Monthly Archives: March 2016

MK Dons v Brighton

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Saturday 19th to Sunday 20th March

Gary had suggested going to Milton Keynes today for something different to do so off we went. We went into the retail park there first to find something to eat. We very soon discovered there was going to be a football match there today as it is all right next to the stadium. I think we had luckily just timed it right to get a car parking space and to find an empty table to get some food! 

We went in to TFI Fridays. I had some great food.

 
Chicken, bacon, cheese, rocket and tomato in ciabatta with some tasty fries. The restaurant and bar very quickly filled up with the away football fans arriving in their coaches, wanting some refreshment before the match started. They were from Brighton. You can see some of them in their blue and white football kit. Every now and then they would start shouting ‘seagulls, seagulls’ which is their football team’s nickname. Quite an amazing atmosphere. The security guards were out in force!

When we went outside there were people everywhere. We walked around the outside of the stadium and on our way back round we came across a crowd that were waiting to see their team arriving, they cheered as each player got off the coach.

I found it all quite fascinating and it was helping to lift me out of my weird mood. I have never been to a football match before. Gary is a football fan so it is on the TV quite often when I’m at his house and I do really quite enjoy watching it. 

We then went to have a look around IKEA and a big Asda store, which again are right next door. We could still hear the cheering and chanting. When we left the shops the football had almost finished so we sat in the car and waited for them all to start pouring out. The police were there on horseback. It was funny to watch, a few people at a time started to come out first and they were all literally running to their cars (obviously they had all been before and knew what was coming!), and then all the crowds came. Coaches and cars everywhere, all trying to leave the car park at the same time. Long queues πŸš—πŸš™πŸšŒπŸš•πŸš

And the result – MK Dons 1  Brighton 2 

I know a lot of you will find this weird but I had enjoyed today!

Sunday wasn’t as exciting. A day spent both at Gary’s and at my house catching up with a few things.

 
This funny photo came up on one of the girls’ phones on their Facebook Timehop. It was a day when they were all coming up together to visit me in hospital last year. They certainly kept me going with their visits and gave me things to look forward to. I used to get hand, feet and leg massages. They used to bring me lots of different food, drink, sweets and fruit to try and tempt me into eating things. They played me music. They told me if anything was happening back in Chippy. I know I was extremely lucky to have all the great support that everyone gave to me.
I am so proud of what Robyn and Leah did while I was away from them in hospital for so long. Apart from all the worry they had to cope with about me, they also had the house to look after. The shopping, trying to arrange and prepare their meals, the washing up etc, organising to pay the rent and if any bills had come in the post, their own washing and of course mine, they still went to work and also had to arrange any days off of work they were allowed so that they could visit and if neither of them could make it they always arranged a different visitor for me. And from where we live it’s not just a quick trip to Birmingham, sometimes just one way would take 2 hours if the traffic was bad. They knew everything that was going on with me, always asking the doctors and nurses for the latest information and could read the various machines I was hooked up to so they knew what it all meant. They put up with me, which was probably the hardest part of it all, when i was in my ‘crazy’ phase, they told me off, they told me what I needed to do, they encouraged me to do things. I don’t think I would have made it through if it wasn’t for them.

I know I am extremely lucky to have two such extremely brave and very clever daughters. 

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Pesto pasta πŸ˜‹

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Thursday 17th to Friday 18th March

Happy St Patrick’s Day.

Robyn had gone off to Cheltenham Races with two of her friends today. During the morning she text me and asked if I wanted to put a bet on. I thought why not, the girls might bring me a bit of luck, so I googled all the races and chose Kilcoolley which was running in the 3.30 race. The reason I picked this horse was because I noticed it was trained by Charlie Lonsdon and he has his racing stables just outside our town. It didn’t bring me any luck though, I didn’t win ☹️

I still didn’t feel quite 100% at first today and I felt a bit wobbly too. I think I felt a little better as the day went on. At least it was my day off today. I still made myself get on with some jobs though and for some strange reason I then decided to take the cushions off the sofas and give it all a good hoovering!!!

Thank goodness I had previously arranged to meet my friend Jackie in Caffe Nero. That would be a nice break for me. So I walked along the town and met her from work. We had a good catch up.

All of this was followed by the usual Thursday evening walk around the town.

