No one tells you what happens AFTER treatment

dogsavr

My husband has just finished treatment. Surgery, 3 rounds of chemo and 39 radition treatments. The docs say he is cured--yay! I knew he wouldn't be "back to normal" a few days after treatment. But I did not know that he would seem like a stranger to me in so many ways. He is angry, short tempered, depressed, fatigued, grouchy and overall just extremely unpleasant to be around most of the time. 

 

I have been researching support groups and I can't find a group that seems to be a fit for me. We are not "old" (late 40's) and he is not dying. Most of the groups seem to center around how to deal with a terminal patient and so forth. I feel like screaming often and I am beginning to fear our lives are never going to be even close to how they were before. I have no idea what to do for him or say to him and find myself avoiding being around him. 

 

I think I am suppoes to feel relieved, grateful, joyous, etc. And instead and I am just angry and scared and feel like I am living in a nightmare. Does / has anyone out there feel / felt like this? Am I losing what is left of my mind? Why don't doctors tell you that they can save your husband but the man you get back is not the man that you started with. In so many ways.

paul61

Things will improve with time

Unfortunately the experience of not being adequately prepared for what comes after treatment is a common experience.

I had my esophageal cancer treatment and surgery approximately seven years ago. I knew that recovery from such a major surgery would take an extended period of time; but I was in no way prepared for how difficult the recovery would be in my weakened condition post-surgery. I had the traditional “open” Ivor Lewis surgery; hopefully your husband had the more current minimally invasive laparoscopic approach. But, irrespective of what surgical approach was used, the major changes and physical trauma to the inside of your husband’s body is the same. Most esophagectomy patients take approximately a year to fully recover from treatment and to assimilate the life style changes that must be made after treatment.

The medical folks you come in contact with during treatment don’t spend a lot of time talking about the physiological effects of cancer diagnosis and treatment. Your husband is working his way through a whole new and frightening personal reality.

When I was diagnosed with esophageal cancer I was a “healthy” and very active 61 year old. I had never been seriously ill before and had never been in the hospital for longer than an ER visit. After surgery I found myself weak, 30 lbs. lighter than before treatment, and unable to eat without experiencing something like nausea, abdominal pain, or sudden diarrhea. Nobody told me that these things were “normal” and would improve with time. I did not receive nutritional counselling from a dietician with expertise in the way my new digestive system would and would not process foods.

So finding myself in this position made me angry about how my life had changed, frightened about my new experience of mortality, and embarrassed about all my new challenges and problems. Two weeks after surgery I remember thinking “If this is what the rest of my life is going to be like, I would have rather died in surgery!” And to make matters worse, my wife kept asking me how I was feeling, reminding me it was time to eat again, and kept saying “you have to eat to keep your strength up”. I know she was just trying to help me but in my frightened and frustrated state I just wanted to be left alone. I did not realize that it is normal for a person to go through depression after a major physical trauma.

But as time went on my body adjusted to my new digestive system. I learned what foods I could eat and what foods to avoid. I learned how to live with the uncertainty of being a “cancer survivor”. I also learned to live life “one day at a time” and to be thankful for the good days and survive the difficult days. I started to gain weight and strength and once I started to be able to do the things I enjoyed again I mental outlook improved.

One of the things that helped me the most was to be in contact with other esophageal cancer survivors like Loretta’s William, who could assure me that some of the physical and mental challenges I was experiencing were “typical” and would improve with time. It was great to hear, “Yeah, I had dumping too, I found if I ate protein first, carbohydrates second, chewed everything twice as much as I used to, and avoid sugar, things got much better”. “And if it happens, don’t worry about it just move on, it will get better”.

So as Loretta suggested, there are survivors and care givers here who have been through what you are both going through. We are always willing to help in any way we can.

One other thing I should mention is that if your husband is taking new medications after his treatment, sometimes those can have unexpected effects. Reglan, one of the drugs often prescribed for gastroparesis (food moving slowing through the stomaphagus), is infamous here for causing depression. So medications should be examined as well, but post-surgical depression and frustration are “typical”

Have patience, things will improve. Things will not return to how they were prior to diagnosis, but you will find a “new normal” and you will find you are back to doing the things you enjoy with the people you love.

Best Regards,

Paul Adams

McCormick, South Carolina

 

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Seven Year Survivor

 

 

LorettaMarshall

Dogsavr~Hopefully Relief-Gratefulness & Joy will soon B yours!

Hello “Angry—Scared—Feel like living in a nightmare!”

My dear lady and “friend” although we’ve never met.  You are talking with a “wife” of an Esophageal Cancer patient, who also went through the same “tri-modal” treatments you describe.  I can understand your feelings completely.  First of all, NO ONE should have told you your husband would be “back to normal” in a few days.   How much research did you do on your own after your husband was diagnosed?  Some doctors will not tell you anymore than you ask, and when a person doesn’t go searching on their own, and find answers from reputable sources, they are certainly going to be dismayed.  So I’m sorry that you were not told more, and didn’t know more before your husband’s diagnosis.  However, I can assure you that if you will get in touch with me, I can certainly walk you through the things your husband MUST still adjust to before returning to normal.  And when you realize what’s going on post-operatively, things will change.

I remember one gentleman, who was very depressed after the surgery because he was losing weight, and didn’t know what to expect.  His daughter knew we were posting on the web.  She read some of our posts and said, “Can you visit my father?”  He happened to live only about 50 miles away.  We readily agreed—we visited him, and we became great friends, and he was soon relieved of his depression.  It was a matter of not knowing what to expect.  Now he had the same type of surgery at UPMC, and the surgery went just great.  It was the “adjustment” after the surgery that he was upset about.  And if you haven’t been through it, and are just getting started with that “after-surgery-now-what” period, believe me you will wonder WHAT ON EARTH DO WE DO NOW?

