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.

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.

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.

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.

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. 

The Doctor will see you now

I find Dad's oncologist factual but not very forthcoming with information. I suppose I should not be surprised since melanoma is notoriously unpredictable. Having said that though he gracefully suffers Mum’s & my endless questions and we are grateful that he treats us intelligently and sensitively. At Dad’s most recent appointment on 1^st October Dr seemed happy with Dad’s progress after completion of his radiotherapy. He wants Dad weaned off the steroids on account of muscle-wastage concerns, since Dad is quite thin now. For the first time in a long time though, he expressed interest in the metastasis in Dad’s left armpit. Dad will have another full body scan in a fortnight and then they will make a decision on whether to operate or treat with radiotherapy or chemotherapy. Left to its own devices this metastasis would continue to grow and could become uncomfortable and painful. There is also a point at which it becomes too large to remove safely as well as a point at which, if Dad’s health deteriorated, surgery would not be safe (we understand this is due to the effect of anaesthetics on a poorly brain) To us this indicates that Dad’s brain is considered probably to be ‘well’ enough for surgery, as well as, more reassuringly for us, not anticipating anything scary happening suddenly. Mum and I were buoyed up initially by the brain metastases not being the priority for the first time in ages, although we are realistic and understand that may simply mean that everything possible has been done to curb the growth and effect of the brain metastases. We will see Dr again in three weeks; no doubt he is already looking forward to our next interrogation.

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.