When Patient Becomes Caregiver

When I was admitted to the hospital in August 2007, I had a double mastectomy followed by a breast reconstruction in what turned out to be a ten and a half hour operation. I came out of surgery pretty banged up and needing more blood transfusions. My parents and husband were there when I was returned to my hospital room in the early evening.
Over the course of the week that I spent in the hospital, my mother was my principle caregiver. My sister, Susan; herself a nurse, spent much of the early hours with me as well, and my husband did the night shift. I don't know what I would have done without my mother that week, and during the six weeks of recovery she spent with me at home. The gratitude I felt, and still feel for my mother's generous and giving care never fades.
While I was in the hospital, I had a few visitors. One of them was someone named Joyce. I have called Joyce my “political” mother; if only to distinguish between my mom and her. The real truth, is that she has been a mother to me in the thirty years we have known one another; particularly in the past eighteen years, where she did all the “motherly” things like visit me in the hospital when I gave birth to my children, babysit my children, and she even had the upper hand of potty training my youngest daughter. With great success, I may add! Joyce celebrated my girls' accomplishments, went to school concerts (even when my daughter refused to sing) and was there to proudly see my two older daughters off to their high school prom. During the holidays, on the odd occasion when she and her husband, Gordon, were not visiting their own children and grandchildren in Ontario, she would celebrate with my family. There were many candles adorning birthday cakes that were blown out at our table. Many happy memories were made.
Every week, without fail we would have our weekly “caucus” meeting, where we would discuss what we were most passionate about; politics. In fact politics is how we met, when we were both “working” for provincial members of the Quebec National Assembly. I put working in quotations simply because Joyce was not paid, and volunteered her time. For almost four years of Joyce's stellar forty years of volunteering (full time, I may add) we would share an office. We were a force to be reckoned with. God help anyone who refused to renew their membership when Joyce would call. She was relentless and would not stop until she convinced them of our cause. Joyce also volunteered her time for me during the three federal elections in which I was a candidate.
It is now my turn to give selflessly, as Joyce's health took a turn for the worse this summer, and she has been hospitalized for the past six weeks. As fate would have it, I had the time to stay by her side, each day since the end of July, as I am between terms in my job. How perfectly those stars lined up! Spending all those hours at the hospital gave me much insight into the caring professions, and I was fortunate to became friends with many professionals that are certainly in the right line of work.
After spending the first week at the hospital in the emergency ward, Joyce was sent to a room. She would spend the next four weeks in that room where we would see several people come and go from the hospital bed next to her. One of them in particular, named Franca, was an angel to us, as she would always give us progress reports on the type of night Joyce had. Often, when Joyce was sleeping, I would talk to Franca and her sister-in-law about food, recipes and cooking. I'm sure you've guessed by now that Franca is Italian!
When Joyce was sent to a private room, I was somewhat melancholy, as I was not going to be able to chat with my new friend as much. The private room turned out to be a godsend for Joyce; however, being less busy and more peaceful for both the patient and the caregivers.
While in the hospital, I have watched the slow decline of my good friend's health. That sparkle that Joyce always had in her eye is slowly fading. My other mother is slowly dying. It has been a real emotional roller coaster ride this summer; one that I have been fortunate enough to be on. Being one of Joyce's caregivers was a gift and having the opportunity to be there for her; just as she has been there for me, is something I will always be grateful for.
Today Joyce is moving over to a palliative care centre. It's a beautiful place, and I know she will be happy to spend her final hours there. She will have the opportunity to see the outdoors again, and spend time with the ones that she loves. I will take this final trip with her, with gratitude and a heavy heart. Knowing that she has, and will be in good hands. And when I get home, I will try to pick up the pieces of my heart, and hope to put them back together.
I have come full circle, and have a newfound respect for my own mother, as I have now stepped in her caregiver shoes. It takes a lot of love, and this role is only for the special few.



Nine Years and Counting

Since 2007, my typical day on August third usually starts the same way.... I am grateful for being alive. This year I am grateful that I have had nine additional years, and counting, to see my three daughters grow and flourish and to spend with my family.

