Parenting after surgery and during chemo

Please feel free to read, share your thoughts, your stories and connect with others!
[Ana & Alex]
Posts: 96
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Parenting after surgery and during chemo

Postby [Ana & Alex] » Tue Jun 06, 2017 12:10 pm

Hello once again fellow Colonclubers :)

Tomorrow I will complete 4 weeks after my Transanal TME with a colostomy and everyday I'm feeling better (apart from my rectal stump that is a total diva, but it's getting better).

My stoma is very well behaved and I figured out already how to dress nicely and shower comfortably with no "pocket" very well :) hell, I'm sleeping on my stomach and my bikini came today in the mail :)

Today I was able to walk to the playground with my daughter (20 Minutes walking with no problems) and watch her play with her grandpa :)

Tomorrow I will also start my Capecitabin and Oxaliplatin.

A couple of questions for you parents out there:

She weights 10 KG.. how long still do I have to wait until I can pick her up?

I'm already changing her diapers and playing a lot, I'm dressing her for kindergarten and I help her getting on the sofa or climbing into a chair and the likes.. Sometimes I feel very tired and my abdominal muscles feel very tender. Maybe it's too much but I cannot stay put when I'm around my daughter.... I lay down a little bit and I'm ready for the next round! Is IT TO MUCH?

She falls asleep with me every night and we cuddle in the morning. How did you manage physical contact with your Kids, specially because of oxaliplatin? Hugs I can phantom but the kisses? Food sharing is a no go I know... And bed linings, change often because of chemo?

Plus I would be really thankfull for any tipps or experiencies that could help with parenting in this phase..

My greatest fear is to fail my daughter... and I already feel I have so much to make up for..

Many thanks..

Stay strong,
Ana
Dx @ 29 yo. Mum (2 y.o.) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d
12/2017: Aspirin, Vit. D3, Curcumin, Multivitamin.

KimT
Posts: 695
Joined: Sat Feb 20, 2010 8:53 pm

Re: Parenting after surgery and during chemo

Postby KimT » Tue Jun 06, 2017 12:51 pm

I would probably wait a couple more weeks before picking her up. I got a pretty large hernia from doing too much too soon. Otherwise, I don't see why you can't play with her or have her climb on your lap and cuddle. Really you can resume activities as you feel able. I don't recall any special instructions while on chemo other than to flush the toilet twice after I used it. While I hugged my family plenty, I did not kiss my son during certain times in the chemo cycle. I was quite immunosuppressed and kids bring home all sorts of germs from school. During the few days my counts would be lowest, I would avoid kisses with him and remind him to wash his hands frequently.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

KimT
Posts: 695
Joined: Sat Feb 20, 2010 8:53 pm

Re: Parenting after surgery and during chemo

Postby KimT » Tue Jun 06, 2017 12:55 pm

I'm not sure how old your daughter is but I do think it is good to talk to kids about chemo and what to expect. My son was 7 when I was diAgnosed. We told him that the chemo would likely make me pretty sick and that i would be tired a lot. He took it quite well I think because he knew what to expect. He wasn't alarmed when I slept 2 days straight or spent a lot of time in bed. He's never been a couch potato but we used to watch tv in my bed and cycle just about every night.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

[Ana & Alex]
Posts: 96
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Re: Parenting after surgery and during chemo

Postby [Ana & Alex] » Tue Jun 06, 2017 1:18 pm

Thank you for your answer and experience Kim.

I'm really afraid of hernias and that is why I'm trying to hold back...

My daughter is 20 Months old, so she's having a hard time accepting that I can't pick her up or have to lay down a couple of times during the day.

I hope chemo will be a breeze, I really do.
Our relationship is suffering enough already.

Many thanks,
Ana
Dx @ 29 yo. Mum (2 y.o.) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d
12/2017: Aspirin, Vit. D3, Curcumin, Multivitamin.

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Parenting after surgery and during chemo

Postby Lee » Tue Jun 06, 2017 2:02 pm

Freddy87 wrote:I'm really afraid of hernias and that is why I'm trying to hold back....
Many thanks,
Ana


NuHope makes a special hernia support belts for ostomy people. You might want to check them out.

http://nu-hope.com/

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Stewsbetty
Posts: 170
Joined: Thu Jul 14, 2016 7:08 am

Re: Parenting after surgery and during chemo

Postby Stewsbetty » Tue Jun 06, 2017 5:08 pm

My kids were older but I continued lots of hugging,kissing and cuddling throughout my chemo. I just refrained if they were visibly sick. I did remind them to do lots of handwashing. I think maintaining lots of physical contact is important because there are so many other areas that change. I wanted them to still feel my love through touch though I wouldn't have energy to do some of the other things we were used to. Do be careful of your body though and allow it to completely heal. :)
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda scans every 3 months showing shrinkage and stability
November 2018 CT shows only 1 small tumour left
September 2019 clear CT finally NED!!!

