Of hallucinations, and Xmas!

Strange combination of subjects, isn't it?

Well, let's start with the hallucinations. Husband still has them. Yes, on a daily basis. No, not on a 24 hour basis. Happens more at night than in the daytime - probably because we sleep with the curtains open (we are high enough up, with nobody overlooking our windows!), so the shadows that get thrown in the room can be pretty scary. The doc did say it would take a few weeks for the hallucinations to completely disappear, but it WOULD disappear, and that is the reassurance I am holding on to for now. I'm not going to beg for trouble before it happens :-(.

As to his meds, I have switched to giving him the meds twice a day. So instead of 2 pills 3-times a day, at 8 hourly intervals, I am (as per doctors suggestion), switching to 3 pills 2-times a day, at 12-hourly intervals. The doctor wants me to see WHEN (IF) the pain breaks through, and, if required, administer the liquid morphine, and track how much of the liquid opiate I am giving him. She will use this information to adjust his dosage later. The reason for this change is that Husband is still too sleepy all the time, so she thinks the drugs are not coming out of his system in 8 hours. The way it should be is that, as we come closer to the next dosage, the pain should be breaking through. If it is not, then the drug is not being flushed out of his system fast enough. So, first step: 3 pills, twice daily at 12 hour intervals (8am, 8pm). If he is still too sleepy, she wants me to reduce it to 2 pills at 8am, 3 pills at 8pm.... so let's see how it goes.

Now, on to Xmas.

Went shopping with my sister yesterday. She brought my Mum and the maid over as well - my Mum to keep an eye on Husband, and make sure he has his lunch, and takes his meds, at the right times. The maid to clean the house. My sis and I left home at 10.30am, and didn't get home till just after 4.00pm! Phew!!! Talk about TIRED! And my BACK - oh boy, it has been a LONG time since my back ached like that. It's all that walking, even if I did wear so-called "walking shoes"!

It was worth it though. Got all my Xmas present shopping done, AND got all the Xmas tree decorations and lights :-D. IN ONE DAY! Wow, now, that is the first time EVER I have been able to that. My sister had also brought over her small (4 ft) Xmas tree for me, as they had bought a bigger one for themselves. So, after we got home from our shopping, and after my sis had left with Mum and maid, I started on the tree - sorting out the decorations, the tinsel, the lights. Setting the tree up, and then decorating it. Found I had bought TOO MANY decorations :-p, but I figure, what the heck, Xmas decorations always get damaged or lost, so I have lots of spares for the next few years :-D. Also got all the Xmas pressies wrapped, and under the tree... and they will be transferred from here to our PJ house on Xmas Eve, for the family get together dinner and gift opening session after dinner on Xmas Eve. Yes, we always do this on Xmas Eve. Always have done, as Xmas Day was usually an "open house" day when friends come over, and we have no time for just the family.

No, we are not having open house this year. I think, with the way Husband is, nobody really has the mood to do that kind of party. We shall save it for next year when he is better. Husband and I will have Hwee Peng staying with us for the weekend :-D, so she is going to be part of the family get-together on Xmas Eve. Tony won't be able to join us, as he is making his usual Xmas trip back to Ireland to spend Xmas with his family.... BUT, if Husband is well enough, strong enough, we may be able to make a trip to SG to spend New Year with Peng and Tony. At this moment, I am not too optimistic about that - but miracles have been known to happen!

Last night we also had the unexpected pleasure of talking to Husband's sister, Avis, and her husband, John, on Skype.. Not just TALKING, but SEEING, as these two self-proclaimed technophobes shocked themselves by successfully setting up skype on their machine WITH a webcam and all. Well done Avis and John :-)... and we look forward to "seeing" you again soon.

SO, that's it for now. Please, as always, continue to keep Husband in your thoughts and prayers, that he can adjust well to the opiates and have NO MORE hallucinations, and that he gets stronger, becomes more positive, and then we can continue the fight against the cancer.

Till next time, stay safe, stay HEALTHY!

He SLEPT last night! Hallelujah :-D

But let's not get ahead of ourselves and start jumping around in glee. Yep, he slept all right! BUT, this morning, he is still twitching and jerking and hallucinating.

