Any advice or encouraging words for Ray(Jr.)

rose20

The Oncologist wants Jr. to take the scope but Jr. is feeling uneasy about it. He has a fear this time even though he has taken it before. He does not want to be put asleep this time, but they need to see what is going on as he is now coughing up chunks of red stuff. Looks like red dogfood. Anyone know what this might be??
After that stuff comes out he is able to keep down liquids better.

And if any of you wives out there who are caring for your husband could give some words for Jr.'s wife Kathy.
She is at her wits end in knowing what to do.
She wants Jr to take this test because she is watching him dwindle down to nothing and she just does not know what to do anymore.
I talked with her yesterday and mentioned hospice and she said they have all talked with Jr about that but he does not want that.

I will copy your comments and send them to Jr and Kathy, they need to hear from others out there who are going through what they are going through.
Kathy is not good with the computer and Jr is unable to get on the computer.

Thank you all!!

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BMGky

Prayers for him and his
Prayers for him and his entire family. It is really up to him and his faith.

What is he wanting to accomplish by his action or non-action. If there is fear of the scope and being put to sleep, his medical care team should fully inform him why they are doing it; that if the results give information, they can better his condition and discomfort; that it is worth doing; and assuage his fears. Sometimes I've felt choices are left to the patient that are just too difficult to make while the medical team says, "It's your choice. If you don't want to, we'll move on." It may not be that the patient doesn't want to, the patient truly doesn't know what to do.

I sure don't have any answers. I do pray he and his family will find comfort in his decision. BMG

sangora

BMGky said:

Prayers for him and his
Prayers for him and his entire family. It is really up to him and his faith.

What is he wanting to accomplish by his action or non-action. If there is fear of the scope and being put to sleep, his medical care team should fully inform him why they are doing it; that if the results give information, they can better his condition and discomfort; that it is worth doing; and assuage his fears. Sometimes I've felt choices are left to the patient that are just too difficult to make while the medical team says, "It's your choice. If you don't want to, we'll move on." It may not be that the patient doesn't want to, the patient truly doesn't know what to do.

I sure don't have any answers. I do pray he and his family will find comfort in his decision. BMG

It's All Over Whelming
As the patient here, I can identify with Ray. Sometimes everything seems wrong. It is Ray's decision and I can also identify with feelings of hopelessness so what does it matter. On the other hand, I would say to Ray, don't give up as long as you can see the light of day and feel the love of your family and friends. The more information your docs have the better they can make you feel. My prayer today is that you will make the right decision for you and be at peace with that decision. Sam

Daisylin

For Kathy
I am so deeply sorry for the pain you are in, with your husband's care. I am the caregiver for my husband Lee, who has stage ivb. Rose has much love for you and her dear brother. She is deeply concerned for his well being. I have been following Rose's posts for quite a while now, your husband sounds like a wonderful man.

I can fully understand his not wanting to go for testing. I think, from my experience anyways, that he's probably just fed up with being poked and prodded all the time. I'm not saying that he shouldn't get the test done, but he's probably scared of several things. The first being that he may be scared that he won't wake up after the sedation. The second being that he probably just does not want to face any more bad news. I think the fact that he's spitting up red stuff is probably not great news. (and I'm sure he knows it too) Ignorance is bliss, or so they say. As we say here, it's his cancer, and his decision, so if he's totally set against it I guess you need to let it be. Arguing about it is not going to make things easier. I do hope that he changes his mind and has the scope done.

Watching my husband suffer is the most painful thing I've ever done, and I bet you must feel the same way. It's overwhelming, scary and frustrating. Not to mention incredibly, devastatingly sad. People often ask me how I can be so strong, but honestly, we're not strong, we just do what we have to do, for the love of our husbands. Also, I think if we quit being strong, even for a little while, we may just go a bit crazy.

If I recall correctly, Jr did not want to have a feeding tube. Please if you can reconsider this choice. My husband had one put in, and although it's a bit inconvenient and annoying, he's maintaining his weight and hydration. It truly has been a godsend for us.