If you don’t mind sharing with me who told you that, and what kind of an Esophagectomy your husband had, I would just love to know. What was his diagnosis?

Now you don’t have to go into detail as to the emotions the two of you MUST HAVE SHARED when you first learned your husband had cancer, and at such a young age.  (Yes late 40’s is still young!)  My husband was 65 at time of diagnosis.  Today he is 80 and I am 78. 

After the initial shock of hearing the words “Your husband had cancer, and my asking how you spell Esophageal?” my mind went into a spin.  My first thought—“Is my husband going to die?”  Then I began my own search of what in the world is Esophageal cancer--who has had it—what happens during the surgery—what happens after—how long will he live—is there a way to fix this—who can we talk to that has had this surgery that can tell us their story, etc. ?”  And yes, lots of anxiety and uncertainty accompanied each doctor visit and each treatment.  And to be honest, all the time we were going through it, it actually was a walk in the dark because we didn’t know what to expect long term.  Actually only God does, but if you have someone to walk you through it, or walk through it with you, you will be much better off.     

Granted late 40’s is a young age, and a time when you would never imagine hearing that you have cancer.  However, we had one girl here who went by the name of “Kitten”.  She was only 23, and did pass away from EC.  She was Stage IV.  Actually, her doctors rushed her to the hospital in so many words, and performed an Esophagectomy on her, without doing all the preliminary tests.  More cancer was found during the surgery than they anticipated.  And that is so often the case.  Sometimes even when the neo-adjuvant chemo is given, and the scans show a complete eradication of the tumors involved, that during the surgery, more cancer is found!  Kitten didn’t have any pre-op chemo/radiation.  She was just rushed into surgery!  That’s a “no-no” if there ever was one.  Complete testing first.  Only if it is in the “in situ” stage will chemo and/or radiation not be prescribed prior to surgery. 

Now I’m concerned about your own sanity and that of your husband’s.  If you WERE NOT TOLD about the recuperation period that it takes for EC patients to adjust to a “NEW NORMAL”, you are truly between a rock and a hard place.  And shame on those who did not give you more instructions on what comes after the surgery.  You are rightfully perplexed, dismayed and a bit unhappy! 

Now sometimes, even more chemo has to come “after the surgery” (adjuvant=after) if more cancer is found in lymph nodes that are removed and examined by a pathologist.  Did your husband have the chemo/radiation treatments (neo-adjuvant=before) his Esophagectomy?

Moreover, did he have the Ivor Lewis (Open) surgery, the Transhiatal, or the Minimally Invasive Esophagectomy?  Now no matter the type of surgery, there is an adjustment period that cannot be avoided.  While the adjustment period is the same for all patients in eating and sleeping patterns, etc. there is more potential for problems with a surgery that involves large massive incisions rather than one-inch incisions just large enough to place instruments inside as it is with a totally laparoscopic procedure.  So I can imagine if your husband has big incisions that this is another reason for dismay.  Some have slept in a recliner for months before they could once more sleep in their own beds.

Incidentally, exactly when did your husband’s troubles start—where did you go for treatment—did you have a second opinion—does he still have a feeding tube?  Usually patients are discharged with a “J” tube because patients normally lose a tremendous amount of weight after surgery.  My husband lost 60# during the first year, then it leveled off.  He was overweight, and needed to lose that fat anyhow, but it was because there is so little room for food to be eaten at one sitting because the stomach has now been elongated and serves as a “new Esophagus.”  Gastric conduit is the technical word.  There is so much in the recovery period that is connected with the new way of eating.  There may still be difficulty swallowing and a dilitation (stretching) may be required.  My husband began to cough and clear his throat a couple of weeks out from surgery.  His thoracic surgeon explained that scar tissue will sometimes form around the "anastomosis" (Place where the 2 organs are rejoined) and that food or saliva may stick on that tiny edge of the scar tissue instead of going straight down after swallowing.  So that may be something to watch out for.  My husband had 2 dilitations in the first 6 months, and no more have been required since then.

And certainly you were told that you husband should not lie flat, and should be sleeping in an elevated position!  But if you care to talk further, you can share with us what you are doing trying to ADJUST.

What kind of follow-up did your husband’s doctors outline for you?  They should have told you all this.  Moreover, there should be quite a few checkups close together at the beginning, and then as time progresses, checkup periods will be further apart.  My husband still goes twice a year for scans and bloodwork.  He is in a support group here locally, and serves as an inspiration to others there that are just like you “were and still are—not knowing what to expect," but hoping for the best. 

 My husband’s diagnosis was “Adenocarcinoma at the GastroEsophageal junction (GE), Stage T3N1M0”.  He had the totally laparoscopic surgery performed by Dr. James D. Luketich at the University of Pittsburgh Medical Center on May 17, 2003.  (Ivor Lewis Minimally Invasive Esophagectomy aka as MIE). 

So tomorrow we will celebrate 14 years after EC and begin our 15th year!     In reality, we celebrate life every day, because both of us could have died already!  He is still cancer free as of today, and that is a God-given miracle.  Those who have a more “invasive” type of surgery will take longer to heal, and the recovery period will take longer.  However, regardless of the type of surgery, all EC patients will experience the same kind of recuperative period. 

Now today you don’t know what to believe or expect, that it obvious—but I’m going to send you my phone number and e-mail address, and I hope you will call me personally.  Nope—there will be no charge for “psychiatric services”—you’re not going to lose your mind, although you may feel like it presently.  I  believe it’s truly a matter of not having anyone to tell you what to expect and time periods involved.  So if you will, please write to me privately, or here on line, there are other “survivors” here.  We’ve all had different experiences, but we are all survivors. 

