 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Cancer / November 2004Pregabalin / Lyrica - anyone tried it?
Checking in... desperate as usual. What seems like aeons ago I posted about SIADH, with which the man I love was struggling. He managed to swallow - and retain - enough of the evil demeclocycline to get past that episode. But he's suffered from nausea/vomiting from the start, and nothing held it back. His appetite suffered, he lost weight and started to slip downhill. A few months ago he was given levomepromazine - can't remember the alternative names, just 6.25mg at night. That stopped the nausea, gave him a good night's rest but left him confused for 12 hours at a stretch. September last he had a fit - and I nearly did, because I didn't know what was going on. I had him rushed to the local general hospital and regretted it instantly and at length. He had a miserable time there and was given a brain scan - 'at least 2 cranial lesions', they said. Sodium valproate and dexamethasone seemed to be holding it at bay, but not the pain he's had for years. After much trial and error and progression, he's now using 300 mcg/hour Fentanyl patches, changed after 48 hours, with oxycodone [oxynorm] 4-5 x 20mg every 4 hours. Still it isn't enough. We stopped the levomepromazine and the nausea didn't come back. I admit we occasionally used a <cough> alternative remedy which worked best of all. The palliative care expert prescribed Pregabalin [UK tradename Lyrica - Pfizer], the latest greatest Neurontin alternative. The plan was that it'd hold further fits at bay and help with any neuropathic pain. He took one pill last Tuesday night, then 2 daily till Friday night. From the start he became drowsy and said he felt drunk. His walk reflected this. We'd checked the insert - and the net - and it did mention oxycodone intensifying this problem, but given his opioid tolerance and the doc's confidence we let it go. The pain receded, and he was able to cut his oxy by one pill per dose. The signs were promising. The pain guy had warned us sedation and dizziness, and said it'd pass in a few days. It didn't. He got progressively worse until on Saturday morning I couldn't wake him for more than seconds at a time. I didn't give him any more Pregabalin. I tried for 4 hours to rouse him, trying not to let my panic show. He's in general hospital again now. His blood calcium and sodium are OK, vitals all as good as expected, not anaemic. But still I can't rouse him for any length of time. He's lucid enough when he does wake. A nurse told me a relative of hers had stopped these pills because of sedation. But I'm concerned it may be something more sinister. He's transferring to hospice tomorrow in any case. Meantime, the hospital has cut off his oxycodone. I'm afraid he'll start to howl in pain but he'd have to wake up to do that. I'll put on his new patches tonight; it may give him a boost. Does anyone else have experience of this medication, or any other input, please? I'm so scared. Mysty [partner diagnosed SCLC, Sept '02; cisplatin/etoposide x6, 'complete response', recurrence late '03; carboplatin/etoposide x4, 'good' response; recurrence mid-'04, vincristine/adriamycin/doxirubicin x4 'see how it goes'] > Checking in... desperate as usual. What seems like aeons ago I posted about > SIADH, with which the man I love was struggling. He managed to swallow - [quoted text clipped - 59 lines] > response', recurrence late '03; carboplatin/etoposide x4, 'good' response; > recurrence mid-'04, vincristine/adriamycin/doxirubicin x4 'see how it goes'] Hello Mysty, Whoa, it sounds like you are pretty stressed here, deep breath for a minute and a Hug. It sounds like you have had a bit of a time of it of late. I am afraid that I can't input any medical information having no background in that direction. But I can offer you some optimism that when hubby gets in to hospice tommorrow I am sure that they will be able to assess the situation and make him more comfortable. I struggled "home alone" for a while with my hubby (he had a GBM4 brain tumour) but was so relieved when he went into the hospice first time. Before he went in he was taking all sorts of medications, after a few days and a bit of tweak they got his meds down to a more acceptable level and he was an awful lot better for it. See what they have to say tommorrow but try and de-stress yourself for now. It's tough caring but you are doing well. Hugs Alayne Thanks, dear Alayne! I hoped you'd respond, but then I *knew* you would. I've lurked here for years. I didn't dare post much because he often used my computer... till very recently. >> [snip - Checking in... desperate as usual. ] > Whoa, it sounds like you are pretty stressed here, deep breath for a > minute and a Hug. It sounds like you have had a bit of a time of it > of late. Hug received with *enormous* gratitude. I've hardly ever let my composure crack... well, OK, a bit of surreptitious crying in the car; the only alone-time I could get. Till tonight, when I couldn't face the man I love because I couldn't let him see me tearful. A *doctor* made me tea. That's an accomplishment! > I am afraid that I can't input any medical information > having no background in that direction. But I can offer you some [quoted text clipped - 6 lines] > down to a more acceptable level and he was an awful lot better for > it. Yes, that's what I'm hoping. My medical background is a year as a med sec [yeah, like you I can type like hellfire!] but *his* is considerably more extensive, having practised medicine all his life. Until a couple of days ago we could always talk things out together. I could even counteract his scientific fatalism with a good dollop of witchy new-age claptrap, occasionally made up on the spot. But now I can't get through to him, I can't second-guess him and humour is useless. I can't even persuade him to get back into bed. :( I had to ask a nurse to give him his pills rather than break down in front of him. Which does mean he's rather more sentient than he was yesterday. Baby steps, perhaps? Maybe he'll be better still tomorrow. There's still a reservoir of optimism. I know