What would you have wanted to know

CivilMatt said:

I remeber it well

AS,

Much of what I heard from the doctors, while true, did not mean much to me as I had no real understanding of what they were saying.  When I was told I would lose my taste or forget how to swallow I thought what are you saying?

It was logging on to this site ( before rads) which prepared me more than anything else.  Because of this site, I drank 10 glasses a water a day and never forgot how to swallow (or get dehydrated).  Because of this site, I had my magic mouth wash sitting pretty on the counter before I needed it.  Because of this site, I had my salt and soda at the ready from day one; I had my recliner ready and all kinds of soft foods (which I could not stand).

If I had a recommendation, it would be to immerse one’s self in some preliminary searches here or just randomly reading threads.  If you know what cancer you have and where and what stage, you might fine tune your search.

Depending on your mental state, you need to be careful of applying what you read to your cancer.  Virtually, nobody gets all the side effects, but we are cautioned as if we will.

You can learn everything, you can learn too much or too little, but you are strides ahead if you work with what you got, stay nourished an hydrated, don’t  get mad, stay focused and work the problem.  That is coming from a stage IVa, scc, bot, 1 lymph node, HPV+ (surgery, rads & Erbitux), that only partially had the c _ _ _ kicked out of me.

Matt

Matt, you are so right. This site, including you, helped me be a caregiver more than anything.  I came upon it by accident. It should be shared as soon as someone is diagnosed.

nancytc said:

Biggest Shock

For me the biggest shock was the mucositis that came on after week four. I was gagging up green mucous every 5-10 minutes 24 hours a day for three weeks. If I didnt gag it up and spit it out, it would stick to the base of my tongue and I would throw up. It did slowly subsided five weeks later. I had an amazing support team luckily that guided me through this, as I was so afraid that this condition could be chronic. I slept 15 minutes at a time with head elevated with a bowl to spit into right next to my head and a second one incase I had to vomit. I also kept water with a bit of salt to gargle to loosen it up to prevent vomiting. This condition was by far the worst side effect of my treatment.

 

 

I wish I had known this was going to be so bad and last as long as it has.  My own experience seems very similar to yours.