Goodbye Dad

Mum, my brother and i were all sitting with Dad tonight when he quietly took his last breath and left us forever. He was calm and peaceful in life and he was in his death. He did not seem to suffer, but simply slipped away from us and out of reach. I saw a tiny flash of Dad yesterday when he seemed to respond to me speaking about his childhood dog, but i saw none today. It is better for him that his illness is over. If he was in any distress or any pain that we could not recognise then he is not now. I wish i could have done more; I would have given anything to save him, but although i loved him dearly i could not make him stay.

Driving on

After finding Dad the way he was this morning, while Mum was stocking up at the shops ahead of tomorrow's forecast snow, I called the surgery and asked Dad's doctor to call when he had the opportunity. I talked him through everything and he decided to come and visit Dad. He said Dad is tachychardic and has the beginning of bronchial pneumonia. He went back to the surgery and sent the community nurses to us to rig-up a driver to give Dad medicine, now that he can no longer swallow oral medicines. They came and set to. It is a tiny needle that is inserted just beneath the skin on his upper arm. It was the calmest he and i have ever been in the face of a needle (i inherited Dad's needle phobia) The driver has been set up to give Dad Midazolam, to prevent further seizures, and Glycopyrronium Bromide, to ease the infection in his lungs. The Midazolam sedates Dad too and his pain is managed entirely by the Fentanyl patch now which the nurses seemed confident was enough. He has been hooked up to the driver for about four hours now and is lying very still. We can hear his breathing which is quite fast and shallow still. We can also hear a little mechanised 'whirr' noise every 15 minutes or so which is the driver administering another dose. The purple tinge to Dad's knees is common in people whose bodies are starting to shut down and his hands and feet are much cooler now. Dad has been almost entirely unresponsive today. We are desperate to interpret an eyebrow twitch as an effort to communicate, but we are painfully aware that it is most likely a random twitch. Dad's eyes look cloudy now as he stares past us. My brother has come down from London tonight, so we are all here together.

Pale and Purple

This morning Dad is breathing very rapidly and his breaths are shallow. He is very warm and clammy and  had some blood in his mouth when i came downstairs; I think he must have had another seizure in the night and bitten his tongue. I've also noticed that although warm, his hands are a ghostly white and his knees look purple, while his shins and feet are a bit pale. The nurse who came this morning washed him and remarked that he did look different from yesterday. Early on the nurses declared what a 'lovely bottom' Dad had, but this morning the nurse found a pressure sore on his bum. So we have put some cream on it, in the hopes it doesn't burst and become even more painful for Dad. He is lying quietly now with the radio on and i am going to light a fire as it is freezing.

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.

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.

Talk and Cakes

Mum and Dad's neighbour has been very generously baking cakes and treats for Mum and Dad over the past few months. Quite independently this morning Dad cheekily said we were overdue a visit from the neighbour. As if by magic, she later appeared with a plate of chocolate brownies and scones. Yum. Dad has since been asleep. He has been very quiet today and only eaten the yoghurt we gave him for breakfast. He has complained more definitely of pain in his head today, so has had four spoons of morphine so far. This morning Dad was talking about 'going away' and being 'almost there' which alarmed Mum as she remembers Grandpa doing the same shortly before he died. Grandpa was lucid to the end though, whereas Dad's mental capacity is obviously impaired, so maybe he means nothing by it.

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.

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?

Lazy Bones

When i arrived last night Mum told me Dad had been in bed all day and the whole of the day before. I jokingly refer to him as 'lazy bones' when i see him in bed and on arriving last night, popped my head around the bedroom door to ask if he'd be joining us for dinner and eventually he did. With the return of his other symptoms (headaches and confusion) i think Dad's staying in bed is a result of his increasing passivity, rather than stubbornness. He seems to find it difficult to judge the passing of time. He can sit in one spot, with nothing to read, or without conversation, for a lot longer than he ever would have done before. Mum initially mistook Dad's reluctance to get up for stubbornness. She has the bedside manner of an angry elephant at the best of times, so there have been a few tense moments. We have learnt to give Dad oodles of extra time to get ready to go anywhere, especially appointments.
Dad had a measuring-session with the radiotherapy department today, in preparation for his next radiotherapy for the metastasis on his left side. He couldn't remember his birth date when asked (and laughed naughtily!) but was quick to recite the first line of his address. They have tattooed a tiny dot under his skin which they will align with other markers to ensure the radiotherapy is precisely targeting the metastasis. The radiotherapy will take place over 3 days next week.
Dad is mostly cheerful at the moment. He gets more pain in his head, but the oramorph seems to take care of that, for several hours at a time fortunately, so he is not taking much. He is sporting a bit of a silver-fox beard at the moment, which is strange to us as well as him as he has been clean-shaven his whole life. He is increasingly confused. Mum said she returned home from shopping yesterday to find him speaking on the phone. He said he was talking to the health insurance company and passed the phone to her. Mum found herself explaining the situation to a very confused insurance company employee as apparently Dad had called her, but behaved as if she had called him. He called his mother in the middle of the night a few months ago when he first had these symptoms too. In fact, Dad is sitting with me looking through the paper as i type this and he has just reached out, grabbed the phone and pressed a few buttons before putting it down again, so clearly it is something that attracts his interest. If you receive any strange late night calls from us we apologise in advance!

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.

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.