For those who may not yet know, my dearly beloved Husband passed away today.
It had been such a difficult and painful time for him, full of suffering, full of pain, full of anguish, since February 7th 2009, the day we found out that his colon was blocked, and he needed an operation, and it was likely cancer. Since then he had been through hell, suffering through bed sores, chemo, intestinal infections, purging/puking, gastro paresis, difficulty in breathing, getting weaker and weaker, and less mobile and, worst of all, constantly increasing pain.
All this came to an end today.
He had been lying still all morning, trying to clear his throat of the phlegm build up. The nurses from the hospice (Jan, Idayu, and Azim) came at 1pm. First thing they did was help to lay him on his side, and bandage the beginnings of a bed sore on his right upper bum, and one on his right heel. Then they propped him up in a reclining position, helped to clean out his right eye, which was getting sore, washed out his mouth, wiped his face, and were preparing liquid meds to inject into him, as he was not able to swallow any of his pills. While Idayu and Azim were doing this, Jan and I sat in the room with him. I was sitting on his right side, holding his hand and just talking to him, telling him that I was with him.
At 2.20pm, he looked at Jan, and said to her, very very weakly, "Thank you, thank you", then he turned to me, and said "I love you", and closed his eyes and seemed to go to sleep. He drew a couple of deep, shuddering breaths, and then we could see the pulse in his throat getting slower and slower, and I just started crying and crying and could not stop. Jan called Idayu and Azim in, and when his pulse seemed to stop, I asked them to please see if he was still breathing, so they used their stethoscope to check, and confirmed he had stopped breathing. This was 2.30pm.
I could not stop crying for a while, but I called my Dad, and he immediately said he would come straight over from work. Idayu and Azim had to leave, as they had other patients to go to, and I passed them all of Husband's medications that he would not need again, as I figured it would come in useful for another patient. I also gave them Husband's miniature fridge, as I am sure there will be some ill soul who would be happy to have it.
My Dad turned up 20 minutes later, and he immediately told me not to worry about anything, he would see to it all - so he took Husband's passport, his medical reports, etc, and went to the police station to report his death and get a burial certificate. In the meantime my Mum turned up, then my dear friend Jodi, and they stayed with me. Jan left at 4.20pm, when Dr Sylvia from the hospice came to get her. Jodi had to leave a little while later. My sister then turned up - she had cancelled all her classes for the rest of the day, and taken emergency leave for tomorrow. My Dad came back with the burial certificate around 5pm, and then called the undertaker to come for Husband. They came less than an hour later, but since we wanted my brother and his wife and daughter, and my sisters husband and kids, to say their goodbyes to Husband first, we waited till they turned up, and everyone had the chance to say their goodbyes, before we finally allowed them to take Husband with them.
I gave them his jacket (the one he wore when we got married), trousers, shoes, shirt, tie, belt, socks. Selected a nice coffin, and urn for his ashes, and they confirmed that the appointment at the crematoria was scheduled for 2pm tomorrow.
My Dad organised a simple funeral service at our house in PJ, for tomorrow at 1pm, with my sister to say a little bit about my beloved Husband, and our friend to say the prayer for him. From there we go to the PJ crematoria, and we get to say our final goodbyes to a beautiful, beautiful man - my best friend, my dearest husband, the love of my life.
I managed to sms all our friends, my Dad and my sister also helped to pass the word around. My entire family came - only missing my #2 niece and my #1 nephew (my brothers 2 younger children) as they are in NZ. I do not know how I could have managed without their support - and it being my Mums birthday, we ordered home delivery dinner, to celebrate her birthday, and to celebrate Husbands life. My friends also called, sms'ed and dropped by - Jessie, Helen, TT, Fay, Kunjumon, Gigi, Herman, Liau, Val, Ida, Su, Ravi, thank you for finding the time to drop by.
I am not crying now, but it is going to be difficult to sleep without him by my side. I cannot believe that I will not see him again, and I do not know what it is going to be like to keep going without him near me day by day. This time I ask you to pray for me, that I have the strength to continue without him by my side.
But I know also, that I will always have him in my heart, and I will never forget him.
I love you Kenneth, and I will always love you. Please make sure that in our next lives we meet sooner, so that we may have more time together. Wait for me. Please. I love you.
Wednesday, February 10, 2010
Tuesday, February 09, 2010
It's been a tough week
It really has been difficult.
Last week, Tuesday morning, called for an ambulance to take Husband to Selayang hospital, as he was just too exhausted and weak to stay on his feet long enough to get down to the car park and into our car. SO... I packed a bag with all the stuff he and I would need for the 7 day stay at the hospital, and my Dad and Mum came and took the bag to the hospital for me, while I went in the ambulance with Husband.