hospice is the best place for him right now. Hell, I miss him enough already. Tomorrow night I won't be worrying so much about infectious ward-mates, hard beds and busy nurses forgetting him. They promised him a better bed yesterday - he's at great risk of bedsores but we managed to avoid them. It hadn't arrived at 10:30 tonight. :( > See what they have to say tommorrow but try and de-stress yourself > for now. It's tough caring but you are doing well. Yes, on Friday I spoke with both our kindly, helpful GP and our Macmillan nurse. Both said 'he's so lucky to have you'. They have no idea how lucky I was to have him, ill or otherwise. I know they were trying to prepare me for the worst, though neither had seen him in a couple of weeks. My plans for the night include talking to a close friend on IRC [tried voice, couldn't handle it], then crying till I can't cry any more. After that I should sleep. Early start tomorrow, to make sure the transfer goes smoothly. Just spoken with his grown-up son - long story but we only met a couple of weeks ago - he's come from far away to be near his dad. He'll be able to meet me tomorrow and ride in the ambulance so there'll be a familiar face on hand, and I can follow by car. > Hugs Back atcha, you wonderful woman. You inspire me. Love and joy xx  SignatureMysty > Thanks, dear Alayne! > I hoped you'd respond, but then I *knew* you would. I've lurked here for > years. I didn't dare post much because he often used my computer... till > very recently. I know that feeling! But you can come out of the woodwork now Mysty and we are all here for you. > > Whoa, it sounds like you are pretty stressed here, deep breath for a > > minute and a Hug. It sounds like you have had a bit of a time of it [quoted text clipped - 3 lines] > crack... well, OK, a bit of surreptitious crying in the car; the only > alone-time I could get. Yes been there, you probably feel that if you let your guard down the tears will never stop. But it is good to cry Mysty, it does relieve some of the stress that you are under and you might find that they bubble away under the surface and explode when you are least expecting it. I remember (and I can smile at it now) but I was very "together" and then one day a man tried to deliver something that I had ordered that would need putting together, Tony had just gone into hospice the second time, I just completely lost it and started blubbing at the poor bloke and wailing that my husband had a brain tumour. Poor man didn't know what to say - but he did offer me a Hug ;-) > Till tonight, when I couldn't face the man I love because I couldn't let him > see me tearful. A *doctor* made me tea. That's an accomplishment! I do feel for your Mysty, it's a terrible experience for people to go through and I think particularly so when it is with the one person that means so much to you. > > I am afraid that I can't input any medical information > > having no background in that direction. But I can offer you some [quoted text clipped - 13 lines] > scientific fatalism with a good dollop of witchy new-age claptrap, > occasionally made up on the spot. Loss of communication is really tough. Tony was like a part of me and like you guys we used to talk through everything. It was very difficult to handle when the one person that I needed support from was the person that was suffering so. > But now I can't get through to him, I can't second-guess him and humour is > useless. I can't even persuade him to get back into bed. :( I had to ask a [quoted text clipped - 4 lines] > Maybe he'll be better still tomorrow. There's still a reservoir of > optimism. I know hospice is the best place for him right now. You never know, see what happens today. When Tony was admitted second time, he was sedated heavily because they couldn't control his pain and I was told virtually that that was it. I went round told all the family the news, then blow me two days later he was up in bed eating his breakfast! > Hell, I miss him enough already. Tomorrow night I won't be worrying so much > about infectious ward-mates, hard beds and busy nurses forgetting him. They > promised him a better bed yesterday - he's at great risk of bedsores but we > managed to avoid them. It hadn't arrived at 10:30 tonight. :( Hospice is certainly the best place for him. Staff are generally okay in the hospitals, but they are pure angels in hospice. > > See what they have to say tommorrow but try and de-stress yourself > > for now. It's tough caring but you are doing well. [quoted text clipped - 8 lines] > that I should sleep. Early start tomorrow, to make sure the transfer goes > smoothly. Be kind to yourself Mysty. When things are sorted in hospice, take a break for a couple of hours at home, have a warm bath and perhaps catch up on some of that missed sleep. You are probably simply running on adrenalin right now, which we all have a lot of, but it will catch up with you. > Just spoken with his grown-up son - long story but we only met a couple of > weeks ago - he's come from far away to be near his dad. He'll be able to > meet me tomorrow and ride in the ambulance so there'll be a familiar face on > hand, and I can follow by car. That's good, he can offer you some moral support too. > > Hugs > > Back atcha, you wonderful woman. You inspire me. Naa, not really, just someone who has been through it and perhaps tinged with a little guilt that I couldn't do more ;-) > Love and joy > xx Hope all goes well today with the transfer and fingers crossed that he rallies in a couple of days. Hugs Mysty Alayne >> [I didn't dare post much... till very recently.] >> > I know that feeling! But you can come out of the woodwork now Mysty > and we are all here for you. Looks like I'm going to need you. The news wasn't what we wanted to hear. Turns out the general hospital interpreted the blood results by different criteria. :( SIADH - or adrenal gland involvement - no matter - has reappeared. He's too weak to stand the treatment, if it's the former. If it's the latter, there isn't one given his other problems. >> [I've hardly ever let my composure crack] > Yes been there, you probably feel that if you