Anyway, back to the beginning. Husband slept from 11pm last night, to 6am this morning. I was supposed to give him his usual 4am dose of opiate, but when I saw how soundly he was sleeping I just did not have the heart to wake him up. I figured he needs the sleep desperately, and I can skip the dose till whatever time he wakes up. As it turned out, he woke up at 6am, so I gave him the opiate, in a lower dose (4ml, just for 2 hours), and he went back to sleep again.

HAD to get him up for breakfast before 8am, because otherwise he gets gastric pains and he really does NOT need any more "pains" to add discomfort to his already much abused body! Gave him the (hopefully) FINAL dose of the liquid opiate at 8.10am. Next round of meds is at 10.30am, and that will be 30mg of oxycontin. THEN the slow release capsules take over :-)

He is back to dozing again - still tired out from not sleeping for so many days and nights in a row. Still depressed because he is still having hallucinations and the twitches. BUT he is not as hyperactive as the last 2 days, probably because he just too physically exhausted after the hyperactive-ness of the last two days!!!

My Dad is probably already at the hospital by now, waiting to see the pain management doc, to pick up the slow release pills for Husband. First dose, at 3 or 3.30pm. Then we see how it goes over the next 1 week.

So, please continue to keep Husband in your thoughts and prayers, that the slow release capsules work well for him, and that he can be completely lucid and completely pain free.

Till next time, stay safe, stay HEALTHY!

2 nightmare nights in a row.

Last night was worse than the night before. Husband was like a hyper-active jack-in-the-box, leaping (literally) out of bed every 10 minutes or so, rushing to do various obscure things, see various unseen people, participate in various impossible meetings, parking unseen cars, trying to walk through walls to get to non-existent gyms, talking and arguing with invisible people, body jerking and twitching like a puppet on deranged strings whenever he was lying down. So, as you could guess, I had a rather active night too, trying to get him calmed down and back into bed each time he leapt out.

To add to the worry, he would move so fast that he was stumbling over his own feet, knocking his shins on the corner of the bed, and falling against the wall. I am just eternally grateful that he did not actually fall down!

I had to go to the supermarket today, so my parents came over to sit with Husband and keep an eye on him while I went off. I was only away for just over an hour and, when I came back, my Dad, just before he headed off to work, said to me "Now I know what you mean when you say he is hyper-active." Anyway, he went off to work, while my Mum stayed with me. She cooked lunch for her and me - with more than enough left overs to keep me going for a few days. There is plenty of food for Husband too, as I had done an Irish stew overnight for him, in the slow cooker. My Mum left around 5pm, when my Dad (on the way back from work) came and picked her up.

Anyway, spoke to the pain doc today. She says that this level of hallucination and twitching is NOT normal, and it looks like he is extremely sensitive to the effects of the drug.... more so when it is administered in liquid form and hits the system pretty hard right at initial dosage, and then when the dosage is repeated every 3 hours, it does not give the body time to calm down, and giving a higher dose (so that there are longer intervals between dosages) does not help as the higher dose would just make it worse!

So, she is going to take him off the liquid morphine, and put him on time-release morphine capsules, to be taken 3 times a day, at 8-hourly intervals. The theory being that, since these are time-release capsules, he will not get hit with a huge dose at any time during the 8 hours, from the time he takes the capsule to the time of the next dosage, but will instead have slow and steady release of a lower dosage of the opiate into his system.

Since I do not want to leave Husband alone at home, my Dad is going to go and collect the new meds from the pain doc tomorrow morning, and then drop them off for me, before he heads to work. This means that I can start him on the new meds tomorrow, commencing at 3pm, followed by 11pm, followed by 7am, and that will be the daily cycle. I have to keep him on this for one week, and then report back to the doc. If he handles it well, and there are no side effects, or MINIMAL side effects, then we are likely to stick to that. If not, well, we will cross that bridge when we come to it.

So, folks, that is the latest. Still not easy, and still got to get through tonight, with Husband already all set to be as hyper as he was last night. I am hoping and praying that the time release capsules work well, and minimise or eliminate the side effects.

Till next time, please continue to pray for Husband and, as always, stay safe, stay HEALTHY!

Hallucinations galore...

