I feel I should explain my current emotions

[Nik Colon]

First of all I would like to say that I am talking on my phone so any words that get jumbled or whatever its my phone anyway I guess I just wanted to go from the start to finish and try to make it as short as possible so anyway you can see my signature and I'm sure most it can see or know some of my story but yes I was diagnosed in December kind of out of a fluke incident and the funny thing is is I have been going through a lot of tough time for years and many years not just a couple of years so I guess when I finally found out I had it i didn't have the normal reaction which would have been scared upset or crying or whatever but I left right after my colonoscopy i went out to eat. Like I said then I had my CT scan and found out about my liver and again I was like okay and then I was like so I'm automatically stage 4 still no big deal to me just felt like well I gotta do what I gotta do, of course scared of chemo actually the first one but then I had it and it wasn't a scary as I thought still not good but whatever, then by my 4th the oxi had to be cut out because of bad side effects, then after that I had my surgery to remove the cancer in my colon and liver which right after was not very pleasant, but within a day or two it was no big deal. went home took it a little easy blah blah blah. so then after of course healing time I started feeling better but then of course I had to start chemo again this time with irinotecan which I was even more nervous about cuz I'm in the some of the side effects including hair loss so I was just hoping it wouldn't be that bad but yeah it sucked I felt crappy, hair loss and all the other side effects but anyway so fast forward to today I have 2 treatments left without the irinotecan and I don't know if it's the fear of ending or the fear of it coming back or just the damn side effects from chemo I mean I literally can sleep over 24 hours at times maybe get up for a couple minutes to go to the bathroom but sometimes I am just so weak and feel so crappy I don't even want to get out of bed I don't even want to go get my pain meds because I just want to lay there, anyway it's just really been getting to me and then last night and i guess what really even set me off more was I was outside in the garage having a cigarette and felt like gas or something which is normal and it was horrible diarrhea that I could not even control so it just kept coming out getting everywhere. I ran upstairs had to take my pants off and shower, had to ask my husband to clean up my mess oh and this is not the first time that I've had an accident but this was the most severe and I just don't get it its far as I know how does this happen I mean it was my colon and ever since I can't hold in my gas and I have to worry about accidents I feel like I'm just stuck at home I don't want to go anywhere for fear of this shit happening, on top of that half the time I'm just too freaking tired or feel like crap and it's just getting to the point where I just can't deal with it anymore. I can't wait for the chemo to be over but then of course like everyone we have to get CT scans every few months which obviously get less and less but this goes on for years and then of course the fear of it coming back. I don't know I guess maybe it's just hitting me now the reality of all this and feeling like you're never going to be normal again so anyways I guess I just wanted to give a little bit of how I'm feeling at the moment I know it doesn't compare to a lot of people and a lot of people have it worse, some it's going to be forever. I guess I just I don't know how to feel anymore

[Annemiek]

Dear Nik,
It's good to get your emotions out, you have been brave and curageous all along. Don't worry about what other people say so much and try to free your mind by letting it out. All the hurt and pain have to go somewhere, better out than in, that's what I say! ( quote from shrek the wise oger)
But I would like to suggest again you also visit a therapist, to try and make sense of what you feel and how you can come to terms with all of this.
it helps to relieve your mind and might keep you from feeling you are going nuts, believe me you are not and all you are feeling is very recognizable!

Big hug,
Annemiek

[Nik Colon]

Ty Annemiek

[Badass]

Hi Nik,
Just want to reassure you that the Irinotecan's nickname is, "I run to the can" (thanks, Brownbagger!). I had the same problem (uncontrollable diarrhea) when I was on it and it cleared up after I finished my course.

As far as your feelings-- we all have our own unique rhythms in taking in and processing this overwhelming diagnosis and medical experience. Let yourself have your own feelings as they arise. It's great to feel like you are "handling it," but it is equally important to include the intense emotions that come and go as well. This forum is such a great place to bring those feelings because we all "get" it. You will feel better-- but sometimes you got to go through it (not around it) to feel better. You are in the thick of it now!

Best to you!