And just so you know, I am William’s wife.  I was diagnosed with terminal Ovarian Cancer back in November of 2012.  I should have already died from time of diagnosis.  So I know what it’s like to be a caregiver to an Esophageal Cancer patient, and I also know what it’s like to be a terminal cancer patient myself.  And while I’m still here, my desire is to “walk with others through their sorrows and difficulties” if, and when I can.  Now I will say that my husband’s personality did NOT change.  We were drawn closer together than ever before, and now even more closely, if that’s possible, since my own diagnosis.  We both can practically read each other’s minds because we have shared so many emotions one with the other. 

I see no reason why you cannot ultimately enjoy the closeness and love for one another that attracted you to each other to begin with.  I don’t even know if in this present “politically-correct” era, whether or not marriage vows are even taken seriously.  By the divorce rate, or even worse living together without the benefit of matrimony, it would appear that the words…”In sickness or in health…till death do us part"…do not mean much.  We celebrated our 55th wedding anniversary in January 2017.  And we've had our share of difficulties and hard knocks in life, but none were marital, thank the Lord. 

My desire for you and your husband is that the two of you will be able to come together and love each other more than ever before.  This is truly a test that can tear couples apart, or bring them closer together.  But it’s got to be a “2 for 1” proposition.  You and him—TOGETHER.  I believe that once you “get through” this awful ordeal, that you will be stronger, smarter, and more committed to each other than ever before.  You certainly don’t have to tell me—I can tell you—it’s rough.  Even without a cancer diagnosis, life isn't a bed of roses!  One of my friends termed the EC journey as the “highway to HELL!”  You will probably agree with that!  But there can be a full recovery, and a return to work, and the ability to do all the things you were accustomed to doing—but it takes time.  The “new normal” will be the different eating and sleeping pattern after all is said and done.  I believe that all the anger will change to an attitude of thankfulness and happiness that your husband is a survivor.  After all, survival stats are not that good you know!

I always said, “When my husband has cancer, I have cancer.”  No doubt you feel the same way.  Truly I wish for your husband a good recovery and for both of you a renewed commitment to each other.  I understand why you feel this way!  Things will be better.  You've got to believe that! 

Love Loretta

P.S.  If you click on our picture, you will know a bit more about us.  But for starters, I will give you a few links telling you what to expect afterwards.  They are things you now need to know!  Eating and sleeping habits will be a new adjustment.  Farther along, your husband should be able to eat the same foods he has always enjoyed, just not as much at one time as before the surgery.  Sleeping elevated will be the new normal from now on.  His energy level should return unless he has other medical problems.

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1.  http://www.upmc.com/patients-visitors/education/nutrition/pages/esophagectomy.aspx

“UPMC Content 2

Diet After an Esophagectomy

An esophagectomy (ee-soff-uh-JEK-tuh-mee) is surgery to remove the esophagus. After this type of surgery, it is common to have some problems eating for a few months.

What can I expect after surgery?

For the first few months after surgery, you may have problems such as:

• Weight loss

• Dumping syndrome (nausea, diarrhea, abdominal cramping, light-headedness)

• Excess gas

• Trouble swallowing

Your diet plan after surgery is designed to lessen your discomfort and allow you to enjoy eating…”

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2.  http://www.upmc.com/patients-visitors/education/nutrition/pages/dumping-syndrome-diet.aspx

“Dumping Syndrome Diet

Dumping syndrome sometimes happens after stomach surgery.

Dumping syndrome is caused by large amounts of food passing quickly into the small intestine. This causes symptoms like abdominal pain, cramping, nausea, diarrhea, dizziness, weakness, rapid heart beat, and fatigue. This diet will help stop the symptoms of dumping syndrome.

Tips to Help Relieve Symptoms…”

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3.  http://www.oncolink.org/support/nutrition-and-cancer/during-and-after-treatment/post-esophagectomy-diet

“Post-Esophagectomy Diet

Esophagectomy is a surgery to remove all or part of the esophagus, which is the tube food moves through on its way from the mouth to the stomach. When the esophagus is removed, the stomach is pulled up into the chest and reattached to keep the food passageway intact. This stretching of the stomach takes away the ability to eat large meals, as there is no longer a large "holding area" for food to be digested. Nutrition is an important part of healing and preventing weight loss after surgery. Patients can experience nausea, vomiting, acid reflux, and dumping syndrome. This article will review some ways to decrease these symptoms. Check with your healthcare team for specific recommendations for your case.

After the surgery, the remaining esophagus may not be able to move foods as easily from your mouth to your stomach. Certain foods can block the esophagus or be difficult to swallow. Some people complain of food "sticking", or have midsternal (behind the breast bone) pain. This may be prevented or resolved by sipping fluids when eating solid foods, chewing foods well, eating soft or chopped foods and avoiding tough, gummy, or stringy foods.

You may also get gastroesophageal reflux symptoms, such as heartburn and reflux of stomach contents, causing intolerance to certain foods, especially acidic, fatty, and very hot or very cold foods. Gas and bloating sometimes occur after surgery. Therefore, you may wish to avoid foods that are known to cause gas.

Each person is different and will tolerate different foods. Only you can decide which foods 'agree' with you and which don't. Below are ideas that may help you to manage your symptoms. The most important guide is how you feel after eating a food…”

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4.  http://www.uwhealth.org/healthfacts/surgery/4281.pdf

“…The purpose of this booklet is to help you prepare and learn about your esophageal surgery. This contains information you need to know BEFORE, DURING AND AFTER your hospital stay…”

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5.  http://fightec.org/blog/esophagectomy-recovery-eating-sleeping/

(One man’s personal story of life after his Esophagectomy.)    

“…The first two months of esophagectomy recovery were definitely a challenging experience. But relearning such basic functions as eating, sleeping and exercising proved to be the essential elements of my post-surgical recovery.

