Dealing with IBC and raising children

Shavoners

Hi everyone. I am so grateful for this website. I was dia. with IBC HER pos on 11/18/08. I had my first TCH treatment on 12/16/08, next one sch for 1/6/08. I had my port put in yesterday (new Years Eve.....)



This has been really hard to swollow mostly because I have 3 small and active children. I was fatigued from the cancer before I evewn started the chemo and well now I am so irritable and tired, I just cannot find it in me to enjoy my children lately. I am being honest here. I am married and my husband helps as much as he can (cant take too many days off work) and I have great friends who come over to help when I call. I guess that I am just depressed about not feeling like going for a bike ride or to the park. I feel like I let my kids down....

I am going to talk to my ong next time I see her, I am hoping that she can put me on something to help stabilize my hormones and such. I am a Christian, very involved with my church family and talk to God daily. That is the only thing that helps right now. To pray. And thank God for all the wonderful things he has given me, to even thank Him for the cancer, that He may be glorified through it all.

I am losing alot of hair today and just feeling pretty disconnected from everyone. Though I would find a "stranger" to chat with.

God Bless.

ibcspouse

Shavon,

I am so sorry you are joining the great ladies here.  Many will be along to chat with and help with advise.  If their are any IBC questions, I or some of the others will be glad to try to answer.  I wish and pray for the best for you and your family. 

lexi4

Hi Shavon,

I was diagnosed w/ IBC Her2+ 3 years ago. I have 2 kids who were 13 and 9 yrs at the time. It was tough at times, but the txs were doable. Not easy, but doable. I was so grateful that I had my kids to keep life "normal" for me. A bit selfish on my part I guess. However, they are wonderful distractions as we go through this stinky process.

I am sorry that you are dealing with this disease, but it makes me happy to read that you can find some comfort through Christ. The relationship with Him has seen me through.

Sending you gentle hugs from CA,

Lexi

Shavoners

Hi Thanks for the note. Yes, wigs are too "wiggy" I am actually going thru my mom's (she died 3 years ago stage 4 breast cancer), I have quite a selection here I must say, but they would need some work. My husband and I love watching Joel Osteen, he is a great man of God. We seem to catch him when we need it the most. Divine intervention! I really do feel that this cup is not about me though, that it will become a witness for someone to the love and grace of my God in Heaven. Please pray that I do not fear anything as He is with me.

Thank you...very much.

Please keep in touch. 

Shavon

hopefulB

Hi Shavon, I understand you..  I was diagnosed with IBC on June 08, went thru 6 chemos that didn't work and made me miserable; and just finished radiation.  I have 2 girls: 12 and 3 years old.  I stopped working in October because I was too sick from the chemos, but I continued to have the 3 year old in day care.  That was a good decision even though I sometimes felt guilty.  However, with the daily radiation treatments, having daycare was absolutely necessary.  Now we are in the holiday's without daycare and my girls are driving me nuts - I'm in pain and don't feel like doing much.  But honestly, they keep me alive and fighting.  If it wasn't for my family, I'm not sure I would have a fighting attitude.

 So - I have 2 advice:  First: find help to care for the kids, if you can afford it, pay for daycare even if part time.  Maybe your church can help you in this area.  Remember that you need your energy to fight this.  Second: once you don't have to be with the kids all the time, savor the moments you are with them and create new traditions that don't require much physical energy from you.  One thing I have learned thru this process is that my kids still benefit from my presence, even if all we do is cuddle and read or watch tv.  I used to excercise every day, ride bikes, kayak, tennis, etc... I never though I could feel like crap and still be happy and enjoy my family.  My standards are much lower now, but I'm still very happy and blessed with their precense.

 Good luck!

Shavoners

Hi hopefulB,

 I am so sorry that you have to suffer this as well. I am learning to let go of the control and allow people to help me. I don't know why that's so hard! I feel blessed that I have so many wonderful friends around be, but mad that they are! It's insane I know. I have this gitter done mentality that is killing me right now. lol! Actually some frinds of mine spoke to their daughter's daycare about my situation and the daycare is going to pay for half of my 3 year old's tuition and she will pay for the other half. I was a stay home mom doing side jobs before this happened so we just couldn't afford daycare. My daughter's name is Delanie-Rose and she has gone tothe school 6 days over the past 2 two weeks and truely my day is easier with just the boys. And she loves her school! She calls it her prety princess school! So cute! I really have felt the God was and is with me from the begining of this. I even knew it was cancer before we knew. God being with me spiritually is amazing but it's hard to see Him manifest physically by working this out and finding a way for my girl to go to school. I know it's crazy...

So how much longer with the radiation treatments? Am I understanding that the chemo didn't do anything at all? I hate to hear that you are in pain. Are you getting meds for the pain?

hopefulB

Hi, I'm glad to hear you have a little help with the kids.  I just finished radiation on Dec 29 - they treated mostly the skin so I lost most of it.  I have it in both breasts so that's a very large area to heal.  I'm taking meds to sleep and they gave me a very good cream to speed the recovery.  I have been in pain for about two weeks now, but I'm more than half way in the healing process.  I probably have one more week to go.  Pain and all, for me the radiation is still easier than the chemo.  Hang in there, the treatments will not last forever

pokadot

Hi Shavon,

I don't have IBC (just lurking for some breast issues I've been having) but I am an ovarian cancer survivor and was diagnosed 3 years ago while my children were ages 2 and 4. (I was diagnosed at age 31). SO I definately know what it's like to have cancer and small children at the same time. I had 8 rounds of chemo, and two major abdominal surgeries. Talk about being feeling drained...

There were times that I remember I couldn't even get up to get my daughter a drink of water when she asked for it. I was a stay at home mom at the time, and had to bring in help during "chemo week" to have someone watch the kids because I couldn't do it. I don't know what made me feel worse, the chemo sickness or knowing I couldn't take care of my own children. I was one of those mothers that had to do it ALL and I had to rely on others quite a bit - it was very upsetting to me.

As I look back now, I would have had an easier time of it if I would have accepted the fact that I couldn't really control anything but getting better. The only thing I could focus on at the time was healing, and until I did so...I didn't get better. Not sure if that makes any sense to you or not, how I've written this.

I guess what I'm trying to say here...yes your kids will miss you and wish you were your "old" self....but sometimes you need to take care of yourself first before you can care for someone else. Does that make sense? I tried to do it ALL - chemo/home mom/clean the house/do it all ....and I wound up very sick and in the hospital. Because I tried to do too much, I was even further away from my family...I couldn't go on pretending that I didn't have cancer AND get better at the same time.

My daughter doesn't remember me so weak that I was unable to get her a drink of water. But she DOES cherish time with me NOW that I am better. And that's what counts...doing what you need to do to be there for your children in the long run, right? So don't feel too upset or *guilty* for taking care of yourself. You need it. The more help and support from others...the better!  

Keep your chin up.

PS I was hairless for about 18 months. It's crazy, but after awhile I actually liked wearing my wig - it was a shower and go type of lifestyle!