advice needed from CC patients
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Has the dentist been informed of the cancer? My dentist said that many of her patients with cancer get a very dry mouth, which sometimes leads to more cavities and/or to sores in the mouth. She gave me a sample of “biotene” which comes in mouthwash, toothpaste, and maybe another form as well. I was sparing in using it, but it worked. At the first hint of a sore, I would use that and the sores never developed. In 2 1/2 years, I’ve never had a mouth sore to show the oncologist, and my dentist has not had any cavities to find or fix.
I also had people prepare meals for me and my family on chemo days, and it was a tremendous help. Since I only live a few minutes drive from the hospital, I rarely had a driver take me to my appointments. Whether your mom would appreciate a driver is something you could ask. I always took something to do while getting chemo. Crocheting was a great choice for me, because people could talk without interrupting my hobby, but if I took a book to read, people would not generally interrupt. My cancer center usually had jigsaw puzzles and snacks available. Dehydration could also be a big problem during chemo, so leading up to and immediately (for about 3 days) following each infusion, having plenty of choices in fluids was very helpful. Keeping the fluids flowing may not seem like much, but it had noticable impact.
Has your mom lost any hair or is she expecting to? Hats, scarves, various head coverings could be fun, too.
When you know your mom, anything you can do that will help her feel more natural, more herself will help and will be appreciated.
Best of everything to you and to your Mom!
LouiseShowing concern, being there to run to the store, fixing something like a shake out of that darn ensure, adding fresh fruit or really anything that will get her to eat or drink. These things help more than words. Having said that, you need to know, this is what helped me recover from my successful whipple operation.
My margins were also clear, and no lymph node involvement, tumor completely removed. NO chemo was done. They told me that in my case, doing chemo to prevent the cancer from coming back, was not proven to help anything. I did not press them on this as I was not anxious to have that poison in my veins for no reason.
Hi Kimmie and welcome, great news about your Mom’s successful resection! My 3 yr. old son and I took my Dad to almost every chemo appt. He loved it when Jay held his hand enroute to the center. When I sensed that he wanted more space, I just disappeared to the cafeteria for awhile. Special foods that he had cravings for were always appreciated, but he hated it when we tried to push food on him if he didn’t feel like eating. Dad loved to do what he always loved to do… make small talk about sports, chat on the porch, have card nights, watch his old movies, go out for a soda- to get out of the house, etc. He never wanted to talk cc, and so we never did.
You already know what makes your Mom smile, better than anyone else- you’re clearly a great daughter…. trust your instincts, and give her a little more of what you know she loves!
Wishing you all the best.
Tess
Well said Lainy. It reminds me of my ordeal and very much how I felt at times.
To all the advocates and caregivers for CC patients, you’ll do a wonderful job. Just let things unfold and everything just seems to work itself out. In our case it did, through good days and bad.
Raye
Hi Kimmie and welcome. I believe all your thoughts a excellent as is the advise already given. I would like to look at this from the patient’s views, which could also help. This is the patient bill of rights and I think every now and then we all need to be reminded:
If I should express anger or depression,
PLEASE DONkimmie…..just being there for your mom with support will pick up her spirits….all the rest will fall into place………sending prayers and well wishes…..ron
Kimmie,
Welcome…pull up a chair this might be a long post…..I love having someone with me when I get chemo. Fact is I have never gone alone. It is so boring, though I can listen to music and relax. Having someone with me distracts me. I have had wonderful conversations, cuddled on the bed with my husband, played cards, and had suduko competitions with my sister. I dont know how it works at your hospital, but at mine, there is always the possibility my doctor wants a quick word…and with cc you never know whether that is good or bad news so it is good to have someone there.
It is also good because I dont have to drive and people fetch the car so I dont have to walk across the huge hospital parking lot. Chemo makes me tired and sometimes walking that far is just impossible.
I sometimes get a fever the day I get chemo so it is nice that my lovely husband cooks on those days and I get to veg and not worry. When my sister came to visit, I got completely wiped out and we just laid in my bed and watched tv. I would dose in and out, but it was nice just to have company.
Here is something I will not admit to loved ones…there are times when I have completely lost my appetite and the only reason I ate was because I was being nagged to do it. I hate it at the time, but having eagle eyes on what and how much I am eating has been beneficial. I swear Hans measures my food before and after. It is now to the point that if I put my fork down and still havent eaten enough, he will give me a look and I know I have to eat more.
My sister is like you. She is always finding ways to help or cheer me up. For instance when chemo made my mouth so sensitive that normal toothpaste really hurt, she went out and bought childrens toothpaste…she picked the one that had stars in it to cheer me up. It is really the small things that make a difference.