Friday morning and I went off to work as normal. I am feeling in such a weird mood at the minute. Quite a lot of things seem to be annoying me that I normally wouldn’t bother about too much. So many different things were going round and round in my head. I was feeling quite fed up with everything 😨

Robyn had said earlier in the day that she was going to cook pasta for her dinner and did I want some too, but on a Friday she goes out for a drink with the girls from work so she’s late back. I didn’t want to wait that long and more importantly I didn’t want all the washing up to do at 10 o’clock at night, especially with the strange mood I was in today, so I decided to cook the pasta. But as always happens in our house Robyn wanted a tomato based sauce and I wanted pesto. So I did both!! I decided to treat myself to see if it got rid of any of my stress.

 

Chicken, mushroom, pine nuts and pesto. So delicious πŸ˜‹ I even ate the whole plateful.

Peaceful garden

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Monday 14th to Wednesday 16th March

It was going to be another reasonably warm sunny day. 

After Robyn had got back from her Monday morning gym and yoga sessions we set off to catch the Park & Ride bus to Oxford. I needed to take my id into a lady in the John Radcliffe hospital for my volunteering checks which are all going through at the minute, so as we were both off we had decided today was a good day.

We took our little picnic snacks with us hoping we would be able to find somewhere nice to eat. And look how lucky we were.

 

A beautiful little garden within the hospital itself. I never knew this existed there. It was so lovely. We found a bench in the sun and sat there for quite a while, Robyn doing her writing while I was watching the ducks, taking photographs and watching the occasional person walking through the garden. At one point there was a lady that was quite clearly in labour, walking about with her partner. I found this garden quite calming, and I did think to myself what a complete contrast it was compared to all the things that would be happening in the buildings around it. All the hustle and bustle of the general hospital wards, baby’s crying as they’ve literally just been born and the awful beeps of the machines helping to keep some people alive in critical care. Such different worlds πŸ€”          A strange world. So many people’s lives would be changing forever in many different ways inside the John Radcliffe that day and I was lucky enough to just be sat outside in the warm sunshine in that peaceful garden.

Back inside the hospital we went to find the correct office so that my paperwork could be sorted out and then we caught the bus back. An unusual day trip out, but quite a nice one!

Tuesday and Wednesday were just spent at work and then at home. On Wednesday I really didn’t feel too well, I felt sick and not like I should have been at work at all but I stuck it out. I was very glad when my shift came to an end that day though.

Another Barney

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Saturday 12th to Sunday 13th March

This morning I read about Cavity Sam who was going to be making an appearance at Meadowhall Shopping Centre today.

  

Doesn’t that look fun? Our family used to have the game of Operation and I used to love playing it when I was a child. I wish I was a bit closer to that shopping centre today, I definitely would have gone along to have a go.
When you read this Operation Donation you will see it says that they are touring around other shopping centres too to help raise awareness of organ donation. So keep a lookout in case they are coming to a shopping centre close to you, I know I will be πŸ˜‰

It was a lovely sunny afternoon so when Robyn finished work we went out for a walk. We went down to The Common which is where our local play area is, then through to Pool Meadow, where there’s a lovely little stream, then we walked round the back of the church and across the fields, came out along the Over Norton Road and back through the town. On our way back we saw this little dog which seemed to be taking itself for a walk, so I knocked on a few doors asking if it belonged to anyone, but didn’t have any luck. Just as we were wondering what to do as we needed to go home, along came a lady calling for her dog! He was called Barney and apparently he had run off while her husband was walking him!

We had quite a walk. But it was great. I can so clearly remember during my recovery just last year when the weather was lovely, that I so desperately just wanted to be able to go for a walk but there was no way I was able to. My family took me out in a wheelchair for a good while until I had built all my strength back up. And now, I can make it across the fields again. This makes me happy. We do all take these very simple basic things for granted and we shouldn’t, as when you lose them you realise just how lucky you really are.