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Parenting after surgery and during chemo

Postby MissMolly » Tue Jun 06, 2017 6:31 pm

Freddy:
You are fortunate to live in the U.K. and have proximity of access to the best ostomy undergarments available - ComFizz.

I have mentioned this family owned business before and will praise it again. ComFizz has won several awards by the U.K. NIH for its product design, quality, and innovation. Options include briefs, camisoles, belly bands, and specific hernia support bands. The garments are composed of a spandex and Lycra weave and are seamless. The garment offerings are designed solely with those with an ostomy in mind.

ComFizz has a retail store in the U.K. where it also offers personalized fittings and educational classes and seminars.

I have been wearing ComFizz garments for 4.5 years and am a loyal customer. The garments are soft and wonderfully comfortable. My favorite item is the women's camisole. I am also a faithful wearer of the women's boy shorts and belly band.

For individuals in the United States, the company has knowledgeable telephone and internet support staff that can assist you with selection and sizing. Shipping is through the postal service and takes about 10 days to arrive. Exchanges and refunds are promptly handled.

Freddy, a belly band would probably give you a perfect blend of light inward pressure (onward pressure to counter the outward force gradient of the abdominal organs/intestines) and somatosensory reminder not to "over due."

ComFizz is located right in your neck of the woods. You would be remiss not to give the ComFizz product selection a cursory browsing.

http://www.comfizz.com

But why I really want to write to you in response with a post . . .

In your writings I sense a continued theme that you somehow feel that you are marginalizing your toddler daughter's needs . . you somehow feel that are less than the full mother that your daughter needs due to your recent surgery and health constraints.

I absolutely do not believe this to be the case.

I would encourage you to adopt internal dialogue that supports a higher sense of self.

You are in no way under-serving your daughter. You are everything your daughter needs, and more.

Life is not always easy. There will be bumps and potholes and mountains. Indoctrinating your daughter to the true pulse beat of life by showing her your own vulnerabilities and needs (needs for rest or private time to recharge your personal batteries, as examples) is not doing her a disservice. Your daughter will learn valuable life skills in your honest portrayal of illness and recovery.

I grew up in a family with a seriously disabled older brother (refractory grand mal seizures and spasticity since birth, later malignant brain tumor). The focus of my parents' attentions were directed to my brother, and rightly so.

I acquired valuable life skills through my brother. Skills that have served me well throughout my life. Empathy. The gift of self in serving others. Honesty. Truthfulness. Reciprocity. Being genuine without false pretense. The vital importance of family.

You daughter needs in you - as her mother - the knowledge that she is safe and secure. She needs your unconditional love so that she can develop a solid sense of self.

That you cannot be with your daughter every moment due to recovery issues or that you somehow have to make up for the time that you were in the hospital is an unrealistic benchmark that you are placing on yourself.

Showing your daughter that you practice self care is a powerful way to model positive behaviors for her to adopt in her own self development.

All to say . . You have nothing that you have to "make up" to your daughter in terms of time or opportunities that may have been lost in your surgery and recovery. This is real life, not a fairy tale story. Taking care of You must be a presicident - in order for there to be a strong and solid You to take care of your daughter. An ever-evolving balance, of sorts.

Honestly, you are doing an awesome job. I hope that you can see in yourself the awesome job that those around and who know you see.
- K -
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

Basil
Posts: 275
Joined: Thu Mar 16, 2017 12:33 pm

Re: Parenting after surgery and during chemo

Postby Basil » Tue Jun 06, 2017 9:22 pm

My kids are now 6 and 9. I'm on round five of FOLFOX and interact with them the same as before (less the fucking exhaustion days). If they were sick I'd avoid touching them but otherwise my onc said "act normal, but wash your hands a lot." So far, so good.

And this may be bad advice, but at twenty months I'd be picking that little girl up all the time. She can't be north of about 20 pounds. Worth it.
40 y/o male (now 46), kids 11 & 14.
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear
3 year scans - clear
4 year scans - clear
5 year scans - clear (considered cured)

Achilles Torn
Posts: 141
Joined: Fri Dec 16, 2016 2:41 pm

Re: Parenting after surgery and during chemo

Postby Achilles Torn » Tue Jun 06, 2017 10:25 pm

I have three boys who were 3, 5 and 7 when I had my surgery in December 2016. The littlest was 40 pounds and I couldn't pick him up for about 2-3 weeks. Only you can judge about picking up your child. If it feels like you are straining too much then take a week break and see. You can still cuddle and kiss from what my Oncologist told me. Lots of hand washing for sure, avoid drink and food sharing as you say, and if they are actively sick do your best to stay away (my experience this is almost impossible). I have picked up 2 viral infections from them while on FolFox one was really nasty and ended up hammering me for 3 weeks which morphed into a tooth infection probably because of my weakened immune system.

