Monthly Archives: January 2016

Ethics

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Sunday 24th January

On Sunday it was another trip out in the mini ๐Ÿš— This time to Charlbury to show Gary’s mum and dad. They both liked it! Had a lovely latte from their new coffee machine and then back to the real world and home to get some jobs done :/

In The Guardian today there was an article entitled Chaotic lives and ethical dilemmas:ย Inside the hospital liver ward. Why not click on that link and have a read.

The people featured are all suffering with liver problems caused by alcohol. None of the people I have met during my own journey have caused their liver problems themselves through either drinking alcohol or being overweight. But these are often the first things people think when the words ‘liver disease’ are heard.

Since starting my course about liver transplantation one of the topics that I have found very interesting is the issues of ethics concerning organ donation.

We all know there is a very big shortage of organ donors. Should some of these very precious livers, when they become available, be given to someone who is very likely to just go away and start to abuse it with alcohol again at some point? But who has the right to deny someone the chance to live, when their drinking might be as a result of something they have suffered in the past, maybe mental, sexual, physical abuse. We should also think along the lines that the new liver could be the start of a whole new life for them.

And it’s not just alcohol that causes this problem. Non-alcoholic fatty liver disease (NAFLD) is growing fast, as a result of people’s diet. Whose to say that once the recipient gets the liver, they don’t make any efforts to help themselves and change their diet?

Would I also be included in this as the illness that damaged my liver may reoccur in my new liver. And this is the case with many liver illnesses. Though not through any fault of the patient. But transplant is not always a cure. How far do you want to take it? How do you know which patient has the best chance of surviving for the longest, so making the very best of that donated liver?

Living donation. Is it right for someone to risk their own lives (maybe feeling slightly under pressure to help a family member) to hopefully save someone else’s, as there are no guarantees that either operation would be successful. How would the transplanted person react throughout the rest of their lives knowing that their family member unnecessarily died because of them?

Adults or children first? Children have their whole lives ahead of them maybe. But some adults may have their own children that depend on them heavily, and it would then affect these children.

Conditional donors. This could mean that less organs are available for certain patients as it would be clearly stated as to the kind of group of people they do NOT want their organs to go to.

In the future it may get even more unscrupulous with people using social media to ask complete strangers to donate their organs to them!!! and even maybe for some kind of reward.

Some interesting questions I think. And I could go on. Something maybe a lot of people wouldn’t even begin to think about until it is pointed out to them.

Anyway, enough of that, I have an early start in the morning. Well I think I have :/ Robyn was in a bit of a stress this evening and said she wasn’t going to come and pick me up. Guess I’ll wait and see …

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Great phone

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Friday 22nd to Saturday 23rd January

A good job I was feeling quite well today as I had a busy day to get through. My normal morning at work. Home for something to eat, some washing up. Then back at 6pm for my second shift at work, for stocktaking :/ I did start to feel rather tired through this, but I made it! And that was that day over and done with.

Saturday. I understand that now I have my lovely mini, I am going to be driving Gary everywhere we go at weekends!! so today was a trip to Banbury. I decided to take my phone back into the phone shop and get it sorted, even if that meant me having to be without it while they sent it away, as i was completely fed up with it restarting itself whenever it felt like it! I never knew if anyone had tried to call me, had sent me a text or had replied to my texts, and it was causing problems. The man in the shop looked at my phone and said that I had too many applications running at the same time and that would be what the problem was. He closed them all down for me. I told him I wasn’t convinced about that, but he sent me away saying just to come back if it didn’t work.

So off we went to do some other shopping. 

And then guess what happened? Yep, my phone switched itself off. I just knew it wasn’t going to be that simple. I know people think I’m a bit thick in that department! and probably think the cause is just something that I’ve been doing myself, but I’ve cleared lots of things off my phone over the last couple of months to try and clean it up a bit and see if any of that stopped the problem, and it never. Anyway, back to the shop we go. I tell the man its just happened again, so he does what he has to do and gets it ready to be sent away. They tell me I’ll get a replacement phone until mine is fixed. Oh that won’t be too bad then I think to myself. Then he comes out with this.

Was he kidding me? ๐Ÿ˜‚ I couldn’t quite believe it.

A bit of a blast from the past. Such a tiny screen, which I wanted to keep touching, but it didn’t work like that! And I had to press the buttons either once, twice or three times quickly, depending what letter I wanted!!

