Caregiver overload

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
cmewrrie
Posts: 168
Joined: Fri Mar 13, 2015 9:03 pm

Caregiver overload

Postby cmewrrie » Tue Jun 23, 2015 9:15 am

Not sure what I will end up titling this post. Not even sure if I am looking for answers, responses or encouragement, or to just get my feelings out in a place where I am pretty sure someone will understand even if I can't find the right words to express them.

As a caregiver I find myself in this place of helplessness and fear and yet at times I feel determined and hopeful as I read the stories you all share here.

Its been a rough week. DH has three more radiation treatments to go. They had to stop the xeloda because he was getting too sick and losing weight to fast. On the one hand I am glad he doesn't have the nausea to deal with but at the same time I am afraid of going without that extra treatment.

He has been having a lot of pain from the radiation...not just the razor blade bm's but terrible bloating, rectal spasms, hip and back pain. Even the narcotics aren't helping much. As his wife I just want to help and there is little I can do.

Then there is the fear that sets in as we near surgery, follow up scans, etc.

The tumor is low so we have now been referred to another surgeon in hopes of avoiding a permanent ostomy. While I have come to understand an ostomy is not the end of the world, emotionally, DH just isn't able to go there yet...it worries me, as does the flip side of possible complications of a reversal down the line. I pray that we are in good hands.

And of course the fear that I dare not entertain often...what if treatment doesn't work..we are fortunate to be currently dealing with stage 2 and I am so thankful because I know it could be a lot more difficult. But the unknown haunts me at times.

Few, if any people in my "real" life would really get any of this so I really don't talk about it much but I just feel like I need to get it out today. Its difficult to keep it all bottled up in my head.

I really hope and pray post radiation healing is quick and we get a few weeks of semi-normal to recoup and recharge before the next big battle we need to face with surgery. We both want to give our children a little bit of "normal" summer if we can and spend some quality time with them.

thanks for reading if you got this far.

My thoughts and prayers are with you all as well...I don't know where I would be without this place to come and hear from others who understand and are in the trenches or have been there themselves.
wife of DH (04/24/15 dx: age 43) Low RC T3N0M0 stage 2
4/27/15 clear CT
5/18 - 6/25 chemo/rad (ended xeloda on 6/19 due to side effects)
8/12/15 - ULAR scheduled - APR performed due to location - path showed T1N0M0
9/25 begin 5 rounds of xelox
10/30/15 - switch to xeloda only due to allergic reaction
1/22/16- last xeloda!
3/27/16 - post treatment CT - clear except soft tissue presacral area (possibly scar tissue) CEA .5
4/20/16 - post treatment colonoscopy

kathybrj
Posts: 51
Joined: Tue May 06, 2014 1:33 pm
Location: Graham NC

Re: Caregiver overload

Postby kathybrj » Tue Jun 23, 2015 9:59 am

It's not easy- but just keep breathing! Letting your mind work way far ahead is normal I think. I have to tell myself to rein it in a bit just so I don't go dashing off into the scary thoughts. Deep breaths and "one day at a time" have helped me.

I'm sorry for everything you're going through.
Blaise (DH) dx 3/31/14 (age 49)
Stage IIIb Rectal - 4 lymphs involved
Xeloda and Rad 5/5/2014
Surgery 7/29/14 Illeostomy Placed
FolFox 9/11/2014 x 9 treatments
Reversal 1/27/15
NED 9/29/2015
Kathy-Caregiver

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

Re: Caregiver overload

Postby JudeD59 » Tue Jun 23, 2015 10:28 am

I've been worried about you for a bit now. As the one with cancer, I would hate to see my husband stress about my symptoms and side effects as much as you have. It's obvious you love your husband a great deal, but you have to take care of yourself, too, and accept that having cancer means there are some unpleasant things you won't be able to fix or take away. I wish you could and if loving the patient enough could will them away, your husband would have no pain or problems, but unfortunately, it doesn't work that way. It's good to try to find help for the things he's going through, but it's also important to accept that you won't always be able to. It sucks, but that's just the way it is. If it was my husband who was sick instead of me, I'm sure I would be as anxious as you are and working as hard to find relief for him. I respect that, but I still worry about you. I'm sending virtual hugs your way.

I finished radiation/Xeloda a week ago. I had to miss a couple of doses of Xeloda because of a fever over 101. They stopped it while they tried to figure out what was causing the fever. I imagine a lot of patients miss a couple doses here and there because they forget or fall asleep or feel too ill or whatever.

I had the tailbone pain, the rectal spasms, the butt cheek pain, etc. The tailbone pain is getting better. The rectal spasms have stopped altogether. My butt muscles are still a little sore, but not too bad. Just hang in there a couple more days and he'll start to feel better.

