Melanoma - a warning

Next weekend is Father's Day in the UK and it will be the first one that Dad misses out on. He is in my thoughts every day anyway, but I know that Father's Day will be especially hard for me to face.

I came across this melanoma awareness video today and wanted to post it on My Dad and his melanoma because although I can no longer help Dad it could help someone else to avoid falling victim to this deadly form of cancer.  I miss Dad so SO much and want to help others avoid losing a loved one in this way.

Thankyou for the donations

Enormous thanks to everyone for your donations made in Dad's memory. We have now been told that the total amount donated was £1150, which went to The Heart of Kent Hospice and Macmillan Cancer Support. A bit even managed to go to an Australian cancer charity. So, thank you everybody, you have all been really generous.

Thankyou all so much

A bit of time has passed now but i just wanted to say thank you to everyone who made the time to come to Dad's funeral. We were overwhelmed by how many people came. I want to also say a special thank you to everyone who donated in Dad's memory. We were collecting in aid of the Heart of Kent Hospice, who are the organisation who helped us care for Dad. Soon i should know the total amount and i will of course post it here.

Dad's Funeral

Dad's funeral will be held at 11am on Monday 6th December at St Peter's church. Everybody is welcome, so if you want to come, please do. Dad loved nothing better than a gethering, except possibly one well-furnished with rum, so we will then adjourn to a nearby pub, as per his instructions.

Dad has left the building

The undertakers, having neatly avoided the ditch and made an impressive five point turn on the drive in their long vehicle, have now taken Dad. We are going to collect his death certificate and register his death. When the funeral details are confirmed I will post them here. We welcome anyone interested in coming.

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.

Seized

Just as i posted that last entry Dad had another small seizure. We haven't seen him have any seizures since he had three in 24 hours about ten days ago, despite watching him like hawks since. During the seizure his head stayed firmly to the left this time, but his jaw twitched, opening and closing his mouth, as he stared straight ahead. He fell asleep straight away and i have let him rest and waited a little while before trying to rouse him from sleep just enough to give him another dose of morphine, but he is so deeply asleep that i cannot wake him even pinching his earlobe, so i will head to bed.

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.

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.

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.

Grumpy Grumps

Dad was quiet today. He was awake most of the day but got a bit grumpy towards the evening. After a lot of fussing from the nurses, Mum asked if he was comfortable and he shot her a look so i asked if he needed anything or would rather we all piss off. I got told in a weak-voice "Piss off." Fair enough. He ended up dozing-off watching the television while we were eating dinner, rather noisily, across the room. My brother came today after work, so is here for the weekend. This helps us tell one day from another. We will have a full house tomorrow as my boyfriend will be here too. He has been away completing a course, so perhaps tomorrow we ought to celebrate the end of his exams with that party Dad mentioned. My brother will be in charge of drinks!

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.

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?

Stressed?

Dad has slept all day today. He has only been awake briefly for some breakfast, a lunchtime yoghurt and while the nurses have been here. Mum went to the supermarket again today, to get the things she forgot to buy (but which were on her list) yesterday. Once there she called me to ask me to read the new shopping list to her, which she'd left by the front door...

Absent without leave - passive seizures

Dad has been very quiet for a few days. He thumbs a few pages of the newspaper but doesn't really read it, despite having read one every day of the 29 years that i have known him. He often stares at the television for long periods but we can't say how much he is actually interested and how much he is drawn to look in its direction simply because of the sound and motion. He is not interested in food, but mostly puts up with us spoon-feeding him and seems annoyed almost at our insitence that he tries to drink more too. He told me the other day "Stop trying to pump me full of water"
After Dad's recent seizures i realised that he has, i think, been having seizures for a while, but seizures of absence rather than active physical seizures. There are periods where he stares at nothing and it is impossible to get his attention through talking and waving at him. They tend to only last 10 - 20 seconds each time, but it has happened several times most days. He often says a few words of a sentence and then suddenly stops without finishing it. We had noticed that he 'zoned-out' every so often, but it was only after seeing him have an active seizure that i really thought about it. I'm sure he was only confused last night though, when he hiccupped loudly while the nurses were here and i said "Been on the sauce again Dad?" and he replied "No you've been on it for me!" Serves me right for being cheeky.

Goodnight is the hardest word

Night-time is hard. I spend all day every day with Dad at the moment and i find it really hard to say Goodnight to him. Even though he squeezes my fingers in his hand and tells me goodnight too. I don't like leaving him downstairs in the dark all alone, especially now he is so weak, skinny and confused. Worse still are the mornings. I know it is very possible sometime soon that i will go to wake him in the morning and not be able to.

A chat with Grandma

Dad seemed more ready to wake up this morning than yesterday. He was stirring as i opened the curtains. He also had a small glass of juice, some papaya and most of a yoghurt for breakfast, when yesterday he didn't want anything. Grandma phoned this morning and Dad wanted to speak to her. He only really said "yes" a few times (i'm not sure how appropriately) but Grandma knows to keep conversation simple and not expect too much conversation from Dad now. He then looked keen to have a look at the newspaper, but has fallen asleep on page 2, with his arm across it. Mum's annoyed. Having gone out to the shop in the rain to buy it, she was hoping to have a look at it!