Bart Frazzitta is an esophageal cancer survivor and the founder of the Esophageal Cancer Education Foundation (ECEF). Read more of his story here >

• Esophageal Cancer: A Brutal Diagnosis

• Esophageal Cancer Treatment: Chemo & Radiation

• Esophageal Cancer: Overwhelming Emotions

• Surviving Esophagectomy Surgery…”

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Bobbi6149

I know how you feel

I too have experienced the anger, threats, temper tantrums, and depression from my husband after his treatments.  I was so scared that I left the house 3 times to save my life.  I feel you pain.  I lived 10 weeks of hell.  He had to be institutionalized three times in 10 weeks.  But once he came home he would through away the medicine and became paranoid, and has been diagnoised with demenia.   He stays in the house all day with the curtains and window shades closed.  I am not living there currently because he has threatened to kill me.  He won't talk to me or take my phone calls. I feel your pain, I truely do.  I love him but this is not my husband anymore.  He has become a total stanger.

LorettaMarshall

Bobbi~Sometimes it's good just 2 say "I'm hurting & troubled!"

Dear Bobbi

Have just arrived home from a trip I shall not soon forget.  While we were away attending the funeral of a relative who died of Prostate cancer, my husband had a mini-stroke, and spent two days in the hospital.  It was frightening to see him actually “having” the stroke.  We called 911, thankfully the hotel and the hospital were only about 4 blocks apart.  Now we will be dealing with heart issues, but at least we still “have each other.”   I’ve driven 310 miles today because we needed to return home, and I was afraid to let him drive.  The doctors agreed that it wouldn’t be good for my husband to drive home today. Several of my relatives offered to drive us home, but that’s quite a trip.   Even with my husband’s stroke, God is good.  Had my husband’s stroke happened half an hour later, we would have been on I-77 speeding down the road, (65 to 70 MPH) and my husband William would have been driving.  And most likely neither of us would be alive.   

Now to your heartbreaking story Bobbi.  Through the years we’ve had several who openly shared their pain, hurt, disappointment and frustration honestly just like you and “Dogsavr.”  Since we haven’t talked before, I’m not certain if your husband was undergoing pre-op treatment or if he had already had surgery and then the depression set in.  In any event, it’s tragic that there isn’t someone who could be an encouragement at this time.  EC is an earth-shattering diagnosis and once we hear those words, our lives are forever changed.  It sounds like you’ve been through H_E_L_L! 

Saying I’m so sorry can’t take away your total frustration and feeling like you’ll never get your “former” husband back.  I simply don’t know how to help you except to say, if you just want a “sounding board” you can send me a private e-mail and I’m here to listen. But this site frowns upon us giving advice because we’re not professionals.  On the other hand, we can be a “kindred spirit” because of our connection with one another because of our association with cancer.  I will confess to offering my opinions even when they’re not asked for.

As for your husband coming home from the docs and throwing away his medicine, I have personally witnessed people with mental problems stop taking their “medicine” and they were “not the same person.”  All I can say is you’re smart not to stay in the house, and I’m so sorry it is happening to you.  I hope he has some close family members who can “reach” him, but with a dementia diagnosis now, that is a real problem.

I do know of two people on this site that wrote some similar sad stories.  One was from a daughter, Deb, the other was from a wife, Linda.  It won’t make you feel any better to know that they both “lost their family member to mental problems” before their loved ones ultimately died from the actual EC diagnosis.  It was during their treatments for Stage IV Esophageal Cancer.  Deb “lost her father” while he was being treated for Stage IV Esophageal Cancer that had metastasized to the brain.  The doctors suggested whole brain radiation.  And Linda “lost her husband” during his treatment for Stage IV Esophageal Cancer (whole brain radiation).  “Eddie” was one person at the doctor’s office, and when he came home, he went to his room and stayed there and was very hostile to his wife.  He “ordered” his food brought to his room, didn’t communicate with her, unless she had to take him to the doctors.  I’m not telling secrets, Linda must have written 30 letters to us here on the board over a period of time.  Talk about frustration and total separation—she still lived in the house until he died, but it was H_E_L_L.  She said if it hadn’t been for her ability to write and share her trials with us, she didn’t know what she could do.  I just want you to know that in a case like yours, it’s not anything that you are doing that makes your husband respond like he is doing.  It is the cancer that is robbing him of all his dignity, and “killing you emotionally”, I would think.   Now remember, I’m not a doctor nor a psychiatrist, just an observer of how different cancer patients respond when they’ve been diagnosed with Esophageal Cancer. 

As for DEB, she wrote a pitiful letter pleading with anyone considering having “whole brain radiation” to NOT do it.  Both of the lady’s hearts were broken.  The daughter Deb said they lost all interaction with her father after the radiation.  He was not the same person anymore.  That was the same for Linda, the wife of another patient named Ed.  I’ll put a couple of letters below my name and you’ll see that EC can result in an entire family being torn apart emotionally.    

It won’t make you feel any better, but this kind of thing happens and your letter serves to let so many of us know how blessed we are to have maintained a healthy relationship with our husbands.  Now that’s not to say there were no spats, hurt feelings, misunderstandings, etc. that’s a given and all can attest to that at some time in their cancer experience.   Actually in a husband and wife situation, both have frazzled nerves, and sometimes short tempers.  I hope the cancer patient knows that their mate is hurting too, but in a different way.  And as is most often the case, up to this time they have had a relatively healthy life.  This really throws a person for a loop when they are diagnosed with Esophageal Cancer, even for us who manage to keep our sanity. 

Bobbi, have doctor’s tested to see if your husband’s cancer has spread to his brain? 

Personally, it sounds like it will take your husband a long time to recover and I hope in due time, things will get better.  Then again they may not.  And that’s the sad reality.  And what on earth would I do if this had happened to me?  Truly, God only knows!  I remember Larry King asking Nancy Reagan once, what was the hardest part of caring for her husband Ronald Reagan after his Alzheimer’s diagnosis.   With tears in her eyes, she said, “Having no one to share your memories with!”  Bobbi, I believe that you’re certainly at that point.  