Earlier in the week Gary had received his first spice pack through the post, one of his Christmas presents, I think he was looking forward to cooking up a storm  – and I was looking forward to tasting it!

 

When he was describing some of the things he was going to be doing, I was thinking that some of it wasn’t going to be to my taste. I was wrong :/

Kaistang Feng curry (made with pork which was different straight away as we normally always have chicken!) served with coconut rice, Sambal Belacan (which was the only bit I didn’t eat, a little too spicy for me :/ ) Acaa Tumin (basically pickled cucumber served with watercress and rocket, actually really nice) and my absolute favourite Braised Cabbage (but we actually had braised cauliflower! with carrots, cooked in mustard seeds, just dee-licious). What a clever boy he is ๐Ÿค“

I strongly recommend that you cook this for yourself!!!

‘Up north’

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I just wanted to be able to say that a bit of my blog has been written while ‘up north’ in Yorkshire as I have never visited this part of the country before, so here it is ๐Ÿ˜€ 

When I first arrived early this morning there was beautiful blue sky and the sun was shining brightly. But unfortunately before I got the chance to take any pics it changed.

 

Gary’s dad Terry’s childhood home on the left and Gary’s mum Chris’ childhood home on the right.

A trip down memory lane.

ONE MONTH TO GO

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Could you all do me a favour?

I really want my daughter Robyn to have to hold a tarantula!!! ๐Ÿ˜ฑ

For all the details please go to http://bit.ly/DunbarsDonors

Please ask all your family, friends, work colleagues and anyone else you know, to sign up to become an Organ Donor. If it’s easier you can also contact me through my blog.

Thank you.

๐Ÿ•ธ๐Ÿ•ท๐Ÿ•ท๐Ÿ•ท๐Ÿ•ท๐Ÿ•ธ

The Queen Elizabeth Hospital

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Thursday 21st January 

Another hospital visit today. But this time not for me ๐Ÿค— For Robyn and her nosebleeds! So I took her in my mini ๐Ÿš—

 
I drove to Kidlington Park & Ride and we got a bus in from there. Oxford is a real nightmare at the minute, roadworks everywhere. And they tell you to leave an hour to find a parking space in the JR as it is so busy all the time. It was easy on the bus.

So Robyn ended up having her nose cauterised ๐Ÿ˜ฑ She has been suffering with nosebleeds for months, having one most days, some heavier than others. And after the last really bad one when she had to go to the doctors for it, they referred her to Oxford to see a consultant. He told us there was nothing to worry about, their very common and just something you have to put up with really. He had a look up Robyn’s nose and said he would cauterise it to see if that would help. So she had some anaesthetic put up her nose, which apparently would taste really awful, and it did! Then we had to wait about 10 or 15 minutes for it to work and then she could have it done. It was me asking ‘would it hurt’ and dreading it happening. I can’t bear the thought of even the simplest procedure any more. And this even wasn’t going to be happening to me!!!

I was wondering how on earth they would do it and they have a thin wooden stick (just like the ones you get now to stir your coffee with in cafes!) with chemicals on the end which he just put up the nose, moved it about slowly and then held still for a while so it could seal the blood vessels. Robyn said she couldn’t feel a thing, it all looked very gentle anyway.

When we had finished there we got the bus back to the Park & Ride. And on our way home we stopped off and got a nice lunch ๐Ÿฝ

Robyn went off to the gym in the afternoon and I was left trying to catch up a bit with my online course. As the week has been quite busy I have got a bit behind with it :/

Evening walk ๐Ÿ‘ฃ

I have also been listening to Radio 5 Live today as they have been broadcasting live from the Queen Elizabeth Hospital Birmingham. They are doing this for 24 hours from 6am today. It was really quite interesting and a great idea I thought. I heard them talk about two of the domestic staff Pat and Norma and later I saw a picture of them on Twitter being interviewed and I recognised them as being two of the cleaners from up on the liver ward when I was there! They also interviewed people in the Teenage Cancer Young Persons Unit, A&E and spoke to a porter and the Chief Executive, among other things.

My life was saved in the QE. It has been a good place for me to be and also a bad place. I get such mixed feelings about it now every time I go to visit for my clinic appointments. I have absolutely loads of memories from there, happy, sad, funny, scary. I have met some people who I would never have come across in my lifetime if it wasn’t for my time spent there. Special people to me at a crazy time.

