CSN Login
Members Online: 0

You are here

CSN Outage 9/17/20

CSN will be down for maintenance 7/19/20, from 10pm-11pm EST. We apologize for the inconvenience. 

Scared Newbie

Julie 44
Posts: 479
Joined: Oct 2008

Hi everyone, Very scared about chemo...Had surgery on 10/18 to remove large mass from my colon. Mass and lymph nodes are cancerous. Going Friday for a second opion to Sloan Kittering. Very nervous and scared about chemo..Been reading to much and am getting freaked out... Any advice and help would be wonderful...Thanks

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi,

Sorry that you're here on this forum for this reason, but it does seem to be a group of loving and caring people that like to answer questions when they can.
My advice prior to your next appt. is to get a big binder and set up a notebook. Always ask for copies of labwork, scan reports, Dr. notes, etc. I have been going through this for the past 14 months and I have made it a point to be very organized by getting copies of everything. There have been times I've been at the Dr., had my notebook with me, and have flipped to and referred to certain CT or PET scan reports and/or numbers in my labwork, when my Dr. couldn't remember something or find it himself. It's especially helpful to have with you when you see a different Dr. who doesn't have all your info. I've been able to say, "Here, do you want to make a copy of this?"

The chemo and or radiation you'll get will depend upon your staging and also your oncologist's approach, so definitely read up online about the various types ahead of your appt and write down questions & bring note paper to jot down any answers. I've found I don't always remember exactly what the Dr. said, even though i think I'm going to. Always a good idea to have someone else go to your appts. with you, too.
Like I said, I've been doing this for 14 months now (3 months off & am doing it again) & I am about to go see a different oncologist for the first time to see if he agrees with what my current oncologist is doing or ir he has different ideas.
I actually did fairly well with all my chemo- with tumor reduction and also in side effects. I did definitely have some side effects, but they weren't nearly as bad as I thought I'd be. Back before I started, I really thought I'd be bed ridden most of the time & I definitely was not. I got tired a lot, but that was only 3-4 days each time & then I always had days of feeling good before the next chemo dose.

Are you a believer in the Lord? If so, cling to Him. It certainly may not always seem so, but I strongly believe that God carried me through this. Yes, I asked the "why me" question- that's normal. But, my faith in Jesus was strengthened throughout this ordeal, as I'm brought to my knees often. Do you mind if I pray for you? I'd really like to do that- for guidance for the doctors you're dealing with and for peace and for healing for you!

Take care,
Lisa

Julie 44
Posts: 479
Joined: Oct 2008

Thanks for the advice on being organized. I will do just that.. I have stage 3 cancer and many lymph nodes were cancerous. The first oncologist said 12 treatments in 2 weeks. Just to ease my mind going for second opinion...What should I expect when I start treatment???

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Even though this isn't a club one chooses to join, if one finds themselves traveling this route, then this is the best support club one can join... and we don't even have to get dressed to talk to each other :)

I realize you are voicing fear right now, and I can so relate to you. When I was first diagnosed, I went through the surgery, but my biggest fear was when I was going to have to go through the chemo. Like everyone else, I had heard horror stories and I was dreading it. When my doctor (GP) told me to try to relax and just take it a day at a time, after all, I had been through the worst of it having gone through the surgery, I thought he was nutz and just trying to make me feel better. Surgery couldn't be the worst... it had to be chemo that was going to be the worst!! I, too, was told that I was going to have 12 treatments, one every two weeks. That's 6 months of chemo, PLUS I was going to need 6 weeks of radiation and be on a different chemo during that period. So all I could picture was me at home, bedridden, throwing up every couple of minutes, clumps of hair falling out all over the place... and my life as I had known it, would be completely over. I WAS TERRIFIED!! And I think that's putting it mildly. Then, if I made it through all of that, there was that terror that I might die anyways.

Am I somewhat close to what you are feeling as you start this journey?

If so, let me assure you it's nowhere near as bad as I had imagined it to be. Sometimes, I think our imagination works against us when we really need it to work for us!

