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. 

My Story

The pieces of a puzzle came together for me late in the month of October 2008 as I sat in the Queensway Carleton Hospital, still drugged from a just finished colonoscopy.  Two years of strange aches and pains, unexplained symptoms and inconclusive lab tests were finally diagnosed. I wasn’t a hypochondriac after all. My mystery ailment now had a name.  A word no one wants to hear from their doctor; ‘cancer’.

A whirlwind of activities soon followed. Within days I was booked for a CT scan and appointment with a surgeon who, again,  within days performed a sphigmoidoscopy to double check the location, size and I guess resectability of the tumour which by that time I knew to be located in the sigmo-rectal area.  Surgery was booked for the following week.  There were so many things to be scared of.  What if I didn’t make it through surgery? What if the surgeon found more tumours? What if I needed a colostomy? So many questions went through my mind at that time; questions that had no immediate answers. Even though I had the support of my entire family, I never felt so alone and scared as I did on that surgery day. It was only then, as I was being wheeled in to the O.R. that my surgeon informed me that the CT scans seemed clear of additional tumours.

Thanks to my wonderful surgeon, the surgery was uneventful.  While he warned me beforehand that I might end up with a temporary colostomy, a quick abdominal check proved that he was able to do the resection without the need for one. In addition, my scars were minimal, none of them visible in a bikini. My hospital stay was textbook, I weaned off the morphine very quickly (it made me nauseous!), I was walking every day, and even had solid food on my last day! My only scare occurred when blood tests showed dangerously low haemoglobin. I came very close to needing a transfusion, but in the end my body came through and my haemoglobin came back up on its own.

After the normal surgery recuperation period of about 8 weeks, I was referred to the Cancer Centre (General Hospital) for follow-up treatment.  Due to extensive lymph node involvement, adjuvant chemotherapy was recommended. Another whirlwind of activities ensued; appointments with oncologists, follow-up CT scans, MRI scans, chemo ‘training’ and PICC line insertion.  I was inundated with information from the hospital, the Canadian Cancer Society and from “Dr. Google”. I was determined but I was also very scared. I will never forget my first day at the infusion centre.  I felt like I was on death row. Seeing so many other very sick people all in the same room did not help. 

My biggest fear then, as it is now, is that the cancer will return. Unfortunately, too many cancer patients experience a recurrence. While I feel extremely fortunate to be alive and healthy two years later, I am also scared. Colorectal Cancer is a relentless, unpredictable disease.  It doesn’t follow rules and doesn’t care how healthy you are. With each passing day, I strive to live my life as fully as possible and not dwell on statistics. As other cancer survivors can attest, life is never the same again. While we live under the constant fear of the ‘other shoe falling’, we also feel as if we’ve been given a second chance at life. I know for myself, I have re-prioritized what is important to me and I don’t sweat the small stuff. I have re-learned to enjoy the small things: coffee in bed, a beautiful sunset, dinner with good friends, sharing a funny joke.  Every day I am alive is a gift.

“Four Women, Same Cancer, Four Journeys”

When most folks think of “Cancer” the most important aspect seems to be whether the patient survived or succumbed to the disease. They may also inquire about treatments; radiotherapy versus chemotherapy, or possibly some crazy new clinical trial. I must admit, until I went through my own crazy rollercoaster ride that is the cancer journey, I really didn’t pay all that much attention to what cancer patients actually experience during that ride.



A couple of weeks ago, I had the pleasure of spending a fun evening at a local pub with 3 incredible women. All four of us are in our 50’s, living in and around Ottawa and all four of us are colorectal cancer survivors. This is where the similarity ends. It was while I sat there sipping my designer beer, involved in multiple conversations around the table that I realized just how differently each of us experienced the same cancer.

There’s Lynn, diagnosed 5 years ago with Stage IV, our ‘senior survivor’ who has lived through a total blockage of her bowel followed by a liver and bowel resection (at the same time!). We are all jealous of how she breezed through treatment often bragging how she was able to drink wine while still on treatment. From my own chemo experience, the thought of drinking wine just made my stomach churn.

Then there is Trish, originally diagnosed at Stage II, endured chemo and radiation treatments which almost killed her, only to discover abdominal metastases months later. She was deemed incurable by local doctors only offering palliative systemic chemo. Trish, a bulldog of a fighter was not prepared to accept that diagnosis and as a result made it a full time job to read up on her condition. Her research identified HIPEC (Heated Intraperitoneal Chemo) as a possible course to follow. A lot of hard work to establish her qualification for this treatment with the collaboration of her local oncologist led to her subsequent admission for treatment out of province. While she is not out of the woods yet, and she is in much pain from the onslaught of treatments she has had to endure over the past two years, she is, at this moment cancer free.

Julie is the ‘newbie’ of this group. A stage III survivor, she has the added challenge of being a diabetic. I cannot imagine the amount of balancing that must have taken place in trying to deal with a lifelong chronic disease and cancer treatments at the same time. Julie hung in there and did her treatments like a pro, with an added ‘bonus’ of losing most of her gorgeous curly hair. (Complete hair loss is not usual for standard Colorectal Cancer chemo treatments). For colorectal patients the colonoscopy is part of our screening arsenal. While a safe and relatively simple procedure for most, it can be challenging for those who have undergone a surgical resection. This is because when a colon is resected following removal of the tumour and the damaged/diseased sections, it doesn’t always heal in a textbook manner. Adhesions, scar tissue, strictures and bowel looping are unfortunately quite common. This has become Julie’s latest battle; one that I hope I can help her with as unfortunately I have personal experience.