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.

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.

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.

Scan news

This week Dad had a full body scan, the first since September and the completion of his radiotherapy. We have noticed over the past fortnight that he is increasingly tired, confused and headaches have returned, so feared the worst, but in fact although it revealed that the metastasis on his left side is growing (two months ago it was 4cm and it is now 6cm) it also showed that the whole brain radiotherapy has slightly reduced the size of the metastases in his brain. The oncologist, recognising the return of symptoms, has increased Dad's steroid dose again. He is now on 4mg of dexamethasone a day (originally put on 16mg a day back in August and since weaned down to 2mg a day week by week) This should reduce the swelling surrounding each metastasis in his brain, reducing the pressure on his brain and hopefully the symptoms. We were told Dad is not well enough for an operation  but he will be given radiotherapy for the metastasis on his left side.
Scans aside, Mum and Dad are doing well for cake at the moment, as their neighbour is kindly providing a regular supply of home-baked goodies. Dad has always had a sweet tooth, so he is very much enjoying this. He even has enough appetite to wolf down several at a time! Some golfing buddies came round and my cousin visited too with his girlfriend. Dad enjoys seeing people but gets tired quickly at the moment and zones-out a bit during conversations. Having said that, he was cheerful at lunch out on Saturday and when asked how the doctor's visit was he replied "He was very well thankyou!"

Gastro drama

I went to see Mum & Dad this weekend as usual, only to find they were both suffering from a nasty gastrointestinal infection. It was a weekend of uncertainty involving many hurried trips to the loo or to spew. Surprisingly, Dad fared slightly better, making a speedier recovery than Mum whose stomach gurgling was audible across the room. We quickly changed our plan to go for a swim. In terms of Dad's progress, the only difference i noticed in Dad was that with the decreased dose of steroids he is a bit forgetful. He asked me three times over three days when my brother was coming to see him, when he wasn't planning a visit this weekend. Mum says Dad has never been a great listener though, so it's hard to identify this as any sort of development. Both seemed better gastro-wise as the weekend progressed but of course now i have it!

Events so far

In June Dad occasionally felt unwell, but didn't think enough of it to tell us. Then in early July he started to feel regularly nauseous. This became daily and he was occasionally productive, although he ate very little and had started to develop increasingly nasty headaches. A routine scan (he has had regular scans since his original diagnosis) found a new metastasis in his left armpit, but no explanation was given for the nausea or headaches. Four weeks later, in early August, Dad was very confused and had symptoms of CNS damage. He needed coaxing out of bed and help doing basic things like shaving and shoelaces. At this stage he was unrecognisable from his old self and although he was physically in the room with us, the real him was miles away. We were all very alarmed and scared, but tried to keep as normal as possible for Dad. Then on the 17th August Dad had a scan of his head. This confirmed that his melanoma (originally on his back, at his original diagnosis three years ago) had metastasised again, this time to his brain. Looking at the scan it was clear the metastases and the edema surrounding them took up over half of the space normally available to his brain. Dad was prescribed steroids and advised that once the steroids had reduced the pressure in his brain and it was safe to proceed, he would have a course of radiotherapy. The steroids had an amazing effect. Within days we saw clear improvements in Dad, some of his symptoms vanished completely and the nausea went away while his headaches gradually became less frequent and less severe. Basically, we got him back. He has now completed the radiotherapy and other than having lost some of his hair since treatment seems well. In himself, he is very positive and cheerful. I think he's amazing.