Husband Starts 1xBEP Today scared and venting

[melanie]

Thank you MTS1994. He was in a much better space mentally and physically when I picked him up from infusion today. No idea why, but Thankful for that. Hope you are feeling well now and wish you continued health

[melanie]

Day 4 and Picc line infection...

[melanie]

Ok! Long week done! Thank god.

Picc line out and and oral antibiotics seem to have it under control. He did ok all week, considering. Some days worse than others.Main issues are constipation, indigestion, body ache and the inability to sleep much while being totally exhausted. Nurse said that was from steroids and would get better now that hes off them.

Feeling relived to be done with the first part but also nervous as we wont be touching base with the nurses daily, his meds will changes, and he will be hitting his nadir. Very worried about that part.

Anyone have any advice or insight going into week 2? I have read some people say that day 6-10 are when they feel the worst.

Thanks for the continued support guys!

[Davepet]

After the first week, I felt the worst on days 6-8, then started feeling better. On bleo-only days be aware that some get a fever & shakes hours after treatment. I did & they gave me a tylenol before treatment after that & it didn't happen again.

Dave

[melanie]

Thanks Dave. I will be aware of that. I do recall tylenol given prior to 1st bleo monday. How were your platelets and white count? Did you every go super low? The more I read about the Nadir the more scary it is. I am trying to strike the balance of being informed but without freaking out of every possible complication. Tricky line to walk.
I feel so helpless seeing him so miserable.

[JoeTheAstronaut]

Melanie, I remember the first cycle (in your husband's, the only one) being the worst - psychologically more so tan physically. Once you're through with it and done, it will over and done with, gone!! Everything should go back to normal. Look after yourself, you need support as much as he does

[melanie]

Thanks Joe! I Sure hope you're right about that! The what if, and unknowns are hard to shake.

[Davepet]

Thanks Dave. I will be aware of that. I do recall tylenol given prior to 1st bleo monday. How were your platelets and white count? Did you every go super low?

I went low enough that I was given treatment to bring the counts up. Even today, my white count is just a few points above the low end of normal.

Dave

[melanie]

Last bleo yesterday! So glad this part is over. Now on to worrying for the rest of my life

[ShawnsWife]

Melanie....wondering how your husband is doing 2 months post chemo? And yourself?

We will be starting 3xBEP most likely next Monday. My husband gets his port Tuesday. Your posts sound just like I feel in my head. The only addition is I lost my Mom after a 10 month pancreatic cancer battle on April 12th. And this with my husband is almost exactly a year to date from her diagnosis. You said balancing on the edge of a knife. That describes me perfectly.

[melanie]

Hi ShawnsWife, So sorry to heard about your husbands diagnosis as well as the loss of your mom! That is a lot to bare.

My husband managed to get through his surgery and chemo pretty well, considering what a miserable experience it is

Recovery is frustratingly slow, but all things considered he is doing really well. It is mostly low energy level and some brain fog that it hanging on. And he still doesnt have hair yet. The hair thing is a constant reminder for us all and harder than we though it would be. All the other symptoms (indigestion, headaches, sleeplessness, etc) went away after a few weeks of completion. Emotionally he is much improved as well. Still has times of sadness, fear, and loss but he is getting better

I am getting better but I think I have some sort minor PTSD going on. During diagnosis and chemo I had waves of panic/ anxiety attacks every day that would bring me to my knees, hyperventilate and cry so deeply I physically hurt after. But then I would pull myself together and go on taking care of everyone and everything . After treatment I was caught a bit off guard about how hard it was after treatment was over. I had thought that I would feel better and be able to put it behind me but this was not the case. It was this weird "now what" feeling. Things felt like they should be over and get back to how life used to be but it did not. That feeling is still there but we are learning how to live this new normal.I stuggle with fear of long term consequences from chemo and relapse but I am slowly learning how to cope.

Hang in there! Be patient with yourself and know that things will ease with time and the odds of a positive outcome are in your favor! This can be a very lonley time so please reach out to me should you ever need to talk.

Wishing you the very best