ‘would madam like the breast cancer or the lymphoma today?’ It sounds ridiculous to me as a past patient that there were favourable choices. I was prescribed a standard therapy as the best and only option for my cancer type and life situation. Essentially I did not consume the breast cancer services but rather complied with them and it soothes me to think I accessed them in a time of need and in return I received care in time of illness. I often joke to my radiography students that I am a walking MRS patient, having undergone mammograms, ultrasounds, core biopsies, a nuclear medicine bone scan, a sentinel node scan, a computed tomography (CT) scan of my brain, thorax and abdomen, an echocardiogram, a CT radiation therapy staging scan and a fluoroscopic insertion of a peripherally inserted central line all within 3 months. I started May 2012 never having had a contrast injection in my life to now knowing ‘exactly’ how it feels as the contrast rushes through your vascular system and into your pelvis culminating in the dreadful feeling that you have wet yourself. But given a choice, I would never consume a therapy if not needed; not take a journey through cancer not required.

In reality, there are very few choices for cancer patients in the western-scientific model of health care within which I live and work. Indeed many patients, myself included, may not have coped with making many choices even if there were any, despite my book telling me that cancer was a personal journey of different directions, outcomes and considerations. I prefer the word ‘voices’. It makes cancer patients and carers feel empowered by their input. It gives the vibe of being inclusive, of expressing a perspective that is often overlooked and that voices together can be collaborative as cancer care should be. Through this article, my voice as a breast cancer patient, registered diagnostic radiographer, MRS academic, mother and wife has been heard and for that I am grateful. I hope that many more cancer patients find their voices, small or loud, publicly or privately to express how their journey is and was. MRS practitioners will learn so much from understanding their patient's needs, fears, wishes and questions. My work as an MRS academic is more informed for having navigated this journey; a not so insignificant legacy for my students and the future radiography workforce.

Fast forward to August 2014 while driving in the car and listening to a radio interview about breast cancer awareness, my now 8-year-old younger son asked if I had had cancer. He relates the news story to my own symptoms and appearances from 2011. Were those lumps I had 3 years ago ‘cancer’ he wanted to know. My husband and I looked at each other and immediately we knew it was time I had to face my fears and I quietly admitted YES to my children. I told them simply that I did have breast cancer and now I was well, with long hair that grew back just like I had said it would. I had survived the journey and voiced my experiences, including to my children this time.

In memory of Danielle Milinkovic

Conflict of Interest

The author declares no conflict of interest.