 I know “Dogsavr” was frustrated about what to do.  I know that no one warned her about what to do after “after” surgery.  No one gave me any “heads up” about what comes after surgery either but we were so happy to be able to be a surgical candidate that we went through the “after math” not really knowing what to expect from day to day.  Even though your surgeon and oncologist will answer your questions, when you're new, you really don't know what questions to ask! 

Although it felt like my husband and I were really “walking in the dark”, we were “walking side by side”, hand in hand, even while we didn’t know where we were going!  But in the end, looking back, it seems like a fairy tale compared to the troubles others have had.  We haven't suffered emotionally like you are doing now.  I believe you when you say you love him.  You yearn to be his wife and soul mate like you once were, but at this point, I agree that your life could be in real danger.  If I were you, I would be afraid to go back home too.  And this is just plain tragic.  I hope you have some friends who will be there for you, when you feel like you can’t even think straight.  All I can say is that I’ve prayed for you as I write this letter.  God can give a person the ability to cope even when the problem won’t go away.

Must go for now because I’m exhausted.

Love and prayers,

Loretta

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Here’s one of Linda’s letters.

1.  http://csn.cancer.org/node/200982

 “September 14, 2010 - 10:08pm

Ed has a full blown psychosis over the weekend, doctors believe due to the brain cancer spreading, in the hospital very very sick. We are losing our Ed and we are with heavy hearts tonight after visiting him. He cannot speak nor can he do much of anything else.

They are trying heavy duty psych meds trying to calm him down, a lot of thrashing around the bed, very upset, restlessness, etc. Diana and I are trying to prepare ourselves for the worst coming, it is not easy. As much as Ed has been a, let’s say, tough patient, he is our dad and husband and we loved him dearly. He has suffered enough, I hope and pray that he goes in his sleep. This entire year has been one hell of a nightmare for all three of us.
Will keep you updated and please pray for Ed.

thanks so much

Linda and Diana”

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2.  https://csn.cancer.org/node/199621

“Ready to jump out the window!!!!August 29, 2010 - 4:59pm

Well I am ready to jump out of the window, Hospice provided me with a volunteer yesterday for three hours so Diana and I went out to lunch and then to my sisters for a swim.

Ed was pissed off to say the least, he has not spoken to either one of us since we got home yesterday at 3PM.

I am not staying in the house like a prisoner 24/7 and actually my sister is coming and I am going out in a bit for some dinner with Diana.

Who does he think he is?

He has not eaten nor drank much over the weekend, I believe because this is his way of getting back at us.

Just wanted to vent, I am sure William, if you read this post, you will have some words for me. I am just so angry, sad, mad, don't know what to do with all these emotions.

Just need to get it off my shoulders.

Linda

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Here’s a letter from Deb.  She wrote several but this lets you know that “cancer” can bring separation in different ways.

3.  https://csn.cancer.org/comment/1084780#comment-1084780

“dad

I haven't been on the boards for some time now, but decided to check in. Your post reminded me very much of my own story.

My dad was dx last July 13th ECIVb with mets to his liver. I scrambled, researched,looked for every combination of chemo, better doctors, studies, ect. Looking back, it was more like a dog chasing it's tail, never ending and what do you do if you catch it? I'm sorry to say my efforts were almost all in vain. My dad, age 65, died exactly 5 months later on Dec 13, 2010 after trying chemo and getting a stent.

I'm not trying to discourage you or take away all hope. My point is to try and make every single moment count. Pray, Pray,and Pray some more for him and your family. Leave no words of love and admiration unspoken. Tell and record as many stories and family history as you can. Take pictures, video, write a letter to him and if he is up to it, have him to the same.

I have no advice on what chemo is best. I am just a girl who watched her dad/hero be taken by this beast. He suffered and we did watching him become a shell of who he once was. The scariest part of all was when brain mets made an ugly appearance robbing him of memories and dignity. It was all so fast and I wish I would have spent more time doing the above activities instead of fretting over chemo and treatments that only caused him more pain and misery. Some people have few side effects and get more time, but at stage IVb every treatment is palliative.

Hindsight is 20/20. I wish someone would have told me these things a year ago. I wouldn't have believed them at the time, but just maybe, I could have spent more time with my dad instead of trying to fix my dad.

Prayers being sent.

Deb”

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Bobbi6149

Thank you Loretta

I know I will probably loose my husband to the cancer.  They have not done the surgery, because they haven't been able to do the last PET scan to see if the cancer is still there.  They did a brain cat scan abd MRI about a month ago, but he refused to go back to the oncologist and surgent.  I have neen temped to call him to see if I can get through to him, but there is a restraining order on him and he panics when he hears my voice.  He has no family in the area and only one brother has tried to contact him, whihc was the night he was hearing voices in his head.  He then called me to contact the sheriff.  I did and when he was asked if he was going to hurt himself, he said no..when he was asked if he was going to hurt someone else he told them yes, "I'm going to kill my F......g wife."  They called me and took him into custody.  I reminded the sheriff that there was an Order of Detension and he took him to the Hospital and diagnoised with Bipolar disorder, Paranoia, and dementia.  They then took him to the third mental health facility, which I had no idea where.  It has been very frustrating not knowing what is going on and no one from the facility would call me to talk with me until the day he was released.  I was not home by then.  I didn't think I could last another day with the way his was acting and I was functioning on pure adrenalin.  Thank you for contacting me.  I have been feeling guilty since I left because he is ill.  but I can not help him at this stage.  I truely hope he will get better, but it is unlikely.

Thanks again

LorettaMarshall

Bobbi~U can't feel guilty 4 things U have not caused!

Dear Bobbi ~

These are my impressions when I read your letter this morning.  What would I do if this were me and if it were my husband acting this way?

