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what do i do now

ray slone
Posts: 25
Joined: May 2012

my sad story- this past winter i was told i had esophageal cancer the doctors said i would need chem and radation then surgery. i had 5 weeks of chemo and 6 of radation. i afew days before surgery the pet scan came back with bone mets. me and my poor wife have been so upset that we dont even no what day it is. any way i go to the james next week to see what they think about all this. they had said i was stage 2, now stage 4

stephikindred's picture
stephikindred
Posts: 153
Joined: Mar 2012

Hi Ray,
Your story is a sad one. Sadder yet, this story is all too familiar on this site. My mom was diagnosed as Stage 3, then before we were going to start radiation she had a second PET scan since it took so long from diagnosis to begin treatment and that time the scan showed bone mets as well. There are also many who went through the radiation, chemo, surgery and then had a recurrence and are now stage 4. I think this cancer is very sneaky and tiny cells can be hiding in other places. I am very sorry to hear of your diagnosis. You are not alone, and you will find much advice and support here if you seek it. It is very scary, but try to keep a positive outlook and just try to take things one day at a time. It takes a while to come out of the fog once you hear that news, I know! Been there!

Many will suggest you seek a second opinion. If you are confirmed stage 4, you can begin treatment to manage the cancer. This will likely be a chemo regimen along with drugs to manage the side effects of the chemo, like you had when you were planning surgery. If you don't have one already, I recommend you see if you can get a J-tube for for nutrition and hydration as they are key to you now, and try to get some exerise when you can. Live every day to the fullest, enjoy every moment, and take very good care of yourself!

I'm sure others will weigh in and provide their input. We are here if you have any questions.

Hugs to you and your wife,
Steph

jgwright's picture
jgwright
Posts: 252
Joined: Oct 2011

I'm in your same boat with metastasis. Different people respond differently to chemo/radiation. Some, like Chemosmoker chose to fore-go chemo and just live life to the fullest until cancer took him away. Others like Sam Sangora chose chemo and have lived 5 years or more even with cancer.

You must do what is best for you. I'm trying chemo, turmeric, bad jokes, and an upbeat attitude. I'll just have to see what happens.

--Jerry

ray slone
Posts: 25
Joined: May 2012

hang in there buddy, this darn thing is a monster and i am greatful to have found a place to talk to folks about this thing. my wife is taking this so hard she almost cant funtion.

jgwright's picture
jgwright
Posts: 252
Joined: Oct 2011

My wife of 43 years is taking this a lot harder than I am, as well. Filled out some paper work which asked the question: "On a scale of 0 to 10, what is your stress level?" I wrote "Stress level self -- 2. Stress level of spouse -- 11".

And it is true. I love her dearly, but she's always had a problem with depression. Her meds keep it at bay pretty well, but not perfectly. If your wife uses the Internet and Facebook, etc., this site as well as the EC group on FB are great resources to help victims and caregivers cope with this big crappy mess.

--Jerry

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Ray & Jerry:

I did not comment when Ray first posted, but I thought to myself "I know just how she feels". Then Jerry posted about his wife. Now that this is out in the open - I must confess that I think I feel more stressed than Don does too. I don't how that is possible; he is the one with the actual cancer, but there are days for me that it is difficult to move one foot in front of the other.

Some of this I think is because he and I do not talk too much about him and his feelings about the cancer. It's almost like we are ignoring the pink elephant in the livingroom. I think talking with him openly would make me feel better, but I'm not positive about that. I don't want to 'push' him to talk and would prefer that he brings it up to me, but I don't see Don doing that. He is a quiet man, a very selfless man and absolutely backs away from any conflict. I am a more of a 'in your face' person and will deal with whatever head on but I want to give Don his space and his time and I think to myself that if it reaches that 'certain point' maybe then we'll discuss things.

We do have our house in order so to speak - wills, power of attorney, etc. - but to sit down and really talk about this and how it makes me feel or him feel - we have not done that. That is quite stressful to me - trying to figure out what is going on in his head. I know what goes on in my own mind - but I don't know his.

