Posts by Jessica Taylor62

Nancy Thomas18 says:
I’m just about to start chemo, and I have so many questions that I can't find answers to anywhere. If anyone is willing to write to me about diet, handling chemo, or complications after surgery, I would be very grateful.

My mother had surgery a year and a half ago and now has a stoma.
It was primarily colon cancer that had metastasized to the lymph nodes.
At first, she was extremely strict with her diet. No pork, and all other meat was strictly boiled. She stuck to red onions, garlic, and peppers—nothing that causes bloating. No canned food, nothing pre-packaged, and no juices except for tea or homemade juice. Now, she eats a little bit of everything, but only in small amounts whenever she actually feels like it.
She didn't undergo radiation, but she did complete 14 cycles of chemotherapy using Xeloda tablets.
Regular checkups and a strong belief in recovery worked wonders for her.
Now, she's back to her old self, living a more active and cheerful life than she did even before the surgery.
Also, after the operation, we used our disability benefits to pick up Aquacel bandages at the pharmacy and brought them to the hospital during her dressing changes to help the wound heal faster. That's what the doctor requested. Right after the surgery, she contracted an MRSA infection in the hospital, so she ended up spending two months in the hospital total.
Generally speaking, people with a stoma are eligible for 80% disability and caregiver assistance, which comes out to about $133, plus the right to reimbursement for those $10 administrative costs through her primary care physician.
By all means, ask whatever you need to know. Don't think you're alone in this. I found a ton of information here on this forum, though some things I figured out on my own. Scheduling extra exams or anything else isn't a problem for me anymore. Just ask; I can't write out every single detail right now, but I am happy to help.
Best regards, and take care.

Linda Campbell
Just try talking to the oncologist again before the radiation starts.
Explain that Mom isn't eating and she's losing strength, then ask them to prescribe Ensure. My mom recovered in just one week thanks to that drink—her blood work actually improved—and she was able to push through her chemo. She had zero appetite too, basically forcing herself to eat, but now she’s up at night grabbing a few snacks. Wishing you all the best.
Regards.

I have a little more to add
When we first found out about my mom's diagnosis, I made a massive mistake. I wasn't honest with my kids; I tried to sugarcoat the whole thing to protect them, but they saw right through me.
They sensed something was off and, naturally, they went online and figured everything out.
It took some work to smooth things over, but we've moved past it. Now, we talk about everything openly.

Back again with you all.
I find myself checking this forum several times a day just to stay updated.
My mom finished her 8th cycle of chemo, and her oncologist suggested pushing through to 12 cycles, so we'll see how that plays out...
She wrapped up her 9th cycle last week and is starting to feel the fallout now.
She’s still fairly mobile, but she tires easily, lacks strength, isn't eating much, and is dealing with dry mouth, dry skin, and diarrhea.
She mentioned all of this to her oncologist at yesterday's check-up. He prescribed Ensure and recommended an extra week of rest before the next round. You can get Ensure via a blue prescription, though there’s a co-pay for a 30-pack $10; it comes in vanilla and chocolate.
She forgot to ask about the artificial saliva. I managed to grab the prescription yesterday, but I have to head over to Union Square to pick it up at the pharmacy. It’s a 50ml bottle of drops. I wanted to wait until she could consult the oncologist, but has anyone here used it? I'd rather not wait if it works.
Angela Wright, thanks for the recommendation on the Native propolis.
There are so many dietary supplements claiming to help that it honestly leaves you confused. You end up with a hundred questions about what to buy and what dosages actually matter.
And then you read about how wildly different the prices are—how some people are getting filthy rich off other people's misery...
Take Noni, for example. There are at least ten different brands, and nobody knows which one is the real deal.
My daughter was in the Dominican Republic, and they sell Noni in regular corner stores for pennies.
Whether it actually helps or not, I can't say for sure.
My mom took it, but I can't claim with 100% certainty that it made a difference.
Right now, she’s taking Native propolis twice a day and beet juice.
Regarding the Beta-glucan and ImmunoMax, I wanted to order them, but I had too many questions and decided to hold off for now.
And Angela Wright, you’ve really started a very positive chain reaction here.
I hope that in time, we can uncover enough information to truly benefit all patients and their families.

Brenda Richardson33, I am so sorry
Please accept my sincere condolences.