Number One ~ I would not go back home if he has been released from a mental facility!  Believe it or not, I think I can relate fully as for trying to deal with a mentally unstable person.  I certainly won’t name the person at this point, but we know a person that has been diagnosed with Paranoid Schizophrenia at least 25 years ago.  And that is still the sad story.  This person hears voices and is convinced that she killed a baby when she was a younger girl.  She has been in and out of psychiatric centers.  She is definitely bi-polar.  At times, she can talk perfect sense and you would never know she had a “dark side.”  Family members have had her committed more than once, and more than once the psychiatric center has released her to be out on the streets without any kind of follow-up or supervision.  No need to name a dozen things that I’ve observed from knowing this person for the past 35 years. 

• I’m certain she hasn’t killed any babies.

•  And God certainly doesn’t want her to get a job dancing in the nude for His glory! 

• Neither is there a “blood man” who stalks her at convenience stores.  She always sees him wearing a mask and squeezing blood out of a bird which he has in his hand. 

• She hears voices on a regular basis, and she believes them.

• When she’s on medication, she is stable.  (Now those around her know she isn’t really stable, but I mean that the meds cut down on the number of voices she hears! 

• She also wants God to tell her when she is going to die, so she’s made trips down to a favorite beach spot and waited for signs from God.  If she is going to die that night, a blue car needs to go by—if not let it be a white car!

• When she is not on prescribed tranquilizers, she is unpredictable and really a danger to herself.  I’ve feared for her children when they were younger, but thank God they are all grown and gone away from home now.  Of course this leaves emotional scars on the children though.

So Bobbi, it may well be that the cancer has spread to your husband’s brain.  That is not unusual. I would call or write his oncologist and relay the same fears and concerns you’ve shared with us here.  That would be placed in your husband’s record.  As his wife you certainly should be privy to his medical information.  The doctor could tell you the results of the MRI and the CT of the brain. I’m certain he/she will agree with me that you’re doing all you can do. 

It’s not SAFE for you to return home.  If it were me, the only way I would go home is to get access to important papers and then only when you knew for certain that he was being detained in a medical facility and couldn’t get out.  Take a friend with you.  Have keys made to the house.  Your life is in danger because people with the mental distress you describe cannot be “dealt” with or trusted.

So bottom line Bobbi, there are more ways to kill a person than with a gun.  And relationships can be killed by cancer.  It can drive people apart, or bring them closer together.  You did not cause the cancer.  You cannot make your husband do the things he should do to get better.  And even then, chemo is a gamble at best.  It works for some, for others, it doesn’t work at all. 

Don’t you dare feel guilty, because guilt implies that you’re at fault, and something that you can change.  You are NOT to blame for the way he has responded to this diagnosis!  The letters from other poor women in my first response were so you could know that people deal differently with their diagnoses.  This is your husband’s response, and it certainly has caused you much grief.  Yes, I feel sorry for him too, but who can help him?  No one—if he chooses to isolate himself and drown in despair!  You cannot do for him, what he will not do for himself.  And it’s evident that he has passed beyond the point of reasoning.

And of course, At this point, he is incapable of thinking clearly, and that often happens when cancer infiltrates the brain.  And even if the cancer has not yet spread to the brain, there’s always the possibility that it will.  Moreover, if he isn’t cooperating with his oncologist and surgeon and refuses further treatments, I believe the “handwriting is on the wall.”  Chemotherapy and radiation are standard treatments for palliative treatment of this cancer when no surgery is possible.  And without aggressive treatment, the cancer will continue to spread.  That’s just the nature of this beast!  And no one else should be blaming you for “not standing by your man” as the old song goes.  Let them walk a mile in your shoes, and see how their tune changes!  Don’t let fear of what other people might say cause you to put yourself in danger.  If they’re concerned, perhaps they would like to knock on his door, and say, “I’m here to help in any way I can.”  Nope that’s not going to happen because he is obviously anti-social.  I feel sorry for his brother too, because I’m sure he is unhappy watching his brother’s demise. 

Might I ask, “Do you attend church?  If so, is there a Christian counsellor with whom you can talk?   You need to be able to have an outlet for your distress.  Of course, God is as near as your heart’s door.  That’s my personal belief, but you may not agree, so that will be up to you as well. God gives me great comfort and assures me of His personal concern in all the things that I encounter.  I’m not going to elaborate on my own cancer, or my husband’s now, but I know that I draw great comfort from depending on Him and His promises.  And if you’re so inclined, someone near you that you could speak with on a regular basis would be a source of stability and comfort in your life.  I personally like to talk to others who have “been there—done that” when it comes to grief and sorrow.  This lesson in life “along the road”  is one that you will never forget.  And once you get through this, and eventually you will, you will be a great comfort to others, of that I’m certain.  Here’s a poem that says in just a few words that it’s life’s struggles that make us stronger.  You’re in a struggle for sure.

 

“Along the Road

by Robert Browning Hamilton

 I walked a mile with Pleasure;
She chattered all the way,
But left me none the wiser
For all she had to say.

I walked a mile with Sorrow ;
And ne'er a word said she.
But oh, the things I learned from her
When Sorrow walked with me!”

 

 Your feelings are justified, and you are right about refraining from calling your husband.  It may send him into orbit, since you are seemingly the object of his wrath.  It’s much easier to blame someone else than to undergo “self examination” you know.  The hospital should never have discharged your husband.  I hope he is still under some kind of restraining order.  But that isn’t 100% foolproof—that just means he can’t come near you.  Well, at least it says on “paper” that he’s not to come on your property, although he could still show up at your door.  And I know that is of great concern, as well it should be.

So all I can say is at 78, I’ve seen a lot and consider myself a good judge of character.   That comes from attending the “school of hard knocks!”  Our bodies deteriorate over time, but we still continue to “major in wisdom, understanding and compassion.”  Since I’m usually writing to others younger than I, hopefully things that I have learned over the years will be helpful.  If I lived close by, I would try to “take you under my wing” and try to comfort you. 