Our wonderful pain management doctor had organised everything - first class single room arranged, admission form already at the ward. All I had to do was get Husband settled in, and then take the admission form and go down to the registration desk and register him. He was registered as a local resident, so the deposit I had to pay was fairly minimal.
Bearing in mind that Selayang is a gov't hospital, I must say that the facilities, and the staff, are as excellent as the private hospitals. The only thing missing from our VERY large first class single room was a fridge - and I had anticipated that problem and brought along the miniature fridge that usually sits on Husband's bed side table - otherwise it would have been an even bigger problem getting Husband to drink as he will not drink warm water! Even the shower facilities here were better than in the private hospital - for one thing the water pressure was excellent and, for another, they actually have shower curtains so I didn't have to worry about inundating the whole bathroom when I showered each day! As for my 'bed', as always, it was one of those pool recliners - metal frame with plastic strips woven across it. The hospital provided me with a pillow and a blanket - I lined the recliner with the blanket and used my own fleece as cover. I guess I am used to what facilities are like in hospitals to come prepared with blankets, fleeces, towels, toiletries, etc, in addition to clothes and books, of course.
They started Husband on the ketamine burst treatment the very same afternoon. Basically a syringe, filled with a mix of 100ml of Ketamine, plus 5ml of Haloperidol (to counteract hallucinations, and aid him in sleeping), plus whatever buffering solution, connected to a battery operated pump (the whole contraption not much longer than from my finger tips to the base of my palm), with a tube running from the syringe to the IV port that was connected to Husband's chemo-port (THANK GOD for the chemo-port. I could not imagine them having to hunt for a vein in his poor arms!!). It took them a couple of minutes to make sure the chemo-port was still clear - first by injecting heparin solution in, and then by pulling back to make sure blood comes back through the tube. If both work well (in and out), then the port is clear and can be used. A single syringe of the ketamine concoction was dispensed in this method over a 24-hour period. Each day, as one syringe emptied, it was removed and another syringe, with a fresh batch of the ketamine concoction, put in its place. This continued through till Saturday afternoon, when the decision was made NOT to continue with the final syringe as Husband was showing a hyper-sensitivity to the drug and was already responding.
The whole point of this was to "reset" his pain centre, and to sensitise his body to morphine so that a lower dose of morphine would be as effective as a higher dose of morphine was previously (pre-ketamine).
So, that was the procedure, in a nutshell.... so why was it a tough week? Because the drugs hit Husband very hard - he was dazed, doped, totally "out-of-it". He lost his appetite completely - and in the one week he was there, he absolutely refused to eat anything. I was only able to coax him to eat a few mouthfuls of rice broth (porridge) each evening, nothing more. He drank a little bit too - but even that was difficult. He DID manage to sleep the first 3 nights, but I could not sleep as I was just too worried that he would wake and be confused in this new environment - so every creak of his hospital bed and I would be out of my recliner to check on him. Not conducive to sleep :-(.
Even though the treatment completed on Saturday, they wanted to keep Husband in until Monday to keep him under observation. The treatment does seem to have worked, as his morphine requirements have definitely been reduced - the only question is, for how long? Right now, instead of 2 pain patches every 2 days, he has ONE pain patch every 2 days, and instead of 60mg of slow release morphine tablets every 8 hours, he is on 60mg every 12 hours. He still has to take all the other pain meds, but none of them had been of too much concern in the first place - only the high dose of morphine had been a concern.
We checked out on Monday afternoon. Had to wait for the pharmacy to bring up all the meds to take home for Husband, and then go down to pay the bill - suffice to say that of the 7 days in hospital, the most expensive component was the room - at a paltry RM80 per night! The daily charges, including the presence of two senior doctors, the specialist, the nurses, and all the meds, came to a paltry RM10 per day! And the cost of the single xray, and blood tests, totalled the grand sum of RM170. For a final total of RM800!!! I actually got money BACK from the deposit. I could not believe it!
We got an ambulance to bring us home on Monday afternoon. The driver took one look at Husbands fragility and must have taken it on himself to make sure he got us back home as fast as possible, so Husband could get into bed. He had the siren on the WHOLE WAY - and (it was truly amazing to see), ALL MALAYSIAN DRIVERS IMMEDIATELY RESPONDED TO THE SIREN AND JUST GOT OUT OF THE WAY ASAP. Even at traffic lights, and in traffic jammed areas (quite a number), they literally just peeled away to the sides of the roads and lanes of traffic, and left a clear path right down the centre for the ambulance to go through. It was AMAZING to watch - because I have seen ambulances in Singapore trying desperately to get through, and nobody gives way!! Here, in Malaysia, where we always complain about how inconsiderate drivers are, they ALL, without a single exception, gave way! And I had a ring side view as I was in the front passenger seat, directing the driver back to our home! Phew.. must admit it was kind of a scary experience though.
