It has definitely been a more upbeat day today. Yesterday, at around 1.30pm, I put TWO pain patches on Husband (1 being a replacement for an existing patch, and the second being a new patch). Basically that means the pain patch dose has been doubled. So, the second pain patch would only have come into affect at 1.30am today, so he did have to continue the morphine last night, but the question was.... would he still need any morphine today, AFTER the 2nd pain patch had kicked in?
And, the answer is - so far, NO!!! NOT A SINGLE DROP.
And, to add to the cheerful and upbeat nature of the day, the Neurontin (For the nerve pain in the arm) has finally built up sufficiently in his system to start taking affect. Today he has been able to get up and sit for his meals WITHOUT being in absolute agony because of his arm :-D.
The hospice doctor also visited today - came by at 11.30am and spent an hour with us. After which he was definitely of the opinion that if we can get the pain completely under control then Husband could have a very good quality of life indeed. In addition, he is going to get a physiotherapist to come see Husband, to get him to start exercising (YIPPEE!!), and he gave me a prescription for something that should bring down the hallucinations that Husband has (pharmacies don't sell this particular drug, but I might be able to get it from a hospital pharmacy).
My sister and her boys turned up just before 1pm, with lunch for us all... and then sis drove me to UMSC to pick up the DVD and report from the CT Scan that Husband had yesterday. They had told me to come any time after 1pm, and I was there at 2pm, and, GUESS WHAT - the DVD and the report were NOT there! Nobody knew where it was, nobody knew anything about it... and, MAN, I was SO pissed off I HIT THE ROOF - told them that if they cannot get me the report then give me back my money - they were the ones who told me to come, and they can't even tell me where the DVD and the report ARE!! There was only ONE person (a lady by the name of Zarina) who tried very hard to help me, calling up everywhere to pin point the location of the DVD and the report, and once she found it, she tried to get someone to pick it up and bring it over, and had absolutely NO success. I was FURIOUS!! Told them to deliver it to my house, and walked out. They JUST called me (9pm!!!) and told me they have the CD and asked if I want to go and collect it NOW! Phew.. the cheek of it all. Anyway, my sister will pick me up tomorrow, any time after 2pm, and take me back to UMSC to get the DVD and report.... And if you are wondering why I can't just drive myself there - it is because there is NO PARKING available, so it is easier if someone waits in the car, and I run in to get the stuff. Let's hope I have no reason to blow up tomorrow as well!
Anyway, from my blow-up session at UMSC, we rushed straight back home, as I was expecting two of our good friends to come for tea. That was a great session too - lots of food (which STILL isn't finished), and great company. As always, we laughed a lot, talked a lot, ate a lot, and now I am absolutely STUFFED to the eyeballs :-p. Husband was actually feeling strong enough to get out of bed and come and lie down on the sofa to join us, which was nice, for a change!
Eleen left this evening. Went for a quick dinner, and then she hopped off back to SG. She should be back again in 3 weeks, but is more likely to stay in a hotel next time as she is actually coming back for a work-related workshop and will take the opportunity to continue house hunting. I think she has pretty much decided to look for somewhere in Mont'Kiara - as it is definitely a nice place to stay :-D.
So folks, all your prayers for the pain to be controlled may finally be showing results. Please don't stop though, as you can never tell what is going to happen, so just keep the prayers going that the pain will continue to be under control, and that Ken will get stronger and get back some of his quality of life.
Till next time everyone, stay safe, stay HEALTHY!
Wednesday, December 30, 2009
Tuesday, December 29, 2009
CT Scan "sort of" done.
Today has been a so-so kind of day. Not tooooo bad, and not tooooo great either. No puking - which is good (!) - but then Husband was not able to actually eat much either, since he had to fast from 10.30am onwards, for the CT Scan that he had to do this afternoon. I asked them why he had to fast - since the scan was for the upper (cervical) spine and the left arm, shoulder and armpit, NOT his stomach or intestines - but they just said he had to fast! So, OK, had breakfast at 8.30am, had some of his Ensure protein drink in between, and then, from 10.30am onwards, nothing. In some ways, having NOTHING in his stomach seems to be easier for him to handle :-(.
Around noon, my friend Eleen, from Singapore, had turned up at our place, as she is spending one night with us while she meets up with her real estate agent to look for places to stay in KL - as she is being transferred to KL to take over the customer care centre for her organisation. By 2.30pm my sister had turned up, to pick up Husband and myself, to go to UMSC for the CT Scan. She dropped us off by 3pm and then she went to run some errands while Husband and I went in for the scan. We did not have to wait for long (luckily). First they had to stick an IV port into one of his veins (crook of left elbow) then they took him into the scan room, and kicked me out .... sigh. Waited just outside the door, and after a while could hear lots of noise and voices in there, and next thing you know, they opened the door, pulled me in, and asked me if I had brought a spare t-shirt for him! Turns out that the tube carrying the contrast dye (which was supposed to go into Husband via the IV port) had leaked! The dye had leaked onto the platform that Husband was lying on, and got all over his back! I didn't have a spare t-shirt but we HAD brought along a wind-cheater type of jacket - so was able to get him out of the wet t-shirt and into the jacket. He REFUSED to try again, but luckily the radiologist said that they had got a fairly good scan, so that should be sufficient.
We could have waited 40 minutes for the image and the report, but there was no way that Husband could have sat for that long, so, since my sister was there already (having run all her errands), we decided we might as well go home so Husband can rest - and I will go back tomorrow to pick up the report and images (on DVD no less!).
The DVD is then to be handed to the hospice doctor when he visits so that they can try and identify WHERE the pain in the arm is originating from. In addition, our lovely pain management specialist, while on her way back to KL from her holiday, had also called the hospice doctor, and highlighted Husband's situation to him, and requested that he visit Husband asap to further evaluate the overall pain situation that Husband is in, to see what more can be done to alleviate the pain - especially since the pain in the lower back seems to be intensifying! At her recommendation, since the pain patch had to be changed today anyway, I put two of the pain patches on - though it will take 12 hours from time of application for the 2nd pain patch to kick in - which would bring us to around 2am on Wednesday. Let's hope the double patch WORKS.. because it is HORRIBLE HORRIBLE HORRIBLE to see Husband suffering so much! :-(.
So, what else is happening? Well, Eleen will be with us tomorrow as well - more house hunting for her to do. I have to go pick up the CT Scan report at 1pm tomorrow. My sister and two of my very dear friends are coming for tea at 3.30pm. AND, last but not least, hopefully the hospice people will be here tomorrow evening too!
That's it for now. Please do continue to keep Husband in your thoughts and prayers, that the pain can be managed and brought under control and he can start gaining some strength!
Until next time, stay safe, stay HEALTHY!
Around noon, my friend Eleen, from Singapore, had turned up at our place, as she is spending one night with us while she meets up with her real estate agent to look for places to stay in KL - as she is being transferred to KL to take over the customer care centre for her organisation. By 2.30pm my sister had turned up, to pick up Husband and myself, to go to UMSC for the CT Scan. She dropped us off by 3pm and then she went to run some errands while Husband and I went in for the scan. We did not have to wait for long (luckily). First they had to stick an IV port into one of his veins (crook of left elbow) then they took him into the scan room, and kicked me out .... sigh. Waited just outside the door, and after a while could hear lots of noise and voices in there, and next thing you know, they opened the door, pulled me in, and asked me if I had brought a spare t-shirt for him! Turns out that the tube carrying the contrast dye (which was supposed to go into Husband via the IV port) had leaked! The dye had leaked onto the platform that Husband was lying on, and got all over his back! I didn't have a spare t-shirt but we HAD brought along a wind-cheater type of jacket - so was able to get him out of the wet t-shirt and into the jacket. He REFUSED to try again, but luckily the radiologist said that they had got a fairly good scan, so that should be sufficient.
We could have waited 40 minutes for the image and the report, but there was no way that Husband could have sat for that long, so, since my sister was there already (having run all her errands), we decided we might as well go home so Husband can rest - and I will go back tomorrow to pick up the report and images (on DVD no less!).
The DVD is then to be handed to the hospice doctor when he visits so that they can try and identify WHERE the pain in the arm is originating from. In addition, our lovely pain management specialist, while on her way back to KL from her holiday, had also called the hospice doctor, and highlighted Husband's situation to him, and requested that he visit Husband asap to further evaluate the overall pain situation that Husband is in, to see what more can be done to alleviate the pain - especially since the pain in the lower back seems to be intensifying! At her recommendation, since the pain patch had to be changed today anyway, I put two of the pain patches on - though it will take 12 hours from time of application for the 2nd pain patch to kick in - which would bring us to around 2am on Wednesday. Let's hope the double patch WORKS.. because it is HORRIBLE HORRIBLE HORRIBLE to see Husband suffering so much! :-(.
So, what else is happening? Well, Eleen will be with us tomorrow as well - more house hunting for her to do. I have to go pick up the CT Scan report at 1pm tomorrow. My sister and two of my very dear friends are coming for tea at 3.30pm. AND, last but not least, hopefully the hospice people will be here tomorrow evening too!
That's it for now. Please do continue to keep Husband in your thoughts and prayers, that the pain can be managed and brought under control and he can start gaining some strength!
Until next time, stay safe, stay HEALTHY!
Monday, December 28, 2009
I HATE SEEING HUSBAND IN PAIN!! :-(
As of this afternoon the pain in Husband's back seems to be intensifying. Even with a 5ml dose of liquid morphine, the pain is stabbing! It is awful, truly truly awful, to see Husband suffering like this. He is tired, weak, totally has no appetite (though he WILL eat when I put something simple in front of him - like oats or rice porridge, cream of chicken soup, etc - nothing fancy, nothing strong tasting), has no energy to move around, takes all his energy just to have a shower!
Tomorrow I am taking him (with my sisters help) for a CT scan for the upper spine (cervical vertebrae), left arm, left shoulder, to see what is causing the problem of pain in the left arm. This is, of course, assuming he is strong enough to GO for the CT Scan in the first place.
Please continue to keep Husband in your thoughts and prayers. It is so so depressing to see him suffer like this.
Till next time, stay safe, stay HEALTHY!
Tomorrow I am taking him (with my sisters help) for a CT scan for the upper spine (cervical vertebrae), left arm, left shoulder, to see what is causing the problem of pain in the left arm. This is, of course, assuming he is strong enough to GO for the CT Scan in the first place.
Please continue to keep Husband in your thoughts and prayers. It is so so depressing to see him suffer like this.
Till next time, stay safe, stay HEALTHY!
Sunday, December 27, 2009
Strange day #2
It has been, in a lot of ways, a very calm day. Husband has been able to eat a bit - oats porridge for breakfast, rice porridge for lunch, and oats porridge again for dinner. He did try to eat his usual boiled egg for 2nd breakfast, but today his taste buds decided that eggs taste horrible and he just could not eat it at all... so it ended up as me eating the egg instead!
My parents dropped the maid (her name is Sree) off with me this morning, and she did a lovely job of cleaning the house for me, and when she finished that, while waiting for my parents to come and pick her up, she got so bored she asked if it was OK to iron the clean clothes that were in my little ironing room! Not a lot (as I always iron each time the clothes are dry, as I don't like piling them up!), but I definitely appreciated her offer.
My parents turned up at 3.30pm, spent some time with Husband and me - with my Dad praying for Husband (after asking his permission!) and me. After which we left Husband to rest, while I got some tea and tid-bits on the table for my parents. We sat and chatted for a while, then they said their good-byes to both of us, and took Sree and headed home.
The pain patch is not working as well as it should on Husband, as he still has breakthrough pain practically every 4 to 5 hours, which means he needs extra meds to control the pain... so I have written to the pain management specialist to get her advice. The slow release morphine tablets worked a lot better BUT due to the gastro paresis was (1) taking a long time to get into the system after each dose and (2) was in constant danger of being puked up, which would have nullified the benefits of the pills! My brother had given me some new meds for Ken, something called Ganaton, which is to assist in the 'motility' of the stomach and help in digestion. So far, since starting it on Thursday night, Husband has only puked once... which is pretty good for a change. Maybe if the Ganaton really helps in digestion, then we may be able to switch back to the slow release pills. Will wait for the pain management doctor's advice - hopefully by tomorrow.
That's about it for now. Please continue to pray for Husband that the pain should be brought under control so he can start LIVING life again - so that he can, as the doctors keep saying, have some "quality of life", not this constant, unending pain and discomfort.
Till next time, stay safe, stay HEALTHY!
My parents dropped the maid (her name is Sree) off with me this morning, and she did a lovely job of cleaning the house for me, and when she finished that, while waiting for my parents to come and pick her up, she got so bored she asked if it was OK to iron the clean clothes that were in my little ironing room! Not a lot (as I always iron each time the clothes are dry, as I don't like piling them up!), but I definitely appreciated her offer.
My parents turned up at 3.30pm, spent some time with Husband and me - with my Dad praying for Husband (after asking his permission!) and me. After which we left Husband to rest, while I got some tea and tid-bits on the table for my parents. We sat and chatted for a while, then they said their good-byes to both of us, and took Sree and headed home.
The pain patch is not working as well as it should on Husband, as he still has breakthrough pain practically every 4 to 5 hours, which means he needs extra meds to control the pain... so I have written to the pain management specialist to get her advice. The slow release morphine tablets worked a lot better BUT due to the gastro paresis was (1) taking a long time to get into the system after each dose and (2) was in constant danger of being puked up, which would have nullified the benefits of the pills! My brother had given me some new meds for Ken, something called Ganaton, which is to assist in the 'motility' of the stomach and help in digestion. So far, since starting it on Thursday night, Husband has only puked once... which is pretty good for a change. Maybe if the Ganaton really helps in digestion, then we may be able to switch back to the slow release pills. Will wait for the pain management doctor's advice - hopefully by tomorrow.
That's about it for now. Please continue to pray for Husband that the pain should be brought under control so he can start LIVING life again - so that he can, as the doctors keep saying, have some "quality of life", not this constant, unending pain and discomfort.
Till next time, stay safe, stay HEALTHY!
Saturday, December 26, 2009
It's been a weird day today
Started off pretty bad, as Husband just could not eat ANYTHING this morning. Subsisted on Ensure protein drink and a bit of water, and his meds, till about 3pm... at which time his gastric pains kicked in, so he had to eat something. Had rice porridge at 3pm, 5pm and again at 9.30pm!! And had oats porridge at 6pm. In between, had the Ensure too. So, I guess the day finished on a slightly better note than it started.
Had my bro and sis-in-law and the kids over for breakfast this morning. Peng and I did the breakfast prep, and the kids laid the table, made the toast and coffee, and did the washing up. Verra useful having grown up nieces and nephews to do the scut work :-). They went shopping after breakfast, and Peng went along with them. She was back by noon though, and soon after that two of my very good friends turned up - Rini and TT. We haven't met since Husband's birthday in June, so it was so good to be able to catch up with them. Ordered take-away North Indian food from Khaana Peena (Mont'Kiara Plaza), and just sat and yakked and ate too much! They were hoping to have the chance to say Hi to Husband, but he just wasn't up to it, so they had to make do with just me :-p.
This evening I had arranged to meet with some good friends for dinner at Souled Out - my favourite restaurant in Desa Sri Hartamas. It is "favourite" not just for its excellent food, but also because it is literally just across the road from where we live, so it is easy for me to get back home quickly in case of need. Was hoping Husband would be strong enough to join us, but he was not - so I went with Peng and we had Molly, Jon, Jodi and Koshu joining us. Efy and Sianny could not make it, as they could not get a cab from their place - which is not surprising given the heavy rain of earlier. Anyway, a good evening was had by all! Efy, Sianny, we will have to wait till you guys come back from Indonesia before we meet - so we shall see you NEXT YEAR :-D. Anyway, got back home by 9.30, just in time to give Husband his last round of rice porridge for the day, and dose him up on his meds. He is now sleeping.