On Sunday morning I walked to Caffe Nero in the town and met my two big sisters for a coffee. I took my own banana with me and then bought a pain aux raisin from there. A nice yummy breakfast for me πŸ˜‹ to go with all the silly chatter. Lynda has been away playing golf in Spain for most of January and February it seems, so it was nice to actually see her for once. She even looked after a little dog for someone for a week while they were out there. For anyone that doesn’t know my sister, animals and her do not really match, so this was a bit of a miracle that happened. She said that she even grew quite fond of it. So I asked her if she wanted to babysit Jake for us for a while, but she declined. Can’t think why, poor extremely hairy Jake 🐢

It had turned out to be a really lovely day again and was quite warm in the afternoon as long as you stayed in the sun. So Gary took me to Bourton on the Water for the afternoon where we became proper tourists!! We slowly wandered about, walking along by the side of the river, round the back streets and in a few of the shops. We even had an ice cream as it was so nice πŸ˜ƒ

 

I had to show you this photo as I love this tree!

When we got back in the evening we then walked down to a local pub and I had a really lovely roast lamb dinner πŸ˜‹ and an elderflower presse.

I was very lucky to have spent my Sunday afternoon and evening in that way #spoilt

Old friends

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Wednesday 9th to Friday 11th March

I went to visit my old friend Sue and her husband John this morning. Very sadly, Sue is suffering with cancer at the minute and John has his own health problems. I have known them for years and used to work with Sue in the offices at Chipping Norton Hospital many years ago. They are both so lovely and very kind and it’s just not fair that they are going through all these bad times. It did upset me, but it was SO lovely to see them both.

In the afternoon I had appointments with two different building societies in Banbury to try and sort out my finances! My head found this very difficult to do when I had just spent the morning with someone very ill with cancer. 

I spent Thursday at home and looked forward to my walk in the evening.

On Friday I went to Banbury to see another old friend who I haven’t seen since before my transplants. I used to be a childminder and I got to know Deb as I looked after her baby daughter Sian from just a few weeks old. Sian is now 15 😱 Unfortunately I didn’t get to see her as she was at school, but I remember she was such a good baby, very sweet, she was another part of our little family at the time. It was so nice to have a good catch up.

And that was my week’s holiday soon over and done with. Nothing too thrilling but I had visited two people that I REALLY wanted to catch up with and managed to get a few other things sorted, so I was reasonably pleased with that πŸ™‚

Funny feelings

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Monday 7th to Tuesday 8th March

Clinic today. My brought forward visit because I reduced my medication too early if you remember and my bloods needed to be checked.

I was going to take my mini to the QE today but when we did a bit of a longer drive to somewhere else before Robyn didn’t really enjoy the journey. She kept fidgeting, couldn’t get comfortable and said that the seat was really hurting her back! I must agree, I did find it a little uncomfortable too :/ So off we went in Robyn’s car and had our lunch on our ‘picnic bench’ in the hospital and did lots of people watching πŸ‘€

I have been having a few sort of different feelings around my liver area recently and haven’t been feeling quite 100% so I thought I had better mention it to the consultant just in case it is anything to worry about. He didn’t seem too bothered about it because I’m not particularly unwell or have any temperature I guess. He said he would just look at the blood results as normal when they were back.

We then had an appointment to meet the Communications Officer there too. We sat and had a chat with him about my stay in the hospital. Robyn joined in too telling him about her Dunbars Daring Donor Deed challenge. I’m hoping we are going to feature in the hospital newsletter and website, so we will wait and see.

I read today about a couple that got the call to say there was a liver available in Chicago for their adopted daughter but they wondered how they were going to make it there as many flights were being cancelled due to blizzards. Thankfully a carrier company stepped in and flew the family so that the operation could still go ahead. Have a read about the brave Toddler’s liver transplant

Tuesday morning and I didn’t have to go off to work. I’m on holiday for the week πŸ€—              I didn’t do anything too exciting today though, I spent my time catching up with a few jobs that needed doing and had a walk into town in the afternoon to get a bit of shopping.

Afternoon tea

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Friday 4th to Sunday 6th March

Work in the morning. I think it was better than my last experience there on Wednesday. I was a bit more prepared though and had my extra jacket on ready!

Then early evening the snow started. I wasn’t expecting that, I had no idea that had been forecast! It came down very quickly with some very thick flakes and soon settled on the ground. And on poor Buz!

 

It didn’t hang around for that long though thank goodness. I think by Saturday lunchtime most of it had gone.

