Tuesday July 26th 2005

I am going to write more but I wanted just say this for anyone who has been following my dad's blog.
He died peacefully at 1.20pm on Monday 25th July 2005.
I will write more in a few days time about how his death came about.

Saturday July 23rd 2005.

It's been a while since I updated this blog, there's been nothing to add to it everything has just been the same until now.

I guess it started on Tuesday when dad refused food all day then in the evening he said he wanted some potato and gravy followed by homemade rice pudding not the tinned "muck" as he would say...lol
All day Wednesday he wasn't quite "with" us and refused food all day only had tea and lots of lemonade it seemed he couldn't get enough lemonade.
Even the nurse who came to give him his tummy injection decided not to give it to him as she thought it would upset him.
Then on Thursday morning he seemed a little worse very quiet even when we turned him to clean him which we thought was unusal as he'd been quite vocal upto then when we moved him.

Once again when the nurse came to give him his injection she decided not to give it to him as he was then getting quite upset if anyone touched him even just stroking his hand he moaned and said get off so she said it would be better for him to leave again after she had gone at 3.30pm we noticed a change in dad's breathing more deeper and he used to give 2 really big deep breaths then went so shallow you could hardly see his chest moving at the time we thought he'd gone into a deep sleep so of course left him but when my brother came to visit at just before 6pm and we went to talk to dad he didn't respond even stoking his hand or forehead he just lay there breathing like I mentioned above.

Of course this now got us worried so I called the doctor I was just too late to catch the surgery so had to talk to the emergency doctor which luckily it was one that had been to see dad a few weeks ago so he had a fair idea what was going on, when I explained what dad was like he said it sounded like he was unconcious and this looked like it was the end but he'd also known patients to be like this and then come the morning they had woke up and wondered what the fuss was all about.
He advised that all we could do was sit with him and talk to him to let him know we were there and he wasn't alone because as everyone knows the last thing to go is your hearing.

Dad had been like this since 3.30pm at 8pm we thought we would just wet his lips as they looked so dry we told him what we were going to do and as Claire gently stroked his lips with a damp sponge he got really irritated and agresive swinging his arms about and moaning to get off.

Thursday night I was expecting to be a bad one but surprisingly it was very good and passed quite uneventful until 4 am Friday morning.
He seemed like he was in more pain even though when you asked him and by now we couldn't really understand what he was saying but he made it quite clear that he didn't have pain but we weren't convinced. On Monday the doctor had prescribed dad some orimorph it's a kind of morphine in liquid form so that it can be swallowed easily not the injection type also it's the sort that you can't overdose on so she said that when he got pain if after an hour one 5ml didn't work to give him another and so on if nessarsary until the pain was under control.

This had worked great especially if we gave it to him about half an hour before moving him it seemed to take the edge off the pain.
Anyway at 4am Friday when he was in pain I tried to give him some orimorth and he totally refused he closed his lips and started swinging his arms about and wouldn't take it.

I felt so helpless knowing I couldn't do anything to help. So I called the emergency doctor it wasn't the same one that I had talked to earlier (I wish it had been) because when I explained the situation he wasn't helpful at all he just went on about having a pump fitted that administed morphine at regular intervals and to contact my own doctor in the morning about setting it up!!!
I don't know if I wasn't thinking straight but I just accepted what he said and put the phone down instead I should have asked why he wasn't coming out to ease dad's pain then and there and afterwards I thought what would have happened if that had been the point of dad dying and he'd died in pain!

So we tried to comfort dad as much as he would let us as he was very agresive again and wouldn't even let us touch his hand.

I called the surgery at 8am and asked if our doctor could call us before she started morning surgery just to advise us what to do, she said she'd get in touch with the district nurse and arrange for them to bring the pump out she didn't seem at all happy when I told her about the emergency doctor not coming out. She said that she'd try and get to visit but she was very busy with surgery in the morning, a meeting in the afternoon and then had to pick her kids up but she'd try and get sometime she also said that things wasn't looking too good and she thought that dad wouldn't last the weekend out.

