A Question for Caregivers

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crikklekay
Posts: 142
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

A Question for Caregivers

Postby crikklekay » Sun May 20, 2018 8:14 am

Does reality ever hit you like a ton of bricks? This week my Mom called and asked how John was doing, and while I was going over the litany of all his recent problems it was like the reality of the situation hit me like a freight train. Living through the loss of appetite, the increased nureopathy, ever decreasing platelets... It’s like I was so busy living it and working to try and make his life easier that the fact of how awful it was didn’t register? At least not until I was telling someone else.

It was surreal, one moment I was fine and the next I was crushed under the realization that I’m watching my husband waste away. After I got off the phone I probably spent at least 5 minutes crying in my car. Has something like this ever happened to you?
Caring for DH John
Stage IIIC, Lymph nodes: 6/22
Chemo: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/MSSA infected port, PICC line inserted, chest CT scan showed septic emboli & blood clots
03/18 Hospital w/CDIFF
08/18 CT Scan Clear, NEMD
2018/2019/2021 Colonoscopy Clear
2019/2020/2021/2022 CT Scan Clear
2021 PET scan & MRI show one spot on liver
08/21 Liver surgery to remove spot, confirmed mCRC. Now Stage IV
09/21 Start Folfiri + Avastin
03/22 CEA Rise, continuing chemo

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

Re: A Question for Caregivers

Postby KimT » Sun May 20, 2018 10:07 am

I am a survivor as well as a caregiver for my mother before she passed. Being a caretaker was by far the harder role.
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

FelixCat
Posts: 1
Joined: Sun May 20, 2018 10:02 am

Re: A Question for Caregivers

Postby FelixCat » Sun May 20, 2018 10:30 am

Absolutely!
Being a caregiver during chemo was the hardest thing that I have ever done.
This is the first time I have ever posted here, but I felt that I needed to reach out to you.
My husband, John was also diagnosed at 41 with stage 3C. This was last year, February 13, 2017.
Trying to keep “normal” during chemo was crazy for me, we have a daughter that still had to go to school, I still had to go to work, and I was worried sick about my husband!
I guess I just wanted to let you know that you are not alone and that I cried all the time!!
I still do sometimes, it is all so much.
But, we are just a little over eight months done with chemo and things are going well.
Stay strong, you can do this!

risto
Posts: 54
Joined: Wed Jan 06, 2016 2:28 am
Location: USA

Re: A Question for Caregivers

Postby risto » Sun May 20, 2018 10:37 am

I can totally relate.

My DW is not on hospice but at home we have an oxygen generator, which is loud but not unpleasant sounding, though it is a constant auditory reminder that my DW has pleural effusion so can't get quite enough oxygen.
She has been on TPN at home since March 1 because she barely eats anything, so we have a nurse coming over weekly to change the dressing on her PICC line. I'm the one who is doing the nighly mix and setup of the TPN pump.
Had to buy a rollator for her because she's having trouble walking, maybe because of the extra 20kg fluid she's carrying around, but also because she seems to be getting weaker. She spends almost the whole day in bed or on the sofa because it hurts less if she lies still.
Her pain is getting harder to control and she has taken to moaning and whimpering a lot.
Her mother died at home of cancer when my DW was aged 22, so the optics of the situation weigh very heavily on her.
We don't see the danger yet in the blood numbers, but since she's started FOLFOX again that may be coming.
My work continues to take me away for part of the day but I'm preparing to take leave under FMLA. I have to be careful because it is time limited, and I don't want to lose my wife and my career at the same time. So for now I shift my hours, work from home when feasible, come home during the lunch hour, etc. If she loses her ability to walk completely then that would mean someone needs to be here 24 hours a day, which would be me.
I have been having sobbing fits pretty much every day since she was discharged from the hospital on Mother's day. Though the situation demands optimism we both fear that she only has a few months left. As we keep telling ourselves...

Hang in there!
DW Dx 7/15, 41 yo, st IV, 3+ liver mets: 11.3 cm, 7cm, 3cm. MSS.
KRAS, APC, SMAD4, TP53 mut.
7/15-10/15: FOLFOX+bev. x8
11/15-12/15: SIRT (Y90)
1/16: Toxic Hepatitis, chemo break
4/16: Liver resec. fail
5/16-7/16: FOLFIRI x6
8/16: Liver resec.
8/16-11/16: FOLFIRI x6
2/17: IMRT/Xeloda x25
4/17: LAR
6/17: CT: Progression. Peri, Lung, Liver mets. FOLFIRI x6
9/17: FOLFIRI+Bev x5.
11/17: CT: Stable. 5FU+bev. maintenance x5
1/18-2/18: Surgery for SBO
5/18: ascites, acute liver injury

