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Medical Forum / Diseases and Disorders / Cancer / July 2005Getting pain under contol
Socks has had almost unbearable pain - primarily bone pain - the last 2 nights, beginning around dinner time. His regular hospice nurse came out today & maybe he's a good actor & she didn't suspect his pain level was as high as it was or ???... His whole day was painful, so much so that he opened & read all of his remaining cards. Then tonight the pain was moving on, so I called hospice & asked them to come out. Now they are working more aggressively to control his pain. Things will probably improve dramatically when Aunt Ruth arrives (tomorrow night, TYG). The night nurse tucked him in with small pillows here & there to relieve pressure points. One of the 'pillows' I found was a soft teddy bear. A bear for un-bear-able pain? Seems to work. We are now awaiting a midnight delivery of liquid morphine. Tomorrow hospice will reevaluate his pain med plan. I feel much better about this than before the nurse came tonight. This has been a highly stressful week & it's only Tuesday. However, most of the stressors are resolving favorably. The dentist fixed my tooth, at least temporarily. The car was repairable - $850 rather than thousands - & it appears my breathing machine will be repaired following a protracted drama involving more parties than anyone would deem reasonable. If I weren't so exhausted & still needing to ready Aunt Ruth's bedroom, I'd write out my blessings. Isn't it amazing how many more we have on a daily basis than we consciously realize? Any you, my cyber faithful friends, are at the top of the list. Sweet dreams, sweet socks. May you sleep through the night & feel better in the morning. Fig > Socks has had almost unbearable pain - primarily bone pain - the last 2 > nights, beginning around dinner time. His regular hospice nurse came out [quoted text clipped - 35 lines] > > Fig Fig When my Dad was really in pain he was given MST . He had liquid morphine to top up - basically drink at will when needed. His pain was the bones too as the cancer had spread to his pelvis. Why does Socks need to wait to take his liquid? Take care of yourself too, Fig. You must be running on near empty now chick. Thank God help and support in arriving in the form of Aunt Ruth so very soon. Sinead > Take care of yourself too, Fig. You must be running on near empty now chick. > Thank God help and support are arriving in the form of Aunt Ruth so very > soon. What she said. {{{{{Hugs}}}}}  SignatureI try to be a good example to my children, but they just see me as a dire warning. > > Take care of yourself too, Fig. You must be running on near empty now chick. > > Thank God help and support are arriving in the form of Aunt Ruth so very > > soon. > > > What she said. {{{{{Hugs}}}}} And what she said from me too. Warm Hugs Alayne >> > Take care of yourself too, Fig. You must be running on near empty now > chick. [quoted text clipped - 9 lines] > > Alayne also me. I see my future. SignatureLori Devoted wife of Curtis Prostate cancer mets to bone at age 40 "Lorelei" <curtandlori@earthlink.net> wrote in news:NQaBe.9583$aY6.1552 @newsread1.news.atl.earthlink.net: > also me. I see my future. > >Lori, I am so sorry. I wish you all the kindness & support that has been given to us. >> Socks has had almost unbearable pain - primarily bone pain - the last >> 2 nights, beginning around dinner time. His regular hospice nurse [quoted text clipped - 49 lines] > > Sinead Sinead, What is MST? Socks was taking the liquid morphine, but he was underdosing (taking according to directions, but dose was'nt enough. Now he can take 1-3 ml? (don't recall unit of measure) every 20 min to 1 hour as needed to get on top of pain. YES, hurry Aunt Ruth! Fig >>> Socks has had almost unbearable pain - primarily bone pain - the last >>> 2 nights, beginning around dinner time. His regular hospice nurse [quoted text clipped - 60 lines] > YES, hurry Aunt Ruth! > Fig Fig If I remember correctly it is Morphine Sulphate. He took it twice (?) a day and it is slow releasing. So his main pain relief was the MST ( he was on a high dose of this) and then he had his bottle of liquid morphine to stop breakthrough pain. Your hospice guys need to keep the pain relief at a constant so that he needs only to self medicate when the time to take the next MST is coming up. The real problem was break through pain, if Dad didn't take the liquid and the MST was not due then the pain became unbearable. It is harder to take the pain away than it is to keep it at bay, if you see what I mean. Once it becomes established it is a harder beast to control. My Dad was a brave strong man with a large pain threshold too and he was a stubborn bugger about taking his meds. His reason was that he wanted to save something for later when the pain got too bad at the end. He was terrified that if he used upthe morpine that there would be nothing left to give him when he was dying. (It took an age for him to admit this to us) The doctor eventually convinced him that he had a whole lot of drugs in his arsenal to help him die peacefully. I have no idea if MST is available in the States, but I am sure that J or Steph will be able to help with that. Hold strong Fig, I know the hell you are facing. We will all be here for you. Many hugs to you and Socks Sinead "Sinead" <Sinead@invalid.anon> wrote in Sinead, I am grateful for this info. Hospice is simply not supplying the quantity he needs. The emergency, middle-of-the-night delivery last night was 20 ml. With the maximum dosing instructions, that's a 2 hour supply. He received nothing today. So unless he rations it out, he will run out in less than a day. They are creating a string of emergencies around this instead of giving him a few days' cushion. Hospice was also supposed to arrange the pick-up of our equipment from another supplier - concentrator, liquid oxygen tank, 2 portable tanks & a wheelchair. I pay copays on this stuff. We don't need the duplicates they're taking up a lot of space. Everytime I talk to them, thy say they don't know why it hasn't been picked up. Maybe I'm just crabby tonight from lack of sleep & all the recent stressful events. I don't know why they're not giving him enough drugs to match their dosing instructions. Aunt Ruth will discuss this with them tomorrow. Does anyone know how many days of worth of drugs a patient normally receives? Ours are normally sent via overnight mail except for the emergencies for which we pay $10 day, $30 night & $50 weekend. Ouch! Thanks so much, Figgertoes > "Sinead" <Sinead@invalid.anon> wrote in > [quoted text clipped - 25 lines] > Thanks so much, > Figgertoes Fig Do they not just complete a scrip for you to collect at a pharmacy? Dad had