 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Cancer / April 2004How is it going Beth and David
Just wondered how things were going with you guys? And how you are coping with being care givers. Hugs all around Alayne  SignatureOutgoing mail is certified Virus Free. Checked by Norton AV I don't normally do adverts but... Report your SPAM http://spamcop.net/anonsignup.shtml > Just wondered how things were going with you guys? And how you are > coping with being care givers. > > Hugs all around > > Alayne Funny, I was just about to post something for the first time in a long time, and I saw this - I'm guessing I'm the David? Thank you - things with John are OK the moment (John is my stepfather, who has a GBM4 brain tumour, for those that don't know). He finished his radiotherapy course about 4 weeks back, and they even managed to get to Spain for a holiday, which took a bit of organising, but was good for both him and my mother. On the downside, there's been a physical deterioration, in that his walking seems to have gone downhill again, and that's a worry because of the DVT scare we had. Also, although I think I can discern a bit of mental improvement - he seems more able to concentrate and doesn't lose track of conversations - my mother doesn't agree. Maybe it's because she's with him 24 hours a day, whereas I see them every 3 or 4 days, or maybe it's just wishful thinking on my behalf. Getting to the reason I was going to post, does anyone know much about terminal care options in the UK? It might sound a strange question, but it's the first time I've had to deal with this sort of thing. I'm very aware that John probably only has a few months at best now, and when it gets to the later stages, the last thing I want is for my mother to be trying to sort things out then. John wants to stay in their house for as long as possible, and he wants my mother to look after him. That's not really feasible, as my mother is not a nurse (she's a biochemist specialising in invertebrate animals, so no problem if he'd been a jellyfish), and she's also 5 feet tall and 8 stone (112 lbs), and John is 6 feet tall and at least 13 stone. Are there people we can get in touch with about 24 hour home care? Or does anyone know about how hospices work (again, like I said I've never had to do this before)? We'd all rather he didn't have to end up in hospital if at all possible (though I realise he may have to) because Newcastle General is the closest specialist hospital, and that's over 20 miles from their house. Sorry this was so long, and thanks for anything anyone can tell me. > <snip> > Getting to the reason I was going to post, does anyone know much about [quoted text clipped - 16 lines] > house. Sorry this was so long, and thanks for anything anyone can tell > me. Hello John, There are two resources mentioned here. http://www.cancerhelp.org.uk/help/default.asp?page=5798 I'm sorry to hear about John but it is so much better to be prepared. Perhaps they'll come out as an initial "get to know/introduce" and then only come from to time to time. And if/as he worsens, more frequent visits. Hopefully it will be the same person each time so that John and your mother feel comfortable with the person. I'm not sure that they provide 24-hour care but may know of some who've retired who would be willing to be "live-ins" as the time nears or do a 12 hours shift whereas the mariecurie do the other 12. Do talk to them about this. All my best J > There are two resources mentioned here. > http://www.cancerhelp.org.uk/help/default.asp?page=5798 Thanks - there's some useful stuff on there, particlarly what's on the Marie Curie web site. Like I said, I've never had to do this before - 3 of my grandparents died suddenly at a fair age, one is still alive, and at my age I really wasn't expecting problems with my parents/step parents - so I didn't really know where to start. > Funny, I was just about to post something for the first time in a long > time, and I saw this - I'm guessing I'm the David? Thank you - things > with John are OK the moment (John is my stepfather, who has a GBM4 brain > tumour, for those that don't know). He finished his radiotherapy course > about 4 weeks back, and they even managed to get to Spain for a holiday, > which took a bit of organising, but was good for both him and my mother. It is good to read that your mother and John managed to get away for a holiday, it will have given them a chance to get away from it all for a while and make some happier memories, hopefully they came back a little refreshed. > On the downside, there's been a physical deterioration, in that his > walking seems to have gone downhill again, and that's a worry because of [quoted text clipped - 3 lines] > she's with him 24 hours a day, whereas I see them every 3 or 4 days, or > maybe it's just wishful thinking on my behalf. Tony had a bit of trouble with his legs after a while, we