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: A Question for Caregivers

Postby stu » Sun May 20, 2018 11:13 am

Hi ,
During the first two years with recurrences and disappointing blows I think I lived off adrenaline . Anxiety kept me pushing forward . My mum had a series of physical changes and lost three stones in weight then gained three stones in fluid over a matter of days after her liver resection . I remember staring at her following surgery and she was yellow , inflated and struggling to communicate and I felt rooted to the spot . All I could think was she was gutted like a fish . I pulled myself together and much later I told my mum how I felt that day . I was so comforted to know she had no memory of it .
It is so tough watching too . But crying is a good thing . Sometimes it just needs to come out .
Risto ,
That sounds a lot to cope with . I just want to say I am thinking of you and can see how much strain you are under. I am sending you love and strength . I know that’s limited but I do feel for you .
Take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

mhf1986
Posts: 158
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: A Question for Caregivers

Postby mhf1986 » Sun May 20, 2018 1:48 pm

Abso-freaking-lutely. At the oddest times and the weirdest places. I get jealous watching old couples plod around the grocery. I cry in the shower. I despair because I can't fix this.
Caregiver to DH, dx @ 50, mets to liver/lungs, MSS, wild
9/16 CEA 114, blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX = hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth; Vectibex + 75% Irinotecan
7/18 CEA 23, shrinkage
10/18 CEA 28, growth of 2 liver tumors/shrinkage of few and lung nodes
11/18 Lonsurf, looking at spheres, proton, trials
11/19/18 Peace

Canada777
Posts: 62
Joined: Mon Mar 28, 2016 6:24 pm

Re: A Question for Caregivers

Postby Canada777 » Sun May 20, 2018 2:09 pm

You are not alone. It happens to me too. DH was diagnosed stage IV 2.5 years ago. In some respects I'm lucky because he stills functions quite well...but some days I'm fine and others a switch flips and I'm not and I'm crying about all that isn't fair. I find it usually happens most when I'm alone and not doing much.
DH dx. Stage 4 Colon cancer with Peri mets Dec '15 @ age 29
12 Rounds FOLFOX & then successful HIPEC in 2016. Diagnosis changed to appendix cancer.
Recurrence to pelvis 9 months later.
Years of chemo.
At rest. Sept 2021.

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: A Question for Caregivers

Postby Deb m » Mon May 21, 2018 9:09 am

I was the caregiver for my husband during his colon cancer fight. I can totally relate. I was terrified from the beginning, but never really broke down and cried till we got home from his first infusion. I pulled a you and went out in the garage, got in the car and cried my eyes out. I was on overdrive with anxiety and trying to take care of our two sons who were 11 and 12 years old at the time. For some reason that first infusion day just hit me like a tone of bricks!

It's a horrible thing to watch a loved one go thru . Hang in there!

deb m

crikklekay
Posts: 142
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: A Question for Caregivers

Postby crikklekay » Mon May 21, 2018 11:20 am

I can't say how relieved I am to hear I'm not the only one. Having a loved one be diagnosed with cancer is awful and I wish no one ever had to go through it but knowing being emotional through the whole process isn't exactly abnormal helps. Overt emotional outbursts aren't really seen as acceptable in my family so that makes it extra awkward, and I feel bad saying how hard it is when I'm not the one being pumped full of poison and dealing with the sickness itself. My husband seems to be dealing with the whole colon cancer thing a lot better than I am, haha.

FelixCat, hello to another wife of a John! I'm very lucky that we have cats and no children, I'm not sure how I would handle taking care of my John and kids! I do almost hate having to go to work, and I call him at lunch to check in. I found out last week that he wasn't eating like he should because of taste change and appetite loss and felt awful. If I was at home I could have made sure he was eating something. Congrats on being 8 months out, and I hope everything goes well!

Risto, I am so sorry you both have to go through that. I'm very acquainted with how FMLA works since John needed to have it filed three different times for three different hospital stays. We've used almost a third of the allowable benefits in the first three months of the year and I keep holding my breath and hope we don't wind back up in the hospital. 12 weeks sounds like such a long time until you need to use it, then it seems like it isn't enough. I'm not covered under FMLA because I work for a small business, but I'm fortunate that they've been understanding of our situation so far. I wish you the best, keep holding on!

Stu I know exactly what you mean, I feel like I'm nothing but a living bundle of anxiety. We had a rough start, with sepsis due to MSSA from his port which then caused a CDIFF breakout and another hospital stay and a month delay in therapy. Now his CDIFF might be back and I want to scream, we had just found a rhythm and we might have another delay. His symptoms keep getting more pronounced and it's so hard to see how all his clothes hang now. I'm also grateful that he remembers nothing of his hospital stay.

mhf1986 you nailed it completely!

