Seized

Just as i posted that last entry Dad had another small seizure. We haven't seen him have any seizures since he had three in 24 hours about ten days ago, despite watching him like hawks since. During the seizure his head stayed firmly to the left this time, but his jaw twitched, opening and closing his mouth, as he stared straight ahead. He fell asleep straight away and i have let him rest and waited a little while before trying to rouse him from sleep just enough to give him another dose of morphine, but he is so deeply asleep that i cannot wake him even pinching his earlobe, so i will head to bed.

A day of visitors but few words

Mum's cantankerous old cat excelled herself this morning by vomiting all over the lounge moments ahead of visitors arriving. She has been in disgrace all day since. Dad has been almost mute today. These visitors were a work friend of Dad's and his wife and although Dad communicated with hand-grabs, looks and eyebrows he didn't actually say a word. As soon as they left i said to Dad "It was nice to see them again wasn't it Dad?" Of course, it was at that point that Dad spoke and said "Yes". The Macmillan nurse came during the afternoon and couldn't really evaluate the effectiveness of the patch we put on Dad yesterday. She said it was better to reconsider the dose when we replace the patch (which will be Thursday) so we have seen it at its most effective. We are continuing with the oramorph too. I asked her if Dad is in the sort of condition that she would expect at this stage from her experience of melanoma (and other cancer) patients and she said he is. Dad's head is still fixed looking to the left. He doesn't seem in pain when he is still but when the nurses move him to wash him and change his pyjamas he makes such a face it looks like he is in agony. I find it really hard to see him like that, but the Macmillan nurse said not to worry that he is in a lot of pain as it is quite likely also an expression of displeasure at being moved around and messed with. He has never been a very touchy-feely person, so although that makes sense, it still worries us. He only does it when his head and neck are moved and the only other thing he said today was "Ouch!" when moved by the nurses in the evening, so i hope the full strength of the patch comes into effect soon. Partly because of the position of Dad's head and partly because he cannot understand verbal directions anymore we are now feeding Dad liquids only and through a plastic syringe. We have been told we can continue like this as long as he can reliably swallow, which he still can. Once he can no longer swallow a line can be hooked up to give him medicine and fluids.

Patchwork

I held the fort this morning while Mum played tennis with some friends. I like to give her opportunity to do something other than look after Dad. She has been looking after him for longer than i have afterall. After thrashing her opponents on the court, Mum went to the pharmacy to collect the patch prescribed by the doctor last night. We decided to put the patch on Dad as soon as we could. The packet was really fiddly to open and after struggling to get into it we pulled out a tiny postage-stamp-sized little sticker which we applied to the top of Dad's arm. Each patch lasts 72 hours but we have been warned that it will take about 24 hours for the patch to have any effect, so in the meantime we are continuing to give him the liquid morphine (six spoons a day) He is still holding his head firmly to the left and proving difficult to feed in this position; which must be uncomfortable. He hasn't said much again today except when this morning's nurse asked how he felt today Dad's response was "downhill"

Looking awkward

Today has been a day of activity. My brother and my boyfriend were here so we put them to work fixing the fridge this morning. The panel-cover was coming away from the door and there was an almighty midnight-snack-exposing creak which needed fixing too. After the fridge came the firewood which needed chopping smaller. Dad has been quiet all day again. He fell asleep yesterday evening with his head facing sharply to the left and looked uncomfortable. Today he stayed in that position all day and seemed in pain when we tried to help him move to face anything other than the wall. We called the NHS out of hours service again and a doctor came to see Dad. She told us there could be several reasons for the neck pain and concluded there is no danger in moving Dad but that it is simply a question of comfort. We now have a prescription for a morphine patch which we can get from the pharmacy tomorrow. It will release 12mg an hour into his system, through his skin, for 72 hours so is a much more constant dose than we are currently able to give him. The doctor said that if it is only pain-related this may enable Dad to sit holding his head straight again. It is also possible however that it is caused somehow by the metastases in his brain and will not be remedied. At least we can relieve his pain, even if he sits a bit wonky.

Old Brain's Party Plan

Dad was quite chatty this morning. While i was feeding him breakfast he quietly said "Old Brain" I'm not sure what exactly that meant but he nodded and raised an eyebrow very seriously, as if it was something wise i should take note of. During the morning, when Mum was out collecting another prescription and i was sitting here dealing with work emails, Dad suddenly said "We'll have to make sure someone is responsible for drinks" I thought 'eh?' and asked which drinks. Dad told me we were having a party on Saturday and my brother should be in charge of the drinks. This was news to me (and Mum!) He hasn't said anything since that, but has just been sitting back in bed staring into nothingness. That 'party' conversation is the nearest any of us has got to having a conversation with Dad in weeks, so although it was meaningless really, it was nice. He has had a few moments of absence today where he has stared straight through me while i spoke to him and waved in front of him. I've also noticed that his right hand has jerked around on two separate occasions, like a local seizure of the hand alone and only lasting 10 seconds. It was especially obvious as his hand was flapping against today's newspaper. He is snoozing now. Drug-wise, yesterday we increased Dad's dose of morphine from three 5ml teaspoons a day to four teaspoons. He seems to be in more pain today again, so i'm not sure at what rate we should increase it, but the community nurse who is coming tomorrow will advise us. Dad is still on 8mg of dexamethasone daily.

