Getting back to normal :-D

Started Husband on the slow release pills yesterday at 3pm. It works fairly well, in that it seems to 'kill' the pain completely for approx 4 hours, then it slowly comes back again, though not at the same high intensity. If we say that, on a scale of 1 - 10, his normal pain is around 7-8 (so he says), then this 'reduced' pain is around 3. It stays at that intensity all the way, to the next dosage. So, I have emailed our wonderful pain management doctor to ask her advice on what to do to ensure the pain stays suppressed ALL the way through to the next dosage - ie, either increase each dose, OR split the dose up to be taken at shorter durations? Or....?

He also remembered (as I should have) that the last few times he tried sleeping pills, he had mild hallucinations during the night, which disappeared in the morning. He thinks that the "wild" hallucinations of the last few days could be due to a combination of the morphine and the amitryptilline. He has had no hallucinations at all since he stopped the amitryptilline on Tuesday night, and last night he refused to take the new sleeping pill (dormicum) prescribed by the doctor, as he was terrified of hallucinating again. He slept most of yesterday, and most of last night, so I guess I will not be giving him the dormicum after all!

So, end result: A tired but relieved Husband (and me!), with Husbands' pain reasonably under control and NO hallucinations at all since Tuesday night! He still has the twitches, but far less than before. I am giving him a couple of days to catch up on all the sleep he missed during his wild hallucinations ride(!), then have to start getting him up and moving, and not let him sleep all the time.

Thank you all, for all your prayers and your moral support... and especially to my parents for keeping an eye on Husband the other day, giving themselves a huge shock in the process!!

So, please continue to keep Husband in your thoughts and prayers, so that the pain can be brought completely under control and we can then continue our fight against the cancer.

Till next time, stay safe, stay HEALTHY!

He 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!

One small step forward

Husband is slightly more used to the opiate now. When he is sitting up, there are zero hallucinations, and he talks absolute sense. It is only when he is lying down that he still has the hallucinations, the imaginary conversations, the twitching, etc. I have also adjusted dosages and timings slightly. Each opiate dose is (as of 4am today) at 6ml, so that he can go for 3 hours without being disturbed for the next dose. So, at 4am and then at 7am, 2 doses of 6ml each. Then at 10am, 3 Oxycontin tablets, which keeps him going for about 4 hours. Then at 2pm, 5pm and 8pm, opiate doses at 6ml each. Then at 11pm, 3 Oxycontin tablets and one Amitryptilline tablet which keeps him going till 4am again!

The target is to increase the dosage slowly, till he can go for at least 4 - 5 hours at a stretch. Can't rush it, as I also need him to get used to the side effects first!! I have had reassurance from 2 different sources, who have had first hand experience of seeing their loved ones going through similar situations, that the body DOES get used to the side effects, and once the body is adapted, then the pain killer aspect of the opiate continues, without the dozy aspect! Of course, each person takes different durations to adapt, but it DOES happen. So that was quite reassuring!

Husband's son (J) called yesterday and asked a question which he has been wanting to ask for a long time, but was a little bit scared to ask. Since Husband was not up to taking the call, J talked to me and finally asked me that question "What is the REAL prognosis". That is a slightly oblique way of asking "Is my Dad going to die?" The same question has been asked by Husband's younger daughter as well, and I am sure the same question is in a lot of peoples minds too.

Well, I guess everyone has to die at some point or other, and Husband is already 70 (still the best looking 70 in the world!!!). BUT, not anytime soon!!! The oncologists are still amazed at the cancer progression in his body. For one thing, all his soft organs (liver, kidney, lungs) are CLEAN. There is very very little cancer in the body. Even the cancer in the bone seems to be stable as it has not spread (just hit enough to cause the extreme pain he is in!!!!). As the onco's say "The disease weight in his body is VERY VERY light". The other thing that puzzles the onco's is the fact that it spread to the bone, without touching the soft organs. For colon cancer, metastasis to the bone is rare already... and metastasis to the bone without TOUCHING the soft organs - now that really is an impossibility as far as they are concerned. But then, trust Husband to be that 1 in 10 million! He will have to do chemo for the rest of his life, to ensure that the cancer is kept under control, but... he and I still have a few years to go together :-D.

My most fervent prayer is that we are able to ENJOY the time we have together, without the awful pain that Husband is suffering. I want to take him to the UK again next year (possibly our last trip there) to meet his family again, and our closest friend there (Kevin), and a few other close friends. I want to take him to Tg Rhu at Langkawi again, and to Phuket Pavilions on Phuket, and to Berjaya on Tioman Island. I want to be able to take him to see all our family and friends in both KL and SG, who have been here for us in this very very difficult time, and who I know will continue to be with us. For that, he needs to be pain free, and able to travel... so, please pray for him that he should find total relief from this pain, and that the cancer be eradicated.

That's it for now... till next time, please continue to keep Husband in your thoughts and prayers, and... stay safe, stay HEALTHY!