Caregivers and Post-NED Life

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crikklekay
Posts: 89
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Caregivers and Post-NED Life

Postby crikklekay » Thu Mar 14, 2019 8:32 am

Whenever something seems to not be quite right or when we get close to a blood test/check-up I always get antsy and lurk on the board and online more in general. For the most part, I try to kick cancer out of my mind and just enjoy being with my husband and appreciating this time of NED peace. But as we have an Oncologist appointment today with blood test results hanging over our heads for a whole dang week I've been a bit more obsessive than normal. In another thread that discussed caregivers, I mentioned my own tangled feelings so I turned to Google to see what I could find on the subject. One article had a section where it felt like they were writing about me, and since others may deal with the same feelings I thought I would share:

One woman, for example, expressed anxiety about her husband, a cancer survivor, who was sleeping more than usual. She was worried that his fatigue was a sign that his cancer was spreading, but because the oncology team no longer saw him on a regular basis, she had no one to reassure her. Caregivers may feel uncertainty about the future or anticipate the loss of a loved one whether it’s a reality or not. Those feelings, which can arise in any stage of a serious illness, including survivorship, can be challenging for families to negotiate, Applebaum says.

https://www.curetoday.com/publications/ ... ancer-life

My husband's last blood panel had a string of interconnected not-so-great results that could just mean he isn't absorbing iron well or (according to Google, I know I know I was just looking up what the test results meant and this slapped me in the face) it could mean liver involvement. This unknown has overshadowed me since November and made happy events like DH transitioning to a better job filled with anxiety when there shouldn't be any. So now every time his gut makes noises too loudly or too frequently or if he has to run to the bathroom more than usual I keep asking how he's feeling and if anything is off. How is his stool? Is the color normal and is there any blood? Any cramps or pains anywhere? I feel like I've gone insane and if I'm not careful my husband will be driven to his wits end in the process. I don't think I realized how much of a security blanket doing blood tests every two to three weeks was. We were constantly checking on how he was doing and now that it's every three months if something looks a little off it seems like such a long long time to find out if it was just a weird blip or something to be concerned over. Now I just have to manage my anxiety until 3:30 today which will hopefully show the bad numbers were just a post-surgery blip and everything is still going the right direction.
Caring for DH John, 41
DX: Colon Cancer, Sigmoid colon
Tumor type: Adenocarcinoma
Tumor grade: G2, Moderately differentiated w/invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6/22
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/ MSSA infected port, PICC line inserted, abdominal CT scan clear chest CT scan showed septic emboli & blood clots
03/18 Hospital w/ CDIFF
04/18 Chest CT scan clear
06/18 Colonoscopy Clear
08/18 CT Scan Clear, NEMD

AmyG
Posts: 119
Joined: Tue Dec 25, 2018 8:08 pm

Re: Caregivers and Post-NED Life

Postby AmyG » Thu Mar 14, 2019 12:26 pm

I really hope everything looks fabulous this afternoon! If you get a chance to update after your appointment, please do. I'd love to celebrate good news! :D
42 dx @ 9wks pregnant w/baby #8 8/18
Originally thought to be stage 2, no lymphnodes involved 9/18
Spot on liver found prior to bowel resection 9/18
Liver biopsy, it's malignant 12/18
Stage IV, 1 liver met 4.7cm
2019 plan is to deliver baby early and start FOLFOX w/Avastin

Punky44
Posts: 286
Joined: Mon Oct 01, 2018 4:29 pm

Re: Caregivers and Post-NED Life

Postby Punky44 » Thu Mar 14, 2019 2:06 pm

I wish I had some good advice but I am in the same bar. We aren’t even NED yet but god willing will be next week when my mom has her surgery. Even though I’m excited for the possibility of this being the cure, I am just worried sick about the long road of monitoring ahead. I literally feel like I can’t breathe at the thought of a slight rise in CEA or a new spot showing up on a scan somewhere and I don’t know how I am going to live my life like this for the foreseeable future.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

crikklekay
Posts: 89
Joined: Thu Feb 15, 2018 9:47 am
Location: Richmond, VA

Re: Caregivers and Post-NED Life

Postby crikklekay » Fri Mar 15, 2019 5:25 am

Well the results weren’t what I was hoping for, though the Oncologist seems unperturbed. Two of his bad levels improved, HGB and HCT have gone up so the iron pills are helping there, but his MCV and MCH have gone down for a second time. She explained this means that his red blood cells are small, but she wants to continue with the iron to see if it improves by June. If not then we need to figure out what is causing it. Plus his ALK PHOS levels shot back up when they had been steadily decreasing but she thinks that’s because of his sudden weight gain irritating the liver. Sine he is otherwise having no issues or symptoms she said he’s doing well. One good thing was that his CEA level continues back down to normal, though I’m not sure how good of an indicator that is considering the highest it got was 4.7 during treatment. I don’t like the idea of waiting 3 months to see if this unexplained anemia goes away?? Maybe I’ll make another thread asking if people have any experience with this.

Punky44 wrote:I wish I had some good advice but I am in the same bar. We aren’t even NED yet but god willing will be next week when my mom has her surgery. Even though I’m excited for the possibility of this being the cure, I am just worried sick about the long road of monitoring ahead. I literally feel like I can’t breathe at the thought of a slight rise in CEA or a new spot showing up on a scan somewhere and I don’t know how I am going to live my life like this for the foreseeable future.


Being told that you’re finally at the end of treatment and the cancer is gone is a wonderful feeling. No more spending all day at the Oncology center! The chemo side effects will finally start to ease! But there is always a small part of me that whispers “well for now at least”, and that’s the part which also assumes any hiccup could be the cancer coming back. It is horrible, waiting for test results all while your mind is panicking about the possibility of being kicked out of NED. But it isn’t constant, you will have days where it isn’t there at all. I have had to remind myself not to limit how we live because the cancer may come back, and that is also terrifying haha. But I’m handling this like I handled my DH going through treatment, I just put one foot in front of the other to keep moving forward. I know with time this will get better, and if his test results last time and this time were good I’d be farther down the road on being less anxious. I wish I had better advice for you, but if it is ever overwhelming and you have no one else to talk to just post here and we’ll be ready with the digital hugs!
Caring for DH John, 41
DX: Colon Cancer, Sigmoid colon
Tumor type: Adenocarcinoma
Tumor grade: G2, Moderately differentiated w/invasion of visceral peritoneum
Stage IIIC
Positive lymph nodes: 6/22
Chemotherapy: FOLFOX (6)
12/17 ER and emergency surgery
02/18 Hospital w/ MSSA infected port, PICC line inserted, abdominal CT scan clear chest CT scan showed septic emboli & blood clots
03/18 Hospital w/ CDIFF
04/18 Chest CT scan clear
06/18 Colonoscopy Clear
08/18 CT Scan Clear, NEMD


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