Similarly, some people want to know absolutely everything about the illness they’re facing—every possible treatment option (because that's what we want)—while others prefer to remain in the dark, just like the example you mentioned. Ultimately, that choice belongs to the patient and their family. It isn't up to the doctor. That’s one thing I find frustrating about the system.

My mother was diagnosed just 10 months ago, and everything the doctors have done so far is yielding results. If it weren't, believe me, I would be doing exactly what everyone else does: searching for alternative treatments and asking questions. My mother talks to her doctor directly; she gets all the answers she needs. I was simply trying to explain how I, as her caregiver, handle things. I had to create some distance to avoid getting too deeply overwhelmed. If I didn't, the dark thoughts would have crushed me much sooner.
And when you see those doctors and nurses who deal with critically ill patients every single day, treating them as just another routine task, don't mistake their silence for indifference.
I truly believe it is incredibly difficult for them to watch patients *pass away* day after day while feeling completely helpless. It might even be worse when they know there are options that could help, but they remain inaccessible due to the mess within the healthcare system. Everyone is aware of how long the wait times for radiation can be, and there's nothing they can do. It's an extremely heavy burden to carry.
At the same time, I won't claim there aren't "hardened" doctors out there—people who have Googled other people's suffering and pain and simply refuse to bother with the patients or their families.
Those types of doctors fail to build trust or offer any sense of hope for recovery, which, in my opinion, is their biggest failure. Instead of providing support, the patient and their family are met with ignorance, which only worsens an already dire situation.
And honestly, I don't see any way to force the government to finally provide equal and adequate care for all the sick and vulnerable.

Donna Fox48
I completely hear you.
In a situation like this, it’s easy to feel angry at the entire world.
Personally, I think it’s pathetic when certain doctors dare to give prognoses, even if many claim they can do so based on experience.
To be honest, I don't know much about this specific type of colon cancer my mother has; frankly, it feels much easier not knowing. At first, I was terrified of running into a doctor or anyone else who might drop bad news on me, so I barely asked anything. Looking back, staying uninformed was actually the right move. It kept me from obsessing over a future that hasn't happened yet and crying constantly. Instead, I just focus on giving my mom the very best of me, day by day. I believe she needs that more than she needs me wasting my time and nerves studying a disease that even doctors don't fully grasp.
Have faith that things will improve. Just stay by your dad's side and somehow show him that you aren't afraid for him. Even if you are, it will make things much easier for him.
Try to help him maintain his dignity and show him how much you love and respect him. I assume he knows how sick he is, so if you can, talk to him about it. It helped my mother immensely to share her fears with someone.
Usually, older people don't have close friends to lean on, so they are willing to open up to their children—but they need to feel that their child is strong enough to handle it.
Whenever he needs something, or you think he might, just bring it to him, even if it means making several trips to the hospital a day. It won't be a burden, and you should ALWAYS make time for him. Believe me, it will mean more to him than anything else and will help him recover faster.

Here are my thoughts on the doctors
I haven't actually talked to them much myself because my mom decided she wanted to handle things personally. She’s incredibly sharp, and she’s been extremely satisfied with everyone she’s dealt with. When she first arrived at the hospital for her exam, they told her exactly what was going on right away. Even before surgery, the surgeon came to her room to explain the entire procedure. She later told me she almost turned around and went home, but the doctor comforted her and explained there was nothing to fear. Honestly, thanks to him, everything was much easier to bear. Later, when we went in for follow-ups, we’d find ourselves waiting for him for up to four hours. I was starting to lose my patience, but she would just defend him, explaining he’s busy and that he’s an excellent doctor. It turns out she was right. She has total confidence in him, and when he tells her he’s happy with how the treatment is progressing, she’s genuinely happy.
The first time we were at the Cancer Institute, we waited about four hours just to see a radiologist. The doctor gave her a very brief look, took the data, grabbed all her paperwork, and said they’d mail the follow-up treatment plan to her house. We walked out, and I just stood there like a statue. He didn't really explain anything—just added a few bits here and there, I guess. It lasted a few minutes. When you arrive facing a diagnosis like that, being told "we'll send a notice" is totally jarring.
Around 12:30 the next day, the phone rang. It was that same doctor calling to say that during today's consultation, they decided she needed another CT scan, so to come back once that's done. Again, I was left speechless because I really wasn't expecting the call. To me, that shows a high level of responsibility toward the patient.
At the oncologist's office, our first wait was about two hours before they scheduled her for additional exams at the hospital. As we were leaving, the doctor pulled me into his office to explain everything regarding chemotherapy. Since she takes the medication at home, he warned me about all the side effects and what steps to take. He was patient and polite. When I asked about starting the medication immediately, he simply replied: this illness didn't appear overnight, and it won't vanish overnight either; a couple of days don't make a difference.
I forgot to mention that before she was discharged after surgery, the head nurse called us over to show me how to manage the stoma. She warned me about what to watch for and gave me some informal advice to bring her into the ER in the afternoon if anything gets complicated. Fortunately, everything has been fine, which proves the surgeon who operated on her is a master at his craft.
I should also add that over the last ten months, only one nurse was rude, and only because she wouldn't tell me I could leave a deposit if I didn't have a referral until I insisted.
My humble opinion is that the doctors and the rest of the staff are doing the best they can. They aren't to blame for the lack of better hospital conditions or outdated equipment.
Also, not a single doctor recommended any dietary supplements to help with faster recovery.

