Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Greetings!
I had a talk with a few doctors and found a few things out they don't tell us regularly! and they are important!

Please, make sure after surgery you do NOT have a bladder infection! Be aware this can show up weeks after surgery so if urine is darker or any changes are seen contact your Onc an get a test asap!

Please, have blood work done to see if you are anemic or deficient in vitamin D an B an others!

After our long and physically hard surgeries in most cases minerals are stpipped down segnifficanty! Talk to your Onc about taking something or eating different to re fill the minerals lost.
This is not only detrimental to healing but our immune systems in healing and fighting off sarcoma!

A few simple steps will help in your recovery an wellbeing after a surgery! <3

Hi Amanda
I agree that the subject is not talked about enough!
The only time we were talked to about Joshua's health and about nutrition was becauseJosh has a tendency to be too thin and the docs wanted him to gain weight! Sorry Josh

Thanks for the posting the importance of taking care of our bodies
We take care of our bodies and they will take care of us.

Love
Debbie

The bladder infection is a real danger after the catheter is used during/after the surgery for the patient to pee. This catheter needs to go as soon as possible as the longer it stays, the more is that probability (the same goes withheld raining tubes of all sorts). This is a good topic to attract the attention!

Dear Amanda, Debbie, and Olga,
I agree that this is an important topic to be aware of. Following one of Brittany's spinal surgeries and the removal of her catheter she had ongoing bladder and urinary tract pain and pressure which resulted in her now having to take a daily prescription medication on a continued basis to control the symptoms. Apparently the catheter placement caused some damage to the urethra or urinary tract.
With special caring thoughts and continued Hope,
Bonni

Pain pain pain!!!

Please, remember after a HUGE surgery there will be nerve and muscle pain an believe it or not that loving surgeon that you thought would be there to help you is ***POOF GONE***

Mines reply to the pain 10 out of 10 is

Yes, this phenomenon does happen??? WTF does that mean? you ego maniacle asshat!


Make sure you keep them on top of your pain even after six months! I was doing great then a lil sholder pain an now its two month in horrid pain an they are talking nerve blocks but Mr surgeon is not around and they cant guess and pick a nerve they need to talk to him..
maybe the phenomenon is he has disappeared!!!!

I am a physical train wreck! It is hurting me this pain for two months! I am wondering if i should have even done the jaw surgery!!!!

An i should have done CRYO *cold* to kill this jaw met! But because no one would scan it!!! It had done to must destruction of the bone!!!

People we need a Onc bat that comes into the room when we ask for a scan or any thing that is reasonable that smacks them silly *NOT hurting them*
If they would have done the CT of my JAW as i asked an read it or even looked at it I SAW IT!!! why couldn't they have?

bastages!!!

An now i sit looking like Frankenweenie in horrid pain of this Phenomenon!!!!! I hate that word now!!!

Ok left a msg for both surgeons an i hope an pray they talk to my pain Dr an this pain is healed