Was there ever a time when one could just be the patient and trust the doctor would take time to review their chart and make customized recommendations of treatment?
I was born three months premature, so I was a sick baby and little girl. I was always going to the doctor for tests, infections and surgeries. I have fond memories of my pediatrician Dr. Tift. He always wore a bowtie and had the best bedside manner. I trusted him.
Once I graduated from college and had to find my own doctors, I was still that trusting little girl at heart. I really had excellent doctors in LA and GA during my 20’s and early 30’s. I felt like a person. I had so many issues with my ovaries, uterus, cervix and painful periods. They knew I was at risk for those cancers. I had more vaginal ultrasound action than sexual partners!
All my gynecologists over the years truly made me feel like they were doing the heavy work and monitoring my health. I trusted them.
Fast forward to the three years before my breast cancer diagnosis. All that comfort and trust was diminished.
I remember being told by countless doctors – primary, endocrinologist and dermatologist – that I was overreacting and needed to reduce my stress level and exercise. I was so angry and wondered why they made me feel like it was my fault for gaining weight, hair changing texture and falling out and irritability. I’d never been an overweight person in my life until six months after my 34th birthday. The dermatologist said there nothing she could do about my hair falling out or give me a reason. All she said was I should invest in Rogaine and eat better.
I was beyond devastated, yet I kept pushing for answers because I knew in my gut that something was very off in my body. It’s only when those tiny green bruises appeared on my left leg that I was finally taken seriously.
Why wasn’t my word and other symptoms enough to warrant concern from the start?
Why did it have to get to the point of feeling miserable and lethargic to be taken seriously?
“Oh, let’s get her a blood test here and there to shut her up,” is the vibe I consistently felt during that time until I physically felt the mass in my left breast that August 30, 2015.
During active treatment for my breast cancer, I felt heard and heavily monitored. I felt like I was a person again and not just a number. I was a well-cared for patient.
Then I enter post-treatment and just feel thrown out into the sea with no life jacket. I’m now swimming with millions pushing and shoving to be heard.
I thought palliative care would be different. I started out feeling heard again regarding my chronic pain from fibromyalgia and neuropathy thanks to chemo and multiple surgeries. I felt comforted knowing I was wrapped in this extra level care. I naively thought the relationship with my palliative care doctor would be different.
Instead, I’m consistently dealing with managing my own health and presenting outside the box ideas to help manage my chronic pain.
Get ready for my rant…
Why am I paying the copays when I’m presenting research to my doctor about new treatments for my case?
Why do many of my doctors look shocked when I make a suggestion?
Why aren’t any of these doctors’ part of cancer support groups to read what other patients go through?
Why does the doctor always ask why I’m there even though I’ve stated it in the portal, filled out the stupid paperwork and told the intake nurse?
Why are they so quick to dismiss my ideas or when I’m experiencing a side effect?
Why are they recommending medications within the same family when I’ve already shown the first option didn’t work or was allergic?
Why am I having to beg for x-rays and scans and other procedures?
Why aren’t doctors staying up to date on the latest research?
Why are doctors using Google on their phones to look up medications and the side effects in front of me?
More importantly, why aren’t they listening to the patient?
I no longer trust that any of my doctors truly have my best interest at heart. They are being mandated by insurance companies to push certain drugs. They aren’t taking the time to review my chart before walking into the exam room.
I didn’t set out to be my own doctor. I no longer have the mental bandwidth to stay on top of it all but I must because none of them will.
When will these doctors stop trying to cookie cut my treatment? I’m a square Meg who can’t be pushed into a round hole.
Life On The Cancer Train 
I am so beyond frustrated with paying high copays with specialist that have no idea how to handle chronic pain for the survivors. Ive had to be my family’s own dr for decades doing the research and then the dr agrees and gets paid. My oncologist told me that no one that is doing well after cancer is going to join a support group and that its all the crazy ppl in there!!!🤦 my newest onc ran up my bills to close to an additional 1000 in just two months. On top of the almost 7k i still owe for chemo surgeries and port removal. My friends and family don’t even respond anymore when i complain of chronic pain. No one wants to hear it. Its at the very least a small comfort that im not crazy and not imagining this pain when other survivors describe it exactly. Then i feel guilty for complaining around lifers. Hugs to you meg. You are so courageous and put a speaker on all of our voices. Hoping for better days ahead.
