5Fu ???????

captainhop said:

MARY---So Glad......
Thanks, Mary.

And, to everyone.....when this BEAST was, shall I say "New" to all of us, did your families seem to steer away from mentioning it or talking about it? I want so much for our sons to understand what this really is, what it could and couldn't be, what is done for it, everything they can learn about it. I'm doing a crash course on learning, so possibly I can answer some of their questions, but they just won't talk about it.........

Almost like it's taboo..........like they shouldn't mention it or ask questions. How did some of you get family members to start involving themselves?

We know we have their love and support, but I'd like for them to get more involved. Am I asking too much here? I truly don't know.

Thanks in advance,
Marygale

Family and Friends
I have found that friends tend to be a little more open and willing to discuss than family, but then I have never been super super close to my siblings so it's not like we have had serious discussions about much of anything in the past. This is not to say they don't care... they just don't know how to bring up a serious discussion and share... as well, like Mary said, they don't want to face some of the possible realities. In a way, it's very similar to how we face the beast ourselves. At first, we can only take in so much and our brains shut down... we hear the word "cancer" and we don't hear anything else. I don't know how many times (and it has been numerous) when I will tell a friend that the doctor has told me something and I am SHOCKED! He/she said it as if it was something I was suppose to have known and this is the first time I've ever heard about it... and then my friend will patiently say, "No, Cheryl... it has just slipped your mind. You told me this 3 months ago when you had the such-and-such appt. and got the results." Sure enough, I will confer with one or two other friends/caregivers to see if this is news to them, and no, they know about it too because either they were with me, or I told them myself.

That always blows me away! How can I have known something, and mentioned it to others and yet, 6 months later it's total news to me?? But, our brains work in mysterious ways and it's amazing what they will do to protect us from too much information-overload.

So, my family (and I'm sure yours and everyone else's) is in that protective mode. They want to hear what is going on and that everything is going to be alright... but they shut down if it's information they don't want to hear or can't handle. There's also the added factor of fear... they are afraid that if they ask too many questions, they might make Hop feel miserable, sad and scared. If you tell them, "Don't worry, your questions won't scare/terrify Hop, he gets that when he talks to the doctors. There's nothing you can say that will scare him anymore than he has been" well, you know where that's leading... they will be terrified every time they hear Hop has to go to the doctor, knowing he may be getting terrifying news.

It's a tough tough time no matter what side of the beast you are on. The bottom line, everyone knows Hop is going through a very scary time and no one wants to say/do anything that will make him feel worse. They want everything to go back to where it was before anyone knew about the beast.

So, what I do... and this is for family and friends who want to know what's going on but don't want to feel they are bothering me with everyone asking the same questions over and over again...as well as for friends who live out of town and aren't close by to know what's going on... I maintain a blog -- http://ourcheryl.blogspot.com -- and it is accessible to anyone who is interested in it. It's also convenient because they can read it at their own convenience, whether it is every time a blog entry has been entered or catch up on reading a couple at a time. This blog is not to only talk medical jargon, medical treatments, appointments, various doctors' opinions, etc. (could you imagine how dry and boring that would be for the reader???)... no, I write it as a journal with the description of what it's like to be on a journey with Stage IV Cancer. Yes, of course I write about what treatments I'm getting, what the side affects are, what I'm feeling on the day I'm doing the blog entry, what treatments/options are coming up, whether I really like a particular doctor, or am not impressed with the attitude of another one, etc.... but it's also all about what else goes on in my life. Where I'm going, who I'm seeing, what I'm doing on a day to day basis and how I'm juggling the day to day fun stuff/chores/social stuff with the schedule of doctors/hospitals/treatments... so that it ends up just being a normal, every day journal. Someone else may be going to the dentist today and off to pick up a prescription at their doctor's, before getting ready to go to a movie with a friend and out for dinner. Well, that's me too but instead of going to the dentist, I've gone to my oncologist... and stopped at my family doctor to pick up a prescription refill. Along with the entries, I include lots of photos (the joys of having a digital camera)... so anyone, family or friend, who reads can see for themselves that my life is as normal as anyone else's (the majority of time what I hear is... "How the heck can you do so much day in and day out... there's no way I'd ever have the energy you do!!"), and totally normal for me, because I've always been this way!

I really do think that takes away a lot of the fear when they can see/hear for themselves that you are not on your deathbed, that you have no intention of being there anytime soon, and they can read on a daily basis what you are up to so it's not like you are hiding anything from them.

