tryingtohelp
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Thanks, ladies. Marty had a rough night. I woke up to check on him, he was in a lot of pain, saying pump is not working and asking how to hook it up. It was working for me. I guess he was in so much pain, he couldn’t think strait. Gave him last 20 mg oxicontin, 5 mg oxycodone and after a while he fell asleep. Called hospice to speed up the changes in pain meds… Dropped of prescription for morphine spray (prn). First they said they didnt have it, then found it. Will pick it up soon. Hope all will get resolved today… Frustrated!
Thanks, Liz
Well, husband is home now, but pain is not under control. Took a whole day to get him home, lots of waiting – for doctor’s orders, for home health nurse to bring pain pump, for hospital bed to be delivered and set and so on… A lot of coordination between different agencies. Glad that part is over. Pain wasn’t quite under control in the hospital either. Hospice nurse said his settings on a pain pump are way too low and was going to talk to his doctor tomorrow about trying out morphine 2 times a day (just what you said, Lainy!) + prn meds and/or getting pump settings up – increase the doze. She also said that patches usually work less efficiently on skinny people, as it needs fat tissue to get absorbed, and my husband as skinny as can be right now. So she thought it’d be better to switch him from pump/patches to morphine…We’ll see what the doctor says. She also wants to try dulcolax suppositories for him to relieve stomach pressure (if doctor approves). She seems efficient and pro-active. Not sure if she’d be his main nurse or not – it was after hours visit, therefore it was on call nurse; will find out tomorrow. Not quite used to whole hospice idea, time will tell. Thanks for listening!Thank you, Marion. I think we found a hospice that would allow TPN. Now checking if insurance would pay for it. That is what he wants as well. Basically he does want to prolong it, but we also discussed that if it gets unbearable, as in vomiting non stop – then we will make different decision. We decided its worth a try. And for my piece of mind, I’ll know we tried it all. Otherwise if he decides to go without tpn, you can’t change your mind later. If it doesn’t work out with insurance, then we’ll continue with home health. In either case, he will be home. There is no hospices here that have in-patient facilities. For now, they removed NG tube completely and we are waiting to see if he can manage pain and nausea. Thanks again!
Well, talked to the doctor this morning. He recommends hospice with pain management only. He says he’ll probably have 1-2 weeks without nutrition. I asked about TPN – he said it will add few more weeks, but most likely will have vomiting daily. He said he himself would have chosen hospice to reduce suffering. I didn’t talk to my husband yet – what he’d want. I still think TPN would be the way to go and if it gets to unbearable point, then go with hospice.
Marion, how long did it take for your husband from the point they offered hospice (and he refused) till passing?
About the whole handling the situation – in nurses defense, I was pressing for information and they told me what was in doctor’s notes. And since I’m working full time, I wasn’t able to be there when doctor was. But he called me this morning and explained most of it. Of course now I have more questions…Hi, Bob and Nancy
My husband was 1 month and a half on Xeloda and couldn’t handle it. He was getting very strong cramps in his stomach and since those are pills, he was keep reducing his dose. It is convenient to have chemo as a pill, but it also gives patient control on to take or not to take it and for us it didn’t work out. It seems that this drug in IV form (5FU) had less side effect for him, at least initially.
But everybody has different experience with it, so hopefully yours would be better! Good luck!
AllaThank you, Lainy, for your email – appreciate the information.
Marion – since your husband was on TPN, did you use hospice at all? If yes, did they allow use of TPN? By the way, my husband’ first name is Marion (family name), but he goes by Marty…
Still haven’t heard from the doctor, but the nurse said that doctor had wrote in the notes that he advices discharge home with hospice. My husband’s reaction to it was – “Doc had given up on me”. I was at loss for words…
Currently they disconnected the NG tube, while still leaving it in the nose/throat, to see if his bowel would start working. My understanding, that they will slow start introducing clear liquids to see if he can produce stool (sorry for details…).
Since I haven’t talked to a doctor and don’t know any details of the scan and what is his reasoning is, I only can say this for sure – I can’t agree for sending him home with hospice, if there is no TPN and his bowels are not working. In my mind it’s sending him home to starve to death. Am I overreacting?
Just want to hear some opinions… Thanks again, AllaThank you all for your support. We are still waiting to find out what is next. Surgery is definitely out. Oncologist is coming back only tomorrow morning, but “might” call me tonight according to the nurse. So nothing is being done, other than continue TPN and NG tube. Getting confusing information from different people – husband said that oncologist wasn’t talking about hospice with him at all, so why nurses asked us about it? Case manager from hospital asked me today if we are planning on him being discharged home. She checked doctors notes for me and said there was a note about him having feeding tube. Even more confused – if they can’t do surgery, how would they do feeding tube? If he goes to hospice – they don’t do feeding tube. Plus
if his bowels not working, where would the food go? Mixed messages… Hope doctor will call me and explain!
Lainy, wanted to ask you, when you were on your “second honeymoon”, was your husband able to eat ok? Did he have good days? What was his cancer marker when he started hospice?
Thank you all!Thank you, Marion. Husband is more or less comfortable in the hospital – as much as you can with the tube in the nose and throat… Has nausea, even with anti-nausea meds. Pain pump helps to keep the pain level at about 2. His oncologyst was off this weekend, so no definite plans on what next yet. According to the nurse, the options are limited to mesh stent, if the gastro-doctor is brave enough to try it, or do something like a colostomy bag. Surgery to remove the tumor that caused blockage is not on the table. Found out (also from nurse) that liver tumor had increased to 6 sm and bunch of other tumors in the stomach area, and they started talking about hospice. What worries me, that with hospice the option of TPN is not available, but since he wasn’t eating for a while already, wouldn’t it speed up the process? His weight yesterday was about 107, fully dressed and without food yesterday I’m sure it’s even less now. The nurse was guessing that he might have couple of months. Of course, I’m jumping to conclusions, before actually talking to a doctor. My hubby didn’t even tell me that they were talking about hospice – his nurse told me. Luckily he got our favorite nurse today, that we’ve known since the beginning of this journey and she is wonderful. I guess I was still hoping for better news and outcome (more time), but reality sinks in and I can’t stop crying. Dreading that we’d need to have a talk with the kids – 15 y old and almost 6 y old, as well as talk with each other to discuss all arrangements. Not ready for it at all! Thanks for listening!
Sincerely, AllaThank you all for the support! I’m relieved that they found the reason for the pain and hopefully be able to fix it soon. He is exhausted from all this pain and vomiting. Lost more weight in those few days. Hopefully we both be able to get some sleep tonight.
Marion, the link above keeps taking me to the first page of my own post…
Thanks again, AllaBased on CT scan – he got bowel obstruction. The ER doctor was rather vague and said he thinks tumor is what created the obstruction. Not sure what else he saw – didn’t give much information. Anyway – hubby is getting admitted to the hospital. They put the nasogastric tube into his nose to try to fix it. It sounded that surgery might be needed or not – they are not sure at this point. Gave him another dose of Dilauded, that is helping. I’m relieved that his pain level is now at 3 vs 10.
Now my question is – anybody had bowel obstruction because of the tumor and what was done to fix it? Thanks again!Thank you, Lainy and Laurie. I was afraid he was already on too much of pain pills, but his breakthrough oxycodone was only 5mg (2 pills at a time). Of course the patch is now 200 mg now, which didnt make any difference. He also took 20 mg oxycontin twice a day. Did your husbands experience constipation after all those pills? It sounds like patch didn’t work for either of your husbands?
Thanks, Lainy. Waiting for the results now… What was the exact name of 12 hour pill your husband was taking? And name of the break through pill? If you don’t mind me asking…
