Hands and feet

So mum and Maya have finally taken an evening off. I'm filling in for them at dad's. I went in before dinner to say hello, but dad was fast asleep: knocked out by 10 mg of oxycodone. Dad woke up and called for someone just as mum and Maya needed to leave to go and see Karin Bloemen, so I went up to see him... and stayed there most of the evening tending to all sorts of things he mumbled about.

Dad was very busy reading the top section of the terms and conditions. He also needed a drink. But he had to go to the toilet... He thought hard for a while. Then said, "I don't think there's anything in the terms and conditions about that," and then added, "so I think it should be okay..." I confirmed that it indeed was okay, so he started getting ready to get up. Once he was sitting upright, he wanted me to pull him up into standing position. "You have to put your feet on the floor first dad." "Oh yeah... that's a good one. Hands on the floor first." Once dad was sitting on the edge of the bed, I held out my hand and positioned myself sturdily to be able to hold dad's weight. I presumed dad would get up into the direction he'd walk to the bathroom... so I was standing at an angle to the bed. Dad wasn't planning to make two movements at the same time though (up and turn), he was going to do them one by one. So I should be standing perpendicular to the bed. And dad knew this. His hand instinctively pointed to where my back foot should be standing, and funnily enough, my foot knew exactly what dad's hand meant even before I knew what was going on. My foot was suddenly in place (my tiny private aikido lesson) and dad pulled himself up.

Back in bed, dad started talking to me, wanting to update me on happenings. "Oh, you don't know," he started, "I've been sick today. Been sick... sick." I sat next to him on the edge of the bed as he lay on his side. "That's a nice hat! ...is that your white hat? It's a nice hat." "It's a skirt though..." "Oh, but it's a skirt, of course. It's a nice hat that. Makes a nice hat." "Thank you."

"From the drinks section... some milk!" I brought dad some more milk. He'd turned to his other side, and then said, "So, lets try the new game..." I waited, wondering what game we were going to try. "The new game... lift up my shoulder!" Lift up your shoulder?? Ehm, okay... "Which shoulder?" "My left shoulder." "So the shoulder you're lying on." "Yeah." Hmm, okay... well, ehm... lift up his shoulder. Right. So I bent over him and tucked my hands under dad's shoulder. He didn't protest so it was apparently exactly what I should be doing. So I lifted... and then I understood, because dad said, "Yeah and now I tuck all this under my head." and he punched up (read: poked) his pillow so it wasn't under his shoulder, and it was nicely bulged under his neck. That made sense. I carefully set his shoulder back down.

Some time passed as dad rested. And then I heard, "Helloooooo!" so I went to see him. Dad was sitting up straight. "You got up!" I said, in surprise. "Sat up." he corrected sternly. That made me grin. "Yeah. You okay?" "Yeah... I smelled tea!" He smelled tea? Hm. I hadn't made tea. But I was actually about to make tea. "You want some tea?" "Yeah!" and then he added, "...you got string!" and he pointed at this:

String.

"That's my hair..."

"Ah... and you got stick!" and he pointed at this:

Stick.

"Yeah. That's holding my hair up, like this..." and I turned around to show him:

String and stick.

"Yeah. String. Cuppa tea would be nice!"

"I'll get you some tea. Anything else?"

"...piece of paper! Glassa milk first."

I came back up with tea and milk, but no piece of paper. Dad was sitting, gazing into his lap. He didn't react to me. So I asked "What are you thinking?" "I'm trying to zoom in." "On what?" "The piece of paper." "There isn't a piece of paper though..." that made dad laugh... "Now that's an interesting thought!"

Later dad told me he was trying to make the contract. He was reading it backwards, and it wasn't there. "Is no good. But we can't make it on Dutch paper anyway... need some English paper..." "What contract do you mean?" "The contract! Must get the job done." Dad was struggling for a while with difficult contracts and terms and conditions... so I suggested, "Your thoughts are all so serious... They don't have to be you know, you can also think about fun things!" "Aaah!" Dad turned to his other side, and said, "I turned this way now. Come this way. To all the fun." So I went to the other side of the bed and sat next to him again. "Ah. You left the tea." Yep, I'd left the tea on the bed side table... "It's good to have drink there when I wake up. But if you didn't bring the tea, then give me the hands. And you take my arms and then I can get up." Give him the hands? Huh? "Where do you want the hands?" "About the middle of my back." Riiiiight.

