Should I be this frustrated??????

Duke, I had a love hate relationship with my pump..a stylish bag helped the relationship!
Cilllie, I second Dukes post. Hang in there.
Peace
Lisa

Duke….You make us all smile. It’s a good day all around. Chemo often kept me awake the first night …sometimes the second one too. Typically, it’s the steroids that do it. Not sure what to say about the location of the port. Seems like you and the cats are going to have to a meeting of the minds on that one. Cats generally win.

Well, it’s 3:45 in the morning, but I’ve frequently had trouble sleeping after a chemo, so this is not a surprise. I have to get used to the fact that I am wider than normal with the pump on my side – keep bumping into things. And which side do the cats want to lay next to when I’m on the couch? Moving it to my stomach doesn’t help because that is their favorite spot – warm and soft.

Cillie – you see that you can always come here for support. Your third paragraph matches me pretty closely, although I try to offset my “black” humor with outright silliness at times. If I can get someone to smile, it’s a good day.

Duke

Duke…..glad to hear that you got a good “install” on that chemo port. As you know, there really wasn’t anyone crying tears over the fact that I got mine out as soon as chemo was done. It was so poorly installed. There seems to be some controversy over who to go to for installation….an interventional radiologist…or a surgeon. I’ve heard both ways are better and both ways are worse. Gah!

Good luck with the pump tonight. Let us know how it goes. I imagine it will take a bit to get used to it ….but kind of like a sleep apnea machine…at first it’s a big pain in the ……wherever….but after a while, you don’t notice it much.

Will be thinking of you….Julie T.

Cillie,

Glad that you’re “back on track.” You sound more upbeat and positive today…more like you know what you want and you’re going to get it.

I’m sorry I missed your original post. I tend to be pretty sporadic in reading the posts, depending on what I’m dealing with myself.

We all wallow in self pity from time to time…sometimes more than others….it hits when we least expect it sometimes…but yes, I think that the folks on the boards do understand what you’re feeling…more so than others. Sometimes you’ll get advice that doesn’t seem to mesh with your thinking, but that’s okay….because everyone goes through something just a bit different …yet it is all sort of similar at the same time. The best thing is that everyone on here knows how we’re feeling…..we’ve all been through stuff at one time or another. CC is it’s own special cancer beast….and hearing others who have or are dealing with it with determination and clarity really helps.

Third what Duke said except regarding the port. Our regret in this is that we didn’t get Mom the port right away. She never had good veins and the Gem/Cis will make the veins more brittle as treatments go on (ONC says the damage is permanent) We thought for only 3 cylces, why bother. However, there are blood tests and IVs needed during scans as well. But time we went for the SIRT, they could not get a vein after trying for an hour and her doctor ended up doing the port w/o the sedation of the IV. Some may have good veins, but all of her infusion nurses said that the first thing they would do if diagnosed, would be to have a port inserted. I know there is always infection risk and need for flushing if unused, but I wish we had saved my mother the apprehension and pain she went through finding veins for the first few months.

In no particular order:

Dr. 1 really doesn’t want to Dr. 2. In fact, when they did, they went away with two different ideas on what the other said.

And I’m missing the big picture on the Dr. visit. When I was on a two weeks on, one week off schedule, I would have a blood sample taken, start the preliminary chemo drips, then go see the doctor pushing the IV tree. Then back to finish the chemo. So, why did you doctor call off the chemo? The only time mine called it off was when my platelets were too low.

Why did they insert a port so soon?

I think there is a secret script for doctors who are not CCA knowledgeable. You take a certain treatment for x months then you have to change to something else, even if it is working and you are tolerating it well. That way they can say “I followed the standard treatment plan.”

OK. Last thing.
Negative emotions.
Anger is ok initially. Get it out and over with. Don’t hold it in. Then stop it. It only hurts you as a person.

Frustration. Understandable; from time to time. Let it go. Visualize waves breaking on a beach.

Sadness/anxiety/depression. Release. What has happened is past. Look to the future.

Fear. Not allowed. It freezes you. Makes you make bad decisions. Makes you second guess yourself. Face it – we’re going to die “before our time” (whatever that means). Make every day the best you can for yourself and those around you. On any given day you probably have a higher chance of dieing from a car accident on the highway than from CCA. That doesn’t stop you from driving, does it? You don’t panic every time your husband leaves the house, do you?

Positive emotions.
Love. First, last, and always. Know that there are many who love you. Family and friends. Your family on this site even though we have never met you in person we love you and hold you close in our hearts. God loves you.

Faith. There is an order to the universe. We don’t understand it, but we don’t have to. I don’t understand how a computer and software work, but I use them daily. (I will admit that sometimes my faith in Microsoft is strained.) If there were no order and life was an accident then there is no purpose to anything. I refuse to believe that.

Take a couple deep breaths, hug your child then kiss your husband and hold him tight.

Peace,

Duke