let your guard down the > tears will never stop. But it is good to cry Mysty, it does relieve > some of the stress that you are under and you might find that they > bubble away under the surface and explode when you are least > expecting it. I've cried a bit today. But not in front of my love. In the car with his son coming home we both blubbed. Another new experience is coming - his mother, my darling's ex-wife ,wants to come here ASAP. She was afraid I'd block it, silly woman. *He* loved her for many years, so she's very welcome. > I remember (and I can smile at it now) but I was very > "together" and then one day a man tried to deliver something that I [quoted text clipped - 3 lines] > tumour. Poor man didn't know what to say - but he did offer me a Hug > ;-) Hugs are good when the words won't come. And I'm sure I'll be telling the whole world. I just sent several angsty text messages including one to my boss 'don't expect to see me anytime soon'. There are so many things around the house that remind me of him. Lots of jobs he was eager to do but too unwell to manage. He had started to tell me how to do them all. It might be good therapy, but I don't fancy crawling under the floor. > I do feel for your Mysty, it's a terrible experience for people to go > through and I think particularly so when it is with the one person > that means so much to you. I kissed a lot of frogs before I found my prince. I was 46 when we first made contact. We had a little over 2 years. There's nothing else left in my life now. But I don't want to bury him yet. When he first came to me, he said 'my love, I'm dying'. Sternly I reminded him, 'no, you're *living*'. >> [we could always talk things out together] > > Loss of communication is really tough. Tony was like a part of me > and like you guys we used to talk through everything. It was very > difficult to handle when the one person that I needed support from > was the person that was suffering so. We were twin souls. We never fought, though we argued lots and sometimes changed each other's opinions. I'm trying constantly to ask myself what he'd say to me. 'Take care of yourself' would be his top priority. He always wanted to look after me. His being scientific and me mystical could be comical. A wee while ago he told me that if my belief in reincarnation was true he'd find a way back to me. I'll be looking out for a stray cat to add to our collection. >> Maybe he'll be better still tomorrow. There's still a reservoir of >> optimism. I know hospice is the best place for him right now. [quoted text clipped - 4 lines] > all the family the news, then blow me two days later he was up in bed > eating his breakfast! I so hope something similar happens to my love, but I fear it may not. The doctors were very grave. I don't like that. >> [hard beds and busy nurses forgetting him]( >> > Hospice is certainly the best place for him. Staff are generally > okay in the hospitals, but they are pure angels in hospice. He has a good bed, at least, now. I'm on my way back to him as soon as I send this post. He's alone in a 4-bedded ward and I'd like to comfort him if that's possible. > Be kind to yourself Mysty. When things are sorted in hospice, take a > break for a couple of hours at home, have a warm bath and perhaps > catch up on some of that missed sleep. You are probably simply > running on adrenalin right now, which we all have a lot of, but it > will catch up with you. I can't be running on anything else. On the plus side I've lost a little of the weight I gained while he was cooking for me. He insisted that, as I worked, he'd deal with food. He actually enjoyed cooking. He made me my dinner on Thursday last and I'd drive home from work each lunchtime to a hot lunch. I was pampered and I knew it. What a man! I'll rest later, after I've been back to see him. I had to get home to absorb the news and recover a little composure. >> [his grown-up son] > That's good, he can offer you some moral support too. We've made a deal. We'll both try to support each other and that means us both bucking up a bit. He's a good guy, but then he would be, wouldn't he? His dad was one of the world's finest and the only one for me. >> [You inspire me] >> > Naa, not really, just someone who has been through it and perhaps > tinged with a little guilt that I couldn't do more ;-) Perhaps one day I'll be strong enough to do the same. I'm going through all that 'could I have done more' angst right now, but managing to rationalise it. > Hope all goes well today with the transfer and fingers crossed that he > rallies in a couple of days. I won't give up hope till it's taken from me. And I'll always feel his love. Love and courage, xx Mysty > Hello Alayne love, > Looks like I'm going to need you. The news wasn't what we wanted to hear. > Turns out the general hospital interpreted the blood results by different > criteria. :( Okay, tough news, but we are here for you Mysty no matter how rocky the path. > SIADH - or adrenal gland involvement - no matter - has reappeared. He's too > weak to stand the treatment, if it's the former. If it's the latter, there > isn't one given his other problems. Time will tell, he is in the best possible hands now and they will do their utmost for him. > >> [I've hardly ever let my composure crack] > [quoted text clipped - 9 lines] > block it, silly woman. *He* loved her for many years, so she's very > welcome. It is good to cry, I know that you feel that there is a time and a place. I still do it occasionally even now, although it doesn't feel right in front of the girls, and it still doesn't feel right without big strong comforting arms either. :-( > > I remember (and I can smile at it now) but I was very > > "together" and then one day a man tried to deliver something that I [quoted text clipped - 7 lines] > whole world. I just sent several angsty text messages including one to my > boss 'don't expect to see me anytime soon'. Hugs are the best, sometimes words are so futile. There's nothing that anyone can say that will take away the pain but a simple hug makes you feel that someone still cares. Hey angsty, is part of the process too!! At