and plenty of them. Today I’m going to tell you about my melanoma notebook. Included in there are questions for the next doctor visit, notes to self if I am unsure of scheduling, need to make a phone call, have a financial question….and the list goes on. This same notebook has a basic history of my skin cancer journey. Mine is chronological, though I know others that have different notebooks for different parts of their cancer journey.
AND, my caregiver sometimes takes notes during our various visits. With my half-hearing, I can later refer to the notebook and read about what I missed or misunderstood. Having someone with you is critical to your whole health plan and I write about that in my post entitled Two Heads Are Better Than One. Give yourself credit! There is a lot going on; bring a support person and write things down!
Another use for my notebook is the actual physical process of writing. It’s not long or pretty, but jotting down what I hear when it is critical information helps to remove the thought from my head and let it rest on paper.
For example, when told that a CT scan shows spots on my lungs again…I don’t hear much else. I was then told by my head oncologist that “we are aware of these areas” but they are not of concern at this time. YIKES! That is a worry flag for me. My husband (and support person) suggests that I write what I hear in my notebook to get it somewhat out of my head. It works and I can refer back to this when it floats through my mind, feeling reassured by what I have written down.
Keeping track of medical expense is super useful. I do that in the back of my notebook. Last year, 2017, was insane medically. Knowing that medical mileage, tolls, etc were a tax deduction made a difference for us. After each visit, I note the date, mileage, and other medical deductions. For me, it’s best to do this as each medical event comes along…trying to reconstruct this at year end, is not a good idea. I struggle with fatigue and brain fog at times so tackling a bit of notebook housekeeping as I go along makes sense. Keep in mind, medical tax deductions are changing again for 2018.
Sticky Note (AKA Time to Get Out the Notebook Again)
Painful, searingly painful, when after 1.5 years hoping I was cancer free, to have to find my notebook. Reading over the first melanoma diagnosis, etc. brought back so much emotion that I didn’t anticipate! Once over my initial shock of needing “THE NOTEBOOK” again, I found it extremely useful, reminding me of certain events in the past. With a large team of doctors, this notebook is also a handy reference guide. Put a contact phone number in your notebook; you may not like that you are in need of a medical journal, but it is very valuable to you.
I NEVER thought I’d being needing a backpack to go to Dana Farber Cancer Institute, ever. Backpacks mean outdoor adventure, right? Wrong! My backpack is where I keep my notebook and pen(and other treasures I will write about another day). I refer to my notebook as needed and always before the next appointment. UGH, to the next appointment angst, but we know we can do this! What were positives and negatives about the last medical day? What tests were done? What was I feeling? Yes, I do note my okay-ness or my worries sometimes during appointment days.
Again, jotting down a few notes helps to take the strain off the brain! For the most part, when not at appointments, my medical notebook stays in my backpack, the keeper of tough thoughts, questions, and answers, heaps of answers. We’re quite familiar with each other, and there for each other when we need to be. You might say “a love/hate relationship”, that notebook and I!
So much learning going on in the cancer life, right? Whether a current cancer patient, in remission, a survivor, or a caregiver, we don’t have super powers! Hope, inspiration, and a few suggestions to make cancer patients life a bit easier. How do you handle the plethora of information that comes your way? #melanomatheskinwerein #melanoma #cancer #cancertips
We can-cer vive!