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Petie
Posts: 16
Joined: Feb 2013

My husband has stage IV EC. Diagnosed @ time of surgery 12/4/12. Presented unusually; intermucusal. CT did not pick up the extent. Surgeon performed his duty, yet did not get all that was in the esophogus. Performed total gastrectomy. Margins to the pancreas and lower abdomen; 6/6 lymph nodes positive upon biopsy. EGAD. Sought 2nd opinion @  Mayo Minnesota; no hope for surgery due to scar tissue; and mediasteinem + upper neck lymph nodes showing positive on PETCT. Just after surgery there was an esophogeal leak that resulted in an abdominal abcess. It was drained; radiologist clipped his lung upon removing the pig-tail tap - I have never seen another human being in so much pain other than childbirth in my life. Resulted in further pleural effusion, and the abcess remained strong. The man lost 40 lbs he couldn't afford to lose - he's always been very active. Tapped both pleural effusion & abcess again, and gave him a J-Tube. Have dealt with narcotics, nausea episodes that rack him and having me count the calories leaving his body during these episodes, lack of appetite, and all the usual accompanying bull$hit that comes with cancer. The only hope we've got is that he heals from the surgical wounds, and the abcess - while inactive at this time- clears, chemo. My husband has never been close with a cancer patient during treatment or surgery. He is clueless. And appears unwilling to educate himself - unusual for someone who is normally a very mentally, physically, and psychologically strong individual. He's a commercial fisherman by trade and does salmon, tuna, and crab. Tough man in every respect. I am a chef by trade, yet have been working with him these last years. I have fed cancer patients, and know from experience what to expect. Doesn't make it any better, though, many-a-time I find myself at my wit's end.

Have way too much experience with cancer; lost my Mama, Grandma, Oma, Tante, and many clients to this horrifying disease. On the other hand, I know survivors who are in their double-digit years and I rejoice every time I speak to them, think of them, well, you know. Without hope, there is really not much to look forward to.

So, That's who we are and what mayhem is going on. Thanks to all who post; makes the journey lighter when the load is shared.

Petie

Deborah J Cornwall's picture
Deborah J Cornwall
Posts: 32
Joined: Feb 2013

Petie, your comments to others were so insightful, it was clear that you'd "been there" and "done that." I congratulate you for reaching out to help others while you're in the midst of a tough experience yourself. It's possible that your husband doesn't want to educate himself because he's scared of what he'll learn and scared of the prognosis. I wish you the best to stay strong and creative in finding ways to help relieve his discomfort. Do press your medical team to engage palliative care experts, who can usually help relieve pain, nausea, and anxiety symptoms to make him more comfortable.

 

Debbie

Petie
Posts: 16
Joined: Feb 2013

Hi Debbie,

I finally got my tired and beat up self out of the house Monday morning and went to the local cancer support group - I have known I needed them for some time now, this website was help in getting me there. Your thoughts regarding palliative care echoed what input I found there, and while it is imminent on my planning here, I haven't acted on it quite yet. Perhaps tomorrow, while my husband will have his first esophageal dialation @ outpatient I will contact one of the Palliative care volunteers who also happens to be an avid hunter. I fear my husband will not be fond of this path, as he's not  very social individual aside from his own personal friends. However, there is a scuba meeting in the evening, that would give myself quite a positive boost. Am thinking to ask the volunteer to come and be with my husband while I go and refresh myself - even if it's not in the water, just the thought gives me joie de vivre. Barring complications, anyway. We've had so many of them in this short time. We'll see what ultimately comes of my plans; with any luck 'Life' won't happen and all will go smoothly. (You know the saying - you make plans and 'Life" happens....)

So, that's the anti-burnout plan here. Along with solidifying a relationship with the local palliative care team, as I cannot continue to do this alone. There is simply not enough of me to go around.

Thanks for the writ, Petie

Deborah J Cornwall's picture
Deborah J Cornwall
Posts: 32
Joined: Feb 2013

Good for you, Petie. Palliative care will help both of you because it will help ease his discomfortt and anxiety. But you need to take care of yourself at the same time, or you will truly burn out. Your plan sounds like a solid one. I wish you courage, strength ,and persistence, especially in terms of pain control. Palliative care won't require your husband to interact with anyone except a professional, but your ideas about getting some help and allowing yourself to have a few minutes daily for yourself are incredibly savvy.

I'll be checking in, but in the meantime, I wish you the best.

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