Palliative care/Hospice… Wait… What?

Wait... What

(((Caution:  a naughty word lingers amongst the others… but remember… this is a journal and sometimes naughty words are definitely appropriate)))

I decided to keep my appointment with Palliative Care, although it was against my better judgement and especially since it was presented to me as if it was purely pain management.  What did I find when I got there?  Very friendly, kind, overly personable folks that dealt with me as if I was there to arrange a funeral.  I was not.  They wanted to prescribe opioids for pain.  I did not want them.  They had few alternatives, but ended up prescribing an anti-inflammatory… reluctantly.  They then sent the prescription to the wrong VA source that would have never filled the prescription and never notified me of the mistake.  I was asked about fifteen different questions about being depressed.  How many times does one have to tell another… I’m not fucking depressed… so please stop asking me before you cause me to become depressed. 

They wanted to talk about advanced directives and whether or not I wanted to be resuscitated, if I wanted chest compressions or not, and when I indicated that I might consider initial, short term chest compressions… they said with pronounced assurance…  that my bones would break in my chest from the force of the compressions, especially the sternum where it had been separated for heart surgery… and …”the crunching sound would be horrible.”  Really???  Horrible for who?  The person doing the compressions?  After all… if I needed chest compressions… I most likely would be unconscious and I seriously doubt that my hearing would be at its finest in that moment.  I think she was worried that she might have to be the one to do them.  So… if that’s the case… why ask in the first place.   

It was all just a wonderful experience.  As I said in a previous post… I feel as though I’ve become an honorary member of the walking dead.  Why can’t they treat patients as if they were going to improve… perhaps beat cancer altogether… and live another few years without pain?  Why not offer them “HOPE”?  Why is that so wrong?

After arriving at home, I reviewed the paper work they provided, including the medication… that’s when I discovered that they had Fax’d it to the wrong VA facility after I had carefully explained where to send it along with phone numbers with extensions, my VA primary care doctor’s name and the person that they should actually contact there that would take care of it.  The prescription also indicated that I would pick up the prescription at a facility in a completely different city.  Really?  Am I already seeing incompetence at Palliative Care?

The following day I had to go to the local VA for blood work.  That actually went remarkably well.  After that, I proceeded to the desk after being told that I needed to come in and see my team’s nurse to get my new medication straightened out.  Fifty minutes later, I finally got to see the nurse and explain the mix up on getting my new medication.  She assured me that she would straighten it out, have it sent ‘overnight’ and everything would be wonderful.  As of this date, that overnight delivery has taken eight days and I still haven’t received the meds.  The VA at its finest. 

I had a one day reprieve to take care of errands etc. before I went for the needle biopsy with a new pulmonary doc which was definitely a unique experience.  She deadened the skin and then inserted a rather large needle into the right side of my back between the ribs.  I will say… I found it to be quite a painful event.  Four large vials were filled with fluid that she drained from the pleura of the lung.  She continued to draw fluid from the same area after the vials were filled.  When she removed the needle and placed a large bandaid over the puncture, I asked how much fluid she withdrew.  I was totally surprised.  She held up a plastic bag and it contained somewhere between a third and a half of a gallon of bloody fluid.  She then said that I should be able to breathe a little better after a while. 

Since that time, my lung is making more noise than before, feeling as though it is popping or something 10 or 12 times with each deep breath.  My chest and side are sore in strange places, I’m actually not breathing any better and my cough has gotten considerably worse.  However… I am happy that there has been so much fluid removed from my lung lining.  The chest xray following the removal of fluid indicated ‘moderate pleural effusion’… so… there’s more there in different locations and the lower lobe has a significant amount as well… I wish that could all be removed.  I’m not real anxious to find out how expensive that fluid removal will be.

I have a follow up with the oncologist next week as well as with the pulmonary doc.  Supposedly, I will find out just what kind of cancer is lurking there.  My guess is that it is the same that was found in the lymph node of the neck several years ago… squamous cell… but I also have some concern that they may not find out anything from testing the fluid they removed, which means they will want to do something else to make that determination.  I do not.   

I have many questions for the oncologist at the next appointment, but one question will be a little different than the others… I will ask the oncologist this question (off the record)… and see if I get an answer: “What could have been done or “should” have been done last April after the PET scan indicated that the tumors were still present and active… that might have prevented the spread of the disease?  It’s going on seven months since that time and still… nothing has been done to slow the progress of the disease except hurry up and wait for this test and that test that  so far… has offered no new conclusive results.   

Time will tell…

Tick…………………………… Tock……………………………

Hug someone you care about…

Wishing you all a most beautiful day!

Michael33

 

2 thoughts on “Palliative care/Hospice… Wait… What?

  1. I’ve been thinking of you, praying, and checking frequently for your blog updates. Sounds like frustration galore with all the new doctors and mix-ups. That’s a perfect kitty photo for this post. Wishing you health and peace of mind.

    Like

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