Here are a few interesting facts about the hospital for you!

It cost 545 million pound to build. It deals with 1 million patients every year. There are 8,800 members of staff. There are 1,213 inpatient beds and 32 operating theatres.

Every day staff have to clean 127 flights of stairs, 1015 toilets and 3,105 hand basins.

Quite amazing. And here it is.

 

Strange visit

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Monday 18th to Wednesday 20th January

Organised Robyn had already been to the gym and yoga and packed herself a lunch. I threw a Dairylea dunker and an apple in my bag. Then we set off to Birmingham. Clinic today.

It was a bit of a strange visit today. And it wasn’t just me, Robyn said too that my consultant was a bit odd today. Maybe it was because it was at the end of a long busy day, who knows?! Anyway my new liver is doing just fine right now and my kidney results have improved (though still not exactly what they should be). So if my results are still good this time, I can reduce my tacrolimus two weeks before my next clinic appointment, so it doesn’t leave it too long before they can check to see if it’s having any unwanted effect on me.

Luckily for Robyn, we didn’t get stuck in any traffic on the way home either.

Tuesday morning and work again. I told a couple of my regular customers that I was getting a car at last and picking it up later today, as they always ask how I’m getting on or what’s been happening with me!

So after fiddling about sorting out some insurance, it was time to go and pick up MY car ๐Ÿค—

I wasn’t sure at first whether I should drive it back on my own or not as I haven’t driven for over a year. I was thinking of getting Leah to drive us over and then Gary could drive it back. But then I said to myself ‘you’ve got to do it sometime, just get on with it’ and so I did!! And it was fine. I thought that maybe I would be a bit scared, but I honestly wasn’t. The girls came out and had a look at it. They both liked it. Leah was quite surprised saying ‘it’s quite good for you, you don’t normally have anything like this’!! and she was right. I have always had old bangers. Not that this car is new at all, but it’s only had one owner and is in really good condition. 

Wednesday. And I had to go to work again. Yes, from today I’m adding an extra shift into my working week. I will see how I get on. I think it will be fine, I just won’t have as much time to fiddle about at home now :/ 

After work I met Robyn in Caffe Nero for an hour while she was on her lunch break.

I had every intention of getting on with some much needed jobs when I got back but I seemed to get engrossed on my Liver Transplant course and was just sat in the semi dark on my iPad when Robyn came in from work! Where did that time go to? ๐Ÿ˜ณ

Nice new bed

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Friday 15th to Sunday 17th January

A bit of a chaotic morning at work. As soon as I arrived I had to go into a meeting with my boss and some other members of staff, straight from there I had a meeting myself with just my boss, and then finally on to the tills, where by this time my concentration was suffering a little :/ Then at the end of my shift I was trying to sort out some holiday I have owing, my normal holiday and some odd days off. Not as easy as it sounds. All the dates have to be checked to make sure others aren’t off as well.

Robyn made our dinner when she got in from work today. Pasta with chicken and veg. It was really nice ๐Ÿ˜‹

On Saturday lunchtime we set out to McDonalds, Headington, Oxford. We were going to meet Gary’s family for a ‘lunch date’ as it had been his niece Lily’s birthday a couple of days before.

Gary had shown me a car that was for sale on the Internet. So I had rung this morning to arrange a visit as we were already going to be out in the right direction. I have mentioned before that I was now just going to settle for a red car, and this was a red mini. So after everybody went their separate ways, off we went. There were a few little scratches, one of the window switches didn’t work and the airbag light was showing on the dashboard, but the lady said they would get those fixed. I didn’t know whether to buy it or not ๐Ÿค”

When I got back I made an appointment for tomorrow to go and look at another car that we had also seen on the Internet. A red mini again, but this time with a black roof!

Sunday morning and off we went for the viewing of the car. I liked the look of it, Gary gave the car one of his major inspections! which it passed, and then I bought it ๐Ÿ˜ƒ I can pick it up on Tuesday.

I then just spent the afternoon at home getting a few odd jobs done.

Robyn was busy cleaning and sorting up in her bedroom as she had got a new bed and Tom was going to put it together for her later this evening. This was a big event because she has just been sleeping on a mattress on the floor since we moved, as her old bed had been broken a long time ago!