called them "tremors". We found that they played up worse when he tried to do something "quickly" rather than concentrating on what he was doing. In our own laymans terms it was like he was confusing his brain with too much information and the result that his legs would give way. We found that when this first started to occur, if he sat down for 5 minutes, he would then be able to get up and walk normally again after a while. > Getting to the reason I was going to post, does anyone know much about > terminal care options in the UK? It might sound a strange question, but > it's the first time I've had to deal with this sort of thing. I'm very > aware that John probably only has a few months at best now, and when it > gets to the later stages, the last thing I want is for my mother to be > trying to sort things out then. There is lots of support available to your family David. Firstly there are Macmillan nurses (who provide emotional and practical support) and there are also Marie Curie nurses (who provide hands on care). There are also hospices. As we discovered, they are not just there for the "end of life" care, they also offer respite care for both the patient and the carer. This is something that I would definitely advise looking into. Looking after someone full time really takes its toll on a person. When Tony received the news about the radiotherapy, he went to our local hospice for a week. It did both himself and myself the power of good. The people that work there are truly wonderful, they cover symptom control, respite and a whole host of other things that you probably haven't thought of. The hospice in particular take the "whole family" on board and there are various councellors and therapies available to all. At our local hospice there was even an open day just for the carers and massages etc. were available too. Tony came out of the hospice after a week, and actually felt at peace, and I had a week of knowing that someone else was dealing with his meds. etc. You can probably be put in touch with these three organisations via your local GP or through the Oncology at the hosp. > John wants to stay in their house for as long as possible, and he wants > my mother to look after him. That's not really feasible, as my mother is [quoted text clipped - 8 lines] > house. Sorry this was so long, and thanks for anything anyone can tell > me. As far as John staying at home goes, my advice would be to play it by ear, at the end of the day decisions will have to be made with the whole family in mind. It broke my heart that Tony ended his days in the hospice rather than at home, but I do have two small daughters to consider too. And I truly feel that the hospice was the best place for him, he had 24/7 care, we were able to visit as and when we liked, the girls really liked the place (it is so unlike a normal NHS hospital), it was more of a home from home really and the nursing staff (who all deserve medals anyway) knew how do deal with any new situation as and when it arose. I wish you all well David, keep in touch, we are never far away should you need us. Hugs Alayne > It is good to read that your mother and John managed to get away for a > holiday, it will have given them a chance to get away from it all for > a while and make some happier memories, hopefully they came back a > little refreshed. My mother said the best thing was that John no longer wanted to sit in the bar after they'd eaten, so she didn't get disturbed by him drunkenly trying to find the bed at 3am. He never did know when to say "no, that's enough wine for tonight", but now he just gets tired. Actually, related to that, one odd thing is he's suddenly got an incredibly sweet tooth - he'll eat chocolate non stop until it's taken away from him, and he gets cravings for full sugar soft drinks. I don't know what's caused that. > There is lots of support available to your family David. Firstly > there are Macmillan nurses (who provide emotional and practical > support) Yes, he's had one assigned by the hospital - she seem very good. > and there are also Marie Curie nurses (who provide hands on > care). There are also hospices. As we discovered, they are not just > there for the "end of life" care, they also offer respite care for > both the patient and the carer. This is something that I would > definitely advise looking into. I didn't know that. Thanks, I'll give them a call - I think my mother will need a break every now and again. Trouble is, John's absolutely determined he doesn't want enyone else looking after him, not even me, my wife or his two natural sons and their wives. It's very hard to argue with him because he just gets stubborn and repeats the same things over and over. I can see his point, and I know it's the tumour talking, not him, but I've got to think of my mother too. When they got back from Spain, I think he got it into his head that he's not leaving his