My nausea is gone for the most part. I'm not even taking nausea drugs anymore. My appetite has increased a bit and I'm starting to eat more normally. Still small meals but more variety.

When I had abdominal surgery back in 2010, I was told in advance by the surgeon that I would have two tubes coming out of my lower abdomen attached to drains (plastic bottles basically) and they would stay in for two months to collect excess abdominal fluid that was produced in the healing process. I was totally freaked out by this and dreaded it more than the surgery. But, it happened, I got used to it, I learned to deal with it, and it became no big deal. I had it again after my surgery in 2012.

If your husband has to have a permanent ostomy, he will probably dread it a lot beforehand, be a little overwhelmed by it at first, and hopefully, adjust to it eventually and be glad the cancer is gone. Try to enjoy the time in between radiation and surgery and not worry what's to come. I'm not freaked out by the surgery, but I'm terrified of the infusion chemo. I'm trying very hard to just enjoy this time when I feel pretty good and not worry about what the future holds. I hope you and your husband can do the same.

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

Val*pal
Posts: 860
Joined: Sun Feb 10, 2013 1:24 pm
Facebook Username: Valerie Barkus Kantner
Location: Metro Detroit, Michigan

Re: Caregiver overload

Postby Val*pal » Tue Jun 23, 2015 11:43 am

That feeling of helplessness is the worst. I'm so sorry that both you and your husband are experiencing such a rough time right now.

As others have mentioned, you need to find some way to de-stress so that you are able to help your husband now and following surgery. It may seem selfish, but you need to find a way to do something fun that can divert your mind at times. I know it's hard because your husband is suffering, but you need to stay in optimal form to be a good caregiver. As someone else posted, it sucks to see anyone suffering, but there isn't anything you can do except vow to remain strong.

It sounds like your husband's diagnosis is very promising. Keep focusing on that since it is something to get you through this.

(((Hugs)))
DH dx'ed May '11, age 62
Jul '11: resection Stage IV
10/11: 6 mo Folfox
8/12:thyr canc, surg/tx
2/13: peri mets
2/13: Firi/Avas
6/13: Ok
8/13: break
10/13: Lung, peri, mets
10/13: Firi/Erb
1/14: Erb Fail; spread
5/14: Tx stopped
6/20/14: At rest

Sams wife
Posts: 749
Joined: Sun Jan 11, 2015 2:49 pm

Re: Caregiver overload

Postby Sams wife » Tue Jun 23, 2015 2:52 pm

My husband got down to 114 lbs. I had been telling them for 3 wks he had thrush or yeast. They just kept blowing me off. His stomach cramps were terrible. I told him not to take magic mouthwash & tell them he's not gonna do treatment.
I had even taken pics in & 3 nurses said yeast. Not the chemo nurse tho. Well she saw thrush that day, didn't do chemo. Gave him iv fluconazol. His belly cramps quit immediately. He was able to eat again.
Idk. Nurses just kinda stayed away from me after that. But they checked him every time.
I just wanted that out there. I know most of what u are feeling. Surgery was 2 wks ago. I just need to update stuff. St II a T3N0M0. But they haven't given us pet scan. I'm not happy about that either. Good luck.
I really know how u are feeling
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

MSJC
Posts: 158
Joined: Sun Jan 26, 2014 10:31 am
Location: Ashland City, Tn.

Re: Caregiver overload

Postby MSJC » Tue Jun 23, 2015 5:53 pm

I'm pretty sure I can relate to how your husband is feeling. Radiation/chemo, upcoming surgery, dreading an ostomy, etc. is all so overwhelming. I'm not even sure that I can offer any words of comfort, other than to say, several of us here have been in your shoes and made it through. I won't sugar coat anything...it is very tough and there are times when you are down, fall apart and just want to give up, but somewhere deep inside you have to find the strength to pull it all together, get back up and make it through just one more day. Wishing you comfort and strength through all of this.
Mike, 49 y/o at Dx 1/14 stage 3c
low rectal cancer 7 nodes positive
2/14 5 weeks chemo/rad. 5-fu
4/14 Lar gallbladder removed,
temp ileostomy
5/14 8 rds Folfox
10/14 reversal surgery
5/15 clean colonoscopy
6/15 clean ct scan

Danieljt
Posts: 309
Joined: Sun Aug 10, 2014 10:32 pm

Re: Caregiver overload

Postby Danieljt » Tue Jun 23, 2015 9:22 pm

Myself being a stage 4 and my husband being a stage 3 cancer patient, I see both sides of the coin.i worry about my DH and the things that could go wrong with his treatment and try to keep his spirits up. Also try not to worry him about my problems. I just live one day at a time and take things as they come. If I worried about everything I would be nuts. Hang in there and just love your husband everyday. Make time for yourself and enjoy some of the things you love to do.
Jackie
70 male stage 3b cc
Dx 5/9/14
Resection 7/1/14
dx 9/14
65 yr wife DLCl
Sct 3/21/19 Ned last 8 mo.