Peng is going back home to SG tomorrow, and I am going to miss her, but her work (AND Tony!) are pulling her back to SG, and there is no fighting that double pull :-D.
Well folks, please please continue to keep Husband in your thoughts and prayers. He is still very weak, and he still has a lot of pain in his left arm. Please pray that the Neurontin will soon take effect and control the pain in his arm, so that he can start sitting up and moving around more, and gaining in strength!
Till next time, stay safe, stay HEALTHY!
Had my bro and sis-in-law and the kids over for breakfast this morning. Peng and I did the breakfast prep, and the kids laid the table, made the toast and coffee, and did the washing up. Verra useful having grown up nieces and nephews to do the scut work :-). They went shopping after breakfast, and Peng went along with them. She was back by noon though, and soon after that two of my very good friends turned up - Rini and TT. We haven't met since Husband's birthday in June, so it was so good to be able to catch up with them. Ordered take-away North Indian food from Khaana Peena (Mont'Kiara Plaza), and just sat and yakked and ate too much! They were hoping to have the chance to say Hi to Husband, but he just wasn't up to it, so they had to make do with just me :-p.
This evening I had arranged to meet with some good friends for dinner at Souled Out - my favourite restaurant in Desa Sri Hartamas. It is "favourite" not just for its excellent food, but also because it is literally just across the road from where we live, so it is easy for me to get back home quickly in case of need. Was hoping Husband would be strong enough to join us, but he was not - so I went with Peng and we had Molly, Jon, Jodi and Koshu joining us. Efy and Sianny could not make it, as they could not get a cab from their place - which is not surprising given the heavy rain of earlier. Anyway, a good evening was had by all! Efy, Sianny, we will have to wait till you guys come back from Indonesia before we meet - so we shall see you NEXT YEAR :-D. Anyway, got back home by 9.30, just in time to give Husband his last round of rice porridge for the day, and dose him up on his meds. He is now sleeping.
Peng is going back home to SG tomorrow, and I am going to miss her, but her work (AND Tony!) are pulling her back to SG, and there is no fighting that double pull :-D.
Well folks, please please continue to keep Husband in your thoughts and prayers. He is still very weak, and he still has a lot of pain in his left arm. Please pray that the Neurontin will soon take effect and control the pain in his arm, so that he can start sitting up and moving around more, and gaining in strength!
Till next time, stay safe, stay HEALTHY!
Friday, December 25, 2009
Xmas Eve family get together, and a very tired Husband!
We didn't leave home to head to PJ till about 7.50pm last night... Took the Penchala tunnel route because earlier, when I had dropped my Mum back at PJ, the Damansara toll was backed up all the way to Bangsar, and I did not want to sit in THAT jam with Husband in the car! Via the Penchala link, onto the LDP, it was also jammed, but it still took less than 30 minutes to get to our PJ house. If we had gone via D'sara, it would have taken us 30 minutes just to get TO the toll, and then another 20 minutes to get to the turn onto the LDP, and then another 20 minutes to get to our house!! Ain't it wonderful - paying toll for the "privilege" of being stuck in a traffic jam for hours on end???
Got to our house, Husband had to go lie down straight away. Luckily my parents bedroom is downstairs, so he was able to lie down there, instead of having to make his way up the stairs to the bedroom! Gave him a dose of liquid morphine before he lay down as he was hurting all over. The pain patch does not work as well as the morphine tablets do, so I have to check with the pain management doctor whether I can replace it every 2 days, or maybe use 2 at one time. My poor Husband :-(.
Xmas Eve dinner was pretty darned good. Roast leg of lamb with roast potatoes, beef cutlets, fried chicken, beef stew, potato bread, salad - every single item cooked from scratch by my sis (lamb/potato), my mum (cutlets/chicken/salad), me (stew), sis-in-law (bread)... My mum had made chicken soup for Husband, but he could not even eat that, as he finds everything just too strong tasting nowadays. The only things he has been able to eat have been oats porridge and rice porridge, both of which are pretty mild flavoured. He has not even been able to eat the chicken stew I made for him a few days ago. Ended up wasted, cos I don't eat stew anyway :-p...
We took a break after dinner and Peng and I walked over to my sisters house (just 3 houses away) with her to check out her new kitchen - very nice indeed, and then we made the kids really happy by having the present giving session. Which was then followed by an over abundance of desserts --> apple pie (made by bro and sis-in-law), Xmas pudding (made by bro), Xmas cake (made by sis-in-law), mince pies (made by sis), choc chip cookies (made by sis). Husband got up from bed and came and lay down on the sofa to keep us company during the present giving session, but he had to go and lie down again after that.
And now it is Xmas day. We were supposed to go to PJ for breakfast and lunch, following our usual Xmas style... but Husband is definitely not up to another outing today, so it is going to be a quiet Xmas at home. Will go to the deli later (just round the corner) to get some of their yummy breakfast stuff... to cook for breakfast tomorrow, as my bro and sis-in-law and the kids are coming over for breakfast...
Peng is catching up on her work - as her office is in CN and they don't break for Xmas!!
Please continue to keep Husband in your thoughts and prayers, as he is really tired, in pain, and exhausted, and needs more strength, and less pain.
Till next time, stay safe, stay HEALTHY!
Got to our house, Husband had to go lie down straight away. Luckily my parents bedroom is downstairs, so he was able to lie down there, instead of having to make his way up the stairs to the bedroom! Gave him a dose of liquid morphine before he lay down as he was hurting all over. The pain patch does not work as well as the morphine tablets do, so I have to check with the pain management doctor whether I can replace it every 2 days, or maybe use 2 at one time. My poor Husband :-(.
Xmas Eve dinner was pretty darned good. Roast leg of lamb with roast potatoes, beef cutlets, fried chicken, beef stew, potato bread, salad - every single item cooked from scratch by my sis (lamb/potato), my mum (cutlets/chicken/salad), me (stew), sis-in-law (bread)... My mum had made chicken soup for Husband, but he could not even eat that, as he finds everything just too strong tasting nowadays. The only things he has been able to eat have been oats porridge and rice porridge, both of which are pretty mild flavoured. He has not even been able to eat the chicken stew I made for him a few days ago. Ended up wasted, cos I don't eat stew anyway :-p...
We took a break after dinner and Peng and I walked over to my sisters house (just 3 houses away) with her to check out her new kitchen - very nice indeed, and then we made the kids really happy by having the present giving session. Which was then followed by an over abundance of desserts --> apple pie (made by bro and sis-in-law), Xmas pudding (made by bro), Xmas cake (made by sis-in-law), mince pies (made by sis), choc chip cookies (made by sis). Husband got up from bed and came and lay down on the sofa to keep us company during the present giving session, but he had to go and lie down again after that.
And now it is Xmas day. We were supposed to go to PJ for breakfast and lunch, following our usual Xmas style... but Husband is definitely not up to another outing today, so it is going to be a quiet Xmas at home. Will go to the deli later (just round the corner) to get some of their yummy breakfast stuff... to cook for breakfast tomorrow, as my bro and sis-in-law and the kids are coming over for breakfast...
Peng is catching up on her work - as her office is in CN and they don't break for Xmas!!
Please continue to keep Husband in your thoughts and prayers, as he is really tired, in pain, and exhausted, and needs more strength, and less pain.
Till next time, stay safe, stay HEALTHY!
Thursday, December 24, 2009
So far, so good
Well, maybe it is a little bit too early to say that - it is only 8.40am. But Husband has taken the new anti-vomit pills sent by the doctor, has had his breakfast, has NOT puked YET! He is lying down now, trying to catch his breath.... as today is going to be a tiring day for him, and a busy one for me.
Today, for a change, I am going to take some "me" time (Thanks for the reminder Jo!!). Even as I write this, Hwee Peng is on her way from good ol' Sinjapoh, being driven up by her sister and bro-in-law, who are coming to KL for Xmas with their 2 girls. Hopefully she will be here by 10am!! WHY that specific time? Because I have booked appointments for manicure/pedicure for her, and pedicure for my sister and myself, at 11am, in Bangsar Village II (Chic Nail Spa by Soong Ai Ling). It is my favourite nails place, as they do a very good job - best that I have found in KL anyway!
Following that, my sister will head home (she is cooking a roast leg of lamb for Xmas Eve family dinner!!!), while I will go and cut my hair (looks a bit like a birds nest right now. If I am not careful, I might HAVE birds nesting in there :-p ), and colour it too. Peng will go shopping while I do that.... after which we head home and rest up, before heading to PJ for our family dinner tonight (Peng being an honorary member of our family :-D ).
And, don't worry, Husband will NOT be left on his own. My mum is turning up here at 10am (being dropped off by my sister on her way to BV II) to keep Husband company, and make sure he eats lunch and is generally kept company. Once I get back home this afternoon, I will take my mum back to PJ.
What else is new? We applied the first pain patch around 2pm yesterday, and it is supposed to be effective for 3 days - so the next pain patch gets applied at around 2pm on Saturday. Of course, the first patch would have taken 12 hours, from time of application, to take effect, so yesterday we had to continue with the liquid morphine at 3pm, 7pm and 11pm. Today onwards however, unless Husband has extreme breakthrough pain, there should be no need for the liquid morphine on a regular basis. He also started on the Neurontin (for the arm pain) last night, though that will take a few days for it to take affect. Till then, it will be hard for him to sit up on a regular basis, as it more bearable for him when he lies down, and quite painful even when he sits up for just 10 minutes.
I have to head for the Mont'Kiara evening market around 4.30pm, to get my usual apples, oranges, banana's (my daily breakfast!), after which we will get all prettified before we head over to PJ for our Xmas Eve family dinner! It will be a completely different menu from our usual Xmas Eve dinners. Normally we have Indian food - veg beriyani, chicken curry, raita, some veg or other, dry beef curry, beef/potato cutlets, etc, etc, etc. This time we are having fried chicken (done by my mum), roast leg of lamb (done by my sister), beef stew (done by me), salad, and other odds and ends... followed by apple pie (done by my brothers' 2 daughters, following their father's recipe, and using more filling than pie crust!!), mince pies (done by my brother and my sister), and Xmas cake (done by my sis-in-law). Let's just say that we will be absolutely STUFFED TO THE GILLS by the time we finish.
Of course, we always drag out dinner as long as possible, as it drives the kids NUTS having to wait till after dinner to open their presents :-D. Where's the fun if we don't make them wait a while, right?
That's the story for now. I am sure other things will happen during the course of the day to either force change of plans, or just generally add to the fun of Xmas! But, as always, please continue to keep Husband in your thoughts and prayers, that he will get past the vomiting, that the Neurontin will work fast for his arm, and that he will be able to build his strength up steadily, so he can get back to somewhat normal life!
Till next time, stay safe, stay HEALTHY!
Today, for a change, I am going to take some "me" time (Thanks for the reminder Jo!!). Even as I write this, Hwee Peng is on her way from good ol' Sinjapoh, being driven up by her sister and bro-in-law, who are coming to KL for Xmas with their 2 girls. Hopefully she will be here by 10am!! WHY that specific time? Because I have booked appointments for manicure/pedicure for her, and pedicure for my sister and myself, at 11am, in Bangsar Village II (Chic Nail Spa by Soong Ai Ling). It is my favourite nails place, as they do a very good job - best that I have found in KL anyway!
Following that, my sister will head home (she is cooking a roast leg of lamb for Xmas Eve family dinner!!!), while I will go and cut my hair (looks a bit like a birds nest right now. If I am not careful, I might HAVE birds nesting in there :-p ), and colour it too. Peng will go shopping while I do that.... after which we head home and rest up, before heading to PJ for our family dinner tonight (Peng being an honorary member of our family :-D ).
And, don't worry, Husband will NOT be left on his own. My mum is turning up here at 10am (being dropped off by my sister on her way to BV II) to keep Husband company, and make sure he eats lunch and is generally kept company. Once I get back home this afternoon, I will take my mum back to PJ.
What else is new? We applied the first pain patch around 2pm yesterday, and it is supposed to be effective for 3 days - so the next pain patch gets applied at around 2pm on Saturday. Of course, the first patch would have taken 12 hours, from time of application, to take effect, so yesterday we had to continue with the liquid morphine at 3pm, 7pm and 11pm. Today onwards however, unless Husband has extreme breakthrough pain, there should be no need for the liquid morphine on a regular basis. He also started on the Neurontin (for the arm pain) last night, though that will take a few days for it to take affect. Till then, it will be hard for him to sit up on a regular basis, as it more bearable for him when he lies down, and quite painful even when he sits up for just 10 minutes.
I have to head for the Mont'Kiara evening market around 4.30pm, to get my usual apples, oranges, banana's (my daily breakfast!), after which we will get all prettified before we head over to PJ for our Xmas Eve family dinner! It will be a completely different menu from our usual Xmas Eve dinners. Normally we have Indian food - veg beriyani, chicken curry, raita, some veg or other, dry beef curry, beef/potato cutlets, etc, etc, etc. This time we are having fried chicken (done by my mum), roast leg of lamb (done by my sister), beef stew (done by me), salad, and other odds and ends... followed by apple pie (done by my brothers' 2 daughters, following their father's recipe, and using more filling than pie crust!!), mince pies (done by my brother and my sister), and Xmas cake (done by my sis-in-law). Let's just say that we will be absolutely STUFFED TO THE GILLS by the time we finish.
Of course, we always drag out dinner as long as possible, as it drives the kids NUTS having to wait till after dinner to open their presents :-D. Where's the fun if we don't make them wait a while, right?
That's the story for now. I am sure other things will happen during the course of the day to either force change of plans, or just generally add to the fun of Xmas! But, as always, please continue to keep Husband in your thoughts and prayers, that he will get past the vomiting, that the Neurontin will work fast for his arm, and that he will be able to build his strength up steadily, so he can get back to somewhat normal life!
Till next time, stay safe, stay HEALTHY!
Wednesday, December 23, 2009
We feel like yo-yo's. UP... DOWN... UP... DOWN
...and today is a bit on the down side. Started with Husband puking up his breakfast - yes, first time in a while, took anti-vomit pills, waited half hour, had his breakfast (small portion of quaker oats), and promptly puked it all up... sigh.... Back into bed to rest... so I went swimming again (wow, 2 days in a row.. I MUST be going crazy!!!).
Off to the supermarket after that, while my Dad went to the hospital to get meds from the pain specialist for Husband. My poor Dad.. got there at 9.15am, and probably has only JUST (it is currently 1.05pm) left the hospital to come back here. Doctor giving us the pain patch again (in addition to the Neurontin and the Kytril), at the correct dosage (based on the 180mg morphine tablets + 15ml liquid morphine that Husband takes daily), with instructions to apply it as soon as it gets to us, and then, since the patch, on first application, takes 12 hours to take effect, I have to keep Husband dosed with 5ml of liquid morphine every 4 hours. Once the patch has kicked in, then only give him the liquid morphine WHEN there is breakthrough pain. The patch is supposed to remain in place for 72 hours, and then a new one applied.
Part of the reason for switching to patches is the concern that when Husband pukes, especially soon after taking his pain meds, he could be puking up the meds too! The patch, on the other hand, does not touch the gastric system, being absorbed into the bloodstream, via the skin. Of course, it is also good to reduce the number of PILLS he has to take!! Let's just hope it works better this time round than our first attempt.
We start on the Neurontin tonight, and hopefully that will help with the arm pain SOON... though I have been told it takes time to take effect - a few days usually.
