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Old 08-04-2008, 04:46 PM   #1
Colleens_Husband
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What are the most difficult things for a caregiver?

Dear Friends:

I would like to know what pitfalls and difficulties you had so far as a caregiver. What was your most difficult moments? Did you ever feel like losing it? How did you overcome these difficulties? And finally, but maybe more importantly, what positives did you come away with from your hardest difficulties and your darkest moments?

Thanks,

Lee
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This happened to Colleen:

Diagnosed in September 2007
ER-/PR-/HER2 Neu+++ 2.1 cm x .9 cm spicluted tumor with three fingers, Stage 2B
Sentinal node biopsy and lymph node removal with 3/18 positive in October 2007
4 TAC infusions
lumpectomy March 2008, bad margins
Re-excision on June 3rd, 2008 with clean margins
Fitted for compression sleeve July 16, 2008
Started the first of two TCH infusions August 14, 2008
Done with chemo and now a member of the blue dot club 9/17/08
Starting radiation October 1, 2008
life is still on hold
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Old 08-04-2008, 05:13 PM   #2
Joe
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Lee,

Here is a link to an excellent book written by Men Against Breast Cancer:

http://www.menagainstbreastcancer.org/freebook/


Regards
Joe
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Old 08-04-2008, 09:21 PM   #3
loveher
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i dont know if you can call me a caregiver because for most of my life i've been bothering my mom and being a fussy daughter but as someone who's loved one suffers from cancer, i'd say the hardest part is not being able to make it better. no matter what i do i can't cure my mother's cancer. i can work really hard in school, i can go with her to appointments and carry all her stuff but i cant do what i want the most, to get my healthy, beautiful mom back.
darkest moments: probably being in the doctors office, hearing cold harsh words. and the thoughts that race through your head when someone you love is in surgery.
i dont know why but i've always felt like we'd make it through and we always have. i always think short term, like what can i do to help her right now? a pillow, tylenol and day by day it gets better. and chocolate that always helps me.
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Old 08-05-2008, 06:13 AM   #4
eric
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Lee,
The hardest part for me is dealing with the thought that the odds are that I will lose my wife and my kids will lose their mother who they (and I) need and love so deeply. It is a thought that I am faced with almost every waking moment and one that definitely encroaches my sleeping hours as well. I always feel like like losing it, but I can't. It wouldn't do help my kids, my wife or myself. That doesn't mean that I can't go alone somewhere and cry to myself or yell at God but when I'm done, I need to pull myself together and be there for my family (and myself).
I think what helps me is realizing that I can only try my best to educate myself and the doctors (when necessary) and do the best I can to be there for the ones I love.
The positive is the confirmation for my wife that I do truly love her and will do what I can to take care of her the best I can.
Eric
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Old 08-05-2008, 07:29 AM   #5
Colleens_Husband
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Love Her:

You truly are a caregiver to your mother. It doesn't matter what happened in the past, you are making up for everything and more right now.

Thinking short term is a wise choice. It is important to live in the moment and make the best of every single day and every single moment.

I am sorry you have to go through all of this, but i am sure in the end that you will be a better person because of all of this.

Give your mother all of our love. You and your mother will be in our hearts and prayers.

Lee
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This happened to Colleen:

Diagnosed in September 2007
ER-/PR-/HER2 Neu+++ 2.1 cm x .9 cm spicluted tumor with three fingers, Stage 2B
Sentinal node biopsy and lymph node removal with 3/18 positive in October 2007
4 TAC infusions
lumpectomy March 2008, bad margins
Re-excision on June 3rd, 2008 with clean margins
Fitted for compression sleeve July 16, 2008
Started the first of two TCH infusions August 14, 2008
Done with chemo and now a member of the blue dot club 9/17/08
Starting radiation October 1, 2008
life is still on hold
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Old 08-05-2008, 07:44 AM   #6
Colleens_Husband
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Eric:

I don't know what to say after reading your post. That was one of the bravest things I have ever read.

I can certainly relate to trying to keep everything together. You are not alone in the feeling of having to keep everything together for your family. This may be the most honorable and unselfish thing you will ever do.

My hat is off to you, Eric. You and your family are in our hearts and prayers.

Lee
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This happened to Colleen:

Diagnosed in September 2007
ER-/PR-/HER2 Neu+++ 2.1 cm x .9 cm spicluted tumor with three fingers, Stage 2B
Sentinal node biopsy and lymph node removal with 3/18 positive in October 2007
4 TAC infusions
lumpectomy March 2008, bad margins
Re-excision on June 3rd, 2008 with clean margins
Fitted for compression sleeve July 16, 2008
Started the first of two TCH infusions August 14, 2008
Done with chemo and now a member of the blue dot club 9/17/08
Starting radiation October 1, 2008
life is still on hold
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Old 08-05-2008, 05:11 PM   #7
Bill
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Loveher, like Lee has said, you are a caregiver to your mom. Don't beat yourself up or worry about what has happened in the past. I'm sure your mom doesn't. I can't imagine how tough all of this is on you, but I'm so glad that you have found this group for support. As a caregiver, whether it be a physical or emotional caregiver, or both, you must take care of yourself. If you allow yourself to get sick, or run down, or become weak, you cannot be as effective in helping your mom. Please eat as healthy as possible, get enough sleep, and walk or exercise as much as you can. Right now your mom is as worried about you as you are about her, maybe more so. If you are eating well and resting, it will show, and you can be more supportive and stronger in helping her get through this. You need to take time out for yourself, honey. I know you have so much going on right now, with school and everything, but please take time out to pray or meditate, and calm your spirit frequently. If you are strong and confident, that strength and confidence will convey to your mother and help her. And when you feel like crying or venting, please come here. We will always be here for you.
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Old 08-05-2008, 05:21 PM   #8
Bill
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Eric, you have been here alot longer than I have been, and I have always been in awe of you. Nicola used to talk about you and Caryn and what an awesome man you are. I wish I could help more, but all I can do is reiterate what I've already said. Take care of yourself first so that you can be strong to take care of others. I know you already do that. If you are not sleeping well, there are healthy things that you can do to correct that. Please feel free to PM me anytime, if you feel like it. Take care, brother. Bill
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Old 08-05-2008, 09:27 PM   #9
loveher
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Bill you sound like my mom!!! are you sure you're not my mom in disguise?