some point you will scream at the whole world and with a little understanding no-one here minds. I'm quite a passive person by nature but one day I got held up by roadworks just a few hundred yards from the hospice, I waited and waited for what seemed like ages, then I got to the front and had to wait even more; I then sat for a bit and watched the workmen have a smoke and a bit of a chat; and then I simply went ballistic, flew out of my car and had a "few choice words" (poor guy, didn't know what to say); but it was sure good therapy! > There are so many things around the house that remind me of him. Lots of > jobs he was eager to do but too unwell to manage. He had started to tell me > how to do them all. It might be good therapy, but I don't fancy crawling > under the floor. Life is a learning process. I too was left with a house unfinished but gradually over time I have managed the smaller things (okay so not brilliantly ;-) and those that I couldn't do, someone else knew how. It is amazing how much you can do when left to your own devices. My cat flap fell apart today, major calamity to begin with as it left a gaping hole; off I traipse for a new one and screwdriver in hand (I was so never allowed to use one before!); job done, and better still, I didn't have to wait several months either ;-) It all takes time Mysty and house stuff just isn't a priority any more. It makes for a good therapeutic distraction at a later stage. > > I do feel for your Mysty, it's a terrible experience for people to go > > through and I think particularly so when it is with the one person [quoted text clipped - 3 lines] > made contact. We had a little over 2 years. There's nothing else left in > my life now. It may seem like that right now but smiles do eventually return. Tony was really my first proper fella and we were together for 20 years, he has indeed left a huge void but nothing can be done about that. I decided when I lost him that I wasn't going to let cancer take two lives. Some days I really curse him too ;-) particularly when faced with something that at first I think I can't cope with, or the girls are playing up. > But I don't want to bury him yet. When he first came to me, he said 'my > love, I'm dying'. Sternly I reminded him, 'no, you're *living*'. You haven't lost him yet Mysty. And should there come a day when you do, you won't lose him completely, he will be there in your mind and in your heart lurking away in your memories. > >> [we could always talk things out together] > > [quoted text clipped - 8 lines] > I'm trying constantly to ask myself what he'd say to me. 'Take care of > yourself' would be his top priority. He always wanted to look after me. Yep, he would hate to see you so sad (although understandably so), he would want you to make the most of the life that you do have and to remember him when he was fit and well and the good times you were blessed with. > His being scientific and me mystical could be comical. A wee while ago he > told me that if my belief in reincarnation was true he'd find a way back to [quoted text clipped - 11 lines] > I so hope something similar happens to my love, but I fear it may not. The > doctors were very grave. I don't like that. The show ain't over til the fat lady sings Mysty. > >> [hard beds and busy nurses forgetting him]( > >> [quoted text clipped - 4 lines] > send this post. He's alone in a 4-bedded ward and I'd like to comfort him > if that's possible. Being there is comforting alone, comforting for you too. > > Be kind to yourself Mysty. When things are sorted in hospice, take a > > break for a couple of hours at home, have a warm bath and perhaps [quoted text clipped - 7 lines] > dinner on Thursday last and I'd drive home from work each lunchtime to a hot > lunch. I was pampered and I knew it. What a man! I lost loads of weight too with all the running around, but it is very important that you take time to eat. Not necessarily a full blown meal (although occasionally that would be good), I took a liking to a simple bowl of rice crispies. Unfortunately the weight seems to be creeping back on, al l those chocolates I keep comforting eating. > I'll rest later, after I've been back to see him. I had to get home to > absorb the news and recover a little composure. [quoted text clipped - 6 lines] > both bucking up a bit. He's a good guy, but then he would be, wouldn't he? > His dad was one of the world's finest and the only one for me. You can both lean on each other and prop each other up when one of you flakes a little. It is very good to spread the load. > >> [You inspire me] > >> [quoted text clipped - 4 lines] > that 'could I have done more' angst right now, but managing to rationalise > it. Perfectly natural. If you could have done 110% of things by the book, you would still find something that made you feel guilty. Human nature makes us want to solve all our loved ones problems, wipe away the tears and make everything right. Unfortunately that isn't always possible. Know that you are doing everything possible Mysty, you have no regrets. > > Hope all goes well today with the transfer and fingers crossed that he > > rallies in a couple of days. > > I won't give up hope till it's taken from me. And I'll always feel his > love. Hold onto your hope Mysty. Everyone deals with this in different ways, I personally never lost my hope until Tony took his last breath, it helped myself and my children through. You will certainly always feel his love, it will always surround you and he will lurk there somewhere within. > Love and courage, > xx > > Mysty Take care for now and Warm Hugs from me. Alayne > Looks like I'm going to need you. The news wasn't what we wanted to hear. > Turns out the general hospital interpreted the blood results by different [quoted text clipped - 39 lines] > I won't give up hope till it's taken from me. And I'll always feel his > love. And his yours, Mysty, his yours. No matter how bad it seems to get, he will feel and hear you. It's comforting to know that he will be surrounded by so much love. Know that others are reading your messages here and their hearts are going out to you. ( ( ( Mysty ) ) ) J > September last he had a fit - and I nearly did, because I didn't know what > was going on. I had him rushed to the local general hospital and regretted [quoted text clipped - 18 lines] > intensifying this problem, but given his opioid tolerance and the doc's > confidence we let it go. Hi Mysty, mixes of medications can get terribly complicated for those of us who aren't experts in tweaking meds. Here's what I would say /do/ask. Medscape says "Pregabalin has linear absorption, 90% bioavailability, a 6-hour plasma half-life, and readily crosses the blood brain barrier." (which means twice a day should not have been a problem) so either as you say, there's a combination effect or his dose is too high. (Since you noticed the sedation immediately) http://www.jclinpharm.org/cgi/content/abstract/43/3/277 As a result, area under the plasma concentration-time profile (AUC) and terminal elimination half-life (t1/2) values increased with decreasing renal function. " My thinking is, (if his kidneys are okay), that being so sedated, he probably was not drinking enough water and the concentrations built up too much/fast. So, I think the patches tonight are a good idea. That will (I think) give him more time for what's currently in his system to clear and the fog to lift. Then talk to hospice tomorrow about a lower dose of Pregabilin.... If he's on the lowest dose, if the Pregablin is a "scorable" med and hospice thinks it's worth a try, then split them in two ( half twice daily) and see how that goes. Of course, talk these things over with hospice, since I'm not an expert. It's important that he not be in pain. Hugs J >> [Pregabalin - drowsy ] >> We'd checked the insert - and the net - and it did mention oxycodone [quoted text clipped - 3 lines] > Hi Mysty, mixes of medications can get terribly complicated for those > of us who aren't experts in tweaking meds. And a big *amen* to that. Everyone involved tries their best but I know where the experts are, and that's hospice. > Here's what I would say /do/ask. > [quoted text clipped - 3 lines] > either as you say, there's a combination effect or his dose is too > high. (Since you noticed the sedation immediately) I read all that before and it blurred before my eyes. Funny how it makes more sense now *you* say it. He was taking - IIRC - the minimum dose, 75mg bd. But his bodyweight is about that of a Yorkshire Terrier. They could hardly get a blood sample because he barely has any. I think that's relevant. [NB: I'm given to modest exaggeration and colourful phrase ;)] > http://www.jclinpharm.org/cgi/content/abstract/43/3/277 > As a result, area under the plasma concentration-time profile (AUC) [quoted text clipped - 4 lines] > probably was not drinking enough water and the concentrations built > up too much/fast. If I follow you, if his kidneys are less than OK, that's worse, right? He has long-term urine retention and recently developed quite severe oedema in his feet and legs from the steroids but was volume-depleted today and had a litre of saline on drip. Aargh, also our GP prescribed a diuretic. Bendrofluazide, supposed to be a mild one. He took that for 2 days before the crash. None since, naturally. All non-essential meds have been canned. Any involvement, d'you think? I could put all he drank in the last couple of days in one large mug. I lost count of the barely-touched drinks I found around the house. One day I microwaved the same cup of tea about a dozen times. He still didn't finish it. All he ate in the last week would feed one average man for a day. I tried everything to tempt him but he was always 'not hungry'. I think the sheer volume of drugs was enough to fill his gut - up to 30 oxycodone a day, plus other stuff! Add opioid constipation into the mix and it gets really tricky. We haven't found a laxative that doesn't come back the way it got in. > So, I think the patches tonight are a good idea. That will (I think) > give him more time for what's currently in his system to clear and > the fog to lift. It may be slowly lifting, but it's taking a lot longer than I expected. On my third visit today he made a small joke - I think. But a few minutes later he was incoherent. However, he stayed awake-ish for much longer. > Then talk to hospice tomorrow about a lower dose of > Pregabilin.... Perhaps. I'm a bit 'anti' now. He wanted to change the 'breakthrough' oxycodone for something else but nobody offered anything but 'more of the same'. Maybe that's the way to go. I tentatively asked about Actiq but didn't get a positive response. If necessary, I shall stamp my little feet. This *matters*. > If he's on the lowest dose, if the Pregablin is a "scorable" med and > hospice thinks it's worth a try, then split them in two ( half twice > daily) and see how that goes. Of course, talk these things over with > hospice, since I'm not an expert. No, it's capsules. But I *will* talk it through, you bet. For more than two years, I've 'been' him when he hasn't been himself, if you see what I mean. That was the deal. We can speak for each other in perfect trust. I'm not going to let him down *now*. > It's important that he not be in pain. It's *desperately* important to me. It's the most important thing in the world. I love that man. > Hugs Returned, gratefully. Mysty reading your posts and replying calmed me down > And a big *amen* to that. Everyone involved tries their best but I know > where the experts are, and that's hospice. [quoted text clipped - 27 lines] > It's *desperately* important to me. It's the most important thing in the > world. I love that man. Yes, hun, well it's more complicated than I realized but yes I was theorizing that either his kidneys weren't working right and/or he wasn't drinking enough, so the med wasn't clearing his body properly. Since he was on the lowest dose and it's not splittable, I can see why you might want to ditch it. There are other options, hospice will (hopefully) know. Tea is dehydrating, perhaps green tea is better, but water is the best. Poor man, no wonder he's not hungry with so many meds in his stomach. It's encouraging to read that he's perked up a bit today. Will