Re: Start tomorrow. So scared.
Posted: Mon May 21, 2018 2:12 pm
lakeswim wrote:Thanks to all of the folks who have posted here! Such wonderful support - THANK YOU!!
I returned from the infusion center around mid-day and took a walk with a friend and I feel mostly okay so far. As far as what I've experienced so far.... it did hurt a little when they accessed my chest port for the first time (and I had had the ointment on for 45 minutes). But after the initial access and a little cold feeling with the first saline, I didn't feel much in terms of the port. The throat thing was the first thing I noticed - halfway into the Oxy infusion, drinking room temp water - my tongue felt odd and swallowing felt like I had a sharp object in my throat (I had my husband look in my throat!). I look forward (!!) to seeing how this throat thing will feel as it gets worse and I guess I'll need luke warm water (as some of you suggest). During infusion, I felt sudden fatigue every once in a while - and I assume that's the Benadryl battling it out with the steroid. I also experienced the first bite thing - which is equally bizarre - when I had a yogurt on the way home. It was slight pain radiating down my jaw line. I happened to combine the two things when I made a frozen smoothie for my daughter 1/2 hour ago and, without thinking, took a sip of the frozen liquid. Lesson learned! I have not yet felt much with my hands - and I even took a bag of frozen fruit out of the freezer without thinking - so I guess that's still in my future. I am feeling a bit of pins and needles right now in my hands/arms. I'm curious how many people on this forum have the neuropathy long term or lifelong? Well, hour 6 now and we will see how this goes into tomorrow (AND sleeping with the pump, which should be interesting). Thanks again for all your lovely support. Very grateful for you guys!
Glad you got through it and now you know. Things will likely get more intense with additional infusions - be sure to keep your oncologist up-to-date with the side-effects.