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How do i cope?

raybees
Posts: 1
Joined: May 2020

Just been diagnosed with colorectal cancer - but do not know the stage.  I only know that 5 months ago i started getting stomach cramps every two weeks or so.  I went to the doctors four times and they gave me a ultrasound which showed nothing. 

I was told over and over its IBS or Chrons and i thought the tests were good enough - until i spoke to someone who had similar symptoms but had colon cancer.  I went to another doctor - straight away he put me in for colonoscopy and mri

I know they found one circular tumor partially blocking my decending colon. I dont know the result of the biopsy or mri but based on the time - i dont think it will be good.

The person who performed the colonoscopy said i should have a good outcome.  What does that mean? can he tell by the look of it?

I am going crazy - my life is on its head. I have not slept for days and have to wait another 2 days for biopsy results. I have allways been very active - a health nut in many ways. How do i deal with this? Suicidal thoughts, emotiions - i dont really have many people i can talk to.  Many must have the same thoughts initially? How do you deal with it? Valium? i am really falling apart here and i have only begun the ride.  

 

Trubrit's picture
Trubrit
Posts: 5139
Joined: Jan 2013

I know you don't want to be here, but you are, and you will benefit from not only good advice, but good friends and people you can talk to, even if it is via computer.  We are all here for you, and will listen and try to respond in a way that will lift you, and help you through this trial.  

I hate to hear people talk of suicide. I have friends who have passed from this, and miss them every day, and I know their loved ones miss them even more.  People love you, and want you here, and I hope that any suicidal thoughts will diminish as you read of all of us that are surviving - me, six years out, Stage IV - and those who are undergoing treatment. 

I'm definitely not going to tell you its a joy ride, it can get very tough, but guess what, you will find out that you are tougher, maybe even tougher than you think you are. 

While I cannot tell you how to cope, I can tell you that there is a way to get through this, and you will find 'your' way. We will all give you advice and you can try some things out, or bypass them if it doesn't suit, but you WILL find your way. 

For me, when I was first diagnosed, my biggest fear was leaving my children. Oh, how the thought hurt my heart, and I cried many tears and looked into the dark many a sleepless night.  I became exhausted through lack of sleep, and I knew it wasn't helping me, so I went looking for help. For me, a reader, I went onto Amazon looking for self-help books, but came across a CD. A guided imagery CD (A Guided Mediation to Help with Chemotherapy - Guided imagery and Affirmations to Reduce Anxiety and Side Effects of Cancer Treatment)  I almost passed it up, as I'm rather hyper, and couldnt' imagine staying still long enough to be guided into anything, but thankfully, something stopped me, and made me put it into the cart and buy it. Oh wow! It saved my life. It worked for me throughout chemo and I will forever be thankful. I went from there to meditation and yoga. 

Others here on the forum will share their life savers, and you can chew them over and see if something will work for you.  

Also - yes, I'm full of it - be senstive to your own inner feelings. Sometihgn may 'speak' to you, even something you wouldn't think might work. 

Right, I will stop my ramblings and let you read others as they come along. 

I just don't want you to think that this is the end. In a way, its the beginning. The beginning of a what could be a long jounrey, a journey into the unknown, but it is not the end. It doesn't have to be the end. Being positive helps the body heal itself - one of many healers.

As for Valium, I would make that one your very last resort. Try some CBD first.  Others have more experience with anti-depressants and I will let them advise on that front. 

Stick with us and we will stick with you. 

Tru

117
Posts: 3
Joined: May 2020

Hi Tru

Do you have the exact name for this CD please. Thank you, I'm scheduled to start chemo May 21 still looking at holistic ways if its possible with stage 4 colon/liver/lymph nodes.

I'd like to use it :-)

117

 

Trubrit's picture
Trubrit
Posts: 5139
Joined: Jan 2013

 (A Guided Mediation to Help with Chemotherapy - Guided imagery and Affirmations to Reduce Anxiety and Side Effects of Cancer Treatment) 

Here is the link on Amazon

Tru

Cindit
Posts: 7
Joined: Jan 2020

hi! 