hope for better days, starting tomorrow. Hugs Mysty, Keep in touch as you are able. Will be thinking of you both. J >> If necessary, I shall stamp my little feet. This *matters*. >> [quoted text clipped - 9 lines] > why you might want to ditch it. There are other options, hospice will > (hopefully) know. Sure they will. I think it may be 'back to the drawing board' time. Even the patches have never *quite* been up to scratch. You have no idea about the complications. I could go on but it would be tedious and anyway I have a bag to pack for tomorrow. ;) > Tea is dehydrating, perhaps green tea is better, but water is the > best. He likes tea for the caffeine - understandably - as he can't take coffee any more, but he doesn't actually *drink* much of it lately. Lucozade has been his favourite tipple for a while, and he manages to drink about a quarter of the 100ml or so I pour out. > Poor man, no wonder he's not hungry with so many meds in his > stomach. I'm sure the oxycodone was causing more [gastric] pain than it cured. But the patches mask the *origin* of the pain so he couldn't identify it clearly. > It's encouraging to read that he's perked up a bit today. Just called the hospital, he finally crashed on the bed. I left him at 10 or so, perched on the edge, inert but unwilling to move and tethered to a drip so I couldn't do much to move him. > Will hope for better days, starting tomorrow. I'm optimistic. I really am. It's one of my more irritating traits, and it kept him alive for this long, so he tells me. > Hugs Mysty, mmmmm :) > Keep in touch as you are able. Will do. I suppose at least I'll have more time to myself. > Will be thinking of you both. Thanks again. It really does help. Love and peace Mysty Off to pack, then to bed. > Add opioid constipation into the mix and it gets really > tricky. We haven't found a laxative that doesn't come back the way it got > in. When constipation hit me It took a Fleet ennema to get things going again. Have you tried that? Signature"Luke, I lied. Bill Shatner is your real father." --Darth Vader Bob In Carmel, CA Well, that's it. His son and I left the hospice just after 6 pm today. He was resting peacefully, quietly snoring. I so loved that sound. They had adjusted his pain meds and his bed was wonderfully comfortable , softly purring like his favourite cat. He looked better than we'd seen him in a while. We both felt happy he was in the right place just now. I hoped against hope that he might rally round and come home for a few days, but I knew it wouldn't be for long. At 7:11 my phone rang. 'He looks poorly', the voice said. 'You'd better come right away.'. 'I'm in the car already', I said, grabbing my coat and running. I don't know when we got there, but if I'd observed speed limits it'd have been much later. Before 8, anyway. The nurse who'd phoned was waiting. 'You'd better hurry!', she told us. We ran up the corridor. Sod the visitor's book! He was gone within seconds. We held a hand each, his son and I. I kissed his lips, his fingers, his forehead, his nose. I told him all I wanted him to hear, his son quietly sobbed. His pain had ended. He isn't hurting any more, but we are. I asked his advice, as it were. We had a couple of drinks ['you've a busy day tomorrow!', his beautiful voice told me. I *so* wish he'd made that recording he promised me!], obediently ate - he was always on at me to eat - and talked about the *good* times and what we each loved about him. We each had many stories the other one hadn't heard. His body was useless to him and on one level I'm glad he's free of it. His last words to me? 'I told 'em', he said when he woke in the Bad Place on Sunday morning. 'Bugger!' he said. 'Double bugger!' he added. I couldn't help but smile. His last fully conscious words were 'and you're the love of *my* life'. RIP Dr Rick Nolan, 21/04/52 - 22/11/04 Love and peace to all, Gill my real name, and his. Sorry to hear of your loss, but sounds like the suffering is over. > Well, that's it. > [quoted text clipped - 48 lines] > Gill > my real name, and his. > > His last fully conscious words were 'and you're the love of *my* life'. > > > > RIP Dr Rick Nolan, 21/04/52 - 22/11/04 > > > > Love and peace to all, {{{{{Hugs}}}}} to you and to Rick's son. > Well, that's it. > > His last fully conscious words were 'and you're the love of *my* life'. > > RIP Dr Rick Nolan, 21/04/52 - 22/11/04 Dear Gill, I am so sorry for your loss. Rich will live on in your heart and memories. May you be comforted by knowing that he passed peacefully surrounded by loving family and that you did everything possible for him. Please feel free to come here for comfort or venting as you are able. We care. *hugs* J >> RIP Dr Rick Nolan, 21/04/52 - 22/11/04 > [quoted text clipped - 5 lines] > Please feel free to come here for comfort or venting as you are able. > We care. Thank you, J. I'm consoled by all the good he did in his life, and that he feels no more pain. And by all the messages of support I've received since. *grateful hug* Mysty > >> RIP Dr Rick Nolan, 21/04/52 - 22/11/04 > > > I'm consoled by all the good he did in his life, and that he > feels no more pain. And by all the messages of support I've received since. > > *grateful hug* Hello Mysty, hug gratefully received. I realize with his son and the ex there, you may be busy in the next few days (or longer). Quite by chance, while looking for something else, I ran across this web page http://www.cancerlynx.com/behrens.html I thought perhaps you might want to read it. There's some nuggets of wisdom and insight there, especially the last half of the page. While I'm here, I'll give you some other resources news:alt.support.grief http://www.griefnet.org/ GriefNet.org is an Internet community of persons dealing with grief, death, and major loss. We have 47 e-mail support groups and two web sites. Our integrated approach to on-line grief support provides help to people working through loss and grief issues of many kinds. Our companion site, KIDSAID, provides a safe environment for kids and their parents to find information and ask questions. http://www.widownet.org/ Widownet seems to under