buckets of the stuff (once the family had been checked to amke sure we weren't about to sell it) Sinead > "Figgertoes" <me@privacy.net> wrote in message > > [quoted text clipped - 17 lines] > buckets of the stuff (once the family had been checked to amke sure we > weren't about to sell it) And how and when do they check out the family? An interview with each or what? They've had 11 days to do that re Socks J >> "Figgertoes" <me@privacy.net> wrote in message >> > [quoted text clipped - 26 lines] > They've had 11 days to do that re Socks > J J Dad had a week's worth at a time. The pallitive staff and the onc had come to know us from hospital visits etc, so there was no interview. You are forgetting, we live on a small island and everyone sorts of knows who is trouble and who isn't. We had to ensure that the house was locked at night and when we were out (yes, we can still leave the house open and clear off for the day) and we were to tell no one that the morphine was in the house. Other than that thay let us get on with it. I can honestly say that running out of meds was never an issue... in fact when Dad died we took lots back to the pharmacist. Fig, What I cannot understand is how come you are being left in such short supply that you are running out and that Socks feels he needs to ration. Surely this goes against the whole point of hospice care. Socks should not be in pain FULL STOP. I hope Aunt Ruth is there with you now - you cannot do this all on your own. And remember to eat!! :-) Love to you all Sinead >>> "Figgertoes" <me@privacy.net> wrote in message >>> > [quoted text clipped - 52 lines] > Love to you all > Sinead I don't understand either. I agree completely. Aunt Ruth will deal with them today. Better her than I. I would probably be 'not so nice' as I am getting pretty fed up. Fig >> "Figgertoes" <me@privacy.net> wrote in message >> > [quoted text clipped - 24 lines] > or what? They've had 11 days to do that re Socks > J No junkies here. I don't take anything I don't have to. Am very sensitive to allapathic drugs. A muscle relaxer takes me away for 2-3 days. Fig > No junkies here. I know that. Hospice doesn't Sinead offered that as a possible reason why they're meting out smaller quantities. My theory is that they get to charge the insurance (and you for the copays) more that way. Another possible is that they had previous problems http://www.hospicepatients.org/usdoj-dea-ofclist.html http://www.dora.state.co.us/medical/Policy40-6.htm I'm sure disappointed in hospice either way. I wonder, if it can't be sorted, if his family doctor would prescribe his pain meds for him, which leaves me wondering, with Aunt Ruth there, whether you need hospice at all. Hugs J >> No junkies here. > [quoted text clipped - 12 lines] > Hugs > J The niggling quantities they sent out would not allow him to take the doses they were prescribing. Maybe, & this horrifies me, they ARE playing a financial game & Socks is a pawn, He was under-medicated. Everyone seemed to agree on that, but still they didn't provide an adequate supply. Maybe this is behind us now because today we met with his doctor & nurse at our house (surprise meeting probably brought on by my call to hospice this morning). They are transitioning him cold turkey to methadone only. He will take 3 pills (10mg each I think) every 3 hours as needed. After 5 days, they will set his dose. He will have nothing at all for breakthrough pain. They don't anticipate his needing anything. They usually put the patient in the hospital for this, but, because of Aunt Ruth, we can do it at home. Aunt Ruth & I aren't getting along very well because she will tolerate no criticism of hospice. She overheard me on a phone conversation to a girlfriend & gave me what-for. I know I'm exhausted & stressed, & I know even the little things are setting me off, but the truth is they made him suffer over & over. Unnecessarily. They talk a good fight, but they have not been following through. A couple of hours after they left, a package of medicine arrived for thrush. There was a $10 delivery fee even though I have told everyone over & over that I will pick the stuff up to avoid the fees. They ordered it while they were here, but I had no idea they were going against my wishes about the deliveries. All of that duplicate equipment is still here. Aunt Ruth said to pay the fees & forget about it. I know it's a small thing, but I am sick of not being heard. I want to fire this hospice. Aunt Ruth says she will deal with them & it probably is not a good idea to switch - if we could -in the middle of his transition to methadone. I hope I never see or talk to any of them ever again. I feel constantly betrayed by them. I pray that the switch to methadone is truly in Socks best interest & isn't being done simply because it's far cheaper than any similar pain medication. I don't want to alienate Aunt Ruth. I am going to have to bite my tongue constantly to get through this. We do need a hospice because Aunt Ruth is not knowledgable about pain meds & the regular docs aren't willing to prescribe potentially adictive drugs, as these are. Sorry for the ramble. I need sleep & am off to get some. Fig >>> No junkies here. >> [quoted text clipped - 59 lines] > > Fig "potentially addictive drugs" What do they think? Socks is gonna become a junkie?? Honey you need more support than you are being given. Trust your instincts. If you feel that he is suffering unnecessarily go give them hell. Do you pay hospice or is this a service like we have here? Sometimes when one is getting stuff (by this I mean Sock's treatment) for free, then one does hesitate before complaining. Don't. You know him best chick and you are doing your best to make him comfortable. I understand what you mean when you say that they talk the talk, but if they are not delivering then go get 'em. If that means you asking Aunt Ruth to sit with Socks whilst you go hide in another room and call them you do it. You do ANYTHING that you feel is needed. It will make you feel so much better too. My heart goes out to you, I have fought the fight with the peeps who medicate, and belive me it was a battle. But seeing Dad pain free was worth it. I wish I could come kick some butt for you - I am very good at it according to my hubby ;-) Hugs Sinead >>>> No junkies here. >>> [quoted text clipped - 86 lines] > Hugs > Sinead Socks has a comprehensive medical plan administered by Kaiser as a provider for Medicare, a gov't program for retired & disabled folks. Once he goes to hospice, we pay no more - except "emergency" medicine delivery fees. We do pay a monthly medicare premium & the supplemental premium to Kaiser. Aunt Ruth will be doing all the hospice contacts, at least for awhile. Socks did OK on his new treatment plan overnight. If his