Due to the nature of tough disease states such a cancer, transplants, and chronic health situations, navigating treatment courses can be challenging. Upon diagnosis, there are so many new emotions that it can be hard for a patient to think clear enough to know what to do each step of the way. Doctors and nurses as well as the whole healthcare team do their best to explain details of the treatment plan but no one is perfect so some pieces of communication get forgotten. Before navigating the journey, patients do not know every detail of when to attend lab draws, scans, and even appointments.
Along the way, I learned that there are flaws in our medical system. Almost every part of the medical system is computerized which is good but many computer systems are not linked up between different offices and agencies causing patients to fall through the cracks at times. Also, insurance does not always want to pay for needed tests or treatments resulting in patients and healthcare workers needing to jump through hoops at times just to obtain the care required.
For instance, my doctor would see patients at a different part of the city from where I received my IV infusions. Due to this, there were times I was suppose to see my doctor for a followup meeting either in person or via telemedicine but was not showing up in the computer system as needing to make an appointment. I went the first 3 months of my IV treatment without seeing my doctor and was not told along the way that I was to meet with her once a month. At this point, I realized that I was going to need to advocate for myself to make sure to ask more questions about upcoming appointments and tests needed in monitoring my progress.
Many patients do not feel good while going through treatment due to being tired often which causes organization in appointments to not be a top priority. Some patients are elderly and may not remember the things that the doctor tells them. I remember friends explaining to me to have someone help me during my treatment process by bringing someone to my appointments who could hear everything that my doctor tells me just in case I forgot or just did not hear all of the things that my doctor would explain to me.
I also learned to have a sense of urgency with scheduling my MD appointments, labs, and scans. Due to my medical background, I decided to be the one who had to advocate for myself by making sure to ask about the next occurence at each appointment and treatment. I had to be organized in marking my calendar so that my husband could help me out by transporting me to and from infusion treatments. We have a shared calendar on our phones so that we can be sure to remember what each other has going on daily. Even before a diagnosis, there are so many tests and blood draws that I remember prioritizing the next place to be so that I was not just pushed off and forgotten about.
Recently, I have learned of several areas of help for patients as they navigate their journey. The Leukemia Lymphoma Society (LLS) has a program where someone will walk patients through each step of the process and make sure patients receive the help needed. Also, a few doctor offices and specialty pharmacies provide services to follow-up and make sure patients receive their medications, take them correctly, and monitor side effects. It is important for a patient to ask for help.
As a result of my diagnosis and treatment occurring during COVID restrictions from 2020-2022, I was not able to bring someone with me to most appointments. I am not sure how others with memory issues or bothersome side effects made it through those years to know the correct steps to take without an advocate helping them out when needed. After understanding the process and experiencing leukemia treatment, I have learned first hand the importance of an advocate and highly recommend that patients select someone to help during the process of their journey.
“And this commandment we have from Him, that the one who loves God should also (unselfishly) love his brother and seek the best for him.” 1 John 4:21
Good read Shauna. This is so true. If I wasn’t in the medical field I would be confused. Patients are easily confused on the process and it’s sad. A person needs someone to literally hold their hand during times like this because emotions alone take over everything. I make notes for my patients when I discharge them because for the most part I can tell it is information overload.
Thank you sweet friend! Hope you are doing well! I know your patients appreciate you!!