A POST-BREAST CANCER CHALLENGE: FINDING A SWIMSUIT

I was put on my first diet when I was nine years old, and, ever since, I have felt that bathing suits highlight everything that's wrong about my long-torsoed, generally plus-sized body. Then, when I lost a breast to cancer in 2006, finding a suit that fits went from frustrating to downright traumatic.

I have not had reconstruction and I need a suit that will work whether or not I wear a prosthetic breast form. I hate the damn thing, (you try walking around with a gummy, heavy, fake thing plastered to your chest wall), and wear it as little as possible. I cannot even imagine swimming with it, picturing myself emerging from the pool, prosthesis askew - I like to call it “boobs akimbo” - or worse, having the form fall out altogether. (I once heard a great story about an elderly lady losing her prosthesis in the pool and remarking, “Oh goodness! It's doing the breast stroke all by itself!”) At the very least, I think it would be uncomfortable.


The last time I needed a new suit, after my mastectomy in 2006, I ordered dozens of suits online, tried them all on and then returned all but two - one for swimming and a mastectomy suit for splashing around on the beach or sitting on a dock. This turned out to be in an expensive enterprise, so when I needed a new suit this year, I decided to be brave and face fitting room contortions - and the fitting room mirror.

I rejected suits that didn't cover my scars, that were two big, too small or both at the same time. I worked up a sweat trying to get tangled bathing suit straps over my shoulders, often resulting in a look that was reminiscent of a wrestling uniform. I cried a little bit. Regular suits left me feeling too exposed and mastectomy suits bagged on the chest when I was not wearing a breast form.

I eventually found success in a mastectomy boutique, settling on a tankini. The top is relatively flattering and covers everything that ought to be covered (including my post-pregnancy tummy.) I haven't been swimming with it yet and am fervently hoping that I won't end up with the top around my neck if I try to swim a couple of lengths.

I ended up buying two bottoms, one for swimming and a skirt that covers the cottage cheese that seems to have accumulated on my legs. If I stand up straight, suck in my stomach and glance quickly in the mirror, I actually look OK.

The whole thing was a fairly significant financial setback and the experience wasn't one I care to repeat any time soon. One bathing suit will have to be enough for me.

Why does this all have to be so hard? I know I need to work on accepting my body as it is, with all its lumps and bumps and missing bits but it would be nice if finding a suit that fits (and doesn't cost the earth) could be a reasonable goal for every woman.

AT THE CHEMOTHERAPY UNIT

Further to yesterday's post, I thought I would write about what you can expect when visiting the cancer centre for a chemotherapy or other systemic treatment. When I was starting out, I found the chemo orientation and the tour to be very helpful but there was a lot of information to digest. And I was feeling so overwhelmed that much of it was quickly forgotten.

Checking in:

Present your green hospital card at reception and your requisition form for blood work, if you have an appointment to do that before chemo.





Blood work:

It's worth digressing at this point to talk about blood work. You need to have blood work done in advance of every chemotherapy treatment – usually the day before or the day of treatment. You don't need an appointment to go to the lab, just your requisition.

However, I highly recommend getting a picc or a port. I had a portacath put in after my second treatment (it's a pretty simple and quick procedure) and I have no regrets. Chemotherapy can cause veins to become hard and small and blood draws can become painful, frustrating and traumatic. By my second treatment, finding a working vein was already a challenge. I think that my port makes everything much easier and am always happy to show mine to other patients.

The only downside to going the port or picc route is that you have to make an appointment through the chemotherapy unit to have your blood drawn by a nurse. It's worth calling as soon as you know when your chemo will be. Allow about two hours between bloodworm and chemo. I always try and do both appointments on the same day – have my blood work done, then go have a snack and come back for chemo.

Back at reception:

Once you have checked in, look at your watch. Then go sit down in the waiting area and get comfortable (this is where a good book, crossword puzzle or knitting come in handy). You can also go and check out the free hats and scarves in the alcove to the right of reception. Just be sure and keep an ear open so that you know when you are being called.

If more than twenty minutes elapse between when you check in and when you are called, it's worth checking in again with reception to make sure there are no delays. In almost five years of treatment, I have only had to wait more than twenty minutes a handful of times.

The receptionist, a volunteer (in the yellow jackets) or a nurse will let you know when it's your turn and send you to one of the “pods” - the numbered units arranged around the outside perimeter of the unit.

Treatment:

Your nurse will introduce herself, go over your info (name other id, to make sure that you get the right drugs!) and you will be settled in a bed or a chair (don't be shy about stating your preference).

There are lots of chairs around for guests. If you have someone with you, ask them to sit on the opposite side from the iv drip, so that the nurse will have easier access and your friend will be more comfortable.

The nurse will take your “vitals” (blood pressure and temperature), check over your blood work and hook you up to the iv unit). Your drugs will be ordered from the pharmacy and while you wait, the nurse will likely start a saline drip, to get you hydrated.