jadesurfer3, before my mom got sick, I had no idea things like those wound dressings even existed. It always fascinated me how doctors pull it off—saving lives like that. At the hospital, they’ll walk you through how the dressings are swapped out, but you need to decide which type you want because there are several different kinds. Through Medicare, you're entitled to the dressings and supplies, so ask her primary care physician for the authorization forms. Just make sure they enter the disease codes and medical material codes correctly. For instance, if the hospital recommends Aquacell AG patches for a wound, the authorization needs to list the code for pressure ulcers rather than cancer, because those specific patches aren't approved for cancer treatment—something a lot of doctors don't realize. Wishing your mom a speedy recovery.
Are you in Chicago?

Last year, my mom was diagnosed with colon cancer.
I don't even know how I managed to stay as cold as ice so she wouldn't sense what was happening inside me. I just funneled all my strength into her and everyone else around us, but I did it.
She’s on her last (hopefully) round of chemo. In two weeks, she has her follow-up with the oncologist at the Mayo Clinic, and then we'll see.
After the initial shock, I just told myself: #we are all mortal, deal with it#. Somehow I managed to run away from those dark thoughts and just move forward. I told my brothers and sisters plainly that I am taking charge of her care, and they can help me if I ask. Even though there are several of us, she trusts me most, and I have the most influence over her. It turned out to be the best solution because I'm not working right now, so I can be by her side constantly—waiting hours for doctors, picking up referrals, getting medications, etc. The others step in when I call. I feel more secure knowing everything will get done correctly if I handle it myself.
Throughout this whole process, our roles have completely reversed. She’s like my child, and I’m her mother.
There is an endless list of things you have to manage for a patient like this—referrals, insurance paperwork, tracking which doctor needs to see her and when to schedule specific exams.
I had no clue about any of this initially. I just took it one step at a time and learned as I went, but it would have been a hundred times easier if I could have talked to someone with actual experience.
The only reason I registered here is to help anyone else who might need advice.
To start with: you can get a CT scan in Chicago using a referral (IT'S FREE) at DIAGNOSTICS 2000 on Martićev Street much faster than at any hospital.
Oh, and the ostomy patient association didn't even bother to reply to my email.
I was looking for dietary advice. The hospital provides such a meager description of nutrition; half the meals aren't even fully listed, so you have no idea what is allowed. At first, she was on a very rigorous diet, and then she slowly started eating certain things again. But she still can't have onions, peppers, beans, peas, pork, or cabbage...
The worst part is that in the 21st century, you can't find basic information, and everyone assumes that once someone close to them gets sick, they suddenly become experts on the disease. I wrote this out a bit messily, but how am I supposed to know what a lab report means and judge her condition based on that? In the beginning, people kept asking me all sorts of stupid questions and telling me to "go talk to the doctor." I discussed this with my mom, and we agreed that I won't speak to the doctors—except immediately after surgery. After that, I stopped engaging with those comments and stopped trying to study the reports myself. I just take Mom to the hospital, hand her the papers, and let her talk to the doctors while I wait outside. Whatever she wants to tell me, she tells me. I read what they wrote, and that's it.
In situations like this, it seems best to just go step by step, day by day. The worst thing you can do is jump into the future, because then you're basically in a coma. Whatever will be, will be...
I could write forever about this, so if I can be of any help, I'm here.

s
you really do find yourself worse off