Anyway, we are home now. Husband is slowly starting to eat again - though he only wants his oats porridge (cooked in water, sweetened with honey and topped up with 100ml full cream milk). He is still very tired, very weak, very dazed - though he does know me, and he can nod or shake his head in response to my questions. He can still stand, can still walk - though slowly. The hospice people are coming in tomorrow, to evaluate his status, and discuss with me what kind of help, if any, I may need. My parents are, of course, just waiting to give me any support that I need, with both of them prepared to come and stay with us. BUT, given that they are not exactly spring chickens themselves, I still have to consider other options. They are, however, coming over on Thursday morning, to stay with Husband while I go out for the groceries and also for some "me" time as well.
My parents and my sister and her family are coming over for dinner this Wednesday - as it is my Mum's birthday and since I can't really go out anywhere, and Husband definitely can't go anywhere, we are celebrating it here at Husband's and my place, so that we are all together.
That's it folks. It has been a really difficult week for Husband in all ways, and it has been a difficult week for me emotionally. I think I have cried more this last week than I have in the last 1 year. And I don't think I have finished with my tears either. Every tear that I cry, it has still been worthwhile the time I have had, and continue to have, with this amazing Husband of mine - he truly is, in every way, one in a million, and I have been so blessed to have him in my life.
Please continue to keep Husband in your thoughts and prayers - for strength, for peace of mind, for freedom from hallucinations.
Till next time, stay safe, stay HEALTHY!
Last week, Tuesday morning, called for an ambulance to take Husband to Selayang hospital, as he was just too exhausted and weak to stay on his feet long enough to get down to the car park and into our car. SO... I packed a bag with all the stuff he and I would need for the 7 day stay at the hospital, and my Dad and Mum came and took the bag to the hospital for me, while I went in the ambulance with Husband.
Our wonderful pain management doctor had organised everything - first class single room arranged, admission form already at the ward. All I had to do was get Husband settled in, and then take the admission form and go down to the registration desk and register him. He was registered as a local resident, so the deposit I had to pay was fairly minimal.
Bearing in mind that Selayang is a gov't hospital, I must say that the facilities, and the staff, are as excellent as the private hospitals. The only thing missing from our VERY large first class single room was a fridge - and I had anticipated that problem and brought along the miniature fridge that usually sits on Husband's bed side table - otherwise it would have been an even bigger problem getting Husband to drink as he will not drink warm water! Even the shower facilities here were better than in the private hospital - for one thing the water pressure was excellent and, for another, they actually have shower curtains so I didn't have to worry about inundating the whole bathroom when I showered each day! As for my 'bed', as always, it was one of those pool recliners - metal frame with plastic strips woven across it. The hospital provided me with a pillow and a blanket - I lined the recliner with the blanket and used my own fleece as cover. I guess I am used to what facilities are like in hospitals to come prepared with blankets, fleeces, towels, toiletries, etc, in addition to clothes and books, of course.
They started Husband on the ketamine burst treatment the very same afternoon. Basically a syringe, filled with a mix of 100ml of Ketamine, plus 5ml of Haloperidol (to counteract hallucinations, and aid him in sleeping), plus whatever buffering solution, connected to a battery operated pump (the whole contraption not much longer than from my finger tips to the base of my palm), with a tube running from the syringe to the IV port that was connected to Husband's chemo-port (THANK GOD for the chemo-port. I could not imagine them having to hunt for a vein in his poor arms!!). It took them a couple of minutes to make sure the chemo-port was still clear - first by injecting heparin solution in, and then by pulling back to make sure blood comes back through the tube. If both work well (in and out), then the port is clear and can be used. A single syringe of the ketamine concoction was dispensed in this method over a 24-hour period. Each day, as one syringe emptied, it was removed and another syringe, with a fresh batch of the ketamine concoction, put in its place. This continued through till Saturday afternoon, when the decision was made NOT to continue with the final syringe as Husband was showing a hyper-sensitivity to the drug and was already responding.
The whole point of this was to "reset" his pain centre, and to sensitise his body to morphine so that a lower dose of morphine would be as effective as a higher dose of morphine was previously (pre-ketamine).
