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3 more days till surgery and I am going crazy!!!!!

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

I cannot get past the "what if's"...... what if i wake up and they tell me it has spread to my lungs..... this is why I have been coughing.... my dad just died of lung cancer. What if it has spread to my nodes and is traveling thru my body. I am so scared. All I do is cry and worry. I pray.. A LOT..... Everyone says suck it up... 90% is mind over matter... u gotta be tough to win. I try to keep thinking that... BUT.... then I get sooooooo scared. I know that if they tell me it is stage IV... and has spread to other organs that it is a horrible prognosis. Can that stage be cured? I just don't understand how one day I can be feeling fine ... the next day get a bad stomach ache and go to the hospital with a diagnosis of colitis...then followed by a colonoscopy..... and then tumer which is cancer. WOW.... fine one week and now surgery.... I just am having a hard time grasping this concept. I don't know if you all went thru this same type of crazy stuff but i sure would like to hear your stories from when u first had symptoms to now. I think it would help me. Thank you all so much

Jennie

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

Jennie, Jennie, Jennie!! What you are going through right now is so totally normal. As a matter of fact, if you weren't having these reactions just before surgery, then I'd be concerned.

Now who is being so cruel as to tell you to just "suck it up?" And no, cancer is definitely not 90% mind over matter. Cancer is a very real disease that physically affects our bodies in a big way... which in turn, plays numerous head games with us so that we feel like we are going crazy. But we aren't... we are just going through incredibly stressful times. It doesn't get much more stressful than this.

You asked for stories from when we had symptoms. I think you will find with a lot of people, they had no symptoms. That is why this kind of cancer is such a nasty one... there are no symptoms. Hence why having a regular colonoscopy is so very important... to be able to catch this disease at the polyp stage, before it develops into a full blown tumour.

With me, I had a pain in my left hand side, just below the rib cage. I have a very high tolerance to pain so I didn't notice it at first and when I did, I figured it would go away. So for 6 months it would come off and on... and my doctor would test me for everything he could think of, but it would come back negative. Fast forward to December 2006 and a CAT scan showed an inflamed colon, so the diagnosis was Diverticulitis (inflammation of the intestine). Aha! A diagnosis! So I was put on antibiotics and told that I'd still need to have surgery (resection) but that I could go home, finish the cycle of antibiotics, meet with the surgeon who would do the resection in the spring and otherwise, enjoy the holidays. I met with the surgeon a week before Christmas and he said that since we were not going to do the surgery until the spring, he'd like to perform a colonoscopy to get a look-see for himself... and that's when he found the tumour and it had perforated the colon itself.

So, like you, I thought I had some weird ache/pain and then was diagnosed with Diverticulitis, which should have cleared up with antibiotics, to be followed up by surgery in the Spring....only to be told I had cancer! It all happened so fast, it became a blur!

And that's where you are right now... in the blur phase. How could this be happening? But, my friend, that is just the nature of the beast and you can thank your lucky stars that they have found it! The surgery is necessary and although none of us like to have surgery, it is going to be a huge tool in getting this battle started and maybe even finished.

To be afraid before any surgery is totally normal. But try to relax. I know, impossible... but the more relaxed you are, the easier it will be to recover.

And know that your friends who have gone through this will all be here waiting for you when you get out of the hospital. And we'll hold your hand or answer questions and walk you through each step. You are not alone and no, you most certainly don't have to "suck it up"!!

Hugggggs,

Cheryl

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

For one, it is a real blow/shock/kick in the gut thing to hear. The first thing most of us thought is we're dead meat. Oh, and I had no symptoms and got yearly checkups.
How about what if..they cut me open and see that it's contained.
What if they can remove the tumor and a safe margin and no chemo is needed.
What if you caught it early and it's very treatable?

There are What ifs on both sides, don't forget that. Also, lung cancer is different than colon cancer that spread to the lungs, it's much more treatable. That is what I have been dealing with for the past 3 years.

