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Coping

Aussiegirl76
Posts: 15
Joined: Aug 2012

I am wondering if anyone has any good suggestions for keeping positive while a family member is battling ec. Most days I am so busy looking after my 3 children under 5yrs, working my way through long to do lists and chores and routines, I don't get a chance to think about my dad until i go to bed. I take a natural sleeping aid so i am able to sleep ok.
I know we are very lucky that his ec is operable. But he has had pet and ct scans and we are getting results in the next week, then laparoscopy on 21st and surgery on 27th. I find most of the time I can function well, care for the kids (still dont have any enthusiasm for housework but never did!). But the last month or two particularly I feel like there is a cloud over my shoulders. I am not excited about Christmas, I am trying to live day by day so don't want to look ahead too far. Alot of things that i should be enjoying seem trivial and not worth it. I have finished building a lovely new house and should be enjoying decorating it but it seems so unimportant. Some days i feel really upbeat and am in denial about ec and almost forget it. The whole thing makes me feel very sad,. But most of the time I can pull up my socks and get on with it. I am guessing this is normal?
I could see my doctor. I dont think i am depressed. I think I just need to find some ways to be kind to myself and cheer myself up so i can stay positive for my dad.
I know many are going through much tougher times than me as they have lost someone already. I dont want to seem ungrateful for the time i still have with my dad - whether thats months or years. I am trying to make the most of life. I am just looking for ways to enjoy my life a bit more.
If anyone has any ideas, suggestions, books, resources, please let me know. Or should i see a counsellor or my doctor?
Claire

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

Hi Claire,
I know exactly how you feel. I have 4 children, (one is in college) and I used to jog---I lost my energy & desire to do it when my dad started his EC fight 8/09. I found this site & that helped alot as no one I knew had any experience with EC. I couldn't talk to my friends about it. I found one way I could cope is to feel as though I was making a difference somehow. I did that by going to the ECAN.org (Esophageal Cancer Action Network) and began sharing their information with every one I knew. Then I helped for the past 3 years to get first my sy state & then upwards of 30 states' Governors to declare April as Esophageal cancer awareness month.

That being said, I'm still sad, having lost my dad last November. But I see glimpses of hope & inspiration through little things--like my kids, husband, family, nature and my church. I am inspired by the ones on this site that genuinely CARE FOR each other & want to help---I love you other post about being around for other newbies--- That is what I thought when I read your earlier post--we need to fight for this site, even if other sites are created. The newbies deserve it.

I never went to a doctor or anything, but sometimes wonder if i should. Taking walks with the dog, my husband or by myself also helped me cope. It is hard. But one can always come to this site & share---and unload. WHen you do, you preserve a little more of yourself, so that you can share it with your dad & your family. Also---if there are times that you don't want to post for everyone, you can send a (Supposed-not) email message. Then only the recipient (not the whole board) and probably moderator can see it.

Take advantage of your new "virtual" csn friends here. You are not alone .
Hang in there, know that we care
Kim

Aussiegirl76
Posts: 15
Joined: Aug 2012

i am so sorry for the loss of your dad. it makes me really sad hearing of others well loved family members losing their battle with this dreadful disease. But in a strange way i get alot of strength from realising others have gone through my worst nightmare and can survive it. I try not to think what might happen. But i do know that humans are very resilient and we just find a way to cope with whatever happens in our lives.Its not easy, but we can do it.

I admire your work with ecan. i would like to do somthing like this. at the moment though i'm feeling so stretched i have to focus on getting done the things i already have to do. apart from dads diagnosis, our family has been trhough so much change the past 6 months, so my capacity for stress is really being hammered.

I do have some friends who ask about my dad, but i find that now i know so much incredible detail about ec (and really wish i didnt) that its hard to talk to them about it - they mean well but dont really know what to say back, its just a one sided conversation. so now i try just to say, he's doing ok, and change the subject. One person asked recently if my dad "was all better now" - and i was so surprised i just snapped back "no! he's got cancer!". She caught me at a bad time. I dont suppose that my reaction will make her want to ask again!

anyway it does help to know i am not alone.

i would love a pet or dog, but hubby and i cant agree what type so I'm leaving that for a while. animals and nature do help calm us. maybe i will take kids to the park tomorrow.

anyway thanks again for listening
claire

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

My friends often tease me and call me Dr. Oz because I just ramble on and on about my Dad and his medications and all the tests and scans... It's easier to just say simple things. I find myself on the computer or phone checking in here and FB ALL THE TIME. It consumes me, but it really does help to know we're aren't alone... unfortunately. I see how things change for some overnight and it just sorta builds up my tolerance. I'm just praying and being thankful for all the good time we have NOW. Today, I'm taking my Dad to lunch. Let me tell you... I'M THRILLED!! It's funny how much closer we are now. The Beast is evil, but I'm glad we have been blessed with QUALITY time.

