In the dark without a flashlight

MAbound said:

It is a long haul

I'm not as far along in treatment as you are, but it's been since the end of March that there's been so much to deal with and my normal life has been put on hold. It's hard on us as well as our families that this all takes so long to slog through and is so traumatic of a process. Fatigue with it all is bound to get to some of us sooner than later, including our family members. We all need to forgive ourselves and our loved ones if we stumble periodically as we fight this. 

This forum is definetley a good place to come to share your story and seek support when you can't find it elsewhere. Sharing you experiences and feelings will help others more than you know and doing good for others may help bolster you a bit emotionally. I'm curious, as I am facing radiation, what side effects you are dealing with? 

Hang in there! There will be ups and downs along the path, but you are not alone on it here!

Oh my gosh...finding so many replies this morning to my first post is very uplifting! I want to send flowers to the ER nurse that told me about this board! Okay, to answer your question about radiation side effects. Everything in the pelvic region is subject to radiation exposure plus radiation is cumulative. For me, it was a couple of weeks after radiation was complete before the side effects set in. Fatigue and diarrhea  were the worst of it. My bowels still feel irritated from this ordeal, but it's getting better every day. The urgency to go to the bathroom was upon me almost before I could get to one, so listen to your body's signals. I've had to retrain my bowels to wait for me to get to a bathroom, which is improving daily as well. It was a big hill to get over, but I made it, and so can you. Stay hydrated, make yourself eat something, anything. It's probably going to run right through you, so the more you can put in, the more your body has to work with to heal. Nothing is fast about getting past radiation. Oh yeah, stock up on toilet paper, honey. You're gonna need it lol. Ask me anything you like and please share with me what you are going through when your treatment starts. MAbound, thanks for the welcome to the group.

janaes said:

Barbara,  Welcome to our

Barbara,  Welcome to our board. This is the place to be for support.  Sounds like you have been through alot.  This cancer stuff is really tough some times.  Sounds like you have been working hard at this and as others would and have said to me, it sound like you are doing a great job at it. 

Im glad you found us.  It has helped me so much to have others who knows what it is like.  Its hard for family to understand, but here i get the support.

With lots of love

Janae

Good morning Janae! Your words have lifted a heavy stone off of my heart. I think this last scare of me having to go to the ER has put the family over the top as far as patience goes. Regardless, the ER and my family doctor determined that the culprit was low potassium levels, which has since been corrected. Physically, I'm on the mend. Emotionally, not so much. It feels like I'm being shut out and blamed for not taking better care of myself. It's hurtful and I try my best not to have a knee-jerk reaction to it (I tend to put my foot in my mouth lol). On the other hand, they have been through a lot as well. Sure will be happy when we find even footing again and the tension eases up. It's isolating, which makes this board that much more important to me. Thank you for being here!

Lou Ann M said:

Welcome

 so sorry that you had to come here, but glad you found us.  This is a great place to to find encouragement, support and information.  I agree that you need support from those who really understand what you are going through, and we do here.  This is a hard, hard roller coaster ride.  Be patient with yourself.  It is also a long ride. It's hard but be patient with your love ones.  Cancer can be hard on our support crew too.  I think that sometimes this is harder on my wonderful husband than me.  I know how I feel and he just has to look and guess.  I can go quite awhile than my emotions get to me and  I have to sit down and have a good cry.  I think we are al like that.  If your emotions get really to much don't be afraid to ask for help.

Hugs and prayers,  Lou Ann

You are so right about the good cry! Very cleansing, and I always feel better after. But, when it happens too often, I feel obligated to bury my face in a pillow so on one else hears. If they hear, they get frustrated. I can't blame them and I don't want that avenue shutting down on me. I had been taking more and giving less due to side effects and the emotional turmoil I was in. I'm working through it and getting stronger every day. I got bridges to rebuild! Hey, it's better than thinking I burned those bridges beyond repair. That's a tailspin I could live without lol. Thank you for your encouragement.

TeddyandBears_Mom said:

Barbara, So glad you found us

Barbara, So glad you found us. This road is not easy and trying to do it alone is just way too lonely!

No one can truly understand what we go through unless they also have experienced it. There are several ladies that have gone through the 28 radiation treatments along with chemo that may be able to give you more support. I had the internal radiation along with chemo so my radiation wasn't difficult like the external is. I hope you are starting to heal.  My understanding is the fatigue is horrible. I had bad fatigue with chemo and that was hard enough to deal with. It's probably really good that they are delaying your 4th chemo until you get a bit stronger.

I hope you give yourself permission to rest, rest, rest. Your body is going through a lot. Sometimes just putting one foot in front of the other is impossible. And, this takes a toll on us emotionally and physically. Your family may not truly understand this is a long haul process. So, I hope you all can find a way to accept the limitations. You still have a ways to go!

Please ask us anything. Nothing is off limits. Someone will have an answer for you.

Let us know how you are doing.

Love and Hugs,

Cindi

Thank you, Cindi, mainly for reminding me this is a long haul process. It's not over til the fat lady sings! I have a CT scan scheduled at the end of September. I'll see my oncologist a week later to discuss the results. Hopefully, we are done with treatments. If not, it may be chemo time again. Keep your fingers crossed lol.

EZLiving66 said:

Welcome to the group!  I made

Welcome to the group!  I made it as far as three chemos before I had to stop.  My last one was almost nine months ago and I'm still dealing with the side effects.  The fatigue is there everyday although nowhere near as bad as it once was.   I still limp a little from a chemo induced stroke and suffer neuropathy in my feet and fingers..... but I'm alive!!   Hopefully those three chemos got it all but if not,  I'll deal with it.  (((Barbara)))  you're among friends! 

Love, 

Eldri 

Hi, Eldri. I am so sorry you had to deal with a chemo induced stroke. The side effects are difficult enough without that complication. My neuropathy is still with me, but it actually seems to be improving from week to week. I grinned at "but I'm alive!" because that's kind of become my motto. Damn the torpedoes, full steam ahead! I am alive (even though it felt like being at death's door a number of times). It messes with your head when you feel that bad. Stay strong and thank you for being here. My mental demons are weakening in the wake of positive thoughts. Feels great!