I went from feeling fine and getting my yearly checkup to finding elevated liver enzymes, to sonogram to CT scan to Stage IV colon cancer in 1 day. That was 5 years ago so to answer one question that you had, a Stage IV diagnosis is NOT a death sentence. Some people get cured, some people don't. More and more people ARE getting cured and others are Living With Cancer. That is what I have been doing for the past 5 years. There is a decent chance that I may become NED (No Evidence of Disease) but I may have a chronic thing not unlike diabetes. While I am not at 100% capacity, I work a 35 hour week, I have 2 young sons and a wife and we live a fairly normal life with the exception of an occasional surgery and chemo every other week.

I know it's a lot to digest at once but the attitude thing does make a difference in my opinion. One thing I suggest is to not look on the internet for too much info. So much of it is outdated and not in our favor. The truth is that will all of the developments in the past 5 years, things have swung in our favor.

Many of us here can help but either sharing our experiences or just being here so you can vent or possibly answer your questions.

Hang in there.
-phil

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Thank you so much for getting back to me so fast. Phil... you are right... I am looking at all the "What if's" in a negative way. It could go the other way. You made me feel much better about a stage IV diagnosis as well. I DID think I might as well start planning my funeral if that was the case. Cheryl... Your words were encouraging as well. I am surprised to find out that symptoms were few to none. I wonder how long this thing has been growing in me. Cheryl .... did they find out yours was outside the colon wall after surgery? That wasn't something that can be seen before is it? My cough and runny nose are almost gone. Do you guys think I still should call the doctor tomorrow?

Jennie

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

Jennie, I had NO symptoms or family history of cancer. I was sucker punched for sure. An occasional odd looking BM but blew it off as the Mexican salsa I ate or something and the incidents were few and far between. Anyway, a Stage IV person living with cancer is not a bad thing and there are a lot of us out there.

I freaked out too at first but after the dust settled my brother, Larry who is great at cutting through red tape and dealing with people in an environment like this, was my advocate. I really credit him with saving my life. I was going to follow my first doctors advice. Stupid me, not even a second opinion. That the numbness I felt. They, through his connections he was able to get me in to good hospital. It's important to feel comfortable with your team of doctors. It's your right and it's an important thing.

So try to stay calm and do bring someone with you when you can so they can take notes and all. Sometimes I actually record visits with this digital recorder I have. I can't remember everything.

OK, I babbled on here. I hope I was of some help
g'nite all
-p

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

There ya go... I can tell by your words that you are feeling a tad better. But do not be surprised if you have these "anxiety" attacks periodically. They just happen and the thing is... if you find they are happening so often that you can't function, then talk to your doctor. There is no shame in being prescribed anti-depressants or anti-anxiety meds. Or, I'm not sure where you live but if you are in an area where there are a fair amount of resources, it probably wouldn't hurt to see if you can find a therapist who has experience talking to folk who are battling this disease. Everyone is different with what works for them but the main thing is do NOT sit at home and let the anxiety or panic take over. I sometimes swear that anxiety and stress is way more dangerous and exhausting than the cancer or treatments for the cancer.

Now, let's see... you asked did they find yours was outside the colon wall after surgery? No, my surgeon (who is my absolute hero in all of this) found that the tumour had perforated the colon wall when he did a sigmoidoscopy (basically a much shorter version of a colonoscopy). He could only go up as far as the sigmoid colon where the tumour was... it was too dangerous to try and go around it. It was during this procedure that he found the tumour, found that it had perforated through the wall, and found out that an abscess had formed around the tumour outside the wall. I'm not sure how, but they also found that because of the abscess and the perforated colon, I had perotonitis (infection throughout the abdomen). In other words, I was a MESS in there! In the words of my surgeon, "Cheryl, you are one very, very ill lady" and he didn't want me to leave the hospital. He wanted to admit me right there and then. But, I was in shock... at this point he couldn't say 100% that this was cancer, he did a biopsy while he was in there and said they wouldn't know until the results came back from the lab, but I had to be in the hospital because of the severe infection (which was the cause of the pain).

In my shock I insisted on going home. I had to make arrangements for the care of my dog while I was in the hospital!