home again. > As far as John staying at home goes, my advice would be to play it by > ear, at the end of the day decisions will have to be made with the > whole family in mind. It broke my heart that Tony ended his days in > the hospice rather than at home, but I do have two small daughters to > consider too. That's something we don't have to worry about, thank God. And I truly feel that the hospice was the best place > for him, he had 24/7 care, we were able to visit as and when we liked, > the girls really liked the place (it is so unlike a normal NHS > hospital), it was more of a home from home really and the nursing > staff (who all deserve medals anyway) knew how do deal with any new > situation as and when it arose. I think the concern with that is John getting emotional about it (he's starting to have more and more extreme mood swings) and possibly just point blank refusing to go, and the fact that they live in a smallish town, quite a distance from the nearest hospice. > I wish you all well David, keep in touch, we are never far away should > you need us. Thank you. I've got quite a bit out of this group - it makes you realise we're not the only people this has happened or is happening to. > My mother said the best thing was that John no longer wanted to sit in > the bar after they'd eaten, so she didn't get disturbed by him drunkenly [quoted text clipped - 3 lines] > he'll eat chocolate non stop until it's taken away from him, and he gets > cravings for full sugar soft drinks. I don't know what's caused that. Is he taking Dexamethasone? (steroids) Tony was like a hoover in the kitchen on these!! > > and there are also Marie Curie nurses (who provide hands on > > care). There are also hospices. As we discovered, they are not just [quoted text clipped - 11 lines] > Spain, I think he got it into his head that he's not leaving his home > again. It is probably also the "independent" streak, if you don't take help, then you don't need it theory? I wonder if you could go in on your mother's angle? Perhaps you could stress that your mother needs a break from the caring and if he went into respite it would do her a lot of good. It's a very difficult one because we all have our own "myths". At Tony's diagnosis we certainly didn't want anything to do with Macmillan Nurses or Marie Curie nurses (until we met them) and a hospice was a place that you went to die, in our opinion. However, once Tony went in the first time, boy did our opinions change. At our local hospice they also had day centres, perhaps a "day trip" might allay any fears that John has. > I think the concern with that is John getting emotional about it (he's > starting to have more and more extreme mood swings) and possibly just > point blank refusing to go, and the fact that they live in a smallish > town, quite a distance from the nearest hospice. Have you mentioned his mood swings to the doc. David? Perhaps they could change his medication to help ease these symptoms. Tony developed a psychosis where he tried escaping the hospice and was convinced that there was a conspiracy against him. I believe this was due partly to the amount of morphine that he was on as well as the tumour. They changed his meds to pheno something and this calmed him down again. At the end of the day David, if your mum starts to have a hard time, you will have to call someone in to help, despite John's protests. Perhaps he is also partly running scared and in his more lucid moments is aware of what he is facing. Tony knew what was going on most of the time and sometimes he would even be too scared to go to his hospice room at night for fear that he wasn't going to wake up again, all I could do was just offer loads of reassurance over and over again (he also had short term memory loss). > Thank you. I've got quite a bit out of this group - it makes you realise > we're not the only people this has happened or is happening to. Sadly, there are an awful lot of people in similar situations. Take care now David Alayne > Is he taking Dexamethasone? (steroids) Tony was like a hoover in the > kitchen on these!! My thoughts too and/or he's self-medicating, some chocolates or clear drinks also have caffeine in them (unbeknownst to many) which could affect his sleep patterns....wide awake when the rest of the house is sleeping, then sleeping during the day, so it's good that they're being curtailed to some degree. > I<snip> At the end of the day > David, if your mum starts to have a hard time, you will have to call someone > in to help, despite John's protests. I share your concerns especially since the hospice is so far from where they live and John's apparently a big man and his wife may be stuck out there all alone and knowing how brain tumours are unpredictable.... >> Is he taking Dexamethasone? (steroids) Tony was like a hoover in the >> kitchen on these!! [quoted text clipped - 4 lines] > sleeping, then