Eventually we figured it out, he just wanted to be pulled upright to go to the toilet. After he came back, he sat in bed again, leaning all the way forward... "I'm trying to find central gravity..." he said. And mumbled quite a lot more about central gravity. After dad'd lain down again, I was about to leave him rest. I walked towards the door and dad said, "Thank you..." "You're welcome."

The last time this evening that I went up to see dad, he was in deep thought. "Plants... plants can be clever! Clever, plants." a little while later, "We could use that for something!" "That's an interesting idea..." "Ah, you understand me!?" "Sort of... how did you come up with that idea?" "Right in front of me..." he pointed at the huge bouquet of flowers Steve and his family had had sent to dad. Then he added, "You could use that big bunch that's right in the middle [all the stems], but use it from something boring like rhododendrons. Then stick in interesting stuff in stead." he contemplated that for a bit, and then suggested, "Yeah, you could do that with plants that look like Sjoerd..." "Plants that look like Sjoerd?" "No, shit! Plants that look like shit..." "Aaah..." "Like rhododendrons or rhubarb. Yeah, you could use rhubarb."

After a while, I tucked dad in, and got ready to go downstairs.

"Thank you very much for everything..."

"You're welcome."

Eleven

Mum went to see dad around 8am. Dad was sitting up and wanted milk and tea. He had had another bad night, and was feeling sick. His tummy and liver area were painful, which made mum worry about a possible bile duct inflammation. Dad's body temperature was okay though, and there was no itching feeling. Dad had his tea and his milk and then a 20 mg tablet of oxycodone. Mum asked dad some questions about recent events until dad got tired and lay back down.

Then dad slept—and slept. And slept.

Nurse Helen came, and mum talked to her about dad being extremely fatigued and feeling sick. Helen said that was a very violent reaction to the oxycodone. She suggested talking to the doctor about supporting the pain in a different way. So mum called the doctor, who sent another prescription for the same oxycodone, only the 10 mg which he had meant the chemist to give out in the first place.

It is getting difficult for dad to get to the toilet. He knows when he has to go, but it takes about twenty to forty minutes to get from that realisation to calling someone to help him up, to sitting up right and then resting from sitting up right, getting his feet onto the floor, resting from that change of perspective, to up on his feet, to actually getting to the toilet in the next room...

Mum's parents opa and oma came to visit dad briefly today. They spent their time with dad asking him a few questions about the thing dad loves: aikido. It was good opa and oma were able to come despite oma's back pain. And it was good they saw dad with enough energy to be alert for them.

In the afternoon, around 15:20, Maya was in the room with dad. Suddenly dad needed to know exactly what time it was, and insisted it should be something with 11. There was some confusion about the exact time, and couldn't it just be 11 seconds... after a very intense and somewhat scary few minutes it was settled and dad could fall asleep.

Today was the first day dad has had nothing at all to eat.

Jack

Dad woke up at 8 in the morning. He had another bad night last night. Every time he says that, I think of what Marc said when he was here: that dad might just not know what a bad night is, exactly. But then, this time, dad did have a specific bad memory: a pounding on his chest. But at the same time he felt a huge gratitude, and a feeling of completion of what was going on. Mum wondered if it perhaps had been Jack who'd come to visit dad in the night.

Mum made tea for dad and herself and sat and drank it with dad. Mum had opened the curtains to a beautiful picture of white roof tops and snowy trees and gardens, which dad was extremely pleased to see. Dad happily sat watching the snow for ages, until he got tired and lay down. Still though, the curtains had to stay open for him to see the pretty outside.

