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.

The importance of Peer Support

Cancer patients have access to an unprecedented array of information sources, support networks and other resources to guide us through the very complex maze of medical procedures and treatments. We have access to medical specialists such as: medical and radiation oncologists; gastroenterologists and neurologists. Through the Cancer Centre, we can make use of the Ninon Bourque library; consult nutritionists, social workers, and pain specialists; and attend exercise classes. Soon we will have the Maplesoft Wellspring Centre that will provide a myriad of these services under one roof.

So where does the role of peer support fit in? Peer support can take many forms. It can come via one-on-one support either in person, over the phone or via the internet. It can take the form of regularly scheduled meetings or internet discussion groups. Regardless of format and venue, these various forms of peer support all have one thing in common; they bring together cancer patients and/or their caregivers with cancer survivors.

During the early days of my diagnosis, my family doctor provided me with contact information for the local Colorectal Cancer support group. I took the info and promptly filed it away along with the rest of the pamphlets and books I received from the hospital and the Canadian Cancer Society. I was never a big follower of support groups and I failed to see how this time would be any different.

So, what changed my mind?

When I was discharged from the hospital after my colon resection surgery, I was sent home with some basic aftercare information. After about a week of colon ‘non-performance’ and increasing discomfort, I was starting to worry that something was seriously wrong with my newly rearranged insides. I spent several days chasing down my surgeon and my gastroenterologist. Neither one was able to help me. I didn’t know where else to turn, so I dug up the phone number my doctor gave me and I called Sandra. Sandra heads the Ottawa chapter of the Colorectal Cancer support group. I think I spent well over an hour speaking with her that first time. Sandra asked a lot of questions in order to help figure out what my problems were, and while she had no magic solution to my problem, she assured me that what I was experiencing was normal and gave me a few things to try. She invited me to attend the next meeting at which I could have the benefit of speaking to others with similar experiences. I braved the minus 30 temperature that January evening and attended my first meeting. That was two years ago, and I’ve missed only a few meetings since.

So what does peer support provide that doctors or family cannot?

Peer support may well be the only venue a cancer patient has whereby s/he can be totally free to express his or her feelings. Cancer patients often feel that they must put on a brave face and be positive in front of family and friends. Topics such as bowel performance, hospice, palliative care and death are often taboo in a family setting.
Doctors and nurses with their heavy case-loads do not have the luxury of spending much time with each patient. Unless they have also gone through the cancer experience themselves, they may not always have the answers to certain questions or concerns.
By virtue of bringing together survivors and patients, there can be an exchange of ideas and information based on those personal experiences that are unique to those living with cancer, and that is a good thing!

All I want for Christmas………..

The other day I read a post on a friend’s Facebook Page wall that said, “Most people have a thousand wishes for Christmas, but a Cancer Patient only has one; to get better”.

I don’t know where my friend found this quote and I have been looking for its source ever since to provide proper references and much thanks to its author for this meaningful phrase.
Christmas can be a very trying time for both those battling the disease and their caregivers.
To begin with, Ottawa is a cold city during the winter and for those who are actively on chemotherapy treatments that include some of the platinum-based chemo cocktails (ie: oxaliplatin, cisplatin) venturing outside can be excruciatingly painful. In fact, even putting a hand in the refrigerator, let alone the freezer, can bring on tears! I experienced this first hand when I went through several cycles of FolFox (which includes oxaliplatin) during the winter months and I will never forget the searing pain which assaulted my face, especially my eyes, when I tried going outside even for a few moments.
Beside the physical pain that treatments can inflict upon the body; be it from the cold, the nausea, the lack of appetite, the odd taste of food, as well as the never-ending fatigue, there is also the emotional burden many cancer patients will experience.
Christmas is supposed to be a time of love, laughter, family get-togethers and most of all, a time of hope and renewal. As a cancer patient, it can be quite daunting to get into this Christmas spirit when you not only feel like crap, but look like crap, and ‘hope’ becomes just a four letter word. Family members who think they are helping the cancer patient with their constant words of encouragement and positive platitudes are in many cases not. In fact, they may be adding another layer of burden onto the patient who often feels guilty that s/he can not put on a happy and/or brave face for the sake of the family when this may be the last thing they feel like doing. Sometimes, but especially during the Christmas holiday season, cancer patients just need to be able to express how they feel without others judging them and without hearing that annoying, ‘everything’s going to be all-right dear’.