Ok... let me be honest. Chemo is NOT something one would pick to do for the fun of it. It is not even a drug one would pick to get sympathy or attention for (there are many other things one could pick that would meet those goals, chemo is not one of them). Everyone reacts differently to chemo - even if 10 of us took the exact same kinds of chemo for the exact same disease, for the exact same period of time... we all would have totally different reactions. Some would be very sick, some would be so-so sick and some would have very few, if any side affects. There's no rhyme nor reason to why some deal with it differently than others.

My oncologist thought I had a pretty bad time with it... I thought I was doing very good . Let me give you an example. One of my loves is working in the theatre community. Here in Vancouver, in the summer we have an outdoor theatre where we put on two full Broadway musicals throughout July/August. While I was on chemo (on the pump for 48 hours every two weeks), I still managed the box office for both productions... and that is with audiences of over 2000/night, 7 nights/week. The only nights I missed were the actual day I got chemo... I had to go to the Cancer Agency for 4 hours of infusion, then was hooked up to the portable pump, then home for the next 44 hours, before a homecare nurse would come to my apartment to unhook me (hehe...once she came to the theatre in Stanley Park and unhooked me). I took that first day of each chemo treatment off from the theatre because I thought I would be tired and that wouldn't be fair to the theatre to say I'd be there, and then not be able to make it... so they had backup for me. As it turned out, I probably could have done it, but hey... let's not push a good thing ;)

Where my oncologist thought I had a hard time was because one of the chemos (oxipilatin) did have the yucky side affect of sensitivity to cold.. any kind of cold. I also got neuropathy (numbness) and nerve damage in my feet. This didn't make me feel horrible, but it is one of those things that I'd rather I didn't have.

So, your mileage may really vary... and who knows, you may be one of the lucky ones! I consider myself to be one of the lucky ones because I could still do thinks I love doing... and still be good to myself. If I got tired, I napped... no big deal to me, since I didn't have to go to work (I'm on Long Term Disability insurance). If you have to work and get treatments, you may find it a little harder... just remember to be good to yourself and that you and your health come first.

Huggggs,

Cheryl

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

"So all I could picture was me at home, bedridden, throwing up every couple of minutes, clumps of hair falling out all over the place... and my life as I had known it, would be completely over". I think we ALL pictured that! And like you said, while it certainly wasn't THAT bad, it certainly wasn't a picnic! Plus, when you are in the middle of it, it doesn't seem nearly as bad as it is to those on the outside looking in! I always say, God does a wonderful job of not letting us see ourselves as we truly are; otherwise, how could we get out of bed and head out, once again, to get hooked up to those drugs that are going to send us on that crappy roller coaster once again!
Mary

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Granted, not a walk in the park...but I always consoled myself that it, too, would have an end. For me, I was in such pain (my tumor was pressing against my tailbone), if they would have said to end the pain that I had to stand on my head while drinking orange juice, I would have done it (rofl)!!!!!

Sloane Kettering has a great rep....the one thing you really need thru this is confidence in your treatment team...

Every one reacts differently to chemotherapy....but stay hydrated, and the road will be easier.

Please keep us posted, and welcome to the semi-colons!!!

Hugs, Kathi

kmygil
Posts: 881
Joined: Feb 2007

Hi Julie,

I'm sorry to welcome you to this forum, but since you have what you have, this is the best place to be.

First, take everything one step at a time. Chemo has such horrible images associated with it that I was terrified the first day. My husband chose to announce this to the entire chemo room, and everyone immediately responded with advice, caring and sharing. There were all sorts of cancers represented in that room. Almost everyone was on a different regimen, but they all shared their stories and experiences. Fortunately, there were 2 people who were at the end of the same chemo I was starting, and they gave helpful advice and shared funny stories.

Also, most chemo nurses are amazing and wonderful people. They pick up hints from other patients and can offer advice on different things related to the chemo. They are the most compassionate people you can imagine.

