Intro -

phuckcancer

I'm so thankful for the internet. Thankful for the information available (even though sometimes TOO much information) as well as the communities and support groups that can be found.

Almost 3 weeks ago, after excruiating pain for weeks, we found out my husband has cancer (colon w/mets to liver). It was an absolute and complete shock and our lives have been turned upside down (as I know you all know far too well).

I am and will be his caregiver and he starts chemo next week.

I'm an emotional wreck and everyday is like a rollercoaster. What to say, what not to say, what to do , what not do, reading info, reading too much info, thoughts constantly invading and taking over my brain.

I just wanted to introduce myself and thank each of you ahead of time for listening, responding and supporting.

JanJan63

Welcome! Love your username.

Welcome! Love your username. Every time I go to the cancer clinic I look at this tree they have apinted on a wall and there are cut out paper leaves that people are supposed to wrote inspirational messages on. And every time I fight an overwhelming urge to write your username on a leaf and pin it up. Excpet I'd spell it the correct way, ha ha!

Anyway, you've come to the right place. You'll get lots of real information, not the crap that can be found in Google or shared with you on facebook by well meaning friends. Lots of great advice, too.

I'm sorry you're here. As much as I love the members on here I hope that soon we'll be able to just disband this page because there will no longer be a need for it. Wouldn't that be wonderful? Cancer's gone, peace out, have a great life! Until then we have each other. Having cancer has shown me the worst in people and the best in people. Some of the best are on here.

Jan

 

Lovekitties

Welcome to the board

So sorry you had the need to find us, but you have landed in a place where patients and caregivers willingly share experiences and offer emotional support.

I suggest that you get a notebook to keep a diary of this process.  It should be a place where you enter changes in hubby physical and emotional being so that it can be shared with the medical team.  Nothing is too small to note...a slight fever, depression, anger, rash, etc.  Also use it to record info about treatments and visits, so that you can refer to the notes when you need to.  Also it is a place to write down questions you want to ask of the medical team and the answers you get.  You will find it an invaluable resouce as you go on this journey.

Statistics on the internet is one thing that I would recommend you avoid.  Two things about them...they are based on data which is old and may not be influenced by today's medical options...there is always a positive side to any statistic, even if it is the lower number...no reason why hubby can't be in the "good" group.

As a caregiver it is important that you take care of you, so that you are in best condition to help hubby.  That means your emotional health as well.  See if there is a caregiver's support group in your area.  If not, or you are not a joiner of such things, then be sure to keep up with your own medical appointments and keep your doctor up on your emotional well being.

What to say or do depends alot on your relationship prior to this diagnosis.  Open communication is best in determining any boundaries.  You may also find some times when you feel the need to over rule hubby when it come to discussing things with the medical team.  Help him to understand that if it is an issue you feel strongly about or have great concern about, it can't hurt to discuss it.  Delay of sharing info with the medical team, can cause serious issues.

Wishing you and hubby the best outcome.

Marie who loves kitties

phuckcancer

@Jan - Thank you so much and

@Jan - Thank you so much and yes, it would be wonderful if we didn't have to be here at all but so glad it is available

@Marie - Thank you, I am glad I found you guys!
Luckily I am a pretty organized person so I have a notebook sectioned out with all conversations, questions, dr appt's, calendars, etc...
however I have been thinking about writing a journal or private blog.

JanJan63

phuckcancer said:

@Jan - Thank you so much and

@Jan - Thank you so much and yes, it would be wonderful if we didn't have to be here at all but so glad it is available

@Marie - Thank you, I am glad I found you guys!
Luckily I am a pretty organized person so I have a notebook sectioned out with all conversations, questions, dr appt's, calendars, etc...
however I have been thinking about writing a journal or private blog.

The journal is a great thing

The journal is a great thing to do. I never did and I sure wish I had. I can't remember which chemo I had at what date and how many rounds, lots of things like that. I ended up with so many doctors to go see that I've forgotten half of them. Questions come up on this board and I don't have an anser because I don't remember and didn't take note. It may have just been my way of dealing with it. 'Writing it down makes it real and it's information I won't need later because I'm going to beat this' may have been my frame of mind, I'm not sure. I'm a big list writer and I keep track of everything so I'm kind of surprised that I didnt.