Today dad is feeling pain. The fentanyl is not sufficient any more. Luckily, the doctor turned up unexpectedly (he'd called dad's number to announce his visit, but of course dad's phone was not reachable) to start the paracentesis that was suggested on Thursday. This visit gave a nice opportunity to talk about pain relief. The doctor suggested dad could start taking oxycodone (an opioid receptor agonist like morphine) tablets, 10 or 20 mg as needed. He also prescribed a certain cream to relieve some of the fluid pressure pain on dad's belly, and also to diminish the dryness of dad's skin.

Unfortunately, the paracentesis itself failed. The first needle puncture did not draw any more than one drop of fluid. The second attempt from a different angle got so painful that dad had cried out, "Stop that!" so the procedure was cancelled. Dad will now just have to endure the massively uncomfortable fluid retention in his belly.

Dad didn't much enjoy the dinner Nel had cooked today, but he was okay to have mum, Maya and Galen eat upstairs with him. After dinner dad had a rest, and at about 21:30 dad wanted more drugs. Dad was given 20 mg of oxycodone (the chemist had given 20 mg tablets in stead of 10 mg, so handy), but he spat it out straight away. He wanted to do it himself. So Maya put the tablet in dad's hand and dad swallowed it down with some water. Twenty minutes later, he was completely zonked out.

Sunday

Arjan came to visit dad briefly around midday. He'd had an appointment with Simon last Tuesday but had arranged it with Simon, not with Liduina. So when Arjan extremely decently phoned Liduina on Tuesday to make sure the visit was still okay, Liduina didn't know about it and told him no! A day or two later Martijn explained to Liduina that Arjan had actually properly arranged the visit, so Liduina made sure Arjan got a slot of time with Simon today. But Simon was so tired, that the slot of time was no more than about 10 minutes; Arjan had not even been able to finish his tea. It was good that he'd come though.

Simon's getting uncomfortably bloated and more and more confused. Since yesterday it is also more difficult for him to get up from his bed. Simon still drinks gallons, if it's not by now barrels, and has started eating very, very little. He only had a tangerine today, and a few prawns (Nel- and Mayamade™ with garlic oil) for dinner.

Camper adventure

Before seven in the morning on the first day of the weekend, the entire street was woken up by the camper alarm. It woke Simon as well, and he had to phone Liduina who then phoned Maya who then had to go and sort things out. Even the police came round to find out what was going on. The camper alarm is malfunctioning, and needs resetting by the garage.

On top of all this morning fun, Simon had had a bad night. He thought it was because of lack of drugs, but he didn't really need any fentanyl because he wasn't feeling any pain...

Liduina's brother Marc came to see Simon today. He drove over specially from Frankfurt. That was much appreciated. Marc and Simon had a nice conversation, and at the end of it Simon said to Marc that it had now been enough. He does not want to receive any more visitors after Marc. Except of course for the three appointments that have already been made (Arjan tomorrow, Liduina's parents Opa & Oma on Tuesday, and then Matthew's daughter Katherine on Thursday). And it is a good decision. Simon does his damnedest to be as alert as he can whenever there is a visitor, but it sucks out all of his energy. He has to sleep for the rest of the day to recover, and we're starting to notice that that recovery is not happening completely any more.

Liduina and Maya visited the hospice and found all sorts of pro's, but also many cons for Simon being moved to there. The biggest con was that one of the ladies currently there is allowed to smoke—as long as she's there, Simon stays with us. No question.

Marc treated the family to an Indian take away and ate upstairs with Liduina, Maya, Galen and Simon. Simon had his prawns, but in masala sauce in stead of the Simon Special, and he only ate a tiny bit of the portion. After he'd done he needed a rest straight away, no time for after-dinner-tea this time.

Blog

Simon had planned to start a blog from the very beginning of him falling ill, so people could know what was going on without him having to answer the same question with the same answer fifty—a hundred?— times a day. Somehow, he never did start that blog. He kept answering the countless messages he received. Eventually he started filtering them and only answered some. Then he stopped replying but still read them. Now his cancer has progressed to such a stage... or rather, the fentanyl has now made him so drowsy that Simon has switched off his iPhone. His iPad is covered in dust. His MacBook Air is somewhere on the floor, with the lid down. Who would have thought! Simon, disconnected from the electronic world. Gasp. At least his iPhone is still under his pillow.

