After being diagnosed with late-stage cancer, I learned many lessons, including the fact that I had to be my own best advocate.
I don’t think anyone expects to learn the things a cancer diagnosis brings. I learned many, from the ways you deal with stress and anger, to the way your heartbeat echoes throughout your body when you wake with the terror that this is actually happening to youand it wasn’t all a bad dream.
I’ve learned your body can deteriorate in ways that take your breath away, but it can also heal things that are impossibly broken.These miraculous bodies we so often taken for granted are doing a million things a minute. We just expect them to do it all, and too often we turn on them, our true best friends, when an error occurs.
I learned everything I could about mutations and cell structure and proteins and T cells and far more about what cancer actually IS. I learned that I must know cancer, my enemy, to fight it, so I studied until I could see its face. I knew nothing the day I was diagnosed. Now I know too much about how a cell becomes cancer, and why.
Once I understood that, I stopped taking cancer personally. Cancer wants to live and grow and spread. It does not think — it only acts and reacts. It needs me to survive.I do not need it. So, I turned it around. I had been challenged to a duel for my life by a most capable foe. I learned I can fight it as I would any bully trying to take from me. I would not just roll over. I would not just lie down and die because it wanted me to. I learned I am neither brave nor courageous, but I am stubborn. I will not back down. I will not lose a bet.I will fight for what is mine.
I learned that a doctor is just a person who studied medicine instead of plumbing or accounting. An oncologist studied cancer instead of feet or stomachs. Some doctors love medicine, some love people and some just love puzzles, but some no longer do. Some no longer remember why they are there. I’ve seen them get tired, battling others demons day after year and suffering innumerable losses. I think they don’t swing for the fences with every single patient, but I think they should. People will often surprise you when given a chance.
I learned that nurses are the glue and the sanity that holds medical practice (oncology in particular) together. Without them, we are sunk. Oncology nurses are those heroes who hold hands, who wet washcloths to suck on, who feed ice chips, tell stories and listen to yours, who can name your dog and ask if you have diarrhea and about your new haircut in the same breath. They are the ones who risk their hearts, I’ve learned.
Nurses aren’t there for the money, but for the patients.I would pay them the world. I’d equal their pay with their attending, because they do NEED more money. People talk a lot about soldiers risking their lives for this country, and I view nurses as the very same type of heroes. An end-stage patient with cancer is a bullet to the heart.
Cancer does not have feelings, so I learned to not care about it to become savage in my effort to kill it, to eschew proper etiquette and refuse to hold my tongue. It taught me to demand – what I wanted, what I needed and what I was owed by the medical system that took so much for payment but was much stingier about giving back. Like a dog with a bone, I fought them to save my life. I fought my doctors to make them save my life. I learned my father was correct – I pay THEM. I am not their charity case, their child or their annoyance. I am their boss.
I learned that it is immediately apparent who knows and understands cancer life, and who doesn’t; Empathy makes me feel loved and pity quite the opposite. Those whose lives cancer has enteredwould do anything to make my life better. They’d send lotions and socks and books and tempting foods and my beloved Winnie the Pooh collection en masse, and they would paint these gifts with their hearts and hope that this would be a win … that I could be a win. Instead of begrudging me for surviving when others haven’t, they would be my biggest cheerleaders. My adopted cancer family are the ones I work every day for to prove I was worth the investment.
For me, cancer blew in, destroyed everything in its path and then left.There was no reason for it, as there is no reason for much of the tragedy in life.
I learned to keep relearning patience with myself and to forgive myself for the battle scars. I’m trying to learn to forgive a system that let me down when I needed it most. I understand oncology has much to learn. The survival rates are quickly growing, but so are the crowds of people diagnosed.
I think it must be hard right now for clinicians, as much of what doctors learned in school about cancer treatment has changed. The past five years have changed everything. For some diseases, the past five months have brought practice-altering changes. Some day, we’ll likely find the past five days did, sothe biggest thing of all I learned is that you’d best study your cancer.Use the internet for the good it was created for. Study. Learn. Search.
No one is going to be a bigger or better advocate for your health than YOU. The days of doing a trust fall into a white coat might be over. You know you. No one will fight harder for your life than you.
I learned you can fight, and you can win, and have over a dozen doctors and three hospitals dumbstruck by that because they gave up. Don’t you ever, ever give up. Always keep learning.
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