Advice for caregivers

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dliu
Posts: 3
Joined: Sun Jun 03, 2018 7:16 am

Advice for caregivers

Postby dliu » Wed Jun 06, 2018 4:26 am

Dear all,

I am a caregiver to my mum. In May she was diagnosed with stage IV CRC with multiple, large liver metastases.

Ever since her diagnosis, I have been trying to find resources online that would be informative without filling me with dread, and this forum has proven to be one of the only positive places around. I am in awe of your bravery. Thank you for that.

She had been tired for a while but doctors thought it was due to a stroke she suffered in March 2017. In February 2018 she started having bowel troubles but attributed it to a stomach bug that was going around at the time. In late March, she had a CT scan that showed what was described to her as a polyp in the sigmoid colon, as well as several lesions to the liver.
She had a sigmoid resection a week after, as she was risking gastrointestinal perforation - the surgeon did an excellent job and apparently removed the tumor (6/11 LN affected) but he inserted a PAC without permission and after the surgery took myself and my brother on the side, telling us about the gravity of the situation. This was the first time we heard it was cancer and as you can imagine it was devastating. He told us to keep the secret to get my mum to full recovery. He didn't tell her he knew for sure for about a month, when he got the results, by which point he really downplayed the liver issue, saying he didn't know for sure if there was anything there. The oncologist at that same hospital played along, saying there was a tiny nodule in the liver. (My mum found out consequently, from the papers they gave her, that it wasn't this way - which I think had as much - if not more - of a psychological toll). On the whole, as grateful as we are for the operation, we feel the situation wasn't dealt with in the most tactful manner.

We went to see another oncologist. He seems very reassuring and started her on a Folfox + Avastin regimen which is meant to go on for 3 months (6 months if we see some results). My mum's first cycle was on Monday, May 28th, and her side effects started late (Friday/Saturday/Sunday) and she slept a lot - She was feeling very well this past Monday, but yesterday she went out for a couple of hours, got completely tuckered out, and today she seems to have a slight hint of fever, which obviously I'm starting to freak out about.

I live abroad with my husband but I've relocated since her operation. The financial pressure of having to pay rent in another country and trying to find jobs here to make ends meet, on top of my mum feeling the way she does and me being on my own here, is taking its toll. I want to do right by her and I try to preempt her needs and leave her her space. I don't want to be an overbearing caregiver, but I end up worrying a lot, especially as she is a pessimistic person. She hasn't really felt depressed since her diagnosis, but I'm always wondering what to say to her for reassurance, seen as I have had no reassurance myself (my brother also depends on me for reassurance, despite being older). She is much braver than me, so she is not scared in general, but she is worried about chemo taking up all her energies and making her feel poorly. Any advice would be most welcome.

I thank you all for hearing me out, and I wish you a very peaceful week
Caring for my mum, who had a sigmoid colectomy after CT scan (which also evidenced multiple liver mets)
09/05/2018 diagnosed Stage IV, 6/11 LN
28/05/2018 First round of FOLFOX + Avastin

WarriorSpouse
Posts: 107
Joined: Tue Aug 16, 2016 9:02 pm

Re: Advice for caregivers

Postby WarriorSpouse » Wed Jun 06, 2018 10:47 am

I am sorry to see and read of your family circumstances. Being a "good caretaker" involves being good to yourself too. Make sure you have your own feet on the ground and be honest in what you do and discuss with your Mum and brother.

Cancer is a reality that involves being factual and deliberate in your assessments and actions. I know it is difficult to conceal the emotional side of the position you are all in, but your Mum needs an honest advocate for her care. There are many who came before us in written form on these blogs. Use the search engine to read and learn from those who lived through it and are currently working through it. Use that knowledge to support your Mum's treatment plan ahead.

God speed in all of your efforts moving forward.
WS
Spouse of wife 47 years old
10/2014, Stage IV Metastatic CC
Lymph node involvement 12/15, w/ positive PET on para-aortic lymph nodes.
5 cm sigmoid tumor resection as well as positive Virchow lymph node.
KRAS mut, Highly Differentiated, Lynch Negative
Folfox and Avastin 1 YR (Oxi for 5 months) NED 05/2015
Zeloda and Avastin since 01/2016
Chemo break 03/2017, back on Zeloda and Avastin 04/2017.

