The Cancer Notebook

My most important notebook is this Rhodia pad:

In the middle of 2018 my mother was hospitalized and then diagnosed with a very serious, advanced, life threatening condition. Six months of constant battle, second, third and fourth opinions, and a lot of reading of medical papers later I managed to pull her out of the “you’re fat and that’s why you’re sick” sinkhole and to get the doctors’ full attention. She was re-diagnosed, this time with two, possibly three, types of cancer. In the end of 2018 my mother was taken off the transplant list and rushed into biological cancer treatment. She had an extremely rare condition, and her doctors didn’t know if the treatment would help. It ended up saving her life, but this is not what this post is about.

This post is about stationery. It contains no pretty templates, no flashy colours, no glitter pens. It’s just a few insights into small, pragmatic little things that I wish someone had told me when my life fell unexpectedly to pieces and I took on a new, additional, full time job: a seriously ill family member’s advocate.

September is childhood cancer awareness month(please donate to St. Jude here). Cancer is not something you plan for but statistically speaking its something that the large majority of us will have to deal with at some point or another. It’s also far from the only serious disease or condition a family member can fall ill to. Here are a few things that I wish I knew going in, stationery related things that would have saved me a lot of time and worry:

  • Get a large folder, larger than you think you’ll need. Find a permanent place for it in your house. If you don’t have a printer, get a printer. This is a must. Print out every test result, doctor’s summary letter, referral, application form, etc related to the disease. You need these in hardcopy (oftentimes more than one copy), as you’ll be bringing them into doctor consultations with you. These things may be digital now, but that’s not good enough. If you go get a second opinion, the doctor may not have access to the computing systems of your previous doctor. You may want to change health providers along the way, and you need to make sure that your new doctor has all the required information at hand. Put CDs with CT, MRI, US, and PET-CT results in that same folder. Make sure that you get a copy on CD of any imaging test you take.
  • Get a simple but good quality writing pad, and a ballpoint or gel ink pen to go with it. I use a staple bound Rhodia 16 pad, with a clip to keep it shut. It needs to be clearly marked as your “doctor notes” notebook. It needs to have a permanent place in your house, just like the folder. Why? Because you never know when you might have to rush to the hospital, and the last thing you need is to waste time searching for your folder and notebook lifeline. Because this notebook will become your lifeline.
  • The ruling on the notebook doesn’t matter, but I really recommend using a top bound notebook, and keeping it very simple and professional looking. You’re going to have enough of an uphill battle, let this notebook be a helpful tool, and not a distraction. I also recommend forgoing pocket style notebooks, or A4 sized notebooks. An A5 size (or equivalent) is best. Why? Because you’ll be using this in doctors’ offices and in hospital waiting rooms, not just while researching things in the comfort of your home. More often than not you’ll be balancing the notebook on your knees, sometimes while standing. You also want to have enough room to write, without being encumbered by a too large notebook. A5 means that you’ll likely devote a page for each doctor’s visit, so all the relevant information will be in front of you when you reference it later.
  • Use a ballpoint or a gel ink pen, don’t use a fountain pen. This is not the time nor place for that. I used the Ti Arto for most of my notes. Why? Because I easily wipe it clean with alcohol wipes after each visit to the hospital, because it’s dependable and not flashy, and because it doesn’t have a click mechanism, so I can’t fidget with it.
  • Take the notebook with you to every doctor’s visit, every exam, every consultation, every hospitalization. Take notes of EVERYTHING. What the doctor says, even to themselves or a colleague (write stuff down phonetically and ask for clarification about it later), what books they had on their shelves, how many kids they have and what their name is (part of your job as advocate is to remind the overworked doctor in front of you that your family member is a person. A good way to do that is to treat the doctor as one too.), what is the name of the secretaries, tips that you get from other patients (be extra nice in waiting rooms: there’s a mine of information around you), information about aid and support programs, names of other doctors, nurses that the best at taking blood tests, physical therapists that are extra patient and positive, etc. There will be times where doctors tell you that you don’t have to write everything down, they’ll write it in the summary letter for you. Smile kindly at them and continue to write. They’ll never write down everything that you will, trust me on this.
  • Refer back to this notebook when you’re at home. Use it to help with any research you’re doing (patient rights, finding support groups, finding other doctors to consult with, etc), to help you keep track of what was said when at which doctor’s office, and to generally keep you grounded. Also, if you didn’t have time to write everything down when you were in the doctor’s office, write down what you missed as soon as you get home.
  • Use it to vent. The back pages of my notebook are full of curses. That may or may not work for you, but it certainly helped me not lose my mind during the darkest hours of my mother’s ordeal.
  • Don’t forget digital tools. You’re going to need a spreadsheet to track the family member’s weight and crucial, disease indicating test results. Which results are important to track? It depends on the disease, and that’s what your notebook is for. As soon as possible get that information from the doctor, and write it down. Don’t trust them to do the day to day tracking for you – they have hundreds, sometimes thousands of other patients. Track whatever is crucial yourself, and raise flags with your doctor when things change.
  • Don’t forget to share the information in your notebook with others (if your family member approves, of course).
The Cancer Notebook

3 thoughts on “The Cancer Notebook

  1. Diane says:

    I’m sorry you and your mom had to go through this. As an oncology nurse, I also recommend keeping a notebook! Your ideas are excellent and practical. May I add that the notebook is also an excellent place to track symptoms at home so you can see if there is a pattern and also just to know how often something is occurring. The notebook is also a great place to write questions for the doctors. So many people have questions that they forget when they actually see the doctor just because so much is happening in that moment. It really helps to have them written down as they occur to you. Finally, notebooks are great for tracking the daunting number of medications that some people have to take at home. A written medication list of current meds is very helpful too, as what the electronic medical record thinks the patient is taking is often not accurate and it’s hard to remember all the medication names and dosages. I hope your mom is doing better now. Take care.

    Liked by 1 person

  2. James Eichholz says:

    Great advice. I actually did almost everything you said above when I co-supported by mom through cancer treatments a few years ago (minus not using fountain pens!) It is all very helpful through a long-term treatment course.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s