I see you're into holistic....me too. During treatment i did the following: used ginger aromatherapy inhaler before and during for nausea. If i got nausea at any other time between treatments, i used inhaler and at times put peppermint essential oil on my stomach.  I sucked on ice during the 2 hour infusion to help with the taste after effects, metal or lack of taste, used ice packs on hands and feet for neuropathy and cold sensitivity. All of these worked wonders. I also started zinc supplements for the taste side effects. Many, in fact most of the nurses, who provided the treatment never knew of any of this. They know about cold caps for the hair (i didn't use and my hair has thinned but not enough to need a wig) but they had not heard of the sucking on ice or zinc. Some knew of the other ice therapy. I initially researched the ice therapy because i thought if it worked on the head for hair loss and nerve endings, it should be useful on other parts of the body and it was. Good luck to you! 

abita's picture
abita
Posts: 778
Joined: Dec 2017

For me, my greatest anxiety is in the not knowing. Which is where you are now. You will meet with an oncologist. They will scan you or whatever to see if it spread. Whatever that answer is, they will give you a plan. Then you will still be scared, but you will know what steps are needed. Hopefully, this will give you what you need to set your sights on surviving and what that will take. Chemo is rough. Surgery is rough. But, in my case, the fight is worth it and gives me a focus. 

Good luck to you on your results. Find a support group. Your cancer center should have a list. Support groups have trained moderators, so you will shouldn't hear far out ideas, just people in your same circumstances discussing their feelings and methods for coping. this is a very good group too, but sometimes you have to take info with a grain of salt. So support group really helps.

abita's picture
abita
Posts: 778
Joined: Dec 2017

Also, think like a patient now. Your doctor will absolutely understand the anxiety you are feeling and can prescribe something. People can suggest, but if you have a good doctor and trust them, trust them to prescribe what is best for you. I may go overboard, but I never take anything without my oncologist's permission. I am stage 4, and have chemo, and don't want any bad interarctions.

suzycruise76's picture
suzycruise76
Posts: 125
Joined: Mar 2019

at first:please try to calm down. In life sxit happens...And welcome to the forum,which is full of experienced and helpful people who will help you to get through it.

At second:since you do NOT have biopsy results yet,it is not 100% sure you have cancer (not every tumor is cancerous). When you get the results,the doctor will give you an idea what the next step is going to be. And because he/she had performed colonoscopy very probably MANY MANY times, he/she often can tell what outcome you could have.

I had colonoscopy in January 2019 after almost 3 years of problems with bowel movements,which my PCP considered IBS as well. After the colonoscopy procedure the very pleasant female doctor told me,that I do have a mass in my lower colon,and because she had seen a lot of tumors,she assumed it was low grade slow growing cancer tumor,and she immediatelly gave me hope that it could be beaten. I promised to her on the spot that I was going to fight!

It is just slightly over one year,and here I am surviving 5 weeks of chemoradiation (spring 2019),colon resection plus hysterectomy (because it looked like there was a connection between the tumor and my uterus)in May 2019; I got temporary illeostomy (a bag), which had been reversed in September 2019. My following CT scan showed I was NED (No Evidence of Disease). 

I can't say it had been a walk in a park,but I got through it one day at the time with help of my adult son and several good friends; I know I'll be under control every 3 months for now,and every 6 months later,but I am well and happy and BELIEVE that the ugly disease is never coming back.

I wish you found strenght to calm your mind and got ready to fight with help of your doctors,family members and friends,and keep coming back to let us know how you are doing,OK? 

All the best,

Suzy

SandiaBuddy's picture
SandiaBuddy
Posts: 1059
Joined: Apr 2017

Take a deep breath.  From what you have posted, things do not sound too bad, but even if they are, the sun will rise, the earth will turn, the birds will sing.  Do not miss a precious moment of these occurrences.  You likely have techniques that have helped you through tough times in the past.  Honestly, for me, I got good and drunk when I got my diagnosis.  We all deal with things differently.  If I were you, I would get some exercise, get some sleep, and deal with things one day at a time (and if you are not sleeping, at least you can watch the sun rise!).  Sorry you are here, but there are many of us who thrive despite our diagnosis.  You can too.

Peter_S's picture
Peter_S
Posts: 108
Joined: Oct 2018

At the tail end of 2019 You were me or I was you, I could keep going on like this but it'll get complicated.

Like you, I had been sick on and off for about a year but it kept getting written off as something related to my type two diabetes, it wasn't. A colonoscopy confirmed a tumor and when the Dr told me it was cancerous it was like it's often portrayed in the movies in the sense that all of a sudden it was as if I was under water, I couldn't make out what people were saying, it was a nightmare -- CANCER the dreaded death sentence, only it isn't and it wasn't.
 