pain ever gets out of control, I will intervene if necessary. These hospice people scare me to death. When I called Wednesday night, they offered a nurse. I said I wanted a doctor. They told me the doctor on call was the director & had left strict instructions not to be contacted directly. If the nurse needed him, she would call. And she did. I called back & insisted on a doctor before the nurse arrived & was refused again. Then the doctor who came out yesterday said it made no sense for them to have told us Socks should dose with the liquid morphine every 20 minutes to an hour because it takes close to an hour for it to have an effect. I wouldn't think they are breaking new ground in controlling pain. They have been doing this for many years & should all know how the meds work. At the same time, they want to bring food from a food bank! Why? We eat almost all fresh foods, lots of organic. These are pantry items. I'd prefer the food bank supply the hungry. We should not be entitled to this. Socks has lost the will to live, but maybe he'll rally once the pain control is steady. I am here for Socks & will continue to look out for his beat interests. Thanks for all the caring messages. You are the best support group ayone ever had. Love from Figgertoes > Aunt Ruth will be doing all the hospice contacts, at least for awhile. > Socks did OK on his new treatment plan overnight. If his pain ever gets [quoted text clipped - 4 lines] > on call was the director & had left strict instructions not to be > contacted directly. The bean counter went home and left it up to the nurses. Probably just as well, but for the contradictory communications coming out of there. > If the nurse needed him, she would call. And she > did. I called back & insisted on a doctor before the nurse arrived & was [quoted text clipped - 3 lines] > have told us Socks should dose with the liquid morphine every 20 minutes > to an hour because it takes close to an hour for it to have an effect. I'm sorry that Mike Radcliffe isn't here. Tell Socks, Mike's been desperately trying to access the newsgroup. Must be a problem with his laptop (again). I'm sure Mike wanted to be here for Socks. He could confirm or clarify about the pain medications. I hope Mike gets whatever problem sorted soon. > I wouldn't think they are breaking new ground in controlling pain. They > have been doing this for many years & should all know how the meds work. [quoted text clipped - 3 lines] > prefer the food bank supply the hungry. We should not be entitled to > this. Sounds like what I call "pencil pushers" going through a calllist and calling everyone to make sure nobody's been missed. Don't be surprised if they call again about that or something that's not at the top of your list. > Socks has lost the will to live, but maybe he'll rally once the pain > control is steady. Sad to hear that, but I expect Socks doesn't countenance stupidity like the food bank call. What is hospice but to primarily be there for pain and the reassurance that pain will be taken care of. I too hope he will rally. > I am here for Socks & will continue to look out for his beat interests. I'm sorry hospice isn't there for you, Figgertoes. The "hospice" blush has lost it's lacquer, here, at the moment. I can only hope that these are bureaucratic speedbumps and they'll get it in gear and from hereon deliver smoother sailing for all of you. Many hugs and love, J > I'm sorry that Mike Radcliffe isn't here. Tell Socks, Mike's been > desperately trying to access the newsgroup. Must be a problem with his > laptop (again). I'm sure Mike wanted to be here for Socks. > He could confirm or clarify about the pain medications. I hope Mike > gets whatever problem sorted soon. J, I will tell Socks about Mike. I think I found an email address for Mike on another post. Maybe Socks will feel like helping. Figgertoes > > I'm sorry that Mike Radcliffe isn't here. Tell Socks, Mike's been > > desperately trying to access the newsgroup. Must be a problem with his [quoted text clipped - 4 lines] > I will tell Socks about Mike. I think I found an email address for Mike on > another post. Maybe Socks will feel like helping. Oh gosh, I didn't mean to trouble Socks. I just wanted him to know the reason why Mike's not here. I have 3 email addresses for Mike. So now I don't know which email address you found. Was it one of the test posts? If it's him, that's probably his current email address. I just sent an explanation on how to munge his email in Outlook Expres to all three email addresses, in case that was the problem. The older one @bigpond just bounced. I'm pretty sure that it's our Mike. So I got to thinking that his test posts might have been trying to figure out how to munge, unless it's someone else (family or not related). I sure hope it's not family trying to get here to tell us bad news about Mike. After all is said and done, I'm not 100% sure that it was "our" Mike, but I assume it is. The IP numbers are not exactly the same - ??? New one 220.238.32.208 July post. Old email 220.238.98.239 June post Previous 220.236.83.100 january post With APNIC they all resolve to the same descr: in his country. The last time he had trouble, it was hardware. His keyboard on his laptop and he eventually took it in for repair. I think I see in his headers this time, an anti-virus program (none show in the other 2 posts) X-Antivirus: avast! (VPS 0528-2, 07/12/2005), Outbound message And on another newsgroup, I saw an announcement about a big Microsoft upgrade sometime this week, so this is my long-winded way of saying I don't know if it's hardware or software. He uses Microsft Oulook 6, so I sent him instructions on how to munge with that newsreader. I've never gotten a response from Mike when I've emailed, so don't worry if you don't. If you do and it's Outlook related and more help is needed, let us know, someone on newsgroup may be able to post instructions. If Socks doesn't feel well enough, don't worry about it,please. Thank you and hugs J >> > I'm sorry that Mike Radcliffe isn't here. Tell Socks, Mike's been >> > desperately trying to access the newsgroup. Must be a problem with [quoted text clipped - 48 lines] > Thank you and hugs > J J, The email I found for Mike is @optusnet.com. As it happened, Socks was not able to do anything last night. I'll ask again today, He had thought his time had come. Big pain in lower abdomen. We gave him a suppository from his emergency kit & he felt much better & today the pain is gone. He had thought something might explode. He is stabilizing on the methodone - we're into our 2nd full day; tonight will be 3rd night. Things are settling down following a large explosion on my part yesterday morning. Old equipment provider called about recharging Sock's liquid oxygen. They