Esophageal Cancer Support Group
Esophageal cancer is malignancy of the esophagus. There are various subtypes. Esophageal tumors usually lead to dysphagia (difficulty swallowing), pain and other symptoms, and is diagnosed with biopsy. Small and localized tumors are treated with surgery, and advanced tumors are treated with chemotherapy, radiotherapy or combinations.
I feel as if my husband is not taking enough personal responsibility in this chemo warfare we're waging.
Having been thru this with my mother, I spent weeks before he started chemo organizing records, getting forms on computer, etc. I asked him to go over the monthly bills with me - just because I've never done them myself - but he never made the time to do so.
He was told to hydrate, hydrate, hydrate before, during, & after chemo. He drank maybe half of what he should have & ended up in the hospital for 10 days, his kidneys almost shutting down. He also had severe mouth lesions - very painful!
He was understandably weak when he came home on Tues, but as the week went on, he made no attempts to begin exercising (like just walking down to the mailbox & back) until we saw the doctor on Fri, who told him to get more active.
His mouth sores have mostly healed now, but he's not making any effort to help with household tasks - something he's always been great about in the past. I don't expect the same level of help, but he's capable of putting dishes in the DW. He's also not asked about, or looked at, or paid any incoming bills. (I'm slowly switching everything to computer pay so I can take on this task if I must.)
From the posts I read, it sounds like most of you folks who have experienced setbacks are proactive about your recovery & continued good health. That is how I am about my Parkinson's. That's how I approached recovering from my shattered knee 2 yrs ago.
I don't mind being tired when I know he's giving it his all, too, but I don't think he is, & I'm getting really run down. His condition doesn't warrant getting in-home help; it just warrants initiative. There's a line between compassion & enabling, & I'm beginning to wonder if all my energy is starting to enable his helplessness. Am I expecting too much?
Having been thru this with my mother, I spent weeks before he started chemo organizing records, getting forms on computer, etc. I asked him to go over the monthly bills with me - just because I've never done them myself - but he never made the time to do so.
He was told to hydrate, hydrate, hydrate before, during, & after chemo. He drank maybe half of what he should have & ended up in the hospital for 10 days, his kidneys almost shutting down. He also had severe mouth lesions - very painful!
He was understandably weak when he came home on Tues, but as the week went on, he made no attempts to begin exercising (like just walking down to the mailbox & back) until we saw the doctor on Fri, who told him to get more active.
His mouth sores have mostly healed now, but he's not making any effort to help with household tasks - something he's always been great about in the past. I don't expect the same level of help, but he's capable of putting dishes in the DW. He's also not asked about, or looked at, or paid any incoming bills. (I'm slowly switching everything to computer pay so I can take on this task if I must.)
From the posts I read, it sounds like most of you folks who have experienced setbacks are proactive about your recovery & continued good health. That is how I am about my Parkinson's. That's how I approached recovering from my shattered knee 2 yrs ago.
I don't mind being tired when I know he's giving it his all, too, but I don't think he is, & I'm getting really run down. His condition doesn't warrant getting in-home help; it just warrants initiative. There's a line between compassion & enabling, & I'm beginning to wonder if all my energy is starting to enable his helplessness. Am I expecting too much?
Dehydration is very debiitating, so anytime he needs to, he should be able to go get fluids from his oncologist office? I had to have them a couple times.
We were able to have home care, as I was my husband's caretaker, so we did Meals on Wheels, Homecare cleaned our house. My son did all our chores, running the sweeper, and shopping. My sisters took me to my appointments when I could no longer do them. My brother-in-laws helped stay with my husband, so he wouldn't be alone and they all offered all they could and even more. Sometimes it takes a village, I say.
For me, honestly, I went from lift chair to recliner and the bathroom. I'd say if there's any way you can get some help from family, church, friends, homecare....I'd try that. Ask your husband about it.
Just my opinion. Everyone is different, I know, but I sure wouldn't have wanted to have to be active or cleaning the house when I truly felt I was dying. It took all I had to just make it through it.
My best to you and your husband, I know life is tough with EC and I'm sure with Parkinsons. My husband had had a stroke 9 months before me being diagnosed with EC and he wasn't able to stand up or walk alone again after his stroke. So, both dealing with serious health issues at the same time...yeah, it's tough. Hang in there! Keeping you in my prayers. Brenda
But here is my question ... who contacted & set up your Meals on Wheels participation? When your periods of pain & debilitation began to subside, did you slowly try resuming rehabilitive activities, like walking? Socializing? Staying advised of financial matters?
Ted was very, very sick which - yes - tired me out, but didn't cause frustration. I would never have expected him then - or now - to be helping with household cleaning. Nor do I expect him to start training for the NYC marathon.
But when he doesn't follow the doctor's orders regarding his own role in this program - staying hydrated & using his well time to get in some exercise, for example, I do get frustrated. I arranged for a home services nurse to visit us to evaluate our needs, & await her conclusions.
The house is stocked with Ensures, vitamin waters, Breeze, juices. I make fresh fruit shakes with Instant Breakfast, yogurt, and/ or ice cream. But he still needs plain water, which only he can choose to drink or not. Too often it's "not."
When I was diagnosed with PD I converted a bedroom into a workout room - exercise bike, ballet barre, weight bench, free weights, yoga mat, small TV for work-out tapes, a mirrored wall ... One doesn't need much for walking except sneakers & good weather, which we've had. We're also near enough to the beach to walk the boards.