We need to drink more

A conversation with the nurses today worried us. It turns out that Dad isn't drinking nearly enough fluids. We do insist he has drinks throughout the day but obviously not enough. We are now to try to get him to drink at least half a glass of fluids every hour on the hour. 
The Macmillan nurse came again today and has confirmed the planned reduction of Dad's steroid dose. So from tomorrow he will be on 8mg of dexamethasone a day (down from 12mg a day last week) He was still ok on 8mg a day last time he was on that dose. It was only when it decreased beyond that dose that he declined so visibly. We will see what happens this time. We are expecting that with the reduction of steroids the swelling in his brain will increase and with it, his need for the morphine.
We got Dad out of bed today so that we could change his bedding. He was much weaker as we stood him up to transfer him to a chair. We were not really surprised as Dad has now been in bed for 13 days, but it was still shocking to be faced with it.

Howling wind and the killer ditch

Today has been a quiet day, apart from the wind howling down the chimney. The nurses have come and gone. Dad's shave this morning was far simpler than the other day, partly because his beard wasn't nearly so established, but also i think, because the nurse shaving him was a 'no nonsense' type. Different nurses visit each time and some we are starting to recognise. The ones who have visited before have started to park down in the village square and walk up the lane rather than attempt to navigate the perilous drive and the killer ditch.
Mum was invited to a friend's for coffee and i convinced her to go. I kept on top of work from the armchair near Dad's bed while he listened to the radio and watched some television. The pharmacy finally got hold of Dad's medicines in liquid form today, so Mum collected them. These will be easier for Dad to take than the pills. We now have to work out and write down the equivalent amounts to make sure we get the dose of each correct.

Best laid plans

With so many people around but for a limited time, i asked my Aunt to take Mum out for lunch today while they went to the shops, to give Mum a break. I assured them both that i could hold the fort here and put Grandma to work as necessary. Sadly this brilliant plan wasn't quite to be. Dad's GP called and suggested he would pop round as well as a community nurse. Mum felt she'd rather be present to see what each had to say, so only went to the shops much later in the end, well beyond lunchtime.
The doctor reassured us that the advice of the Macmillan system was correct. For a period early last week when Dad seemed to dip, there was a debate where the Macmillan advice had been to reduce Dad's steroids further but the specialist had advised increasing them. Mum wasn't sure who to believe. The doctor today confirmed our belief that the specialist did that in the hopes Dad would be restored significantly again with a higher dose. Sadly this hasn't happened so the next step will be the reduction again of Dad's steroids. The nurse seemed only to have came to introduce herself and enjoyed a cup of tea.
Dad slept in the afternoon while i kept on top of work email, my Uncle read the paper and Grandma leafed through some books. Mum and my Aunt returned home with a two-way baby radio which was promptly assembled and played with. Mum is worried that she won't hear if something happens in the night, now that Dad sleeps downstairs. So now, instead of complaining about Dad's snoring, she plans to go to bed eagerly listening for it.
We are getting used to nursing teams coming and going throughout the day. The morning session seems to be around 9am and the evening visit around 7pm. We have requested the evening visit happens earlier though as 7pm has proved to be the time we all get hungry. The nurses are all very friendly but Dad is still getting used to all these relative strangers messing with him. Some of them cope better with Dad's friendly resistance than others.

What's the time Mister Wolf?

Dad's steroids have been increased again and that along with his absence of headaches, on account of the morphine, made him pretty chirpy today. I managed to get him sitting upright, take his medicine and eat a bit of dinner as well as some pudding. Mum made a bit of a breakthrough yesterday. She has been taking Dad meals in bed for the past few days and found he hadn't eaten much or sometimes anything. But yesterday she spoon-fed Dad and found he ate far more. She suspected he was feeling too weak to bother and was desperately worried that the end was very very near. But we now think that the cognitive process of knowing you must lift the food and put it into your mouth was perhaps disrupted. Either way, tonight he fed himself the pudding (yoghurt). Realistically, this could just be down to his increased steroid dose (they increase perkiness and give you a false appetite) but we are very relieved he is eating again (and Mum is glad she didn't manage to starve Dad simply by not helping him to eat the meals!)
Dad is still very muddled. He still refers to the remote control as the 'screwdriver' and is keen to know where it is at all times, even when the television is turned off (and he doesn't want it turned on.) I tease him gently when he says things that make no sense and he laughs at me. When he laughs though he screws his face up as if in pain because his face is less fleshy than it used to be. That has taken some getting used to. The doctor has decided not to proceed with Dad's radiotherapy for the metastasis on his left side. The effects take a while to become apparent and it could bring Dad more discomfort while not guaranteeing any benefit. We have been advised that Dad probably has 'weeks' ahead now rather than 'months' so bringing him extra discomfort at this stage seems unfair.
I chatted with Dad a bit tonight. Knowing his interest in Barbados since we lived there, I told him about hurricane Tomas which has just wreaked havoc in Barbados and which is currently battering St Lucia and on it's way to Haiti. I showed him the coverage of Qantas' A380's engine explosion in today's paper too and he asked if my boyfriend's sister was worried about 'her planes falling out of the sky' She is Australian (like my boyfriend funnily enough) and met Dad when she was here in September (so recently flew to Australia) Maybe that's why he said that? Dad also made an extra effort i noticed, to sound normal when speaking to Grandma on the phone earlier. Dad has these glimpses of himself and of alertness which peep out from behind the fog of confusion from time to time. Which reminds me, he can no longer tell the time. I spotted him looking at his watch earlier and asked him what the time was. His response was to look at his watch again, fold his arms across his chest, announce "I couldn't tell you" and then laugh.