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What a Beast

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

I have had many experiences with cancer in my family. My mother suffered with breast cancer as a test subject for 28 years with 12 recurrences before cancer won. My father died from cancer of the throat. My sister survived kidney cancer. My other sister breast cancer. My uncle colon. I thought I had seen the worst. Cancer is horrible in any form, and while not belittling their battles and pain and suffering...I have never encountered as disease as horrific as this one. Even Drs in other fields, such as Larry's urologist have said " oh that's a tough one". As a caregiver to all of my family members I will say this has been the toughest for me as well. I'm sure alot of it has to due with the fact that my husband has been so uncooperative much of the time. From refusing nausea meds during chemo to refusing to use jtube. It is so hard to watch them suffer. Daily life can be a challenge as well for the caregiver. I seem to wander around the grocery store not knowing what to buy, and have spent a fortune on an assortment of items for Larry to try. I always end up with new protein infused items along with groceries that end up going to waste because I don't have the heart to eat in from of him. Then there is the celebrations when a certain food works. Larry hates the wedge so we have the head of our bed raised, which works well for him, however I spend the whole night climbing back to the top. This always resorts to me being up at 4am venting to all of you.  However there is such contentment in my heart when I climb into bed because my husband is still by side. What a rollercoaster.I am always worried, always fearful. I pray evertime I am alone. I pray for Larry, for my family, ask for strength, and I pray for all of you. And I am angry. I am so mad at Larry's primary care Dr for giving Larry pills for heartburn for the past nine years and never ordering a scope. It took 10 minutes with the PA when his Dr wasn't available for her to say "Larry I'm afraid you have esophageal cancer". Within 24 hours we knew. The suffering that all of you go through is overwhelming. I do however see a beautiful pattern here. We all, patients or caregivers came here for a reason. For questions and to share our stories. The beauty is so many remain to help others. You are all so brave. Thank you. I don't mean to sound so whiny, Just tired and venting.

South Side Steve's picture
South Side Steve
Posts: 24
Joined: Nov 2011

Laura,

You don’t have to apologize for venting. I firmly believe EC is harder on the caregiver than the patient. The patient has to suffer the physical aspects of the disease, but the caregiver has to fight the emotional aspects of it. I think the physical aspects are easier to treat and manage than the emotional aspects. I know my wife felt so helpless when radiation had burned my esophagus so badly I couldn’t even swallow water. She kept trying to get me to eat because I needed nourishment, but I couldn’t eat or drink anything because of the pain. Thankfully, she didn’t give up on me when I was less than a “perfect” patient.

 

I can also relate to your bed issues. I slept in a recliner for the first month after surgery. I tried a wedge, but it killed my back. We also tried raising the head of the bed with the same results you had – we ended up sliding down to the foot of the bed. My insurance would pay for a hospital bed, but I wanted a full size adjustable bed that my wife and I could share. After spending a week on the phone trying to negotiate with the insurance company to at least pay for the mechanical portion of a regular bed, I gave up and just bought an adjustable bed on my own. The insurance company refused to pay for anything that didn’t come from one of their in-network medical devices providers, even though what I was asking for was less expensive than a single hospital bed. We bought a king adjustable bed, which is actually two twin beds that are each individually adjustable. It has been the best purchase we made. I sleep great with no back issues.

 

Hang in there and take comfort in knowing that, even though we patients may not tell you enough (if we do at all), we really do appreciate everything you caretakers do for us. This is especially true when we’re crabby and don’t cooperate with you when you’re just trying to do what is best for us. It does get better as the patient heals. Pretty soon, you both will be looking back at these times and laugh. Good luck.

Steve

 

callerid
Posts: 99
Joined: Dec 2012

You have expressed what so many of us feel.                                                                                                                                       My husband had a persistent cough and was always diagnosed with bronchitis His chest x-rays were always clear. They attributed the mucus to sinus drainage. He was always prescribed antibiotics, steroids, or an inhaler. This went on for years. He finally self referred himself to a clinic where he got the EC diagnosis. But it was too late. It had already metastisized to other parts. He has not told the his personal care doctor about his diagnosis and requested no records be sent.                                                                                                                                                                                                   Anytime you need to vent there are people here ready to listen. Take care of yourself!!

Dad'sfight
Posts: 155
Joined: Feb 2013

I couldn't have said it any better!!!! Laura, you have no idea how much of a blessing you have been for me and dad, Larry too!!

