Who am I?
I am 42 years old and I live with my partner and cat in Wellington. I was diagnosed with DCIS (later found to be invasive Stage II breast cancer) in April 2011. As I look back on the last few months, which have included a mastectomy and TRAM reconstruction, and an axillary node dissection, I would like to share a few of the learnings I have about being diagnosed, treated, and recovering from breast cancer.
I enjoy reading, exercising in moderation, and more than an occasional glass of sauvignon blanc with good friends.
What did I learn?
Diagnosis comes in stages. Early after the mammogram and the ultrasound, I was told I had DCIS. But more testing, such as a core biopsy, were required. After that, the results of the pathology from the mastectomy also determined the stage of the cancer. So, while you get told you have breast cancer, the stage, prognosis, and treatment options might come later.
Take it all in as it comes and don’t try to pre-empt what the doctors might say. Sure, I read information online waiting for my test results, and sure, I clicked on some YouTube videos of TRAM surgery that I probably would not advise doing, but my best advice is really to take one stage of the diagnosis at a time. The doctors really can’t tell you what you personally will need in terms of treatment until they have more information. It’s good to be informed about breast cancer treatment options and prognosis, but don’t apply them to your own situation until you know what you personally are up against.
Apart from opening a bottle of aforementioned sauvignon blanc at regular intervals, three things helped:
- Talking about it
- The Cancer Society
Talking about it. Not everyone will benefit from talking about it, but I found it helpful to tell people at work and friends and family and to discuss how I was feeling. Not everyone gets it, that’s OK – but the people who do, and who are there for you, are worth their weight in gold.
The Cancer Society. What a resource! Lovely people, a great library, help via telephone and in person, and sensitive and supportive staff. They really helped by listening and talking through medical options at a general level. And, because they are nurses they have that lovely manner combined with real clinical knowledge. They have a great service where breast cancer veterans can talk to newbies about their experiences. I think this is called Cancer Connect NZ. Talking to women who had been through it all helped me work through the hardest decision I had to make – which reconstructions option (if any) did I want? Use the Cancer Society when you need them, and donate generously once you’re through the woods.
Work. Two aspects of work helped. Firstly, taking my mind off ‘it’ and focusing on something else for five minutes. And secondly, being supportive with time off, appointments, replacing me while I had surgery, flowers and HR support. Having a good employer and a sympathetic workplace was valuable and I realised how much people do care. The financial support during this time was such a relief, as I found this a very stressful aspect of being diagnosed.
What’s different about my life now?
My attitude to life – in that I am grateful every day for what I have. I acknowledge this and look around me with love at my partner, my cat, my work (OK, not all the time), my relatively OK body, and my friends who supported me through the crisis and out the other side. I care about my family more and work stress less. I know I can hack the rough times, and I know that it’s really important to celebrate the good.
My body – Yes, things are different: not a lot worse, certainly not better, but different. It takes a bit of getting used to having a new breast and lots of scars. It takes a bit of getting used to making sure I take care of my arm and look after my scars. It’s weird at the gym in the changing room but who is looking anyway? Most of the time I feel relatively normal and I get on with life. When I do remember, I remember the hard times and the way my body used to be and I acknowledge this loss.
What would I say to someone going through breast cancer now?
It sucks but whatever happens you will get through it. It seems like the end of the world when you are diagnosed, and you find it hard to believe and difficult to think about the full implications. I hated people telling me that I would be OK, when what the hell do they know? Do it your way, don’t worry what people think, prioritise yourself and your health, and make sure to have time out from having cancer if you can.
I read lots and lots of books but I do recommend Dr Susan Love’s Breast Book. It’s a brick and it’s written from a medical perspective, but in plain, easy to understand language. It really helped get my head around some statistics and clinical concepts that were hard to grasp.