Two nurses (Roland and Sarah) arrived just after mid day luckily just after I had spoken with Dr Driver at 8 I was able to get dad to take 10ml of orimorph so that helped a great deal until the nurses arrived.

When they arrived everyone thought it would be really simple and they'd get it all set up with no problems.. how wrong can you be!! No one had reckoned on my dad and taken him into account...lol.

Actually by the end I felt sorry for Roland he really did his best but there was no way dad was going to let him inject him first so that he'd be painfree and sedated until the pump with it's cocktail of drugs started to work. Eventually Roland gave up and said that is dad really didn't want it then he wasn't going to go against his wishes but he said that he'd need to make a phone call to the doctor to let her know what was happening he went through into the kitchen to do this when he came back he said that he'd just missed her and that she was already on her way to see us. While we waited dad was really upset and couldn't stop crying we all talked to him to try and calm him down and just when we thought he had he would start again.

When Dr Driver arrived Roland explained everything to her and she said right everybody out I want to have a word with your dad on my own. She didn't say it nastily as she explained when she had finished and came and told us we could go back in it was because she felt that with everyone being there it was making dad feel like he was being "got at" ganged up on if you like.

Anyway I don't know what was said but whatever it was she had got him to agree to have this injection and the pump to be fitted.
It would contain morphine for the pain and a seditive to calm him down and stop the aggresion against us.
He still shed a few tears while it was being set up but wasn't too bad.
Not long after the injection he settled down and actually fell into a gentle sleep.
Dr Driver stayed until 1.20pm until everything was in place even though she had a meeting at 1.30! She also gave us her cell phone and home number just in case we need her over the weekend even though she's not on call. She has been brilliant through all of this, she is one of these unsung heros that you hear about.

Later that afternoon Jackie the Macmillan nurse came to see how he was, both Roland and the Dr had contacted her to let her know how things were and after seeing him she also agreed with what Dr Driver had said about him not lasting the weekend.

During the evening dad started his weird breathing again where he did two deep breaths then some so shallow that if you couldn't see the pulse at the base of his throat you would have thought he'd stopped altogether. We timed one of these episodes and they lasted 20 seconds each time so in every minute he looked like he'd stopped breathing for 40 seconds.

Claire and myself worked out that she would take the early shift from 7.30pm til 1am while I went to bed then swop. I was a little early as I woke up at midnight so decided to get up, Claire said he'd been moaning a little like he was in pain and he also did the same with me every so often, that is one thing we will have mention to the nurse when she comes to refill the pump for the next 24 hr dose also another thing that we'll have to mention is that he is still slightly aggresive, at one point he opened his eyes so I started to talk to him and automatically stroked his forehead he moaned twisting and turning his head and not very nicely mumbled get off.

As I write this it's now 7.30am and although he's sleeping it seems like a troubled sleep as he's contorting his face every now and again, unless it's a sign of pain fighting through the drugs.
To us he seems like he is fighting death I just wish he would give in and let go.

Friday July 15th 2005. (4.30am even earlier then the other day)

Dad spent most of yesterday sleeping and when he was awake he was very down and sometimes confused he just couldn't get his head around where he was even though he remembered other things about the here and now, like the nurse visiting in the afternoon.
As well as dad being tired it also caught up with me and I felt like I could sleep for a week yet when I went to bed last night (thursday) and I went to check on dad at 2.30am I went back to bed and couldn't sleep. Either the mind or the body can be so cruel at times you would have thought they would have taken advantage of the quiet spell and got some sleep while they had the chance but no, I was tossing and turning and so's not to disturb hubby I got up at 3am.

Made a cup of coffee and watched a tv programme that I had taped from the night before then answered some emails, 2 in particular they were to the very nice people that made a comment in my last entry of my blog, thanks again Myriam and Mark your comments were much appreciated.

Even though I don't want to lose my dad I keep thinking when is all this going to end? So that he doesn't have to suffer anymore.
When he is alert and "with it" he's so frustrated that he can't get out of bed and it makes my heartache to see him this way and no matter what I say it doesn't help him the frustration is still there, to be honest I think when he is confused it's better for him as he doesn't think about being "trapped" in bed and he is off in a world of his own and at times that can be quite amusing to everyone including him, we don't laugh at him but with him.. I am going to be so lost when he goes!