It's all there for him, but I can't make him drink the plain, essential water that's vital to successful chemo, or exercise when he's able. I can't make him return calls to a local EC group that's reached out to him. I'm beginning to wonder if he's in a state of clinical denial.
But enough of this. There's a fine day ahead of me, the sun is shining, & our 7 year-old grandson is coming over for a few hours. I'm sorry for usurping so much space on this topic.
Bari
Your husband may be suffering from depression.
My wife is my caregiver, both for Parkinson's (dx'd 2002) and EC (dx'd Aug 2004). She suffers from and is being treated for depression.
Your description sounds a lot like my wife before treatment.
If you have a PD Neuro, you might have him/her evaluate your husband.
My wife has been much more like her normal self since treatment started. We're both glad she is getting her treatments.
We'll pray for you both.
All the best,
Fred
You both have major, life-changing diseases. Take care of yourselves.
All the best,
Fred
It's been a long week ... Ted coming home from the hospital on Tues, me spending seemingly endless hours in the kitchen making the special foods he needed, cleaning up, then going thru the cycle twice more plus snacks, plus other household chores before bedtime. I was just worn out.
We went to a Christmas cocktail party at a good friend's house tonight which was fun & uplifting. It's 9 pm now & lights out for me. Thanks for your insight, Fred.
Once I was past my weight lifting restrictions from surgery - all my energy went to getting my husband to therapy 3 times a week. I always felt he would walk again. He could move both legs, but in the end I guess it was the balance that was off, so he never was able to do that, but he died with us both thinking that he would! He died from something they called Sepsis? He was fine that morning eating his oatmeal breakfast. Hadn't been sick. We left the house for his therapy and couldn't make it off our front step. He died 7 hours later in the ER.
Getting him to his therapy was about all the energy I had, once my weight restriction time passed. He was my priority. Honestly, I watched myself so closely, mostly so I could be here for him. As time passed I was able to do more and more around the house, so we let the agency go. I still to this day (3 years post-surgery) don't have the energy I had before EC. And, that's ok with me. I'm just so grateful to be alive. I don't have to live with the expectations of society that I thought I did before EC. Cancer truly was life changing for me in many ways.
My husband never wrote after his stroke - other than his name when they insisted on medical forms. He wasn't able to use his right hand and wasn't interested in using his left for that. He was determined to get his right arm back, so his focus was on that. So, I handled all our expenses. Most of mine were automatically deducted. I always paid our bills that couldn't be automatically deducted and always was happy to let the auto deductions handle the rest.. So, I only had to write a couple checks a month. I was just thrilled that he still made me laugh everyday. He was the funniest person I ever knew and had the most positive view on everyone and everything in life. I miss him terribly, but feel his presence around me :-) Yeah, I was so blessed to have him in my life almost 36 years.
All our paths are different, yet similar. Relationships, too, different but similar. I hope you can find love & laughter in spite of the restrictions of health issues. Life can be so short & there are so many simple things in life to enjoy. I hope you can find that inner peace for both of you during such difficult times and always. Brenda
Dream, I've been thinking about your post for the last 24 hours. I just got my hubby home from TIE surgery for EC too. My problem is the opposite of yours - I can't slow the boy down. He's so determined to be well, that he's pushing all the limits, boundaries, eating restrictions, walking the dog, lifting too much, VACUUMING..it goes on. It's terrifying. But it's how he deals I guess. It turns out we do have to talk to the chemo people this week, and after 25 years with this man, I know he does go into overdrive when he's worrying about something. We didn't think we were going to have to do chemo - and we still don't know for sure. But it's how Mike deals - he hates being idle, he HATES not being able to eat, and he hates someone telling him he can't do something. Sigh. My little 143 pound rebel. (used to be 165 but, for now, he's not losing any more. not gaining either, but...not losing).
I think everyone copes differently after a major surgery like this. I also think that a life threatening disease like EC (even after treatment/surgery) changes your life forever, even on a cellular chemical level so that most certainly could spawn depression. I hope you do tell your hubby's doc what's happening so you can either treat or rule out something sinister going on for your man. My prayers are with you.
Margi
Years ago, I needed hernia surgery but managed to get severly dehydrated before they could do it. I was back at work in 3 weeks but it was 6 - 8 weeks before I could really function. And I started out "healthy".
Crystal Light is now marketing their stuff in boxes of individual packets you add to a bottle of water. Target has a great price on them if you have a target with groceries...My husband much prefers his water this way.
My husband is much, much better, but still not back to his pre-chemo condition. He's getting there, but still tires so easily.
Blood tests revealed the need for further hydration, so he was hooked up to an IV for 3 hrs today. Doctor not sure if there was an unknown, pre-existing kidney problem prior to chemo, if he's just not drinking enough, or what the problem is. What the doctor IS certain of is that he won't resume chemo until all vitals are back to normal. Ted's extreme reaction gave even the doctors a scare.
Margaret, yes - we have a Target nearby & I will try the Crystal Light. I've also decided to buy a case of individual serve bottled water. Not very "green", but it will give us an accurate measurement of just how much Ted's drinking each day.
Margie, I can't say he's gotten out the vacuum yet (nor does he have to), but I did withdraw some of my hovering, and he easily picked up the slack. Just running an errand or so a day has helped him regain some strength, but I don't see him being ready for a daily exercise routine yet.
I'm keeping an eye out for depression, but I don't think that's an issue right now.
Thank you all for your help. I was really run down & stressed when I posted my question.
Bari