I remember having one discussion with my Dad and sister about the stages of colon cancer with Stage IV being the last stage. Not last as in, it's all over once you hit that, but last as in... there are Stages 1 - 4, so it is the last of the 4 of them. At least, I thought I had got that message across. I had explained (I was Stage III at the time) that if one gets diagnosed as a Stage IV, then it means the cancer has spread to another area outside of where the primary cancer was found. They understood that, no problem. Well, sure enough, last March, we found that the cancer was in my right adrenal gland and at least ONE spot in my lung had lit up the PET scan. So it had spread to my lung and my adrenal gland. Guess what? That makes me a Stage IV.

Now I never did come right out and say in words to my dad and sister, "Well, now that we know about the spread you do realize this means I'm a Stage IV." I just assumed they would know this because both of them totally understood the discussion we had had a few months earlier about the 4 different stagings. When my friends had the tribute show for me at my Celebration of Life and Friendship party and I had to get up and talk... I told everyone where I was at, that I was a Stage IV, but that I see this as a dare... not a finality. Well, afterwards both my dad and sister were shocked. "YOU have never told us you were a Stage IV!!" Hello?? But that is exactly what goes on with family, friends and even us, the patient... we hear but at the time if it's too much information, we don't hear. We speak, but it's quite possible that the listener is not able to absorb the information at the time. And that goes for everyone.

So, just accept the support and love they give and don't be too surprised if they can't get more involved than what they are currently doing. It is hard on everyone involved and we all handle stress in our own ways.

Huggggggggs,

Cheryl

dorookie said:

Just food for thought
Marygale,

From my experience the first time I was DX, I didnt want to talk about it. I just went through the motions, just went through doing what I had to do to get through this. To me it was nothing other then a bump in the road. I didnt talk about it at all with anyone really, unless it was a day I just couldnt keep from crying and someone was around, then I talked a little. I guess I was in major denial the first go around. Now with the reoccurance, its really hit me harder then the first time. To me now I had to face the fact that it was real, that it was happening to me and my family. I couldnt shut them out anymore, I had to talk, and I am now realizing I need to seek out someone other then my family to talk with, like a counselor.

I guess what I am trying to say is that Hop might just not want to talk about it, he could be like me and in denial. I know all of this is so new to you guys, and to be honest the last thing I wanted was someone pushing me to talk. But now that I look back, I wish I had talked, I have so much pent up anger now its causing me alot of pain inside. Not physically, but emotionally. I kept telling myself, hey I am a cop, i can handle this, just do what you got to do, well when it came back, I had to realize real quick I wasnt in control after all.

I am sorry I am rambling some, I just know how Hop is feeling and I feel his pain and fear and I know how hard it was for me to talk. I want so badly for Hop to be able to talk to you, but I can understand his side too. I was stubborn, no one was going to make me talk no matter what! So they just gave in and I spent many months going through treatment without talking about it, dont let that happen to Hop. I have read your not supposed to push a person to talk, but from my experience, I wish someone would have pushed me harder. Not saying it would have worked, but wish someone would have gotten through to my thick head.

Okay I am done. Sorry for rambling. Just some thoughts.
Beth

Rambling
And a fabulous ramble that was, Beth!! Hoooooray!!! I'm sooo glad you feel comfortable now to just come here and spill it out in a post or mutiple posts... and at the same time, show the rest of us there are many facets to this beast. There are people like me who just naturally ramble, talk, work things out verbally or in writing and the more scared, confused we get, the more we ramble, talk and write. For me, putting things into words, be it verbally or in writing is very cathartic... and I think part of that (oh, I'm such a drama queen!!) is that someone is reading these words and saying, "Oh, ya... can I ever relate to that!!" or "I know exactly what you are going through, here, let me tell you something you might not know..." and I read everyone's posts like I'm thirsting to death... just absorbing the knowledge I pick up, as well, finding that I'm not alone and that we all have similar stories. And even better... that so many have gone through the same thing as me and have come out fine... either cured or living with a chronic illness that is not the end of life

But there are two sides... as you have pointed out, you didn't want to talk about it, to others or even to yourself. You just wanted to do what you had to do and let's get over this... until the recurrence happened and then it was like you were hit with a brick... or a bunch of bricks!! Now what to do??? If your comfort zone is to not talk about this, then where the heck do you turn to??

So that is why I am so glad that now you are finding you do want to talk to someone, whether it's a counsellor you can trust, or just coming here and verbalizing what you are going through. And whether you realize it or not, everything you have to say... be it what you are feeling, what your partner is going through, how the people at work relate, the fact that you can't work during treatments... whatever you are going through and feel comfortable about talking about, it DOES help someone else because they will find that they have exactly the same feelings/situations! For all of us who do post messages on this forum, there are probably 20 people who don't... but they are reading, reading, reading. So we don't even know if we are helping someone who doesn't post, but we all know we help each other who do post... so my bets are there are even more people who don't post but get comfort and information from the posts they do read here.

So ramble away anytime you feel the need!!

Huggggggs,

Cheryl