I'm not particularly good at giving advice but for whatever it's worth keep this in mind, you're going to get through this, you're a Dragon Slayer you just don't realize it yet because you haven't had the time, nor do you have all then information you need about the Dragon you're about to slay - but I'm telling you it'll be OK. I was beyond terrified crying and screaming, broken and emotionally ravaged - and this was before they told me I had cancer.
 
You'll get all kinds of advice here from folks who've slayed their own dragons, folks who've been in your shoes, feeling that fear, feeling lost and oh so alone. But you're not alone, not any more, not in this room because no matter how many times the health department keeps closing this place down, it opens right back up and when you're here? you're among friends - kindred spirits, we get it because we've lived it and it'll get easier as you take all the laughter, love and hope that you need and it's out there Ray it truly is it's out there to help you through.
 
An old fashioned notebook was a huge help to me, I wrote down every question that popped into my walnut sized brain and brought it to every single appointment I could have used a laptop or tablet but for me, this worked like a charm and it helped to keep me focused. If there's someone who can go on appointments with you that's a big help, if not no sweat you'll still do fine - but if there is someone who can ride shotgun with you once in a while take them up on it, plus you can make them do the driving and pay for the coffee.
 
I was obsessed with "staging" until it was spelled out for me in this very forum that during my surgery they take out some lymph nodes (tiny little things you won't miss em') and those go off to the pathology Dept and if I remember correctly it was a week or so after the surgery that I got my staging -- I was lucky and didn't need chemo or radiation but that can change however, so far so good. A nurse once told me to never forget that every Doctor you meet with is applying for a job I think it was good advice and I would say finding the right Dr is paramount you don't want a surgeon with a mail order diploma, scour the web and get referrals from your Dr because you want someone who lives and breathes colon cancer, expertise in my opinion trumps bedside manner.
 
You'll luck out and find a Doc with both, just keep asking questions. Although I'm sorry you've found yourself here, I applaud you for coming in and for being so honest and direct. We all have a unique physiology so no two stories nor course of treatment are exactly the same. But the resilience of the human spirit belongs to all of us and it's easy too see yours is strong, maybe a bit wounded right now but that's totally natural and normal after hearing the worst possible news in the world - I bet it kind of felt like the elevator doors opened, you stepped in and realized there's no floor - oops. Kind of like that except there is a floor and you're on solid ground.
 
It's going to be OK - keep us posted.
Annabelle41415's picture
Annabelle41415
Posts: 6470
Joined: Feb 2009

Welcome to the board that I'm sorry you had to join.  I'm glad that you got in and followed up to allow you some answers to what might have been your problem.  It's a scary thought to be told you have colorectal cancer.  Right now you have to take a breath and just wait for the reports to come in.  This is going to be a very difficult time with you not know what to expect and what the outcome will be, but once you have some answers you will be able to turn your thoughts and energy to getting through all of this. 

There are many experiences on this board with all different circumstances and situations and can help you get through it.  You are not alone and will always have someone to talk to, if you wish.

Let us know what you find out and we can help you get through this.  Wishing you the best.

Kim

AnneO1965's picture
AnneO1965
Posts: 148
Joined: May 2019

Hi Ray!

So glad you found us. These people are the greatest that ever walked the Earth..

 

When I found out I had cancer, I was shell shocked. I cried when the doc told me, but it really truly didn't sink in until a couple days later. When it did, I have to admit I was numb. I was taking care of my husband who was on hospice, and at that point, I really just didn't care.

The worst part for me was all the "not knowing". I had no idea what chemo/radiation was like. But once I got my first treatment, I decided I could live with it. I had no idea what chemo was like, but after my first treatment I decided it sucked, but I WAS going to live with it. When it came time for my surgery, I was completely freaked out. The idea of having a permanent colostomy bad, scars, and whatever else totally threw me for a loop. But once it was done, I was damned if I wasn't going to LIVE.

It's been almost a year since my surgery. In November of last year I got my first NED. My life has changed quite a bit since my first diagnosis, but in most ways it is better.

I just want to let you know that you are not alone. You have all of us. You CAN do this, you are strong enough. While you are going through treatment, be good to yourself. Listen to yourself, body and mind. 

Please keep us posted, ask questions, and remember to breathe. We are here for you.

