Getting Organized: Learning to Manage Your Cancer Journey

 

IMG_0117When my gynecologist informed me that I had cancer almost three and half years ago the last thing on my mind was trying to manage the absolute chaos that my life had suddenly become. First, I was numb and in shock to learn that I had gynecological cancer at a fairly advanced stage. Once the dust had settled I found myself experiencing intense anger and fear, I was actually astonished to learn that emotions so strong existed. My life seemed to be spinning violently out of control and there appeared to be little I could do to stop this process or to regain a sense of stability. It was tempting to sit back and let things happen to me, and to believe that events were completely beyond my influence.

Despite my anxiety, I immediately realized that successful cancer treatment would require me to be an active participant, I would need to schedule and attend literally dozens of medical appointments. At the same time I would have to deal with the bureaucracy of the health-care system on an almost daily basis. Of course, I knew I could depend on family members to assist me when I was hospitalized or completely exhausted. But by and large I established that it was my cancer, my body and my complex journey to navigate.

Following my diagnosis I was often overwhelmed with the countless tasks that I was required to perform and with the hurried pace at which things were happening, but I’ve gradually devised my own system that enables me to be more organized. Over time I’ve learned to confront the practical life changes associated with cancer treatment, I’m now able to approach them with more efficiency and less hassle.

Keeping a Record of Your Treatment on Paper

 

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I strongly recommend keeping a personal record of your cancer treatment, including surgeries that are performed and any chemotherapy or radiotherapy that is administered. I have chosen to use a binder and I suggest the following other essential stationery supplies:

1. Page protectors (single page and multipage)
2. A hole punch
3. A stapler

I’ve used a combination of chronological order and straightforward categories to organize my documents. In case you’re wondering what needs to be in your cancer treatment diary, here is some of the key information that I’ve chosen to include in mine:

  • Basic documentation concerning my hospitalizations and surgeries
  • Complete pathology reports
  • A timetable of appointments, the specific drugs that I was given and other essential details regarding my chemotherapy
  • Physician progress notes summarizing my appointments at the Tom Baker Cancer Centre outpatient clinic

Using a Computer to Bring Your Journey Together

 

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Now that personal computers are firmly ingrained in our culture and nearly everyone is computer literate you’ll want to take advantage of this technology to make your cancer journey easier and more organized. As with traditional filing, you’ll require an organized system for letters, personal notes, essays and other word processing files. It’s best to create a classification system that makes sense to you and that allows you to locate files and documents quickly on your computer. Of course the Internet is invaluable for cancer patients wishing to learn more about their disease, but it’s essential to ascertain the difference between reliable or accredited sites and those that contain inaccurate, and sometimes even dangerous, information.

Some cancer patients have the advantage of accessing their official medical records online. Those of us being treated for cancer in Alberta unfortunately do not have access to these types of databases; my hope is that we might in the near future. I was excited to learn that there are plans to start an online portal this year that will give Albertan’s access to their prescriptions. Meanwhile, the intention is to add other medical information to the online system over time. In the interim I have to be content with requesting information from my medical records directly from the Tom Baker Centre and making sure each request is in writing. This can be a time consuming and tedious process, but it’s my judgment that the aggravation is worth it.

Ultimately the completeness or comprehensiveness of your medical information and the ease with which you can obtain medical records will vary depending on where in Canada you are receiving treatment. There is little doubt that receiving your cancer treatment in the United States or in a private health-care system may offer some advantages in terms of obtaining complete documentation. There is considerable bureaucracy and more overall effort involved by patients in the public system that I am a part of in Calgary, Alberta. We have to advocate a great deal for ourselves in terms of getting the information we need, and such pursuits can be difficult for a cancer patient when they are receiving chemotherapy or other active treatment. Personally I admit my medical appointments and diagnostic tests have slowed down substantially now that I’m in remission.

2 Comments

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2 responses to “Getting Organized: Learning to Manage Your Cancer Journey

  1. Carmel

    What stage was you ovarian cancer I thought I read stage 1c but then you say you were in advanced stage

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