over-researching...be aware of your sources!

Caregivers can easily develop bad habits when their loved one is sick. For some, its not eating healthy, for others its not getting enough sleep. For me, it was over-researching my mother's illness online. I was guilty of spending hours on the internet sifting through piles of information on lymphoma, chemo and transplants. There are a number of excellent websites that give reliable advice on how to cope with cancer, but there are just as many that provide incorrect and unreliable information. It turns out Wikipedia is one of those websites....go figure! Even though I would never use Wikipedia for my school work, I found myself browsing the site for information on chemotherapy. It sounds crazy (because it was!), but I was desperate for answers. I wanted to be able to predict the future, to understand what was happening to my mother and to find some piece of information that would make everything better. Though I had the best of intentions with my research, I only ended up causing problems for myself. There is a lot of doom and gloom online about cancer. For every happy story of survival, there seem to be a dozen about loss. You become overwhelmed by all the scary facts and figures and forget that each person's cancer is different. After looking up information online, I often found myself more anxious than enlightened.

The internet can be a great tool for finding information on cancer and treatment. There are forums where survivors and caregivers can go to share stories and experience. For the record, I did find some very helpful information online, although I did have to sift through a lot of garbage to get to it. The US National Institute of Health has some good advice for internet research: http://www.nlm.nih.gov/medlineplus/evaluatinghealthinformation.html.

Getting up close and personal with cancer had a lasting impact on me

Getting up close and personal with cancer had a lasting impact on me. I wanted to reach out and support those living with cancer and help give other families the happy ending that my family got. I had been involved with a few cancer fundraisers during high school, but I began to actively seek out new ways to get involved after my Mom was diagnosed. I had participated in a 12-hour overnight fundraiser run by the Canadian Cancer Society called Relay for Life in high school. After finding out that Carleton University did not have a Relay for Life, I emailed the Cancer Society to inquire about starting a Relay on campus. They told me that they had already been contacted by two students who had already begun the organization process. Over the last year, I joined a group of 30 devoted and enthusiastic Carleton students who joined together to create something amazing. Together, we organized Carleton University's first ever Relay for Life. We had almost 400 people register and we raised nearly 50 000$ in one night. The funds we raised will go to improving patient support and supporting research. Joining a group of such passionate and engaged young people was an experience that I will never forget.

Many survivors and caregivers just want to move on and never think about cancer again once they are done treatment. For me, joining the cancer community as a volunteer has been a very positive experience. It has allowed me to meet so many wonderful people who share the same passion for supporting those touched by cancer. The feeling of coming together to achieve a common goal has helped me to move on and embrace my new role as a former caregiver. I choose to volunteer because no patient, survivor or caregiver should ever feel alone. Whatever your reason, volunteering with organizations like the Ottawa Regional Cancer Foundation can be a very positive experience. My suggestion to those thinking of getting involved as a volunteer in the cancer community would be to try out different organizations and events until you find the right fit for you. Give it a try, you may be surprised by how much it inspires you!

Being a Youth Caregiver

My Mom was diagnosed with non-hodgkin's lymphoma in early winter of 2008. At that time, I was living in residence at Carleton University and finishing up my first semester. After exams, I went home for the holidays. We had a quiet, low-key Christmas that year. After the winter break, my life changed quite dramatically. Before my Mom got sick, I was your average university student, going to class, working a part time job and  having a great time with friends. I now had to learn how to balance school work and a personal life with chemo treatments, doctors appointments and visits to the hospital. For the first few weeks that my Mom was in the hospital I would sleep for 10 to 12 hours every night, yet still wake up tired. I felt constantly exhausted from the emotional strain of dealing with this new illness in the family. I wanted to be the best caregiver I could for my Mom. For me, that meant lots of visits to the hospital, hours of researching treatments and side effects and talking on the phone every day. Though I had a strong support network to take care of me and a wonderful family who never asked too much of me, I still felt the weight of all of my responsibilities. I put a lot of pressure on myself to be an excellent caregiver, a caring daughter, a strong student and a great friend.

Sometimes it can be lonely being a young adult caregiver. It feels like there aren't many people your age who understand exactly what you're going through. I looked for support groups for caregivers, but found nothing that met my needs. There were groups for the young children of parents with cancer, and groups for adults dealing with a spouse's illness, but nothing for those in-between. The 18-30 age group seems to often fall through the cracks. We are a group with unique needs. Many of us are trying to balance relationships, school and a new career with caring for a family member. Sometimes all you need is for someone to tell you that they understand how hard it is to study for exams during transplant prep. Or for someone to tell you that its ok to go out and have fun for a night with friends. Young caregivers give so much to their families and often find themselves over-worked and stressed. The cancer community needs to rally around these devoted young people and provide them with the support they need. Because when we support caregivers, we support survivorship.

Caring for my mom

In July my family will celebrate my mother's 1 year no-cancer-versary. As July quickly approaches, I find myself thinking back to the 9 months during my first year of university that I spent as a caregiver for my mother as she went through diagnosis and treatment for stage 4 Mantle Cell Lymphoma, a type of Non-Hodgkins Lymphoma.

When you think of a healthy, active person, you think of my mother. She ate well, exercised and took excellent care of herself. So it was quite a shock when we found out she had stage four cancer. My mother was diagnosed in early winter of 2008 and began treatment in January 2009. Over the next 8 months she went through multiple rounds of chemo and an autologous stem cell transplant. Chemo was difficult, as it meant lots of coming and going from the hospital, lots of blood transfusions and hospital stays. It can be very difficult to watch a loved one cope with an illness, but you do the best you can with what you've got. Sometimes that was spending long hours in the hospital together watching tv and chatting, other times it was making soup just the way she liked it and sometimes it was just sitting together in silence. I was lucky enough to have a wonderful family who worked as a team to care for my mother and a great support system that kept me going and made sure I was doing alright.

As a caregiver, it can be all to easy to let yourself fall by the way side. Between school, work and your family it can be easy to let yourself slide down the list of priorities. Sometimes your day is just so long that you can't stand the thought of going to the gym, even though you should, and you are just too tired to go out with friends, even though it would probably make you feel better. I was guilty of putting myself last on the list, to the point where I made myself sick from stress and fatigue. It was the wake up call I needed to start putting myself first. And you know what? After I made myself priority #1, I became a much better caregiver and a much happier person. Though my family is happy and healthy today, the lessons I learned during my mother's illness will stay with me forever.