Anne

Tom M.
Posts: 121
Joined: May 2019

Welcome, everyone here knows what is running through your mind right now. It sounds like they already said that your outcome looks good. The treatments today are very good. This cancer game changes for the good everyday. Don't panic, ask questions. This board is very good in that you will find comfort, knowlage, and understanding. This has become my support group and now it is your's. We are all one here. May your journey be as easy as can be for you. Stay POSITIVE.

danker
Posts: 1236
Joined: Apr 2012

Call up my history!!  you will find at age 77 I had colon cancer.  It was a bumpy road, but at the end I  was NED(no evedence of Disease).  Here I am 11 years later ( I will be 88 in about 3 weeks), still cancer free living a normal old man's life.  Assume all will work out for the best and just take it a day at a time.  Best of luck to you.

117
Posts: 3
Joined: May 2020

You mentioned at 77 I had colon cancer.  I  was NED(no evedence of Disease)

What treatments did you do to become NED or they just removed your tumor and you had no treatments done at all?

I"m tyring to find others with my similar diagnosis and decide what to do. 

I went to 1stER  3/26/20 double over, ct scan showed mass as colon/liver,they sent me home with 14 day antibotic to treat an infection and told me to call a GI.So called 6 none taking new patients or closed to to COVID.3/18/20 double over again and throw up my museli from the morning, so went to 2nd ER where my nurse friend works and she called her GI doctors.3/31/20 I woke from endoscopy/colonoscopy and was told have 5.5cm tumor and looks like it metastasized,so went back under immediately and they cut out 12" of ascending colon, tumor, part of liver it touched,appendix, gallbladder,27 lymph nodes,16 with cancer in pathology report.5/12/20 will be 6 weeks since surgery.Oncologist and surgeon both wanted me to start FOLFOX chemo 5/12/20 for 6 months every 2 weeks.I put off the port to 5/19/20 and chemo to start 2-3 days after while I try to locate anyone with my same diagnosis to ask what treatments they did successfully and are living past 7 years.Stats I was given is if I do not do chemo 2 years dead.With chemo 70% make it to 5 years and 30% make it beyond 5 years and they are hoping im the 30% but they said I can not put off the chemo as the cells since they were in lymph nodes already travelled in blood stream and microscopic cancer cells can be any where.5/8/20 a ct pet scan was performed,I'm hoping the only area that lights up is the still healing surgical area and no cancer other places light up.I was told about Ty and Charlene Bollinger and watch many youtube videos then saw Dr Daryll wolfe about different options of treatment.

Now I'm all confused

Thank you!

SandiaBuddy's picture
SandiaBuddy
Posts: 1059
Joined: Apr 2017

117, If you review some of the old posts, you will see lively discussions of statistics.  They are hard to avoid, but I think the consensus here is, "I am not a statistic."  There are countless strategies to increase your chances of survival and to increase your quality of life.  Best of luck to you.

Gail E's picture
Gail E
Posts: 19
Joined: May 2020

My diagnosin 2014 was similar to yours. Read about me for details. I'm not NED, but I was for a while. The fight is worth it! Ask me anything.

beaumontdave's picture
beaumontdave
Posts: 1038
Joined: Aug 2013

Boy, do I remember those first days, wound about as tight as I have ever gotten. I suppose you know something more clearly by now, and that, coupled with a plan usually ratchets things down a bit, so I'll hold further comment until I hear where you're at with this diagnosis.................................Dave

flutemon's picture
flutemon
Posts: 22
Joined: Jan 2019

Glad you have found this place of people who have been where you are now and are headed.  I was diagnosed January 2018. I'm in this battle for the long haul and even though I'm stage 4 I believe it's a battle that can be won.  Don't read too much on the internet - so much has changed with treatment and outcomes even in the 2+ years I've been in treatment and the statistics don't yet reflect the changes.  There are more good treatment options than ever before. 

 

Keep coming back!  These folks are uplifting and encouraging.  Let them help you!

117
Posts: 3
Joined: May 2020

HI Raybees

I read your post. Focus on the best outcome and not be fearful, just look for the right choice for you like I"m currently doing now just signing up on here. I've decided to look at this gift as a wake up call. I lived with tremendous stress for a very long time with my career/s so time to look after me first instead of everyone else.

Instead of me retyping I'm cutting and pasting a bit of what I'm going through as I'm trying to find others to decide to do chemo or try holistic against the stats. I want to find someone who has surpassed 10 years with my diagnosis and how they got there. Once they give you the actual diagnosis then you'll know what you need to do next if any thing.

