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.

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.

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!"

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.