Wednesday July 13th 2005.(very early 5am)

Since I last wrote, over the last few days everything has just gone on as normal whatever normal is...smiles. Although, dad has complained a little more about some pain in his tummy and round about his left ribs, he's also been coughing more and sounds chesty. Dr Driver was due to visit sometime this week but with him having the pain and the cough we asked if she could call yesterday (tuesday).

She checked him over and couldn't find anything significantly wrong with his tummy or his ribs but she thought he might have a slight chest infection so prescribed some antibiotics also some stronger painkillers in case the ones he's taking stops working as good at some point she also gave him some morphine syrup but that is only to take when the stronger painkillers don't seem to be working after an hour.

He got an appointment through the other day to go to the hospital for a check up we don't know if it is for a follow up of the radiotherapy or a check up for the 2 weeks he stayed in hospital as it's the same doctor that he saw while in there and who also did the radiotherapy. I asked the dr while she was here if the appointment was nessersary she thought in her opinion it wasn't as it wouldn't be fair to pull and push dad around only to be told what we already know that there's nothing else they can do but she still asked dad if he wanted to go and he said "no, no more hospitals" and at that point he became tearful the dr was brilliant she calmly talked to him about his feelings about dying asking if he was afraid to die which he said he wasn't but she still went on to say that there's no need to be and generally talked about meeting other members of the family again and that there would be a great big party once he got there. Dad isn't religious and has never been to church other then for births, deaths or marriages but the dr said that if he thought it would help to talk then our local vicar/minister would visit and chat with him he said he would think about it.

About an hour after she had left dad broke down again personally I think after his chat with the dr it is now starting to sink in and that he's finally realising that this is the end I asked did he want to see a minister and he said he was still thinking about it, in a way I hope he does as I feel it would help but that could be because I do believe in an afterlife and there is something better when we die but he might not so I won't push the subject unless he wants to.

I checked on him a couple of times in the night and the last time at 2.20am he was awake I asked him if he was okay and he said he couldn't sleep so I said I would sit and chat with him for a while, I made him a hot milky drink and we sat chatting about this and that until about 3.45am when he seemed to drift off to sleep but I kept checking on him and at 5.20am I asked if he'd managed to sleep and he said not much just dozed.

I feel he's worrying about what the dr said yesterday yet when I ask he says he doesn't know why as all it is now is a waiting game.

Will ask him later about the minister again...

Saturday July 9th 2005

It's 7.30am and it's been a quiet Friday night, I woke up at just gone 11pm so thought I would go and check on dad and he was sleeping peacfully.

(By the way I forgot to add on yesterday's blog when he woke during Thursday night he had complained of feeling dizzy when I mentioned it to the nurse he said it could be because he's anemic.)

I then woke again at just gone midnight and other then having kicked his bedclothes off he was still sleeping peacefully so I covered him back up without waking him and the next time I went to him was at 4am when I got up and he was still as I had left him earlier, I don't know why and I know I shouldn't complain as I also get some sleep but these sort of nights worry me I guess it's because now these aren't what we call normal nights and expect to be called or if we check on him he's awake of something but when he's actually just laying there quietly it worries me...Going to have another cup of coffee so more later!

Early afternoon 13.50.
The family said I could go out and have some time to myself for a while so I went and did a bit of shopping in Hull for a few hours on the way back I passed a strawberry field that is a "pick your own" so thought I would stop and pick some for tea and have strawberry flan and icecream.
When I got home they told me dad had been asleep all morning and when we went to see what he wanted for lunch he said he didn't want anything and would have something later. I've kept checking on him and he's been asleep ever since, told you earlier that he's seems to be sleeping way too much with last night and now today.
Below is a photo I took of dad after we had given him his wash and shave this morning if it look like he's asleep already he isn't as the photo I took after this he looked at the camera for me...

There might be an update later after the nurse has been.