Episode 5: Doctor's Visits

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It doesn’t matter how many times you go in for doctor’s visits, when your family member has cancer they never get easier. They just keep getting worse if you ask me. Just knowing that in a second’s time your life can be changed by the next sentence that comes out of an oncologists mouth is too much pressure.

We have been lucky to have a doctor who doesn’t have us wait too long in the actual exam room. However, when you are waiting to get scan results seconds seem like hours. So usually my husband gets a little antsy. He starts sighing, which is a normal way for him to try to release the intense amount of stress he has. He’ll also start fidgeting with something. 

We are both filled with anxiety and anticipation. I sit there and listen for the noise. You might not know the noise but it is footsteps that stop at the door, then the sound of the chart being pulled out of the document holder at the door and the knock. That’s when you know it has begun! The process has been started and as much as you would like to run out of the door with your fingers in your ears there is no turning back. This is what you are there for.

I’ve learned that a big portion of the responsibility I have taken on as a caregiver happens with the doctors. When my husband was diagnosed he took on the responsibility of staying alive and I took on the responsibility of advocating for him. I’ll be honest, I’ve been told I can be very persistent.

To tell you the truth any amount of control I could pretend to have of the situation was what got me through these experiences. I knew that I needed to understand what I had to ask in order to feel that nothing was overlooked. As if I had the expertise to do that. 

I very quickly realized that the doctors we were seeing had lived in this world of thyroid cancer for so long that they weren’t exactly able to explain everything to us in a way that we could fully understand. Since my first reaction to all of this was to understand everything that was said to us I had no problem asking for things to be explained again. Then I found out it also helped to restate how I was understanding the information to make sure I was getting it right. I may have been annoying but at that point I didn’t care. It was always in the interest of fully understanding what was going on, what test results actually meant and trying to wrap our heads around facts when looking forward and not fear. 

I also take a journal with me and write everything down. All the numbers and all the measurements of tumors scattered over pages so I could look back at it during the next visit to compare what had changed. As if the doctor wouldn’t have that in front of them already. 

We may have been lucky to have had two really good oncologists. They made and make us feel valued and stayed with us until we felt all of our questions had been answered. They did their best to make sure we understood what was going on and that we were adequately informed of the pros and cons of the next steps available to us. I learned that I should always ask if there is another option that they may not have presented because sometimes there are things that are new and in trials that may be an option in the future. Sometimes doctors seem to feel they know the patient and what they will lean towards and try to filter out all the extra. So asking if there are any other options is a good way to pull them out of that. 

One thing I learned quickly is not to allow myself to feel rushed. There is nothing worse than going in on a day where things are running late at the office and when you finally get in to see the team they feel they are in a rush because things are backed up. I don’t care if their day isn’t going well because the simple fact that we are there means our day isn’t going well either. So I don’t allow myself to feel rushed. It’s hard to do. You have so much respect for the expert that is sitting in front of you. However, these visits are important and I need to make sure that the human sitting in front of me is remembering everything they need to tell me. This is really life or death we are talking about so I make sure we are given the time we need to get though the information.

How you present yourself at the Drs visits are a choice you have to make as a a caregiver. I can’t say that the choice I made makes life easier for me, because it doesn’t. It would have been much better for my stress level to walk into appointments to simply be told what was going on and what was going to happen next. I just can’t do it that way. I have to know that I have done everything to the best of my ability to make sure that my husband is cared for as best as possible. I wanted to be able to be part of the team and play my role as advocate for my husband so that we were able to make informed decisions together. 

Just don’t ever feel you can’t ask a question or don’t deserve an answer that you understand.

 Sure that means I was trying to have control over a situation that I had no control over but we all have our ways of coping, don’t we?

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