Guest guest Posted June 4, 2004 Report Share Posted June 4, 2004 a, Thank you so much for the kind words. I guess the hope that keeps me going is that tomorrow will be one of his good days. In reality, most of his days now are not all good or all bad, but he cannot get out of the house very much. On a good note, our family doctor finally called in hospice. YEAH!!!! We have been struggling so much with getting Jeff's pain under control. The doctor would only give him what was allowable for his normal patient's. I don't know if he has never been the principal care provider for someone with cancer, but that would be my guess. Since Jeff isn't taking chemo, his onc didn't want to manage his pain or do palliative care anymore. I guess not enough money in just keeping him comfortable. :-( Hospice is wonderful. ;-) For all of those who might be wondering about it, it is the best thing for Jeff. At this time, the hospice nurse comes out once a week. Checks him out, makes sure he is comfortable. Checks on any pain, physical discomfort or problems, even anxiety or depression or sleeplessness. Last week when she came out, upped his dose of oxycontin so that his pain level is tolerable. Then switched him from Percocet (which has acetaminophen in it, not good for the liver) to oxyfast, a liquid form of oxycodone that absorbs very fast for his breakthrough pain. Then she had sent to the house a hospital bedtray on wheels so that he could eat at the couch or even in bed, a cane to assist him in walking around the house since he can't use the wheelchair (house hallways and setup all wrong for it) and a shower chair so that he could sit while he takes a shower since he can't stand for longer than a couple of minutes without alot of hip pain from his pelvic tumors. When Jeff was having bowel problems (caused by all the pain killers) she immediately sent him a prescription for it. This week Jeff finally admitted to having anxiety attacks (he has them at night and wants me to stay up with him which is hard for me because school is out and our boys are up all day at which time Jeff can nap but I can't. Just wears me out. LOL) She has ordered him so Ativan and from what I have heard on here, sounds like it should help him with his anxiety. The social worker also came out this week. Went over DNR, Power of Attorney, and Living Will with us. Very depressing subject, but must be done. We finished the POA but are still going over the others and will finish those up in 2 weeks when she comes back out. She left 2 books for the boys that deal with illness and dying but for their age groups so that they could get some understanding about what is going to happen. All in all, Jeff and I are very impressed with hospice and wish our doctor had called them in 3 months ago. Sorry so long but just wanted to update everyone and help those who are struggling with the decision whether or not to call hospice. It has been wonderful and I know that they will do everything in their power to keep him comfortable. Becky Beach Caregiver to Jeff, 42 diag 8/01, recur 5/03 with liver and abd mets 7-03 ureter stent placement 9-03 liver stent placement 10-03-11-03 cpt11/leu/5fu 5 treatments 11-03 stopped all chemo due to side effects and no response 5-03 hospice called in > , > > It was many different reasons combined, but to say the number one > reason, I guess that would be > > 1) how bad he felt on chemo especially cpt11/5fu/leu. It made him so > ill and the more he took with breaks in between he got weaker and > sicker. Spending most of his time, either in the bathroom (diarhea > and nausea) or sleeping. > > Number 2) multiple oncologists telling him that no matter the > treatment the disease would eventually progress and in the mean time > he would have to continue some form of chemo, until the cancer didn't > respond anymore. > > I hope that answered your question. I wasn't happy with his decision > at the time but have sinced come to accept it. Each person with this > monster has to make their own choices and it is his body having to go > through it. > > I hope Darryl improves and feels better with the break. You are both > in my prayers. > > Becky Beach > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2004 Report Share Posted June 4, 2004 a, Thank you so much for the kind words. I guess the hope that keeps me going is that tomorrow will be one of his good days. In reality, most of his days now are not all good or all bad, but he cannot get out of the house very much. On a good note, our family doctor finally called in hospice. YEAH!!!! We have been struggling so much with getting Jeff's pain under control. The doctor would only give him what was allowable for his normal patient's. I don't know if he has never been the principal care provider for someone with cancer, but that would be my guess. Since Jeff isn't taking chemo, his onc didn't want to manage his pain or do palliative care anymore. I guess not enough money in just keeping him comfortable. :-( Hospice is wonderful. ;-) For all of those who might be wondering about it, it is the best thing for Jeff. At this time, the hospice nurse comes out once a week. Checks him out, makes sure he is comfortable. Checks on any pain, physical discomfort or problems, even anxiety or depression or sleeplessness. Last week when she came out, upped his dose of oxycontin so that his pain level is tolerable. Then switched him from Percocet (which has acetaminophen in it, not good for the liver) to oxyfast, a liquid form of oxycodone that absorbs very fast for his breakthrough pain. Then she