I think back on that day, as I was waiting outside the operating room, waiting to be ushered in to start what would turn out to be a ten and a half hour operation, involving two teams of surgeons. First my oncologist would remove both breasts; one of them full of cancer, and check my sentinel node for cancer cells. As some cells had spread to the sentinel node, he also removed twelve lymph nodes; the conduits through which cancer cells travel to other parts of the body. Once the oncology team was finished, the plastic surgeon took over with his team. He removed tissue from my stomach and pelvic area, reconstructed new breasts; included the intricate vascular system, and reconstructed my belly button.
I checked in to the recovery room in the early evening; having spent all day in the operating room and with both legs equipped with what resembled moon boots that expanded and contracted several times per minute to ensure that I would not develop dangerous blood clots. I also had two drains attached to my pelvic area, and two other drains on each side of my chest. I do not remember being in the recovery room at all. My first conscious recollection, since early morning, was being wheeled into my hot and muggy hospital room; a place I would call “home” for the following week.
That night, I would receive two additional units of blood, and countless injections of pain medication. I can only imagine what my family was going through.
I recovered well over the few days I spent in the hospital; thanks to the fact that I was in good physical shape. I even went for a five kilometre run the day I was admitted to the hospital, as I knew I wouldn't be running for quite some time.
The post operative care at the hospital was a different story. My room was small and illogically located on the maternity floor, was not air conditioned, dirty and had paint peeling off the walls. The nurses would pass by in the morning, and would not be seen again until the new nursing shift was about to start. My mother, who often spent the day at the hospital with me, had to track someone down if I needed help to go to the washroom or required action following my surgeon's prescription. My room was not washed, and the garbage only emptied if someone who was with me asked a hospital official to do it. So much for universal health care in Quebec. Part of the reason this happened was that my operation took place in the middle of the summer, when many regular nurses took vacation time and temporary agency nurses were brought in as back ups. More hospital beds are also closed during the summer months to accommodate holiday time. This should not be an excuse.
Thankfully time replaced my hospital stay with more positive memories and countless feelings of gratitude. This was also a turning point in my life. The time that drew the line in the sand for me between the before and after cancer. There were surgeries prior to this one, and many surgeries following this one. None of them can compare to the one I had on this day.
I was walking my dogs with my parents, who were visiting from out of town this past weekend. We were walking along the road near my house, and passed a gateway where I walked with my mother while I was recovering, and after my doctor permitted me to leave my house. She remembered this spot, as it was exactly half a kilometre from my house. I laughed, as I think of those moments each time I pass that area.
And so as I reflect on the state of things today, I am grateful that August 3, 2007 is getting further away from me. Four years ago, I had a party to celebrate five years cancer free, inviting sixty people, consisting of family, friends, neighbours and work colleagues. We had a wonderful time, and I'm sure glad I celebrated that way. Back then I thought of it as an important milestone to be celebrated. Now I realize it's a time where I become a statistic. A time that I am considered “cured”. I still think that these occasions, and any of them before or after are important dates to celebrate; even in a small way. On this day, I will celebrate with my family, and perhaps enjoy a glass, or two, of prosecco. And I will be grateful....always.

A Step Past Self Improvement

I was diagnosed with breast cancer back in Aril 2007; almost nine years ago. In the beginning all my energy was concentrated on organizing surgery, getting medical advice and learning about my new status in life. With events happening so quickly, and decisions that have to be made without the luxury of taking your time, I had a one track mind and tunnel vision. It was a real fight for survival.
The first few months after surgery were similar. Complications, lab results, being informed that there would be more surgery to come, and decisions about chemotherapy all cloud the mind with insistence and stress, and force you to concentrate with the moment and immediate future. There's no time to worry about the past or the future.
And then something happens. You suddenly have some breathing room and can catch your breath. Your mind starts to wander; asking that question you almost screamed in the beginning.....“Why me?!?!”...but looking at it more profoundly. There is no answer at this phase; although there are many suspicions, and if you have the least bit of intuition, you are probably able to as least partially answer your burning question.
Life will coast for awhile after this, and the pent up stress of the year of cancer treatments will take its toll. Fatigue settles in and forces you to rest and let your body recover. But if you're like me, more and more questions are asked and the mind increasingly wanders. At this time I took the opportunity to buy self help books, books of inspiration, and wellness books. Yes! The wellness community had started to pick up steam and was becoming more strong and vibrant. I had books on wellness, books on healthy eating and nutrition, books of affirmation and inspiration....and yes, I even authored an inspirational chapter about my cancer story in a collection by British journalist, Chris Geiger.
Don't get me wrong. All these books, and blogs are extremely helpful. They lift you up when you are at the lowest of your lows. They inspire you to get out of bed and put your clothes on; even when you are so weak, you don't even know you'll be able to stand up. They make you cry and blow off steam, and bring the light and positivity back into your life. They inform you that your lifestyle could have caused your cancer. Cancer was brought on by the food choices you made, or the alcohol you drank, the bad marriages you are in or the troubled childhood you had.
They also make you think.....and think.....and think. I believe I started thinking so much, he hole was getting deeper and deeper, and I was fast approaching wonderland. Sometimes you just have to get out of your head.
And this is the point of this blog. Although all the conclusions certain experts and bloggers come to are accurate and properly encourage you to understand your inner workings, and there are many people out there that are able to teach you, and inspire you to become a better runner or learn how to meditate, you need to take that step, and stop lingering in that cozy cocoon. That step out of your mind. That step to action.
It may be a scary prospect, but the answer is out there, and you can realign yourself towards better life choices.