Eric, Lee and Bill and Joe you guys are fantastic! your families are lucky to have you. you guys have a lot on your shoulders and are doing such a good job. keep pressing on!

in retrospect i think i sounded a bit more pessimistic than i meant. i've had a rough couple of weeks, but i feel really blessed actually, to have a mother who's so brave and to have a so many opportunities in my future.

even though i hate this disease, ive learned a lot from going on this journey with my mom, i feel like i have a little more understanding of life than my friends and such.

honestly, i have more good memories of the past 9 years than bad memories. me and my mom have shared so many jokes and shopping excursions, good report cards, poking fun at cancer and hospitals. theres gonna be a lot more memories especially now that my brothers joined the frey.

you know how there's always that like calm period when treatment is going well? i relish those moments. i think we should really make the most out of those times.

and then theres the times when "life is on hold" well im not so good at those as you can see by my past posts. praying and going to church has been kinda helpfull.
i also have trouble going to sleep sometimes so anyone have any advice on how to keep your mind from wondering?
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Old 08-06-2008, 08:32 PM   #10
Becky
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Although I was the "patient" and not the caregiver, from the "patient" point of view - my daughters were in 8th, 10th grades and freshman in college during the worst of treatment.

Try to remember that your loved one is your mother and you are the daughter (or your loved one is your wife and the mother).

I used to tell my girls (especially my middle one - ugh!) that "I'm not dead yet and I'm still your mother".

Let your loved one be the role they are in your family. Don't take over thinking it will help them out because day-to-day, it will not.

Just my two cents from the other side.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 14 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 08-07-2008, 05:39 AM   #11
eric
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Lee, Bill and lover her, thank you.
The courage, strength, and unselfishness that's exhibited by almost everyone on this site astounds me daily. It is because of all of you that I am able to hold on to the hope that my prayers will be answered sooner rather than later.
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Old 08-09-2008, 06:22 PM   #12
harrie
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Eric, a very interesting and inspiring book I read is called Grace and Grit written by Ken Wilbur. It is written both by him and his wife that had the cancer.
It is really good that you are connected with others at this site on these issues. I am sure they can help you a tremendously and you can help others.
Wishing you and your family prayers and good thoughts. I was going to say "welcome", but I noticed you have been here longer then me!
Maryanne
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 05-05-2010, 12:57 AM   #13
pibikay
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Re: What are the most difficult things for a caregiver?

As I said when I joined the group I am a Newby my wife was detected only in March and our chikdren are settled in the US.They come down now in turns and say I must look after myself first to look after my mother.So if I start doing so I feel guilty that I amnot looking after her properly.What I think I need is courage to carry on
PBK
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Old 05-06-2010, 09:12 AM   #14
Colleens_Husband
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Re: What are the most difficult things for a caregiver?

PBK:

I like to think each and every one of us has an undiscovered well of strength and courage that we can tap into if we believe that we are going to eventually prevail.

I think enduring through these dark times is more like the 'Hare and the Tortoise' story. You don't have to make it through the end of this ordeal. You just have to make it to the end of the day. And when making it through the end of the day seems impossible, you make it through the hour or through the moment. Eventually you will grind your way through this because you are stronger and braver than you think you are.

PBK, you are going through the darkest moments right now. It will get better.

You and your family are in our hearts and prayers.

Lee
__________________
This happened to Colleen:

Diagnosed in September 2007
ER-/PR-/HER2 Neu+++ 2.1 cm x .9 cm spicluted tumor with three fingers, Stage 2B
Sentinal node biopsy and lymph node removal with 3/18 positive in October 2007
4 TAC infusions
lumpectomy March 2008, bad margins
Re-excision on June 3rd, 2008 with clean margins
Fitted for compression sleeve July 16, 2008
Started the first of two TCH infusions August 14, 2008
Done with chemo and now a member of the blue dot club 9/17/08
Starting radiation October 1, 2008
life is still on hold
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Old 05-11-2010, 01:13 AM   #15
pibikay
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Re: What are the most difficult things for a caregiver?

Thanks All
PBK
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Old 06-06-2010, 07:13 AM   #16
pibikay
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Arrow Re: What are the most difficult things for a caregiver?

This is addressed to all care givers like me.
Does the patient gets irritable a week or 10 days after the chemo and make alot of complaints.I have been facing them with equanimity and cheering her up
Can one of you let me know how to add the clinical details of my wife
Thanks all and pray to give me some strengthm
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