sleeping during the day, so it's good that they're > being curtailed to some degree. I think it's the sugar he's after - he'll drink gallons of something called Irn Bru (it's a revolting soft drink from Scotland with about a pound of sugar per litre), and he'll eat any sort of sweets, even Werther's Originals, which takes some doing. You could be right about the side effects though, because chocolate and coke feature quite large in what he'll work his way through. I'll mention that to my mother, I think. > I share your concerns especially since the hospice is so far from > where they live and John's apparently a big man and his wife may be > stuck out there all alone and knowing how brain tumours are > unpredictable.... I agree we'll need to get someone in, and there will come a point where John's objections can't override that. It's not going to be easy though, because I think he'll see that as the beginning of the end - like Alayne said, John (and a lot of other people) can take the attitude that refusing help equates to not needing help. > >> Is he taking Dexamethasone? (steroids) Tony was like a hoover in the > >> kitchen on these!! [quoted text clipped - 11 lines] > effects though, because chocolate and coke feature quite large in what > he'll work his way through. I'll mention that to my mother, I think. Yes, could well be Iron Brew (fizzy drink after all), but steroids also increase appetite and "pep you up a bit". We worked out that Tony took his for breakfast and lunch and therefore was more active during the day rather than being buzzy at night. He did put on about 4 stone in weight all in all and that certainly was due to the steroids. > > I share your concerns especially since the hospice is so far from > > where they live and John's apparently a big man and his wife may be [quoted text clipped - 6 lines] > said, John (and a lot of other people) can take the attitude that refusing > help equates to not needing help. Agree David, but also lest not forget your mum. Perhaps someone could come in anyways, if only to give her some moral support (Macmillan nurses are also there for her too) and that way someone could be a familiar face. It is such a toughy, you want to do what is right for the patient but you do have to weigh up what is also needed by the rest of the family. And I am sure that John would not want to think that he was putting his wife through any unnecessary stress. Tony first went into the hospice to give me a break because he could see the stresses and strains that it was causing me to continually look after him at home, and once there he appreciated and understood the hospice far more. But it was arranged on a "for my needs" basis, rather than his own which I am convinced made him feel a lot better than thinking it was because of his own health. > Have you mentioned his mood swings to the doc. David? Perhaps they could > change his medication to help ease these symptoms. Tony developed a > psychosis where he tried escaping the hospice and was convinced that there > was a conspiracy against him. I believe this was due partly to the amount > of morphine that he was on as well as the tumour. They changed his meds to > pheno something and this calmed him down again. Geez I did it again, I pressed some (keyboard) key combo and it posted before I was finished. Phenobarbital ? An anti-convulsant and sedative medication used to treat seizures I do remember the trouble that developed. I would hate to see that happen at home with only David and his Mom to cope with that. I would think it was more the tumour. I've never seen Mike mention that type of behaviour with morphine. Can you remind me please? Was he able to come home after that? Difficult decisions between wanting him at home and ensuring the safety of all, yet if the medications are required, David and his mother will have to start getting used to the idea of hospice rather soon, I would think. (rather than have to call in the local law enforcement if things get too out of control). I wouldn't want to see that. On the other hand, there's no guarantee that what happened with Tony will happen with John either, but your experience is important for David (and others here) to know. Hugs Alayne J > > Have you mentioned his mood swings to the doc. David? Perhaps they could > > change his medication to help ease these symptoms. Tony developed a [quoted text clipped - 7 lines] > Phenobarbital ? An anti-convulsant and sedative medication used to treat > seizures Yes, sounds like it, pheonobarbitone (shucks, spelling!) not for the anti-convulsant part (he was already on Carbamazepine) but certainly for the sedation. > I do remember the trouble that developed. I would hate to see that happen at > home with only David and his Mom to cope with that. I would think it was more > the tumour. I've never seen Mike mention that type of behaviour with morphine. I think that the psychosis