My Sister Newly diagnosed

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Dee

My Sister Newly diagnosed

Postby Dee » Sat Oct 14, 2006 2:36 pm

My sister, 58 years old, was diagnosed with cancer of the transverse colon. Initially the GI doc said he thought it was appriximately a 2cm lesion, and gave her a refferal to a surgeon. Surgery is this Wednesday. She hit me today with the fact that the surgeon said he believes it to be, 7cm in size. She is very much in avoidance, and I am very much into getting all of the info I can from MD Anderson etc. I showed her this site and told her I thought it would an excellent site for support, etc. But as I said, she is going on as though nothing is happening. My question is, what can I do best to support her post surgery? And am I welcome to come in and ask questions, dispite the fact that I am not the one experiencing the fight itself. I walked the walk of cancer with both of my parents, but will be damned if this one will end the same.

Bryan S
Posts: 82
Joined: Fri Jul 21, 2006 6:44 pm
Location: Florissant, MO

Postby Bryan S » Sat Oct 14, 2006 4:04 pm

One thing I must say early is do not forget about yourself. This is a disease that can run in familes. My mom had it and I had it. You do not state your age or the type of cancers your mom and dad had but if you are over 40 YOU ARE NOW OVERDUE for a colonoscopy (if you have not had one) because your sister has it. I put my coloscopy offf for 10 years and even though I had no symptoms I had the disease.

Now what can you do to support your sister after the surgery ? If she needs chemo that can be before or after surgery depending on her circumatances. For the surgery itself it can vary I was pretty self sufficient but o bending or lifing and if I dropped it, it stayed dropped until someone else picked it up. The thing that she will need help on and forgive me I am not trying to be gross is wiping herself after a BM. You just cannot twist that way for a while. She will need help with shopping etc also because fore the first week or two riding in a car is not a lot of fun either.

Good luck with her surgery and good luck on your colonscopy

missjv
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Joined: Tue Sep 12, 2006 10:38 am
Location: FLORIDA

Postby missjv » Sat Oct 14, 2006 8:04 pm

hi,
your sister needs to take her diagnosis seriously. i had a 1 1/2 mm polyp very small, postive for cancer, all my path reports said i was stage 1 no lymph involvment no vascular invasion and stalk that polyp grew on was negative for cancer and the margins around the polpy were clear of cancer. well long story short i now or was a stage 4 with colon cancer lesions on my liver. this is very rare and docs are scratching there asses as to how this happened so tell your sister this is serious business im fortunate that these liver lesions were found very early and chemo wiped them out. my cancer might come back it might not no one knows for sure with any cancer when and if it will reoccur but she needs to be aggresive and get herself taken care of asap.

missjv

Dee
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Joined: Sun Oct 15, 2006 7:05 am
Location: Sherman, Texas

Postby Dee » Sun Oct 15, 2006 7:12 am

Thank you for your responses and suggestions. I will get my colonscopy as soon as the dust settles, I had one about 10 years ago, I am now 48. As for sis, I think her reality will hit after the surgery, the time for denial and avoidance will have run out. Are there any food more easily tolerated after surgery? They won't be starting chemo until after she heals, and I am already researching who is good in the area, and going to set up for a few opinions before we start.I will let you know what info I get as I receive it, since you all are much more knowledgeable at a realistic level. I can't thank you enough for giving me another avenue of support.
Dee

margotmagoo
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Joined: Sat Oct 07, 2006 11:10 am
Location: California

Postby margotmagoo » Sun Oct 15, 2006 5:23 pm

My friend gave me a book called Eating Well Through Cancer. It is a book with tips and recipes. The recipes are divided into sections depending on how you feel.....constipated, diarrhea, mouth soars, nausea, etc.... I would suggest that you go ahead and make an appt. for your own colonoscopy before the dust settles as the waiting period for an appt. can be 2 months. And, yes, go with your sister and ask questions. You might have some that she doesn't think about. My husband asked questions on my behalf which was a help since my brain was just all over the place. It helps to have a second set of ears to really hear the information. Get a dictaphone to record the appts. so your sister can re-listen and get questions ready. It is a lot of info to process and sometimes important things can be missed

Christine
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Contact:

Postby Christine » Sun Oct 15, 2006 8:51 pm

First I want to say that it is great that you're looking out for your sister. It is important to have that kind of support. But please give your sister some time to absorb the situation. My diagnosis a year ago came as a total shock and I had surgery the same day as the diagnosis. After leaving the hospital, I was bombarded with advice and alternative therapies - suddenly everyone was an expert or had met someone who knew someone who was an expert and if I would just try coffee enemas (someone seriously suggested this), I would be cured. I wasn't ready for it. I was recovering from surgery and the emotional shock of being told that I was likely incurable and that most people die within two years, but after a few weeks (all time I needed to heal from surgery) I started to research and really get proactive about what needed to be done so I could be part of the minority. It took even longer before I started to look for support from other patients - about three months. I have found it to be helpful for myself, but I know some people are just not interested. It can be hard because part of this support involves getting emotionally attached to other cancer patients and seeing some of them get sicker and sicker.

Please don't stop doing what you can for your sister. I'm sure that she will come around, but just remember that it takes time. And at some point you don't know how to help, ask her what you can do. (It's amazing how much I appreciated having people around to pour me a glass of juice.) I'll be thinking of your sister and you on Wednesday.

northern lights
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Location: Yellowknife, Northwest Territories

Postby northern lights » Mon Oct 16, 2006 10:01 am

I was diangnosed in January, and am starting my last chemo on Wednesday. I still don't think the diagnosis has set in. Other than chemo effects, I have felt healthy and energetic. It is hard to think that I am battling this disease that could end my life, but I feel so great. Your sister will cope in her own way, and as long as she is taking care of herself and making informed disisions about her care then she is on the right track. I still haven't had a good cry. If feels that if I start, I may never stop.