Danieljt
Posts: 309
Joined: Sun Aug 10, 2014 10:32 pm

Re: Caregiver overload

Postby Danieljt » Tue Jun 23, 2015 9:22 pm

Myself being a stage 4 and my husband being a stage 3 cancer patient, I see both sides of the coin.i worry about my DH and the things that could go wrong with his treatment and try to keep his spirits up. Also try not to worry him about my problems. I just live one day at a time and take things as they come. If I worried about everything I would be nuts. Hang in there and just love your husband everyday. Make time for yourself and enjoy some of the things you love to do.
Jackie
70 male stage 3b cc
Dx 5/9/14
Resection 7/1/14
dx 9/14
65 yr wife DLCl
Sct 3/21/19 Ned last 8 mo.

User avatar
cmewrrie
Posts: 168
Joined: Fri Mar 13, 2015 9:03 pm

Re: Caregiver overload

Postby cmewrrie » Wed Jun 24, 2015 4:33 am

Thank you all so much for your words of support and understanding and encouragement.

Just knowing you all are here and understand is a tremendous help.

So thankful to have connected with you all.
wife of DH (04/24/15 dx: age 43) Low RC T3N0M0 stage 2
4/27/15 clear CT
5/18 - 6/25 chemo/rad (ended xeloda on 6/19 due to side effects)
8/12/15 - ULAR scheduled - APR performed due to location - path showed T1N0M0
9/25 begin 5 rounds of xelox
10/30/15 - switch to xeloda only due to allergic reaction
1/22/16- last xeloda!
3/27/16 - post treatment CT - clear except soft tissue presacral area (possibly scar tissue) CEA .5
4/20/16 - post treatment colonoscopy

jjlist
Posts: 654
Joined: Fri Jan 21, 2011 11:56 pm

Re: Caregiver overload

Postby jjlist » Wed Jun 24, 2015 5:06 pm

I had a temp iileostomy after my surgery. My dr really really wanted to avoid the colostomy . Well reversal to my rectum, I would say has not been successfull . Other than I do not have a colostomy. I am starting to think maintenance of a colostomy while not easy, still would have given me better QOL. Now I have had complications, and that surgery will be a tough recovery for me. And I am concerned there is too much irradiated scarred damaged tissue down there the surgery might cause new. Complications. Make sure your surgeon is a board certified cool rectal surgeon, and he has done this before. My surgeon was not. Sadly I didn't k ow about certification. Now I can't be sure my surgeon screwed up , but sometimes I wonder.
age 56
11/16/09 DIAG low rectal tumor ST II T3N0M0
12/21/09 chemopump radiation
3/18/10 suregry colo-anal anastomosis, no nodes,.
4/29/10 Abcess infection
6/3/10 started 12 folfox sessions completed 10.
1/11/11 ileostomy takedown

User avatar
cmewrrie
Posts: 168
Joined: Fri Mar 13, 2015 9:03 pm

Re: Caregiver overload

Postby cmewrrie » Wed Jun 24, 2015 7:21 pm

jjlist wrote:I had a temp iileostomy after my surgery. My dr really really wanted to avoid the colostomy . Well reversal to my rectum, I would say has not been successfull . Other than I do not have a colostomy. I am starting to think maintenance of a colostomy while not easy, still would have given me better QOL. Now I have had complications, and that surgery will be a tough recovery for me. And I am concerned there is too much irradiated scarred damaged tissue down there the surgery might cause new. Complications. Make sure your surgeon is a board certified cool rectal surgeon, and he has done this before. My surgeon was not. Sadly I didn't k ow about certification. Now I can't be sure my surgeon screwed up , but sometimes I wonder.

I am so sorry to hear of your troubles. Our original surgeon actually just referred us out to a certified colorectal surgeon for Just those reasons. It means we will need to travel for surgery but I'm hoping that it ends up with the best outcome.
wife of DH (04/24/15 dx: age 43) Low RC T3N0M0 stage 2
4/27/15 clear CT
5/18 - 6/25 chemo/rad (ended xeloda on 6/19 due to side effects)
8/12/15 - ULAR scheduled - APR performed due to location - path showed T1N0M0
9/25 begin 5 rounds of xelox
10/30/15 - switch to xeloda only due to allergic reaction
1/22/16- last xeloda!
3/27/16 - post treatment CT - clear except soft tissue presacral area (possibly scar tissue) CEA .5
4/20/16 - post treatment colonoscopy


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: kaloy85 and 2 guests