I'm such a sucker for my kids I know I can't stay away. But when they or I am feeling sick I just sit on the floor of their bedrooms and sing to them or read a book from a few feet away every night that I can. For you with a 20 month old it is a little tougher not to always be close...I remember my 3 year old was so excited when I could pick him up again....actually a few weeks later so was my 7 year old.

If you are like me our children are the Joy in your life. Keep as close as you can but a few days or weeks here or there won't ruin your bond with them.

Hope that helps
AT
Diagnosed as 40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX + Bevacizumab Commenced Jan 9/2017 PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks.
Progression after Covid19 induced break June 2020. Resume Maintenance chemo of Capecitabine and Bev

[Ana & Alex]
Posts: 96
Joined: Tue Feb 14, 2017 5:14 pm
Location: Austria

Re: Parenting after surgery and during chemo

Postby [Ana & Alex] » Wed Jun 07, 2017 9:29 am

Thank you all so much for your answers, they provided me with great insight and a feeling that I really am not in this parenting-while-doing-chemo-endeavour alone..

Lee: I took a close look to the nu hope belts, and they really seem superb. My surgeon and stoma nurse are against that I use a stoma belt, only when straining which I already do comfortably when my colostomy is taking a break.

Missmolly: I live in Austria and I have access per post to all products of Comfizz, I am waiting on a belly band and looking foward to it. I also bought shapewear from Triumph and they are very comfortable (a couple of sizes larger as my own) and very pretty as well :oops:

It is true that my daughter is my week spot. I am a perfectionist by nature and it comes very hard sometimes not doing the things how I believe they "should" be done because of this disease. I know that is something I need to learn. To accept. To tolerate. I am learning...
It is incredible that you don't know me and yet where able to put the finger direct in one of my biggest weaknesses. Self care as a parent always has been secondary to me since my daughter is here. But I know now that I have to balance it better - and that will be better for both of us as well. Because all of those things that you've learned from your brother and family, these values, are what makes us who we are in life - and I want to pass that on to my daughter. Thank you so much for the moment of reflection....

AT: that helps.. a lot! Thank you so much! If you have 3 children to manage I'm sure I'm gonna be up to the task of managing my little tasmanian devil eheh. And what you said about not damaging the parent-child bond reassures me that everything will be alright so long my daughter feels the love I have for her, no matter the condition I'm in.

Basil and Stewsbetty: I will start picking her up in 2 weeks top! She's 10 KG so 22 pounds :) physical contact goes a long way telling a child how you care for her, so laying or sitting down, I'm definitely investing a lot in it. :) :)

Felling better, ya'll... thank you! :P

Stay strong,
Ana
Dx @ 29 yo. Mum (2 y.o.) & Wife

12/2016: Rectal AdenoCa G2. CEA 4.3. RAS Wild. MSS. IIIB.
01 - 03/2017: 28 RTx + CHT 2,5 g/d Capecit.
03 - 06/2017: Suplemments and Cimetidine.
05/2017: TME/TAMIS + permanent Colostomy CEA 0.5
05/2017: ypT2N2aM0 (4/15), good cCR, limited pCR
06 - 8/2017: 4x CapOx 3,5 g/d (2x Oxi reduced to 80%)
09 -11/2017: 3x Capecit. monotherapy 4g/d
12/2017: Aspirin, Vit. D3, Curcumin, Multivitamin.

User avatar
GreenLakeGirl
Posts: 777
Joined: Mon Jan 18, 2010 5:55 am
Location: Pacific NW

Re: Parenting after surgery and during chemo

Postby GreenLakeGirl » Thu Jun 08, 2017 1:53 am

My daughter was a little bit older when I had my ostomy surgery (she was about 30 months), but since she was also potty-training at the time, I had her "help" me with my bag changes. I would bring a step stool into the bathroom, line up my supplies at her level, and let her be my assistant who handed me what I needed next. It was a wonderful way to bridge the gap of our weird bathroom needs. She's 9 now and doesn't remember any of it, but I remember the help fondly.

Hugs to you.
2009, age 37 with a 2yo: CC, IIIB (T4N1M0). IBD history
2010-11: FOLFOX, 12 rounds. 5 surgeries (3-step Ileal j-pouch, infection, VATS)
Currently NED.
Mom, you can go the hard way if you want, but the easy way is much easier. ~my 3yo


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



Who is online

Users browsing this forum: No registered users and 134 guests