Monthly Archives: February 2016

Marina

Standard

Friday 19th February

So after a lovely day yesterday for my birthday, today was a very sad day. It was my hospital friend Marina’s funeral. Robyn had taken the day off to come with me πŸ˜™ but I was doing the driving for a change πŸš—  AND going on the motorway!!!

I did get very upset 😰 I couldn’t bear it. It was bringing back too many difficult memories for me. I’m not a religious person but I did think this particular vicar was very good in how he went about the whole service, some of the things he said really made you think and the way he spoke about Marina was, I felt, sincere.

I won’t EVER forget Marina. We went through a special, difficult, painful, emotional, unexplainable to others, time together (I don’t have anyone to share this with now and that does upset me). She helped me a GREAT deal.

When all I was able to do was lay around on my hospital bed a lot, I used to just be able to relax a bit and watch her sorting out her many bags which she used to do every morning (she was a bit of a hoarder!) and she would normally end up giving me some ginger biscuits or a couple of 2 finger Kit Kats! She loved to colour and I used to watch her sharpening her pencils. And she used to say ‘I’ll be over in a minute’ and she would come and sit by the bed and have a chat. She would do this to the other two patients on the ward too. We used to mess around a little bit during the times we were feeling a bit brighter. She was funny, she made me laugh with some of the things she said and did 😊 

It may sound odd to you all as I didn’t know her for very long but I WILL miss her.

I really don’t know why it is that I am doing so well at the minute and my new friends I have made through my journey haven’t made it through, and I do get extremely upset about this and feel very guilty. I am also extremely grateful and do realise how lucky I have been so far.

I did read about another good news story this week – ‘Partner gives gift of life to fiancΓ© by donating half his liver’ Read their story here The Perfect Match I really do hope everything keeps going well for them both πŸ˜€

Advertisements

Amazing cake

Standard

Thursday 18th February

What a lovely start to my birthday.

 

Everyone had booked the day off work so we were all able to go for my birthday day out πŸ™‚
We all squashed into Robyn’s car and went to Witney. We were doing exactly the same thing as we did last year for my birthday! My choice! First we went to a nice cafe there for morning coffee and a cake. I picked a lardy cake which was served warm and it was VERY tasty.

Then we went across to The Arty Crafty Place to do decoupage. This is basically where you cover almost anything you choose in torn pretty pieces of paper and glue!! I had bought an owl kit last year and I didn’t get it finished (one of the reasons why I wanted to go back!) so I got on and finished that. Maybe you think it all sounds a bit silly but once you get started I think it is quite addictive. We all took our lunch and had a little indoor picnic while we were sticking! Robyn had even brought along a bottle of ready made Bucks Fizz. That was nice 🍾

Back to Julie and Hannah’s for birthday cake. And WHAT a birthday cake I was lucky enough to have made for me.

 

I can tell you it definitely did taste as good as it looks.

Then more present opening time πŸ˜ƒπŸŽ

In the evening I went out for a drink with Robyn, her friend Lucie and Gary. I ended the day as nicely as it had started. I was treated to just the one cocktail!

  

A really nice birthday. Thank you everyone.

Memorial feature

Standard

Monday 15th to Wednesday 17th February

After a busy weekend I had to go to work this morning. I need Friday off so I swapped to work today instead.

Me and Leah had a bit of a feast for our tea tonight.


It was very tasty! πŸ™‚

Tuesday = work again.

In the evening I went out for a birthday meal with some of the girls from Co-op. We always get together for each other’s birthdays and this time it was going to be for mine!!! We had some nice food and I was lucky enough to be given some lovely presents 🎁

When I first got up on Wednesday morning I was sat drinking my cup of tea and Robyn was eating her breakfast while looking at her phone as usual and she suddenly comes out with ‘it’s World Cabbage Day today!’ A useful bit of information to take to work with me this morning! So I found out a bit of useless information too – the Old English name for February was ‘Sprout-Kale’ or ‘Sprouting Cabbage Month’ as cabbage often begins to sprout in the garden at this time of year! So my birthday is on the 18th of Sprouting Cabbage Month πŸ˜ƒ

A much more important piece of information is that a new memorial feature was installed at the Countess of Chester Hospital this week to support organ donation.

       

 Love it 😍

After work I had a busy afternoon getting things done as I had to be along at Robyn’s salon for 5.30 as she was doing my hair πŸ’‡ Ooh that meant I would also get a bit of a head massage πŸ’† lucky me!