was a rather rare symptom, certainly the hospice had not come across it before which is why there were concerns that the staff would not be able to cope (mainly due to Tony's size and mobility!) But they did put his "conspiracy theory" down to the heavy doses of morphine > Can you remind me please? Was he able to come home after that? > Difficult decisions between wanting him at home and ensuring the safety of all, > yet if the medications are required, David and his mother will have to start > getting used to the idea of hospice rather soon, I would think. (rather than > have to call in the local law enforcement if things get too out of control). I > wouldn't want to see that. No J he was not able to come home after that. It was probably the worst decision in my life to have to make, but it wasn't just my decision, the doctors also thought that he should not come home. Because of the sedative effect of the new medication he then was asleep pretty much most of the time, and once they decreased the sedation he had slipped into unconciousness anyways. I would point out to all reading this however, that this was during the last stages, probably the last week-10 days and is an unusual symptom rather than the norm. but it obviously can happen. A brain tumour is very unpredictable in nature and because it involves the "control panel" of a persons very being, be prepared for the unexpected really. Another tough decision I had to make regarded the sedation. I had to give my permission to keep him sedated because the alternative would have been that he went to a psychiatric hospital and I knew that Tony certainly would not have wanted that nor I or the girls. > On the other hand, there's no guarantee that what happened with Tony will happen > with John either, but your experience is important for David (and others here) > to know. Yes, J, there are certainly no guarantees that this will happen with anyone else. Another guy called John at the hospice also had a GBM4 and he was certainly far more peaceful and from Coral's posts, her Brian (husbands name not tumour name!!) also passed more peacefully (I just think that it was typical Tony to kick up a storm right to the end!!) > Hugs Alayne > J And Hugs to you too Petal... Alayne> > No J he was not able to come home after that. It was probably the > worst decision in my life to have to make, but it wasn't just my > decision, the doctors also thought that he should not come home. That must have been truly horrible for you, I can't imagine how you must have felt. > > No J he was not able to come home after that. It was probably the > > worst decision in my life to have to make, but it wasn't just my > > decision, the doctors also thought that he should not come home. > > That must have been truly horrible for you, I can't imagine how you must > have felt. The strange thing is that you don't realise what you have been through until you stop and have time to consider the past. Because symptoms of a brain tumour creep up on you gradually, you kind of get used to them without really noticing them, they are simply yet another hic-cup along the way. I think that the initial diagnosis of a brain tumour is so earth shattering that almost everything else pales in comparison. I don't know, it's a kind of acceptance really of the way that things are. I remember the only occasion that I really took on board how ill Tony really was, was when we took the girls to Lego Land with some friends (all courtesy of the Willow Foundation), I happened to be queuing quite high up with the girls for a ride, and I looked down and saw Tony and our friend Andy and for the first time, I saw him as others must have - just this large guy staring vacantly from a wheelchair, but it was only a momentary glance, the rest of the time he was just my Tony with a medical condition that we were dealing with. I always look at both sides of the coin in life. Yep, a brain tumour is a tragedy, yep, it is even more of a tragedy when the person is only 39. But, he could so easily have had a bike prang, or a heart-attack or some other spontaneous form of death. At least with his tumour, we had chance to sort ourselves out, to make any necessary arrangements, in a strange way, to have some time coming to terms with the fact that he wasn't going to be with us forever. And hey, I am the only member of our family that managed to stick to our wedding vows!! (You have to get used to my sense of humour by the way - it is one of the things that manages to keep me sane!) >> Actually, related to that, one odd thing is he's suddenly got an >> incredibly sweet tooth - he'll eat chocolate non stop until it's [quoted text clipped - 3 lines] > Is he taking Dexamethasone? (steroids) Tony was like a hoover in the > kitchen on these!! He is taking steroids, but I'm not 100% sure what they are. They upped the dose after the radiotherapy. When they >> got back from