"...Perseverance is not a long race; it is many short races one after the other."
-Walter Elliot

dliu
Posts: 3
Joined: Sun Jun 03, 2018 7:16 am

Re: Advice for caregivers

Postby dliu » Thu Jun 07, 2018 4:24 am

WarriorSpouse wrote:I am sorry to see and read of your family circumstances. Being a "good caretaker" involves being good to yourself too. Make sure you have your own feet on the ground and be honest in what you do and discuss with your Mum and brother.

Cancer is a reality that involves being factual and deliberate in your assessments and actions. I know it is difficult to conceal the emotional side of the position you are all in, but your Mum needs an honest advocate for her care. There are many who came before us in written form on these blogs. Use the search engine to read and learn from those who lived through it and are currently working through it. Use that knowledge to support your Mum's treatment plan ahead.

God speed in all of your efforts moving forward.
WS


Thank you for your kind words. I wish you all the best!
Caring for my mum, who had a sigmoid colectomy after CT scan (which also evidenced multiple liver mets)
09/05/2018 diagnosed Stage IV, 6/11 LN
28/05/2018 First round of FOLFOX + Avastin

crikklekay
Posts: 25
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: Advice for caregivers

Postby crikklekay » Thu Jun 07, 2018 10:07 am

I'm sorry to hear about your mother, and as a fellow caregiver I completely understand where you're coming from. You are an amazing person to relocate from another country to help take care of your Mom, she's very lucky to have you!

I can be a bit of an overbearing caregiver, I'm constantly calling my husband from work to make sure he's taking his meds and to see how he feels, but it doesn't seem to bother him thankfully. Our cancer center is fantastic and gave us a lot of tools to use, like a 24-hour helpline and pages of information on what to expect. They loaded us up on prescriptions preemptively so if he started having bad nausea/diarrhea/etc suddenly he could treat it right away. They told us to buy a certain lotion for his feet and hands and what to do if he started to get mouth sores. Having all of that information up front helped me to feel prepared, so when his symptoms started presenting themselves I was ready to react. It might help you as well if you're able to acquire a similar kit for your Mom just in case she needs it so you know she's covered.

As for the fever, I believe they told us not to worry about low-grade fevers unless they were over 100.5 then we were to call for advice on how to proceed. Chemo takes a toll on your immune system so it's always best to watch out for possible colds/infections/etc. I would ask her to take her temperature twice a day and keep a record of it so she can share it with her Oncologist, and if you have any worries feel free to call the Oncologist yourself. During the first couple of months, I was constantly leaving messages with questions and concerns.

When starting Folfox 6 my husband would feel fine until the day after the pump was removed which was Friday like your mother, but he bounced back after a couple of days. Unfortunately, as the treatments go on the effects will start to come earlier and stay longer. He just finished treatment 8 out of 12 and now he starts to get fatigued on Wednesday and starts to feel a little better on Saturday, but he tells me now he stays a little tired for the following week. Not enough to keep him from working or going out, but just enough that he feels a little off. Everyone is different so her experience may be completely different from my DH, and he isn't on Avastin so I'm not sure how that may change things. Maybe someone else who has that combo can give you a better idea. Things she may need that no one talks about is just someone to come by and help out. Someone to do the laundry, or the dishes, or mow the lawn (if she has one). It's surprising how quickly things back up on everyday things when you just don't feel up to doing them.

As for you, remember to sleep. Remember to eat. Take time to try and get your mind off things, whether that's working on a hobby or exercising or just watching a favorite movie. This is a long hard road and you have to remember to take breaks. If you don't have anyone to talk to reach out to us on the board. It is exhausting putting on a brave face for friends, family, and coworkers all the time and sometimes it helps just to vent to people who know what you're going through.
Caring for DH John, 41
DX: Colon Cancer, Sigmoid colon
Tumor type: Adenocarcinoma
Tumor grade: G2, Moderately differentiated with invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6 out of 22 sampled.
Ostomy surgery: Colostomy
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
2/18 Hospital with MSSA infected port, PICC line inserted
3/18 Hospital with CDIFF
Chest and Abdominal Scans Clear So Far

emkaye
Posts: 18
Joined: Tue May 22, 2018 1:37 am

Re: Advice for caregivers

Postby emkaye » Thu Jun 07, 2018 12:49 pm

I know how you feel. My mom was just diagnosed herself. My father does not get around well so I have been the one taking her to all her appointments and was the only one there with her when the doctor dropped the "cancer" bomb. I feel for your situation and the way it was handled by the medical profession.
I remember waiting with my mom in recovery following her colonoscopy. She was giddy and silly from the anesthesia. We were joking around until the doctor comes in and tells her point blank you have a tumor and it's cancerous. I felt my gut drop to the floor. Not at all what we were expecting. He promptly left but then the nurse and anesthesiologist stuck around and talked to us for some time. They were very compassionate and made us feel better.
I have tremendous respect for you that you are able to relocate from another country.
I only echo what others have said. Take care of yourself and recognize your own limitations. Make sure YOU have supports for yourself when you need it.
Prayers to you and your mom!