construction at the moment, but has a mirror/old site listed there. Quite a few have mentioned that they've found the latter especially helpful. You may wish to save this reply to your disk. In my newsreader, I can hightlight a post, then click on "reply", then add a text character to the subject line or change the subject line to (for instance) "grief". Then my software asks "do you wish to save to the drafts folder" and if I say yes, then it stays in the drafts folder so I can easily find it later. I hope you know I'm not sending you away. Stay with us as long as you find it helpful. Should you decide, at some point, to migrate over to one of the other resources or for other reasons, be absent here, I sure hope you'll pop in from time to time, to let us know how you are doing. I care and often think of those whose loved ones have passed on. Especially the first few years, since I know that they are usually the worst.. So please keep in touch, from time to time. Hugs to you, J >>>> RIP Dr Rick Nolan, 21/04/52 - 22/11/04 >>> [quoted text clipped - 7 lines] > I realize with his son and the ex there, you may be busy in the next > few days (or longer). Looks like the ex isn't coming after all, but organising a memorial service in the town where he lived for many years. Since he had no stomach for religion, it saves any potential conflict as I'm respecting *his* wishes for his body's final journey. Since she'll save a substantial air fare, she has offered via her son to make a donation to help with costs. As we never managed to marry - it couldn't have been possible until he was too ill - I won't receive any help from the state, and am already perilously deep in debt from providing for all his needs. That isn't why I wanted to marry him, though. You can guess why. :o) > Quite by chance, while looking for something else, I ran across this > web page http://www.cancerlynx.com/behrens.html > I thought perhaps you might want to read it. There's some nuggets of > wisdom and insight there, especially the last half of the page. Thank you very much for that - it's exactly what I needed to read right now. I'm planning to write something similar, and some Letters to my Love, telling him all the things I didn't dare say near the end. If anything there ends up worth reading I'll be sure to let you know. > While I'm here, I'll give you some other resources > news:alt.support.grief I took a look there this morning - a bit troll-infested and I don't feel right there yet. I was concerned about polluting this place with matters that no longer belong here. But I'll stick around, if that's OK, because now I'm 'outed' I may have useful contributions to make. I developed a fair few strategies in 14 rounds of chemo! > http://www.griefnet.org/ > GriefNet.org is an Internet community of persons dealing with grief, [quoted text clipped - 3 lines] > Our companion site, KIDSAID, provides a safe environment for kids and > their parents to find information and ask questions. I'll take a look. Thank you. > http://www.widownet.org/ Widownet seems to under construction at the > moment, but has a mirror/old site listed there. > Quite a few have mentioned that they've found the latter especially > helpful. It's on my 'visit later tonight' list! I really don't know what I'd do without my computer. I'd never have met Rick, for a start. Life would have been very different but if I could go back in time I'd do exactly the same again. > You may wish to save this reply to your disk. Done! I often save useful posts, and you feature frequently. :o) > I hope you know I'm not sending you away. Stay with us as long as you > find it helpful. Appreciated. I'll try, as I said, not to muddy the waters, but to share any insight that may be helpful. Since he was a doctor, I've learned more that I ever wanted to know about cancer. And psychology, but that was always one of my natural talents. > Should you decide, at some point, to migrate over to one of the other > resources or for other reasons, be absent here, I sure hope you'll > pop in from time to time, to let us know how you are doing. I care > and often think of those whose loved ones have passed on. I will. I still occasionally post to other groups where I spent time before, just to catch up and make old friends smile for a moment. It counts. > Especially the first few years, since I know that they are usually > the worst.. So please keep in touch, from time to time. So far, so good. I know the concern and support I've received from friends, family, colleagues and the docs today will dry up before long, but I'm milking it while I can. ;o) I'll be back. *big hug* Gill off the rollercoaster, on to the other rides now > Well, that's it. > [quoted text clipped - 42 lines] > Gill > my real name, and his. Gill, I am so sorry. Take heart that you did all you could against impossible odds. You will be full of pain and anguish, probably aimlessly wandering around the house now that the physical caring is over. But so know that his pain and suffering are over, that he is finally at peace. Take comfort from the good memories that you have and one day I promise you, those memories will evoke smiles rather than tears. Thinking of you and sending you a Warm Hug. My ears are always listening, my arms are always open. Take care now and know that we are all here for you. Hugs Alayne My dear Alayne, Thank you so much. Your words mean more because I know you've been there too. This morning I'm numb and there are things I must do. I think that I'm somewhat anaesthetised is for the best. >> Well, that's it. >> He isn't hurting any more, but we are. >> RIP Dr Rick Nolan, 21/04/52 - 22/11/04 > I am so sorry. Take heart that you did all you could against > impossible odds. You will be full of pain and anguish, probably > aimlessly wandering around the house now that the physical caring is > over. But so know that his pain and suffering are over, that he is > finally at peace. In the last week, so many people told me how he valued my support. When I saw him on Monday morning, from the look of his face I knew it wouldn't be long. For whatever reason, he was simply too far gone. My