Well, that's it for now. Please continue to keep Husband in your thoughts and prayers.... that all these meds WORK and he can get stronger and get up and about.
Till next time, stay safe, stay HEALTHY!
Off to the supermarket after that, while my Dad went to the hospital to get meds from the pain specialist for Husband. My poor Dad.. got there at 9.15am, and probably has only JUST (it is currently 1.05pm) left the hospital to come back here. Doctor giving us the pain patch again (in addition to the Neurontin and the Kytril), at the correct dosage (based on the 180mg morphine tablets + 15ml liquid morphine that Husband takes daily), with instructions to apply it as soon as it gets to us, and then, since the patch, on first application, takes 12 hours to take effect, I have to keep Husband dosed with 5ml of liquid morphine every 4 hours. Once the patch has kicked in, then only give him the liquid morphine WHEN there is breakthrough pain. The patch is supposed to remain in place for 72 hours, and then a new one applied.
Part of the reason for switching to patches is the concern that when Husband pukes, especially soon after taking his pain meds, he could be puking up the meds too! The patch, on the other hand, does not touch the gastric system, being absorbed into the bloodstream, via the skin. Of course, it is also good to reduce the number of PILLS he has to take!! Let's just hope it works better this time round than our first attempt.
We start on the Neurontin tonight, and hopefully that will help with the arm pain SOON... though I have been told it takes time to take effect - a few days usually.
Well, that's it for now. Please continue to keep Husband in your thoughts and prayers.... that all these meds WORK and he can get stronger and get up and about.
Till next time, stay safe, stay HEALTHY!
Tuesday, December 22, 2009
The hospice nurse came visiting today
A nice young lady, Faezah - very well spoken, quiet, articulate, and seemed to know what she was talking about. Well, she is a trained nurse, so that helps too :-D. The hospice is an NGO, their services are provided free, and they are available for medical assistance 24 hours daily! Very impressive indeed.
For now, we are just following the meds as prescribed by our pain management specialist, though Faezah did propose discussing some alternatives with the doctor when we next see her (next appointment 6th Jan 2010). So, let's see how that goes.
The immediate plan of action, to bring the pain in the arm under control is, as mentioned in earlier posts, the med called Neurontin (Gabapentin). Starting tomorrow, once a day (at night). Faezah suggested that if the pain is brought under control within a week with just the once a day dosage, then we should keep it at once a day, only increasing if the pain subsequently increases. Good advice!
Today has actually been an OK day, though it didn't start off too well, as Husband was out of bed at 6am to puke! Didn't have a lot to bring up though, so a lot of discomfort for very little output. Back to bed after that, only to be woken up be me at 7am, to take his meds, followed by 7.30am for his breakfast. After that he went back to bed, while I went and did the ironing. Around 9am I suddenly had the urge to go swimming - so while my "WILL" power was stronger than my "WONT" power, I quickly got changed and went down and SWAM ONE WHOLE KILOMETRE(!), ie, 40 lengths of a 25m pool :-D. After that, back upstairs, 2nd breakfast for Husband (soft boiled egg), then shower time, and then on to cooking for myself (for a change!). Took delivery of the Xmas pressie that I had ordered for my Mum, then chucked in a pile of laundry into the washing machine, got lunch for Husband all sorted, hung up the washed clothes and just when I thought I could put my feet up the Hospice nurse (as mentioned above) turned up, and was with us for almost 2 hours.
During that time our good friend Koshu came, with her business partner, who had returned from SG with a carton of Pink Dolphin peach water - so they came to say Hello and to deliver the water... a few bottles of which are already in the fridge, to be cooled down for Husband to imbibe.
So, it is now past 4pm, and it has been a BUSY DAY! I still have to finish wrapping my Mum's pressie, wash up the drinks glasses used by our visitors, do the filing of our paid bills and other correspondence, and THEN I can put my feet up.
That's it for now folks. Please keep Husband in your thoughts and prayers that there should only be improvement from now onwards, and that he is now on an UP-cycle.
Till next time, stay safe, stay HEALTHY!
For now, we are just following the meds as prescribed by our pain management specialist, though Faezah did propose discussing some alternatives with the doctor when we next see her (next appointment 6th Jan 2010). So, let's see how that goes.
The immediate plan of action, to bring the pain in the arm under control is, as mentioned in earlier posts, the med called Neurontin (Gabapentin). Starting tomorrow, once a day (at night). Faezah suggested that if the pain is brought under control within a week with just the once a day dosage, then we should keep it at once a day, only increasing if the pain subsequently increases. Good advice!
Today has actually been an OK day, though it didn't start off too well, as Husband was out of bed at 6am to puke! Didn't have a lot to bring up though, so a lot of discomfort for very little output. Back to bed after that, only to be woken up be me at 7am, to take his meds, followed by 7.30am for his breakfast. After that he went back to bed, while I went and did the ironing. Around 9am I suddenly had the urge to go swimming - so while my "WILL" power was stronger than my "WONT" power, I quickly got changed and went down and SWAM ONE WHOLE KILOMETRE(!), ie, 40 lengths of a 25m pool :-D. After that, back upstairs, 2nd breakfast for Husband (soft boiled egg), then shower time, and then on to cooking for myself (for a change!). Took delivery of the Xmas pressie that I had ordered for my Mum, then chucked in a pile of laundry into the washing machine, got lunch for Husband all sorted, hung up the washed clothes and just when I thought I could put my feet up the Hospice nurse (as mentioned above) turned up, and was with us for almost 2 hours.
During that time our good friend Koshu came, with her business partner, who had returned from SG with a carton of Pink Dolphin peach water - so they came to say Hello and to deliver the water... a few bottles of which are already in the fridge, to be cooled down for Husband to imbibe.
So, it is now past 4pm, and it has been a BUSY DAY! I still have to finish wrapping my Mum's pressie, wash up the drinks glasses used by our visitors, do the filing of our paid bills and other correspondence, and THEN I can put my feet up.
That's it for now folks. Please keep Husband in your thoughts and prayers that there should only be improvement from now onwards, and that he is now on an UP-cycle.
Till next time, stay safe, stay HEALTHY!
Monday, December 21, 2009
Gastroparesis! Huh?
I can almost hear you all say "Huh? What the heck is that?". Well here is the definition, as taken from Wikipedia:
"Gastroparesis, also called delayed gastric emptying, is a medical condition consisting of a paresis (partial paralysis) of the stomach, resulting in food remaining in the stomach for a longer period of time than normal. Normally, the stomach contracts to move food down into the small intestine for digestion. The vagus nerve controls these contractions. Gastroparesis may occur when the vagus nerve is damaged and the muscles of the stomach and intestines do not work normally. Food then moves slowly or stops moving through the digestive tract."
Did that help?
And if the food doesn't move down the stomach and into the intestinal tract, it sits there, builds up, and you constantly feel full, and since there is no peristalsis to push the food DOWN, then the slightest gag reflex brings it back up. It could happen for a number of reasons - three of which are all possible with Husband:
1) An operation in the abdominal region, which could damage the vagus nerve which controls peristalsis
2) Chemotherapy
3) Narcotic type drugs, eg, morphine.
Since this only really seems to have become a problem in the last 8 - 10 days, then #3 is the most likely cause.
The gastro doctor explained that normally the medication for this is basically just anti-vomit pills, like maxolon, or the uber-expensive Zofron. I told him our pain management doctor is going to give us another one, called Kytril, and he said, Yes, that would do just as well. My Dad is going to pick up the meds from her on Wednesday (with the Neurontin for the nerve pain in the arm).
I have written to the pain management doctor, to explain the situation to her, and see if she has any other recommendations to make.
Anyway, till this is sorted out, Husband is going to be living mostly on the Ensure protein drink (Thank goodness he likes it!), on rice porridge, and on oats porridge, though I have to make sure that both the porridges are nice and liquid. It also means soups are OK, and the soup from stews, but not carrots, which are harder to digest, or meats. I think potatoes, once they are nice and mushy as in any stew, are OK too. But, for sure, he has to take in very very small portions, and the minute his stomach tells him ENOUGH (and he seems to have learnt to recognise the signs), he has to stop immediately.
This also explains why it takes MUCH longer for the morphine pills to take effect. Usually, within half an hour of taking the pills, it has already taken effect. Now it takes 2 hours or so! To counteract that, when he takes the pills, I also have to give him some of the liquid morphine, as that gets absorbed very fast and can tide him over until such time as the pills kick in. Luckily NO MORE HALLUCINATIONS!
That's it for now. Please pray for Husband that the anti-vomit pills will work and that his stomach will get back to working again. OR that the pain management doctor can identify alternative medication that won't cause this side effect (though I hold out little hope of that).
Till next time everyone, stay safe, stay HEALTHY!
"Gastroparesis, also called delayed gastric emptying, is a medical condition consisting of a paresis (partial paralysis) of the stomach, resulting in food remaining in the stomach for a longer period of time than normal. Normally, the stomach contracts to move food down into the small intestine for digestion. The vagus nerve controls these contractions. Gastroparesis may occur when the vagus nerve is damaged and the muscles of the stomach and intestines do not work normally. Food then moves slowly or stops moving through the digestive tract."
Did that help?
And if the food doesn't move down the stomach and into the intestinal tract, it sits there, builds up, and you constantly feel full, and since there is no peristalsis to push the food DOWN, then the slightest gag reflex brings it back up. It could happen for a number of reasons - three of which are all possible with Husband:
1) An operation in the abdominal region, which could damage the vagus nerve which controls peristalsis
2) Chemotherapy
3) Narcotic type drugs, eg, morphine.
Since this only really seems to have become a problem in the last 8 - 10 days, then #3 is the most likely cause.
The gastro doctor explained that normally the medication for this is basically just anti-vomit pills, like maxolon, or the uber-expensive Zofron. I told him our pain management doctor is going to give us another one, called Kytril, and he said, Yes, that would do just as well. My Dad is going to pick up the meds from her on Wednesday (with the Neurontin for the nerve pain in the arm).
I have written to the pain management doctor, to explain the situation to her, and see if she has any other recommendations to make.
Anyway, till this is sorted out, Husband is going to be living mostly on the Ensure protein drink (Thank goodness he likes it!), on rice porridge, and on oats porridge, though I have to make sure that both the porridges are nice and liquid. It also means soups are OK, and the soup from stews, but not carrots, which are harder to digest, or meats. I think potatoes, once they are nice and mushy as in any stew, are OK too. But, for sure, he has to take in very very small portions, and the minute his stomach tells him ENOUGH (and he seems to have learnt to recognise the signs), he has to stop immediately.
This also explains why it takes MUCH longer for the morphine pills to take effect. Usually, within half an hour of taking the pills, it has already taken effect. Now it takes 2 hours or so! To counteract that, when he takes the pills, I also have to give him some of the liquid morphine, as that gets absorbed very fast and can tide him over until such time as the pills kick in. Luckily NO MORE HALLUCINATIONS!
That's it for now. Please pray for Husband that the anti-vomit pills will work and that his stomach will get back to working again. OR that the pain management doctor can identify alternative medication that won't cause this side effect (though I hold out little hope of that).
Till next time everyone, stay safe, stay HEALTHY!
Sunday, December 20, 2009
A year of pain already!
Where did the week go? Actually, the question should be "Where did the YEAR go?", as it has zoomed past at the speed of light (or at least, that's what it feels like sometimes), and it is hard to believe that Husband has been going through hell for the last one year almost!
The pain management doctor has confirmed that the morphine could be the most likely culprit for the puking - for which the normal medication is Maxolon, but since we know that is not working for Husband any more, she is prescribing something called Kytril (Granisetron). She also agrees with me that once we confirm that Husband's stomach is A-OK, we should get him back onto the Neurontin (Gabapentin) for the nerve pain in the arm. Her next clinic day is Wednesday, so my Dad is going to go there to pick up the Neurontin and the Kytril for me.
Last time he went there to pick up meds, as he was registering at the counter, the registration clerk asked him what his relationship to the patient is (since Husband is so obviously NOT a Malaysian). My Dad explained the relationship, and the girl told him that the next time he comes, he should bring along Husband's and my marriage cert, plus a copy for them to keep, as he can then be registered as a local (since he IS married to a local, after all), as opposed to a foreigner, and subsequently just pay the princely sum of RM5 per visit, including consultation AND medication! It's not as if he has to pay a huge amount as a foreigner (RM60 per visit for consultation and medication), but, hey, that was really nice of her, and, of course, we ain't gonna sneeze at the opportunity either!!
The maid is here today - cleaning the house for me - and I have to say that my sister-in-law has really trained her well. I could almost literally say "No corner left untouched, no item left unpicked up!!". Brilliant :-). Vacuum, mop, dust, wipe, scrub... definitely doing a better job than me, any day.
Husband didn't get up till late today - kept insisting he had no energy, until I got him out of bed to have a shower as I said I did not want a stinky in my bed :-D. Following that he was able to eat and, for a change, he actually had one slice of toast with strawberry jam. When I told my Dad that (when he came to drop the maid off), he congratulated Husband and said he hoped to see him "graduate" to two slices of toast soon. Husband has also had one tiny bowl of rice porridge, for lunch, and, of course, keeps sipping away at his Ensure protein drink throughout the day (he has already finished one serving today, and is half way through the 2nd. 1 more to go if possible).
We also have the happy prospect of getting our hands on lots of Pink Dolphin peach water soon. Our old and dear friend Koshu had asked her business partner, who was in SG over the last few days, to pick up a carton and bring it back with him for us. In addition, our beloved Peng is coming up to spend Xmas with us, and she is hitching a ride with her sister and bro-in-law, as they are coming up to KL, so she is also bringing up some Pink Dolphin for us... YIPPEEEEE.. From ZERO to ABUNDANCE.
No other exciting news really, so will stop for now. Please continue to keep Husband in your thoughts and prayers, that he may get his appetite back, stop with the puking, have the pain in his arm eased, and just generally get stronger each day.
Till next time, stay safe, stay HEALTHY!
The pain management doctor has confirmed that the morphine could be the most likely culprit for the puking - for which the normal medication is Maxolon, but since we know that is not working for Husband any more, she is prescribing something called Kytril (Granisetron). She also agrees with me that once we confirm that Husband's stomach is A-OK, we should get him back onto the Neurontin (Gabapentin) for the nerve pain in the arm. Her next clinic day is Wednesday, so my Dad is going to go there to pick up the Neurontin and the Kytril for me.
Last time he went there to pick up meds, as he was registering at the counter, the registration clerk asked him what his relationship to the patient is (since Husband is so obviously NOT a Malaysian). My Dad explained the relationship, and the girl told him that the next time he comes, he should bring along Husband's and my marriage cert, plus a copy for them to keep, as he can then be registered as a local (since he IS married to a local, after all), as opposed to a foreigner, and subsequently just pay the princely sum of RM5 per visit, including consultation AND medication! It's not as if he has to pay a huge amount as a foreigner (RM60 per visit for consultation and medication), but, hey, that was really nice of her, and, of course, we ain't gonna sneeze at the opportunity either!!
The maid is here today - cleaning the house for me - and I have to say that my sister-in-law has really trained her well. I could almost literally say "No corner left untouched, no item left unpicked up!!". Brilliant :-). Vacuum, mop, dust, wipe, scrub... definitely doing a better job than me, any day.
Husband didn't get up till late today - kept insisting he had no energy, until I got him out of bed to have a shower as I said I did not want a stinky in my bed :-D. Following that he was able to eat and, for a change, he actually had one slice of toast with strawberry jam. When I told my Dad that (when he came to drop the maid off), he congratulated Husband and said he hoped to see him "graduate" to two slices of toast soon. Husband has also had one tiny bowl of rice porridge, for lunch, and, of course, keeps sipping away at his Ensure protein drink throughout the day (he has already finished one serving today, and is half way through the 2nd. 1 more to go if possible).