P.S.
I feel sorry for my mom, I got dad an adjustable bed and she too is probably trying to climb back up. That sentence made me laugh, because she probably doesn't have the heart to tell me. Me picturing it in my head, makes me laugh. My mom is so much like you, she would suffer before telling me. Thanks for the laugh and the tip, I'm going to have to ask her tonight.

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

Its been two years and four months since my husbands surgery and we still have "soft" food left over from things he tried.  I really should clean out my pantry.  I remember wondering around the grocery store feeling strangly out of place. 

Its good to vent!  You need too.  Don't ever feel bad about being open and honest. 

 

Lee Ann

 

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

Steve, thank you for the kind words. I want to look into an adjustable bed as well, however Larry is not ready to give in to that yet. For Larry it is too "permanent". I know he appreciates everything, he is angry and frustrated and I don't blame him. Callerid, thank you as well. I don't know what is wrong with Primary Care Drs. Either they are not paying attention to the warning signs, or they are just too busy to care. I am so sorry that your husband was diagnosed so late. Our attorney friend has been encouraging me to demand the "physical" record from that Dr. He said even though Larry downplayed his symptoms for everything Larry always did listen and have testing done when ordered. The Dr never hesitated to order stress tests, PSA and ultrasounds for prostrate, and colonoscopies. He should have ordered scope. Our friend has already filed malpractice for 2 other cases for EC against this man. The surgeon said he has this a long time. Gastro said it's been a long time, radiologists said he should have ordered scope. Would have caught the Barretts years ago. So frustrating. I am asking for records, don't know if we are moving ahead with any lawsuit. Dadsfight, what is your name? LOL. I hope your dad continues to improve. Your comment made me laugh. Thank you. LeeAnn, funny I need to clean out my pantry as well. Yesterday I went grocery shopping and bought everything in sight. I was so damn hungry! Spring weather is upon us here in Michigan which means our grandchildren will be here on an almost daily basis, so they will eat what we don't. Larry actually ate a cookie and didn't have a reaction! I was so happy.

Dad'sfight
Posts: 155
Joined: Feb 2013

Hi Laura,

Sorry, I thought I had put my name out there.  It's Justina "Tina". 

Having the grand kids around will help Larry.  When we skype with dad's grandkids it seems to lift his spirits.  Wish they lived closer though, it might be a way to get him to move more. I know how you feel about the missing dx of EC.  The same thing happened to dad, except we went to hospital twice with the same symptoms and even though they did CT's etc.... They missed it. I was so angry when he was first dx, and still am. If they think you have a case I would go for it, maybe this particular doctor needs to learn how to practise.  Sounds like you could save someone else since he's missed other's also. I'm glad Larry ate a cookie with no problems!!  THAT'S PROGRESS IN THE RIGHT DIRECTION!! WOO HOO!!

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

It does good to vent,especially to people that walk the same walk you do and understand. We tried the raised bed and like you,  spent half the night climbing the hill. The wedge with a pillow on top, works fair for me, but I don't like it. After five years I still have trouble of rolling off. It happened last night and the reflux that woke me, was very bad. I will always reflux if I am not raised. This scares me because of the fear of  aspirating. This has happened a couple of times and it is very scary. My next bed will be and adjustable, because sleeping raised is a permanant way of life for a EC survivor.

It is a natural thing for women to be nuturers. We worry a lot more about feeding our loved ones.  I had a hard time with food during my recovery, but I don't remember my husband being overly concerned. But like I said, I beleive this is more a woman thing. God instilled it in us.

Sandra

servman86
Posts: 8
Joined: May 2013

Hi Laura,

Your post made me smile and cry at the same time.  I am a 14 year survivor of stageIII EC.  Even after all of these years, I remember trying to find some kind of food that I could stand to eat or drink.  I wasted a lot of groceries.  Your husband is furtunate and blessed to have someone like you by his side.  I too, was not always a good patient, and today I still get frustrated sometimes with the results that I deal with from this dreaded disease.  But, I am still here! I did get to walk my daughter down the aisle at her wedding ( she was 14 when I was diagnosed).  I did get to see my son graduate from high school and now complete his first year of college (he was 6 when I was diagnosed.  Your post brought a flood of memories back to me of when I was going through my treatment, and it is a difficult time for everyone.  Being this far out from treatment, I will tell to be patient with your patient.  In hide sight he will realize how blessed he was have your love and care and nuturing to help him through this.  He appreciates everything you try to do for him, even if he grumbles or resists it, in side he knows it is out of love. 

I wish you both the best of luck.  Take this from a long term survivor of this beast.

 

 

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