So, that was the procedure, in a nutshell.... so why was it a tough week? Because the drugs hit Husband very hard - he was dazed, doped, totally "out-of-it". He lost his appetite completely - and in the one week he was there, he absolutely refused to eat anything. I was only able to coax him to eat a few mouthfuls of rice broth (porridge) each evening, nothing more. He drank a little bit too - but even that was difficult. He DID manage to sleep the first 3 nights, but I could not sleep as I was just too worried that he would wake and be confused in this new environment - so every creak of his hospital bed and I would be out of my recliner to check on him. Not conducive to sleep :-(.
Even though the treatment completed on Saturday, they wanted to keep Husband in until Monday to keep him under observation. The treatment does seem to have worked, as his morphine requirements have definitely been reduced - the only question is, for how long? Right now, instead of 2 pain patches every 2 days, he has ONE pain patch every 2 days, and instead of 60mg of slow release morphine tablets every 8 hours, he is on 60mg every 12 hours. He still has to take all the other pain meds, but none of them had been of too much concern in the first place - only the high dose of morphine had been a concern.
We checked out on Monday afternoon. Had to wait for the pharmacy to bring up all the meds to take home for Husband, and then go down to pay the bill - suffice to say that of the 7 days in hospital, the most expensive component was the room - at a paltry RM80 per night! The daily charges, including the presence of two senior doctors, the specialist, the nurses, and all the meds, came to a paltry RM10 per day! And the cost of the single xray, and blood tests, totalled the grand sum of RM170. For a final total of RM800!!! I actually got money BACK from the deposit. I could not believe it!
We got an ambulance to bring us home on Monday afternoon. The driver took one look at Husbands fragility and must have taken it on himself to make sure he got us back home as fast as possible, so Husband could get into bed. He had the siren on the WHOLE WAY - and (it was truly amazing to see), ALL MALAYSIAN DRIVERS IMMEDIATELY RESPONDED TO THE SIREN AND JUST GOT OUT OF THE WAY ASAP. Even at traffic lights, and in traffic jammed areas (quite a number), they literally just peeled away to the sides of the roads and lanes of traffic, and left a clear path right down the centre for the ambulance to go through. It was AMAZING to watch - because I have seen ambulances in Singapore trying desperately to get through, and nobody gives way!! Here, in Malaysia, where we always complain about how inconsiderate drivers are, they ALL, without a single exception, gave way! And I had a ring side view as I was in the front passenger seat, directing the driver back to our home! Phew.. must admit it was kind of a scary experience though.
Anyway, we are home now. Husband is slowly starting to eat again - though he only wants his oats porridge (cooked in water, sweetened with honey and topped up with 100ml full cream milk). He is still very tired, very weak, very dazed - though he does know me, and he can nod or shake his head in response to my questions. He can still stand, can still walk - though slowly. The hospice people are coming in tomorrow, to evaluate his status, and discuss with me what kind of help, if any, I may need. My parents are, of course, just waiting to give me any support that I need, with both of them prepared to come and stay with us. BUT, given that they are not exactly spring chickens themselves, I still have to consider other options. They are, however, coming over on Thursday morning, to stay with Husband while I go out for the groceries and also for some "me" time as well.
My parents and my sister and her family are coming over for dinner this Wednesday - as it is my Mum's birthday and since I can't really go out anywhere, and Husband definitely can't go anywhere, we are celebrating it here at Husband's and my place, so that we are all together.
That's it folks. It has been a really difficult week for Husband in all ways, and it has been a difficult week for me emotionally. I think I have cried more this last week than I have in the last 1 year. And I don't think I have finished with my tears either. Every tear that I cry, it has still been worthwhile the time I have had, and continue to have, with this amazing Husband of mine - he truly is, in every way, one in a million, and I have been so blessed to have him in my life.
Please continue to keep Husband in your thoughts and prayers - for strength, for peace of mind, for freedom from hallucinations.
Till next time, stay safe, stay HEALTHY!
Monday, February 01, 2010
Back to hospital... again!
Both doctors - the pain management specialist, as well as the hospice doctor - have been rather concerned at the rapid increase in pain levels experienced by Husband and, of course, the concurrent need for increase of pain medication. Mind you, I think they are also a little surprised at how mobile and 'compos mentis' Husband is, especially considering the high dosages of morphine and fentanyl he is on!
Anyway, our wonderful pain management doctor recommended two alternatives, and the hospice doctor (another wonderful doctor with a great deal of empathy!) came down to see us today, to discuss these two alternatives.
Alternative 1: Ketamine infusion. Done via IV, over a 5-day period
Alternative 2: Epidural (into spine) to cater for continuous 24-hour morphine infusion.
