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.

Heroic Mum

Dad is getting a lot of attention these days. He has always been a person happy in his own company, gardening, golfing or reading the paper, so i think is a bit overwhelmed by it all. He had breakfast in bed this morning, then I trimmed his toenails (how, when your body is battling cancer, do they still grow?) and my brother and i shaved Dad while he was sitting in bed. I helped him to the shower and to get dressed. He took a very long time to eat lunch and because he is so slow to do things we are all tempted to say encouraging things. I think we must be careful not to overdo it though as he gets irritated. He snapped at Mum earlier and it broke my heart to see it made her tearful. She is doing everything for Dad these days and trying to cope with how she feels about it all at the same time. I have a few days at work each week, but she has no escape from this. Dad is not ungrateful. He knows we are all trying to help. It is the disease's affect on his brain which makes him speak his mind more than he would normally (one of his brain metastases is in the frontal lobe of his brain, the area responsible for your personality) Mum is intelligent. She knows this but is struggling to not feel emotional in the face of Dad's snappiness. A friend told me that she doesn't know how i cope with Dad's situation. I don't know how Mum does.

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!

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!"

Why are we waiting?

Perhaps it is futile at this point to ask why it took so long to discover the Melanoma had metastasised to Dad’s brain, as it is unlikely that the outcome could have been very different. I cannot understand it though and it still upsets me if I think about it. I am not a doctor, but my desperate search for information made two things clear to me. Firstly, Melanoma frequently metastasises to the brain (in over 50% of cases according to one article I read in a medical journal) Secondly, there are various common symptoms, several of which were evident in Dad. When I asked the oncologist why Dad had not had a full body scan sooner he told me that they do not scan people on the basis of it being ‘nice to know what was going on’ and that those symptoms could have meant many things. I understand the cost implications of frivolous scanning. What I don’t understand is how it could be considered frivolous when Dad was a Melanoma patient whose cancer was known at the time to be uncontrolled. I am not an ambulance chaser, but I am bitterly disappointed that Dad had to suffer for two months before being given any relief. For my own sake and largely because it brings Dad no help, I realise I must let this go.  

Bookworms and coffee

Having all now recovered from last weeks gastro incident, we all felt up to a challenge. Mum and Dad’s combined lifelong book collection has been sitting stacked against a wall at the top of the stairs for most of this year, since the bookshelves collapsed. So we went out, bought a bunch of bookcases and spent the day assembling. Or rather, I spent the day assembling under Dad’s direction, whilst my boyfriend steered us clear of Mum having a meltdown over the internet suddenly going belly up. When it came to putting the books onto the shelves Dad took a more active role by insisting on dusting some of the books and was keen to prioritise shelf space to his travel books over Mum’s French Asterix comic books. Dad seemed happy to look through some old favourites again, clearly remembering which books he enjoyed the most. He is getting confused every so often again though, as demonstrated on Saturday morning when he asked why I had changed out of the brown dress I’d been wearing earlier. This confused me as firstly I don’t own any brown dresses and secondly the only other outfit I had worn on Saturday was my pyjamas. It also immediately made me think of an incident two months ago in a pub when Dad put some sugar wrappers into his cup of coffee, stirred them in and then drank it. Thankfully Dad doesn’t remember much from that period. I will forever remember it as the moment I saw with my own eyes how seriously ill Dad was. As with most people, it’s true that he didn’t always pay attention to everything, but the lunacy of stirring rubbish into a drink before drinking it was not my Father. His brain metastases were still undiagnosed at this point, but all his symptoms pointed to them. 

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.