Rick couldn't live in that poor emaciated body any more but his amazing heart just kept going somehow. > Take comfort from the good memories that you have and one day I > promise you, those memories will evoke smiles rather than tears. Right now, I have both smiles and tears. I suppose knowing it was going to happen for some time went some way to prepare me for losing him. But it couldn't ever *really* prepare me for how I feel without him. > Thinking of you and sending you a Warm Hug. Hanging on and not letting go. We could hardly even hug at the end; he was so fragile and hurt all over. When his son hugged me, sobbing - he's a big fella, not like his dad - he stood on my feet. Twice. Your hugs count. Thank you. > My ears are always listening, my arms are always open. Take care now > and know that we are all here for you. I feel that. And Rick wouldn't want me to be desolate. He tried so hard to prepare me for this. I'll never really lose him. Don't get me wrong; I'm not about to do anything silly. But I dedicated my life to him and now it feels like I have no idea what to do with it. I guess I'll just hum along to the music for a while. Love and inspiration [he was mine!] Gill misting up again > My dear Alayne, > > Thank you so much. Your words mean more because I know you've been there > too. This morning I'm numb and there are things I must do. I think that > I'm somewhat anaesthetised is for the best. Numbness is indeed a good description of how you will feel. I remember feeling quite bereft too. I had spent so long with my life revolved around Tony and the hectic last weeks of his life, that when it was all over, I simply didn't know what to do with myself. All of a sudden my life lost it's purpose, there were no more trips back and forth to the hospice, no more juggling with time. Preparing for the funeral will focus you for a bit, people will offer their condolences and comfort. Steadily life will return to some form of "normal" pattern. I think that life is a bit like a book, full of different chapters with a different story and when you have finished one chapter, you turn the page, and start another. > > I am so sorry. Take heart that you did all you could against > > impossible odds. You will be full of pain and anguish, probably [quoted text clipped - 7 lines] > live in that poor emaciated body any more but his amazing heart just kept > going somehow. Of course he valued your support Gill, you were there for him. I've heard some horror stories about some people abandoning their partners when the road got tough. I don't know what twist of fate deems who it takes or not, it does seem so cruel. I remember feeling very bitter that Tony had only just turned 40 and he passed away, but then I remembered seeing a little lad outside the scanning room carrying a radiotherapy mask too, he could have been no more than about 5 or 6. Although death is so devestating to those left behind, when people become so poorly, they have no quality of life and it becomes a release for them eventually. > > Take comfort from the good memories that you have and one day I > > promise you, those memories will evoke smiles rather than tears. > > Right now, I have both smiles and tears. I suppose knowing it was going to > happen for some time went some way to prepare me for losing him. But it > couldn't ever *really* prepare me for how I feel without him. I don't think anything really prepares you for such a loss. Yes, your eyes may acknowledge what you are seeing but your heart certainly doesn't. I do think that perhaps the grieving process starts earlier, when the illness invades the body and the person becomes unrecognisable from what they once were. In a strange way, I felt that watching Tony fade away over the months, whilst traumatic at the time, somehow eased my pain slightly. When I was in the pits of despair I made myself think of him as the man that he became rather than what he once was, to force myself to believe that his passing was ultimately for the best. > > Thinking of you and sending you a Warm Hug. > > Hanging on and not letting go. We could hardly even hug at the end; he was > so fragile and hurt all over. When his son hugged me, sobbing - he's a big > fella, not like his dad - he stood on my feet. Twice. I feel for his son too, perhaps sharing your pain together will ease things slightly for you. You will just have to teach him to give Hugs without stepping on your toes. > Your hugs count. Thank you. > [quoted text clipped - 3 lines] > I feel that. And Rick wouldn't want me to be desolate. He tried so hard to > prepare me for this. I'll never really lose him. No you will never really lose him. He may not be with you in a physical form and eventually you may not think of him every waking minute. Tony passed away nearly fifteen months ago now (and I had to stop and count there when last year I could have told you instantly!) and it still feels as though my loss is only temporary. My life has moved on slightly, I have perhaps adjusted to the change in my circumstances but occasionally I still stop briefly and smile at his photos (I used to be completely batty and chatter away to them!) It's a bit cliche but actually quite true, time does make a good healer. > Don't get me wrong; I'm not about to do anything silly. But I dedicated my > life to him and now it feels like I have no idea what to do with it. I > guess I'll just hum along to the music for a while. Wallow in your grief for a bit Gill, cry til the tears stop flowing, make no short term plans for doing anything. There will come a time when you wake one morning and you will want, and will find, a purpose to your life again. It maybe something simple, I decided to redecorate from top to bottom (and then felt guilty ;-) but just go easy on yourself. > Love and inspiration > [he was mine!] > > Gill > misting up again Hugs Now Alayne (misting up with you) |
Reply to this Message |
 Sign In
 Join
 My Latest Posts My Monitored Threads My Blog My Photo Gallery My Profile My Homepage Start New Thread Enable EMail Alerts Rate this Thread
|
©2008 Advenet LLC Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.