Speaking of hydrated, it's perfectly OK to go to the bathroom during treatment. You're being filled with a lot of liquid! Just unplug your unit from the wall (they have batteries for back up) and head over to one of the washrooms.

I always bring my own blanket to chemo but there are also lovely warm sheets available to patients. Ask the nurse for one if you get cold.

During treatment you can read, talk to your friend, listen to music, watch a DVD and even cruise the internet (ask at reception for the wifi password). Do what you need to pass the time comfortably.

Treatment can take anywhere from ten minutes to several hours. When you're done, the iv unit will beep and the nurse will come and unhook you. She will mostly likely take your vitals again before sending you on your way.

I know that sounds like a lot of information but it's actually all pretty straightforward and there are lots of people there to ask for help and to answer questions. It will be easier than you think.

THEY TAKE GOOD CARE OF YOU THERE.

I have a chemotherapy and Herceptin treatment tomorrow. And as always after a bit of a break, I'm very reluctant to go spend a day at the cancer centre and then come home feeling lousy.

But of course I'll go and with only a few complaints. After all, I'm alive because of these treatments – and pretty happy most of the time.

There are advantages to having been in chemo treatment for several years. I'm comfortable in the cancer centre and find it to be a bright and generally welcoming place (much less crowded and quieter than the old centre and well worth having endured the many long months of construction noise).

I know many of the staff now, too and I appreciate what a compassionate and skilled team of people work as admin staff, nurses, porters, cleaners, doctors and volunteers.

I have my routine. I bring my pink electric blanket (donated to the cancer centre and won in a raffle), my ipod, knitting, snacks and a water bottle. And I almost always bring a friend.

Sometimes, I see the groups of new patients going through the chemo room, taking the tour after their orientation session. So many look frightened as they face the unknown.

And I remember what it was to be in their shoes.

I try to make eye contact and smile reassuringly. What I want to do is give them a hug and say, “Don't worry. It won't be so bad. They'll take good care of you here.”

To follow Laurie please see her pesonal blog at http://notjustaboutcancer.blogspot.com/ and she is also the author of the book 'Not Done Yet:Living with Breast Cancer'

Allow me to introduce myself

My name is Laurie Kingston and this is my story.

I will never forget the moment when I discovered the lump in my breast, on December 2, 2005. It had been a long day, after a series of long days. I was feeling grumpy and a bit out of sorts as I went upstairs to get ready for bed. Then my hand brushed my breast and I felt what was, unmistakeably, a large, hard lump.

I ran downstairs to show my spouse, hoping hard that he would tell me he was sure it was nothing. He didn’t do that. Neither did the doctor I saw the next day. He referred me for a mammogram, which took place a few days later and was quickly followed by an ultrasound and a meeting with a radiologist who told me to “hope and pray for the best but prepare for the worst.”

The next few weeks remain a blur in my memory (except for the moment when I found a second lump under my arm) as I waited through the long weeks of the holidays. I was diagnosed with very aggressive breast cancer early in the new year. From that point on, things moved very quickly.

I had a mastectomy, followed by six rounds of gruelling chemotherapy and then twenty-five radiation treatments. A month after I completed treatment, I returned to work, only to discover a few weeks later that the cancer had spread to my liver.

My oncologist said that I had “more tumours than they could count” and, when pressed, told me that I had “years, not decades to live.” I re-entered the rollercoaster world of treatment and coped with infections and reactions to medication. Within a few months, I noticed that my symptoms had disappeared.

On June 30, 2007, I had my first clean scan – there was no longer any evidence of cancer. I have now been in remission for two years but I will likely remain in treatment for the rest of my life.

My relationship with the health care system is permanent, regular and intimate. And, for almost four years, I have been telling my very personal story quite publicly. I started a blog called Not Just About Cancer and quickly decided that it suited me best to write openly about my experiences and feelings as a breast cancer patient.

I’ve talked about sadness and joy, anger and frustration. About feeling invisible when a student radiation oncologist wrote on my chest without introducing himself. I wrote about the surgeon who said, “I can cure you” and my wonderful oncologist who said my results were “spectacular.” I related my experiences with hospital who couldn’t see beyond their own stress and of the many more who went out of their way to be kind. I composed my own list of “do’s and don’ts for medical professionals” and I shared my fear that I will die and my children will forget me. I wrote about the need for real universal access, patient dignity and the value and contributions of front line staff.

I started to blog as a way to keep friends and family informed (and as a communications professional, in part to put my own “spin” on the messages being relayed about my health) and as a way to process the flood of information and emotions in those early weeks of treatment. I would not have predicted how central the writing would come to my survival or how my blog could connect me to an active and vital online community.
I feel very honoured to have been asked by the Ottawa Regional Cancer Foundation to be a guest blogger this week. I look forward to sharing some of my stories as an ongoing cancer patient with you.

The above was excerpted from “Patient Personified” an essay I wrote for Women Who Care, published by Pottersfield Press in 2010 and edited by Dr. Nili Kaplan-Myrth.