  
Can you see her beloved Barney! I can’t wait to ruffle that up and make it all messy ๐Ÿ˜œ
In the evening I went round to Gary’s so that he could take a back up of all my photos and other things on my phone so that it could be restored to factory settings. I have been having trouble with my phone for months now, it just randomly keeps restarting itself. So that’s what the man in the shop had advised me to do. This took all of the evening as Gary backed it up twice to different places in case one didn’t work! I think I had got the message through that I would not be happy with him and wouldn’t know what to do with myself if I lost my photos, they are so very precious to me, I have over 1000 on my phone!

Job finally done, all photos and other things now put back onto my phone thankfully. Didn’t lose a thing ๐Ÿ˜€ Now to wait and see if all that has worked …

Adele

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Tuesday 12th to Thursday 14th January

Work this morning.

In the evening I started out to do some work on my blog and I got distracted by a programme on the tv. It was Derren Brown and it was called Pushed to the Edge. I don’t know if you have watched any of his programmes before, but he kind of tries to condition people to do strange things that they wouldn’t normally do. This time the end result was to try to get a man to push another man off the roof to his death, but there was a whole story leading up to it during which he was already getting the man to do things that he normally wouldn’t have considered doing. I’m probably not explaining it very well but it was very very interesting. I like things like this. My blog post didn’t get written in the end!

It was also this evening that I first felt like I was getting my shingles type virus back yet again, but this time it was in a different place. The first time that has ever happened before ๐Ÿ˜ฆ

Wednesday. So this day a year ago was when I first went live on the transplant list. That was it. Phones had to be kept charged and were not to be put on silent! Everyone was on standby wherever they were. I think Robyn and Leah hated their phones ringing now, thinking it might be me telling them I had the call. I know I got very nervous when my mobile or the house phone rang ๐Ÿ˜ฎ Life on the edge. Scary times.

And typically for me, my hospital bag was only half packed, but it did sit ready and waiting, next to the front door ๐Ÿ˜ I think Robyn had about 6 bags packed, ready and waiting up in her bedroom, and I don’t think Leah had anything ready!!!

Back to the current day. Spent at home doing jobs and then a bit of time put aside for my course. A few of the videos we have to watch have been taxing my brain rather a lot :/ but I am really enjoying it.

I made a Rustic Chicken casserole type thing for our tea. It was while I was in the kitchen chopping all these vegetables that I realised that this is one of the ways I definitely have improved. There was no way I would have been able to do this a year ago without my hands getting such very painful cramp in them, and continuing to hurt afterwards.

I can now chop veg again ๐Ÿ™‚ Simple things that other people take for granted.

I have got a weird obsession with the new Adele cd at the moment. I always used to put Radio 1 on to listen to while I’m down in the kitchen cooking, washing up etc but since Christmas when Leah bought me the cd, I now play this. Every day and normally more than once. And loud. I am trying to learn the words to the songs (another way to get my brain working I’m thinking) Leah and Jack’s bedroom is next door to the kitchen so they have to put up with it too, as its normally playing when they just get in from work. The trouble is one of the songs makes me cry, so now when she hears it coming on, out comes Leah and starts to sing really loudly over it so I can’t hear it properly! Weirdly it seems to work!!!

On Thursday I went out with Robyn for a while. I’m not allowed to explain on here but funny times :/ ๐Ÿ˜‚

I spoke to a doctor today as my shingles type virus thing was really hurting. And as it was now at the bottom of my bum it really hurt when I sat down and my clothing rubbed it too. She didn’t want to see me to check it out, I guess she just took my word for it and offered me some special cream or tablets. I try to avoid all tablets, so I opted for the cream. I have only just suffered with this in its normal place just before Christmas, and now a few weeks later, it is back but somewhere else. I had hoped that this problem would also disappear after transplant, but obviously this is not the case ๐Ÿ˜  A horrible thing to keep having to put up with.

I still went out later for my walk with the others though. It hurt me a bit and it was also absolutely freezing cold weather but it does me good ๐Ÿ‘ฃ

A shouting Robyn

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Monday 11th January

Robyn had to go on a course in London today with the rest of the girls from the hairdressing salon. So I was facing a Monday on my own!! 

I have joined an online course to learn about liver transplantation! and it started today. It only lasts for three weeks but I have never done anything like this before so I thought it was a good way to start. And obviously that subject interests me!!