User avatar
LPL
Posts: 385
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Advice for caregivers

Postby LPL » Thu Jun 07, 2018 2:57 pm

Hi dliu
I’m a caregiver. But a wife not a daugher so it may be different. But I belive that all caregivers feel helpless at times - not knowing what/the best way to behave.
When it happens you want it to be untrue. It is a ’family crises affecting everyone’. You want to wake up next morning and learn it was just a bad dream. !!
Your situation is special since you have moved from your home environment and country!! Your own safety net and comfort is far away. I do not know, maybe not.. but perhaps it can compare (a little) to being in a country where your 1st language is not spoken (like for hubby & me) is that somewhat alike? At least you have an added complication as a caregiver the same as I had. Translating surgery & pathology reports from a 2nd language is frustrating! (Please forgive me if I use the wrong words - English is not my 1st language).
As many members have said here: do not forget to take care of yourself. (Easier said then done. But if you know it is important you might succeed.). I think that your mother will feel if you are ok or not.
Can you talk to & involve your brother more? Maybe get help with talking to/involving him so that he can be a carepartner and lessen your burden? I wish for you that could be possible.
Thinking of you /LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

heiders33
Posts: 222
Joined: Sat Nov 04, 2017 11:08 am

Re: Advice for caregivers

Postby heiders33 » Thu Jun 07, 2018 8:31 pm

My sister was my primary caregiver. She is very calm and steadfast, but I think her stress came out through her eating habits because she probably gained 10-15 pounds since my diagnosis. Part of it was her finishing my meals that I couldn’t finish. Now that I am a few months from treatment I have started gaining weight, and we both could stand to lose a few pounds. It’s hard because I relied a lot on carbs when I had no appetite, and I am trying to (mostly) wean myself from them. And since my sister has gained the weight it’s very hard for her to lose it. It’s interesting how stress can manifest itself in different ways.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, no genetic mutations
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: six rounds of mop-up XELOX
March 12, 2018: reversal
April 16, 2018: CEA 2.1, all blood counts within normal ranges
May 2018: CT scan showed liver spot, MRI scheduled

dliu
Posts: 3
Joined: Sun Jun 03, 2018 7:16 am

Re: Advice for caregivers

Postby dliu » Sun Jun 10, 2018 3:15 am

I would like to thank you all from the bottom of my heart for sharing your stories, for your kind words and thoughtful replies. It has been a great help just going through these and reading your tips and how you coped with your own situations. I admire your strength and bravery and I am grateful.

My mum has been feeling much better these last few days but unfortunately has lost 2kgs and, being a tiny woman (39 kg post-operation!) I just worry that she will lose more. She never stopped eating, even over the worse days, but she didn't eat enough not to lose weight. She loves very very sugary drinks, which go well with her soldesam and hopefully keeping her calorie count up but my worry is sugar might take even more of a toll on her liver! Do you have any tips on snacks?

My brother has been a great help on some practical aspects (i.e.: he drives), but he is a very anxious person so at the moment I feel like he is relying on me to tell him things are going to be ok.

LPL, if I may ask, where are you now living? I have been living in a country where my first language (Italian) isn't spoken so I can totally relate.

All the best to you all, and I hope you had a peaceful weekend
Caring for my mum, who had a sigmoid colectomy after CT scan (which also evidenced multiple liver mets)
09/05/2018 diagnosed Stage IV, 6/11 LN
28/05/2018 First round of FOLFOX + Avastin

User avatar
LPL
Posts: 385
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Advice for caregivers

Postby LPL » Sun Jun 10, 2018 2:22 pm

dliu,
Good to hear that things are getting a little better. I do not know if it is recommended for your mom but maybe extra protein could help? There are powder you can add to favorite drinks, perhaps to hot chocolate if she likes that.
You wrote:
LPL, if I may ask, where are you now living? I have been living in a country where my first language (Italian) isn't spoken so I can totally relate.

We live in France now and we come from Scandinavia. English is the 2nd language for us and I and many in my age group, have German as the 3rd language...
Grateful for Google Translate ;-)
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets


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