Here are some of the things I found important (some in hindsight):

1. STAY HYDRATED! Due to the oxaliplatin, everything had to be warm or at room temperature to go down my throat, because there is a negative cold response. Also the drugs made everything taste really bad to me, so I neglected the water (and food). This was not good and there were consequences. So drink water and stay nourished!!!!!

2. CUT YOURSELF SOME SLACK! As time goes on, chemo does tend to take its toll, so be good to yourself. Rest when you need to and don't feel guilty if you can't manage to do everything you did before.

3. STAY CONNECTED! For many people, the tendency is to isolate themselves, either due to their personality, or depression. Don't let that happen. If you get depressed (rage, sadness etc), get on antidepressants. It's normal to be very sad and angry about diagnosis, but don't let it compromise your healing! Be active in this forum, and stay in touch with friends. Get out and do stuff when you feel up to it.

4. ASK FOR HELP! Many of us have an ingrained loathing to ask for help; we feel somehow diminished when we can't handle everything ourselves. But I must tell you, sometimes you just can't. Don't hesitate. This also makes your friends and loved ones feel like they are actively participating in your healing, and they don't feel so helpless.

5. ASK QUESTIONS! Ask your medical team anything. If someone gets defensive or doesn't want to talk straight, get someone else.

6. CHECK YOUR MEDS! People make mistakes. Check every bag that is hung for your chemo. Be sure it is what you are supposed to be getting.

7. LOOK FORWARD! It is easy to get caught up in a miserable moment. Don't let yourself stay there. Visualize yourself down the road feeling better and being healed. Chemo is temporary. You have the rest of your life ahead of you. Ignore statistics. They are only numbers.

Well, that is my lecture for the day. Positive thinking and active participation in your healing will speed things along.

Sending prayers and hugs your way,
Kirsten

Julie 44
Posts: 479
Joined: Oct 2008

You have all helped put my mind at ease...I will get through this just like all of you...How long have you all been in remission???

kmygil
Posts: 881
Joined: Feb 2007

Hi Julie,

I have been NED (no evidence of disease) for 2 years with the colon cancer and 1 year with the endometrial cancer. My onc says that the 3rd year is the big one for me. If I go 1 more year NED then I have a really good chance at being NED after 5 years. Again, everyone is different and statistics are just numbers. I was Stage 2-b on the colon and very early on the endometrial, so both were detected early. What all of us have in common is the journey through this and how we move toward healing, not just surviving, but thriving, putting fear behind us and looking forward to a good future.

Hugs,
Kirsten

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

Good advice. What I do is I always ask my nurse "What's that" as she's putting a new bag up, or I say "that's my CPT-11 (insert your drug)" just to make sure they look, and they always DO look before answering your question.
Mary

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hi, Julie. I hope your chemo part of the journey will be not too horrible. Come here often to get advice and just to find a shoulder to cry on. We're sorry you have to be here, but we welcome you with open arms.

*hugs*
Gail

Julie 44
Posts: 479
Joined: Oct 2008

Hugs to everyone for making me feel right at home for welcoming me into the club.(Best club to be under the circumstances)Thanks

pamness
Posts: 513
Joined: Nov 2007

Who isn't. Thanks to all those TV shows showing people with hair falling out, throwing up all over the place, etc.

Fast forward to 2008 - most colon cancer patients don't lose their hair - mine grew so fast (as did my nails) that it drove me crazy - my "natural" blonde required more maintenance.

I did fall into the 1/3 of the people who do not tolerate oxaliplatin well. I was OK with the 5FU, and leukovorin, surgery and radiation. I only finished 5 out of 8 rounds of oxali. I was very tired and didn't feel well. I am probably a world expert on anti-nausea meds. Dehydration was a constant problem, so I went in between treatments for fluids. As the treatments went on I got much better at managing the side effects. They took me off the oxali when the numbness in my hands and feet didn't go away between treatments. It has since gone away.

I am currently 15 months ned.