We also have the happy prospect of getting our hands on lots of Pink Dolphin peach water soon. Our old and dear friend Koshu had asked her business partner, who was in SG over the last few days, to pick up a carton and bring it back with him for us. In addition, our beloved Peng is coming up to spend Xmas with us, and she is hitching a ride with her sister and bro-in-law, as they are coming up to KL, so she is also bringing up some Pink Dolphin for us... YIPPEEEEE.. From ZERO to ABUNDANCE.
No other exciting news really, so will stop for now. Please continue to keep Husband in your thoughts and prayers, that he may get his appetite back, stop with the puking, have the pain in his arm eased, and just generally get stronger each day.
Till next time, stay safe, stay HEALTHY!
Saturday, December 19, 2009
We saw the oncologist today...
My sister (Sue) came and picked us up this morning, and drove us to UMSC - it is just before the turn-off to University Malaya, and an area she is very familiar with as that is where she teaches (my baby sister the professor :-D ). Anyway (to get back on track) we had a 9.30am appointment, supposedly, but it was closer to 12 noon before we finally got in to see the onco. Husband was totally exhausted by the time we GOT there, so I asked one of the staff if there was anywhere he could lie down, and they very kindly pointed us to one of the consultants rooms, which was empty. All the rooms have a hospital gurney in it, with pillows and blanket, so Husband was able to lie down while waiting - and thank God for that, as there is no way he could have SAT and waited for so long.
So, as said, we finally got in at 12noon... and, basically, the oncologist told us that until Husband gets the pain under control - ie, the pain in his arm... as the pain in the back IS under control - and until he stops vomiting, and starts eating and gaining some strength, he is too frail at the moment to do any chemo. He is going to make the arrangements with the hospice people to come in to see Husband regularly, to work with him to try various meds, foods, whatever, to get him back on track. That may take a week or so to materialise, as we are heading into Xmas, and quite a lot of people take leave in this season (and not just those who "officially" celebrate Xmas, as EVERYONE in Malaysia celebrates EVERY public holiday). Anyway, the onco also gave me their number and told me to call them by Wednesday if I have not heard from them.
He is also making arrangements for Husband to have a CT Scan done, on the neck and upper spine, and left shoulder/armpit, to see if there is anything there that is causing the pain in the arm. Most likely to be on Tuesday.
I have also made the arrangements for Husband to see the gastro on Monday, first thing in the morning, to do a scope of the stomach, to eliminate any stomach infection or other problem (the colon has already been pronounced "clean" as of two weeks ago).
In addition, I have already emailed to the pain management doctor, to ask her if the pain meds he is on could be causing the puking. I mean, ever since he started chemo at the end of April he has puked off and on, but not very often. He started on morphine at the beginning of Dec, and, apart from the hallucinations, he had no nausea. This week, however, it has gotten to be an almost daily occurrence, sometimes 2 or 3 times a day, whether he eats or not!
So, that's it for now. Nothing new per se, but now we have the hospice people to wait for, and the gastro to pronounce his verdict on Husband's "innards".
Please continue to keep Husband in your thoughts and prayers, that he gain strength, stop vomiting, and the pain in his arm ease up.
Till next time, stay safe, stay HEALTHY.
So, as said, we finally got in at 12noon... and, basically, the oncologist told us that until Husband gets the pain under control - ie, the pain in his arm... as the pain in the back IS under control - and until he stops vomiting, and starts eating and gaining some strength, he is too frail at the moment to do any chemo. He is going to make the arrangements with the hospice people to come in to see Husband regularly, to work with him to try various meds, foods, whatever, to get him back on track. That may take a week or so to materialise, as we are heading into Xmas, and quite a lot of people take leave in this season (and not just those who "officially" celebrate Xmas, as EVERYONE in Malaysia celebrates EVERY public holiday). Anyway, the onco also gave me their number and told me to call them by Wednesday if I have not heard from them.
He is also making arrangements for Husband to have a CT Scan done, on the neck and upper spine, and left shoulder/armpit, to see if there is anything there that is causing the pain in the arm. Most likely to be on Tuesday.
I have also made the arrangements for Husband to see the gastro on Monday, first thing in the morning, to do a scope of the stomach, to eliminate any stomach infection or other problem (the colon has already been pronounced "clean" as of two weeks ago).
In addition, I have already emailed to the pain management doctor, to ask her if the pain meds he is on could be causing the puking. I mean, ever since he started chemo at the end of April he has puked off and on, but not very often. He started on morphine at the beginning of Dec, and, apart from the hallucinations, he had no nausea. This week, however, it has gotten to be an almost daily occurrence, sometimes 2 or 3 times a day, whether he eats or not!
So, that's it for now. Nothing new per se, but now we have the hospice people to wait for, and the gastro to pronounce his verdict on Husband's "innards".
Please continue to keep Husband in your thoughts and prayers, that he gain strength, stop vomiting, and the pain in his arm ease up.
Till next time, stay safe, stay HEALTHY.
Friday, December 18, 2009
We stumped the Gastro doc!!
Got to the hospital around 3pm, for our 3.15pm appointment. Since we were the first appointment for the afternoon, the nurse took one look at Husband in his wheelchair and immediately took us into the doctors room so that he could lie down and rest while waiting. :-). HOWEVER, we still ended up waiting till almost 4pm before the doc actually turned up. I wonder what it is about doctors that they are ALWAYS, ALWAYS late? Do they like keeping their patients waiting and cursing in their waiting rooms? And I'm not talking GP (as GP's usually have very little control on the number of walk-in patients turning up every day). I'm talking specialists, who give out specific appointments, and very rarely see walk-in patients!
Anyway, let's just say that Husband completely stumped the doc. He could not find anything wrong with him at all... sigh. We had explained that the puking was either on an empty stomach OR immediately (and I do mean IMMEDIATELY) after eating... which seems to mean that there is something wrong with the stomach instead of the intestines (for a change :-p). So the doc poked, prodded, and listened (how does one interpret stomach gurgles? Is there a special "gurgle" language gastro docs have to learn?), but could find absolutely nothing out of the ordinary. No lumps, no growths, no build up of undigested food, no build up of digested food either! The doc said that if this continues, they he may have to do a scope of the stomach to see if there is any infection there!
So, he gave Husband gastric pills, and also prescribed something called Zofron - which is an anti-vomit pill which he said would be better than the current anti-vomit pill (Maxolon) that Husband takes pretty much daily. Anyway, we had to go down to the hospital pharmacy for the Zofron - drop the prescription in a tray, get a number, and wait. First time they call your number is to pay for the med... so when I went up to pay, and they told me RM550 I almost had a heart attack! I was like "WHAT? RM550? For how many pills?", and they told me TEN pills, I almost fainted from shock. That works out to RM55 FOR ONE PILL!!! That is almost TEN POUND STERLING or SIXTEEN US DOLLARS, for ONE PILL! Anyway, we told them to keep their pills, and walked out.
So, any good news? Well, I guess so - Husband did NOT puke the whole of yesterday. He had rice porridge (chicken flavoured) a couple of times in the evening - just very small portions, just to line the stomach and thereby avoid gatric pains. As for this morning, he had a very tiny puke after eating half his breakfast, but nothing really came out... and he has managed to finish the rest of his breakfast (Quaker oats, in case you are wondering) without any further problem. I have a theory about the morning pukes, which I will put to the test tomorrow. Basically, at 7am, he gets up to take his pain killers... and usually downs it with a swig of the Ensure protein drink. Personally, I think that the drink is a little too rich and sweet for that early in the morning... so tomorrow I shall try and persuade him to have a swig of cold water instead, and we will see what happens after that. Hopefully I am right, as it would make life so much less ICKY for Husband :-).
Anyone coming up from SG in a car? If Yes, could you bring us one carton of the Pink Dolphin peach flavoured water? :-D We'll pay for it - we still have loads of Singapore Dollars :-). Nope, it is not available in Malaysia. The closest equivalent, when it goes warm, tastes like perfumed water which is not very nice... whereas the Pink Dolphin water still has this lovely flavour of peaches even when it is warm.
I guess that's it for today. It is going to be a VERY quiet day today - as it is a public holiday in Malaysia, and I have no errands to run today. Tomorrow we go see the oncologist in the morning. Will update again after that.
So, please continue to keep Husband in your thoughts and prayers, and, remember, till next time, stay safe, stay HEALTHY!
Anyway, let's just say that Husband completely stumped the doc. He could not find anything wrong with him at all... sigh. We had explained that the puking was either on an empty stomach OR immediately (and I do mean IMMEDIATELY) after eating... which seems to mean that there is something wrong with the stomach instead of the intestines (for a change :-p). So the doc poked, prodded, and listened (how does one interpret stomach gurgles? Is there a special "gurgle" language gastro docs have to learn?), but could find absolutely nothing out of the ordinary. No lumps, no growths, no build up of undigested food, no build up of digested food either! The doc said that if this continues, they he may have to do a scope of the stomach to see if there is any infection there!
So, he gave Husband gastric pills, and also prescribed something called Zofron - which is an anti-vomit pill which he said would be better than the current anti-vomit pill (Maxolon) that Husband takes pretty much daily. Anyway, we had to go down to the hospital pharmacy for the Zofron - drop the prescription in a tray, get a number, and wait. First time they call your number is to pay for the med... so when I went up to pay, and they told me RM550 I almost had a heart attack! I was like "WHAT? RM550? For how many pills?", and they told me TEN pills, I almost fainted from shock. That works out to RM55 FOR ONE PILL!!! That is almost TEN POUND STERLING or SIXTEEN US DOLLARS, for ONE PILL! Anyway, we told them to keep their pills, and walked out.
So, any good news? Well, I guess so - Husband did NOT puke the whole of yesterday. He had rice porridge (chicken flavoured) a couple of times in the evening - just very small portions, just to line the stomach and thereby avoid gatric pains. As for this morning, he had a very tiny puke after eating half his breakfast, but nothing really came out... and he has managed to finish the rest of his breakfast (Quaker oats, in case you are wondering) without any further problem. I have a theory about the morning pukes, which I will put to the test tomorrow. Basically, at 7am, he gets up to take his pain killers... and usually downs it with a swig of the Ensure protein drink. Personally, I think that the drink is a little too rich and sweet for that early in the morning... so tomorrow I shall try and persuade him to have a swig of cold water instead, and we will see what happens after that. Hopefully I am right, as it would make life so much less ICKY for Husband :-).
Anyone coming up from SG in a car? If Yes, could you bring us one carton of the Pink Dolphin peach flavoured water? :-D We'll pay for it - we still have loads of Singapore Dollars :-). Nope, it is not available in Malaysia. The closest equivalent, when it goes warm, tastes like perfumed water which is not very nice... whereas the Pink Dolphin water still has this lovely flavour of peaches even when it is warm.
I guess that's it for today. It is going to be a VERY quiet day today - as it is a public holiday in Malaysia, and I have no errands to run today. Tomorrow we go see the oncologist in the morning. Will update again after that.
So, please continue to keep Husband in your thoughts and prayers, and, remember, till next time, stay safe, stay HEALTHY!
Wednesday, December 16, 2009
Another setback :-(
Why is it that every time we feel like we are taking a step forward, something will happen to take us at least 2 steps backward?
Husband has been puking a lot today - started even before breakfast! Then after lunch, then in the middle of the afternoon when he hadn't even eaten anything! He has managed to keep down some quaker oats - once for breakfast, and once at about 5.30pm. He has also been good about drinking his Ensure protein drink... and that's about all he has been able to tolerate.
Will take him back to the gastro tomorrow. See what's what.
Also, ironically, putting him on 3 morphine tablets, every 12 hours, is working out WORSE than having 2 tablets, every 8 hours. He has already had to have 2 doses of 4ml each of the liquid morphine, to supplement the pills!!! So our pain management doc has asked me to put him back on the 8-hourly cycle, with doses of liquid morphine, IF required, in between.
The other update - our oncologist in Melaka has made arrangements for us to see an oncologist in KL this coming Saturday, 9.30am, at the University Malaya Specialist Centre. My sister is coming with us, as she knows where it is, and also so she can get a wheelchair for Husband, and keep him company at the entrance of the centre while I go and park the car and make my way back to them (apparently a little bit of a distance from car park to hospital entrance, and I don't want Husband to have to walk that distance!).
Will update tomorrow, once we have seen the gastro doc.
Please continue to keep Husband in your thoughts and prayers, that this may just be a VERY temporary setback.
Till next time, stay safe, stay HEALTHY!
Husband has been puking a lot today - started even before breakfast! Then after lunch, then in the middle of the afternoon when he hadn't even eaten anything! He has managed to keep down some quaker oats - once for breakfast, and once at about 5.30pm. He has also been good about drinking his Ensure protein drink... and that's about all he has been able to tolerate.
Will take him back to the gastro tomorrow. See what's what.
Also, ironically, putting him on 3 morphine tablets, every 12 hours, is working out WORSE than having 2 tablets, every 8 hours. He has already had to have 2 doses of 4ml each of the liquid morphine, to supplement the pills!!! So our pain management doc has asked me to put him back on the 8-hourly cycle, with doses of liquid morphine, IF required, in between.
The other update - our oncologist in Melaka has made arrangements for us to see an oncologist in KL this coming Saturday, 9.30am, at the University Malaya Specialist Centre. My sister is coming with us, as she knows where it is, and also so she can get a wheelchair for Husband, and keep him company at the entrance of the centre while I go and park the car and make my way back to them (apparently a little bit of a distance from car park to hospital entrance, and I don't want Husband to have to walk that distance!).
Will update tomorrow, once we have seen the gastro doc.
Please continue to keep Husband in your thoughts and prayers, that this may just be a VERY temporary setback.
Till next time, stay safe, stay HEALTHY!
Of hallucinations, and Xmas!
Strange combination of subjects, isn't it?
Well, let's start with the hallucinations. Husband still has them. Yes, on a daily basis. No, not on a 24 hour basis. Happens more at night than in the daytime - probably because we sleep with the curtains open (we are high enough up, with nobody overlooking our windows!), so the shadows that get thrown in the room can be pretty scary. The doc did say it would take a few weeks for the hallucinations to completely disappear, but it WOULD disappear, and that is the reassurance I am holding on to for now. I'm not going to beg for trouble before it happens :-(.
As to his meds, I have switched to giving him the meds twice a day. So instead of 2 pills 3-times a day, at 8 hourly intervals, I am (as per doctors suggestion), switching to 3 pills 2-times a day, at 12-hourly intervals. The doctor wants me to see WHEN (IF) the pain breaks through, and, if required, administer the liquid morphine, and track how much of the liquid opiate I am giving him. She will use this information to adjust his dosage later. The reason for this change is that Husband is still too sleepy all the time, so she thinks the drugs are not coming out of his system in 8 hours. The way it should be is that, as we come closer to the next dosage, the pain should be breaking through. If it is not, then the drug is not being flushed out of his system fast enough. So, first step: 3 pills, twice daily at 12 hour intervals (8am, 8pm). If he is still too sleepy, she wants me to reduce it to 2 pills at 8am, 3 pills at 8pm.... so let's see how it goes.
Now, on to Xmas.
Went shopping with my sister yesterday. She brought my Mum and the maid over as well - my Mum to keep an eye on Husband, and make sure he has his lunch, and takes his meds, at the right times. The maid to clean the house. My sis and I left home at 10.30am, and didn't get home till just after 4.00pm! Phew!!! Talk about TIRED! And my BACK - oh boy, it has been a LONG time since my back ached like that. It's all that walking, even if I did wear so-called "walking shoes"!
