Question for caregivers please extreme fatigue

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Jimswife
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Re: Question for caregivers please extreme fatigue

Postby Jimswife » Mon Jan 09, 2012 12:00 pm

That's good shes now in remission, are you based in the USA or uk ? I'm in the uk . So she had the Tumor removed then did 6 months folfox ?
Victoria , Wife to Jim age 43 dx oct 2011
Stage 3 cc with 2 out of 21 positive lymph nodes
Folfox starts nov 11-may 12
All scans and bloods since surgery confirm no evidence of disease
Hoping to stay ned forever .... Fingers crossed !!!!!!!

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eitter
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Location: Tempe, AZ
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Re: Question for caregivers please extreme fatigue

Postby eitter » Mon Jan 09, 2012 12:05 pm

My mom was my caregiver and I saw her breakdown many times! But what I think helped her the most was help, any help! You HAVE to line up people that will come in and help and maybe even enough time to get a way for a day, or even a weekend! Get a Day Spa pass, do not have money for one, I bet someone can wrestle you up one! But my mom's key was time away from me and my condition and I totally understood! And this goes for men and women, men can and should get a spa day too!

As a patient, I can only speak for myself, I loved alone time and sometimes did not want someone hovering over me and a change of face or routine did me good. So do not feel like you have to be the caregiver 24/7, YOU DESERVE A BREAK!
Blessings,
Liz DENNIS
Tempe,AZ
DX 05/06 Rectal
6 Weeks radiation with 5FU
LAR 10/06 Stage III
Temp Ileo, reversal failed in 05/07 after 1m in hospital came out with a permanent colostomy
http://www.runlizrun.com

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very worried husband
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Joined: Mon Mar 28, 2011 1:20 am

Re: Question for caregivers please extreme fatigue

Postby very worried husband » Mon Jan 09, 2012 12:17 pm

Jimswife wrote:That's good shes now in remission, are you based in the USA or uk ? I'm in the uk . So she had the Tumor removed then did 6 months folfox ?


I am In Canada. Yes her tumor was removed and then she had 11 treatments for 6 months of Folflox. she did 11 treatments and then her port was blocked for the last one, so they did a clinical trial which was an oral form of a new drug..( sorry i was not with her and dont know the name...but this is what i was told by her ). we are also using the traditional chinese medicine, and so far everything looks good....Her onc also recommended Aspirin, which she started last month.
Caregiver to Wife age25
Diagnosed Colon IIIB Jan2011
7/29 Nodes +
5FU+Oxi in china. Feb-Aug 2011
CEA@Diagnose:0.79
Immunological chemistry: Ki-67 (+), MSH2(+), MLH1(++), ERCC1 (-)
NED Supplements: Aspirin,Vit D,Calcium, Genoderma Lucidium
Baby born June 2015 :D :D :)

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Jimswife
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Re: Question for caregivers please extreme fatigue

Postby Jimswife » Mon Jan 09, 2012 12:50 pm

Brilliant , hopes she continues to do well and hope you can leave cancer behind forever , my husbands doing great too , he's on round 4 of 12 folfox, no real side effects , he looks the picture of health , he walking 2 miles per day and alternating it with cycling about 3-4 miles per day , I'm juicing etc too .
When chemo is finished will continue with excercise plus asprin green tea tumeric and whatever else is said to be good for cancer , we will throw everything we possibly can at this beast in the hope that it never ever returns !!!!
Victoria , Wife to Jim age 43 dx oct 2011
Stage 3 cc with 2 out of 21 positive lymph nodes
Folfox starts nov 11-may 12
All scans and bloods since surgery confirm no evidence of disease
Hoping to stay ned forever .... Fingers crossed !!!!!!!

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very worried husband
Posts: 130
Joined: Mon Mar 28, 2011 1:20 am

Re: Question for caregivers please extreme fatigue

Postby very worried husband » Mon Jan 09, 2012 1:06 pm

Jimswife wrote:Brilliant , hopes she continues to do well and hope you can leave cancer behind forever , my husbands doing great too , he's on round 4 of 12 folfox, no real side effects , he looks the picture of health , he walking 2 miles per day and alternating it with cycling about 3-4 miles per day , I'm juicing etc too .
When chemo is finished will continue with excercise plus asprin green tea tumeric and whatever else is said to be good for cancer , we will throw everything we possibly can at this beast in the hope that it never ever returns !!!!