As far as hospice goes, We are in Canada, and our hospice system is much different than yours. However, I am aware that they offer in home care, medication and pain management and also there are likely some programs that you, Kathy, could benefit from. There are support groups and also I think they offer such things as relaxing massages. Perhaps Ray would be willing to meet with them just to hear what they have to offer, before deciding it's not for him. I'm sure they would be more than willing to come to the house and spend some time letting you know what their services are. Perhaps, even if he's still not interested, you could benefit from some of their services.

I wish you all the best. We here on this web site truly understand and feel your pain. Please know that there are many of us here that think of you, and pray for you daily. Please take care of yourself while you struggle to take care of your husband. If you have computer access, you may wish to just read some of the posts here. You don't even have to respond to any of them, but there are a lot of us who are facing the same things you are, you may find comfort in our words. I know that this site has been my saving grace.

Be well Kathy
Chantal

chemosmoker

To scope or not to scope.....
Rose,
The SCOPE is so minimally invasive, and the risk of the sleep that they use is so harmless, compared to so many other procedures. I do not understand why he is so afraid of this. I have had several scopes and they are the least of my worries. They are 100% painless, have no after effects, and only serve to show the doctors a true picture of what is going on inside the stomach and esophagus.

Is he afraid he will not wake up? I have had Propofol, and sodium pentathol (sure spelled both wrong!) (that one is twilight sleep) and that I think, just depends on the doctors preference. Both are light drugs that do not put you under like the anesthesia they use for any major surgery from what I understand. They use them both at my dentists office for sedation dentistry. They should not risk his life in any way.

I do not have any idea what the red chunks might be, but I would sure want to know! The doctor should be asking for you to SAVE one of these chunks as a sample and bring it in with you. At the very least, even without the scope, the doctor should want to investigate what those are I am sure.

I will pray for you both. I will send strength his way that he may have a change of heart. I am one who understands completely NOT wanting to be in or near a hospital or doctors, who avoids procedures and can relate so well to his feelings I think. This is one procedure that would easily go through again if my oncologist or GI doctor asked me to, as it has been a breeze each time.

Hospice has been the BEST Godsend of this entire journey. They are excellent and ALL they are concerned with (here in the US at least) is your level of COMFORT, that you are pain-free and able to enjoy the time you have. That is their main and only goal, and they seem to do anything and everything to reach that end. The have worked tirelessly to get us our meds and ANYTHING else we have even asked for. They are a welcome force and should NOT be put off until "the end times" as that is a HUGE misconception. They should be there from the moment you are no longer receiving curative treatment, surgery or chemo. Period.

If there is ANY way I can be of help, please ask.

May God bless you and help you thought this difficult time together.
-Eric

jim2011

scope
I would do the scope. My first scope, I was really uneasy about it thinking about gagging and choking... just plain nasty but the first upper endoscomy was at the same time as a colonoscopy and all I remember is watching the clear liquid in the IV tube turn white and I was out till it was done. I would hope that they did the upper before the lower but I was afraid to ask. lol These people have done this procedure a million times.
I have had 4 throat dialations since the surgery and I have to say they are not as bad as you may imagine.
Getting down there with a scope to look/see and maybe getting a sample would seem to be the right thing to do. Those scopes even take great pictures that your doctor can email to others for opinions. I can-not think of one negative thing that could happen and lots of progress that could be made.

rose20

Thank you!
I have copied your comments and sent them to Jr and Kathy!

Today Jr is doing better. Tell me if any of you ever heard of this one.

Kathy was watching Jr. just barely sipping water so she told him why not just take a Gatorade and jug it down knowing it would make him throw up but maybe it would bring up whatever could be stopping him from eating. So Jr did it and sure enough he gagged up all that red stuff and then felt better. He then thought what would happen if he sipped on pepsi and so he tried and the pepsi stayed down, he then just took a big drink of pepsi and it brought up chunks of red stuff. He then felt like he could drink on some water and keep it down but Kathy gave him a cup of chicken broth and he drank it and it stayed down!!
This was last night.
This morning he ate some apple sauce and later some mashed potatoes. This is the first he has eaten in a week!
Whatever that red stuff is it seems to be clogged in there and when he gets it up he can eat and drink better.
He goes Wednesday to see the Onc. and Kathy is taking a sample of that red stuff.
He is using the pepsi to "flush him out" he calls it.

I guess whatever works.