  Bobbi, you have every right to be distraught.  And as for your husband’s cancer, I like you, fear that worse things are going to happen.  Cancer does not stand still.  There are no alternative magic potions or salves that will eradicate this beast.  Many people have taken the best of care of their bodies and still find themselves with a diagnosis of Esophageal Cancer. 

Bobbi, I fear I will have to agree with you, unless your husband does a 180°, things are only going to get worse.  And by no means are you the culprit in this calamitous situation.  It’s bad enough trying to contend with people with mental problems but when cancer enters the picture, only God knows where it all ends.  Usually it does not end well.  No doubt this tops the list of trials in your life.  Under these circumstances, you cannot be your husband’s caregiver and don’t you dare blame yourself for his actions.  The most I can do from here is to give you a shoulder to “cry on”  and I know you’ve shed real tears.  This is not at all how you wanted your marriage to end.  And everyone that knows you will understand that you cannot risk your life to make decisions for someone who listens to no one and answers only to voices in his own head. 

Love and prayers to you dear one,

Loretta

  

Bobbi6149

I know I have to accept what has happened

Hi Loretta,

I do not wish to go back to the house as long as he is there.  I received a phone call from my neighbors saying he was having a couple of friends from work over for a baraque, however, I know they were there to tell him the lawyers are having the house appraised for sale or for him to buy me out.  We built the house exactly two years ago and moved in on June 16, 2015.  It was our dream house. But all good things must come to an end.  But he started to distroy the house after I left.  He cut up the curtains, broke hand painted plates and some wedgewood which I had collected over the years.  But they are only things.  I pray every night that God will help him through this and give him the strength to work through the confusion.  I know God is all loving and will help anyway he can.  I am going to a doctor on Wed. and will ask to see a counselor.  I sit and cry but I know I couldn't do anything else to help him.  Only God and professionals can do that now.  No one else has been to see him.  He has no friends.  It has always been easy for me to make new friends.  I have calls from the neighbors from there and I have calls from my friends at my new place.  I thank you for your kind words and carring about a total stranger.  I will be okay.  Now it is time for his POA and attorney to make him understand what has to be done.  I wanted to call him, but I know he can't understand anything I could say to him.  

 

Thanks again,

bobbi6149

LorettaMarshall

Bobbi~Praying 4U & your sick mate&wishing things were different!

Dear Bobbi,

Thanks for getting back in touch with me.  I feel sorry for your husband.  He is such a sick man that has sadly lost his way.  And without continuing his treatments the cancer will have a free run.  That’s doubly sad. 

As for the house, if he doesn’t do physical damage to it, and only destroys things that belong to you, at least the house will bring a higher appraisal.  You can’t replace those lovely antiques though, but like you say, they fall in the category of “things”.  Now “breaking your heart” is quite another matter.  But I fear you are right and mending this broken relationship seems highly unlikely. 

 Interestingly, seems he only tore up “things” that belonged to you.  That’s his way of “getting back at you, because you are the only one he can blame.”  So he breaks things that way he thinks he is injuring you.  I'm glad you're safe.  So you’re right—you can never go back.  That is… unless you have a policeman go with you and guard you while you remove your belongings.  I had a friend once that was involved in a divorce.  She had to have a police escort go with her to remove her belongings.  Pity the poor police that have to be involved in marital disputes.  However, I can think that would be the only way that you could return to get anything else of yours that you consider valuable.

Like I said Bobbi, I’m 78.  That means I’ve witnessed several marital incidents.  One was with my son who was renting a house that we owned.  Their marriage broke up. Now you’ve probably heard the old sayings about “HAPPINESS IS”…Well I found one that I can certainly relate to.  It could have been written by this woman.  Younger people may not remember when half-gallons of milk came in a waxy paper carton much like some orange juices still come in today.  And on the side of the milk cartons were pictures of “missing persons!”  So, the saying goes like this…”HAPPINESS IS SEEING YOUR MOTHER-IN-LAW’S PICTURE ON A MILK CARTON.”  Well I was anything but loved by this woman.  So as she was finally moving out, she painted my white living room wall “dark blue” in swaths with a 4-inch paint brush—broke into pieces an antique train set which we had previously given our son.  She also pulled up part of the living room carpet and left it piled in a heap, damaged the almost new living room sofa, plus she took the dog house and stole my window air conditioner.  This was MY house.    But Bobbi—you’re right.  It’s just things.  Yes, I was angry at the time—but now I’m over it! Nevertheless, I really haven't "forgotten" it. 

When I was first diagnosed with terminal cancer, I thought to myself, “what am I gonna’ do with all this “stuff”?   I’m still asking myself that question.  But Luke 12:15 says a man’s life consisteth not in the abundance of things which he possesses.  And really that’s true, because I’m sure we both know people for whom money is no problem and they can buy anything they want, including taking luxurious trips to far-away places.  (And I don’t envy them if they earned it honestly.  That’s the American dream.)  But I know that deep inside they are “empty” and the things that they possess have not made them happy.  And when two people truly love each other and are mutually considerate of each other that is what brings true happiness and meaning to a marriage.  That’s the “thing” you’re going to miss. 