Whatever, you are envisioning the chemo to be like, it will not be that bad. No one would choose it, but it is doable and you will not be throwing up randomly, losing hair in chunks, if you are like many it will be merely a little rocky, if you are like me - you will get to eat lots of dessert and not gain any weight. The chemo treatments themselves are long and boring.

You will be fine!! Keep your sense of humor and enjoy the good days (hopefully, most of them will be), and keep the end in sight.

The group on this web site are great.

One of my closest friends went through folfox - 12 round and didn't miss work or a single meal.

Take care of yourself, be easy on yourself, ask for help when you need it and talk to your doctors, nurses, etc. Take the meds they recommend (I learned that the hard way), no one gives awards for toughing it out.

Pam

pamness
Posts: 513
Joined: Nov 2007

I know many here will disagree, but my surgeon, oncologist and internist all told me to stay off the internet (not the support groups), but to not go looking for statistics, etc. They basically said, "it is not written for you and written about you."

I heeded their advice and am glad I did - I was 3A with garden variety adneocarcinoma. I did a lot of reading on the internet after I got my clean CT scan. I am glad I stayed off. It would have scared me out of my mind.

Pam

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Pam, I'm so glad you mentioned this. My GP (family doctor) has said the same thing over and over and over to me. He knows that my job when I was working was all about computers, so he knows the internet is just part of my life. I don't know how many times he said, "The worst thing you can do is run home and get on the internet every time you get a result from a blood test, scan, xray or whatever". I didn't say anything to him, but I thought that was weird advice... after all, knowledge is power, right??

So, of course, I went on the internet and searched for everything I could find... and scared myself so silly, I would cry myself to sleep. I then told him that I had done this and was the reason he advised me to stay off the internet because the statistics say that I may not be around that long and he knew that would scare the heck out of me??? (and then I started crying right there in his office).

He said, "No... the reason I don't think you should go on the internet and get obsessed with finding information is that there is so much information that is wrong on the internet. Anyone can write a report, make up statistics, write an article and call themselves a doctor, with a bunch of letters behind their name. It may look impressive and you will fall for it hook, line and sinker... and this person may have nothing to do with the medical profession but he wrote this because he can." And that's so true... anyone can write anything they want and have it on the internet because the whole thing about the internet is that it is not regulated. No one owns the internet and no one makes up rules about how it's to be used or who can publish what.

Then again, there is just as much GOOD information out there that is written by reliable sources. As a patient pulling up all this information, you really have no way of knowing how to determine which is accurate information and what isn't.

I'm a firm believer in educating ourselves and asking questions. Always ask questions! Talk to doctors. And, I'm not sure how it works where you all are, but my oncologist works out of the BC Cancer Agency... and that building is amazing. It has services and programs for patients over and above what their doctors arrange for them. It also helps that the BC Cancer Research headquarters is in a brand new building right next door to the BC Cancer Agency... and between the two buildings, they have opened up their library to patients, and patients can go (like a library) and look up research papers in person.

I know not everyone has that opportunity, hence the internet... but please be careful what you read and what you believe.

Huggggs,

Cheryl

Julie 44
Posts: 479
Joined: Oct 2008

Thanks to everyone for the info..I am glad you set me straight because you do come up with alot of horrible stories from people which you don't need to hear..Going tomorrow to find out when I start chemo and what treatment I will need..Scarey but like someone said needs to be done. I want to get back to my normal life (whatever that is now) Hugs to all

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

G'day Julie,
Good luck with the treatment. You have chosen to survive. Believe it and do what you have to. I'm a stage 3 (6 lymph nodes) survivor ,this coming jan will be 11 yrs ca free. My best wishes to you and your family. Ron.

hopefulone
Posts: 1048
Joined: Jan 2007

Hi . Can't add much to what's already been said, except to say stay as positive as you can. Be your own advocate and ask lots of questions. It's normal to be scared, Everyone's experience can be a little different with the disease and the treatment. Wishing you good luck for a smooth treatment plan and great results. God BLess,
Diane

Subscribe to Comments for "Scared Newbie"