Anyway, there are lots of people who still want to be informed of news concerning Simon's health, and the easiest way to communicate such information is still the blog concept. I passed the idea of me writing it by Simon this evening, and he liked it. So, here it is. If you have anything you'd like adding in a post, or if you'd like to have author rights for this blog so you can post messages yourself, let me know.

This page will hold seven posts at a time (or maybe more or less, if I change it later), with the most recent at the top. If you want to start reading from the beginning, you'll have to scroll right down to the bottom post, or maybe even click back to the previous page. Or, more easily, you can click here to go to the first post. You'll then see only one post per page. At the bottom of the post, you'll see the link "Newer post". Click that to see the next post. The link "Home" sends you back to the main page with seven (or more, or less) posts, and the link "Older post" loads the previous post. There's also an archive of all posts to the right of this blog. And above that, a place to enter your e-mail address if you want to receive e-mails when I (or someone else) adds a post. Oh, and a 'post' is one of these messages, in the lighter coloured boxes. You can comment on posts if you want, by clicking on the comments link below a post, then writing in the little box that appears below the post, and clicking 'Publish'.

Happy reading!

Coffee

Doug came to see Simon today. He spent the large part of an entire hour with him, and Simon was quite alert! Simon thoroughly enjoyed seeing and talking to Doug. He told me later that when it was time, it was hard to let Doug leave.

After Doug's visit Simon was very tired, so he slept. He managed to sit up for dinner (Nel's sauerkraut & mashed potato with bacon and sausage) but most of what he said was mumbled and rather confusing. I offered to make Simon some coffee, which he gladly accepted—as long as Maya made it. So I made tea for Liduina, Maya, Galen (who came back from Maastricht today) and myself. And Maya was left to make the perfect cup of coffee.

Simon is getting more and more confused, and the fentanyl is causing him to mix up his thoughts and create random associations (like all visitors playing the flute). It makes for interesting conversation.

Tomato juice

The night nurse came for the first time last night. Simon does not like it, but he understands she has to be there so that Liduina, Maya and Galen can sleep at night without having to worry about him.

Nurse Helen noticed Simon's belly is filling up with fluid, stretching out. This ascites can be extremely uncomfortable. Helen suggested we have the GP do a paracentesis (ascitespunctie), to relieve some of the pressure. Simon likes this idea. He says the ascites is now actually the only thing causing him discomfort. So Liduina spoke to the GP about a paracentesis, but according to him it would give relief for maybe only two or three days...

Simon had some Mayamade™ miso soup for lunch which he enjoyed. For the rest, he didn't eat much, but he drinks gallons of all sorts all day long—and still cannot quench his thirst. He has tomato juice, vegetable juice, ginger ale, milk, tea and of course his super special home made mix of lemon juice, sugar, salt and water.

Martijn came to visit Simon for an hour, and was lucky to find him rather alert. Martijn even got Simon to phone Eric, to make sure that Eric knew that it was Simon's intention to have Martijn take over the dojo. After his visit to Simon Martijn stayed another two hours to talk to Liduina.

I came round to see Simon during dinner time again. Simon was feeling well enough for Liduina and me to eat upstairs with him.

Spoilt

Simon had a sausage and an egg for breakfast today. Then he went back to sleep for the rest of the day. Sjoerd and I came for dinner, but Simon was so tired he wanted everyone to eat downstairs. When I brought him his food however, he did start talking to me about how his day had been. Simon had been noticing changes in the way food and drink taste.

I asked Simon if he'd like me to let him eat his dinner alone. He said yes. But then he added: "Unless you'd like to stay!" and I would, so I went to collect my portion of Nel's potatoes with broccoli and white sauce with chicken, and had dinner with my dad.

I asked Simon if he was having fun. A bit of a difficult question to answer of course, so he didn't really answer. But after dinner, when Simon was tired again and drowsy, he mumbled that he was wondering if he was being spoilt. I asked what he meant, and he said "Just wondering if I'm not having too much fun…"

"You can have all the fun you want, dad" "Aaah, okay!" he exclaimed in relief.