It was worth it though. Got all my Xmas present shopping done, AND got all the Xmas tree decorations and lights :-D. IN ONE DAY! Wow, now, that is the first time EVER I have been able to that. My sister had also brought over her small (4 ft) Xmas tree for me, as they had bought a bigger one for themselves. So, after we got home from our shopping, and after my sis had left with Mum and maid, I started on the tree - sorting out the decorations, the tinsel, the lights. Setting the tree up, and then decorating it. Found I had bought TOO MANY decorations :-p, but I figure, what the heck, Xmas decorations always get damaged or lost, so I have lots of spares for the next few years :-D. Also got all the Xmas pressies wrapped, and under the tree... and they will be transferred from here to our PJ house on Xmas Eve, for the family get together dinner and gift opening session after dinner on Xmas Eve. Yes, we always do this on Xmas Eve. Always have done, as Xmas Day was usually an "open house" day when friends come over, and we have no time for just the family.
No, we are not having open house this year. I think, with the way Husband is, nobody really has the mood to do that kind of party. We shall save it for next year when he is better. Husband and I will have Hwee Peng staying with us for the weekend :-D, so she is going to be part of the family get-together on Xmas Eve. Tony won't be able to join us, as he is making his usual Xmas trip back to Ireland to spend Xmas with his family.... BUT, if Husband is well enough, strong enough, we may be able to make a trip to SG to spend New Year with Peng and Tony. At this moment, I am not too optimistic about that - but miracles have been known to happen!
Last night we also had the unexpected pleasure of talking to Husband's sister, Avis, and her husband, John, on Skype.. Not just TALKING, but SEEING, as these two self-proclaimed technophobes shocked themselves by successfully setting up skype on their machine WITH a webcam and all. Well done Avis and John :-)... and we look forward to "seeing" you again soon.
SO, that's it for now. Please, as always, continue to keep Husband in your thoughts and prayers, that he can adjust well to the opiates and have NO MORE hallucinations, and that he gets stronger, becomes more positive, and then we can continue the fight against the cancer.
Till next time, stay safe, stay HEALTHY!
Well, let's start with the hallucinations. Husband still has them. Yes, on a daily basis. No, not on a 24 hour basis. Happens more at night than in the daytime - probably because we sleep with the curtains open (we are high enough up, with nobody overlooking our windows!), so the shadows that get thrown in the room can be pretty scary. The doc did say it would take a few weeks for the hallucinations to completely disappear, but it WOULD disappear, and that is the reassurance I am holding on to for now. I'm not going to beg for trouble before it happens :-(.
As to his meds, I have switched to giving him the meds twice a day. So instead of 2 pills 3-times a day, at 8 hourly intervals, I am (as per doctors suggestion), switching to 3 pills 2-times a day, at 12-hourly intervals. The doctor wants me to see WHEN (IF) the pain breaks through, and, if required, administer the liquid morphine, and track how much of the liquid opiate I am giving him. She will use this information to adjust his dosage later. The reason for this change is that Husband is still too sleepy all the time, so she thinks the drugs are not coming out of his system in 8 hours. The way it should be is that, as we come closer to the next dosage, the pain should be breaking through. If it is not, then the drug is not being flushed out of his system fast enough. So, first step: 3 pills, twice daily at 12 hour intervals (8am, 8pm). If he is still too sleepy, she wants me to reduce it to 2 pills at 8am, 3 pills at 8pm.... so let's see how it goes.
Now, on to Xmas.
Went shopping with my sister yesterday. She brought my Mum and the maid over as well - my Mum to keep an eye on Husband, and make sure he has his lunch, and takes his meds, at the right times. The maid to clean the house. My sis and I left home at 10.30am, and didn't get home till just after 4.00pm! Phew!!! Talk about TIRED! And my BACK - oh boy, it has been a LONG time since my back ached like that. It's all that walking, even if I did wear so-called "walking shoes"!
It was worth it though. Got all my Xmas present shopping done, AND got all the Xmas tree decorations and lights :-D. IN ONE DAY! Wow, now, that is the first time EVER I have been able to that. My sister had also brought over her small (4 ft) Xmas tree for me, as they had bought a bigger one for themselves. So, after we got home from our shopping, and after my sis had left with Mum and maid, I started on the tree - sorting out the decorations, the tinsel, the lights. Setting the tree up, and then decorating it. Found I had bought TOO MANY decorations :-p, but I figure, what the heck, Xmas decorations always get damaged or lost, so I have lots of spares for the next few years :-D. Also got all the Xmas pressies wrapped, and under the tree... and they will be transferred from here to our PJ house on Xmas Eve, for the family get together dinner and gift opening session after dinner on Xmas Eve. Yes, we always do this on Xmas Eve. Always have done, as Xmas Day was usually an "open house" day when friends come over, and we have no time for just the family.
No, we are not having open house this year. I think, with the way Husband is, nobody really has the mood to do that kind of party. We shall save it for next year when he is better. Husband and I will have Hwee Peng staying with us for the weekend :-D, so she is going to be part of the family get-together on Xmas Eve. Tony won't be able to join us, as he is making his usual Xmas trip back to Ireland to spend Xmas with his family.... BUT, if Husband is well enough, strong enough, we may be able to make a trip to SG to spend New Year with Peng and Tony. At this moment, I am not too optimistic about that - but miracles have been known to happen!
Last night we also had the unexpected pleasure of talking to Husband's sister, Avis, and her husband, John, on Skype.. Not just TALKING, but SEEING, as these two self-proclaimed technophobes shocked themselves by successfully setting up skype on their machine WITH a webcam and all. Well done Avis and John :-)... and we look forward to "seeing" you again soon.
SO, that's it for now. Please, as always, continue to keep Husband in your thoughts and prayers, that he can adjust well to the opiates and have NO MORE hallucinations, and that he gets stronger, becomes more positive, and then we can continue the fight against the cancer.
Till next time, stay safe, stay HEALTHY!
Monday, December 14, 2009
Achey, breaky...
Husband is aching today - probably as a result of his first attempt at exercise yesterday, in the form of the morning walk to the spa hot pool plus the ten minutes soaking in the spa hot pool with the bubbles pummelling him, and the evening walk around the lap pool. We will be going to the spa pool again this afternoon - first a walk around the lap pool, and then 10 minutes in the spa hot pool.
We were planning on going to see our GP this morning, only to find out that she is on leave for this week, and her replacement is not a doctor that either of us particularly like..... so Husband refuses to see him, and wants to wait till next Monday when our doc comes back. Can't really blame him, as that is what I would do too :-p, under normal circumstances.
We had wanted to see the doc about the soreness in his left arm. It goes from the back of his hand, to the wrist, to just above the elbow. It SEEMS like a pinched nerve in the hand, probably from the time he used to lie with his left hand tucked under his butt, to alleviate the pain on his back. However, since getting onto the new pain meds, he has not had to do that, so, with any luck, the nerve will heal itself slowly. But, we will still go and see our doc next week Monday.
The other reason we wanted to see the doc is that last night he puked up his dinner, almost immediately after eating it.... and then did the same again this morning immediately after eating breakfast. Not sure WHY, though he thinks it is because he ate too fast and his stomach could not cope so it rebelled. We will see how it goes later today, and if it is still happening, then I will have to take him to see a doctor.. though WHICH doctor, I am not quite sure :-p.
Please continue to keep Husband in your thoughts and prayers, and for us to have the strength to keep on plugging away daily!
Till next time, stay safe, stay HEALTHY!
We were planning on going to see our GP this morning, only to find out that she is on leave for this week, and her replacement is not a doctor that either of us particularly like..... so Husband refuses to see him, and wants to wait till next Monday when our doc comes back. Can't really blame him, as that is what I would do too :-p, under normal circumstances.
We had wanted to see the doc about the soreness in his left arm. It goes from the back of his hand, to the wrist, to just above the elbow. It SEEMS like a pinched nerve in the hand, probably from the time he used to lie with his left hand tucked under his butt, to alleviate the pain on his back. However, since getting onto the new pain meds, he has not had to do that, so, with any luck, the nerve will heal itself slowly. But, we will still go and see our doc next week Monday.
The other reason we wanted to see the doc is that last night he puked up his dinner, almost immediately after eating it.... and then did the same again this morning immediately after eating breakfast. Not sure WHY, though he thinks it is because he ate too fast and his stomach could not cope so it rebelled. We will see how it goes later today, and if it is still happening, then I will have to take him to see a doctor.. though WHICH doctor, I am not quite sure :-p.
Please continue to keep Husband in your thoughts and prayers, and for us to have the strength to keep on plugging away daily!
Till next time, stay safe, stay HEALTHY!
Sunday, December 13, 2009
One tiny (voluntary) step forward
OK, don't be tooooo taken in by the word "voluntary" in there :-p.
I was so upset with Husband yesterday, that he was making absolutely no effort to GET UP, to MOVE, to GET HIS ACT TOGETHER! He had completely given himself over to apathy and the stand that he had "NO ENERGY at all to get up". His best friend, Kevin L, called from the UK, and couldn't get any sense into him. His son, Jason, called from the UK too, and also couldn't get any sense into him. It was like he had given up completely :-(. My parents came over last night, with dinner for me (I had done a fresh chicken stew for Husband already), and they were both so upset as well. I think last night was the first time I have EVER cried in front of my parents. I just could not help it, it was just so painful to think of him lying there and not moving :-(
After I gave him his 11pm meds last night, I just could not go to bed, so I was in the living room, lights off, and had JUST fallen asleep, when Husband came looking for me, asking why I was out there and I told him honestly that I did not want to cry myself to sleep in bed next to him, I'ld rather be in the living room. He left me alone then, but, having been woken up, I just could not go back to sleep. I decided to read, but I didn't want to have the living room lights on all night, so went to the back guest bedroom and brought the floor standing lamp from there, placed it behind my recliner, and just sat and read until 5.30am. Then I just switched off the light, and sat and watched the sky lighten, until the alarm rang at 7am for Husbands first meds of the day.
Got him his meds, then got him up for breakfast 30 minutes later. After breakfast, he asked me "What's happening?" (meaning, why was I not talking to him, and why did I choose to spend the night in the living room), and, MAN, did the dam burst! I was in tears, could barely speak, but basically told him that I could not give him back his will to live - his will power has to overcome his "wont" power - and if he was going to continue like this - just lying there day after day without a fight, expecting "energy" to just 'flow back' into his body without him doing anything about it - then I might as well get used to not having anybody next to me when I sleep, cos he sure won't survive for long then! I went on and on in that vein, crying my eyes out and barely able to speak coherently, for a good 10 minutes. I WAS SO ANGRY, AND SO UPSET, AND just HURTING so much.. .and, Yes, I am crying now as I write this :-/
When I finally managed to stop myself, he said he was sure that in a few more days he would feel better, and I reminded him that he has been saying that for the last 8 months, and it has not happened yet - without HE HIMSELF getting up and doing something about it. After a little while he said "Would you do something for me? Would you come downstairs to the pool and spa island, and sit with me in the hot pool?"
OHMYGOODNESS!! That was the FIRST, the very FIRST, time HE has suggested that we do something. SO, OF COURSE, I SAID YES! He changed into swim-shorts (Yes, Kevin, these are the swim shorts you left behind for him in April, and they are TOO BIG for him now, so you can imagine how scrawny he is), and we went downstairs - very slow walk around half the pool and to the spa area, very careful walk to the hot/cold pools, and, finally, a good 10 minute sit down soak in the HOT pool, with the bubbles ON at full blast, using the bubbles to massage his arms and his back.
Slow walk back to the lift and back up, then he had to lie down and rest for 10 minutes to catch his breath before he could shower. This was then followed by a fresh bowl of rice porridge (with strips of shredded chicken in it) for his lunch, while I had left overs from the food that my parents had brought the night before. We both then just FELL ASLEEP :-).
He says he is tired, but a "good" tired, if you know what I mean, with muscles aching for the RIGHT reasons, not the wrong reasons. And he has agreed to go down again tomorrow, and the next day, and every day. We managed a total of 20 minutes today (that included the slow walk and the soak), and we will target for another 10 minutes later today, just to take a slow walk round the pool after the intensity of the sun has faded.... and then we shall repeat the whole process daily, slowly increasing the duration, until we are able to add in WALKING in the malls again as part of our exercise repertoire.
I hope Husbands WILL-power will continue to build and grow stronger and totally kick out his WONT-power. Please continue to pray for him, that he should get stronger, so that we can return to the "main" fight, against the cancer.
Till next time, stay safe, stay HEALTHY!
PS: What's with the monsoon season this year? It is HOT, there is no RAIN!
I was so upset with Husband yesterday, that he was making absolutely no effort to GET UP, to MOVE, to GET HIS ACT TOGETHER! He had completely given himself over to apathy and the stand that he had "NO ENERGY at all to get up". His best friend, Kevin L, called from the UK, and couldn't get any sense into him. His son, Jason, called from the UK too, and also couldn't get any sense into him. It was like he had given up completely :-(. My parents came over last night, with dinner for me (I had done a fresh chicken stew for Husband already), and they were both so upset as well. I think last night was the first time I have EVER cried in front of my parents. I just could not help it, it was just so painful to think of him lying there and not moving :-(
After I gave him his 11pm meds last night, I just could not go to bed, so I was in the living room, lights off, and had JUST fallen asleep, when Husband came looking for me, asking why I was out there and I told him honestly that I did not want to cry myself to sleep in bed next to him, I'ld rather be in the living room. He left me alone then, but, having been woken up, I just could not go back to sleep. I decided to read, but I didn't want to have the living room lights on all night, so went to the back guest bedroom and brought the floor standing lamp from there, placed it behind my recliner, and just sat and read until 5.30am. Then I just switched off the light, and sat and watched the sky lighten, until the alarm rang at 7am for Husbands first meds of the day.
Got him his meds, then got him up for breakfast 30 minutes later. After breakfast, he asked me "What's happening?" (meaning, why was I not talking to him, and why did I choose to spend the night in the living room), and, MAN, did the dam burst! I was in tears, could barely speak, but basically told him that I could not give him back his will to live - his will power has to overcome his "wont" power - and if he was going to continue like this - just lying there day after day without a fight, expecting "energy" to just 'flow back' into his body without him doing anything about it - then I might as well get used to not having anybody next to me when I sleep, cos he sure won't survive for long then! I went on and on in that vein, crying my eyes out and barely able to speak coherently, for a good 10 minutes. I WAS SO ANGRY, AND SO UPSET, AND just HURTING so much.. .and, Yes, I am crying now as I write this :-/
When I finally managed to stop myself, he said he was sure that in a few more days he would feel better, and I reminded him that he has been saying that for the last 8 months, and it has not happened yet - without HE HIMSELF getting up and doing something about it. After a little while he said "Would you do something for me? Would you come downstairs to the pool and spa island, and sit with me in the hot pool?"
OHMYGOODNESS!! That was the FIRST, the very FIRST, time HE has suggested that we do something. SO, OF COURSE, I SAID YES! He changed into swim-shorts (Yes, Kevin, these are the swim shorts you left behind for him in April, and they are TOO BIG for him now, so you can imagine how scrawny he is), and we went downstairs - very slow walk around half the pool and to the spa area, very careful walk to the hot/cold pools, and, finally, a good 10 minute sit down soak in the HOT pool, with the bubbles ON at full blast, using the bubbles to massage his arms and his back.
Slow walk back to the lift and back up, then he had to lie down and rest for 10 minutes to catch his breath before he could shower. This was then followed by a fresh bowl of rice porridge (with strips of shredded chicken in it) for his lunch, while I had left overs from the food that my parents had brought the night before. We both then just FELL ASLEEP :-).