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Oh hun!!!! I hate that any of us have to go through this. I hate it even more that we feel like we can’t talk about our chronic pain to others. I no longer even tell my mother about it. The mounting medical bills never seem to go away. Once one is paid, three more pop up! The fact there’s really no financial help post-cancer is outrageous to me. I wrote this piece earlier this week after thinking about how my visit with my palliative care doctor went. I’m just so tired of advocating for myself. Thank YOU for your kind words. Know you’re NOT alone. Reach out to me anytime. I mean that, fellow warrior.
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Hi Maggie,
I have Stage 4 TNMBC. Also had other cancers over the years. The first time I stopped trusting my gyno was when he told me to smoke pot because I was depressed! This was about 25 years ago.
Then all these years later,, my oncologist basically gave up on me . After asking what treatments there were for Leptomeningeal Carsinoma she basically said I was gonna die in 2 months so why bother. Got rid of her quick. Now my new onc is more positive a year later, but I still get the vibe that she gave up too. Thanks, Ilene
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I hate that you’ve experienced such coldness by your old onc. I’m truly hoping this new onc will not and has not given up on you. More importantly, you don’t give up on YOU! Gentle hugs
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I drive three hours each way because I trust my oncologist- he listens to me, executes on my recommendations, asks me questions about why I want to do or to try so and so. He runs interference on my behalf. In June of this year, I’d completed 6 months of taxol – which I was allergic to so before the drip of the poison came corticosteroids and 500 milligrams of IV Benadryl. All through my port – thank god for that thing or I’d look like a junkie. Anyway I said I was feeling worse on my week off than on my weeks on. I asked to evenly distribute the chemo over each week and bump it up a notch since I had little in the way of side effects and even with the added dose I still remained fairly side effect free (well except for the fact that I would have stopped breathing, turned blue, and died by asphyxiation without the Benadryl, ha ha.) I had two tumors that grew in my peritoneal area one blocking my duodenum and not allowing food to pass from my tummy to my small intestines and a 5 cm lesion on my liver. In June after an unbelievably rough winter and spring I finally asked him why, before each appointment, did he poke his head around the sliding door separating the back office from the exam rooms. He told me he hadn’t expected me to make it past February. I should be dead, for all intents and purposes, and he calls me his miracle kid (I’m 54…) I asked him what made me live as other patients would have died if they’d presented my problems and prognosis. He said it was my tenacity and my body’s ability to perform extreme healing. I said I think it’s partly that but partly the fact that he never took my hope away by telling me I was supposed to be dead. I think that’s why I trust him so very much. He’s helped me save my life three separate times – but note he did not do it alone. We did it together and that make as much of a difference as the meds themselves.
Keep driving that train.
With love from the cancer bus,’
Ilene
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Every word you’ve written is so True! The fight of it all beyond exhaustion. The doctors that didn’t believe you and family calling me a hypochondriac. It’s sickening as the pain continues every day due to horrible treatments. And we are told you are lucky to be a Alive by insensitive mouthed family and friends. The many times I wanted to back hand a person telling me how I feel. No clue as these individuals haven’t an idea the war of warriors that endure hideous cancer treatments and fight for pain control. The plastic surgeon heathen who promised all great things and give you back what cancer took away. It’s hideous. The plastic surgeon who left me to die knowing what was wrong all along. 18 months later a new doctor would reveal the hideous deeds. Warriors fight every day. A battle not many understand. Yet we are left to fend our own emotional thoughts and angst every day. No one truly listens any more. Cancer changed me yet I’m expected to be normal. What is normal? There is not anything normal after surviving treatments. If only I could slap the many who tell me they know how I feel. Yet never went through an obstacle that cannot be measured. This is not a journey. That word gives me the creeps. A journey is a vacation. This is war! We have good and bad days. We fight every day to feel better. Every day. Not sleeping at night. And we are supposed to be normal.
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