jillie
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I am so sorry you and your father are going through this. I was thinking about a dental block. Ask his dentist about this. He may be willing to come to the house and inject/block the nerve.
I remember those early days of my husband’s diagnosis very well. We, too, were involved with a community hospital, large university (NCI designated) hospital, then yet again another large university hospital in another state. The sheer red tape and detail managing of it all was mind-numbing. There were days where I spent the entire day on the phone. Other days with sheer frustration of unreturned phone calls, trying to schedule something, worry, and research, and more worry.
What I hated most of all was that everyone we encountered would tell us the tumor was agressive and that we needed to move quickly, yet the next appointment/test/consult would be scheduled weeks away. No one ever seemed to get the story straight. I still want to cry when I remember my poor optimistic husband dragging around his medical records, films, CDs, and slides from place to place looking for some good news.
Things will get better when you settle into a plan and a routine. Best wishes to you.
Jane, your last post was so sweet I can feel your love for your sister. I am my husband’s caregiver but my sister is my support. She is always there for me doing things before I even think to ask—stocking groceries, changing lightbulbs, doing laundry, etc. etc. etc. She stays with my husband to give me a break and is the only person I would trust to care for him.
There is something special about a sister. We expect to lose our parents some day. We expect to have man troubles along the way. But we always expect to have our sibling(s) to grow old with.
This was so heartbreaking to read. My DH is also 62 and suffering from one complication to another. Pardon me for being so blunt but did you mean that the clots would be a more “kind” way to pass on ? If so, I can understand your thinking along those lines.
If you want to continue the fight, did your doctor meantion a vena cava filter? These are often used in patients who tend to throw clots, are easily inserted in interventional radiology, and serve as a filter to catch clots before they get to the lungs. Perhaps there is a reason why this would not work in in Tom’s case.
No matter what you decide, I have come to learn that there is no wrong decision in this journey. You have always done your best at the moment and will continue to do so.
Best wishes for both of you. I will say a prayer just for you.
Sorry to hear of your setback, especially occurring on vacation away from home. Coincidentally my DH”s first sign of pancreas ca showed up as a bile duct blockage and high bilirubin while we were far from home as well. We flew home in great pain and a GI at our smallish community hospital had no problem doing an ERCP and placing a stent. This provided immediate relief, by the way. I think most GIs are familiar with this procedure. It is not major surgery.
Of course the subsequent steps of our journey, getting all of the testing, diagnosis, and chosing a surgeon and oncologist were trickier. Best wishes to both of you.
I am so sorry if my first post hit a nerve. I wouldn’t want my DH reading it or knowing how I feel. So I should have guessed it would sting the other patients out there. I am sorry but have to confess it did help reading some of the others and being reassured that I am not a monster for thinking this way. I just miss him, that’s all.
I will absolutely stand by him. It has been my pleasure to be married to this wonderful man and I will do all I can. I’m not complaining about him being a PIA or anything like that. I just feel like he has already left me in mind and spirit for the most part and that is achingly sad. Thanks for your insight. I have always read your posts with admiration of your strength and humor.
Reading this thread prompted me to finally register and post. And since some of the cc patients gave permission to vent—here goes. My DH’s personality did not change before diagnosis but the whole world has changed since. There are times now that I do not even recognize this person in appearance and personality. He is frail, bald, yellow, confused, and demanding and it breaks my heart. It also feels like he is somehow already gone even though he is still here and I know that sounds awful!
I am grieving for what we had, how we lived, and mostly for who he is (or was). I still see glimpses of my old husband but it is rare now that we have any conversation that isn’t about treatment or his comfort. He either has no interest in, or memory of, anything else.
I know this is about him, and not me. He is the one who is truly lost and suffering and I will continue to everything I can to help and support. Sometimes I wonder if this is God or Nature’s way of preparing us caregivers for the ACTUAL loss—by taking so much away gradually first.