No one has ever made me feel less than healthy, even when I would have to stop what we were doing for a nap. I think that has been the key, everyone is helpful and concerned, but treat me the same.
The one thing that really bothers me is my lack of strength now. I need help with the most common things like opening a coke bottle. I need help carrying things or sometimes getting up if I sit on the floor or the chair is too low. It is amazing how surgery can steal strength from you. So if you can help with the heavy stuff and possibly loosening tight lids, that can help.
Laundry. I dont know why, but for me laundry just sometimes doesnt seem too important. It is heavy and all the folding and putting away is sometimes just too much. I and my husband have both ran out of underwear since chemo started. not good.
Keep your moms refrigerator full of drinks. It is amazing the change chemo makes on your mouth. Dry mouth, sensitive mouth…it can all be there. Plus, dehydration can be a concern. Carrying drinks is heavy and might be too much after chemo, so getting them before hand could be helpful.
And the last thing you can do, do things she enjoys. get her out of the house. The more normal things are, the better you feel. I am learning to live within my limitations now. Sometimes that means I can do everything and sometimes it means I can do nothing…but I hate being treated like I am sick. I ask for help sometimes and sometimes others sense the need and step in without asking. It is a definate balancing act to be helpful without demoralising the patient. That is why getting out for dinner or a movie is so important. Sometimes you just want to be yourself and not a patient which makes normal activities all the more important.
Kris
Kimmie,
Real mail is such a rarity these days, homemade stuff from grandkids is a great idea. My mom was really surprised at all the cards she received during her illness and I could tell she was very touched by this simple gesture. My niece made her a special homemade box of inspirational notes to open in the days leading up to her surgery and they were dated so she had one to open each day until her surgery.
Patty
Hello Kimmi. I wanted to welcome you to our site and wanted to say that you will not be lacking any advise from the fantastic members. I am happy to hear that your Mom was eligible for a resection and that she has recovered quite well. That is something to celebrate. Your questions have come up before and the answers were nothing but amazing. I am hoping the same for you.
Best wishes,
MarionI’m looking for advice – I’m a 40 yr old woman with a 62 year old mother diagnosed with intrahepatic CC.
Quick history: My mother was diagnosed with a large liver mass on the left lobe on May 20, found during a CT scan at the ER where she’d gone for unrelated stomach flu. A biopsy the next day showed it was adenocarcinoma consistent with metastasized cancer, but every possible kind of primary site was ruled out – the poor thing had just about every test and scan you can think of, finding no other cancer sites from top to bottom. I know we were lucky that it was “incidentally” discovered.
She was determined to be a candidate for resection, which was July 2. They removed the entire tumor, the main one being 12cm x 9 cm x 6.5cm, with multiple small tumors ranging from 0.2 to 1.5cm. The margins were all negative and they didn’t see evidence of any right lobe involvement, and the lymph nodes removed showed no signs of malignancy. They staged her T3N0MX.
She tolerated the surgery really well considering (well, it really sucked for her, but apparently she did great and is recovering well). She met with her oncologist last week and they will schedule her for a port this week and begin chemo ASAP. She will receive Cisplatin and Gemcitabine on day 1 and day 8 and then day 15 would be a blood work day and no chemo. This would be repeated every 3 weeks for 4-6 cycles. She will be at the infusion center about 4-5 hours on chemo days.
Whew… OK, that wasn’t a quick history. But my question is – what’s the best way to offer my support? We are a close family, but the last 3 months have certainly brought us closer. I live 20 minutes away and work from home with two kids in school, and have a sister who lives 5 minutes away but works full time. I can be available to take her to the infusion treatments. Any of you receiving chemo, would you rather have a loved one there with you or not? How quickly will the chemo start making her feel crappy? What are some things you love that a family member does for you, or wish they would do for you? Did you like people to cook or shop for you? Should I get her a book on nutrition during chemo? Should I send her funny cards and drawings from the grandkids in the mail to help give her a smile?
This is all very hard for me metally/emotionally. I am a total Type A person, a doer, a problem solver, a push-my-emotions-inside kind of person, and I research stuff to death. The helpless feeling is difficult for me, the fact that I can’t cheer my Mom up or help her feel more at peace or more positive. I’m sure it’s normal for her to have good days and not-so-good days emotionally, but she’s quite down right now after meeting with the oncologist last week, moreso than she has been I’d say since before the surgery.
I think I’m kind of babbling at this point. If you have any pearls of wisdom or bits of advice I would really appreciate it.
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