He says he is tired, but a "good" tired, if you know what I mean, with muscles aching for the RIGHT reasons, not the wrong reasons. And he has agreed to go down again tomorrow, and the next day, and every day. We managed a total of 20 minutes today (that included the slow walk and the soak), and we will target for another 10 minutes later today, just to take a slow walk round the pool after the intensity of the sun has faded.... and then we shall repeat the whole process daily, slowly increasing the duration, until we are able to add in WALKING in the malls again as part of our exercise repertoire.
I hope Husbands WILL-power will continue to build and grow stronger and totally kick out his WONT-power. Please continue to pray for him, that he should get stronger, so that we can return to the "main" fight, against the cancer.
Till next time, stay safe, stay HEALTHY!
PS: What's with the monsoon season this year? It is HOT, there is no RAIN!
Saturday, December 12, 2009
If it's not one thing, it's another :-(
Husband's left arm, mostly forearm and back of hand, is very sore. The soreness started from his last stay in the hospital where they put an IV needle into the back of his left hand, and caused him a lot of pain. The veins in his hands and arms are very fine, and rather fragile, and most doctors and nurses have a lot of problem trying to find them - usually necessitating several attempts, all painful.
Normally the pain will disappear, but this time it is not going - to the extent that the pain has been slowly moving up his left arm, and to his upper back and shoulder muscles. And all this just when we thought we were getting somewhere :-(.
Will be taking him to the doctor on Monday - our GP first, and then we see where we go from there.
Please continue to keep Husband in your thoughts and prayers.
Till next time, stay safe, stay HEALTHY!
Normally the pain will disappear, but this time it is not going - to the extent that the pain has been slowly moving up his left arm, and to his upper back and shoulder muscles. And all this just when we thought we were getting somewhere :-(.
Will be taking him to the doctor on Monday - our GP first, and then we see where we go from there.
Please continue to keep Husband in your thoughts and prayers.
Till next time, stay safe, stay HEALTHY!
Friday, December 11, 2009
Day 3 since starting new meds: updates
Well, it is good news for sure, so far! The meds are working well. In fact, by yesterday (Thursday) afternoon, there was no return of pain after the 4 hour mark had passed. Maybe it just needed some time to build up into his system. Whatever! It is working, and the pain is definitely well under control.
He is also sleeping reasonably well - both Wed and Thu night he slept at 11pm (after the last dose of meds for the day), and slept all the way through till about 5am... at which point he would sit up to take a drink of cold water, or some of the Ensure protein drink, and then go back to sleep till I woke him at 7am for his first dose of meds. Thank God for the mini fridge that I got! It sits next to him, on his bedside table, and is just big enough to hold 3 bottles of drink comfortably :-). It keeps his drinks cold, and saves the hassle of going to the kitchen to get something cold to drink for Husband, as he absolutely will NOT drink warm water, warm milk, warm Ensure! The only things he drinks hot are hot chocolate, hot coffee and hot tea :-). Everything else better be cold.
Next step, as I just reminded him this morning, is up to him to take. Since the pain is under control, the cancer is not stopping him from doing anything, and the bedsore is not the cause of his pain (and even if it was, as I have just said, the pain is under control anyway!). So now, HE has to make the effort to get up, to move, to walk, to exercise, to eat, to just build up his strength. I cannot do it for him, he has to do it for himself.
Please continue to keep Husband in your thoughts and prayers, that he has the strength of WILL to do what is necessary to build himself back up. I can provide the support, but he HAS to do it for himself.
Till next time, stay safe, stay HEALTHY!
He is also sleeping reasonably well - both Wed and Thu night he slept at 11pm (after the last dose of meds for the day), and slept all the way through till about 5am... at which point he would sit up to take a drink of cold water, or some of the Ensure protein drink, and then go back to sleep till I woke him at 7am for his first dose of meds. Thank God for the mini fridge that I got! It sits next to him, on his bedside table, and is just big enough to hold 3 bottles of drink comfortably :-). It keeps his drinks cold, and saves the hassle of going to the kitchen to get something cold to drink for Husband, as he absolutely will NOT drink warm water, warm milk, warm Ensure! The only things he drinks hot are hot chocolate, hot coffee and hot tea :-). Everything else better be cold.
Next step, as I just reminded him this morning, is up to him to take. Since the pain is under control, the cancer is not stopping him from doing anything, and the bedsore is not the cause of his pain (and even if it was, as I have just said, the pain is under control anyway!). So now, HE has to make the effort to get up, to move, to walk, to exercise, to eat, to just build up his strength. I cannot do it for him, he has to do it for himself.
Please continue to keep Husband in your thoughts and prayers, that he has the strength of WILL to do what is necessary to build himself back up. I can provide the support, but he HAS to do it for himself.
Till next time, stay safe, stay HEALTHY!
Thursday, December 10, 2009
Getting back to normal :-D
Started Husband on the slow release pills yesterday at 3pm. It works fairly well, in that it seems to 'kill' the pain completely for approx 4 hours, then it slowly comes back again, though not at the same high intensity. If we say that, on a scale of 1 - 10, his normal pain is around 7-8 (so he says), then this 'reduced' pain is around 3. It stays at that intensity all the way, to the next dosage. So, I have emailed our wonderful pain management doctor to ask her advice on what to do to ensure the pain stays suppressed ALL the way through to the next dosage - ie, either increase each dose, OR split the dose up to be taken at shorter durations? Or....?
He also remembered (as I should have) that the last few times he tried sleeping pills, he had mild hallucinations during the night, which disappeared in the morning. He thinks that the "wild" hallucinations of the last few days could be due to a combination of the morphine and the amitryptilline. He has had no hallucinations at all since he stopped the amitryptilline on Tuesday night, and last night he refused to take the new sleeping pill (dormicum) prescribed by the doctor, as he was terrified of hallucinating again. He slept most of yesterday, and most of last night, so I guess I will not be giving him the dormicum after all!
So, end result: A tired but relieved Husband (and me!), with Husbands' pain reasonably under control and NO hallucinations at all since Tuesday night! He still has the twitches, but far less than before. I am giving him a couple of days to catch up on all the sleep he missed during his wild hallucinations ride(!), then have to start getting him up and moving, and not let him sleep all the time.
Thank you all, for all your prayers and your moral support... and especially to my parents for keeping an eye on Husband the other day, giving themselves a huge shock in the process!!
So, please continue to keep Husband in your thoughts and prayers, so that the pain can be brought completely under control and we can then continue our fight against the cancer.
Till next time, stay safe, stay HEALTHY!
He also remembered (as I should have) that the last few times he tried sleeping pills, he had mild hallucinations during the night, which disappeared in the morning. He thinks that the "wild" hallucinations of the last few days could be due to a combination of the morphine and the amitryptilline. He has had no hallucinations at all since he stopped the amitryptilline on Tuesday night, and last night he refused to take the new sleeping pill (dormicum) prescribed by the doctor, as he was terrified of hallucinating again. He slept most of yesterday, and most of last night, so I guess I will not be giving him the dormicum after all!
So, end result: A tired but relieved Husband (and me!), with Husbands' pain reasonably under control and NO hallucinations at all since Tuesday night! He still has the twitches, but far less than before. I am giving him a couple of days to catch up on all the sleep he missed during his wild hallucinations ride(!), then have to start getting him up and moving, and not let him sleep all the time.
Thank you all, for all your prayers and your moral support... and especially to my parents for keeping an eye on Husband the other day, giving themselves a huge shock in the process!!
So, please continue to keep Husband in your thoughts and prayers, so that the pain can be brought completely under control and we can then continue our fight against the cancer.
Till next time, stay safe, stay HEALTHY!
Wednesday, December 09, 2009
He SLEPT last night! Hallelujah :-D
But let's not get ahead of ourselves and start jumping around in glee. Yep, he slept all right! BUT, this morning, he is still twitching and jerking and hallucinating.
Anyway, back to the beginning. Husband slept from 11pm last night, to 6am this morning. I was supposed to give him his usual 4am dose of opiate, but when I saw how soundly he was sleeping I just did not have the heart to wake him up. I figured he needs the sleep desperately, and I can skip the dose till whatever time he wakes up. As it turned out, he woke up at 6am, so I gave him the opiate, in a lower dose (4ml, just for 2 hours), and he went back to sleep again.
HAD to get him up for breakfast before 8am, because otherwise he gets gastric pains and he really does NOT need any more "pains" to add discomfort to his already much abused body! Gave him the (hopefully) FINAL dose of the liquid opiate at 8.10am. Next round of meds is at 10.30am, and that will be 30mg of oxycontin. THEN the slow release capsules take over :-)
He is back to dozing again - still tired out from not sleeping for so many days and nights in a row. Still depressed because he is still having hallucinations and the twitches. BUT he is not as hyperactive as the last 2 days, probably because he just too physically exhausted after the hyperactive-ness of the last two days!!!
My Dad is probably already at the hospital by now, waiting to see the pain management doc, to pick up the slow release pills for Husband. First dose, at 3 or 3.30pm. Then we see how it goes over the next 1 week.
So, please continue to keep Husband in your thoughts and prayers, that the slow release capsules work well for him, and that he can be completely lucid and completely pain free.
Till next time, stay safe, stay HEALTHY!
Anyway, back to the beginning. Husband slept from 11pm last night, to 6am this morning. I was supposed to give him his usual 4am dose of opiate, but when I saw how soundly he was sleeping I just did not have the heart to wake him up. I figured he needs the sleep desperately, and I can skip the dose till whatever time he wakes up. As it turned out, he woke up at 6am, so I gave him the opiate, in a lower dose (4ml, just for 2 hours), and he went back to sleep again.
HAD to get him up for breakfast before 8am, because otherwise he gets gastric pains and he really does NOT need any more "pains" to add discomfort to his already much abused body! Gave him the (hopefully) FINAL dose of the liquid opiate at 8.10am. Next round of meds is at 10.30am, and that will be 30mg of oxycontin. THEN the slow release capsules take over :-)
He is back to dozing again - still tired out from not sleeping for so many days and nights in a row. Still depressed because he is still having hallucinations and the twitches. BUT he is not as hyperactive as the last 2 days, probably because he just too physically exhausted after the hyperactive-ness of the last two days!!!
My Dad is probably already at the hospital by now, waiting to see the pain management doc, to pick up the slow release pills for Husband. First dose, at 3 or 3.30pm. Then we see how it goes over the next 1 week.
So, please continue to keep Husband in your thoughts and prayers, that the slow release capsules work well for him, and that he can be completely lucid and completely pain free.
Till next time, stay safe, stay HEALTHY!
Tuesday, December 08, 2009
2 nightmare nights in a row.
Last night was worse than the night before. Husband was like a hyper-active jack-in-the-box, leaping (literally) out of bed every 10 minutes or so, rushing to do various obscure things, see various unseen people, participate in various impossible meetings, parking unseen cars, trying to walk through walls to get to non-existent gyms, talking and arguing with invisible people, body jerking and twitching like a puppet on deranged strings whenever he was lying down. So, as you could guess, I had a rather active night too, trying to get him calmed down and back into bed each time he leapt out.
To add to the worry, he would move so fast that he was stumbling over his own feet, knocking his shins on the corner of the bed, and falling against the wall. I am just eternally grateful that he did not actually fall down!
I had to go to the supermarket today, so my parents came over to sit with Husband and keep an eye on him while I went off. I was only away for just over an hour and, when I came back, my Dad, just before he headed off to work, said to me "Now I know what you mean when you say he is hyper-active." Anyway, he went off to work, while my Mum stayed with me. She cooked lunch for her and me - with more than enough left overs to keep me going for a few days. There is plenty of food for Husband too, as I had done an Irish stew overnight for him, in the slow cooker. My Mum left around 5pm, when my Dad (on the way back from work) came and picked her up.
Anyway, spoke to the pain doc today. She says that this level of hallucination and twitching is NOT normal, and it looks like he is extremely sensitive to the effects of the drug.... more so when it is administered in liquid form and hits the system pretty hard right at initial dosage, and then when the dosage is repeated every 3 hours, it does not give the body time to calm down, and giving a higher dose (so that there are longer intervals between dosages) does not help as the higher dose would just make it worse!
So, she is going to take him off the liquid morphine, and put him on time-release morphine capsules, to be taken 3 times a day, at 8-hourly intervals. The theory being that, since these are time-release capsules, he will not get hit with a huge dose at any time during the 8 hours, from the time he takes the capsule to the time of the next dosage, but will instead have slow and steady release of a lower dosage of the opiate into his system.
Since I do not want to leave Husband alone at home, my Dad is going to go and collect the new meds from the pain doc tomorrow morning, and then drop them off for me, before he heads to work. This means that I can start him on the new meds tomorrow, commencing at 3pm, followed by 11pm, followed by 7am, and that will be the daily cycle. I have to keep him on this for one week, and then report back to the doc. If he handles it well, and there are no side effects, or MINIMAL side effects, then we are likely to stick to that. If not, well, we will cross that bridge when we come to it.
So, folks, that is the latest. Still not easy, and still got to get through tonight, with Husband already all set to be as hyper as he was last night. I am hoping and praying that the time release capsules work well, and minimise or eliminate the side effects.
Till next time, please continue to pray for Husband and, as always, stay safe, stay HEALTHY!
To add to the worry, he would move so fast that he was stumbling over his own feet, knocking his shins on the corner of the bed, and falling against the wall. I am just eternally grateful that he did not actually fall down!
I had to go to the supermarket today, so my parents came over to sit with Husband and keep an eye on him while I went off. I was only away for just over an hour and, when I came back, my Dad, just before he headed off to work, said to me "Now I know what you mean when you say he is hyper-active." Anyway, he went off to work, while my Mum stayed with me. She cooked lunch for her and me - with more than enough left overs to keep me going for a few days. There is plenty of food for Husband too, as I had done an Irish stew overnight for him, in the slow cooker. My Mum left around 5pm, when my Dad (on the way back from work) came and picked her up.
Anyway, spoke to the pain doc today. She says that this level of hallucination and twitching is NOT normal, and it looks like he is extremely sensitive to the effects of the drug.... more so when it is administered in liquid form and hits the system pretty hard right at initial dosage, and then when the dosage is repeated every 3 hours, it does not give the body time to calm down, and giving a higher dose (so that there are longer intervals between dosages) does not help as the higher dose would just make it worse!
So, she is going to take him off the liquid morphine, and put him on time-release morphine capsules, to be taken 3 times a day, at 8-hourly intervals. The theory being that, since these are time-release capsules, he will not get hit with a huge dose at any time during the 8 hours, from the time he takes the capsule to the time of the next dosage, but will instead have slow and steady release of a lower dosage of the opiate into his system.
Since I do not want to leave Husband alone at home, my Dad is going to go and collect the new meds from the pain doc tomorrow morning, and then drop them off for me, before he heads to work. This means that I can start him on the new meds tomorrow, commencing at 3pm, followed by 11pm, followed by 7am, and that will be the daily cycle. I have to keep him on this for one week, and then report back to the doc. If he handles it well, and there are no side effects, or MINIMAL side effects, then we are likely to stick to that. If not, well, we will cross that bridge when we come to it.
So, folks, that is the latest. Still not easy, and still got to get through tonight, with Husband already all set to be as hyper as he was last night. I am hoping and praying that the time release capsules work well, and minimise or eliminate the side effects.
Till next time, please continue to pray for Husband and, as always, stay safe, stay HEALTHY!
Monday, December 07, 2009
Hallucinations galore...