Celebrations

Standard

Saturday 13th to Sunday 14th February

A big Happy Birthday to my brother Peter πŸŽ‰

Today was going to be a cooking day as I had decided to make my sister a birthday cake as it is her birthday too tomorrow!! It was to be the first time I had made a sponge cake in the fan oven I have here so I was a bit dubious as to how it was going to turn out. And it turned out I was right to be, because I am so fussy it came out a bit overcooked for my liking :/ I had also decided to try and make some flapjack for Gary for Valentines Day! Well, it looked to me like it was just all liquid boiling in the tin when I looked in the oven, so I left it in there to cook for a bit longer. So then I also decided that I was going to make yet another sponge cake to see if it turned out any better. My hands were aching from all this mixing!! Back to the flapjack, I said to Leah ‘I’m just going to have to take it out now and see what happens’ So I left it on the table to cool down. Back to the second cake, almost perfect this time πŸ™‚ thank goodness (or Julie would have had to have gone without a cake, I wasn’t going to mix any more :/ ) As for the flapjack, it set like concrete! I realise now that I should have taken it out of the oven much sooner and let it just set a bit more itself. Leah and Jack said I had got the taste bit right as it was nice, I just needed to sort out the cooking side of it!!! Cheeky things 😀

In amongst the chaos of me doing all this unsuccessful baking was Leah, who had decided she was going to make a Slimming World cake that you could do in a mug in the microwave. Of course she WAS successful and it probably only took a couple of minutes from start to finish! Maybe I should have done all my cooking that way too πŸ€”

Enter Robyn. Just going off to the gym.

 

The things I have to put up with πŸ˜‚

Sunday morning. Happy Birthday Julie.

And happy Valentines Day of course πŸ’ž πŸ’– πŸ’

Well I gave Gary the concrete flapjack 😏 and I was lucky enough to get from him some lovely flowers and chocolates πŸ˜— I was also lucky enough to find some more chocolates in my bag from a secret admirer (whose name I do think begins with an R!) Then after all that early morning excitement it was cake decorating time.

  
  
And this is what happened when 3 twenty somethings were in charge πŸ˜‚

We went out for Sunday lunch for Julie’s birthday (I was in charge of the driving again πŸš—) I had a lovely roast pork meal πŸ˜‹ Then we went back to Julie’s for a cup of tea and the lovely birthday cake and of course, present opening!!

Today was also National Organ Donor day.

Give the gift of life this #Valentines and #ShareTheLove

We can’t ‘liver’ without you

But don’t worry if you think you’ve missed a chance, it’s still not too late. If you haven’t already, why not click on http://www.organdonation.nhs.uk now and sign up today to donate your organs.

Rock cake

Standard

Stupid I know, but I haven’t even given it one thought about how I would feel about the first anniversary of my transplants. 

But boy has it hit me today. I’ve been thinking about it all day, what I was doing on this Saturday a year ago. I went to look at cars with Gary and Emma but I had to wait for them in the car because I was feeling very ill, we went to visit Gary’s mum and dad and I had a homemade rock cake and in the car on the way home from Charlbury I got a phone call …

I was admitted in to room 13 of the Queen Elizabeth Hospital Birmingham. Robyn, Leah and Gary were with me, not having a clue about what we were all in for over the next couple of months πŸ™ƒ and probably at about this time we were starting to think that we should try and get some sleep.

So I’ve not really felt like doing anything today or been able to concentrate on too much. And I’ve been crying quite a lot at different times throughout the day. But why am I? I’m okay. I’m alive. There’s a family out there somewhere who lost a daughter a year ago today. Maybe a sister, niece, granddaughter. And in amongst all the pain and heartbreak they were suffering, they decided to let her liver be transplanted into someone else. I’ve been thinking about whoever they may be today and the horrendously difficult time their going through.

At around 4am I was taken to theatre.

Im going to leave it there. My head is hurting. 😒

Feeling better

Standard

Friday 12th February

Work today. I was very tired and aching from my busy day yesterday, but up I got and off I went. 

I really don’t know if I am pushing myself enough at times with the things I now do, or not. Some people say to me ‘you still need to be careful’, ‘are you sure you should be doing that’ and even ‘are you sure you should be back at work’ and then I know there are others thinking why isn’t she working more hours and doing more things yet? I do think about this quite a lot and I get confused and frustrated because I don’t really know which advice I should be taking :/ There’s also the financial side of things that I have to consider too of course. It does all stress me out πŸ€”

What I do know is that I wasn’t able to do any of these things that I am doing now this time last year. I think this photo is a perfect example of EXACTLY how I was feeling back then.