Jan

beaumontdave

Welcome pc, I've been

Welcome pc, I've been thinking about putting fc as a tat on my shoulder above my wife's memorial tattoo, making it real ornate so you'd have to look at it awhile to get it. Anyway, there's lots of good people and good advice here, and we talk about the stuff unaffected people don't want to hear, so feel free to speak your mind...............................................Dave

Eryan330

Hello

i also suffer from colon cancer but I just finished my last surgery and my treatment has come to an end.  It all began 11 months ago and you were entirely correct in saying it "turns your life upside down". What I would like to pass along is 

1.  Be your husbands advocate. Question doctors, they might not like it but tough sh$&, question every treatment and ask if there are alternatives

2.  Remember that there are a lot of negative things on the internet that will scare the hell out of you. Most internet stuff if people looking for solutions to problems. Not too many people posting "I have cancer and I feel great!"  Just read each post with a grain of salt

3.  As the caregiver, you have taken on the responsibility of the greatest job on earth. (I thank God every day for my wife!).  You are about to go through a journey that is going to leave you mentally, physically and spiritually exhausted and at your wits end.  When it becomes too tough break it down to day by day, or hour by hour or minute by minute if need be.  Take care of yourself.  Your no good to your husband if your wiped out, not sleeping or eating right  You need someone other than your husband to look for support too.  This is going to be difficult but you can get through it. It's 99% mental. Stay strong!

Take care and just realize that your in the beginning stages.  It's a long ride to the end of treatment and there's gonna be a lot of obstacles to overcome. Stay strong, pray if you believe, and allow others to help you.  Never turn down a helping hand. God bless

phuckcancer

Eryan330 said:

Hello

i also suffer from colon cancer but I just finished my last surgery and my treatment has come to an end.  It all began 11 months ago and you were entirely correct in saying it "turns your life upside down". What I would like to pass along is 

1.  Be your husbands advocate. Question doctors, they might not like it but tough sh$&, question every treatment and ask if there are alternatives

2.  Remember that there are a lot of negative things on the internet that will scare the hell out of you. Most internet stuff if people looking for solutions to problems. Not too many people posting "I have cancer and I feel great!"  Just read each post with a grain of salt

3.  As the caregiver, you have taken on the responsibility of the greatest job on earth. (I thank God every day for my wife!).  You are about to go through a journey that is going to leave you mentally, physically and spiritually exhausted and at your wits end.  When it becomes too tough break it down to day by day, or hour by hour or minute by minute if need be.  Take care of yourself.  Your no good to your husband if your wiped out, not sleeping or eating right  You need someone other than your husband to look for support too.  This is going to be difficult but you can get through it. It's 99% mental. Stay strong!

Take care and just realize that your in the beginning stages.  It's a long ride to the end of treatment and there's gonna be a lot of obstacles to overcome. Stay strong, pray if you believe, and allow others to help you.  Never turn down a helping hand. God bless

@Dave -Thank you and  I love

@Dave -Thank you and  I love tat idea! You should totally do it

 

@Ryan- Thank you and for sure am the questions asking one  I'm going to do my best to take care of myself even though there is a little guilt in that feeling. ya know?!

vtspa6

Sorry you are here.  That

Sorry you are here.  That being said this is a very supportive forum to be on and very informative.  Any questions you have there wil always be someone that can help you.  I am also a caregiver.  My husband has rectal cancer with mets to the lungs.  Found out last July.  I was a basketcase for months but during time you will settle in with the cancer life.  Not the best life, but doable. 

phuckcancer

vtspa6 said:

Sorry you are here.  That

Sorry you are here.  That being said this is a very supportive forum to be on and very informative.  Any questions you have there wil always be someone that can help you.  I am also a caregiver.  My husband has rectal cancer with mets to the lungs.  Found out last July.  I was a basketcase for months but during time you will settle in with the cancer life.  Not the best life, but doable. 

@vt - thank you for the

@vt - thank you for the welcome! it is a whirlwind right now. constant craziness. I'm sorry you guys are dealing with this monster also

heisenberg

 
You or a loved one getting

 

You or a loved one getting a cancer diagnosis is literally a traumatic event. See if you recognize any of yourself in what they say on the page linked below. Recognize that what you are feeling and experiencing, while terribly unpleasant, is normal and part of a process. Your psyche will adapt in weeks and months ahead. 

 

http://www.helpguide.org/articles/ptsd-trauma/emotional-and-psychological-trauma.htm

phuckcancer

heisenberg said:

 
You or a loved one getting

 

You or a loved one getting a cancer diagnosis is literally a traumatic event. See if you recognize any of yourself in what they say on the page linked below. Recognize that what you are feeling and experiencing, while terribly unpleasant, is normal and part of a process. Your psyche will adapt in weeks and months ahead. 

 

http://www.helpguide.org/articles/ptsd-trauma/emotional-and-psychological-trauma.htm

@heis - ty! great article...

@heis - ty! great article... and I need to keep in mind I don't have to share everything : X  (not meaning here but in daily life)

You don’t have to talk about the trauma. Connecting with others doesn’t have to mean talking about the trauma. In fact, for some people, that can just make things worse. Comfort comes from feeling engaged and accepted by others.