Sometimes I think if we did talk - maybe that would cause him more stress. It is very difficult to be the wife of a man I love so much and know that I cannot fix this for him - I cannot take this away from him, and to think that one day this stupid cancer will very likely take him away from me - it is just overwhelming. I take an antidepressant also for panic attacks and this is a big panic attack- there is no medication that will take away this stress.

So I do understand how your wives feel, but I don't know how we can change it. I am sure Don feels like you guys do - he can probably sense I am stressed but he hasn't told me that - maybe he's told others, but not me. Have your wives told you that they are stressed - or do you just know it? Have you had a deep conversation about your feelings of having this cancer? If so, did she bring it up or did you?

Thanks for your input,
Judy

jgwright's picture
jgwright
Posts: 252
Joined: Oct 2011

If I were you, I'd just tell Don that you are feeling really stressed, and you'd like to talk to him about what he's going through, but you don't want to stress him or push him. And tell him you love him no matter what.

Tonnyo, my wife, is quiet and doesn't like to talk about this, but we do, and we have, and it has strengthened our already pretty ding-dong-durable cords of marriage.

I'm the one who communicates. You can probably figure that out... Because here I am blabbing my brains out on this board.

This cancer is actually rougher on my wife, family and friends than it is on me. "It is what it is." If I survive, that is wonderful, a consummation devoutly to be desired. If I don't, well I believe in the resurrection, and faith is a wonderful thing. But sadly my family would have to go on without me. Again, hey... Who knows what the future holds here on earth. I could get run over by a bus tomorrow. Unlikely, but frankly, this whole cancer schtick seems unlikely to me.

--Jerry

captdave's picture
captdave
Posts: 168
Joined: Feb 2012

Judy, I think that as men and as the ones with EC we've made our peace with it. We have it we cant do anything more then what we are about it so why talk about something you cant change or talk out. I know Edie was more stressed then I was about the cancer surgery recovery etc.. I just knew that I could only control what I could and I had to accept what ever else happened and deal with it and move forward. That's not to say that I didn't do everything in my power to win because I did. As Edie likes to say I always get what I want, I don't loose or if I do I just go right back after it until I win. We that have EC have that ability you wives that don't have it don't and cant face it like we do. I truly believe it is harder for the spouse then the patient. My biggest worry going into surgery was that I had everything taken care for my family and that they would be taken care of without me. It is ironic but I think I tried harder to comfort Edie and tell her everything would be ok then the other way around. Not that she wasn't wonderful and supportive but she needed as much support or more then I did. All the people in the waiting room were there to take care of her the surgeons were taking care of me.

Hope that I made sense and that you understand that I try not to think about but just take action and all my wife can do is think about it.

Dave

Daisylin's picture
Daisylin
Posts: 380
Joined: May 2011

Ray, so sorry that you find yourself here. This disease is devastating for both the 'survivor' and the 'caregiver'. My husband Lee always said that he thought it was harder for me, the one who had to sit by helplessly and watch this beast steal my love away. Sure, I did everything in my power to make him comfortable, but really, other than lots of love and doling out medications, what can we do? Us ladies want to 'fix things' and this is one thing we can't fix with a kiss and a bandaid. We're the ones who have to pick up the pieces, and try to glue them back together. Our little nest is shattered and we can't mend it.

Judy, and all the other silent sufferers, speak up, let your husbands know how sad, depressed, helpless and scared you are. I'm sure they already know it, but believe it or not they want to be there for you too. Tell them what you need, even if it's a hug, back rub or an evening out with the girls. We do need to escape, if only for a few hours, and treat ourselves to a bit of normalcy. I always felt guilty going out and having 'fun', but Lee was totally understanding and always encouraged me to take a caregiver break.

Ray, there is a caregiver section in this website, perhaps your wife would find comfort joining such a group. As a caregiver myself, I found the people here on the EC page so loving, compassionate and informative. I don't know how I would have made it through without them.

