Saturday 27th February

A day for celebrating. 

I was extremely lucky enough to be found a second donor liver a year ago today, which has let me have some great times with my family again.

So as it was my first year anniversary it meant that it was time for Robyn to complete her challenge today. After my transplants Robyn had decided that she wanted to raise awareness of organ donation and try and inspire as many people as she could to sign up to become an organ donor. So she set herself some challenges and depending how many people she got determined which challenge she had to do. Click on http://bit.ly/DunbarsDonors where you can see the list of challenges and it also shows you there what she has been doing during the year.

Robyn got 48 extra people signed up to donate their organs. How great is that? 😀 So this meant she had to play on her boyfriend Tom’s drums in front of an audience today. We had also decided that we would make a bit of an afternoon of it and have another stall and do some more fund raising at the same time while we had the opportunity. And this was all going to take place at the bottom of the supermarket where I work.

We had asked people to make cakes for us to sell and we had a couple of other small games for people to do. We also did guess the name of the chick with the prize being the cuddly chick AND a big Thorntons Easter egg (this competition is still running until Easter!)

At 3.30 it was time for Robyn’s challenge to take place. We had quite a crowd gathered to watch. Poor Robyn, she was scared 😱 Doing something with lots of people watching is not what she enjoys, and having to do something that you’ve never done before makes it all the more difficult

But she did so well 👏

Later it was a quick trip home to get ready for the evening. We were going out for a family meal to Frankie & Benny’s in Witney. There were 22 of us so it was a bit chaotic with that many people but I think everyone had nice food and a good time. Robyn had also organised with my niece that she would make a cake for me too.

 
Good isn’t it?
A fun and successful day and evening to celebrate my first year with my donor liver 😀

Thursday 25th to Friday 26th February

A day of jobs and banana cake making!

In the evening instead of going for our normal walk this week we were going out for a meal as it had been my birthday 🙂 So Kate, Sue, Doreen (and her sister Sandra joined us too) and me went off to a local pub. I had the vegetarian chilli and the others had steak. All of us had really good food, it was nice.

It was around this time last year that Robyn, Leah, Gary, Julie and Hannah spent most of their time camping out at the Queen Elizabeth Hospital, while anxiously waiting to see if a new liver was going to be found for me.

I know it was a terrible tough time for them all but in a very weird way it seems like they had a bit of a jolly time too This is how they all kept each other going I imagine. I’m a bit sad I missed out on it all really, but I was busy ‘sleeping’ in another part of the hospital 🙃

Their days started very early with trips to the coffee vending machine then off to the restaurant when it opened in time for the cooked breakfast for some. Leah always had coffee (which she didn’t like!) and cake at some point. Robyn had her own food always ready prepared and her bottles full of water. They always sat on the same group of chairs in the same spot by the window and some did colouring and puzzle books to fill in their time until the next meal! and taking it in turns to visit me, as only 2 were allowed at a time. And then different members of my family also came up to see me from time to time and I think they also ended up back in the restaurant catching up with all the others.

 
Oh dear, strange difficult times. And all for me 😏 I am very lucky I know and I am extremely grateful for all that they did and glad that they were all together to support each other.

It’s weird when I look back, but I don’t think I had really seriously given anything a thought about what would happen after the operation and if things went wrong. Maybe that was a good thing in my case. I think my family coped with it in just the way I would have expected them to. Brilliantly.

And now, this Friday was a busy day. 

I went off to work as normal. It was non stop. Everyone must have been very hungry buying all that food. And apparently I served an actor off the TV who was in shopping with his mum, but I had no idea!! My colleague Geordie came over after he had gone and told me. He used to be in Casualty or Holby City he said!

Then when I got back in the afternoon I had to fit some more cake making in alongside my normal Friday afternoon jobs! When Leah got in from work she started to make one of her famous Slimming World cakes too, so it was quite chaotic in the kitchen (just so you know! all this cake making is in preparation for our charity day tomorrow). Of course that meant there was mountains of washing up to be done.

Later there was also all the tasks of making sure we had everything we needed for tomorrow and getting it altogether with Robyn, loading the boxes ready to be put in the car in the morning etc etc. Oh and getting Jack to blow up all the balloons 🎈🎈🎈

Monday 22nd to Wednesday 24th February

This Monday Robyn was busy exercising and out with her friends so I was just at home for a while and then later decided to take myself to Caffe Nero (my mind was still away somewhere on other things so it was nice to get out). I got a window seat this time and was sat watching this couple with another lady unload their car with children. First, two toddlers that were dressed the same, in these big fluffy white coats (they looked to me like snowballs!) and then out came another two babies in their car seats, also dressed the same!! They came into the cafe. The lady asked if they could all sit with me as there were not any other free seats and of course I agreed. They were two sets of twins, 2 boys and 2 girls (yes they had dressed the boys in these coats too 😐 ) very close in age, but the other lady was like their nanny I guess, I’m sure they needed as much help as they could get! In the end someone else left the cafe so they didn’t need to sit with me, they sat across from me instead, which was a shame 😦 I was looking forward to it and I was going to ask if I could take a picture of them all for my blog so you could see them too as they all looked so cute. So sorry, maybe another time! They kept me entertained for a while though 🙂

On a completely different note through Transplant Australia’s Twitter feed I had seen this article in the Sydney Morning Herald about the ‘paired exchange program’ which I found very interesting. This ‘largest exchange of organs in Australian medical history’ was made possible all because a man decided to do an amazing thing and donate one of his kidneys to his friend. His friend in the end ended up getting a kidney from the normal donor register, so his wasn’t wanted. But he didn’t want to waste the effort he had gone to in getting fit for the operation, so he very kindly told the doctor he was willing to go ahead and donate it to anyone else that was waiting. And this led to a whole chain of events.

