Cancer patients are told that they need to advocate for themselves. If you do not then you may potentially get lost in the system. Previously there were system navigators to help patients navigate the system. When you are going through this, it is not always clear what you are suppose to do at each step, nor are you really in the right state of mind to receive the information or can you always think clearly. I realized that during the meetings with the doctors I would fixate on certain things and not necessarily take in all of the information. During school I rarely took notes in class. I had friends who took notes for me in class, so it is not something that I did through University. I relied on my memory a lot instead. During calls with the doctors Mel and I would both take notes and then discuss the points afterwards. Things progressed fairly quickly in the first couple of weeks and friends who went through this previously mentioned that if you did not get follow up calls from the doctors then you needed to advocate for yourself. I was lucky and would get phone calls within a day or so. I am not sure if friends in the background were following up or not, but it was nice. I know of several occasions where people were looking out for me discretely.
What I learned from the experience is that even if you think you can handle things on your own, you may not know if you actually need the help or not going through it. It would be tough going through this alone. Having someone attend meetings and be your support helps a lot. During this whole ordeal she would phone doctors and nurses and schedule most of my appointments. I am not sure if I would have been able to do a lot of that on my own. It was a great help having someone you trust take care of all of that stuff for you. When there were instances where the treatments were not going well she would call the oncologists or the cancer center and talk to them about it. I am a bit foolish in the sense that I would just try and suck it up and deal with it. That is probably not the right mindset to take when you are on medication that has such a large impact on you. Thinking of people that have to go through this alone or without a support system I can not understand how it is difficult and it is something that I do not wish on anyone. If it was not Covid then the volunteers can help out a lot more than they currently can with the restrictions.
In the past I would deal with things on my own and not necessarily rely on people to help me out. Something that I am really bad at is advocating for myself. I tend to not think about myself and was brought up that you can always work harder to achieve what you want. Lack of success is not due to someone else, but because you internally may not have put all of the required effort in. It seems odd to reach out and ask for assistance, it is not something that I am accustomed to even though I have received a lot of help from people through my life. My thoughts were that there are probably people worse off than me that need more help than I do at the moment. So Melanie was fantastic and made sure that I received the care that I did. She has experience in the field so knew how slow some things were and how to talk to people. People seem to respond positively to her and she is capable navigating through the system. When you are weak at something it is important to have someone close to you that can help you out. I appreciate all of the help she provided advocating for me and managing my care, whether it was making appointments or driving me to them. She was awesome
Q