That is Great that your husband is feeling well. we had all sort of problems during chemo, which all is Past and hopefully will be past forever.

Walking, cycling is v good. keep it up..
Caregiver to Wife age25
Diagnosed Colon IIIB Jan2011
7/29 Nodes +
5FU+Oxi in china. Feb-Aug 2011
CEA@Diagnose:0.79
Immunological chemistry: Ki-67 (+), MSH2(+), MLH1(++), ERCC1 (-)
NED Supplements: Aspirin,Vit D,Calcium, Genoderma Lucidium
Baby born June 2015 :D :D :)

hannahw
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Re: Question for caregivers please extreme fatigue

Postby hannahw » Mon Jan 09, 2012 1:44 pm

Between stress and depression your body is probably asking "what in heck is going on here!?!" Diet and lifestyle changes may not be enough to get you over the hump. Not sure if anyone has asked, so what are you doing for yourself? It's easy when you're a caregiver to focus entirely on the patient. But you have needs too. If you apply yourself entirely to the needs of your sick loved one, eventually you'll burn out and be no good to anyone. Learning to take care of yourself while taking care of your patient and the rest of your family is one of the biggest challenges to caregiving.

Sleeping may be your bodies way of saying "I need you to take care of me." The interesting thing is that sleep itself may not be the best/only solution. What your body may need is "me" time. Do you like to take walks? Watch soaps? Read books? Chat with friends? Play bridge? Etc? Make sure you alot time for this sort of thing, whatever activities you like to do, keep doing them. It will help you stay healthy and strong. Vitamins can really only do so much. Your body has limits that won't necessarily respond to a quick fix, at least not in the long term. Taking time for yourself, difficult as it may be, is your best friend. Personally, I find that I have to schedule myself, put things on my calendar that are specifically devoted to getting away from caregiving. Doesn't have to be anything major, or time consuming. Sometimes I swim for an hour. Or get coffee with a friend. Or do a crossword puzzle. Letting your brain come out of the all consuming stress state that can be caregiving is valuable.

Physiologically, one of the things that can happen to a caregiver over time is related to the endocrine system. When your body is stressed, your immune system tends to be compromised. If your body is stressed for a short period of time, it's ok because adreneline gets you through. But for long term disease, when you're caring for someone over weeks, months, years, your immune system is compromised for an extended period and it's easy to start getting sick more frequently in spite of good eating, handwashing, exercise, etc.

So, make sure you're taking care of yourself too. You need it.
Daughter of Dad with Stage IV CC

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beccab1
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Location: Raleigh, NC

Re: Question for caregivers please extreme fatigue

Postby beccab1 » Mon Jan 09, 2012 2:30 pm

I've had trouble sleeping since I was a kid. I would be up two or three times a night, could never fall asleep, etc... When Eric was going through treatments, I slept like a baby. It was the exact opposite of what I thought would be the case. It was mental exhaustion. I did the same and got blood work done, all was well. I would suggest that you watch out for depression because that can be a big part of wanting to sleep a lot. I had a lot of physical symptoms from the stress. I ended up with a few panic attacks and had to see my doctor. Just make sure you take the time to keep yourself healthy because that is how we are the best caregivers we can be. :)
My husband, Eric, dx @ age 35
Stage IIIb RC (T3N1M0), 3/10
Finished 6 weeks rad/xeloda 5/10
Surgery 7/10, Lap LAR, Colonic J Pouch, Temp. Ileostomy
ypT2N0M0
Xelox (5 rounds)
Takedown 12/13/10
Clear CT - 2011-2015

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pmterra
Posts: 599
Joined: Fri Jul 01, 2011 6:12 pm

