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.

Patchwork

I held the fort this morning while Mum played tennis with some friends. I like to give her opportunity to do something other than look after Dad. She has been looking after him for longer than i have afterall. After thrashing her opponents on the court, Mum went to the pharmacy to collect the patch prescribed by the doctor last night. We decided to put the patch on Dad as soon as we could. The packet was really fiddly to open and after struggling to get into it we pulled out a tiny postage-stamp-sized little sticker which we applied to the top of Dad's arm. Each patch lasts 72 hours but we have been warned that it will take about 24 hours for the patch to have any effect, so in the meantime we are continuing to give him the liquid morphine (six spoons a day) He is still holding his head firmly to the left and proving difficult to feed in this position; which must be uncomfortable. He hasn't said much again today except when this morning's nurse asked how he felt today Dad's response was "downhill"

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.

Do Not Attempt Resuscitation

The community nurse came to see us yesterday and while here gave us a DNAR form; "as agreed" she said as she handed it to Mum. DNAR stands for 'Do Not Attempt Resuscitation'. It only refers to Cardio Pulmonary Resuscitation (hereafter CPR), not any other continuing treatments which remain in place. Basically it removes the obligation of any visiting healthcare official to perform CPR on Dad if his heart or breathing stop as a result of the progress of the melanoma. It is written and signed by Dad's doctor. Mum and i both believe that when faced with this situation, it would in fact be kinder to let Dad go, rather than to prolong him, probably only briefly, in hospital, having suffered great physical trauma and most likely in great discomfort. So we are not opposed to the form. We were both surprised however, to be presented with this form, without anybody having mentioned it or discussed it with us previously. At the time, since the nurse referred to the form as having been 'agreed' I assumed they had previously discussed it with Mum, but she was as surprised to see it as i was. i thought she was quiet. Advance directives and DNAR forms provide a means for patients to communicate what sort of medical treatment they would prefer to receive if they reach a stage in their illness where they are lacking the mental capacity to make decisions. When Mum and i both hold power of attorney for Dad it surprised me that the doctor didn't even mention this form when he was here a few days ago. He is their GP and as such has had a relationship with them for several years prior to the past few months. We were both quite shocked to find ourselves, without warning, holding a piece of paper instructing people Not to attempt to resuscitate Dad. However, although advance directives are often completed by ill people, DNAR forms can also be completed by a doctor, independent of any input regarding the patient's wishes, on the basis that in the final stages of incurable illness, CPR is unlikely to be clinically successful. Clearly that is the situation we are in and as i said, we do not contest the decision, as on balance we think it kinder to Dad. We are still a bit shocked though; wouldn't you try to warn the patient's family and discuss it, or at least explain the decision, rather than just hand it over?

Fits but no giggles

Dad had a seizure last night. It wasn't a full body seizure; it only seemed to affect his head, neck and shoulder, but it was still alarming. My brother and i were sitting with him watching television and we suddenly realised Dad was making a lip-smacking noise and shuddering. It lasted about a minute. We waited for the seizure to end and i looked inside his mouth to check he hadn't bitten his tongue, then lay him down to sleep. Mum called the NHS out of hours service and a doctor called us back about 15 minutes later. We spoke through everything and he reassured us that we were doing the right thing to let him sleep and that there wasn't anything more we could do. Having taught first aid for years i am familiar with treatment for epileptic seizures, but knowing Dad doesn't have epilepsy, wanted to double check the same treatment was correct for Dad's situation. Mum decided to sleep downstairs and i rigged up the two-way radio by my bed. I fell asleep listening to Dad's breathing. In the middle of the night i suddenly woke with a quick noise and the same lip-smacking sound Dad had made earlier coming from the radio. I raced downstairs and looked at Dad whose back i could just make out in the darkness was moving with his breathing, but who was otherwise still. Mum seemed unaware but had been asleep herself. This morning there were a few saliva-spots on Dad's pillow which i think is further evidence that he had at least one more seizure in the night. Of course none of us saw him fit after that first one, so we're just not certain.
He has been very quiet and very passive so far today. The nurses commented that shaving him had been far easier. I only managed to get one spoon of breakfast into him this morning. He retched a bit and we were worried he would be sick, so gave him some anti-nausea medicine and have put him in the recovery position so he cannot choke. He is sleeping now, snoring gently.

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.

Piccadilly Circus comes to Ightham

Today has been extremely busy. The head continuing care nurse came early this morning to assess what sort of care Dad needed from her team. While she was here the bed arrived and was erected. Mum and i played with it to test which button did what so we wouldn't end up folding Dad in half once he was in it... The Macmillan cancer nurse came at lunchtime and helped us walk Dad downstairs. He needed a lot of support as he is very weak and wobbly on his feet but we made it. He opted to get into the bed straight away and reports it to be very comfortable. He is clearly happy to be reunited with Sky television; he watched a combination of BBC and Sky news for 4 hours this afternoon. He even waved Mum to one side when she stood in his view at one point. Then we had a pair of continuing care nurses turn up earlier this evening to give Dad a wash and help him brush his teeth. Mum also managed to pop out to the surgery to ask the doctor to prescribe Dad's medication in liquid form, as he is now struggling to take pills. In between all of this i have dived in and out of my work email. We are all wiped out now, even the cat, not that she did much. Mum did lock her in the garage for a few hours earlier though, who knows what she got up to in there.
Tomorrow we expect Dad's brother, sister-in-law and Dad's mother aka Grandma. It is much better he is downstairs now as he can be involved in everything with everyone. Mum and i have taken a few of our lunches upstairs this weekend to eat with Dad in the bedroom, but we can't do that with three visitors.

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.

Screwdriver anyone?

A few days ago Dad asked Mum to go and get the screwdriver from his dressing gown pocket. She was fairly sure there wouldn't be one but went to check and there was no screwdriver or anything else in fact. It didn't seem to matter. Earlier today Dad surprised Mum when he was lying in bed and asked her again for a screwdriver. She asked what he wanted it for and he pointed at the television. My first thought when she told me was that it was alarming if Dad suddenly wanted to take a screwdriver to the television in an effort to repair it. Fortunately Mum was a bit quicker thinking and after a quick scramble about found and  gave Dad the television remote control which he seemed happy with. Of all the possible words, isn't it strange that 'screwdriver' is the first to pop into his head?
Dad's friends came to visit today as planned and he enjoyed seeing them. They had to come to his bedside though as he didn't get up today. Mum says he seems slightly less coherent each day but then shows moments of his old self. Apparently yesterday when the doctor asked if he knew where he was, Dad quickly replied "Ightham" with a look on his face that said 'if you don't know where you have come to see me, then what use are you?'

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!"

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.