Grim Reaper

The GP came in today—dressed in black—and asked how Simon was doing, how he was feeling, and Simon had said he was okay. The GP also stressed that if there was anything at all Simon still wanted to say to anyone, now was the time. And also the other way around: if we have anything to say to Simon, we should do it now, not tomorrow.

Simon was tired after the GP visit and wanted a rest. I asked if it would be okay if I stayed and did some work in the room while he slept. Simon said that would be fine, and then added: "You're that scared are you?" — "Not scared, just don't want to miss it if you wake up for a bit."

Adrian came to visit Simon some time after that, and then stayed a while to talk to Liduina and Maya. Simon said it was good to see Adrian, but didn't want to go into any detail. I think he'd had enough of touchy-feely talking after all the doctor's questions.

The help

The current household situation is as follows. Helen the nurse comes in an hour a day to help Simon with Simon-related things, and talks to Liduina and Maya about how things are going and offers suggestions for problems and handy attributes for practical issues. Gloria the cleaner comes in on Tuesdays and Fridays to clean the house, and man, the house has never in the history of the Deerings been so clean! Then there's Nel the cook, who cooks, obviously, every day for whoever comes for dinner plus more to freeze. Nel also helps with all sorts of anything around the house. And from Thursday onwards, there's Genevieve the night nurse. Liduina and Maya are busy all day long looking after Simon and phoning all sorts of people to organise all sorts of organisation-needing stuff, and then suddenly it's evening.

It's hectic. And perhaps it'd be more peaceful for Simon to be in a hospice, where it's always clear who does what and when who is where and why. It would be easier for Liduina, Maya and Galen too. But on the other hand, Simon is confused as it is. If we move him to a hospice, into a room he doesn't know, with furniture he doesn't recognise, what would there be for him to hold on to alertness by? If I were Simon, I think I would prefer to spend my last week(s) in my own familiar home... But I'm not Simon, and maybe Simon doesn't want so many strangers in his house more than he doesn't want to be in a hospice... who knows?

The day that news came

Liduina phoned me late in the evening after another hectic day: the oncologist had contacted her with blood test results. I wasn't given any details, but apparently the results indicated that Simon's liver function is now absolutely insufficient for what his body needs. The practical meaning of this is that Simon has about two weeks, maybe more, perhaps less, until he will lose consciousness. After that, it's a matter of days to a week or two until his body gives up without nourishment.

Now that Simon's liver is unable to adequately clear out all the poison from Simon's blood, Simon will get more and more hazy, sleepy and confused from the fentanyl (an opioid receptor agonists about a hundred times stronger than morphine) plasters and nose spray.

The oncologist had planned to perhaps give Simon a blood transfusion to make him feel better, but decided against that because Simon's haemoglobin levels were fine... to me that sounds like a strange reason not to give a blood transfusion if the primary goal was to give some clean blood to a person with dirty blood, but oh well. So now that the blood transfusion won't be happening, there's nothing more the oncologist can do for Simon. Simon's GP (huisarts) has now taken over doctoring Simon.

Before the weekend I was wondering, Simon is getting more and more confused because of the fentanyl. He's taking the fentanyl against pain. The pain is actually due to a blocked bile duct (from the gall bladder). The blockage is also causing Simon's jaundice. One doesn't need a gall bladder to live. So if the surgeon were to remove Simon's gall bladder, the pain would go away, and Simon would not have to use (as much) fentanyl any more, and he wouldn't be (as) confused. Why not remove the gall bladder? Liduina relayed this question to a nurse, who acknowledged the idea. Unfortunately, it is now too late for removal as the cancer, liver and gall bladder are apparently all one big bulk of grown together mess. Ouch.

All in all, it's a good thing Simon's brother Matthew was here for the weekend and got to see Simon in an alert state for most of the evening on Saturday! It was a nice family dinner—with Simon, Liduina, Matthew, (my) Sjoerd, his boys, me and some music—which lasted till an hour or so before midnight.