had never received an order to pick up the machine & wouldn't do so without a doctor's orders. I was furiously calling hospice when Aunt Ruth was suddenly on the phone. Turned out Socks had picked up phone when it rang & handed it to her. But we have settled down & are all getting along fine now. She thinks I am diverting my grief over Sock's impending death to others. I am upset & tired, & that affects the intensity of my reactions to these insults. However, if people would just do what they say they are doing, I wouldn't behave this way. I'm not like this at work or anywhere else. These people are pushing my buttons big time. I will try emailing Mike now so he'll have my email address (if mail goes through). Figgertoes >>> > I'm sorry that Mike Radcliffe isn't here. Tell Socks, Mike's been >>> > desperately trying to access the newsgroup. Must be a problem with [quoted text clipped - 76 lines] > > Figgertoes Fig Don't take any crap from people - no matter who they are, all that matters is your time left with Socks. If these people are palliative professionals they will cut you slack and understand why you are acting this way. You are doning the right thing honey, you will never regret time spent together. My heart goes to you both Sinead me@privacy.net said... > I am upset & tired, & that > affects the intensity of my reactions to these insults. However, if > people would just do what they say they are doing, I wouldn't behave this > way. I'm not like this at work or anywhere else. These people are > pushing my buttons big time. I'm slowly catching up on the situation. {{{{{hugs}}}}} to you both. SignatureIf you can keep your head when all around are losing theirs... then you've failed to grasp some important aspect of the situation. > I am upset & tired, & that > affects the intensity of my reactions to these insults. However, if > people would just do what they say they are doing, I wouldn't behave this > way. I'm not like this at work or anywhere else. I understand. ( ( ( Figgertoes ) ) ) > I will try emailing Mike now so he'll have my email address (if mail goes > through). Thank you, J > Things are settling down following a large explosion on my part yesterday > morning. Old equipment provider called about recharging Sock's liquid [quoted text clipped - 13 lines] > > Figgertoes Fig, if it takes a rocket launcher to get people to pull their finger out then so be it, sometimes a little anst makes people realise the urgency of the situation. You are bound to be upset and tired and the intensity of your emotions may sometimes go a little haywire. I recall a little story when Tony was in the hospice the last time, I must have been a little stressed ;-) some poor young chap knocked on my door to deliver a new garden swing, for some bizarre reason I just took it as more aggravation (even though I had ordered it), having to set it up etc. and it was bought for Tony to use (but he wasn't going to be coming out of hospice); I quite literally burst into tears on the door step and started rambling about cancer and brain tumours. The guy was cool though if a trifle embarassed and offered me a Hug. You're doing well hon. it's not an easy situation to be in and my thoughts are with you both. Warm Hugs Alayne >> Things are settling down following a large explosion on my part >> yesterday morning. Old equipment provider called about recharging [quoted text clipped - 35 lines] > > Alayne Comforting to know this is normal. Sometimes I feel out of control over my rage toward hospice. Then I feel patronized as they think I'm diverting rage over Sock's situation to them. Not true at all! Dealing with hospice is the most stessful part of our 4+ years with cancer. By a lot. They better start following through. They say they will, but I've heard it all before... I know I get a lump in my throat when I do something or go somewhere that Socks will probably never experience again in this lifetime. Fig me@privacy.net said... > I get a lump in my throat when I do something or go somewhere that > Socks will probably never experience again in this lifetime. Stoppit, I hadn't thought of it like that and now I'm trying not to shed a tear. Oh dear, it does bring it home though, doesn't it. {{{{{hugs}}}}} to you both SignatureTo reply see 'from' in headers; lose the domain, and insert dots and @ where common sense dictates. > me@privacy.net said... >> I get a lump in my throat when I do something or go somewhere that [quoted text clipped - 4 lines] > > {{{{{hugs}}}}} to you both Every end of the Demver Broncos' (football) season here, Socks would cry because it would be his last time at Mile Hi Stadium. > > me@privacy.net said... > >> I get a lump in my throat when I do something or go somewhere that [quoted text clipped - 7 lines] > Every end of the Demver Broncos' (football) season here, Socks would cry > because it would be his last time at Mile Hi Stadium. Only a rabid football fan would understand this sentiment..you made me smile. I wish Socks could enjoy another football game with his beloved Broncos. Lots and lots of hugs to you both. Rhonda in Texas (don't hate me because I bleed blue and silver..lol) >> > me@privacy.net said... >> >> I get a lump in my throat when I do something or go somewhere that [quoted text clipped - 13 lines] > > Rhonda in Texas (don't hate me because I bleed blue and silver..lol) Hey, I was a Dallas Cowboys Cheerleader when I was in high school. That was way before Texas Stadium & they used one cheerleader from each local high school. We were pretty pathetic compared to the newer squad. Make that very pathetic! No calendars, no dances, only one uniform. They only paid us $5/game as I recall, but we got a couple of really good tickets to each which came in handy for keeping my father in line! So I grew up with America's Team - what ever happened to THAT? Fig > >> > me@privacy.net said... > >> >> I get a lump in my throat when I do something or go somewhere that [quoted text clipped - 22 lines] > grew up with America's Team - what ever happened to THAT? > Fig Oh my.. you made my morning..lol. Hey, at least you can say, " I used to be a Dallas Cowboy Cheerleader"..lol. Hugs to you and Socks this Monday morning. Rhonda >> >> > me@privacy.net said... >> >> >> I get a lump in my throat when I do something or go somewhere [quoted text clipped - 30 lines] > Monday morning. > Rhonda Yeah, in crazy moments I'd thought of putting it on my resume just to get my foot in the door. However, I'm not sure I'd enjoy the humiliation as they beheld in shocked disbelief my current self! Both you & Socks have my undying admiration. Marty from Oz >>> >> > me@privacy.net said... >>> >> >> I get a lump in my throat when I do something or go somewhere [quoted text clipped - 34 lines] > my foot in the