Spain, I think he got it into his head that he's not >> leaving his home again. [quoted text clipped - 4 lines] > break from the caring and if he went into respite it would do her a > lot of good. I think on one level he understands that, but when I talked about mood swings, it's not so much temper as an almost child like streak. He's not shouting or lashing out, he's just refusing to do things. For example, my mother tries to get him to walk round the garden, which we know he can do (albeit very slowly), and he just says no. There's not a lot we can do other than persuasion, which he does sometimes respond to. I think part of it is asserting himself, which is a pretty hard thing to do when you're almost housebound and totally dependant on others. This will mean nothing to anyone outside the UK, but I don't know if you've seen that comedy on BBC2 called Little Britain? He reminds me of the Matt Lucas character in the wheelchair. > He is taking steroids, but I'm not 100% sure what they are. They upped > the dose after the radiotherapy. It is probably the same steroids because I think that they are standard for brain tumours. I think that the max dose that a person can go up to is 16 mg (8 little pills) > I think on one level he understands that, but when I talked about mood > swings, it's not so much temper as an almost child like streak. He's not [quoted text clipped - 7 lines] > comedy on BBC2 called Little Britain? He reminds me of the Matt Lucas > character in the wheelchair. Again, it could be down to his own stubborn independence. At the end of the day, a tumour has stripped just about everything away from him, and perhaps by saying no, John feels that at least he has a little control left over something. One of the last things that I recall about Tony being at home, was having a little "tiff" with him about him having some sleep, he was practically asleep upright and absolutely refused point blank to go and lay down, I just had to give up in the end. As carers we can be all too aware of how poorly someone is but it must be very difficult for those with a brain tumour to see themselves in the eyes of others. When Tony used to get stubborn or ansty with me, I found it helped thinking that perhaps he was being stubborn or ansty with the tumour and his predicament rather than with those around him. No, not sure that I have seen Little Britain - Tony's pre-tumour personality was more of an Alf Garnett!! Don't overlook yourself either David, your involvement will take it's toll on you as much as on anyone else and you will also have your own protective love of your mother and feelings of your pain as you watch her have to cope with the situation too. Do what you can David, but I strongly urge you to get some help in, sooner rather than later. Hugs now. Alayne >> This will mean nothing to anyone outside >> the UK, but I don't know if you've seen that comedy on BBC2 called >> Little Britain? He reminds me of the Matt Lucas character in the >> wheelchair. The sketch is about a man in a wheelchair and his carer (brother, maybe?), and what usually happens is the one in the wheelchair points randomly at something in a record shop or somewhere and it tends to be soemthing like this: "want that one" "now, you know you don't like Michael Jackson, let's get you a Pink Floyd record instead, you like Pink Floyd" "no, want that one" "are you sure?" "yeah, want that one" "are you absolutely 100% sure that's the one for you? You won't change your mind? You definitely don't want a Pink Floyd one?" "no, want that one" "OK, we'll get you that one" (they buy it and leave the shop) "don't like Michael Jackson, want a Pink Floyd one" Daft really, it's funnier than it sounds, but it's how we sometimes feel with John. I know it's not him, it's the tumour, but it can be frustrating to say the least. > When Tony used to get > stubborn or ansty with me, I found it helped thinking that perhaps he > was being stubborn or ansty with the tumour and his predicament rather > than with those around him. I'm sure that's true. It obviously changes personalities to at least some extent, and I can't imagine what it's like knowing you've got something in your head that's eventually going to be the end of you. I'd get angry and stubborn too. I'm going to see them tonight, so I'll see if I can talk to my mother about getting someone in, even for a few hours a week. > The sketch is about a man in a wheelchair and his carer (brother, > maybe?), and what usually happens is the one in the wheelchair points [quoted text clipped - 17 lines] > with John. I know it's not him, it's the tumour, but it can be > frustrating to say the least. I understand where you are coming from (and Pink Floyd is so much better than Wacko Jacko anyway!), but then I also have kids! > > When Tony used to get > > stubborn or ansty with me, I found it helped thinking that perhaps he [quoted text clipped - 5 