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Blood Transfusions with esophageal and stomach cancer

Posted by rberry @rberry, Apr 10 12:57pm

My husband was diagnosed with esophageal and stomach cancer about 4 weeks ago. We are still waiting for excellent insurance to approve everything. In the meantime, we have received five units of blood in one week. I am so worried that he is going to bleed out at some point in time. The surgeons want to do chemo surgery, then chemo. That means he will not have surgery until late July. Every time we go into the ER for the transfusion, we have a doctor. Who wants to run every test in the book and try to figure out where he is bleeding from, as if we don't already know? When I refuse all of the extra tests and labs, they are so judgmental and make comments about how I could just let him lose blood like this and do nothing, and because I refuse, the hospital takes even longer to infuse the blood. We have tried two different hospitals now, and we live in a very rural community with few healthcare options. Has anyone else experienced this, and is there a way to not have to go through this kind of judgment?

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emersonmoon | @emersonmoon | Apr 11 11:16am

The one time I’ve wished we lived closer to the city is now. Cancer care can be difficult when living in a small town. I’ve felt like I was in a fight for my husband’s care since back in February when this basically started for us (he was diagnosed at the end of January). Everyone keeps telling me just to keep advocating. I agree that unnecessary testing isn’t ideal; it just puts your husband through more stress. Do they think the bleeding is most likely coming from a mass at “ground zero”? Maybe they can better explain why they want to do each particular test and you can make determinations from there. You both have a right to know why procedures are being done. I’ve also felt, at times, like my questions and input are annoying to medical personnel, but it’s important to be on top of things and I’m not going to stop. Try to be as nice as you can but don’t stop being proactive in your husband’s care; they have lots of patients but we only have one husband and they are our primary concern.

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rberry | @rberry | Apr 12 10:10am
In reply to @emersonmoon "The one time I’ve wished we lived closer to the city is now. Cancer care can..." + (show)
@emersonmoon

The one time I’ve wished we lived closer to the city is now. Cancer care can be difficult when living in a small town. I’ve felt like I was in a fight for my husband’s care since back in February when this basically started for us (he was diagnosed at the end of January). Everyone keeps telling me just to keep advocating. I agree that unnecessary testing isn’t ideal; it just puts your husband through more stress. Do they think the bleeding is most likely coming from a mass at “ground zero”? Maybe they can better explain why they want to do each particular test and you can make determinations from there. You both have a right to know why procedures are being done. I’ve also felt, at times, like my questions and input are annoying to medical personnel, but it’s important to be on top of things and I’m not going to stop. Try to be as nice as you can but don’t stop being proactive in your husband’s care; they have lots of patients but we only have one husband and they are our primary concern.

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I love that thought process about only having one husband and them having many patients. Yes, his bleed is coming from the tumor eroding through the stomach lining. We already know where the bleed is, and since it has increased in the last week, they are now looking at reevaluating the treatment plan. I am currently not stressed yet, even though I probably should be. I try to be as nice as possible to all the staff. I know they have a demanding job, and like you, if there is a justified reason, I am all on board. Lately, it has felt like it is just for money.

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Moderator
Colleen Young, Connect Director | @colleenyoung | 2 days ago
In reply to @rberry "I love that thought process about only having one husband and them having many patients. Yes,..." + (show)
@rberry

I love that thought process about only having one husband and them having many patients. Yes, his bleed is coming from the tumor eroding through the stomach lining. We already know where the bleed is, and since it has increased in the last week, they are now looking at reevaluating the treatment plan. I am currently not stressed yet, even though I probably should be. I try to be as nice as possible to all the staff. I know they have a demanding job, and like you, if there is a justified reason, I am all on board. Lately, it has felt like it is just for money.

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@rberry, how are things going? Has the approval come through and chemo will start soon? Has your husband needed additional transfusions in the meantime?

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