This will be the first time since January 1998 that Ken, my beloved Husband, has not been in my life. And it is just over 3 days since he said "I love you" for the last time to me, and slipped away from me. I told him many, many times that in his next life he must find me earlier, so that we have more time to spend together - but before that can happen I have to join him in the afterlife first!!! And since I come from a family whose average age tends into the 80's, and I am just short of reaching the half-century mark, it is going to be a while before that can happen. Till then, I will just have to get on with life!
The funeral held for Ken on Thursday was very simple. It is the only service in our church that does NOT need to be conducted by a priest. Ken had been brought to our PJ house at around 9.30am on Thursday 11th Feb, beautifully dressed in his suit, and honestly looking like he was just sleeping. It was an "open" casket in the sense that the caskets wooden lid had been removed, but there was a glass pane, like a second, transparent cover, in place as well.
An amazing number of people turned up - many of them had also attended our wedding reception in May 1999, and I guess that brings it full circle for them, as far as Ken and I as a pair are concerned. I can just imagine Ken watching in amazement from "above" at all the people! People started arriving from around 9.30am onwards, some to stay till the service at 1pm, others to just simply pay their last respects to Ken, and then to head back to their various offices, tasks, etc. Ken's old and good friends from his Nortrans days in Singapore also turned up - Oskar, Kevin, Yves, Rya - all flew in from SG that morning, returning in the evening. Tony and Hwee Peng drove up from SG which was amazing, as Peng had just flown in from Shanghai, went straight to Tony's place, dumped her bags, and they both drove straight out to KL. Got 'slightly' lost, as they had never been to PJ before, but arrived in perfect time for the funeral service. Too many people turned up for me to name them all, but I have to mention (in no particular order) special friends (other than those already mentioned above) who have know both Ken and I for years, who are not from within my church: Jodi, Koshu, Bala, Gopal, Fay, Rini, Huy Ping, Mercy J, Mervyn, Anne S, Karen, Philip, Ruku, Sabariah, Khean Fatt (his wife, TT, had come to the house the night before), Shida, Shawn, Molly, Efy, Sianny, Adrian, Keen, Michael (who flew in from Penang specially!!), and so many others that I just cannot name them all.
Several lovely Christian songs were sung, then at 1pm, a short prayer was said by a friend of mine (also called Sheila), followed by the tribute/eulogy from my sister. My Dad then conducted a short funeral service, adapted from the much longer funeral service normally conducted, and this was then followed by another prayer by my cousin (Prasad). All this only took about 20 minutes. After that, Ken was taken into the hearse, and we all drove to the crematorium. Got there just before 2pm, and my cousin Malini (who was forever linked by Ken to the most amazing breakfast we had ever had in SG - at her brothers home in SG, organised and managed by her, several years ago), said the final prayers for Ken. The undertakers, at our request, lifted the glass lid off the casket, so that we could place flowers on Ken, and also so that I could give him a final goodbye kiss, after which they put back first the glass lid, and then the wooden one, and then took Ken into the incinerator room. I went into the incinerator room too, with my entire family (only missing my brothers 3 kids), to say my final goodbyes. It was such a heartache and I was crying so hard - my sister and I had our arms around each other, heads together, just weeping our eyes out. It was so so hard to say that final goodbye.
From there, everyone went their separate ways. My family headed back to their various homes - my parents, and my sis/hubby and 2 boys back to PJ; my bro/wife back to Melaka. Jodi had come with me, so we headed back to Mont'Kiara, with Tony/Peng following us there. We 4 had lunch there, then Jodi headed home, and Tony/Peng headed back to Singapore..... and I went back to my now empty, quiet home. No more Ken there :-(.
I hadn't had any sleep at all on Wednesday night - every time I tried to lie down and just go to sleep I would start crying, so I had just kept myself busy all night, so as NOT to cry. Thursday night though, I was able to get to sleep - I think the last few weeks of not getting enough sleep finally caught up with me. I spent some of Thursday trying to sort through Ken's clothes, sorting out what to give to my parents, brother, brother-in-law, charity, etc.
Friday afternoon I headed over to my parents place in PJ, in time for lunch. At 3pm the undertakers came by, to drop off the lovely onyx urn I had selected, now with Ken's ashes in them, as well as the t-shirt that the hospice nurse and I had dressed him in before they took him. I wanted that t-shirt back - it was the last thing he wore, and it was a "Ken" t-shirt, as it had a musical note on the breast pocket!! Also spent some time sorting out Ken's clothes that were at PJ. Later that afternoon another friend, Sally (whose husband has passed away just a few weeks earlier), dropped by for a few hours, and then another cousin (Philipose) dropped by in the evening and joined us for dinner. I stayed the night at PJ - and, like on Wednesday, found that when I tried to sleep, I just ended up crying instead. So I read for several hours, until I was really sleepy, then cried for an hour or so, and finally fell asleep probably around 5am. Was up by 7.30am though :-(... so, not enough sleep again!
Spent this morning out and about with my sister, her two boys, and my parents - first for breakfast, then went to get shoes for my Dad, then for lunch, then back to PJ again. From there, back home - so I am now in Hijauan, updating this blog, sorting out loads of medical supplies that I still have to give to the hospice, sorting out more of Ken's clothes, and, at 6.30pm, heading out to meet Efy and Sianny for dinner.
Still a lot of things to do - get his will probated, get his death certificate (my Dad will do that for me on Wednesday, after Chinese New Year is over), inform the British High Comm of his death, inform Malaysian immigration (so that his visa can be cancelled), inform his pension company, get our Malaysian bank accounts changed from joint to single accounts, go to Singapore to report his death to immigration there so they can cancel his PR, get the SG bank accounts changed from joint to single, and go the UK (middle of the year) to visit his family, and his best friend Kevin. In between, there will be several friends coming to stay, all to catch up on stories and to reminisce about Ken, end of Feb, mid-March, etc.