Have a read by clicking on this Fascinating story I’m glad it wasn’t me that was in charge of organising all of those operations to go smoothly 🤓

On Tuesday in my diary there was a note to myself to reduce my tacrolimus. When I saw my consultant last time he said I could do this 2 weeks before my next appointment, so that it wasn’t too late before my bloods were checked in case I started to reject as a result …

It was a bit of a job for me to get to work this morning. I hadn’t slept very well at all. I had a bit of a sore throat and didn’t feel quite 100% I had to concentrate hard! I think a cold was maybe on its way and because I had to make a final decision about how many hours I was going to work, I knew that this was making me stressed too. Also the whole ‘year ago’ thing and the fact that I was dying this time last year (I was especially thinking about what my kids would have been going through) was playing on my mind. I did make it to the end of my shift somehow though.

Then in the afternoon I had an appointment with Dr Collier in the JR. I decided I was going to go Park & Ride so off I went. But obviously not in time as I missed the bus! Another bus that turned up had problems with the brakes so that was not in service anymore! Eventually I did get on a bus. I was late but I had arrived! I was not going for a medical appointment but to discuss things to see if I would be able to volunteer on the liver ward there and talk to the patients who are suffering with their own liver illnesses. She thought this was a brilliant idea, they don’t offer this service at the moment, so I am now waiting to go through all the checks and everything to get cleared to do this. I hope I pass …

I treated myself to a coffee in the cafe there so I could do some blogging in the JR 😃 before catching my bus back.

When I got home Leah said she had been thinking about coming home from work early as she wasn’t feeling well and just wanted to go to bed. She was a hero though and soldiered on!! And it turns out that Robyn wasn’t feeling that great either. Seems we had all got some little kind of bug 🤒

Robyn had asked me the other day when my next clinic appointment was so she could write it in her diary (Miss Organised 😉) as she normally takes me because she has Mondays off. So I thought I had better look to keep her quiet, and the letter said 21st March. WHAT!!! That means it’s still a month away, and I’m not allowed to go more than 2 weeks on my reduced anti rejection medication. Whoops!! Looks like I got it wrong again So I had to phone my consultant’s secretary in Birmingham, tell her the problem and wait for her to ask Prof Neuberger what I should do now and get back to me.

At 9pm it was time for my sleepover with Robyn. We haven’t had one for a long time and I was finally going to get the opportunity to sleep in her new bed! 

And look what was waiting for me when I got up there!

Robyn does spoil me 🤗

Back to work again Wednesday morning. The afternoon was spent at home.

Oh – and I heard back from Maria my consultant’s secretary, to say that I could either put my tacrolimus back up for now and reduce it back down again at the correct time! or I needed to bring my appointment forward as it really couldn’t be left for more than two weeks before my blood was checked. Thank goodness that I then also realised that the original appointment needed to be changed anyway as we are already booked in at a day spa! So tac reduced, appointment changed (though I can’t now see Prof Neuberger! as he’s on holiday that week). Never mind it might be fun to see someone different. We’ll see. What a performance it all is 🙄

Saturday 20th to Sunday 21st February

In the evening of this Saturday a year ago I got my phone call. I was in the car. A weird feeling!

And this year, very strange feelings. I hadn’t given it a thought really as to how I would feel for my first year anniversary, but I don’t think I expected it to be like this! 

I felt very upset actually. I couldn’t really concentrate or had the incentive to do anything. And I think because I knew Robyn was struggling today too, it made me feel a bit worse. And because my head wasn’t working I didn’t know how I could help her and that made me feel even worse. Vicious circle! I’m really sorry for being so useless, horrible and no help to you today Robyn 😰

As a result of the above I didn’t do much! while Gary fitted the new stereo that he had bought me for my birthday into my car. It looks great. You can change the colour on the display and you can have flashing disco lights to the music! I love it 😀

I was also lucky enough to get another fantastic birthday present for my car from my sister Julie, which Gary also fitted for me.

I had hinted that I would love a personalised number plate now, knowing full well I would never get one as they are way too expensive 💷 But she did get me this.

 
And I love it just as much 😍

I popped back home to find that my neighbour had got the garden fence fixed today but the path was left absolutely covered in thick mud (I think they had come round and fitted it from my side!) Not the best thing to be left with when you have a dog that’s obviously in and out of the garden. I think it’s fair to say there were rather a lot of thick muddy footprints 🐾🐾 all over the kitchen floor!

Sunday was spent not doing too much either!

I just kept thinking about the poor family somewhere who was going through the first anniversary of losing their 19 year old female family member. How tough must that be?