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.

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.

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.

Piccadilly Circus comes to Ightham

Today has been extremely busy. The head continuing care nurse came early this morning to assess what sort of care Dad needed from her team. While she was here the bed arrived and was erected. Mum and i played with it to test which button did what so we wouldn't end up folding Dad in half once he was in it... The Macmillan cancer nurse came at lunchtime and helped us walk Dad downstairs. He needed a lot of support as he is very weak and wobbly on his feet but we made it. He opted to get into the bed straight away and reports it to be very comfortable. He is clearly happy to be reunited with Sky television; he watched a combination of BBC and Sky news for 4 hours this afternoon. He even waved Mum to one side when she stood in his view at one point. Then we had a pair of continuing care nurses turn up earlier this evening to give Dad a wash and help him brush his teeth. Mum also managed to pop out to the surgery to ask the doctor to prescribe Dad's medication in liquid form, as he is now struggling to take pills. In between all of this i have dived in and out of my work email. We are all wiped out now, even the cat, not that she did much. Mum did lock her in the garage for a few hours earlier though, who knows what she got up to in there.
Tomorrow we expect Dad's brother, sister-in-law and Dad's mother aka Grandma. It is much better he is downstairs now as he can be involved in everything with everyone. Mum and i have taken a few of our lunches upstairs this weekend to eat with Dad in the bedroom, but we can't do that with three visitors.

Loose connections

Today has been a blur of phone calls in between feeding Dad. I got a few calls from work, since i'm working from home, but we also had calls from the Macmillan nurse, as well as a regional nurse, that the Macmillan nurse has mobilised. Then a continuing care nurse called who will organise daily visits from even more nurses... I told Dad earlier that he ought to move over and make room for me as i'm getting confused too. A hospital bed is being provided for Dad which will make it possible for us to raise him to a sitting position at the touch of a button. On seeing the house the nurse has suggested setting Dad up down in the sitting room so that he can feel involved in things, rather than shut away Mrs Rochester-style. I think he has felt a bit left out today as the neighbour popped around with some more cakes and my brother came for the night. Both the neighbour and my brother have spent time with Dad, but it's not the same. Hearing talk and laughter downstairs and not being able to join in must be miserable. This afternoon Mum was having a drink and i was wrangling some work emails when we heard a floorboard creak above us. We both froze wondering if Dad was on the move and there was suddenly an almighty thud. We both hurtled up the stairs and found Dad on the floor by the bed. He had fallen over trying to get to the bathroom. He doesn't seem to have hurt himself at all and i helped him to the bathroom, then back to bed, with strict instructions Not to try to get up on his own. Recently we have noticed him sitting strangely positioned in bed occasionally, so suspect he has tried to do this before. Mum is now barricading him and her into their bedroom with a chair before she goes to bed at night to ensure he cannot end up falling down the stairs in the middle of the night.
Keeping us on our toes, Dad has a new code for us to crack. He kept saying to us each today that he wants to connect something. He has mentioned the television, the radio and making tea. He obviously wants something as he has said almost the same thing to each of us at different times during the day. I find this really upsetting as i want to help him but just can't understand or even guess what he wants.
This evening, my brother and i managed to groom Mum's elderly, vicious and alzheimers-esque cat. She has trouble grooming herself now that she's 21 and a half, so develops big mats in her fur. Anyway between us we managed to cut and brush most of the mats out and remarkably without blood-loss on either side!

Another Doctor

Dad has declined notably over the past week, even with an increased dose of steroids and now morphine. The days when he does not get out of bed are slowly starting to outnumber the days that he does. His appetite has vanished too and Mum has resorted to buying Dad's favourite biscuits, cakes and treats in order to tempt him to eat anything at all. This change in him provoked the Macmillan nurse to bring a doctor with her when she visited today. (Dad's specialist is on holiday this week and she wanted a doctor's opinion.) In evaluating Dad, the doctor asked Dad a few questions, most of which Dad gave complicated non-sensical answers to. Mum had been worried it might have been the effect of the morphine, but unfortunately the doctor confirmed this was due to the progress of the disease. I hate him being so muddled. It seems impossible that it is really him. I wait for him to tell me he is pulling my leg, an assurance that never comes. The doctor recommended we increase the dose of morphine to eliminate Dad's headaches. He also suggested the radiotherapy scheduled to start tomorrow may bring Dad discomfort outweighing the possible (but not guaranteed) benefits. So Mum is going to call the specialist tomorrow to see what he advises. Dad has some old friends coming to visit tomorrow, who he is looking forward to seeing. Will he or won't he get out of bed for them i wonder?

Morphine Time

Mum told me today that Dad has been extremely reluctant to get out of bed for the past few days and increasingly confused. Paracetamol is no longer touching his headaches either. The Macmillan nurse visited and has sought to up Dad's steroid dose, as well as provide him some morphine (as a nurse she cannot change medication but can tell doctors what she observes and recommend more appropriate medication if the situation has changed since you last saw the doctor) This has since been approved, so Dad is now on 8mg of dexamethasone daily and is taking morphine for his headaches. He says it is more effective than the paracetamol was, so that is something. I phoned Dad's Macmillan nurse to ask her about the change in Dad's situation and to ask her what to expect with Dad taking the morphine. She was very helpful with my questions about the drugs, but less keen to discuss how Dad may progress from here onwards. I had spoken to her briefly once before but it was the first time i've spoken to her at any length. She insisted i call her anytime i want to. I can't imagine doing her job. I think she and her colleagues must be very strong individuals.