Since starting on this opiate on Wednesday, Husband has been constantly plagued by hallucinations. And, from what I can see, they are SCARY at times too. I am scared to leave him on his own now! Last night, at 9.30pm, I was in the living room, when Husband came out of the bedroom and headed into the kitchen. I asked him what he was looking for, and he said "chocolate ice cream". Now this really puzzled me, as he does not like chocolate ice cream, so I thought he had made a mistake and told him that if he wants, his favourite vanilla ice cream is in the 2nd fridge. He said No, he needs CHOCOLATE - and when I asked WHY, he said "For HIM, you know, the guy with the big nose." !!!! I asked him WHICH GUY, and reminded him that we are at home, and there is nobody else here with us... and he says I KNOW, HE IS DOWNSTAIRS HAVING A MEETING, AND I PROMISED HIM CHOC ICE CREAM WHEN HE FINISHES.
Oh man! I got him back into the bedroom, told him again that there is nobody except us, there is no meeting taking place downstairs, and we are not expecting anyone... 5 minutes later, I was back in the living room again and I see Husband, now with his shorts on, heading out the front door. I YELLED his name and ran after him, and asked him where he was going - and he says TO BUY ICE CREAM. Oh boy, oh boy... now that scared me. What would have happened if he had walked out and I had not noticed? If I had been in the study, I may not have seen him walk past! That scared me! A LOT!!
And last night was the worst yet. Neither of us slept - Husband was up and down all night, talking, yelling, seeing things that were not there, reacting to people that were not there. I was so worried that he might just walk out the door again, that I could not sleep at all. Getting him back into bed each time he got out of bed was exhausting too. Most of the time he doesn't even realise that he is at home in his own room, in his own bed. Once he asked me, ARE WE IN PERTH?
I am just hoping that these hallucinations will not last for much longer, as I am not sure how much longer I can last without any sleep at all. Luckily, during the day, Husband does manage to get quite a lot of sleep, so that is one blessing, but I find it hard to sleep during the day anyway, and now with these 'disturbances' at night, I can't sleep at night either. Hmmm, how long can one keep going without sleep?
I have to check with my parents if they can come and keep an eye on Husband tomorrow morning, as I have to go to the supermarket, and I don't dare leave Husband alone at home - too scared to do that, in case, by the time I get home, he has gone out looking for ice cream or something else!
Enough said for now. Please continue to keep Husband in your thoughts and prayers, that the hallucinations will end SOON, so that he can get back to living a half-way NORMAL life again.
Till next time, stay safe, stay HEALTHY!
Oh man! I got him back into the bedroom, told him again that there is nobody except us, there is no meeting taking place downstairs, and we are not expecting anyone... 5 minutes later, I was back in the living room again and I see Husband, now with his shorts on, heading out the front door. I YELLED his name and ran after him, and asked him where he was going - and he says TO BUY ICE CREAM. Oh boy, oh boy... now that scared me. What would have happened if he had walked out and I had not noticed? If I had been in the study, I may not have seen him walk past! That scared me! A LOT!!
And last night was the worst yet. Neither of us slept - Husband was up and down all night, talking, yelling, seeing things that were not there, reacting to people that were not there. I was so worried that he might just walk out the door again, that I could not sleep at all. Getting him back into bed each time he got out of bed was exhausting too. Most of the time he doesn't even realise that he is at home in his own room, in his own bed. Once he asked me, ARE WE IN PERTH?
I am just hoping that these hallucinations will not last for much longer, as I am not sure how much longer I can last without any sleep at all. Luckily, during the day, Husband does manage to get quite a lot of sleep, so that is one blessing, but I find it hard to sleep during the day anyway, and now with these 'disturbances' at night, I can't sleep at night either. Hmmm, how long can one keep going without sleep?
I have to check with my parents if they can come and keep an eye on Husband tomorrow morning, as I have to go to the supermarket, and I don't dare leave Husband alone at home - too scared to do that, in case, by the time I get home, he has gone out looking for ice cream or something else!
Enough said for now. Please continue to keep Husband in your thoughts and prayers, that the hallucinations will end SOON, so that he can get back to living a half-way NORMAL life again.
Till next time, stay safe, stay HEALTHY!
Sunday, December 06, 2009
One small step forward
Husband is slightly more used to the opiate now. When he is sitting up, there are zero hallucinations, and he talks absolute sense. It is only when he is lying down that he still has the hallucinations, the imaginary conversations, the twitching, etc. I have also adjusted dosages and timings slightly. Each opiate dose is (as of 4am today) at 6ml, so that he can go for 3 hours without being disturbed for the next dose. So, at 4am and then at 7am, 2 doses of 6ml each. Then at 10am, 3 Oxycontin tablets, which keeps him going for about 4 hours. Then at 2pm, 5pm and 8pm, opiate doses at 6ml each. Then at 11pm, 3 Oxycontin tablets and one Amitryptilline tablet which keeps him going till 4am again!
The target is to increase the dosage slowly, till he can go for at least 4 - 5 hours at a stretch. Can't rush it, as I also need him to get used to the side effects first!! I have had reassurance from 2 different sources, who have had first hand experience of seeing their loved ones going through similar situations, that the body DOES get used to the side effects, and once the body is adapted, then the pain killer aspect of the opiate continues, without the dozy aspect! Of course, each person takes different durations to adapt, but it DOES happen. So that was quite reassuring!
Husband's son (J) called yesterday and asked a question which he has been wanting to ask for a long time, but was a little bit scared to ask. Since Husband was not up to taking the call, J talked to me and finally asked me that question "What is the REAL prognosis". That is a slightly oblique way of asking "Is my Dad going to die?" The same question has been asked by Husband's younger daughter as well, and I am sure the same question is in a lot of peoples minds too.
Well, I guess everyone has to die at some point or other, and Husband is already 70 (still the best looking 70 in the world!!!). BUT, not anytime soon!!! The oncologists are still amazed at the cancer progression in his body. For one thing, all his soft organs (liver, kidney, lungs) are CLEAN. There is very very little cancer in the body. Even the cancer in the bone seems to be stable as it has not spread (just hit enough to cause the extreme pain he is in!!!!). As the onco's say "The disease weight in his body is VERY VERY light". The other thing that puzzles the onco's is the fact that it spread to the bone, without touching the soft organs. For colon cancer, metastasis to the bone is rare already... and metastasis to the bone without TOUCHING the soft organs - now that really is an impossibility as far as they are concerned. But then, trust Husband to be that 1 in 10 million! He will have to do chemo for the rest of his life, to ensure that the cancer is kept under control, but... he and I still have a few years to go together :-D.
My most fervent prayer is that we are able to ENJOY the time we have together, without the awful pain that Husband is suffering. I want to take him to the UK again next year (possibly our last trip there) to meet his family again, and our closest friend there (Kevin), and a few other close friends. I want to take him to Tg Rhu at Langkawi again, and to Phuket Pavilions on Phuket, and to Berjaya on Tioman Island. I want to be able to take him to see all our family and friends in both KL and SG, who have been here for us in this very very difficult time, and who I know will continue to be with us. For that, he needs to be pain free, and able to travel... so, please pray for him that he should find total relief from this pain, and that the cancer be eradicated.
That's it for now... till next time, please continue to keep Husband in your thoughts and prayers, and... stay safe, stay HEALTHY!
The target is to increase the dosage slowly, till he can go for at least 4 - 5 hours at a stretch. Can't rush it, as I also need him to get used to the side effects first!! I have had reassurance from 2 different sources, who have had first hand experience of seeing their loved ones going through similar situations, that the body DOES get used to the side effects, and once the body is adapted, then the pain killer aspect of the opiate continues, without the dozy aspect! Of course, each person takes different durations to adapt, but it DOES happen. So that was quite reassuring!
Husband's son (J) called yesterday and asked a question which he has been wanting to ask for a long time, but was a little bit scared to ask. Since Husband was not up to taking the call, J talked to me and finally asked me that question "What is the REAL prognosis". That is a slightly oblique way of asking "Is my Dad going to die?" The same question has been asked by Husband's younger daughter as well, and I am sure the same question is in a lot of peoples minds too.
Well, I guess everyone has to die at some point or other, and Husband is already 70 (still the best looking 70 in the world!!!). BUT, not anytime soon!!! The oncologists are still amazed at the cancer progression in his body. For one thing, all his soft organs (liver, kidney, lungs) are CLEAN. There is very very little cancer in the body. Even the cancer in the bone seems to be stable as it has not spread (just hit enough to cause the extreme pain he is in!!!!). As the onco's say "The disease weight in his body is VERY VERY light". The other thing that puzzles the onco's is the fact that it spread to the bone, without touching the soft organs. For colon cancer, metastasis to the bone is rare already... and metastasis to the bone without TOUCHING the soft organs - now that really is an impossibility as far as they are concerned. But then, trust Husband to be that 1 in 10 million! He will have to do chemo for the rest of his life, to ensure that the cancer is kept under control, but... he and I still have a few years to go together :-D.
My most fervent prayer is that we are able to ENJOY the time we have together, without the awful pain that Husband is suffering. I want to take him to the UK again next year (possibly our last trip there) to meet his family again, and our closest friend there (Kevin), and a few other close friends. I want to take him to Tg Rhu at Langkawi again, and to Phuket Pavilions on Phuket, and to Berjaya on Tioman Island. I want to be able to take him to see all our family and friends in both KL and SG, who have been here for us in this very very difficult time, and who I know will continue to be with us. For that, he needs to be pain free, and able to travel... so, please pray for him that he should find total relief from this pain, and that the cancer be eradicated.
That's it for now... till next time, please continue to keep Husband in your thoughts and prayers, and... stay safe, stay HEALTHY!
Saturday, December 05, 2009
Emo, emo, emo.... getting the better of me
I've realised that, in the last few days particularly, every little thing just makes me burst into tears. I don't know if that is good or bad. I try to think of it like a safety valve that lets off steam, thereby preventing unwanted explosions :-(.
Every time I see Ken in his sleep, hallucinating, talking to people not there, gesticulating with his hands, I cry. When he gets up for breakfast and can barely stay up long enough to eat and go back to bed, I cry. When I type my blog and re-live the things that I am typing about, I cry (like now!!). When my family and my friends call to find out what is happening, I cry. I just got a beautiful, beautiful Little Teddy, plush, chubby, and cute, and a bunch of lovely pink roses, from Tony and Peng, and, what happens? I CRY!!! I can't even call them to say Thank you, because I am crying too much - so I have to sms my thanks - how crass is that?
So, if you call me, and I am in tears, please forgive me - it is just my safety valve, I am OK, really!
Till next time, please continue to keep Husband in your thoughts and prayers, FIRST to get rid of the side effects and get the pain under control and NEXT (equally important) to GET RID OF THE CANCER.
And, of course, don't forget... stay safe, stay HEALTHY!
Every time I see Ken in his sleep, hallucinating, talking to people not there, gesticulating with his hands, I cry. When he gets up for breakfast and can barely stay up long enough to eat and go back to bed, I cry. When I type my blog and re-live the things that I am typing about, I cry (like now!!). When my family and my friends call to find out what is happening, I cry. I just got a beautiful, beautiful Little Teddy, plush, chubby, and cute, and a bunch of lovely pink roses, from Tony and Peng, and, what happens? I CRY!!! I can't even call them to say Thank you, because I am crying too much - so I have to sms my thanks - how crass is that?
So, if you call me, and I am in tears, please forgive me - it is just my safety valve, I am OK, really!
Till next time, please continue to keep Husband in your thoughts and prayers, FIRST to get rid of the side effects and get the pain under control and NEXT (equally important) to GET RID OF THE CANCER.
And, of course, don't forget... stay safe, stay HEALTHY!
Friday, December 04, 2009
Updates on dosages and outcomes
Well, for now at least, we are stabilised at a 4ml dosage every 2 hours. Except for 10.30am and 10.30pm when I give Husband the oxycontin, and that keeps him going for 4 hours before we resume the morphine. There is a SLIGHT (VERY slight) reduction in the hallucinations and other strange side effects, and I am hoping that every day will see an improvement to the point that the pain will be killed but there will be no side effects! Fingers crossed.
He is doing his best to keep eating and drinking. The easiest thing for him to eat is always stew, so I make sure that is always there for him. Most of the time I end up with plenty of food in the house for Husband, but nothing for me! Good thing it is easy (and cheap) for me to get take-away food in this country :-). On those occasions when Husband finds it hard to EAT anything, then I make sure he drinks Ensure or Prosure protein drinks - both recommended by the gastro surgeon, to help build him back up. At least 3 of those in one day.
People have been asking me - what about the chemo? When are you continuing? Well, the onco in the KL hospital had actually said that, considering how amazingly "light" the cancer weight is in Husband's body, we should take a break while he is feeling so weak and in pain. However, of course, we are both a bit concerned about not having done chemo since end October, so I called our onco in Melaka, and asked him if he could recommend us to a doctor at the General Hospital KL. He advised us to go to the University Malaya Medical Centre (UMMC), as they have a brand new oncology department, he knows the oncologists there personally, and they also use the "latest and greatest" drugs (similar to those that he himself uses), whereas GHKL would NOT have the leading edge drugs. All I have to do now is to figure out WHEN Husband is able to go for chemo, and call our onco in Melaka, and he will call the onco in UMMC and make the arrangements, and give us a referral letter. The referral is necessary as UMMC is a government hospital and anyone going there, particularly non-Malaysian, needs a referral (other than for A&E of course!).
Another major plus point of UMMC is that it is just 10-15 minutes drive from our home! And, of course, the fact that it is a govt hospital hopefully means that we wont have to pay the rather exorbitant prices of private hospitals for chemo drugs. I doubt if we will get as good a price as our onco in Melaka (due to his friendship with my brother), but the drive there is just too hard for Husband at the moment.
That's it for now folks. Please continue to keep Husband in your thoughts and prayers that he adapts well to the latest pain meds he is taking, and that it WILL help to control the pain well... and, of course, that the cancer WILL be beaten.
Till next time, stay safe, stay HEALTHY!
He is doing his best to keep eating and drinking. The easiest thing for him to eat is always stew, so I make sure that is always there for him. Most of the time I end up with plenty of food in the house for Husband, but nothing for me! Good thing it is easy (and cheap) for me to get take-away food in this country :-). On those occasions when Husband finds it hard to EAT anything, then I make sure he drinks Ensure or Prosure protein drinks - both recommended by the gastro surgeon, to help build him back up. At least 3 of those in one day.
People have been asking me - what about the chemo? When are you continuing? Well, the onco in the KL hospital had actually said that, considering how amazingly "light" the cancer weight is in Husband's body, we should take a break while he is feeling so weak and in pain. However, of course, we are both a bit concerned about not having done chemo since end October, so I called our onco in Melaka, and asked him if he could recommend us to a doctor at the General Hospital KL. He advised us to go to the University Malaya Medical Centre (UMMC), as they have a brand new oncology department, he knows the oncologists there personally, and they also use the "latest and greatest" drugs (similar to those that he himself uses), whereas GHKL would NOT have the leading edge drugs. All I have to do now is to figure out WHEN Husband is able to go for chemo, and call our onco in Melaka, and he will call the onco in UMMC and make the arrangements, and give us a referral letter. The referral is necessary as UMMC is a government hospital and anyone going there, particularly non-Malaysian, needs a referral (other than for A&E of course!).
Another major plus point of UMMC is that it is just 10-15 minutes drive from our home! And, of course, the fact that it is a govt hospital hopefully means that we wont have to pay the rather exorbitant prices of private hospitals for chemo drugs. I doubt if we will get as good a price as our onco in Melaka (due to his friendship with my brother), but the drive there is just too hard for Husband at the moment.
