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Gwen, Daddy's girl

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Everything posted by Gwen, Daddy's girl

  1. "I can't do ALL this", I thought as I convinced the hospital schedular to make an appointment for both my boys to see the orthopaedic surgeon at noon on a day we would be at the hospital anyway. "I can't care for 2 disabled boys, a dying Dad an elderly Mom and a husband with a torn rotator cuff, and the houses and the yards." I can't do it ALL, but I haven't figured out which parts won't get done.....somehow, having accepted that I can't do it ALL; makes it easier to get things done.
  2. Hi Susan, I found this site just recently and have already been able to share helpful information with my Dad that I got here. Gwen
  3. And telling them "Thank you, you have made me so happy" especially if you can retell the story of a happy experience you shared.
  4. Sandwich generation, schmandwich generation. We are the pressed cuban sandwich on the hot grill with a cast iron griddle and brick on top generation. My older son has Down syndrome and my younger son severe cerebral palsy. Now Daddy has lung cancer and is too weak for treatment. I intend to write a review of coffee shops at the hospitals in Richmond, VA and Washington, DC. Throw down the towel! kick it and stomp it. Now ya gotta do laundry, damn it. OK get that washing machine going. (voice of experience: white laundry that has been bleached can wait 2 or 3 days in wash machine before it mildrews. Colored laundry left in the machine can cause colors to run in less than 24 hours).OK now SOMETHING is getting done. Breakdown jobs into managable tasks. Try not to think of the whole issue, just the next couple of appointments. Eat chocolate. Take a walk. Talk to the hospital Social worker, someone at any church. Know that we care deeply for you and your family.
  5. I wonder if the cachexia, which sometimes took more than a pound a day off of him, may have somehow consumed the tumor. And all your prayers helped too!! Gwen
  6. The Doctors certainly are looking for that tumor. It was biopsied so they know it was there. They are also going to keep checking those nodes. Dad is to weak for any treatments right now. But his spirits are much higher. Mmmm... mine too. He is willing to eat and will try almost any flavor of Ensure or Boost.
  7. You have come up with very good solutions. The social worker should help find some resources. You may need to push to get all the things your Dad needs. It's not a happy thing to deal with, but it has to be dealt with. I worry about moving to Canada with a pre-existing health problem. But it is a solution to consider. I did a quick online search and found info. There is travelers insurance and many other options.
  8. Drs. can't find Dad's tumor. They found it first in April. Did tests slowly. Diagnosed him on June 28 (adenocarcinoma stage IIIB) and started talking about treatments. He has had terrible pain and wasting disease. He just started morphine and was getting some strength back at home. A few days ago he was so weak and pitiful he asked to go back to the hospital. Tests were done again and the tumor....is gone..?
  9. My Dad also was just diagnosed (june 28)NSCLC. His looks to be stage IIIB. Even before the diagnosis I was finding so much support, help and information here. I was able to share with my parents what I learned here.
  10. My Dad has been in terrible pain these last three weeks. He was doing so well before, we were all but ignoring the mass in his lung. The pain and wasting desease came very suddenly. He was given the official dianosis yesterday: adenocarcinoma, one med. mass and 2 nodes involved. He was also given morphine tablets. Percocet was only just helping a little. Now that he pain has abated he is willing to eat!!! He is also walking and had his first shower since becoming so ill. He is also willing to talk about treatments. He and the Dr. agree sugery is not an option. He may still chose not to treat, but the decision will be more rational with out his desire to die to escape the pain. His voice is no longer pinched and he does not flinch at every touch. It was so good to hear his normal voice and hold his hand.
  11. I'm a porsche 911 too. I think I could fit it inside the van but then the wheelchairs wouldn't fit
  12. Welcome Siobhan, I too am new to this site. It as offered helpful information to my family. Gwen
  13. Dad was sent home He had not been walking. Mom staged chairs from the driveway to the bed. How did she get him up the stairs?? He still has a catheter. There is no home health care set up!! The home health co left a broken potty chair on the front porch for him.
  14. They sent him home !! With a broken potty chair !! Mom staged chairs from driveway to bed and helped him into the house by herself.
  15. They sent him home !! With some meds and a broken potty chair ! Mom says she can manage
  16. My Dad's bronchoscopy is dalayed for 1 week because he needs to let aspirin and plavix leave his system. The PET scan shows a small mass and 2 nodes, but there is still no official diagnosis. He does not want treatment but a lot of options can not be pursued until there is an official diagnosis. One nurse said it looks like a very aggressive cancer and the end may come in just weeks. Hospital says he can go home soon. But, home is not ready. I read here about pallative care. No dx no hospice. is that true? Mom yelled at nurse yesterday. (good for her. It was deserved) Nurse had wrong patient. Nurse said go home in 4 hours.
  17. Dad had his PET scan at Walter Reed. results were immediately available. (No waiting and worrying, what a relief.)There was a small mass and 2 nodes. Brochioscopy scheduled next. He can sit up some and is eating a little. He has lost a lot of weight, and was slender anyway. There is a great team at Walter Reed. His pain is managed, OT and PT are involved, and better planning for going home. He is suffering from intense itching. Blood acid is being tested. He has a lot stacked against him: rapid weight loss, low sodium, restricted fluids.
  18. On reading your post I let out a sigh of relief. You and your family have had so much to struggle with. The hospice sounds great. I'm glad it is there for your Dad. It's just nice to know that it exists. gwen
  19. Thanks for the tips. I have been the one who said call me if you need anything. I have been the one who said or did nothing because I did not know what to say or do. I know everyones' needs are different. As I learn from you all I will try to offer specific help and ask when I may come, How long to stay, etc. I would love to hear more opinions from more people.
  20. You and your family blessed your Mom with love and caring.
  21. My Dad's blood sodium is very low. It's laughable if you know of my Dad's affection for the salt shaker. Could this be the cause of great miserable pain and exaustion? He has had UTI so he was drinking extra fluids....but not extreme. A Dr. said that some cancers excrete a hormone that causes the body to dump sodium.
  22. Yes. My son had a abdominal tumor that grew out. In his case the gastroenterologist could see it, diagnose it, and treat it from the outside.
  23. Thank you. Now I understand what others are talking about
  24. Thank you for your reassurance and suggestions. The social worker is someone my Mom and I know about and neither of us remembered. Thanx for the reminder. Dad is being moved today to Walter Reed hospital in Washington DC. I think that is good. They will do a pet scan there. But Mom is overwhelmed. She was not ready for this change.
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