Facing Cancer with Clarity
A one-stop resource for people who have just been told they have cancer, and for the people who love them.
Are you a new cancer patient?
If you, or someone you love, has just been given the devastating news of a cancer diagnosis, the next steps to take are not always clear and can leave you overwhelmed and confused. As a counselor and advocate for newly diagnosed adult cancer patients, I developed a free resource that outlines the steps you can take after your diagnosis and helps you to be more informed about your treatment options.
See below for this free resource, My Notebook, and gain focus and clarity about the first steps you and your family can take as you begin your cancer journey.
Prefer to watch short videos instead? The “Getting Control” section of My Notebook has been consolidated into 6 short videos you can watch here.
My Notebook: An Essential Resource for Recently Diagnosed Cancer Patients
Most newly diagnosed cancer patients were told at some point in the chaotic weeks after diagnosis that they should get a three-ring notebook binder to keep all the information they are juggling in one place, to help with the overwhelming and often impersonal medical maze faced by a newly diagnosed cancer patient. Well, most of the people I spoke to said that it was a great idea, but they were dealing with too much just then to take time to create their notebook. So, here it is, and each of you can personalize and customize it for your own use. Take what you need and leave the rest.
It offers only enough basics about cancer and treatment options to allow you to actively participate in determining what treatments are best for you. It has been shown that being fully engaged in the process of choosing the best treatment options improves your chances to beat this disease and return to a healthy normal life. This notebook helps you do this.
And it does more than that: It can minimize the stress of dealing with the day-to-day information overload and can lessen the frustrations of medical care delivery and endless insurance claim paper chases. In short, it helps allow you to focus on getting well.
My Notebook PDF Information
My Notebook is intended to be used by newly diagnosed adult cancer patients and their families. Its 3-ring binder format allows each family member to customize each section and/or tab for ease and convenience of use by the individual patient or family member, as they choose. An already-assembled hard copy weighs about 3 lbs. (If you would like to have a fully assembled copy, they can be made available through your primary care doctor’s office.) While it can be a portable resource, it is likely to often be too cumbersome to carry with you to all appointments and activities. Just lift out the section or tab you are using and leave the rest of the notebook at home.
This website has a PDF version of My Notebook, and in similar fashion, the users can customize the download to print only what they need now, or only what they want to see in a printed version. Each page of the first 3 sections of the printed version is formatted to have large blank margins for note taking. If you are not a note-taker, just read the sections (and refer back to them as needed) using the online version.
My Notebook has four sections:
1. Getting Control
This section has four steps to follow, in answer to a new patient’s most demanding question: What do I do now? It is a LOT of crucially important information to take in at a time when you and your family are reeling and not functioning at your best. So, I put together 6 short videos synopsizing this section. Click HERE to view and review these videos.
2. Getting the Facts
This is a quick cram course in cancer diseases and treatments. It is not specific to each cancer disease, but offers enough of an explanation for the patient to use so that he or she and a family member or loved one can better understand what the doctors are telling them.
3. Getting Treatment
This section has simplified information on standard vs. clinical trial treatments, aggressive vs. conservative treatments, and alternative or complementary treatments vs. conventional treatment. It serves to inform the discussion with the doctors, so that the patient can more fully participate in choosing the best treatment or treatments.
4. Getting Organized
This final section is a tool to organize and keep handy important information − physician and lab and treatment facility contacts, test results, insurance information, etc. − to make the medical paper chase less daunting and allow the patient and their family to deal with the most important goal of survivorship.
My Notebook differs from most other resources on the internet, in that it also supports the needs of the new patient’s family and loved ones. This is important, because “when someone gets cancer, everyone who loves them does, too.”