That's it for now folks. Please continue to keep Husband in your thoughts and prayers that he adapts well to the latest pain meds he is taking, and that it WILL help to control the pain well... and, of course, that the cancer WILL be beaten.
Till next time, stay safe, stay HEALTHY!
Thursday, December 03, 2009
Dopey, and Sleepy
It feels like I have two of the seven dwarfs living here, both encapsulated in Husband's body :-(. Started yesterday late morning with 5ml of morphine. And, Yes, it is effective in controlling the pain, for just over 2 hours at that dosage. But it makes Husband extremely hallucinatory, light headed, twitchy, barely able to keep his eyes open. Last night was a living nightmare - Husband spent all night talking to people who were not there (well, not that I could see anyway), holding imaginary tools, fixing imaginary problems, conducting an imaginary orchestra, arms and legs constantly twitching. And I had to keep calming him down, trying to get him to relax, trying to get him to sleep. Not successful, though :-(.
This morning at 8.30am I started with the same 5ml dosage, but, for the next one, reduced it to 3ml, to see if it could still control the pain for 2 hours, and to see whether the side effects are any less. The answers: Yes, the pain is still under control for 2 hours, and Yes, the side effects are marginally less. Have now done two rounds at 3ml each, and the next round I am going to try for 2ml. I have to try and find the balance between pain control and NO hallucinations, if at all possible.
It is so so heartbreaking to see Husband like this. He is totally out of it, totally not "here" with me. At least before he would remember to sit up and drink from time to time... but now he is so "out of it" that he doesn't even remember to sit up, let alone drink. And getting him to eat and drink is still as difficult as ever!
Well, the doctor said that we have to take at least 1 week to let him get used to the opiate... so I have to continue fine tuning to find the right balance and just pray that I CAN. I cannot bear to see Husband like this - I've been in tears pretty much the whole morning, and it is just so devastating to see my beautiful and wonderful Husband like this.
Please keep on praying that I will find the right dosage for Husband that will work well to suppress the pain, and yet allow him to function perfectly normally. Because if this doesn't work, we may have to go for the final option of inserting a cannula into the spine.
Please continue to keep Husband in your thoughts and prayers, and me that I have the strength to keep going for his sake.
Till next time, stay safe, stay HEALTHY!
This morning at 8.30am I started with the same 5ml dosage, but, for the next one, reduced it to 3ml, to see if it could still control the pain for 2 hours, and to see whether the side effects are any less. The answers: Yes, the pain is still under control for 2 hours, and Yes, the side effects are marginally less. Have now done two rounds at 3ml each, and the next round I am going to try for 2ml. I have to try and find the balance between pain control and NO hallucinations, if at all possible.
It is so so heartbreaking to see Husband like this. He is totally out of it, totally not "here" with me. At least before he would remember to sit up and drink from time to time... but now he is so "out of it" that he doesn't even remember to sit up, let alone drink. And getting him to eat and drink is still as difficult as ever!
Well, the doctor said that we have to take at least 1 week to let him get used to the opiate... so I have to continue fine tuning to find the right balance and just pray that I CAN. I cannot bear to see Husband like this - I've been in tears pretty much the whole morning, and it is just so devastating to see my beautiful and wonderful Husband like this.
Please keep on praying that I will find the right dosage for Husband that will work well to suppress the pain, and yet allow him to function perfectly normally. Because if this doesn't work, we may have to go for the final option of inserting a cannula into the spine.
Please continue to keep Husband in your thoughts and prayers, and me that I have the strength to keep going for his sake.
Till next time, stay safe, stay HEALTHY!
Wednesday, December 02, 2009
We met the Pain Management Specialist today!
First of all, I must say that the pain management specialist (Dr MC) is a really nice lady! She made us go through a very thorough de-brief on what has been happening to date, plus all the info about what meds Husband is on now, which, as I told her, are as follows:
- 9am : 20mg Oxycontin
- 3pm : 2xUltracet, 1x200mg Celebrex
- 9pm : 30mg Oxycontin
- 3am : 2xUltracet, 1x200mg Celebrex
She says there are several options to try, starting with the most straight forward and working our way up to the most 'complex'. In fact, when she heard that Husband is already on Oxycontin, she said that already ruled out the simplest meds, as that would have been her first options. So, we have gone straight to the slightly stronger options: For now, she has put Husband on liquid morphine, to be administered as necessary, 5ml initial dosage. If not enough to kill the pain, then another 5ml when the pain breaks through... Which also means that subsequent daily first dosage could then be 10ml. If the 5ml makes him 'high' and hallucinatory, then reduce to 2.5ml. In addition, she recommended that we continue with the oxycontin I am already giving him (20mg at 9am, 30mg at 9pm), discontinue the Ultracet, but continue with the 200mg Celebrex ONCE a day at 3pm. If he can handle more pills, then to take 2 normal Panadol at every meal (4 times a day) - though, given the choice, Husband does not want to add MORE pills unnecessarily to his overall dosages! She has also prescribed something called Amitryptilline, HALF-tablet to start, to be taken at night, before sleeping. If he handles it well (ie, he doesnt wake up the next morning feeling like he has had a hangover), then increase the dosage to ONE tablet nightly.
She wants me to adjust the opiate dosage till we find one that suits him, at whatever interval that suits him (eg, she said if 5ml works perfectly, but only works for 1 hour, then take another 5ml every hour.). I dont think it will come to that frequency, but I have a feeling that it will be at least 4 times a day, once we find the right dosage. I know that the Oxycontin only seems to work for about 6 - 7 hours, which is why I had the Ultracet/Celebrex combination dosage set for 6 hours after the Oxycontin! So if the morphine is similar (since they are both opiates), then 6 hourly might work well. We will have to see how it goes. So far, since we got home, it seems that the 5ml dosage keeps Husband going for TWO hours. I will continue with the 5ml dosage for the rest of the day, till he goes to sleep, and tomorrow morning, start with an increased (10ml) dosage to see how long that can keep him going. Dr MC did warn us it will be all trial and error, as every single person responds differently.
What are the other options open to us? Not a lot more actually. One other drug is methadone, but that is, apparently, somewhat difficult to get here.
Final possibility, if we find that the opiates just make Husband too "woozy" and hallucinatory, would be to put an epidural (a very very fine tube) directly into the spine, with the other end of the tube connected to a "port" (somewhat like the chemoport he already has implanted in his chest for chemo infusions). This port would be embedded below the ribs, and would be used for direct opiate injection 2 - 3 times a day, into the spinal fluid - thereby bypassing the gastric and blood systems, which means it won't cause constipation and won't cause hallucinations or dizziness - and directly targetting the spine which is where all the pain is concentrated. The port could also be used for continuous infusion - where the opiate, diluted in some solution, is administered over a period of time. In such a case, the solution+opiate would be in a small bag, which can be clipped to a belt, and then connected to the port for ongoing infusion. Which also means that Husband would not be restricted in his movements, and would not need to be in hospital.
That's it for now. We are due to see her again on 30th Dec, though I can always pick up re-prescription of the morphine earlier IF required. Please continue to keep Husband in your thoughts and prayers that this change of painkiller will work, and that we will be able to quickly work out the ideal dosage to relieve him from pain on a continuous basis.
So, till next time, remember... stay safe, stay HEALTHY!
- 9am : 20mg Oxycontin
- 3pm : 2xUltracet, 1x200mg Celebrex
- 9pm : 30mg Oxycontin
- 3am : 2xUltracet, 1x200mg Celebrex
She says there are several options to try, starting with the most straight forward and working our way up to the most 'complex'. In fact, when she heard that Husband is already on Oxycontin, she said that already ruled out the simplest meds, as that would have been her first options. So, we have gone straight to the slightly stronger options: For now, she has put Husband on liquid morphine, to be administered as necessary, 5ml initial dosage. If not enough to kill the pain, then another 5ml when the pain breaks through... Which also means that subsequent daily first dosage could then be 10ml. If the 5ml makes him 'high' and hallucinatory, then reduce to 2.5ml. In addition, she recommended that we continue with the oxycontin I am already giving him (20mg at 9am, 30mg at 9pm), discontinue the Ultracet, but continue with the 200mg Celebrex ONCE a day at 3pm. If he can handle more pills, then to take 2 normal Panadol at every meal (4 times a day) - though, given the choice, Husband does not want to add MORE pills unnecessarily to his overall dosages! She has also prescribed something called Amitryptilline, HALF-tablet to start, to be taken at night, before sleeping. If he handles it well (ie, he doesnt wake up the next morning feeling like he has had a hangover), then increase the dosage to ONE tablet nightly.
She wants me to adjust the opiate dosage till we find one that suits him, at whatever interval that suits him (eg, she said if 5ml works perfectly, but only works for 1 hour, then take another 5ml every hour.). I dont think it will come to that frequency, but I have a feeling that it will be at least 4 times a day, once we find the right dosage. I know that the Oxycontin only seems to work for about 6 - 7 hours, which is why I had the Ultracet/Celebrex combination dosage set for 6 hours after the Oxycontin! So if the morphine is similar (since they are both opiates), then 6 hourly might work well. We will have to see how it goes. So far, since we got home, it seems that the 5ml dosage keeps Husband going for TWO hours. I will continue with the 5ml dosage for the rest of the day, till he goes to sleep, and tomorrow morning, start with an increased (10ml) dosage to see how long that can keep him going. Dr MC did warn us it will be all trial and error, as every single person responds differently.
What are the other options open to us? Not a lot more actually. One other drug is methadone, but that is, apparently, somewhat difficult to get here.
Final possibility, if we find that the opiates just make Husband too "woozy" and hallucinatory, would be to put an epidural (a very very fine tube) directly into the spine, with the other end of the tube connected to a "port" (somewhat like the chemoport he already has implanted in his chest for chemo infusions). This port would be embedded below the ribs, and would be used for direct opiate injection 2 - 3 times a day, into the spinal fluid - thereby bypassing the gastric and blood systems, which means it won't cause constipation and won't cause hallucinations or dizziness - and directly targetting the spine which is where all the pain is concentrated. The port could also be used for continuous infusion - where the opiate, diluted in some solution, is administered over a period of time. In such a case, the solution+opiate would be in a small bag, which can be clipped to a belt, and then connected to the port for ongoing infusion. Which also means that Husband would not be restricted in his movements, and would not need to be in hospital.
That's it for now. We are due to see her again on 30th Dec, though I can always pick up re-prescription of the morphine earlier IF required. Please continue to keep Husband in your thoughts and prayers that this change of painkiller will work, and that we will be able to quickly work out the ideal dosage to relieve him from pain on a continuous basis.
So, till next time, remember... stay safe, stay HEALTHY!
Tuesday, December 01, 2009
Whole day spent WAITING....
Thank God I did not take Husband with me today - he would have either blown up from the sheer frustration of WAITING to see the doctors, or expired from sheer exhaustion! Either way would not have been good :-p
Got to the hospital at 11am, picked up the MRI films, and headed straight to the ortho surgeons clinic. Waited, and waited, and waited, and waited.... FINALLY got to see him at 1.10pm!!! SO MANY people to see him today, and his is not a speciality where a patient is in and out in 2 minutes! He takes at least 20 minutes or longer, with each patient!
When it came to my turn, I did not take too much of his time. His conclusions were as follows:
- There seems to be no muscle or nerve degeneration, not even in the bedsore location.
- The problem lies with the spinal bones in the sacrum area, which is where the cancer spread to. Specifically the bones numbered S1 and S2 which are precisely the pressure points when sitting or lying down
- He does not think that surgery is going to be helpful, nor cortisone injections, and he feels that the pain management doc can be the most help.
- He suggested I also go see the oncologist (Dr Low) who did the radiotherapy (end Oct), to double check if anything further can be done.
So, from his clinic on the 2nd floor of the hospital, I went to see Dr Low at his clinic, just one floor below. Was there at 1.30pm, was told he had just gone for lunch... so I went to have my lunch, then got a magazine to read while waiting for him. Finally got to see him at 3.20pm, and this is what he said:
- He checked the MRI, confirmed that the radiotherapy that was done should help BUT could take up to 3 months to take full effect.
- He said it helps in 80% of cases... which means, of course, that Husband could fall into the 20% that are not helped by RT
- It has been just over 1 month since the RT was done... so that leaves potentially room for some improvement on the pain over the next 2 months (assuming again that Husband falls into the 80% who ARE helped by RT).
- He said if the pain specialist we are going to see has got strong anaesthesiologist background, she should definitely be able to help. He said she may recommend something like a nerve block which can be effective for months at a time.
So... I guess it all comes down to what the pain management specialist can do, when we see her tomorrow. Fingers crossed!
Anyway, was supposed to go the supermarket to do some long overdue re-stocking of our larder.... but by this time I was just too tired and fed up, so I just came straight home. It is funny how exhausting it is to just sit and wait :-p.
So, tomorrow morning, by 8am, my Dad will be at our house - as he has taken my Mum to see this Pain Management Specialist before and he knows the way there - so he is our navigator :-D.
Please continue to keep Husband in your thoughts and prayers, that the Pain doctor can help to relieve him of this never-ending agony. And, till next time, stay safe, stay HEALTHY.
PS: The 2 doctors today were both kind enough NOT to charge me for their consultation time - which I thought was very nice of them!
Got to the hospital at 11am, picked up the MRI films, and headed straight to the ortho surgeons clinic. Waited, and waited, and waited, and waited.... FINALLY got to see him at 1.10pm!!! SO MANY people to see him today, and his is not a speciality where a patient is in and out in 2 minutes! He takes at least 20 minutes or longer, with each patient!
When it came to my turn, I did not take too much of his time. His conclusions were as follows:
- There seems to be no muscle or nerve degeneration, not even in the bedsore location.
- The problem lies with the spinal bones in the sacrum area, which is where the cancer spread to. Specifically the bones numbered S1 and S2 which are precisely the pressure points when sitting or lying down
- He does not think that surgery is going to be helpful, nor cortisone injections, and he feels that the pain management doc can be the most help.
- He suggested I also go see the oncologist (Dr Low) who did the radiotherapy (end Oct), to double check if anything further can be done.
So, from his clinic on the 2nd floor of the hospital, I went to see Dr Low at his clinic, just one floor below. Was there at 1.30pm, was told he had just gone for lunch... so I went to have my lunch, then got a magazine to read while waiting for him. Finally got to see him at 3.20pm, and this is what he said:
- He checked the MRI, confirmed that the radiotherapy that was done should help BUT could take up to 3 months to take full effect.
- He said it helps in 80% of cases... which means, of course, that Husband could fall into the 20% that are not helped by RT
- It has been just over 1 month since the RT was done... so that leaves potentially room for some improvement on the pain over the next 2 months (assuming again that Husband falls into the 80% who ARE helped by RT).
- He said if the pain specialist we are going to see has got strong anaesthesiologist background, she should definitely be able to help. He said she may recommend something like a nerve block which can be effective for months at a time.
So... I guess it all comes down to what the pain management specialist can do, when we see her tomorrow. Fingers crossed!
Anyway, was supposed to go the supermarket to do some long overdue re-stocking of our larder.... but by this time I was just too tired and fed up, so I just came straight home. It is funny how exhausting it is to just sit and wait :-p.
So, tomorrow morning, by 8am, my Dad will be at our house - as he has taken my Mum to see this Pain Management Specialist before and he knows the way there - so he is our navigator :-D.
Please continue to keep Husband in your thoughts and prayers, that the Pain doctor can help to relieve him of this never-ending agony. And, till next time, stay safe, stay HEALTHY.
PS: The 2 doctors today were both kind enough NOT to charge me for their consultation time - which I thought was very nice of them!
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