I thought about it for a few days about what people have done for me and what I felt I needed and here are a few thoughts.

1. I never asked for anything, but really appreciated what was done for me. Most importantly was the cooked meals. After I was released from the hospitals, my co-workers set up a schedule where a different person dropped off a cooked meal every couple of days. I loved it. The short visit was good for my spirit (catching up on gossip)

2. If you put together a gift basket, here are a few things to consider. Wet wipes for adults. (they are softer on the rear and make cleaning easier). Magazines of her interest. I was always(and still am always) in the bathroom. All Bran bars, Bottles of water (she will need to drink a lot), Crystal light drink mix (water gets boring to drink), Gift certificate for a hair cut or spa services (great for morale) and any of the treats that she likes.

3. Plan something special for the "end of treatment" I live in a very isolated community and have not been able to leave for 10 months. My children and I are going to Disneyland in January. It gave me something to look forward to, kept me busy planning and helps me "dream" about a good future.

4. Put together a binder and note book for everything medical. You will be bombarded by information, and eventually some of the info may be conflicting. If you keep everything organized in one place, you can go back and check notes. I have a binder that has sections for Medical advice, medications (side effects), nutrition, medical procedures and misc. I always take someone to the important medical appointments to take notes for me. That way I can listen, they write and I can refer back to what was discussed.

5. A heating pad was useful post surgery. I had a really sore lower back for about a month. Hot baths helped too.

Your sister is lucky to have you to support her, but don't forget about taking care of yourself in the process. Go and get that colonoscopy.

Sharon

popcornkel
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Joined: Sat Oct 21, 2006 10:06 pm
Location: Michigan

sisters

Postby popcornkel » Sat Oct 21, 2006 10:36 pm

I'm going to echo everyone - schedule your colonoscopy!

I was 36 when I was diagnosed with stage 2b (last Dec). My sister got in as soon as possible, and she had one polyp (age 33). It took us months to convince our 63 year father that he needed to get his colonoscopy. He had 4 polyps!

I wish I remember the site now, but I remember finding a document on a cancer website that was questions to ask the oncologist and surgeon about treatment - maybe at the ACS website? www.cancer.org.

Don't push her - we all get to that point at different times. I remember wanting to kick everyone out of my hospital room when my doctor told me it was cancer. He had already told me 2 days before that he was sure it was, but even with the final lab report I was sure he was wrong. I saw 3 oncologists before I finally accepted I should do chemo. Don't tell her how to feel, let her get through it in her own timeline. As you said, she still has to get through the surgery.

As for food, soft food probably! As we are getting into fall/winter, good time for yummy soups! Probably avoid spicy and acidic foods. Lots of water! My surgeon asked me to avoid nuts and raw foods for awhile while I finished mending.

When she does start treatment, her doctor/nurse should have some nutrition guidelines. My doctor recommended that I avoid fresh fruits and veggies because: harder to digest and bacteria. If she gets oxilaplatin, she will need to avoid cold foods. And will need lots of water!

Just love her! Treat her as your sister, not as a cancer patient.

Kelley

Hannah
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Joined: Tue Nov 15, 2005 3:59 pm
Location: Little Rock, AR

Postby Hannah » Sat Oct 21, 2006 11:32 pm

GREAT suggestions from everyone.

I will echo others when I say to give your sister some time - everyone is different, and she may need more or less time than other people. You definitely want to have a "book" of info - and to make it a little easier, you can order a Survivor Notebook from the Lance Armstrong Foundation. It is free, but you have to pay for shipping:

http://www.livestrong.org/site/c.jvKZLb ... tebook.htm

For now, one of the best things you can do for her is to be here "eyes and ears" since there is no way that she can 100% deal with her diagnosis right now. Take a notebook and pen everywhere so that you can write down notes, thoughts and questions she may have. Especially make sure that she takes someone (if not you, someone!) to the doctor with her every time. It is so hard to take in everything a doctor says even when you don't have cancer!

In that same vein, you can help now by gathering information that may not be used until later. When your sister wants it, you will be able to hand it to her or tell her where to go (whichever she prefers). It is really hard, but keep in mind that everything is all HER decision - she may want to know everything, she may want the doctor to decide everything, she may question everything, she may not. Whatever she needs or wants, it is her decision - not yours. All you can do is to help make sure that she is well-educated and has the information to be able to make her own decisions. This is SO hard if and when they are not the same decisions you would make.

I am not a survivor, but I most often hear from people diagnosed with cancer that they didn't want to be "that person with cancer." Let your sister do things for you, even if it is just to listen while you vent about your job, your kids or a bad day at the grocery store - whatever. Everyone will be doing things "for her" and everything will be centered around the fact that she has cancer. She may appreciate the opportunity to "be normal" by doing something for you. Remember that she is still your sister - talk to her and share with her the same way you always have.

Take time for yourself and take care of yourself - if you don't, you won't be able to help her. MUCH easier said than done!

:)Hannah
Hannah K. Vogler
Co-Founder, The Colon Club
cousin of Amanda Sherwood Roberts
dx 1/99 Stage III at age 24
died January 1, 2002 at age 27


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