"Advocating" (4)

As a teacher, I encouraged my students to ask questions. I emphasized the trite but true phrase, “There’s no such thing as a dumb question.” As patients, we especially need to ask questions about every facet of our medical care affecting our body and our life.  Inquiring after our health and the procedures recommended for us does not mean we doubt the medical staff’s decisions. We simply need to understand and be comfortable with protocols. This is true in many settings. In fact, I chose my dentist for the very reason that she calmly describes what she is doing to my teeth and what sensations I will experience, step by step. It is relaxing to know what to anticipate, especially when procedures are basically out of your control.

Of course questions will vary widely depending upon your type of cancer and treatment. However, some general suggestions on topics you will want to cover with your doctor follow.

1)      Why did you choose this protocol—what are its advantages?

2)      Are there other protocols which would achieve the same results with fewer side effects?

3)     Are there any other drugs which could have the same effect, but cost less?

4)    Do I qualify for free (compassionate) chemotherapy drugs by the drug company?

4)     What surgical choices do I have? Is there a less invasive surgery option?

5)    What are the risks and benefits of each drug, procedure or surgery recommended?

6)      How do I prepare for treatment? Do you give me a handout on expectations?

7)      What things can I do to relieve problems (side effects, pain, etc.)?

8)      Do you give written directions for post-op care?

9)      How soon may I resume specific activities (such as driving, exercise, etc.)?

10)   What resources are available to me (such as support groups, financial help or transportation)?

11)   Can you provide a social worker or community liaison who will be able to assist me?

12)   Do you think it’s advisable for me to get a second opinion? (If the doctor says no, switch doctors.)

One of the helpful results of self-advocacy is that you are better prepared since you are equipped with the answers to your questions! I wish I’d thought to ask before chemotherapy, “What can be done to help alleviate any potential side effects?” I heard about the “cold cap” method to prevent hair loss only after I was bald. I’m not saying I would have opted for it, but it would have been nice having the choice! So whether you are experiencing side effects of chemo like nausea and neuropathy or facing a surgery, be sure to ask your physician about all of the possible ways to relieve symptoms.

A pertinent example of how one should prepare comes from my own experience with a mastectomy. My surgeon had explained to me before the surgery that I would need to do arm exercises in order to have full range of motion on my affected arm. Upon discharge from the hospital, I was issued a handout with not only his directions but drawings illustrating what to do. I was diligent about following the advice to squeeze a stress ball and do arm exercises every hour. By doing so, I was able to fully use my arm and extend it completely. Other patients who did not exercise got frozen shoulder or couldn’t fully extend their arm. So always ask the medical team what you can do to help yourself.

By knowing what to expect, you can relieve anxiety and unnecessary worry. It is important to speak with your medical team about expectations for each protocol. Knowing ahead of time gives you confidence because you will know what symptoms are considered normal. A very minor example, but a case in point, is when I underwent my first ever MRI scan with contrast. The attending nurse explained the procedure and what to expect in terms of clanging noises, ability to communicate with staff via intercom, and length of time. She also added that I may experience a warm flush which could feel as if I had wet my pants. I was grateful to know that beforehand. It would panic me to experience something I didn’t expect or understand. 

Consequently, to avoid stress, become your own advocate! Ask every question you can think of and then ask if there are any other subjects you should be asking about. Discuss expectations with someone on your medical team. No one can predict exactly what you will go through since people react differently, but at least you will have an idea of what the future holds. Also, find another cancer patient who can share their experiences, first-hand. In a cancer battle, forewarned is forearmed.

Reflection:

1.  List times you’ve benefited by knowing expectations in any situation (not necessarily medical).

2. Do you feel rushed at doctor appointments? Do you have time to ask all your questions?