Jane

[Willow.NZ]

You have been through so much physically & emotionally....reading your post made me think of an athlete nearly at the end of a marathon and feeling like they can't make it. But if you were not strong & courageous enough to get through this you wouldn't have made it this far. I'm truely in awe of ppl like you that can endure what you do to survive & live. I hope this tough time passes soon. Xx

[JDinNC]

We all know and understand what you are going through. You have got to understand that you are receiving treatments that's wreaking havoc on your body. We know how frustrating this is to you now, but you will soon get back to " normal ". Right now deal with one thing at a time....try not to think about recurrances I know it's easier said then done but you need to think about now not what will happen. Just you expressing your thoughts and problems shows you want to fight this...and you are asking for help which is good. Though you still need to find a support group to guide you through all of this. You are young so your emotions are scattered in all directions. Listen to the veterans on this board who are continuing to fight this battle...cause there is hope

[cathy123]

You have been thru so much - I think it is natural for it all to hit you. Only a few more sessions of chemo right? Hang in there, and vent as much as you want.

[canadiandaughter]

I hope things get better for you soon! We all handle things differently and there is no right or wrong way when it comes to cancer. It sucks!!! I know even as a care giver I have days when I just want to scream so I cannot even begin to imagine what it must be like be the one with cancer. We don't judge here. Sending lots of hugs your way and just don't forget to breath when things get bad!

[curious56]

Nik, are you by any chance taking steroids - like prednisone or dexamethasone? Steroids are commonly prescribed with chemotherapy. Steroids can save your life, but make you miserable. They tend to really mess with your emotions -- especially if you take them for long periods of time.

Here is a link with more info:
http://www.cancerresearchuk.org/about-c ... s/steroids

[Stanfordmom]

Nik,

I understand all your feelings as I have had all of them. Just hang in there, just two chemo session! Yes, your life will never get back to your old normalcy but you will build your new normalcy in time. Life will still be enjoyable!

Hugs to you and hope you feel better soon!

Sha

[Nik Colon]

Thank you all so much ♡ And yes I get steroids with chemo, the crash is what really sux, not to mention I can't lose the little extra weight I put on, but I know I will be able to lose it when it's done

[Kathleen808]

Nik,
I have no answers but just want you to know that I hope you can get to feeling much better once the chemo stops. You have been through so much.

Hugs to you.

Kathleen

[radnyc]

I feel you. I was there towards the end of my chemo. But, trust me it gets better, it does. One thing I did, and I'm certain it helped, was to stop smoking. I did not touch a cigarette for almost three years after diagnosis. Now, I'll have one or two occasionally and only if I'm having a drink. I think as most of us who smoke or have smoked in the past know, smoking affects our digestive system and makes things move along a bit faster. It's why so many of us enjoy a cigarette and an expresso after dinner, they both accelarate the digestive system, I'm sure you know what I mean. Chemotherapy majorly screws up the process, which is why we end up vomiting or with diahrreah. I suggest laying off the smokes for a while, I know it's hard, but you'll feel better after a while, and you may end up quitting all together.

Best,

Al

[Nik Colon]

Thanks for the replies

[chrissyrice]

You have been through so much and sharing your emotions helps.

IMO you or anyone else "should" not have to "should explain" anything... sharing and needing to share for help and to help others is what we all do.

Nik, I was so sick on chemo I could not even use the remote control .... sleep as much as you can.

I have learned never to trust a fart and I use pads still to this day. I ruined a lot of clothes and would be already to leave the house and boom ... no warning at all.

Funny thing is the last year I was constipated and other than pain this was my only symptom of cancer both the first time in 2009 and recent recurrence in 2015.

I am not sure what chemo I will be doing next ... but your sharing of your feelings and experiences on chemo has helped me to remember that I need to take good care of myself so I can be ready for the next phase of my life.

Thanks for being raw and real in your post... sometimes I think that when we have cancer we have to show this brave face to the world and there's this perception of how we are to live our lives. We see it in movies and tv and the media but it's not real.

You my dear are the real face of cancer and the havoc that it reeks on our bodies, minds, and spirit. Our families and friends are affected too in similar ways. People who come in contact with us mean well but can't really understand and how different it is for each of us with cancer.

Hope is the only thing I hang on to along with the support of people like you and others here on the board. I take what I need and listen to what I hear from the people who post and look for the hope in their words.

If posts get messy and mean.... MUTE. But, raw and real emotions are very helpful to me.

Thanks for real courage to post about the bad days too. Read back through some of the blog posts that members have done and you will see that they have had the same raw and real emotions too.

Chrissy