door. However, I'm not sure I'd enjoy the humiliation as > they beheld in shocked disbelief my current self! > Comforting to know this is normal. Sometimes I feel out of control over > my rage toward hospice. Then I feel patronized as they think I'm [quoted text clipped - 6 lines] > Socks will probably never experience again in this lifetime. > Fig The day Rob was operated on for his brain tumor, we were told that it looked like GBM and that Rob would have, at most 6 months to live. That night I got home and received a phone call from the MRI center at Womack Army Medical Center, asking if Rob could come in earlier to get his MRI done. It had been scheduled for over a month as a diagnostic test for Rob's head aches. I KNOW that it wouldn't have made any difference in Rob's tumors, but I couldn't help it. I bitterly told them that Rob was in Cape Fear Medical Center recovering from brain surgery, and didn't need their MRI right now. They told me that they'd take him off the list as a no-show. I hung up and cried my head off. Last year we traveled across the US to visit Rob's family in Idaho and show Rob and the kids where I grew up in Washington State. The whole trip I found myself thinking that Rob will probably not remember the trip, and there are parts of it he doesn't. Even though I know Rob has an unknown time left, I find myself getting those lumps in my throat thinking about the things Rob will probably never experience, like having grand kids. Pam S. >> Comforting to know this is normal. Sometimes I feel out of control >> over my rage toward hospice. Then I feel patronized as they think [quoted text clipped - 28 lines] > > Pam S. Pam, I have similar stories & regrets. In December before Socks went into the hospital to be diagnosed the following May with Stage IV lung cancer with bone mets, he had a complete physical. That did not include a chest Xray. There was no reason he should have had an xray. Healthy male in late 40s, athletic & reasonably fit. But what if he had? Then, in the spring, he came home from karate class complaining of bone pain. Eventually, as this persisted, he scheduled an ultrasound. Unfortunately, Socks scheduled it at a hospital out of our network (typical Socks, blow & go) & I insisted he reschedule in our network, causing a delay of a few days. He never had that ultrasound because plural effusion took him to the hospital in the intervening days. Now I don't for a minute think the few days cost him much or anything. But I do feel guilt anyway. To Socks' credit, he has never brought this up. I'm grateful. Fig > In December before Socks went into the hospital to be diagnosed the > following May with Stage IV lung cancer with bone mets, he had a complete > physical. That did not include a chest Xray. There was no reason he > should have had an xray. Healthy male in late 40s, athletic & reasonably > fit. But what if he had? It's hard to know if they'd have seen anything at all, at that point. It was in his body, but (try to) think of that time as "blissful ignorance". > Then, in the spring, he came home from karate class complaining of bone > pain. Eventually, as this persisted, he scheduled an ultrasound. [quoted text clipped - 5 lines] > do feel guilt anyway. To Socks' credit, he has never brought this up. > I'm grateful. Please wash away that (feeling of) guilt. Many hugs J > > Comforting to know this is normal. Sometimes I feel out of control over > > my rage toward hospice. Then I feel patronized as they think I'm [quoted text clipped - 26 lines] > > Pam S. Pam, As I said to Figgertoes, try very hard not to think of what will never be. I feel truly sad that Tony will never see any grandkids or even watch his girls grow into beautiful young ladies (hopefully); he'll never be there to fend off the unsuitable boyfriends either ;-) but what I am thankful for is spending 20 years of my life with him. I remember when he had a CT scan when his mask was made, and sitting in the waiting room when a little boy, no more than 5/6 also entered the room, also carrying his mask, compared with Tony, he had such little time. Warm Hugs Alayne > I feel truly sad that Tony will never see any grandkids or even watch his > girls grow into beautiful young ladies (hopefully); he'll never be there to [quoted text clipped - 3 lines] > no more than 5/6 also entered the room, also carrying his mask, compared > with Tony, he had such little time. Perspective; a child with a brain tumor. I was just reading on the BCCA website that their youngest NSCLC cancer patient was 17 years old. You and Tony crammed a lof of living in the time you had together. Many hugs, Alayne, J > > I feel truly sad that Tony will never see any grandkids or even watch his > > girls grow into beautiful young ladies (hopefully); he'll never be there to [quoted text clipped - 11 lines] > Many hugs, Alayne, > J Yes, and it's the good memories that a person will always cherish. It's a personal outlook on life, but I always think that when I have been dealt a poor hand, there are many others with far worse. Warm Hugs back at ya Petal Alayne > >> Things are settling down following a large explosion on my part > >> yesterday morning. Old equipment provider called about recharging [quoted text clipped - 46 lines] > Socks will probably never experience again in this lifetime. > Fig Fig it really is normal and don't beat yourself up about it. You simply want to do what is right by Socks and get frustrated by others. You are probably also exhausted and highly (if unknowingly) stressed. A little rage can be therapeutic and good for the soul. Try not to think of the tommorrows (and I got a lump in my throat reading your post too), Socks will be with you forever, in your heart and in your soul. Warm Hugs to you both Alayne > > > "Figgertoes" <me@privacy.net> wrote in message > [quoted text clipped - 7 lines] > your post too), Socks will be with you forever, in your heart and in your > soul. So true...I've been crying (on and off/roller-coaster) for Socks for almost a year now. I'm at peace about Mom (lung cancer). She was so sick and in pain; now I can remember the better times. The older memories come flooding in and I can smile when I remember her. Even Dad, on his better days, he could use a walker and he hitched up a collection bag to it, and headed down to the ocean beach and cleaned up bottles and cans and vented (by letter to me) that it wasn't "like the good old days, nobody respects the beach nowadays". Ha! We never told him about the beer bottles we'd find when we were swimming in the river back home. We cleaned them up. What he didn't know, wouldn't hurt him. If he'd known others were drinking on that beach, he might not have let us kids hang out there. ;-) Ah, the memories... J >>>>> No junkies here. >>>> [quoted