Take care,
Chantal
wife of Lee, deceased Nov 8, 2012

ray slone
Posts: 25
Joined: May 2012

your story of love and loss has brought tears to my eyes this early sunday morning. i think about a day down the road my wife may be writing a post about the same things you have. thanks for helping me understand what a caregiver feels. Ray

ray slone
Posts: 25
Joined: May 2012

My wife and i cried together for many days over this. after that i just started thinking that it is what it is. meaning that my live with this cancer will most likely be a shortened life. however i will not let cancer kill me before i am dead. she has gotten her some meds and now we dont see the pink elephant in the living room either. we do talk about it at times, but we do not let it consume us. later if and when i get really sick from the cancer and or treatments things will change i am sure. i wish you and your husband the very best. Ray

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Hi Ray:

You said it all with "I will not let cancer kill me before i am dead." I think I will hang onto that thought.

Thank you and so glad you and your wife are getting on with life!

Hugs and FEC,
Judy

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Judy / Chantal / Sherri and to the wives of Jerry & Ray and to other caregivers,

I'm in tears as I read everyone's words. They are so spot on. I have NEVER had something that I could not fix or at least make bearable. The loss of Nick is NOT bearable and not fixable - and I just can't get beyond that. I'm still trying to find a fix or way to bring Nick back. I know - completely impossible, but my heart is having trouble accepting that.

Like everyone, I think my stress during Nick's cancer was higher than his. But I figured out why - for me anyway. Nick was able to actively *do something* to treat the cancer. All I was able to do was to have a passive role in the treatment. I didn't see my role as his caregiver as an active role in the treatment. It's what I did because I loved him - not because he had cancer. And I did and DO love him - very much.

But like Chantal said, it does help to let our men have an active role in comforting us too. Nick was frustrated - like me - that he couldn't do more for ME. It helped him when I "lost it" and he needed to comfort me. He knew how badly I needed his arms around me and his voice soothingly whispering into my ear. He was still able to take an active role in our marriage and that was good for us both.

Thanks for helping me cry. And realize that my feelings aren't abnormal. And that frustration runs high in the EC crowd.

I love you all and wish the best for everyone. Prayers and positive thoughts to you all.

Terry
PROUD wife to Nick, age 49
lost battle to FEC, June 19, 2012

goty2001
Posts: 71
Joined: Jul 2012

I have to agree it seems my wife Susan is suffering more from my diagnosis (stage IV - spread & inoperable) than I am at present. Just got diagnosis 2 weeks ago - so maybe it hasn't sunk in - although I feel it has. I'm just getting on with what I can - spending lovely time with my family, hoping to remove the stabelizers on the 4-year-old's bike this week, still beating the 14 yr old at table tennis (only just), golfing with the buddies tomorrow, working the day after, and enjoying food despite that nasty lump down there. First chemo is next Wednesday. Hoping I can still do some of these things after chemo ... I won't mind if the eldest beats though - that's his rite of passage. Love to hook up with anybody in a very similar stage of the process & similarly serious diagnosis as I have.
John

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Ray, So sorry you have a stage four diagnoses. So far I have been blessed with four years cancer free after a stage three diagnose. My husband was my nu. one caregiver and he always talked about it being our cancer. He still is so overprotective of me. A couple of days ago I talked to him openly about my feelings. after the initial shock and treatment begin I got my house in order and knew I was okay,no matter what the future held. My husband was there to take care of me but I missed him not openly talking to me. I told him a couple days ago, that I admired his strength and I knew he was hurting, but just once I would have loved for him to break down and let us cry together and talk about the what if's. He thought he was being strong for me. We just celebrated our 50th anniversary but still sometimes have a communication problem. This is the view from a woman EC patient. I'm sure men's are different.

It would help if each of the caregivers would join. There are so many on hear that give great caring answers to most all problems that arise.

Prayers for you,SAndra

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