 

My life was very tough. I know that it does sound stupid to others, but it really did take all my effort to get out of bed in the mornings. Then whatever tiny thing I managed to get myself to do throughout the day was hard work and  just exhausted me. 

I felt ill! And now knowing what my liver looked like inside of me at this time, I guess it’s not surprising. It was black and scarred. It just couldn’t take any more of what my own immune system had been throwing at it for many many years. It had given it a good shot I guess.

I was also suffering badly with brain fog. I used to just look at people vacantly when they asked me something, obviously trying to process what they had said, and then eventually I would give them an answer. And then the things I did manage to say came out as complete rubbish 😞

I know my family will say that this part of me hasn’t changed a bit!!!

  
And now? I am feeling so much better which means I can do things again. I haven’t had a cold for a few weeks now, no Shingles type virus or anything to drag me back down. I still get so very tired and my body’s always aching, if not all over then in one place or another. My head and everything that’s gone on in there mentally is still very far from being recovered, but generally I think I can dare to say (although I am a bit scared to say) that I feel well ??? …

Bent mop

Standard

Tuesday 9th to Thursday 11th February

Work this morning.

I met my friend Jackie when I finished work and we went to Caffe Nero for a cuppa and a catch up.

And then pancake time. Leah was making Slimming World’s version of pancakes this year so that she was still able to join in and have some. Well, it was my job to try her first attempt. Unfortunately for me I didn’t like it. She made another one for herself and she liked it! She even had another! Robyn didn’t want any to eat but wanted to join in with the tossing of them. We always have to be careful because Jake is always right by our feet ready and waiting for a pancake to be dropped. He didn’t get any this year, and nor in fact did I!!!

A crazy Wednesday morning at work. I don’t know if it was just me, but it seemed even more chaotic and noisier than it normally is. At times I had to work hard at keeping my concentration going!! I do get distracted easily, enjoying looking at everything else that is going on around me. I got to have a crafty cuddle of a tiny baby, belonging to one of the girls that used to work in the shop. He was SO cute. Loved it.

Thursday was a busy day for me. I had decided that I was going to wash my kitchen floor, which in my case means moving stuff out of the room (so up and down the stairs many times finding other places to put it for now) and sweeping up all of Jake’s dog hairs, before I can even start to mop it. And then I realised I was going to have to get down on my hands and needs and use a sponge as Robyn had previously fallen down the stairs and landed in the mop bucket, bending the mop and breaking the wringer bit!!! So it was going to be an even longer and more back breaking job 😧 Then when it was dry I was up and down the stairs again collecting and putting everything back again. I was also breaking off every now and again to put the washing machine on many times and then hanging it all outside when ready, as it was a nice day.

Then later in the afternoon I had some errands to run and a couple of shops to visit in town. Of course I had to treat myself to a quick visit to Caffe Nero while I was out. Well, I had been working very hard! 

Back to load the dishwasher and finish a few odd jobs. And then it was walk time! It was a good, enjoyable walk but it was so cold. I am suffering with Raynauds quite badly at the moment when it’s cold. Tonight my fingers were frozen. So when I got back I was sat giving them a good rub and massage trying to get the blood flowing again, and eventually as they were warming up I could literally see the blood slowly moving back into my fingers, changing them from white back into pink. I’ve never actually seen that happen before, it was a little bit creepy :/

Tired and aching, time for bed!!

SpoonsΒ 

Standard

Monday 8th February

Well – I woke up to this.

 

And it seems like Jake thought he should go and have a look and see what havoc Storm Imogen had caused in his garden πŸ˜„

I spent today at home doing lots of different jobs including spending more time on my Abdomen course!

I just happened to be watching a bit of a programme on the tv in the afternoon where a man was visiting the British Ironworks Centre in Oswestry, and they showed this.

 40,000 spoons have been used!

If you would like to read how the idea for the gorilla came about then click on the link – Spoon gorilla He’s going on tour too!!!

Anyway, the point of me telling you about the above is because it immediately reminded me of something that I have seen some people with PBC referring to, on the many groups on social media that I have joined. They mention that they ‘have ran out of spoons for today’ or that they ‘need more spoons’. I have often wondered what it was all about and so I decided to find out where it all came from.

A lady called Christine Miserandino has written this The spoon theory

It is definitely worth a read. I do think it is quite a good way of explaining things to other people who don’t have the struggle of living with a difficult illness every day.

It is also explained in Wikipedia

So to all of you people who are struggling out there every day, just a silly thought, this is where some of your spoons might have gone to!!! 😏