I am home...waiting for Michael to finish his round of chemo...doing laundry...picking up...disinfecting...the usual fare that goes on here....But my emotions are all over the board....this past week has been really emotional...as Michael has been in a great deal of pain and insisted that I NOT call the Doctor even after I insisted to many times to count....After getting to the office today, and seeing several of the Docs...it was agreed on that he was experiencing pleurisy caused most likely by the chemo and the speed of the drip that they gave him (which was faster than usual) ...(I'll give you a short explanation at the end of this post of what pleurisy is)...and that by ALL MEANS they should of been called so that they could see him...give him pain meds...He explained that he did not call as it was the weekend and he did not want to go to the emergency room...I gently explained that he would not let me call...against my better judgement I honored his wishes...
But here is where my feelings went all over the board...EVERYONE (friends included) believe I did the WRONG THING...that I should of by passed his wishes and called anyhow...Making me feel inadequate as a caregiver...a wife...But what no one seems to understand is that if I did call (on a weekend when the office is closed) and they told me to get him to the emergency room...he would not go! And how do I get a grown man into the car by force???? How does one do that???? He is certainly at risk for infections...blood clots..
embolisms...and more because of the high dose of chemo....I KNOW THAT...HE KNOWS THAT....But exactly what was I suppose to do???????????????????? So right now my emotions are all over the board...
I am sad...I am disappointed...I am angry...and all I can do is cry....but I am not even sure why I am doing that.....
Pleurisy is an inflammation of the pleura. The pleura is a large, thin membrane that wraps around the outside of the lungs and lines the inside of the chest cavity. Between the layer of the pleura that wraps around the lungs and the layer that lines the chest cavity is a very thin space. This is called the pleural space. The pleural space is normally filled with a small amount of fluid. The fluid helps the two layers of the pleura glide smoothly past each other as the lungs breathe air in and out.
Pleurisy occurs when the two layers of the pleura become inflamed. Inflammation is a protective and healing process characterized by swelling, redness, heat, and pain. The inflamed pleural layers rub against each other every time the lungs expand to breathe in air. This can cause sharp pain with breathing.
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Oh Patty,
If I could I'd give you a big ol' baseball bat and a feather pillow and stand by as you beat the living daylights out of it and could end up sitting and crying on a bed of goose down.
Let me just say this, in the face of what others are telling you ....YOU ARE NOT WRONG. YOU ARE NOT INADEQUATE. YOU ARE DOING THE BEST YOU KNOW HOW TO DO UNDER VERY STRAINED CIRCUMSTANCES. And anyone who suggests differently is a big doo doo head.
Ask the docs for some pain meds to administer at home. Then at least you can keep Michael comfortable. Letting Michael have a say in his care and treatment may be the only way he can feel like he has any control at all in his living and maybe his dying. Honor that and you can not go wrong.
I'm not a doctor. I'm a caregiving daughter and wife who is learning as I go just like you.
Bless you. Bless Michael. Bless the whole bloody mess that you will see the light of the Divine One and it will bring you peace.
Dear Pattie and Michael this is tough stuff. Michael owns this journey and he must decide how to take it. The hardest thing to do is to stand by and feel helpless to alleviate or quiet the pain.
There is no WRONG WAY to do this, you are right that you cannot force a grown person to do something against his will.
Now the docs and/or nurses have told Michael that he should have called maybe their words will carry a greater impact and this will influence his decision next time.
Would Michael ask or allow you to ask the medical folks for pain meds at home that he can take before the pain gets to the level it did? I'm sure you and Michael have been told time and again about pain, not allowing it to get so bad before you take something for it or it takes more drastic measures to stop it.
Pattie, please oh please don't torture yourself thinking of all the things that he is at risk for, infections, blood clots, etc. One thing at a time.
Never, never blame yourself, you must stay strong and you can't allow yourself to beat yourself up.
I'm so sorry...I'll be thinking of you both.
Love,
Pat
not ALL your friends think you did the wrong thing at all, pattie!
i would have done the exact same thing. while you are soooooo incredibly tied up in this journey of michael's, it isn't yours. he ultimately has to call the shots. and anyone sayin' different is totally disrespecting BOTH of you. of course, that's MY opinion. and you'll get thousands of them. not one of them matters except for yours and michael's. and that's it.
i'm sure havin' the strength to fend off some of this stuff just isn't there at the moment. i wish i could give you that.......
or fend it all off for you myself.
wishing you some rest, pattie....
Hi Patricia
I'm sending U hugs & prayers.
U R such a super person in everything U do for UR loved one. I'm sure that he is very grateful for everything that U do.
It is said that God does not give us more than we can handle.
I hope that U do get the medication going so hopefully it can be controlled to a degree.
I'm praying for UR strength in all of this and UR continued love.
Joani
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