So, first things first... the had to clear up the infection before they attempted surgery. I was three weeks in the hospital hooked up to IV antibiotics, IV pain med, and the IV liquid nutrition, before I had the surgery. After the surgery, he told me that the tumour was quite large (he gave me the measurements but I don't remember off the top of my head) and that I would have had to have it for at LEAST 10 YEARS!! It would have started when I was about 40 years old and at that age, with no history of colon cancer in my family... it never dawned on me to have a colonoscopy. To tell you the truth, I don't even know if I knew what a colonoscopy was when I was 40.

Anywho... what I'm trying to tell you here... I thought I had Diverticulitis which was going to be cleared up with antibiotics. I went to the hospital so my surgeon could see for himself that it was diverticulitis... only to find out I was a complete mess. With the large tumour having perforated through the wall and all that infection, things were not looking good for me... and yet, here I am, 2 1/2 years later living a totally fine life. I am not cancer-free... I'm one of those who is living with cancer. I have nodules in both lungs... how many of them are cancer, only time will tell. Statistically speaking, most if not all of them should be colon cancer mets... but then, statistically speaking, I should have been dead by now if we went by statistics.

So, it really doesn't matter what they find or how good or bad it looks because everyone is individual and their systems will react or won't react to certain treatments. So one keeps fighting until the find the perfect fit in treatments.

One step at a time! Tuesday is the first big step! Yes, I would tell your doctor about your cough/runny nose and you can also tell him that it appears to be almost gone. He may say, without seeing you, that that is fine ... or he may want to see you himself.

But don't you worry... the biggest worry is worry itself... and those anxiety/panic attacks that creep up on you. When you have on, just tell yourself, "Ah, yes... this is one of those panic attacks they were telling me about!" :)

Huggggggs,

Cheryl

Annabelle41415's picture
Annabelle41415
Posts: 6549
Joined: Feb 2009

I went into the doctor thinking I had hemorrhoids with a little blood in my stool and pain when I sat, but nothing severe. He scheduled me for a routine colonscopy (my first since he said I needed one because I just turned 50) and after having it I found out I had a tumor and it was cancer. I was devastated, but I'm getting through it one day at a time and help from this board. You can't help thinking about the "what if this" syndrome. It happens to us all. We are only human and we think all possible thoughts. I just had surgery and have had my rectum removed due to rectal cancer and had a j-pouch constructed and I have a ileostomy and I am in pain every day but I know it will get better and I will get better. Colon cancer is not a death sentence anymore so never think of it that way.

Keep your head up - it will get better. Kim

greybeard's picture
greybeard
Posts: 24
Joined: Apr 2009

I went into surgery thinking I was having my appendix removed. ohh what a hoot to wake up to find they have done a hemi-coloctomy instead. I was 42 years old, great shape, I had never even had an IV before. since that day I have had three rounds of chemo, two rounds of radiation, all of which amounted to zero effect on the tumors, and four major surgeries. I had my last surgery in which they performed a whipple procedure along with the removal of more cancerous tissue from around the lining of my intestines. that was done on the fifth of last month or about 7 weeks ago. It has been a total of three years since my first diagnosis and I can tell you that speaking for myself only I went through the gamut when it comes to emotions fear, anger, sorrow, depression, denial.... I hit em all. and that part about staying tough and keeping your mind positive used to drive me crazy. I know that positive thinking is a asset, and I do believe that it helps not only in coping but in some ways fighting the cancer itself. but you cannot beat yourself up over moments or even days of doubt, or fear, or depression. I haven’t talked to anyone who didn’t go through in some way what you are going through. no not exactly we all deal with things in our own way, but you will find enough similarities in other peoples experiences to know that you are not going crazy. you are going to be very surprised at how much you hear about cancer now, and I mean from areas you don’t expect it from. I wish for you strength, and hope. may you never find yourself thinking you are alone in your battle, their are people who care so don’t let that happen. And always remember to celebrate when you can, and don’t be to hard on yourself when you cant.

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

NanaB.... that is a really wonderful poem, on so many levels! And to think you came across it 30 years ago. Back then you probably read it and thought it was a nice poem but didn't realize just how wonderful it was... and that 30 years down the road you would be able to share it with many, many others who could really find hope/healing in those words.

Thanks for sharing it with us!

Huggggs,

Cheryl

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