Since starting on this opiate on Wednesday, Husband has been constantly plagued by hallucinations. And, from what I can see, they are SCARY at times too. I am scared to leave him on his own now! Last night, at 9.30pm, I was in the living room, when Husband came out of the bedroom and headed into the kitchen. I asked him what he was looking for, and he said "chocolate ice cream". Now this really puzzled me, as he does not like chocolate ice cream, so I thought he had made a mistake and told him that if he wants, his favourite vanilla ice cream is in the 2nd fridge. He said No, he needs CHOCOLATE - and when I asked WHY, he said "For HIM, you know, the guy with the big nose." !!!! I asked him WHICH GUY, and reminded him that we are at home, and there is nobody else here with us... and he says I KNOW, HE IS DOWNSTAIRS HAVING A MEETING, AND I PROMISED HIM CHOC ICE CREAM WHEN HE FINISHES.

Oh man! I got him back into the bedroom, told him again that there is nobody except us, there is no meeting taking place downstairs, and we are not expecting anyone... 5 minutes later, I was back in the living room again and I see Husband, now with his shorts on, heading out the front door. I YELLED his name and ran after him, and asked him where he was going - and he says TO BUY ICE CREAM. Oh boy, oh boy... now that scared me. What would have happened if he had walked out and I had not noticed? If I had been in the study, I may not have seen him walk past! That scared me! A LOT!!

And last night was the worst yet. Neither of us slept - Husband was up and down all night, talking, yelling, seeing things that were not there, reacting to people that were not there. I was so worried that he might just walk out the door again, that I could not sleep at all. Getting him back into bed each time he got out of bed was exhausting too. Most of the time he doesn't even realise that he is at home in his own room, in his own bed. Once he asked me, ARE WE IN PERTH?

I am just hoping that these hallucinations will not last for much longer, as I am not sure how much longer I can last without any sleep at all. Luckily, during the day, Husband does manage to get quite a lot of sleep, so that is one blessing, but I find it hard to sleep during the day anyway, and now with these 'disturbances' at night, I can't sleep at night either. Hmmm, how long can one keep going without sleep?

I have to check with my parents if they can come and keep an eye on Husband tomorrow morning, as I have to go to the supermarket, and I don't dare leave Husband alone at home - too scared to do that, in case, by the time I get home, he has gone out looking for ice cream or something else!

Enough said for now. Please continue to keep Husband in your thoughts and prayers, that the hallucinations will end SOON, so that he can get back to living a half-way NORMAL life again.

Till next time, stay safe, stay HEALTHY!

Dopey, and Sleepy

It feels like I have two of the seven dwarfs living here, both encapsulated in Husband's body :-(. Started yesterday late morning with 5ml of morphine. And, Yes, it is effective in controlling the pain, for just over 2 hours at that dosage. But it makes Husband extremely hallucinatory, light headed, twitchy, barely able to keep his eyes open. Last night was a living nightmare - Husband spent all night talking to people who were not there (well, not that I could see anyway), holding imaginary tools, fixing imaginary problems, conducting an imaginary orchestra, arms and legs constantly twitching. And I had to keep calming him down, trying to get him to relax, trying to get him to sleep. Not successful, though :-(.

This morning at 8.30am I started with the same 5ml dosage, but, for the next one, reduced it to 3ml, to see if it could still control the pain for 2 hours, and to see whether the side effects are any less. The answers: Yes, the pain is still under control for 2 hours, and Yes, the side effects are marginally less. Have now done two rounds at 3ml each, and the next round I am going to try for 2ml. I have to try and find the balance between pain control and NO hallucinations, if at all possible.

It is so so heartbreaking to see Husband like this. He is totally out of it, totally not "here" with me. At least before he would remember to sit up and drink from time to time... but now he is so "out of it" that he doesn't even remember to sit up, let alone drink. And getting him to eat and drink is still as difficult as ever!

Well, the doctor said that we have to take at least 1 week to let him get used to the opiate... so I have to continue fine tuning to find the right balance and just pray that I CAN. I cannot bear to see Husband like this - I've been in tears pretty much the whole morning, and it is just so devastating to see my beautiful and wonderful Husband like this.

Please keep on praying that I will find the right dosage for Husband that will work well to suppress the pain, and yet allow him to function perfectly normally. Because if this doesn't work, we may have to go for the final option of inserting a cannula into the spine.

Please continue to keep Husband in your thoughts and prayers, and me that I have the strength to keep going for his sake.

Till next time, stay safe, stay HEALTHY!