text clipped - 125 lines] > Love from > Figgertoes (((((((Fig and Socks)))))) > At the same time, they want to bring food from a food bank! Why? We eat > almost all fresh foods, lots of organic. These are pantry items. I'd > prefer the food bank supply the hungry. We should not be entitled to > this. The food bank is a way for people who don't know any cancer patients to help some. The fact that you're self-sufficient without the contributions makes it nice that you leave the goodies for others, but doesn't take away from the goodheartedness of the donators. Now, if there were only a co-pay bank... :) :) :) SignatureIf John McCain gets the 2008 Republican Presidential nomination, my vote for President will be a write-in for Jiang Zemin. >> At the same time, they want to bring food from a food bank! Why? We >> eat almost all fresh foods, lots of organic. These are pantry items. [quoted text clipped - 7 lines] > > Now, if there were only a co-pay bank... :) :) :) Clifto, There is a central foodbank here - Food Bank of the Rockies that serves many different groups of people. Grocery stores & manufacturers primarily contribute. Hospice is authorized to 'shop' there. I spent an afternoon sorting food a this food bank a couple of years ago as a community service project through my employer. I got a first-hand look at the operation. Many, many volunteers, many regular. All of that largesse should benefit those truly in need. I think the point I tried to make was that hospice should concentrate on relieving Socks' pain. They weren't doing that, but they WERE wanting to bring us food. Fig > Socks has lost the will to live, but maybe he'll rally once the pain > control is steady. Socks, old bean, enjoy every pain-free moment and most of the tolerable ones to the hilt. Just because the outlook doesn't look delightful doesn't mean you should give up. Remember, any of us could get hit by a beer truck in ten minutes and lose it all; and the way some beer trucks drive, that doesn't mean you have much better odds the latter way. :) SignatureIf John McCain gets the 2008 Republican Presidential nomination, my vote for President will be a write-in for Jiang Zemin. >Sorry for the ramble. I need sleep & am off to get some. You are really going through the mill yourself now Figgertoes and reading about the stress you are under is as harrowing as reading about Socks. Aunt Ruth was to put everything to rights with the system and not with you:-( Judy and I are thinking about you and Socks all the time. I believe that Socks is now being forced by the system to stop fighting. I am not knowledgable about cancer but I have seen the hospice system in my country and often they are not helpful when a patient is as strong willed as you and Socks are and they have a whip hand if they control Socks access to pain killers. We all have been told by Socks that he is dying and many of us (me included) have willed him on to fight and live but once your wonderful man has accepted his is going to die he has in effect given up the unwinable fight and the hospice want him inside their institution where they can regulate his dying rather than helping him to live. This is my personal opinion only and I can assure you that no one wanted to see Socks live more than I did. My Judy has cancer too and I wouldn't want her to go through what Socks is going through now in his brave but futile struggle. You know the eventual outcome is inevitable now and you have to think about yourself as well as your wonderful Socks. pete turtill@hotmail.com wrote:[..] > pete Must be forgery <nudge, nudge, wink, wink> because I could swear he understood that posting here will bring the trolls and cause other posters to not want to post here. J >turtill@hotmail.com wrote:[..] > [quoted text clipped - 3 lines] >understood that posting here will bring the trolls and cause other posters >to not want to post here. FFS if people stop posting because of trolls then the trolls win. Learn to ignore them and help others to do the same.This is Usenet and trolls are part of the furniture as are novices who need to be shown how to use their boxes correctly and read headers. I left it a while as I got a troll disconnected and now I post as and when I feel like it. If you do not understand human nature and trolls I will gladly set up a private Yahoo group for you where you can censor each post yourself. It would take me about 5 minutes to set up and you could then continue to post without having any regard for Usenet protocols. Just tell me what you want it called. pete There go the lies again. Peter my friend who did you get disconnected, please tell us all because as everyone knows that is simply more of your lies and fabrications. you CANNOT get anyone disconnected as it is YOU who is the biggest troll and newsgroup abuser around. So lets hear it, who's account did you 'supposedly' get disconnected ?. So here you are then back to your normal tricks telling people you will post as and when you feel like it, despite telling people you would not post here again. You see Peter my friend, you are a pathalogical liar who just cannot stop telling lies and fabricating lies about people, such is your sad lonely little life. For anyone who hasnt read Peter Turtill of Beatty Rd Ipswich other rants and bullshit on the disability group he threatened that if someone didnt come clean and admit all his sockpuppets then the lonely sad and smelly Mr Turtill would have their account closed. He has the temerity to post this when he has so many sockpuppets and anonymous account he quite often makes mistakes and messes up putting his real name on them rather than his sockpuppets. Again Mr Liar Peter Turtill, tell us all who's account you supposedly got closed or shut up and go away, as people are fed up with you, and your lies and bullshit. God bless you. >>turtill@hotmail.com wrote:[..] >> [quoted text clipped - 15 lines] > Just tell me what you want it called. > pete >>turtill@hotmail.com wrote:[..] >> [quoted text clipped - 5 lines] > >FFS if people stop posting because of trolls then the trolls win. That's exactly why you will never stop me posting, you will not win. >Learn to ignore them and help others to do the same. Do as I say not as I do, eh peter dear. >This is Usenet and trolls are part of the furniture as are novices who need to >be shown >how to use their boxes correctly and read headers. Don't even try to profess that you are not a novice who knows how to use any box, you make so many mistakes with your socks, it's laughable and as for headers, you have only just started to understand them, but you make such bizarre leaps of turtill logic that you almost always get it wrong and the evidence you produce is one of the things that make you a laughing stock. >I left it a while