So, what does this mean?
Alternative 1: Ketamine is a drug that has been around for a long time. Is used sometimes as an anaesthetic, and also used in treatment of heroin addiction. It has been found that ketamine actually 'resets' the pain centre in the brain with the result that pain is drastically reduced, in some cases for life, and in some cases for several months at a stretch. This should mean that Husband may actually be pain free for at least a short while and any pain subsequent to the ketamine infusion can be managed by far lower dosages of the medicines he is currently taking. The down-side is that he has to be in hospital for 5 days while the ketamine is infused and during the infusion period he is very likely to have hallucinations - which, obviously, can be managed much better in a hospital where there are medical personnel on call, rather than at home by myself :-p.
Alternative 2: This would mean an epidural/catheter inserted into the spine, connected via a subcutaneous tube to a battery powered pack of morphine. With this method, the dosage of morphine is drastically reduced (100 times less!!) and the morphine goes straight to the brain where (of course) pain is 'recognised', thereby reducing the pain. Morphine administered orally or subcutaneously has to be much higher dosages as it goes all over the body, not just the brain, and that is why side effects occur. With the drastically reduced dosages via the epidural, the side effects are also drastically reduced. The down-side here is the need to have a small operation to have the catheter inserted into the spine, the fact that having anything inserted into the spine carries its own risks, and, of course, the need to have the battery operated pack attached all the time!
After discussion with the doctor, we decided to go for Alternative 1, and to save Alternative 2 for a point of time where the pain is so bad that it cannot be controlled by any other means.
Anyway, end result - Husband goes into Selayang (govt) hospital tomorrow, the Palliative Care Unit. Dr Mary (our pain management doctor) has asked us to be in before 1pm, so that she and Dr Richard (who manages the Palliative Care Unit) can come and see us after 1pm and get the treatment started asap. So, my Dad will be at our home by 11am, to come with us to the hospital, so that he can get a wheelchair for Husband, and wait with him while I go find somewhere to park my car!!!! Once we have Husband settled in, and the doctors have gotten him started on his treatment, I will bring my Dad back so that he can get his car and head home, and I will pick up whatever Husband and I need for the 5 days in hospital, and head back to the hospital.
Yes, I am staying with him in the hospital.... Dr Mary says they will provide me with a recliner... sigh... I will miss my bed, but I sure ain't leaving Husband alone in the hospital!
For those of you who are on Skype or MSN with me every day (or every other day!) please note that there is not much chance of my being online for the next 5 days. This being a govt hospital, the chances of there being wi-fi or wired internet available are very very slim (more like non-existent). Of course, if I find that there IS wi-fi, then I will be online. If not, sorry folks, you are just going to have to wait till we are home again to get any further updates... or, of course, you can sms or call me.
So, please please, keep Husband in your thoughts and prayers, that this Ketamine infusion WILL work and at least help to reduce, if not eliminate, the pain for long enough for Husband to have some "quality" in his day to day life. And by "quality" we are only referring to simple things - like being able to sit up to read, or watch a movie; or being able to go out for a meal; or just to go for walks in our favourite shopping malls! Nothing major - just the simple pleasures of life.
And, till next time, stay safe, stay HEALTHY!
Anyway, our wonderful pain management doctor recommended two alternatives, and the hospice doctor (another wonderful doctor with a great deal of empathy!) came down to see us today, to discuss these two alternatives.
Alternative 1: Ketamine infusion. Done via IV, over a 5-day period
Alternative 2: Epidural (into spine) to cater for continuous 24-hour morphine infusion.
So, what does this mean?
Alternative 1: Ketamine is a drug that has been around for a long time. Is used sometimes as an anaesthetic, and also used in treatment of heroin addiction. It has been found that ketamine actually 'resets' the pain centre in the brain with the result that pain is drastically reduced, in some cases for life, and in some cases for several months at a stretch. This should mean that Husband may actually be pain free for at least a short while and any pain subsequent to the ketamine infusion can be managed by far lower dosages of the medicines he is currently taking. The down-side is that he has to be in hospital for 5 days while the ketamine is infused and during the infusion period he is very likely to have hallucinations - which, obviously, can be managed much better in a hospital where there are medical personnel on call, rather than at home by myself :-p.