So, if any of you have family or close friends who are fighting the good fight this Christmas season, the best gift you can give them is the gift of listening, being there for them, and most of all, refraining from telling them not to worry because everything’s going to be all-right dear’.

Importance of Self-Advocacy

Through my involvement with support groups and by the virtue of being a cancer patient/survivor, I get to talk to a lot of people about cancer.

Given we are living in the 21st century and experiencing the highest levels of education and information availability in human history, it is surprising that so many people are taking what I consider a laisssez-faire attitude  towards their, or their loved ones’ disease and treatment.  I sometimes wonder if such an attitude is borne out of sheer fear; the “head in the sand, what we don’t know won’t hurt us” mentality. If this is the case, the irony of the matter would be that the fear of the unknown just adds to the stress and anxiety. 

I’m not suggesting that one should sit in front of a computer all day using “Google” to search out survival statistics, a truly depressing pastime! What I am suggesting is that patients and caregivers take control of their disease and not have the disease control them. 

When I was first diagnosed, I knew absolutely nothing about colon cancer.  In fact, I really didn’t know much about that part of my anatomy at all.  I felt as if I was thrown into another universe; a universe full of words and jargon I have never heard before let alone understand. Two years ago words such as: sphigmoid, ileus, lymph node, vascular involvement, carcinoembryonic antigen, and neutraphils were just not in my vocabulary! As a result, I made it my pet project to learn as much as I could, not because I wanted to upstage my doctor(s), but I truly wanted to understand my disease and its treatment. I also did not want the doctors to feel obliged to ‘talk down’ to me like I was an ignorant child.  I wanted to let the medical team know that not only was I going to be actively involved in my treatment, I was going to be the one making the decisions. It is my life after all: I have ownership, I have the responsibility.  And you know what?  The doctors were not only okay with that approach; they seemed relieved to be dealing with an informed, consenting adult.

Given today’s medical system pressures, I think it’s unrealistic for patients to delegate all matters concerning their health and well-being to their doctors.  Doctors have enough on their plate because of a demanding case load without having to hold each patient’s hand and guide them through the cancer journey.

 

While they are important players in the cancer fighting team, no one doctor is the captain, the patient is. It is up to the patient to formulate questions and have them ready for the appointment, making the often short visits with the doctor that much more productive. At the same time people should not be put off when the doctor answers some of the questions with, ‘We don’t know’.  He or she does not have a crystal ball; there are still too many unknowns with the disease and its treatments.

Here are some handy tips I have put together based on my own experience:

-         Obtain copies of your medical procedures; ie: surgical report, pathology report, CT/MRI reports, blood work, etc. Your medical records contain lots of important details that your doctor may not always have time to discuss with you. These are YOUR records and you have a right to them.

-         Formulate your questions ahead of your doctor’s visits.  Write them down if necessary.  Bring them with you to your appointments.

-         If at all possible, bring someone with you to your appointments.  This person can help you recall what was discussed and/or take notes.

-         If you don’t understand a particular medical term, look it up!  There are numerous medical dictionaries available on-line.  If you don’t have access to a computer, the Ottawa Cancer Centre has a library and fabulous research support waiting to help you!

-         Keep a diary/journal of your symptoms.  Sometimes treatments, especially chemo can cause ‘chemobrain’, and you won’t always remember to mention things at your appointment.

-         Raise any side-effects or symptoms with your doctor. Many treatments and drugs can be modified and/or changed if you are not tolerating them well. If you are suffering incapacitating pain, ask the Cancer Centre or your doctor for a referral with the pain specialist.

-         Do not be scared or intimidated to ask for a 2^nd opinion if you are not comfortable with your doctor’s diagnosis or medical advice. A good doctor will welcome a peer’s opinion.