as I got a troll disconnected You got nobody disconnected, LOL, you are a serial dreamer. >and now I post as and when I feel like it. You always have, even when you state that you will not post again, that's the way trolls work. >If you do not understand human nature and trolls I think everyone understand your nature and that you are a troll. >I will gladly set up a private Yahoo group for you where you can censor each >post >yourself. There is not much need to censor your posts, you will be in the majority of kill-files, although not mine, peter dear. >It would take me about 5 minutes to set up and you could then continue to post >without >having any regard for Usenet protocols. >Just tell me what you want it called. How about Malignant Turtill >pete We are supposed to be at the coast on Friday's dear, have you forgotten, ooops SignatureMrs.Smicker-Abacha >turtill@hotmail.com wrote:[..] > [quoted text clipped - 4 lines] >to not want to post here. >J It's typical turtill, he says one think then does another, he will always try to justify his lies. SignatureMrs.Smicker-Abacha Now why are you not having your fish n chips at the coast, ooops have you forgot it's Friday, dear and we are supposed to be at the coast, just make sure you stop posting for a few hours to make it look like you've been, or you could always pretend that posts from you were forgeries as you were at the coast. LOL SignatureMrs.Smicker-Abacha > I hope I never see or talk to any > of them ever again. I feel constantly betrayed by them. I'm so sorry, so very sorry, Figgertoes (and Socks). This is supposed to be quality time for you and Charles (not having to battle the very same people who were supposed to smooth the way). Thanks for explaining. I won't keep you. Will watch for your updates. Many hugs J > > I hope I never see or talk to any > > of them ever again. I feel constantly betrayed by them. > > I'm so sorry, so very sorry, Figgertoes (and Socks). Oh dear, I've missed something, haven't I. My computer's been out of action for a couple of days and I've had to more or less start from scratch, including having to set up my newsreader all over again. Have some {{{{{hugs}}}}} while I try to catch up on what's been going on. SignatureTo reply see 'from' in headers; lose the domain, and insert dots and @ where common sense dictates. >> "Sinead" <Sinead@invalid.anon> wrote in >> [quoted text clipped - 33 lines] > > Sinead They overnight mail the meds to the house. I could also pick up the emergency stuff, but it's a 1.5 hr. round trip. We don't go thru local pharmacies, just the hospice one. Fig "Figgertoes" <me@privacy.net> wrote in message >>> Hospice was also supposed to arrange the pick-up of our equipment >>> from another supplier - concentrator, liquid oxygen tank, 2 portable [quoted text clipped - 5 lines] >>> stressful >>> events. Hi Fingertoes, Call the oxygen people yourself and have them pick it up. That's what I did. Hospice tried tocall the other supplier on a Friday but could not reach them so I called the company on Saturday. They picked it up on Monday. My dad only used it for one day until Hospice came in. Then he got a bill from the other company. I called them and they erase the co-pay since they saw that Hospice came in and he only used the oxygen machine for one day. Hope that helps. Sometimes you just have to be aggressive but nice. > "Figgertoes" <me@privacy.net> wrote in message > >>> Hospice was also supposed to arrange the pick-up of our equipment [quoted text clipped - 11 lines] > the other company. I called them and they erase the co-pay since they saw > that Hospice came in and he only used the oxygen machine for one day. Who paid the rest of the bill? > Hope > that helps. Sometimes you just have to be aggressive but nice. Hospice let them down. Hospice was supposed to arrange...(ie don't make promises they're not prepared or able to keep). Professional people don't say "I don't know why". They say " I don't know why, but this will be rectified, including the copay, ASAP for you" (and then get it done) Hospice is supposed to smooth the way.. J > I am grateful for this info. Hospice is simply not supplying the quantity > he needs. The emergency, middle-of-the-night delivery last night was 20 [quoted text clipped - 18 lines] > receives? Ours are normally sent via overnight mail except for the > emergencies for which we pay $10 day, $30 night & $50 weekend. Ouch! Sounds like two ripoffs to me. I'm appalled and disgusted. J >> I am grateful for this info. Hospice is simply not supplying the >> quantity [quoted text clipped - 24 lines] > Sounds like two ripoffs to me. I'm appalled and disgusted. > J Me too. It brings back all the bad memories of when my aunt was clearly dying (not from cancer) in the hospital, & they wouldn't bring her pain meds on time -- if she asked "too soon" they said "you have to wait" -- but if she waited until the right time to ask they took another 20-30 mins to bring them. At least she got one of those button-pusher-infusion things for her last 24 hrs or so, but it took some really strong talking from her daughter to her doctor. I think we need voodoo dolls to aim at people who don't respond adequately to the needs of patients in pain. I'd be happy to help stick pins in them. (Does anyone watch "Charmed"? maybe the Book of Shadows has some incantations or potions we can use.) bj > Me too. > It brings back all the bad memories of when my aunt was clearly dying (not [quoted text clipped - 4 lines] > or so, but it took some really strong talking from her daughter to her > doctor. Darned shame. I do understand that sometimes they are busy elsewhere. On the other hand, I've seen them talking (3 or 4 of them at the nursing station) and one or the other looks up to hear and see a buzzer and say "oh that's XXX and he/she just needs XXXX..it can wait" and me wondering well, what if it isn't XXXX and it's YYY, something more urgent). That was hospital, big city nearby. On the other hand, in Toronto the nursing staff were wonderful. They were right on top of things. So I expect it varies. J > Does anyone know how many days of worth of drugs a patient normally > receives? Ours are normally sent via overnight mail except for the > emergencies for which we pay $10 day, $30 night & $50 weekend. Ouch! In the UK it depends on the drug. An antibiotic, for example, will tend to be a week's supply, because that's the usual length of the course. An antihistamine supplied by the doctor to combat allergies and hayfever will normally be supplied in monthly or 28 day quantities as it's more of a long term thing. I'm not sure about how we deal with the sort of thing Socks is using - Alayne? Can you shed any light on this? SignatureI try to be a good example to my children, but they just see