Alternative 2: This would mean an epidural/catheter inserted into the spine, connected via a subcutaneous tube to a battery powered pack of morphine. With this method, the dosage of morphine is drastically reduced (100 times less!!) and the morphine goes straight to the brain where (of course) pain is 'recognised', thereby reducing the pain. Morphine administered orally or subcutaneously has to be much higher dosages as it goes all over the body, not just the brain, and that is why side effects occur. With the drastically reduced dosages via the epidural, the side effects are also drastically reduced. The down-side here is the need to have a small operation to have the catheter inserted into the spine, the fact that having anything inserted into the spine carries its own risks, and, of course, the need to have the battery operated pack attached all the time!
After discussion with the doctor, we decided to go for Alternative 1, and to save Alternative 2 for a point of time where the pain is so bad that it cannot be controlled by any other means.
Anyway, end result - Husband goes into Selayang (govt) hospital tomorrow, the Palliative Care Unit. Dr Mary (our pain management doctor) has asked us to be in before 1pm, so that she and Dr Richard (who manages the Palliative Care Unit) can come and see us after 1pm and get the treatment started asap. So, my Dad will be at our home by 11am, to come with us to the hospital, so that he can get a wheelchair for Husband, and wait with him while I go find somewhere to park my car!!!! Once we have Husband settled in, and the doctors have gotten him started on his treatment, I will bring my Dad back so that he can get his car and head home, and I will pick up whatever Husband and I need for the 5 days in hospital, and head back to the hospital.
Yes, I am staying with him in the hospital.... Dr Mary says they will provide me with a recliner... sigh... I will miss my bed, but I sure ain't leaving Husband alone in the hospital!
For those of you who are on Skype or MSN with me every day (or every other day!) please note that there is not much chance of my being online for the next 5 days. This being a govt hospital, the chances of there being wi-fi or wired internet available are very very slim (more like non-existent). Of course, if I find that there IS wi-fi, then I will be online. If not, sorry folks, you are just going to have to wait till we are home again to get any further updates... or, of course, you can sms or call me.
So, please please, keep Husband in your thoughts and prayers, that this Ketamine infusion WILL work and at least help to reduce, if not eliminate, the pain for long enough for Husband to have some "quality" in his day to day life. And by "quality" we are only referring to simple things - like being able to sit up to read, or watch a movie; or being able to go out for a meal; or just to go for walks in our favourite shopping malls! Nothing major - just the simple pleasures of life.
And, till next time, stay safe, stay HEALTHY!
Sunday, January 31, 2010
So tired, so very very tired...
And I'm not even sure if that heading refers to Husband or me!
Husband is exhausted. His marathon walking sessions and total lack of sleep have caught up with him. The insufficiency of food intake is telling now. He is even thinner now than he was last week - really truly just skin and bones. And, to make it worse, last night he was actually puking up the juice that he drank just before dinner.. and after all the puking he just could not eat dinner. Several times yesterday and today, he was so tired that he needed my help just to get out of bed - and that included throughout the night as well. Sleep wasn't really on the cards last night - but we both did manage to get some sleep this afternoon.
Last night we also increased the pain patches to THREE, and since the 3rd patch was being applied for the first time, it took 12 hours (ie, until 9am this morning) for it to take affect. Unfortunately, at 6am, Husband was in pain again, and had to take liquid morphine... which meant that by the time the pain patch kicked in, he was completely dopey and knocked out! My heart ached just from looking at him like that. Ended up holding his hand for a couple of hours and just crying my eyes out. Luckily he was too dopey to realise that I was crying!
Food-wise, today at least, has been reasonably good. He had his usual oats porridge for breakfast at 8am, followed by a soft-boiled egg at 10.30am, followed by rice porridge at 1.30pm (though he had to eat it in 2 installments, the 2nd installment being 2pm), another round of oats porridge at 7pm, and another round of rice porridge at 9pm. Still not a HUGE quantity, but he DID manage to keep everything down with no gagging and no puking either.
Either tomorrow or Tuesday we will be seeing the hospice doctor again - to discuss what other options we have for pain control, as the pain management specialist feels that the pain is going up too fast, and the dosage of meds is going up as well to try and control it, and the side effects will, obviously, get worse (primarily the puking and the hallucinations). So she has suggested two alternatives, and wants the hospice doctor to discuss them with us asap so that we can make a decision soon. Both alternatives will have the plus point of reducing the number of pills that Husband has to take, and, also reduce the side effects! Let's see how it goes.
My parents dropped the maid off this morning, on their way to church, and with her came a huge platter of yummy chicken beriyani rice, made by my sister the night before and sent for me to try out. It was her first attempt, and I have to say it was totally scrumptious. AND she sent more than enough for both the maid and me to have for lunch. My Mum had also made a steamed South Indian dessert, sort of like the Chinese Pau, but with brown sugar and coconut as the filling. Also very yummy - one of my favourite desserts :-). As you can see, today was quite a "foodie" day for me!
