Breast cancer is a diagnosis heard all too often these days at 13,000 diagnoses a year in Australia.
However, with our marvellous early detection programs and medical expertise, we allow ourselves to be propelled along a trajectory directed by others because we know there have been so many before us who have gone down that track towards a success result.
It begins with the diagnosis, then the referrals to breast surgeons, plastic surgeons, radiologist and oncologists the breast cancer and cancer councils. We are so lucky the women say...and we are until we experience something just a little different.
My story began with a bilateral mastectomy three years and two weeks ago. I had a reconstruction with expanders implanted at that time.
From the first post-operative awareness it was different. I thought that I had a constriction bandage around my chest but the surgeons assured me there was no such thing...it was the first presence of the "crush" pain.
My post-op recovery was uneventful except for my level of discomfort which began to intensify when I began my chemotherapy treatment. I asked my surgeons and my oncologist if this was normal and when it would subside and I was put through multiple tests including cardiac and respiratory, that would hopefully provide an answer. Everything came back as normal...but it wasn't!
There was nothing to identify the cause of my pain. It shouldn't be there!
The pain was exacerbated by every chemo treatment and it became so incapacitating that I could not walk to the bathroom without excruciating pain reverberating in my chest.
I tried so hard to push against this ever-increasing and disabling, relentless pain. I was prescribed opiates, codeine-laden pain killers, anti-inflammatory tablets, antibiotics with a host of other medications to address the side effects of those.
Each day was agony – breathing, moving, existing - BUT my cancer was removed. I was lucky - and still no-one could identify why I felt like I had barbed wire tightly wound around my chest, but I did.
Was I mad? My oncologist said "this is bizarre" and had no comfort to offer except that he did not have any other patients who complained of this type of pain.
One morning, six months after surgery and two months after I had finished the chemo sessions as I was lying in bed at home I heard Professor Michael Cousins from the Royal North Shore Hospital Pain Management Clinic interviewed on ABC radio.
He spoke of the impact of chronic pain and the cost to our society. I knew how true that was. Then he interviewed a lady who described her post breast surgery chest pain that exactly matched my own description. I was not mad! I was not the only one!
Following a call to the pain clinic, I was given an appointment to meet with Professor Cousins and so began "my return to life". His expertise, treatment regime, acceptance, support and guidance along with his integrated specialist health care team allowed me to have significant pain relief, to gradually increase my activity and within two months, to return to employment (albeit now only part-time).
"The Prof" greatly assisted my recovery from my second reconstructive operation 18 months ago by providing prophylactic, preventative pain treatment so as not to re-start the pain cycle again.
I owe "the Prof" nothing less than my life.
Due to the progress I have made, for the last 10 months I have been able to control the pain without medication. This I attribute to the excellent treatment by "The Prof" along with the assistance during the last year of an allied health treatment (by another master in his field) of Bowen and Emmett therapy given about every six weeks to decreases muscular tension and pain. I am so lucky!
I needed to be my own advocate and "the squeaky wheel that gets the oil" so that my cry could be heard above the drone of "that is bizarre"!
Women especially do suffer in silence and this has to stop even if one feels they are the lone voice.
I have so much gratitude for those who listened, those who have such a level of excellence in their field and those that support their loved ones in pain.