lines] > in your head that's eventually going to be the end of you. I'd get angry > and stubborn too. I can never imagine what it must be like either, particularly with a GBM when from the outset you are told that it is incurable, everyone used to say that I was so strong coping with it all, but to me, Tony must have had one hell of a strength in the first place. > I'm going to see them tonight, so I'll see if I can talk to my mother > about getting someone in, even for a few hours a week. I really do think that would be a good idea David. I am sure that you mum must have loads of things buzzing around her head right now and personally I found that Macmillan nurses were particularly good at drawing out emotions from you that you try so hard to hide from other folk (must be the training). I really don't want to be negative with you, but you never know what is around the corner and if a really stressful situation occurs the last thing that you would want to be doing is contacting outside folk to help, but at least if you set something up now and they are aware of the situation then they would only be a phone call away should the need arise. Our local hospice even ran "carers days" when the carers could go along for a coffee and a chat with folks in similar situations, it relieves the stress and strain knowing that you are not the only ones, they also offered the carers the chance for massages etc. Is your mum computer literate? If so, I would be more than happy to correspond with her either here or privately. There's an old BT advert in my head "it's good to talk" (yeah, sorry!), but it may be very cliche but it is also very true. Let us know how things go tonight. Take care of yourself now David. Alayne > > It is good to read that your mother and John managed to get away for a > > holiday, it will have given them a chance to get away from it all for [quoted text clipped - 8 lines] > he'll eat chocolate non stop until it's taken away from him, and he gets > cravings for full sugar soft drinks. I don't know what's caused that. When people slow down or stop drinking they crave the sugar from the alcohol. Wine has lots of sugar. Most people will suck on hard candy. My dad died of alcoholism and he chewed black licorice.Just another addiction. Lily Mae > > There is lots of support available to your family David. Firstly > > there are Macmillan nurses (who provide emotional and practical [quoted text clipped - 43 lines] > Thank you. I've got quite a bit out of this group - it makes you realise > we're not the only people this has happened or is happening to. > Just wondered how things were going with you guys? And how you are > coping with being care givers. > > Hugs all around Thanks for the hug - sure can use 'em right now. After making an almost full recovery from the brain surgery, Dad's still in the hospital with the pancreatitis. It's been a month now! He was admitted with pancreatitis, wound up with pneumonia and a huge amount of edema, got that pretty well resolved, was released to rehab for a whole 30 hours before being readmitted via the ER (blood clots in his bladder completely stopped things up). More pancreatitis, more pain, and very little food. All the while he was continuing with radiation treatments which probably didn't help matters. So after a month of this crap, he's malnourished and in more pain than ever. The second endoscopic procedure (last week) determined he has stones impacted in his common bile duct - but...he's too weak for surgery, which is what the surgeon initially wanted to do (nothing heals like cold hard steel). So they FINALLY decided to start TPN (getting all his food via IV), something they refused to consider three weeks ago. His liver enzymes (and pain) kept getting worse, so today they did this percutaneous somethingorother where they go in through his rib cage with a tube to drain the bile stopped up in his liver. Tomorrow, hopefully, they'll use the endoscope (I think he should have his own engraved copy by now) to follow the guide wire they left in and FISH OUT THE DAMN STONES! We were getting the uneasy feeling that this would be "the end", a surprising denouement for a guy with brain cancer. I hope, though, that he's finally turned around and will recover from this. Frustrating that he has to spend so much of what little time is left lying in a hospital bed. Beth > > Just wondered how things were going with you guys? And how you are > > coping with being care givers. [quoted text clipped - 5 lines] > > Beth Oh Beth, I am sorry to read that your dad has had such a tough time of things of late, you would think that a GBM would be enough of a challenge without all the other complications. I sure hope that things improve for you and your family rather soon, it sounds like you have already been put through the ringer. Hugs to you and your family Alayne |
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.