me as a dire warning. > > Does anyone know how many days of worth of drugs a patient normally > > receives? Ours are normally sent via overnight mail except for the [quoted text clipped - 7 lines] > with the sort of thing Socks is using - Alayne? Can you shed any > light on this? Actually I could tell you a little bizarre story Em about morphine. On hols in a log cabin June 03, Tony gets bad head that nothing will shift. I call in local dr from camp site (we are in Dorset at the time). Dr ever such nice lady (also has hospice experience) comes out, wants to admit Tony, I say no, get nausea under control, if do that then pain meds will stay down. Anyways long story short, she literally wrote prescription for morphine and then escorted me and girls into Dorchester, into pharmacy to make sure I got the stuff okay (didn't escort me back mind, and I got lost). Was given a whole bottle no qualms. Job done. On next bad head day back here, I phone local GP, he literally tells me to spoon feed the morphine (I am flabbergasted cos I was under the impression this was pretty mean stuff); 20 mins later no affect, phones again, told same thing. 20 mins later phones again, gets shitty, dr finally comes out and administers diamorphine injection, job done. I was really amazed at the slack attitude of our local GP expecting me to administer morphine. I have a bit of a pop at having to be the only one to take Tony's pain seriously, which is when syringe driver was brought into play. Little moral here for you Fig. don't let them make you do anything that you feel out of your depth to do, you are in a difficult situation and your shoulders are only so wide. Warm Hugs Alayne > [...] > If I weren't so exhausted & still needing to ready Aunt Ruth's bedroom, I'd > write out my blessings. Isn't it amazing how many more we have on a daily > basis than we consciously realize? > > Any you, my cyber faithful friends, are at the top of the list. And you and Charles, ours. > Sweet dreams, sweet socks. May you sleep through the night & feel better > in the morning. I hope he did sleep through the night and does (feel better this morning). You too Figgertoes. Hugs J >> write out my blessings. Isn't it amazing how many more we have on a >> daily basis than we consciously realize? [quoted text clipped - 10 lines] > Hugs > J J, He & Teddy slept pretty well. He always feels much better in the morning. So I leave him smiling & come home to OTT pain. Aunt Ruth will help with this. Socks is reluctant to call hospice in the evening, but I have no such compunctions if the pain is increasing. They need to work things out during the day. I think now they will. Problem is that Socks is rather stoic about pain & has a high threshhold. Also tends to understate (hard to believe, but true). That makes it hard for them to properly assess his level. I'm ready for hibernation, but I don't think the season is right... Hugs back to you! Fig > Socks is reluctant to call hospice in the evening, but I have no > such compunctions if the pain is increasing. Socks, the reason they hire night hospice people is so that you can call them at night! Idle minds are the devil's workshop; save your hospice people from that fate. SignatureIf John McCain gets the 2008 Republican Presidential nomination, my vote for President will be a write-in for Jiang Zemin. > Socks, the reason they hire night hospice people is so that you can call > them at night! Idle minds are the devil's workshop; save your hospice > people from that fate. That reminds me of an old washer/drier repair guy advert. The point was to imply that they never broke down; and the repair guy was oh so lonely and bored, waiting for the phone to ring. ;-) J >> Socks, the reason they hire night hospice people is so that you can >> call them at night! Idle minds are the devil's workshop; save your [quoted text clipped - 4 lines] > was oh so lonely and bored, waiting for the phone to ring. ;-) > J Maytag >>> Socks, the reason they hire night hospice people is so that you can >>> call them at night! Idle minds are the devil's workshop; save your [quoted text clipped - 6 lines] >> > Maytag Yeah, & when my Maytag needed a repair (which turned out to be a warranty issue, on a model with "priority service"!) it took over 2 weeks just to get the guy in the door -- then another few days to get the part & come back! bj >> Socks is reluctant to call hospice in the evening, but I have no >> such compunctions if the pain is increasing. > > Socks, the reason they hire night hospice people is so that you can call > them at night! Idle minds are the devil's workshop; save your hospice > people from that fate. Thanks. It was the right thing to do. > Socks is reluctant to call hospice in the evening, but I have no > such compunctions if the pain is increasing. Socks, here's a little hint: it's what they're /for/. SignatureI try to be a good example to my children, but they just see me as a dire warning. > > Socks is reluctant to call hospice in the evening, but I have no > > such compunctions if the pain is increasing. > > > Socks, here's a little hint: it's what they're /for/. I wonder if it is Socks way of not wishing to admit defeat. Tony was adamant that there was no need for Macmillan/Marie Curie nurses to come and lend a hand, in his opinion we were coping perfectly (but then he wasn't the one doing the caring). In some situations love simply isn't enough. Warm Hugs Alayne > One of the 'pillows' I found was a soft teddy bear. A > bear for un-bear-able pain? Seems to work. Anything soothing. Remember, one of my breakthroughs was a hypnosuggestion of walking along a quiet beach and picking up a conch shell; when I got to radiation and they handed me my little rubber hands-holder-onner thing, that became my conch shell and eased me greatly. Try getting him to relax as much as possible and telling him a nice story from your past in detail. Relive some nice vacation. Maybe he can mentally translate hugging the bear into hugging a beloved child some time back, or a pet. When I used to do self-hypnosis I sought out this large, leafy fruit tree that was in the middle of a vast field of nothing but green grass, and just sit against it in the shade and enjoy the beauty. SignatureIf John McCain gets the 2008 Republican Presidential nomination, my vote for President will be a write-in for Jiang Zemin. > Anything soothing. Remember, one of my breakthroughs was a hypnosuggestion > of walking along a quiet beach and picking up a conch shell; when I got [quoted text clipped - 3 lines] > that was in the middle of a vast field of nothing but green grass, and > just sit against it in the shade and enjoy the beauty. I'm glad that worked for you for the panicky feeling, J |
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