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

When we found out my mom has esophageal cancer back in November it's like I started grieving immediately. my sleep patterns became erratic, I kept waking up at 3 AM feeling lost and confused and scared. I spent a lot of time contemplating life and death. Once treatment started I was distracted by focusing on what we had to do next so that was helpful for me. But then with each new scan comes new anxiety and then when we recently got bad news from the last scan it put me right back in the same frame of mind I was in this past November. This disease is truly a roller coaster ride from hell. I think what you're feeling is actually quite normal under the circumstances. There are days when I don't have any joy either and it's hard to get myself motivated to do my regular routines, and juggle work, being a mom, and taking care of my mother. Not to mention all the other curve balls life throws while you are trying to cope with EC. But then lo and behold a new day dawns and out of the blue I feel happy again. Now if your downs are much longer than your ups you might want to consider getting some type of counsel because that's not healthy. We are always here if you need to talk, vent, etc. I really do believe it's important to express your emotions. If you need some alone time and just need to cry, cry. Get it out of your system. That way hopefully you can get back to enjoying life. And enjoy your dad every chance you get. Taking it day by day is exactly what I do and I try not to look too far ahead as well. As you take it day by day remember to enjoy every beautiful moment.

Another member on our board, Ucsf_smile told us her mom used to say, "chin up, buttercup!" I love that, and it somehow makes me feel happy. :)

Hugs, Steph

WifeOfSurvivor2Be
Posts: 23
Joined: Aug 2012

I too started grieving immediately. As soon as I found out my husband had EC, I looked it up on the internet and categorized the cancer to what I read. I can't talk about the future with him.

We have a 4 year old son and all I can think of is his future and the possibility that his dad won't be here. BUT.....he is here today and he is still a husband and a father. I try, some days more successfully than others, to focus on today.
Hi Claire,

I try to remember that life is uncertain and none of knows what the future holds.

I did get some counseling. I do need sleeping pills. 2 things that have helped me are:
1. A rubber band - when I seem to be focusing on the overwhelming and fretting over the unknown, I snap it against my wrist. This reminds me to stop take a breath and focus on what I can do...instead of what I cannot do.

2. As you know, it is MUCH easier said than done to focus on NOW and not what if or when.
I have a "Worry Book" - because I feel most of my worries are normal and valid. If I write them down, they are there and I don't need to keep dwelling on them because I have logged them.

Finally, these people on this site do give me hope. I recognize the courage they have to go on on live there life and that is encouraging. There is sadness here too and some days that is more than I can take....so again...a day at a time.

Positive thinking your way!!

Aussiegirl76
Posts: 15
Joined: Aug 2012

Thanks for your comments xxx

i lost the response i wrote then....not sure what happened.

i think i'm just hitting a bit of a low today. tomorrow is a new day

and i will try the worry book idea. and start walking. and maybe think of speaking to a counsellor if i cant shift this cloud. i need to stay positive. its very hard. i think its more than dad's ec though. i need to take better care of myself. at the moment my needs sit way down a very long list so i'm not really surprised that its so hard for me to cope.

anyway you've given me some constructive ideas. will have a better day tomorrow.

thanks for listening to me ramble when you all have yourselves to think about.

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

I have what I call worry stones in the backyard which is basically a path of stepping stones and I leap across those to burn nervous energy. But the stress is hard on us all and it help to share. I have lost a lot of hair due to stressing that even stresses me out! Oiy!

ShellyAS
Posts: 24
Joined: May 2012

My husband had a complete esophagectomy at the end of May this year. Only after the surgery was he staged. His tumor was a T1b. His was found during a routine scope for Barrett's. He was diagnosed at age 44. I just kept thinking we have 2 girls to raise. This was not suppose to happen.

It was really hard getting through the months before the surgery. I felt that people were being polite by asking about him and I had to keep repeating everything. I got to the point it was hard to keep talking about. It seemed so surreal. I also believed I had to keep a strong front for my kids. I tried not to let them know how hard it was on me. I wanted to be their rock. Afterward, they told me they knew how worried and stressed I was. It was like I had a building on my shoulders I felt so weighted down. My friends tried to understand but without going through it they could not totally understand. Even today knowing that the Dr.'s are saying they get it all I feel skeptical; like I am waiting for the shoe to drop. I know I should be extremely grateful, and I am, it is still just so fresh. I need the time now to heal from this experience.

My 11 year old daughter just shared with me last night that she pretended it was no big deal. She went to a camp with our church and she broke down crying. She said she started thinking about it and realized she tried to make it go away but then it came to her that she had to face it and accept it. This is our life now.

It's ok to feel the way you do. This is your pain. Things will change and it will be scary for the unknown but it has a way of working itself out. That old saying "one day at a time" is so hard to life by but so necessary.