Once things are sorted, then I might even go back to work - after my trip to the UK.
For now, I will take things one step at a time, one day at a time, and let time work its (hopefully) healing magic on me, so that I can keep Ken in my heart forever, without the constant heartache that is my companion.
Till next time....
Saturday, February 13, 2010
Thursday, February 11, 2010
A tribute to my beautiful Husband, from my wonderful little Sister
"Right now we are all mourning Ken's passing, and it would be very easy to talk about grief and sorrow. But, instead, I want to take a leaf out of my sister's book, if I can manage to be half as strong and collected as she has been. Yesterday Ken passed away. It was also my mother's birthday. When I called my sister, she said we should all gather at her home, to celebrate mum's birthday and also to celebrate Ken's life. Well, as part of that celebration of his life - a life lived to the fullest - I want to take this opportunity to thank Ken for a lot of things.
I want to thank him first for being brave enough to take us all on. He got to know Sheila as an individual, a seemingly unattached, singular entity, when they were in Singapore. And then, one weekend, we all gathered in Malacca, and met him. And this man, despite being faced by a large, unruly, noisy, extended Malayali family, remained steadfast. We must have been a shock to his reserved English system, but he bore up extremely well - for more than 11 years.
I want to thank him for his unfailing generosity - whether it was putting us up (and putting up with us) whenever we were in Singapore (I was a frequent visitor during my 3 years as a student); or complaining his way through my jargon-filled thesis, but still sticking with the proof-reading (and, Yes, Ken, every word I used really does exist); or cooking one of his delicious meals. And knowing how much my sister "loves" to cook, she was really lucky to find someone who not only COULD cook, but also LIKED to cook. I know that my son, Lucas, first encountered roast beef when Ken cooked it for us, and for a few years after that occasion, he would still talk with fond nostalgia about "Uncle Ken's roast beef". And, for both my sons (Lucas and Stephen), all apple crumbles were always compared, unfavourably, to Uncle Ken's apple crumble. Christmas was a time to savour his alcohol-laden, royal-icing covered masterpiece of a fruit cake. Ken enjoyed cooking - and we certainly enjoyed the fruits of his labour.
I thank him for his spirit and his zest for life. He and Sheila enjoyed their time together at least partly because Ken was willing and eager to go away and do stuff. If there was a beach, or a dive site, or a sailboat nearby, Ken would be happy, and he and Sheila had some wonderful holidays together - good memories for her to carry with her. But it was more than just going on holidays - he was a man who enjoyed good things - good food, good company, good music, a good book. He found pleasure in life, and that is something we should celebrate.
Most of all, I want to thank him for being the right man for my sister. It took them a while to find each other, but he was worth the wait. Everyone who knows Sheila knows that she is strong-willed and opinionated; younger sisters might describe her as bossy! Ken took that strong personality on board, and was strong enough himself, to let her be who she is. I have never seen her as happy as when they were together. Perhaps their time together has been too short. But I am thankful that they had that time, and that they enjoyed it to the hilt.
Thank you Ken, for being part of our family. We'll miss your quiet presence and your wry sense of humour.
Goodbye."
I want to thank him first for being brave enough to take us all on. He got to know Sheila as an individual, a seemingly unattached, singular entity, when they were in Singapore. And then, one weekend, we all gathered in Malacca, and met him. And this man, despite being faced by a large, unruly, noisy, extended Malayali family, remained steadfast. We must have been a shock to his reserved English system, but he bore up extremely well - for more than 11 years.
I want to thank him for his unfailing generosity - whether it was putting us up (and putting up with us) whenever we were in Singapore (I was a frequent visitor during my 3 years as a student); or complaining his way through my jargon-filled thesis, but still sticking with the proof-reading (and, Yes, Ken, every word I used really does exist); or cooking one of his delicious meals. And knowing how much my sister "loves" to cook, she was really lucky to find someone who not only COULD cook, but also LIKED to cook. I know that my son, Lucas, first encountered roast beef when Ken cooked it for us, and for a few years after that occasion, he would still talk with fond nostalgia about "Uncle Ken's roast beef". And, for both my sons (Lucas and Stephen), all apple crumbles were always compared, unfavourably, to Uncle Ken's apple crumble. Christmas was a time to savour his alcohol-laden, royal-icing covered masterpiece of a fruit cake. Ken enjoyed cooking - and we certainly enjoyed the fruits of his labour.
I thank him for his spirit and his zest for life. He and Sheila enjoyed their time together at least partly because Ken was willing and eager to go away and do stuff. If there was a beach, or a dive site, or a sailboat nearby, Ken would be happy, and he and Sheila had some wonderful holidays together - good memories for her to carry with her. But it was more than just going on holidays - he was a man who enjoyed good things - good food, good company, good music, a good book. He found pleasure in life, and that is something we should celebrate.
Most of all, I want to thank him for being the right man for my sister. It took them a while to find each other, but he was worth the wait. Everyone who knows Sheila knows that she is strong-willed and opinionated; younger sisters might describe her as bossy! Ken took that strong personality on board, and was strong enough himself, to let her be who she is. I have never seen her as happy as when they were together. Perhaps their time together has been too short. But I am thankful that they had that time, and that they enjoyed it to the hilt.
Thank you Ken, for being part of our family. We'll miss your quiet presence and your wry sense of humour.
Goodbye."
Wednesday, February 10, 2010
Goodbye, my love. I will always love you.
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.
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.
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!
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