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In the dark without a flashlight

BarbaraH
Posts: 9
Joined: Sep 2016

Here I am, for the first time on a messsage board. Lately, my emotional state has taken a beating. It was suggested to me to try this site. Another first is me admitting I can't do this alone. Talking with friends and family is all well and good, but I want to talk to someone who has been there. This roller coaster ride has been going on too long. My profile shows what I have dealt with, and my biggest frustration is feeling clueless about the future. I plowed through surgery and three rounds of chemotherapy, went through the hair loss and the whole bit. My treatment plan was changed to sandwiching 28 rounds of external pelvic radiation therapy, then three more rounds of chemo. Side effects from radiation were severe enough to postpone chemo round #4, not once, but twice! 

When you can't get a straight answer about what is going on in your body, and why the side effects are not improving, well, it's frustrating. Long story short, I landed in the ER for fluids, and potassium levels were low enough it felt like I was dying. Good news is, physically I am on the mend. Emotionally, not even close. The family is beginning to get impatient with me and my recovery process. My pile of emotions and uncertainties just gets harder to deal with. I'm not crazy, just scared and looking for a way through all this. Any advice is welcome, and humor is welcomed with open arms!

janaes
Posts: 800
Joined: May 2016

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

BarbaraH
Posts: 9
Joined: Sep 2016

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!

MAbound
Posts: 1153
Joined: Jun 2016

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!

BarbaraH
Posts: 9
Joined: Sep 2016

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.

MAbound
Posts: 1153
Joined: Jun 2016

From what I've been reading about the different ways radiation therapy is delivered, it's sounding like the sandwich technique, given between chemo treatments, tends to be more intense for people as far as side effects go, but potentially gives better odds for cure. I'm not sure why it was never proposed for my treatment, but in any case realizing that may be the case, it gives me hope that I'll be able to get myself through it getting it after my chemo is already done. The heads up on what to prepare myself for seems to be pretty consistent, so I'll be sure to have depends, tp, and Immodium on hand! Yuk!!

BarbaraH
Posts: 9
Joined: Sep 2016

Score from MAbound! You got a laugh out of me. Oh, and the word I messed up was "cumulative". The ER nurse was more informative than my doctor about what's going on in my body and why I was so sick. I love that lady for taking the time to explain. I may not have a flashlight, but I'm gathering more lighters as I go. Feels good to watch the light grow brighter. Good luck and please give me updates on how you are doing. I like sharing! It helps!

BarbaraH
Posts: 9
Joined: Sep 2016

Hahha, not sure why cumulative shows up the way it does. Looks ok from edit page. Synonym: increases. Didn't want you to think I'm illiterate lol

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1801
Joined: Jun 2015

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

BarbaraH
Posts: 9
Joined: Sep 2016

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.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

 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

BarbaraH
Posts: 9
Joined: Sep 2016

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.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Don't feel bad about not being able to give like you used to.  Those days will come back.  Right now you need to let someone else to the giving and you heal and do a little taking.  I pray that your support team has the patience to help you through this.  Like Eldri said ask your doctor for  perscription for anti depression or anxiety med. there is no shame in taking them and they have helped many.  In the meantime we are sending you many hugs.

Lou Ann

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

It's such a tough road and having those who have travelled or are travelling the same road make the bumps a bit less jarring.  I'm glad that you have found us.  When cancer comes, it brings uncertainty with it, and I'm not sure that visitor ever leaves.  Learning how to live with that and the physical repercussions of treatment is a seemingly never-ending process.  And yes, family and friends don't really understand the toll that can take on one, but we do.  

Diya
Posts: 93
Joined: Apr 2015

Barbara, i am sorry that you are going through this journey. Noone in the world should go through this but sadly there are so many going through it. This illness and treatment both are so physically and emotionally demanding that it is so hard to comprehend by those going through it, other people have no chance of understanding it! One thing i find that helps is to take one day or one hour or even one minute at a time and move forward with your best foot and then worry about the next minute. And when you have no flashlight, let the stars around you be your light. I have come to realise there are so many stars around us in the forms of family, friends, doctors, strangers and people going through the same journey etc. Dont worry about people around you growing impatient. They will come around. Just keep moving forward with your treatment and focus on your recovery... sending you lots of love and hugs!

BarbaraH
Posts: 9
Joined: Sep 2016

What a beautiful thought you shared with me! Yes, there are many stars around us, and yes, you just made them shine that much more brightly for me. I need way more help emotionally than physically now that the side effects are not so prominent. Let me share another first for me: I scheduled an appointment with a mental health professional. The soonest I can get in is November 17. Seems a long ways away but I will not cancel! In the meantime...I'm so glad I found this place. I am feeling the love today. Thanks!

EZLiving66's picture
EZLiving66
Posts: 1479
Joined: Oct 2015

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 

BarbaraH
Posts: 9
Joined: Sep 2016

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!

EZLiving66's picture
EZLiving66
Posts: 1479
Joined: Oct 2015

Maybe you can talk to your doctor about anti anxiety or anti depression medication.   Some of the ladies on here have also used that.

Love,

Eldri

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Hi Barbara, so sorry that you are having to deal with other peoples emotions when you should be concentrating on healing yourself.

I also had the sandwich technique just like you're describing but I was lucky and only experienced mild side effects. My diagnosis was uterine carcinosarcoma, stage 1b, grade 3. What is your diagnosis?

Looks like we both had surgery about the same time (December 2015). I've completed treatments and have been NED since June 2016. You will get there, too.

Remind your loved ones that this is a marathon, not a sprint. There is no set deadline for the end of treatment. It is a fluid process and depends on how your body is responding. This is serious, live-saving stuff. With all the new treatments out there, some are even considering cancer to be more of a chronic disease. Surely, your loved ones surely wouldn't try to rush you through treatments if you had a chronic disease like diabetes?

The best advice I was given is to stay positive - you can't control much about what is happening to your body (or to the emotions of those around you) but you can control how you react to it. You can get through this - hang in there!

Wishing you peace and strength, Kim

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

Hi Barbara,

Please, please, please give yourself a pat on the back because you are awesome!!!  You have been through a lot and are continuing to heal physically and emotionally.  I have found both kinds of healing to take an incredible amount of time!  Even after the bulk of the healing, do not be surprised if you encounter guilt, I know I did...when I started feeling like my old self again, I had a tremendous feeling of guilt because so many special people were not  lucky survivng cancer.   I asked why me when I got the cancer, then asked why me when I survived it.   Just know that you are here, and that's what counts.  Share with people so they can grow too,  use your flashlight to comfort others.

rcdeman
Posts: 263
Joined: Aug 2016

I'm sorry there are so many going through what you're going through. We all have to be strong and support each other in our time of need. Although I'm still a beginner in all of this, I am learning more each day from all the lovely and strong ladies here and feel encouraged by their stories and the will to live. You are strong, Barbara, because you've already gone through so much. It's not unusual to become emotionally drained during all this. I'm already emotionally drained and I'm only at the beginning of the journey with my mom. Strength and prayers for your emotional and physical well-being.

Rebecca

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