My husband is doing remarkably well after the surgery. He loves to eat so that was his goal to get back on solid foods sooner than later. His jtube came out 2-3 months after surgery. He is a cabinet maker and went back to work last week.

Blessings,
Shelly

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

Claire, I am not the caregiver but the survivor. When cancer is diagnosed it effects the whole family. Every single one reacts differently.
My husband and daughter were my caregivers. My husband didn't show his feelings,but my daughter did a little. My oncologists had a psycologist that was available to all. I never felt the need for her, but my daughter did. It was after my surgery and she felt she was at wits end, so she called and received help in coping. Sometimes I think the loved ones suffer more emotionally than the survivor.
If you need help by counselling or an anti depressant ,don't be ashamed to admit it. What you and the family are going through right now is hard, and you need help in bringing the joy back. I am so glad your dad is operable, but knowing that,is not enough to put your mine at ease. I beleive I can speak for others as well as myself, when we are touched in any way by cancer ,it becomes a part of us. Even though It's been almost five years since diagnoses and I'm NED, it is still a part of me, but it's not who I am.
I thank God for the time he's given me,to educate others on the danger of acid reflux and allowing me the opportunity, through sites like this to be an encourager.
I know it's hard today, but tomorrow will be better. Reach out for the help you need now. Think of yourself, and it will make you a stonger, happier person.

Hugs and prayers, Sandra

Bermudagirl
Posts: 120
Joined: Jun 2012

I think that all the thoughts and feelings you are having now are appropriate. You've been dealt a crummy hand, to say the least, but what can any of us do but play the hand we're dealt, to use a cliche. But it's true.

You're dealing with your dad's EC, others have a spouse, sibling, or mom who was diagnosed with the disease. I think given the relationship with the patient, it can be a little different for all of us, but in many ways the sorrow, grief and sheer terror are the same.

My Dave is just 58, and we should be in the prime of our lives, and indeed had been until June of this year. We've been together 6 and a half years, having found each other after long, unhappy marriages. Life was good. A few bumps in the road, but who doesn't experience that? I just never thought that he would come down with a cancer that is so wily, so underfunded and not well understood by the medical community at large. We are so fortunate in that we are a stones throw from the esteemed Johns Hopkins in Baltimore, but so many people are not so lucky.

What I am having trouble with in coping is the worry. Worry that it will come back after surgery, worry that Dave really has no idea how rough the recovery might be, worry that our lives could forever change.

We just got back from a really nice getaway to the beach today. We spent 5 days at the ocean. I was pleasantly surprised as to how well Dave did. I found him getting stronger each day we were there. And he could eat! He had lobster tail one night, fried oysters another, pasta a third, and a chicken casserole another night. He was so happy to just be normal and eat. That's what makes me sad, we'll have another 3 good weeks, and then surgery on the 8th.

Without getting too personal, I've also found that our very ahem, active, sex life took a deep hit once treatment started. That was really hard for both of us. I'm happy to say we rekindled that flame, and plan to take advantage of that til surgery is upon us. Intimacy is so important in a relationship, and when stressed it can become even more important.

As far as seeing a therapist or taking meds, given that you are a busy wife and mother, not to mention daughter, I whole heartedly recommend that you talk to someone. I've been seeing a therapist off and on for the past several years (unrelated to EC) and find having someone trained to bounce things off really helps. I also take lorazapam (an anti-anxiety drug, just .5mg) to help take the edge off and help me sleep. I don't use it everyday, but just knowing that it's there has really helped me.

Sorry for the lengthy response, but know that what you are feeling and experiencing is normal and to reach out for help if you need it.

Hang in there!

Sandy

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

There's just no right or wrong way to act, behave, or feel. It's just a dreadful place to be when one is diagnosed. I was very very lucky because when my mom was diagnosed in Aug 2011, I became her primary caregiver and brought her to live with me. I have only one brother who was home dealing with his wife's brain cancer (breast cancer with mets to the brain), so we were all wrapped up in cancer.

I just don't remember what I felt, or even what I did. I know that I had no thoughts for anything other than mom, and keeping her meds straight and appointments logged. It was a terrible time.

I found lots of support and comfort on this site.

goty2001
Posts: 71
Joined: Jul 2012

see below

goty2001
Posts: 71
Joined: Jul 2012

I'm speaking as a stage 4 who dips in here once or twice a week. Great people here, great advice etc etc, but don't get into a rut of spending hours here or in any medium dealing with cancer every day - don't define yourself (or your dad) solely by the disease if at all possible. It's a thief that may rob years off the future ... don't let it take now too - there's a lot of life to be lived away from here now.

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

Well, I don't know about that. I was here daily to ask questions, and to cope with the day-to-day issues that crept up seemingly every day. I spent a lot of time here reading, and asking questions.

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