A Reluctant Spokesperson



I knew that I had to accompany Dave to his appointment yesterday.  I felt that he needed me to share my perspective as sometimes he downplays what is really going on.  Before we went, I made a brief list of what needed to be discussed.

* Depression – signs I am noticing, how to treat, things to watch out for

* Chronic side pain/ unresolved stomach issues – reluctance to use pain meds, dietary changes, other solutions?

Usually when we go to appointments, I sit and listen only asking an occasional question.  I had to gear myself up to take the lead and contradict Dave if necessary – not my favorite role but it had to be done.  Dave’s appointment was with a research nurse.  While we were waiting for his labs to be drawn, she started asking him how he was feeling.  My ears perked up when she said “Any issues with depression?”  Dave said only a little mostly caused by fatigue.  I jumped out of my chair so I could get closer to the conversation.  I explained to her that I had gone away for five days and when I returned I noticed such a dramatic shift in Dave’s mood that I asked him if depression could be a side effect of the trial medication.  Turns out it is.  I explained about the list I had printed out from the NIMH website and how Dave related to almost all of the signs and symptoms.  She asked Dave if he thought he needed anything to help with it.  He said no.  At about that point, Dave was called back to do blood work so she said she would talk to us afterwards.  

We met up again a little while later.  She went through the standard checklist reviewing medications and side effects.  When she asked about pain I prodded Dave to talk about his side pain and brought up his reluctance to use the prescribed pain meds.  She encouraged him to take something when needed to stay ahead of the pain and reassured him that they are more than okay to use.  We discussed his ongoing stomach issues.  She wrapped up by saying that after consulting with Dr. S she had called in a prescription for Dave at our pharmacy for an increased dosage of Zoloft.  She also told us she had made an appointment with Dr. S for Monday afternoon so we could talk about the chronic pain and the depression with him.  I was relieved to hear that they were taking the depression seriously and I felt that she was very much listening to what I was saying.  When you are sitting there it is so easy to start doubting yourself.  Am I making this a bigger deal than it is?  Is he depressed or is he really just tired like he is saying? 

We grabbed a quick bite to eat and then headed home.  At that point Dave was miserable.  You see he had been in pain Wednesday night.  So much discomfort that he wasn’t able to sleep.  But he didn’t take anything for it.  So by the time he took something with his food, it was really severe.  He ended up throwing up breakfast, the pain pills and whatever else he had recently ingested.  I headed into work once I could see that he was resting comfortably.  Last night we talked about the appointment and I reiterated the point made about taking the pain meds when needed.  He agreed with me and knew that the vomiting was directly related to the pain.  Lesson learned.

I am glad that I went with him.  I am glad that I voiced my concerns.  And I will definitely be going with him on Monday.



6 thoughts on “A Reluctant Spokesperson

  1. Good for you in taking the lead. It is hard to do, but it has to be done so they have a true picture of what is going on. It was good to hear him sing the fight song on the afternoon announcements the other day. He is missed at school.

  2. Good for you speaking up Robyn. Dave has to learn he has to keep his pain under control before it gets out of hand and then nothing helps. Everyone needs a little help when it comes to pain with your body. Depression I’m sure is a big part of his illness. Everyone I’ve ever know with cancer deals with depression on some level. Robyn you are doing a great job in all of these unknowns!!!

  3. I’m happy they are finally addressing the side pain; no one should be having that kind of pain without knowing what is causing it and trying to fix it or at the very least try to control the apparently excruciating pain he suffers from it.
    I’m also sad that that he could have felt that it might be “in his head” as they continually didn’t take him seriously enough to look into it in depth! Doctors are not perfect, that is why each patient needs to be their own advocate or trust someone else to be their “Barracuda” in getting the best possible care for the patient.
    I am amazed at how well the medical staff does do considering how many patients they see in a day. So it seems it is very important to prioritize what is really bothersome and make it clear you NEED it addressed Now!
    I Wonder if these teams periodically ask the question seen on the back of trucks “How are we doing” ? I think sometimes it needs to be verbalized rather than handing you a piece of paper or a website. By verbalizing it, they can then see the emotions behind the real frustrations of what seems to the patient to be “glossed over queries”.
    Dave is indeed lucky to have you as the “conscientiously kind Barracuda” in his corner.
    Love to all of you, Mom

  4. I read Pam’s comment and I could just say “ditto.” I know that doctors always say to not let pain get a hold on you. It is much better to take the pain medicines. That is what they are for, and there is no need to be in such discomfort if the meds can alleviate it. You are doing a wonderful job as his advocate. A tough job, but you seem to have a good handle on it. Probably good that you had that great vacation to rest up and get ready for this next experience. I keep you in my prayers. You are amazing!

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