had sent to the house a hospital bedtray on wheels so that he could eat at the couch or even in bed, a cane to assist him in walking around the house since he can't use the wheelchair (house hallways and setup all wrong for it) and a shower chair so that he could sit while he takes a shower since he can't stand for longer than a couple of minutes without alot of hip pain from his pelvic tumors. When Jeff was having bowel problems (caused by all the pain killers) she immediately sent him a prescription for it. This week Jeff finally admitted to having anxiety attacks (he has them at night and wants me to stay up with him which is hard for me because school is out and our boys are up all day at which time Jeff can nap but I can't. Just wears me out. LOL) She has ordered him so Ativan and from what I have heard on here, sounds like it should help him with his anxiety. The social worker also came out this week. Went over DNR, Power of Attorney, and Living Will with us. Very depressing subject, but must be done. We finished the POA but are still going over the others and will finish those up in 2 weeks when she comes back out. She left 2 books for the boys that deal with illness and dying but for their age groups so that they could get some understanding about what is going to happen. All in all, Jeff and I are very impressed with hospice and wish our doctor had called them in 3 months ago. Sorry so long but just wanted to update everyone and help those who are struggling with the decision whether or not to call hospice. It has been wonderful and I know that they will do everything in their power to keep him comfortable. Becky Beach Caregiver to Jeff, 42 diag 8/01, recur 5/03 with liver and abd mets 7-03 ureter stent placement 9-03 liver stent placement 10-03-11-03 cpt11/leu/5fu 5 treatments 11-03 stopped all chemo due to side effects and no response 5-03 hospice called in > , > > It was many different reasons combined, but to say the number one > reason, I guess that would be > > 1) how bad he felt on chemo especially cpt11/5fu/leu. It made him so > ill and the more he took with breaks in between he got weaker and > sicker. Spending most of his time, either in the bathroom (diarhea > and nausea) or sleeping. > > Number 2) multiple oncologists telling him that no matter the > treatment the disease would eventually progress and in the mean time > he would have to continue some form of chemo, until the cancer didn't > respond anymore. > > I hope that answered your question. I wasn't happy with his decision > at the time but have sinced come to accept it. Each person with this > monster has to make their own choices and it is his body having to go > through it. > > I hope Darryl improves and feels better with the break. You are both > in my prayers. > > Becky Beach > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 Becky: Wow you sure have a full load,but than God you have Hospice.Double thanks that they understand pain and anxiety. You need a minute to yourself and I am glad you had the courage to get the paperwork done..I hated it but it was necessary. Your boys will keep you occupied,if Jeff gets worse they will come more often. Tell the nurse if you need a couple of hours of respite,they can arrange that. Knowing you have done all that can be done,and that jeff should not suffer from pain,constepation or anxiety is a blessing. He will make use of the cane and the bed tray is really a big help....Can he get out on a porch or a stoop or just a chair for 10/15 minutes on food days,the sun does wonders. How about a plant or something somple to keep him occupied. .>>>>>>>>>hugs<<<<<<< and prayers for all of you. Nick & jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 Becky: Wow you sure have a full load,but than God you have Hospice.Double thanks that they understand pain and anxiety. You need a minute to yourself and I am glad you had the courage to get the paperwork done..I hated it but it was necessary. Your boys will keep you occupied,if Jeff gets worse they will come more often. Tell the nurse if you need a couple of hours of respite,they can arrange that. Knowing you have done all that can be done,and that jeff should not suffer from pain,constepation or anxiety is a blessing. He will make use of the cane and the bed tray is really a big help....Can he get out on a porch or a stoop or just a chair for 10/15 minutes on food days,the sun does wonders. How about a plant or something somple to keep him occupied. .>>>>>>>>>hugs<<<<<<< and prayers for all of you. Nick & jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2004 Report Share Posted June 5, 2004 Becky: Wow you sure have a full load,but than God you have Hospice.Double thanks that they understand pain and anxiety. You need a minute to yourself and I am glad you had the courage to get the paperwork done..I hated it but it was necessary. Your boys will keep you occupied,if Jeff gets worse they will come more often. Tell the nurse if you need a couple of hours of respite,they can arrange that. Knowing you have done all that can be done,and that jeff should not suffer from pain,constepation or anxiety is a blessing. He will make use of the cane and the bed tray is really a big help....Can he get out on a porch or a stoop or just a chair for 10/15 minutes on food days,the sun does wonders. How about a plant or something somple to keep him occupied. .>>>>>>>>>hugs<<<<<<< and prayers for all of you. Nick & jane Quote Link to comment Share on other sites More sharing options...
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