My double mastectomy surgery appears to have been ‘a success’ and as many of you know, I was sent on my merry way home just a few short hours after the surgery, drugs in hand for pain. (They don’t tell you that you probably won’t sleep or poop much if/when you take them though!). Needless to say I think I only took them for 2 days, as what I felt was more discomfort than actual pain – depending what I try to do though.
I’ve had my handy ‘ammo’ vest (post-surgical camisole) of protection to wear, which has two pockets for the drain pots (I dubbed them the hand grenades), while protecting the bandages and drain tubes. It has been truly awesome! When both ‘grenades’ were in, they clearly looked like clown shoes, lol!! Only one remains still and looking forward to its removal. The backs of my arms and armpits are somewhat numb still due to nerve damage, which I understand will dissipate over time. It has improved immensely already within 15 days. All bandages have now been removed :-), going about town as needed, accepting numerous visitors, eating well and trying my best to gain a couple of pounds back! There are still a few things I’ve been trying to figure out though, as I follow this new path of mine.
Approximately ten days post-surgery, I began inquiring as to whether I should be doing any stretching or exercises in order to increase movement. “Tell her to read the book!” my girlfriend (Director of Surgical Services at the hospital) said to my sister, Nurse Brenda, who quickly relayed the instruction via text message. “What book?” I searched all my stashes, piles and brown envelopes that I had received over the past month – nothing. I asked each VON nurse (Victoria Order of Nurses which supplies home care) who came to my home every other day to check drains, change/remove bandages, etc. She knew nothing about any particular exercises I should be doing yet. Hmmm. I searched online and found a few helpful ones.
Meanwhile, two girlfriends, who have gone before me on this path, had also shared info about a Look Good, Feel Better program – a two-hour presentation where they teach you how to manage your rapidly changing looks. I think I might need this too! Attendees learn how to use makeup to overcome missing eyebrows and eyelashes; how to manage hair loss and choose a wig or other head cover; how to care for dry skin and nails during treatments; how to avoid germs and bacteria while your immune system is hammered down; and finally, how to care for your teeth and potential mouth sores. Clearly I should try to attend this class prior to the time when I may be having to take a sick bag with me and in dire need this information. However, why had no one at the hospital mentioned this to me yet?
Lastly though, I found myself still awaiting contact from my Breast Navigator, as I truly was anxiously awaiting the time when this mystery person would appear, so that I could gain an understanding of what exactly their role would be in this new, breast-less life of mine. Two weeks later, still no Breast Navigator? Perhaps they would be introduced when I go in to begin treatments. I continued to ponder as to why no one had yet mentioned my Breast Navigator – not once.
Finally, feeling like I was somewhat in the dark after two full weeks, I decided to be proactive and called the Cancer Care Clinic (CCC) – the place that is supposed to be THE centre of it all. The CCC organizes your visits with your Oncologist, Radiation Oncologist, chemo and radiation visits, schedules necessary blood work and generally ensures your C file flows along the information highway without any major traffic jams. The CCC is located within the hospital and is the place you call when you have ANY questions as a fully-enrolled member of BC College. Surely, I hoped, they would know who will be: providing me with The Book; scheduling my attendance at the Look Good Feel Better Program; informing me of who my Breast Navigator is and approximately when they would be contacting me.
“Exercise Book?” they asked. “We depend on the surgeons providing those to patients. I can leave one in an envelope at the front desk for you to pick up.”
Great! Just have to get over there to get it now :-).
“The Look Good Feel Better Program? I’ll have someone call you about that”, they assured.
Finally the real biggie:“Breast Navigator”? they asked. “No. We don’t have one of those here, although we would like to and are working on it.”
Really? How sad, I thought :-(. All that mystery around someone who did not actually exist.
Yesterday morning, the VON came as scheduled. Low and behold she was an experienced VON and knew all the ropes. I told her how disappointed I was to hear that there were indeed, no Breast Navigators in Peterborough yet. However, she instantly replied “Yes there is … and here is her card! Go ahead, call her now!” And I did just that. The telephone number lead me to the switchboard operator at the hospital. “No, I’m sorry, we have no one here by that name”. “A Breast Navigator? No, I’m afraid we have no one listed here under that profession either”. I visually scanned the business card I had been handed and asked for the Breast Assessment Centre. Bingo! A friendly voice answered the phone and when I asked if she knew about a Breast Navigator, her musical reply was “yes, of course we have a Breast Navigator and she is right here – would you like to speak with her?” YES! Mystery solved – just a couple of weeks too late. I was told that most of her role took part from the initial diagnosis to preparing for surgery. Post-surgery wasn’t something she was very experienced with, but they are working on putting an envelope of information together for post-surgery. Ughh…really?
While the Breast Navigator has been there for approximately five years, she is clearly kept well-hidden within the Breast Assessment Centre. Only those who have specific doctors get referred to her. The doctors I’ve had thus far do not typically know about – or refer her services. Nurse Brenda, just happened to call me directly after this disheartening conversation, and I told her what I had learned. Kindred sister that she is, off she marched to find Ms. Breast Navigator and investigate. Armed with information, plenty of business cards and a lovely new stack of information for me to read, Nurse Brenda promptly arranged a meeting with her manager to spread the news of the ‘newly discovered’ Breast Navigator amongst their ranks at PRHC. Mission accomplished! Those BC members who follow my path will hopefully not have to piece the puzzle together on their own. I now have The Book in hand, a scheduled session with the Look Good Feel Better Program, and a Breast Navigator for any further questions! Happy girl :-).