Re: Question for caregivers please extreme fatigue

Postby pmterra » Mon Jan 09, 2012 6:43 pm

Hi Victoria,
Shortly after Andy was diagnosed I got sick. I thought it was just an allergy b/c I do have summertime allergies. It went from that to strep throat to a sinus infection to asthma which I never had before! I was sick for almost the first four months, coughing all night and not sleeping well :( . My doctors said that my immune system was very compromised with stress being one of the big factors. I was exhausted all the time but you know you keep pushing because you want to take care of your patient. I would definitely get checked out and have blood work done. It sounds like it could be a little of everything from stress to maybe some (mild) depression? Sometimes we don't even realize we're depressed and sleeping all the time is definitely a symptom of that. You have a lot on your plate even though as you say your husband looks like the picture of health. Wondering and worrying about how this will all turn out is exhausting and stressful. I hope you start feeling more like yourself after a trip to the doctor's office. :)

Love,
Paula
caregiver to survivor husband
Stage 3C - Colon
surgery June, 2008
6 mo. chemo/FOLFOX & Avastin
June 2015 - 7 year survivor :)

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surfingon
Posts: 448
Joined: Mon Dec 28, 2009 4:11 pm

Re: Question for caregivers please extreme fatigue

Postby surfingon » Tue Jan 10, 2012 4:36 pm

Based on my own experience and having worked in the hospice field for 26 years, I suspect that this kind of reaction to being the caregiver of a loved one facing a life-threatening disease is not at all uncommon. Stress and grief can really wreck havoc on our bodies-- and manifest in some medically inexplicable symptoms.

I myself became not only completely exhausted, but had many of the symptoms a colon cancer patient might have (ones my husband did not have!). The GI doc I was referred to was convinced that I had some kind of cancer myself. Short story: it was a nightmare, but I ultimately diagnosed my symptoms as manifestations of grief, and gradually eliminated themwith a rigid diet program and a new understanding that failure to care for myself was going to result in inability to really care for and be present for my husband.

A dear friend experienced symptoms far more dramatic than mine when her husband died-- so dramatic that even her doctors were shocked. Saw a similar reaction with several of my bereavement patients who had symptoms that were never diagnosed by their doctors, but which gradually disappeared with self-care and the passage of healing time.

Bottom line: going through this is WAY more stressful than we can actually believe, which means that we tend to grossly underestimate the level of self-nurturing that we need to make it through intact. When we disregard caring for ourselves, eventually our bodies give us messages that we can't ignore. Hannahw is right about the need for "me time"-- the self-nurturing needs to be not only physical, but emotional and spiritual as well.

Blessings on your journey,
Rachel
caregiver to husband John
Stage III CC 3-05
liver+ colon resect Nov '06
FolfoxA , FolfiriA
7 liver RFA's, 1 lung RFA
died April 29, 2009
http://sheddinglightonthecancerjourney.wordpress.com/
http://sheddinglightonthewidowsjourney.wordpress.com

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blakeswife
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Facebook Username: kathy.mair
Location: Utah

Re: Question for caregivers please extreme fatigue

Postby blakeswife » Tue Jan 10, 2012 7:35 pm

I have been exhausted for a long time as well. When Blake is on treatment we make it so his "sleepy" days are on the weekend. That way, I can just rest with him!

I can tell that my worry & imagination meter went on tilt! I had every scenario imaginable mapped out in my mind. Finally, I had to seek treatment for anxiety which has helped immensely. I am now able to enjoy what we have instead of imagining what we won’t have. I'm still tired all the time, but at least my brain has slowed down! :)

Take care of yourself,
DH Stage IV 10/07
Colectomy, Liver resection & RFA, 1/13 LN
12/07-5/08 Folfox/Avastin
7/09 recurrence-Peritoneum
9/09-12/09 Folfiri/Avastin
1/10-5/10 Xeloda/Avastin
9/10-current w/built in breaks

michelle c
Posts: 1912
Joined: Wed Dec 02, 2009 3:58 am

Re: Question for caregivers please extreme fatigue

Postby michelle c » Tue Jan 10, 2012 8:18 pm

From my experience anxiety and stress can cause extreme fatigue. Make sure you see your doctor though just to have it checked.
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair


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