Canada777 I agree, it does seem to creep up more often when I'm alone with little to occupy me, or even on my commute if I'm not listening to an audiobook and my mind wanders. Originally I vowed that this year I was going to shelve everything and just concentrate on him, but now that he's back at work and I'm spending my nights and Sundays alone I need something for me. I just need to find the energy for it!

Deb M, when we went to his first infusion I remember a feeling a dread in my stomach because it suddenly felt real. The month after the hospital stay almost felt normal, other than getting used to the ostomy. It was like he had major surgery but he would recover and things would be normal again, except that first infusion date shattered that feeling.


Thank you everyone for commenting and your support! It really means a lot to me.
Caring for DH John
Stage IIIC, Lymph nodes: 6/22
Chemo: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/MSSA infected port, PICC line inserted, chest CT scan showed septic emboli & blood clots
03/18 Hospital w/CDIFF
08/18 CT Scan Clear, NEMD
2018/2019/2021 Colonoscopy Clear
2019/2020/2021/2022 CT Scan Clear
2021 PET scan & MRI show one spot on liver
08/21 Liver surgery to remove spot, confirmed mCRC. Now Stage IV
09/21 Start Folfiri + Avastin
03/22 CEA Rise, continuing chemo

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: A Question for Caregivers

Postby Aqx99 » Mon May 21, 2018 11:59 am

I highly suggest that you find a local support group to help both you and your husband. My cancer center has a GI cancer support group that meets once a month. We often break out into separate groups so that the caregivers and survivors can speak freely amongst themselves. I have also been seeing the oncology counselor at my cancer center. She helps both survivors and caregivers.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

WarriorSpouse
Posts: 220
Joined: Tue Aug 16, 2016 9:02 pm

Re: A Question for Caregivers

Postby WarriorSpouse » Mon May 21, 2018 1:46 pm

I am sorry to read your posts and the circumstances you are encountering. With every cancer patient there is a supporting caregiver and the job is not an easy one. I read your first blog post to get an idea of your husband's timeline and diagnosis. It would be helpful to put dates (month / year) in your footer information and share a general geography as to where you guys live for treatment options and services. Many here are outside the U.S. and treatment options are different.

My suggestion is to become a purposeful advocate for your spouse and take leadership roles that may be untraditional in your current relationship. He will do the fighting and healing and you will be the engine blazing a path of success and future for your family. This starts with ensuring he has proper care. I noticed he was staged at III, but in your footer you used the words "invasion of visceral peritoneum." If this is true, he is a Stage IV cancer patient / survivor. With that, he is entitled to the most aggressive cancer treatments like Avastin and maintenance chemo after his initial treatment plan. You need to make sure this is being done with scans every 6 months to confirm that treatment is working.

Once he is diagnosed on a pathology report or doctor's review as a Stage IV patient, he may be eligible to apply for Social Security Disability benefits, if you are in the U.S. Here is the link to Social Security's Compassionate Care Program for Colon Cancer. It does take time to qualify and your husband's income will be diminished under it. I know many caregiver spouses who obtained basic fulltime jobs to support health insurance for family needs until the Medicare provision kicks in to cover the patient / survivor. I think it takes about 18 months to obtain this. Y

ou can take any local 32 - 40 hours per week job to qualify for heath insurance. It does not have to be a profession, this time away may actually be good for your mental health, because you will keep busy and have work friends. Look for a close job with benefits that keeps you busy and not stressed. Second shift cafeteria, custodial, and security jobs will keep you busy without being work stressed. It will also free up days for medical appointments and other family errands. https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022215

Lastly, make sure that you have the advice of a major caner center. Even if you get your local treatments closer to home, have the advice and consent from a major cancer center. They know what aggressive treatments will work for each patient and they have a historical knowledge that the local oncologist does not have. Be proactive, be aggressive, and be a leader! This will help you stay mission focused and will put you more in control as a problem solver as opposed to victim of your spouse's diagnosis.

This type of purpose has kept my wife alive, my purpose in her support, and many years of family memories. Always fight the thing that is directly in front of you and not what is down the road. You are in control of the six inches in front of your face. Knock it out one battle at a time and keep moving forward. Before you know it, you may have several years of family memories and decent quality of life.

Good luck and best wishes!
WS:)
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

crikklekay
Posts: 142
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: A Question for Caregivers

Postby crikklekay » Mon May 21, 2018 2:16 pm

I tried adding more information to my signature before but ran out of characters, I tried editing it down a little. Hopefully it helps?