I have now decided that I am going to try to get my brain working again this year. I don’t think it’s going to be a very easy task though ๐Ÿ˜

So I sat for a while and had a read through and made a start on my course, then I had to make myself get back up and do a few jobs or I would have been there all morning. In the afternoon I decided that I would take myself to Caffe Nero as I would normally be out shopping or somewhere with Robyn anyway. I managed to get a window seat today so I just sat looking out, people watching and thinking ๐Ÿค”

Back to the real world, more things to be done.

When Robyn got back she hadn’t had a good day. It sounded a bit to me like one of the topics was to try to inspire them all to have more positive thoughts everyday and to use these in the workplace. She said she felt like she had been in an all day counselling session. She gave me lots of very funny demonstrations. She was shouting so loud and she said that’s what he had been doing all today. It reminded me of some big American preacher man!! I hope she goes into work tomorrow and tells all her clients that she sees their hair ‘like a photo frame which compliments their beautiful face’!!!  ๐Ÿ˜Š

As if that wasn’t bad enough, she then goes down to the the kitchen to make herself some food. Leah has just finished cooking herself something to eat so the rings on the hob are still very hot. As they are electric they do not show this. Robyn puts her plastic bowl down on the ring while getting something else, and yes, there’s a sudden smell of burning ๐Ÿ”ฅ The bottom of the bowl is melting and STUCK!!! So Leah comes out of her bedroom to join in the ‘fun’!

Been loud and chaotic in our house this evening.

But I think Robyn was very pleased to get to bed!

Nice car

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Friday 8th to Sunday 10th January

Friday was just a day made up of work and being at home :/

I have recently read an article about a family that only has four kidneys between them. Years ago the mother had kidney failure and her only hope was a transplant. So her husband was tested and against the odds, as he wasn’t a blood relative, he was a perfect match. The operations went well and they are still both healthy today. Then the son some years later was diagnosed with kidney disease (not related to his mum’s illness) and knew that he would eventually need a transplant too. Family members volunteered and were tested and his sister was found to be a match. So the transplant has just gone ahead and again was successful. Both have now recovered. What a great story ๐Ÿ™‚

On Saturday I set out to go for a drive somewhere with Gary and it turned into a trip around local garage forecourts to have a look at what cars were up for sale. 

I have been looking every now and again over the last few months. I’m not one of those people that are impressed by cars, as long as they work I’m happy. But I have taken a fancy to the little Fiat 500. The trouble is they are quite expensive. I don’t have parking outside my house, you just have to try and find a space on little side roads which is normally a real difficult task, and I would be devastated if I spent a lot of money and then my new little car was tampered with or crashed into :/ So I had decided that it’s probably best to ignore my dream for now (maybe one day …) and that after Christmas I would just get anything, but I’d quite like it to be red!

I was just going to buy one that we saw in Kidlington as it had my initials on the number plate again and it didn’t look too bad, but Gary wouldn’t let me, he said I could find a better one than that!!

So I must keep looking.  As for the Fiat 500? For now I will try to be content with my little present that Gary bought me for Christmas ๐Ÿ˜

 

Later I found out it was going to be the first curry Saturday of 2016. Yay!

 

Sweet potato, cauliflower, mushroom and chicken curry. Chick peas. And my absolute favourite – green beans with mustard seeds. Just dee-licious ๐Ÿ˜‹

On Sunday I had to wait in for the Sky engineer to call, as on Tuesday the tv and Sky had all decided not to work! So I had to make that dreaded phone call and go through all that performance of unplugging everything and checking all the leads which I had already done myself twice before I even picked up the phone, to see if I could fix the problem. In my house this means squabbling about under the table and then trying to move the heavy pine cabinet out so I can get round the back and reach everything! Then I had to ‘press this button’ ‘try this’ but nothing got it to work, so an engineer needed to come out.

He eventually turned up, didn’t know what the problem was, went back out to his van to get some equipment to run some tests and also brought a new lead in with him to try. And that’s what it turned out to be! When he took it out from the back of the tv the metal bit on the end was really bent and he said the connections had probably been pulled out!

So now we have tv to watch once again ๐Ÿ“บ

Then me and Robyn carried 3 big heavy bags with our Christmas tree, decorations, left over rolls of wrapping paper etc back along the road to my sister’s house, where she keeps it up in her loft for me. A funny sight for anyone else to see, us two struggling along but laughing as we went ๐Ÿ˜ฌ

Another weekend soon over.