Pain & Symptom Clinic take 2

I had my appointment with the other doctor in the Pain & Symptom Clinic a few days ago.  What a difference a doctor makes!  This other doctor was another older, white male but his disposition was the exact opposite of the 1st doc.

Oh wait, a cute cat pic.  When I left for my appointment this is what my bed looked like:



Miss Orchid can be a cuddle bug.






Okay, with that out of the way, back to the doctor’s appointment.

This doctor was friendly and actually LISTENED.  It was quite amazing.  I went into the appointment all prepared to start yelling.  I had even thought about what I would yell and was trying to remove most of the swear words and some the more nasty comments.  Totally unnecessary.  The appointment was totally smooth and completely respectful on both sides.

We went over how things were currently going.  I explained that as the latest treatment has been kicking in the swelling in my arm has been decreasing.  The nurse that was with us had been present at the 1st appointment and she commented on how much more motion I had in my arm, especially my hand.

We discussed pain and I said I didn’t have any other than some pain in my knee that I managed to gibble up the previous week.  He asked if I was taking any Tylenol (!) for it and I said I did a couple of nights to make sure I could sleep.  I added that one night I was feeling crazy so I took two (regular streangth, of course).  He laughed and said what a great painkiller Tylenol was.  He went on to explain how, even with his patients that do need fentanyl, he still recommends Tylenol.  As the Tylenol works through a different pathway he finds he can keep the fentanyl dose lower by using the combination.

As I said, this doc was pretty much the exact opposite of the last one.

We covered a few other things, I mentioned about getting a tensor bandage to do some light wrapping of my arm (any massage therapists out there are probably throwing fits at that idea, as you MUST use the SPECIFIC type of bandage and do it some SUPER special way) and the doc was all for it.  He said any compression plus elevation, which I already do, would be helpful.

So, overall the appointment was really relaxed and I think we all escaped feeling as though a decent relationship had been started.  It was decided I would come back in a few weeks after my next CT scan and oncology appointment just to make sure things were still improving or to deal with anything negative if it shows up on the CT.

After that appointment I had to kick around the cancer agency for a bit.  I got caught in the middle of a group of people taking the Transitions course offered by the Cancer Agency for people who have ended treatment and are on the point of returning to the real world and going back to work.  One well-meaning participant suggested that I should take the course even after I had explained that I was stage IV so the treatment never ends.  I saw one of the course leaders cringe at the suggestion as she and I both know how utterly useless the course would be for me.

Listening to those course participants sure reminded me how much I hate not working and everything that means.  The not having a real purpose, instead of helping others I am totally dependent on others to keep me alive, living on a fixed income, watching others able to make progress in their lives and get a little further ahead.  I just get to be thankful for each day that I make it through, and while I am thankful – most of the time when the symptoms and side effects and living on a schedule dictated by pills and injections and doctors appointments don’t make me feel beaten down – but if I had just one more month of my old life I would happily give up a year of my current life to live it.

With that crankiness done, I had to trek over to the Anti-Coagulation Clinic to find out my platelet count.  This appointment really could have been done over the phone, it took a whopping 3 minutes.  My platelet count is fine, I don’t have HIT.  I’m slightly anemic with a hemoglobin of 108 g/L and come back in 3 months.  In the meantime continue the anti-coagulants and don’t slice open any major blood vessels and bleed to death.  I think I can work with those instructions.

Next week I have a CT scan and for the first time in a long time I have scanxiety.  I am right in the middle of cycle 3 of Capecitabine and Lapatinib which is the point at which the TDM-1 failed.  As of right now I am fairly sure the treatment is still working but I have to say the paranoia is setting in.  My arm continues to slowly improve and I also think there has been a bit of shrinkage of the mass in my armpit, but I have noticed a couple of bumps that freaked me out.  The truth is I have no idea how long the bumps have been there.  It is totally possible they have been there all along and they just haven’t totally disappeared yet, I have no idea.  I have been so focussed on my arm that after the majority of the skin involvement healed I stopped paying any attention to it.

Well, there isn’t anything I can actually do to make the situation better, and I know exactly why it is more stressful this time, but that really doesn’t help.  When this treatment fails I don’t actually know what the next step is.  I think I will be pretty much out of targeted therapy options which would leave only chemo.  And I have to say that I am really not at the point where I want to lose my hair again, so here’s hoping for good scan results. 😄

The CT is booked for Thursday the 9th and I see my onc on the 15th so I will get the results then.

One thought on “Pain & Symptom Clinic take 2

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