I also spent some time today re-organising the kitchen - shifting things around to maximise work space and to cater for 2 dish drainers as one dish drainer is never enough!
That's it for now folks. Please do continue to keep Husband in your thoughts and prayers that we can bring his pain under control and that, if nothing else, he can have some QUALITY of life - a factor that has been sorely missing in his life for almost a year now. Husband just considers that phrase "QUALITY OF LIFE" an absolute joke, and a joke in bad taste at that!
Till next time, stay safe, stay HEALTHY!
Husband is exhausted. His marathon walking sessions and total lack of sleep have caught up with him. The insufficiency of food intake is telling now. He is even thinner now than he was last week - really truly just skin and bones. And, to make it worse, last night he was actually puking up the juice that he drank just before dinner.. and after all the puking he just could not eat dinner. Several times yesterday and today, he was so tired that he needed my help just to get out of bed - and that included throughout the night as well. Sleep wasn't really on the cards last night - but we both did manage to get some sleep this afternoon.
Last night we also increased the pain patches to THREE, and since the 3rd patch was being applied for the first time, it took 12 hours (ie, until 9am this morning) for it to take affect. Unfortunately, at 6am, Husband was in pain again, and had to take liquid morphine... which meant that by the time the pain patch kicked in, he was completely dopey and knocked out! My heart ached just from looking at him like that. Ended up holding his hand for a couple of hours and just crying my eyes out. Luckily he was too dopey to realise that I was crying!
Food-wise, today at least, has been reasonably good. He had his usual oats porridge for breakfast at 8am, followed by a soft-boiled egg at 10.30am, followed by rice porridge at 1.30pm (though he had to eat it in 2 installments, the 2nd installment being 2pm), another round of oats porridge at 7pm, and another round of rice porridge at 9pm. Still not a HUGE quantity, but he DID manage to keep everything down with no gagging and no puking either.
Either tomorrow or Tuesday we will be seeing the hospice doctor again - to discuss what other options we have for pain control, as the pain management specialist feels that the pain is going up too fast, and the dosage of meds is going up as well to try and control it, and the side effects will, obviously, get worse (primarily the puking and the hallucinations). So she has suggested two alternatives, and wants the hospice doctor to discuss them with us asap so that we can make a decision soon. Both alternatives will have the plus point of reducing the number of pills that Husband has to take, and, also reduce the side effects! Let's see how it goes.
My parents dropped the maid off this morning, on their way to church, and with her came a huge platter of yummy chicken beriyani rice, made by my sister the night before and sent for me to try out. It was her first attempt, and I have to say it was totally scrumptious. AND she sent more than enough for both the maid and me to have for lunch. My Mum had also made a steamed South Indian dessert, sort of like the Chinese Pau, but with brown sugar and coconut as the filling. Also very yummy - one of my favourite desserts :-). As you can see, today was quite a "foodie" day for me!
I also spent some time today re-organising the kitchen - shifting things around to maximise work space and to cater for 2 dish drainers as one dish drainer is never enough!
That's it for now folks. Please do continue to keep Husband in your thoughts and prayers that we can bring his pain under control and that, if nothing else, he can have some QUALITY of life - a factor that has been sorely missing in his life for almost a year now. Husband just considers that phrase "QUALITY OF LIFE" an absolute joke, and a joke in bad taste at that!
Till next time, stay safe, stay HEALTHY!
Friday, January 29, 2010
My tired babe, and visitors from SG.
Husband is very tired - hardly sleeps as he just cannot stay still for any length of time. His legs are so "restless" that he has to keep moving - even through the night. He will lie down for maybe 30 mins, and then he is up and moving again. Quite often I will check in on him and think he is fast asleep, and 10 minutes later he is wandering around the house! Of course, with all the moving around, which definitely qualifies as EXERCISE, and the fact that he is not eating enough, he is getting skinnier and skinnier. It's not that he is not eating - he tries very hard to eat, but his stomach capacity and appetite just are not there at all! Yesterday morning, for his 10.30am soft boiled egg, he was willing to try a slice of toast. He took ONE BITE of the toast, with yummy mushy eggs on it... and he just could not get himself to swallow it - he ended up spitting the toast out, so I ended up making him a fresh boiled egg to eat, WITHOUT any toast. So, it is not for want of TRYING that he is not eating much.
For lunch today I made him a fairly large portion of chicken rice porridge, and though it took 2 installments 2 hours apart, he DID manage to finish most of it :-). The good news of course is that he is no longer puking his food up. Not to say he does not get nauseous, but even though he gags, he is not actually vomiting anything. And, even better is the fact that he is not allowing this to ruin his overall mood and even though I cannot say he is CHEERFUL as such, at least he is still upbeat and not down!