Honestly your reply has freaked me out a little, I pulled all of the info in my signature from a summary report the Oncologist sent to his GP and it said stage 3C. I thought it wasn't stage 4 until it spread to other parts of the body? Our Oncologist is board certified and he's being treated at the local cancer institute, but I'm not sure if that qualifies as a major cancer center. Is Avastin better than Folfox 6? We have an appointment tomorrow to review his CEA and treatment, so if I can get my head to stop spinning maybe I can write down a list of questions.
Caring for DH John
Stage IIIC, Lymph nodes: 6/22
Chemo: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/MSSA infected port, PICC line inserted, chest CT scan showed septic emboli & blood clots
03/18 Hospital w/CDIFF
08/18 CT Scan Clear, NEMD
2018/2019/2021 Colonoscopy Clear
2019/2020/2021/2022 CT Scan Clear
2021 PET scan & MRI show one spot on liver
08/21 Liver surgery to remove spot, confirmed mCRC. Now Stage IV
09/21 Start Folfiri + Avastin
03/22 CEA Rise, continuing chemo

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: A Question for Caregivers

Postby stu » Mon May 21, 2018 2:50 pm

Hi ,
Oh that’s a shame . Before you start to worry I would speak to the oncologist to make sure the information is correct.
Remember my mum is stage 4 and scanning clear nine years later .
Take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Canada777
Posts: 62
Joined: Mon Mar 28, 2016 6:24 pm

Re: A Question for Caregivers

Postby Canada777 » Mon May 21, 2018 2:57 pm

Hi crikklekay - try not to freak out. Just take it one step at a time. In the beginning I went to almost all DH's appointments mainly so I could get an army load of questions answered. I literally would take a piece of paper with a list of several questions. Every few weeks I would have new questions and ask more at the next appt. Start with what your would like to know now...Maybe the following?
- what stage is he? And why?
- why was FOLFOX 6 chosen?
- is Avastin something that can be added or no?
- is he MSS or MSI ( helpful for immunotherapy options)
- talk about his symptoms and if anything can be done to improve them (we had a dietitian involved for awhile)

I often found that our oncologist was very helpful to easy my anxiety that the best was being done. In dh's case Avastin is something he isn't allowed to have although many people do. I also found out mss or msi status by asking (testing had already been done but we just didn't know the results till we asked). Our oncologist now knows we like details. Some people don't like details and don't want to know...just make sure yours knows what you prefer.

You can do this.

As a side note, yoga classes and weight training helps keep me sane. Find something you like so you can get some time to relax yourself too.
DH dx. Stage 4 Colon cancer with Peri mets Dec '15 @ age 29
12 Rounds FOLFOX & then successful HIPEC in 2016. Diagnosis changed to appendix cancer.
Recurrence to pelvis 9 months later.
Years of chemo.
At rest. Sept 2021.

tater
Posts: 133
Joined: Wed Jul 19, 2017 5:53 pm

Re: A Question for Caregivers

Postby tater » Mon May 21, 2018 5:14 pm

I am a care giver to my dear wife who was diagnosed at age 38 with stage 4 RC. Its been a hard road to travel for the both of us. I hit the wall a couple of times. You get tired of hearing things theirs normal rectal cancer than their is your cancer. We are six months NED and have scheduled her take down surgery for the end of next month. I've learned to enjoy the small things. I also remember feeling guilty once we got the NED results. It was odd I'm not sure I can explain it, but I wouldn't let my self celebrate some of the best news that I have ever received. From that I have learned to celebrate the wins. You get kicked in the teeth so much that you have to celebrate the victories no matter how small or large they are. Being a care giver is not easy you always have to have the happy face on and be there even when no one is there for you.
Hang in their and remember to take some time for you. You will need your battery recharged so to speak so you can be on your A game, because the one with cancer most times is not because of the the treatments. After all you want all of their energy going into fighting the beast.

Good luck and check in with the group. I have found some of the post here to be so helpful to recharge my battery and give me hope when I needed it the most.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 2017
Stage 4 External iliac node July 17, 2017
FOLFOX + Avistan July 18 2017 CEA 2.3
Nov 9, 2017 Coloanal Anastomosis, Hysterectomy & External Nodes Removed W/ileostomy
Clear Margins NED
CEA 1.5 12/17, 2.1 2/18, 2.3 6/18, 1.1 9/18, 1.3 12/18, 1.8 3/19, 2.5 6/19
Clear CT and MRI on 2/5/2018, 9/18 Clear Scans
Reversal Surgery 6/26/18
Small Spot on right ureter surgery 10/30/19 adhered to artery
Dec. 2 start 12 rounds FOLFIRI


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