So I’m sorry for your husband because he is sick physically and mentally.  I do wish he could have handled this crisis in a positive manner.  Anyone who has been diagnosed with cancer enters into a “different world” so to speak.  I can relate to some of the anguish and frustration that he feels, but with God’s abiding presence and help, I am “weathering the storm.”  So when I meet people on the street, or in a casual setting, and they greet me with the customary, “Hi – how are you?”  I used to just say “Fine” no matter how I really was feeling.  But most often now I say, “Well actually for a Stage IV Ovarian Cancer patient, I’m doing just fine!”  You would be surprised at how many interesting conversations my husband and I have had.  We usually wind up telling them about “our” separate cancer diagnoses.  And once in a while we meet people who actually know someone who was diagnosed with Esophageal Cancer.  The last conversation was with a heart specialist that came in to examine my husband in an out-of-town hospital just last week.  We had attended the funeral of a family member last Sunday in Pilot Mtn., NC.  But just as we were preparing to get on the road to come home on Thursday, my husband suffered a mini-stroke and was hospitalized for 2 days.  Now I’ve been mentally prepared to learn that my husband’s Esophageal cancer has recurred, although it hasn’t, thank God.  But I wasn’t prepared to see my husband actually having a mini-stroke. So now we have to set up an appointment with a cardiologist.  My husband has Atrial Fibrillation.  We knew that he had this problem from birth, but had done nothing in a preventative way except for taking two mini-aspirins daily.  It had never been a problem before.  The doctors said that most likely this is a pre-cursor to a bigger stroke because the likelihood of another one is greater as people with AFIB age.  Now with EC I’ve learned to recognize some symptoms but with AFIB, I’m not going to get a warning.  But as I always say, “our times are in God’s hands.”  And it is what it is.  And I always pray God will give me the strength that He has promised so that I can cope with whatever comes my way.  That doesn’t mean all things will turn out well though. 

But I’ve said all that to say this.  When we were sharing my husband William’s health history, we told the Cardiac specialist that “Billy” was now entering his 15^th year of survival with no recurrence.  And Bobbi, that’s what I always wish for everyone that comes on this site.  I’m passionate about letting them know where to go and what to do to start down the right path.  I wish I could have shared that info with your husband.  But interestingly the doctor said his own grandfather had died of Esophageal Cancer.  This doctor listened intently to our story.  He wrote down Dr. James D. Luketich’s name who operates out of the University of Pittsburgh Medical Center.  He is the pioneer of the Ivor Lewis MINIMALLY INVASIVE ESOPHAGECTOMY.  The surgery he performs is totally laparoscopic.  This is better for the patient in every way.  And many surgeons have traveled to Pittsburgh to update their skills, and new doctors are no doubt learning the latest techniques of the MIE.  I do wish that would have been the story of your husband, and I’m sure you wanted this for him too.  So now the doctor said, “As the occasion arises, he will recommend Dr. Luketich to anyone he comes in contact with that has an EC diagnosis.     

 I hope you’re healthy and you will do well to have someone to talk with you and help you sort out your emotions.  I'll think of you especially this Wednesday.  Your ideal wish would be for your husband to be made whole physically and mentally and your marriage healed.  That’s the thing that hurts the most.   You can’t spend a good part of your life with a mate and have that relationship broken without heartache and despair.  And it will take time to work your way through this loss. 

So my prayer for you is that you will heal eventually.  “Rome wasn’t built in a day” can be applicable to a lot of things.  Building a loving and trusting relationship takes time.  Sad to say, but you’re aren’t alone.  Marriages have been broken up because of this cancer diagnosis.  There was one girl that I thought went above and beyond the “call of duty”.  They were in the midst of breaking up but then the husband was diagnosed with Esophageal Cancer.  She “stuck it out” and did all the many helpful things a partner would do.  Then when he recovered from the surgery, they split up.  That was awfully nice of her, and I probably wouldn’t have done that frankly.  However, he was not mentally ill and was very cooperative with his doctors.  He was also most appreciative of his wife’s help.  The last I heard he was still okay.  But we’re no longer in touch.  I meet a lot of nice people on this site and overtime I have made some lasting friendships with some of them.  But we all met on this board because of a similar diagnosis. 

So Bobbi, I will say it is my pleasure to talk with you.  We have a couple of knowledgeable men on this board who respond to a lot of inquiries, but it just seems normal and logical that I would answer you because of the nature of your problem.  Know that I will be praying for you (really).  I will send you my phone number and e-mail address and if you ever want to talk to a “total stranger” again, give me a call.

Lastly, I’ve had a poem a long time that speaks volumes.  I sent it to my friend who had to have a police escort to get back in her own house to retrieve her belongings.  And I think it applies to you as well.  It was written by “anonymous”, but obviously one that had to make their life whole again and not depend on someone else to make them feel their life was worthwhile.  The first words are so true.  “AFTER a while you learn the subtle difference between holding a hand and chaining a soul…” 

Just remember Bobbi—you really do have worth—and you must, you can, and you will with God’s help make a new life for yourself.  And I pray HIS blessings will be with you as you travel down a new road.

Love & prayers from a “stranger”,

Loretta

____________________________________________________________________________________________

            " AFTER A WHILE

After a while you learn the subtle difference

           between holding a hand and chaining a soul.

And you learn that love doesn’t mean leaning

          and company doesn’t mean security.

And you begin to learn that kisses aren’t contracts

         and presents aren’t promises.

And you begin to accept your defeats with your head up

         and your eyes open, with the grace of an adult, not the grief of a child.

And you learn to build all your roads on today

          because tomorrow’s ground is too uncertain for plans.

After a while you learn that even sunshine burns if you get too much.

So plant your own garden and decorate your own soul,

           instead of waiting for someone to bring you flowers.

And you learn that you really can endure…that you really are strong,

         And you really do have worth."

(Anonymous)

 

LorettaMarshall

Bobbi~Prayers 4 both U & Your very ill husband

Hello again Bobbi ~

In these trying and difficult times just wanted you to know that "you have a new friend" who is praying for you.  Today is Wednesday.  Hope that your doctor has recommended an understanding counselor.  There will be troublesome and messy times ahead with many headaches as well as heartaches.  Eventually things will have to be settled, but we know that it's a rough road.  And when I use the word "settled", it doesn't necessarily mean it will have a fair, or good, or desired outcome for all concerned.  But sometimes we just have to "settle for" something we never desired!

Trusting that God will give you guidance as you weather this storm.  Wishing won't make it happen, but I wish that your husband had been able to handle his diagnosis, difficult as it is, with more acceptance. 

Am praying for God to give you strength for the days ahead, as well as help for your husband to "settle down" enough to make reasonable decisions.  

Love Loretta