The pain in his shoulders and upper back is slowly building up - and it is all I can do to keep up with it. For the last few days, over and above the pain patches and the slow release oxycontin tablets (no more slow release morphine! Even the supplier has run out, so the hospitals don't have any), he has had to take an extra 40ml (ie, 80mg) of liquid morphine. The hospice doctor has recommended that if he goes up to 60ml (120mg) in one day, then I should increase the pain patches to THREE. Have to see how he goes this weekend!
We had visitors from SG today :-). Grace and Mo, 2 very dear friends of ours, flew up this morning, arriving at our house by 11.15am. I had stocked up on loads of food at the pasar malam last night, and had invited my sister over for lunch as well. When Grace and Mo arrived, after seeing Husband, and sitting and chatting for a while, took them to Mont'Kiara Plaza to get roti canai, etc, and have coffee/tea. My sister met us there, then we all headed back to Hijauan to have our lunch. LOT of talking, and catching up to do. It was great to have them over, and we hope they come again soon - still got lots to catch up on! My parents came over, after lunch, to see them as well. The airport taxi came to pick them up at 4.30pm to take them back to the airport for their return flight. Hopefully their next visit will be longer as they are such great company!
The sad sad news this week is that a friends husband just died yesterday. My heart broke on hearing that news - she (Sally) is just the same age as me, and her husband just a few years older, and they have kids. It is just so heart breaking to lose someone dear to you, and I can so empathise with her. I called her this morning and even though we did not talk for long, we both ended up in tears and she is such a generous hearted person that in the midst of her sorrow she can tell me that she always prays for Husband and me. I cried even more at that :-(. I hope that I can be as strong and as generous hearted as her one day!
That's all the news for now. Please do continue to keep Husband in your thoughts and prayers. I know that it may be too much to hope for a miracle to take away the cancer, but we can still pray that he gains in strength so that he can have improved quality of life, and less pain, and can try and enjoy whatever time he still has with me.
Till next time, stay safe, stay HEALTHY!
For lunch today I made him a fairly large portion of chicken rice porridge, and though it took 2 installments 2 hours apart, he DID manage to finish most of it :-). The good news of course is that he is no longer puking his food up. Not to say he does not get nauseous, but even though he gags, he is not actually vomiting anything. And, even better is the fact that he is not allowing this to ruin his overall mood and even though I cannot say he is CHEERFUL as such, at least he is still upbeat and not down!
The pain in his shoulders and upper back is slowly building up - and it is all I can do to keep up with it. For the last few days, over and above the pain patches and the slow release oxycontin tablets (no more slow release morphine! Even the supplier has run out, so the hospitals don't have any), he has had to take an extra 40ml (ie, 80mg) of liquid morphine. The hospice doctor has recommended that if he goes up to 60ml (120mg) in one day, then I should increase the pain patches to THREE. Have to see how he goes this weekend!
We had visitors from SG today :-). Grace and Mo, 2 very dear friends of ours, flew up this morning, arriving at our house by 11.15am. I had stocked up on loads of food at the pasar malam last night, and had invited my sister over for lunch as well. When Grace and Mo arrived, after seeing Husband, and sitting and chatting for a while, took them to Mont'Kiara Plaza to get roti canai, etc, and have coffee/tea. My sister met us there, then we all headed back to Hijauan to have our lunch. LOT of talking, and catching up to do. It was great to have them over, and we hope they come again soon - still got lots to catch up on! My parents came over, after lunch, to see them as well. The airport taxi came to pick them up at 4.30pm to take them back to the airport for their return flight. Hopefully their next visit will be longer as they are such great company!
The sad sad news this week is that a friends husband just died yesterday. My heart broke on hearing that news - she (Sally) is just the same age as me, and her husband just a few years older, and they have kids. It is just so heart breaking to lose someone dear to you, and I can so empathise with her. I called her this morning and even though we did not talk for long, we both ended up in tears and she is such a generous hearted person that in the midst of her sorrow she can tell me that she always prays for Husband and me. I cried even more at that :-(. I hope that I can be as strong and as generous hearted as her one day!
That's all the news for now. Please do continue to keep Husband in your thoughts and prayers. I know that it may be too much to hope for a miracle to take away the cancer, but we can still pray that he gains in strength so that he can have improved quality of life, and less pain, and can try and enjoy whatever time he still has with me.
Till next time, stay safe, stay HEALTHY!
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