I went to 1stER  3/26/20 double over, ct scan showed mass as colon/liver,they sent me home with 14 day antibotic to treat an infection and told me to call a GI.So called 6 none taking new patients or closed to to COVID.3/18/20 double over again and throw up my museli from the morning, so went to 2nd ER where my nurse friend works and she called her GI doctors.3/31/20 I woke from endoscopy/colonoscopy and was told have 5.5cm tumor and looks like it metastasized,so went back under immediately and they cut out 12" of ascending colon, tumor, part of liver it touched,appendix, gallbladder,27 lymph nodes,16 with cancer in pathology report.5/12/20 will be 6 weeks since surgery.Oncologist and surgeon both wanted me to start FOLFOX chemo 5/12/20 for 6 months every 2 weeks.I put off the port to 5/19/20 and chemo to start 2-3 days after while I try to locate anyone with my same diagnosis to ask what treatments they did successfully and are living past 7 years.Stats I was given is if I do not do chemo 2 years dead.With chemo 70% make it to 5 years and 30% make it beyond 5 years and they are hoping im the 30% but they said I can not put off the chemo as the cells since they were in lymph nodes already travelled in blood stream and microscopic cancer cells can be any where.5/8/20 a ct pet scan was performed,I'm hoping the only area that lights up is the still healing surgical area and no cancer other places light up.I was told about Ty & Charlene Bollinger's and watched many youtube videos then saw Dr. Darryl Wolfe on one and i've clicked on every thing on his site and reached out to him for survivors using the methods they talk about and options of treatment. 

This looks like a great place to connect with others that can relate. Every one I know that has had cancer tells me do the chemo. Everyone I speak to that has never had cancer sez I'd never do it. Chemo will kill you go holistic.

Tyring to figure it out on a short time line for me.

We will be fine :-)

Kelley

 

Trubrit's picture
Trubrit
Posts: 5139
Joined: Jan 2013

Ditch the stats. 

You are you. you will either survive or die. 

You can choose to survive, and then if you die, you are allowed to be shocked. 

On the forum, there are many who are surviving, but they no longer post, choosing to just go out in the world and live. I don't blame them.  I stick around because I want the newly diagnosed to see that some of us survive the odds - the stats.  you may want to know what I did to survive six years with No Evidence of Disease  - NED - eight years diagnosed; well, I can't rightly tell you.  Surgery, chemo, radiation, surgery again. A whole heap of positive energy, yoga, meditation, love from people, love of people, love of life and a damn good set of Doctors.   

How can you survive? That will be up to you, as in the end, it is a very personal journey.  Take from folks here, advice, knowledge and mix it in with your own study, your Oncology teams recommendations, run with it and don't look back. Don't play the 'what if' game. 

Welcome to the forum

Tru

 

danker
Posts: 1236
Joined: Apr 2012

Just click on my name (danker) where I responded to you and it will call up my history.  You will see what I went through to get NED.  It may be a bumppy road, but I"m sure you can do it.  Again, Best of luck!!

Gail E's picture
Gail E
Posts: 19
Joined: May 2020

Diagnosed 2014 stage 4. Just joined the group. Can't say it better than already said. stay strong. peace.

Gail E's picture
Gail E
Posts: 19
Joined: May 2020

In my experience, good outcome usually means that you would respond well to treatment.

Capox Dude's picture
Capox Dude
Posts: 77
Joined: May 2019

I very early on decided that stats do not apply to me.  I mean, they APPLY, but not in the sense that it determines my fate.    Whatever percentages they put out, there are always folks on the good side of the percentage.  And that will be me.   And if I'm wrong, I'll be arguing with Gabriel to send me back because they got it wrong.   Oncology nurses always say the patients with the greater chance of living are the ones with good attitudes and a will to live.   So - pick a side.  Like the line in Cast Away  "I know what I have to do now, I’ve got to keep breathing because tomorrow the sun will rise. Who knows what the tide could bring?"     So keep on with life, because you never know when some great drug or immunotherpay - or cure - will suddenly appear.  I think of my life with cancer as a can I am kicking down the road, with good things awaiting with the passage of time.   Welcome.  The smart, wonderful regulars here gave me great advice and inspiration when I got diagnosed.      Share your thoughts with them and these amazing people will help your thorugh this. 

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