Remembering Uncle Norm on World Cancer Day

It's World Cancer Day. It has also been awhile since I have written a blog. It hasn't necessarily been intentional. It a mix of the job I presently have that requires a fair amount of writing, and my explorations and continued evolution as a cancer survivor. 

I have been ironing out my authenticity. Attempting to quiet my mind, at some point in the day, so that I can tap into me. Learning to love myself, even though being a cancer survivor is a constant reminder of the inadequacies I used to have in the self love department. 

Going within is hard, but essential work. 

But today is a celebration of survivorship, and a day of remembrance for those who succumbed to this disease. It's a day of recognition for those who endeavour to raise funds for future research, as well as the researchers who are making inroads and inching nearer to a cure. It's also a day to recognize the thousands of survivours who participate in the variety of clinical trials that will enable the medical specialists to understand the state of this dis-ease.

It's heartwarming to see the advances we have made in treating not only the body with the symptoms, but the mind and the soul. Lifestyle, it turns out plays an important role, as does the state of our mind. 

I lost another family member to cancer last month.  It is to my Uncle Norm that I dedicate today's blog. Once he started radiation and chemotherapy therapies he lost his ability to swallow. Although he was told this was a temporary situation, he never regained the ability to swallow, and lived for the last nineteen months of his life with a feeding tube; unable to eat. As someone who loved good food and enjoyed a nice beer or a glass of wine, he did not lose his optimism or his sense of humour, and, although I'm sure he was frustrated from time to time, he never showed it. 

He left us way too soon. But in the face of adversity, the true personality of a hero comes out. And that hero lives on in each of us.  


Spring Cleaning

I remember a day when my pivot nurse, Dail Jacobs asked me to speak for the annual "Girls For a Cure" campaign back in October 2011. Back then I was a four year cancer survivor and I remember her saying that it was important to have a keynote speaker who had not just completed their treatment. At the time, I didn't see or maybe understand her reasoning. I felt that people just completing their treatment for cancer were very passionate about life and moving forward. They were on a "high" of having their body back in "ease". They succeeded at showing their families and loved ones that they could survive.

So as a keynote speaker at a few all-girl schools, my audiences were groups of high school aged girls between the ages of 12 and 17. I spoke about my experience with breast cancer; particularly as a mother with three daughters around the same ages as the girls in the audiences were. It was a really wonderful and rewarding experience, which leads me back to Dail's point.

Dail was right.

I wouldn't have realized it back then, but I do today. There are also stages of survivorship. There's the, at times, very emotional stage of just completing treatment, where passions run high and the thirst for life is supreme. It's as if the survivor get a super boost of steroids and has tons of adrenalin that provides them with lots of energy.

Soon after this initial stage the survivor settles in to a stage that is a little longer. For some, having chemotherapy meant losing your hair. In this case the peach fuzz appears and the regrowth begins. I have to say that was an exciting time for me, as to lose one's hair is one of the more difficult consequences of treatment.  During this time the survivor settles back into "normal" life, or what they perceive as normal life. In this phase I mourned the fact that I wasn't seeing my doctor all the time. Although I worked through my treatment, I wasn't as "busy" with medical appointments and related treatment. Family, friends and caregivers go back to their regular lives, and celebrate the fact that you're cured. I felt abandoned during this phase, as I wasn't getting as much attention as I was while going through treatment. Learning to lead a "normal" life again was an adjustment .

The next phase brings you back to reality. Most survivors have moved on with their lives and various activities. The memories of the dis-ease that invaded your body are further behind you, and, although you worry and fret before each semi annual check up with the oncologist, cancer becomes less of an occurrence in the daily thought process. As a cancer survivor, you are much more objective. This is the phase I was in when I was a keynote speaker for "Girls for a Cure". 

Of course there are periods of time where there are moments of panic scattered through your daily lives, as, for example, there are problems with some test results, or other tests needed by your oncologist or other specialist. Perhaps there are weeks of waiting on pins and needles for that result to be as "fine" as it can be. This is, after all, the new reality of any cancer survivor. It's something we will live with for the rest of our lives.

And while life goes on, there are also more phases of survivorship. Or at least the one I know now. As I was spring cleaning last week, during some time off of work, I was going through my books. I'm an avid reader, and I read about a wide range of topics. During my cancer treatments I read a variety of books about breast cancer, breast cancer treatments, healthy eating for cancer survivors. One of my favorite books was Kris Carr's "Crazy Sexy Cancer", which now looks extremely well read with many pages dog eared.

Anyways....while I was sorting through them and deciding which books I was going to pass on for others to enjoy, it suddenly dawned on me that all those cancer books, that I had been holding on to for dear life, were no longer needed. Just like that my decision was made.

My semi annual appointment is coming up in early April and I will but a pretty ribbon around those precious books and donate them to the oncology ward at the hospital where they will certainly help other patients.

I couldn't tell you how many other phases to survivorship there may be, but I think I will enjoy this one.