Wednesday, November 11, 2009

Things I've learned so far

Never, ever, stand directly in front of a laryngectomy patient when he coughs

If you’re given a PEG tube, make sure the cap is firmly taped shut at all times

Don’t cough while using the PEG tube unless you want the “food” all over your lap

Visiting nurses don’t always know everything

Neither do doctors

Patience is not an infinite commodity – it does run out

A doctor will not tell you everything you should know – only what he thinks you need to know

Standing up for your loved ones health care is perfectly ok to do- and should be done whenever that nagging feeling hits – the one that says…”hmmmmm, something is just not right here!”

Just because they can’t talk doesn’t mean they can’t say some really mean things

You are allowed to cry, get angry, feel overwhelmed and hate what has happened to you and your loved one. Just make sure you don’t stay that way

Yes, it is happening to you, too- No matter what anyone else says - this is your disease too.

A good hospital billing clerk is hard to find – a good insurance company representative is an even rarer event. Count yourself among the angels if you find one of these rare people…cultivate that relationship. They are gold and can ease your mind about saving your wallet.

You will be treated like you’re not there -- and, no, it is not ok -- it is ok to remind them that you are there and are involved in the care giving end of things. Sometimes it is ok to be forceful about that!

Do not wash your loved one’s back while steadying him with your hand on his neck……he can’t breathe and will start to make the strangest gyrating motions to get your attention!!!!

Things that are leaking do not necessarily need immediate medical intervention – look first…you could be surprised at how simple the fix is.

A hug eases a lot of worries


  1. Oh my friend you are dealing so well with your heavy burdens. You are so right, cancer is not one patient's disease it is a family disease. Every one's life is changed and in your case your role as a loving, supporting wife is the same but oh so much harder right now with all the extra responsabilites you have. Be strong my friend, you will both make it through this and became more compassionate for the lessons learned......:-) Hugs

  2. Well Quieten they say that you learn something new everyday. It may not have been what you wanted to learn but I guess it's all good in some way. I only hope that things start getting better for you both. Love Di

  3. You have learned so much but how very true that a hug erases a lot of worries!

    Blessings and hugs!


  4. are keeping your wit and humor throughout...and that is certainly carrying you both!!! And hugs...MOST ESSENTIAL!!! Love you...I continue to pray for you both, and hope this week's chemo has not been too hard on you both...Janine XO