I can’t not give a mention to curry Saturday! Chicken, mushroom and cauliflower. With my favourite green beans in mustard seeds of course πŸ˜‹

Sunday = Mothers Day

I had been told to be along at my sister’s house for 1.00pm. I was looking forward to a bit of pampering πŸ™‚

Robyn, Leah and Hannah had planned something for me and Julie. They had a bit of a catastrophe apparently and I had to give Leah and Hannah (wearing her big white fluffy slippers πŸ˜‚) a lift along to the supermarket while Robyn held the fort!

Then eventually, da-da!!!

 
A homemade afternoon tea. How lovely. A great idea πŸ˜‹
It was a fine afternoon too so we then all went for a walk down to the cemetery to visit my mum 😦

It was a nice walk. We walked back through The Common and had a bit of a go on the play area.

 
Me and Julie decided to have a go on the big slide that has been there since we were much younger! Quite scary that was 😱 I also don’t think many people had been down it either as our jeans were very dirty when we got to the bottom!!!

Back for a cup of tea and cake! and then a little later me and Gary went to the Blue Boar in our town to watch a band. They were called The Average Wyatt Band. Their really good, we have seen them many times before 🎺

Good to be out and about πŸ™‚ Last Mothers Day was spent in my hospital bed.

Mixed bag of weather

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Tuesday 1st to Thursday 3rd March

So following our own radio interview yesterday, Tuesday night was the turn of my own consultant from the QE in Birmingham, Professor Neuberger. He was talking about Primary Biliary Cholangitis on Radio 4’s Inside Health programme with Dr Mark Porter. If you click on this link Inside Health you can download the episode on PBC. There are also many other health issues that have been covered in this series, you might see other topics that interest you too.

On Wednesday morning I walked to work in the pouring rain. I was rather soggy when I arrived. Not a good start to the day, having to sit in my damp clothes. I already wasn’t feeling 100%, I felt a bit sick, my body was aching and I was so tired that I had to keep stopping myself from yawning!

It was also so extremely cold in the shop today. I was actually sat shivering at one point (and that is not me exaggerating unfortunately) and my fingers were literally blue. It’s quite hard to get little coins out of the till when your fingers are numb! I asked if I could get another jacket from somewhere in the end as I didn’t think being this cold would be doing me much good. This did eventually warm me up a bit just slightly and I made it to the end of my shift.

I was so glad to finish work today, but then after all of that I walked back from work – in the hail. Ouch!

Today was a day full of literally all weathers πŸŒ§πŸ’¨πŸŒ¨β›…οΈ Everyone had been commenting on it. I know for a fact that I had definitely had enough of being cold and wet. I was so relieved when I eventually got home, I was definitely looking forward to a hot drink.

I think I spent the whole of the rest of the day trying to get warm.

Thursday evening’s walk was a trip to the new Aldi which has just been built and opened today. Everyone in the town has had their own opinions on whether it will be a good thing or not and how it will affect the other shops that we already have (including the Co-op supermarket where I work) so we will see. Anyway, we amended our route to include a visit to the store. It was very bright and clean, and tidy! I don’t think I will be visiting there too often though as the thing is, Leah goes and does our main shopping at the minute in Banbury as she also likes to get some special Slimming World meals and sauces etc. which you can only get from Iceland I think. So the only shopping I have to get at the minute is the list of odd things that Robyn and Leah normally text me with during the week if they want anything, and I always get these baskets of shopping from the Co-op when I have finished work! Only downside to that is I then have to lug them home πŸ›πŸ˜€

Radio stars

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Monday 29th February

So, an extra day that you wouldn’t normally have. Leap Year day. What did you do on your extra day this year? Any proposals?

My friend Jackie was having a real birthday for a change! She was going to be 12 today!

And myself and Robyn were going to be doing an interview on Radio Oxford! (Someone had seen the Dunbars Daring Donor Deed page, got in touch with Robyn and invited us on to Kat Orman’s show).

So an early start to catch the Park & Ride bus in to Summertown and to their studios.

We had no idea beforehand of what Kat was going to say or ask us, so we had to be quick thinking and give a full answer and try and make it interesting too, as we were live. Not easy. Definitely all quite scary. Listening to it back I think Robyn did a great job. Lots of people have since said how good she was πŸ€— It even inspired 2 more people to sign up to become an organ donor. Excellent news.

 

It turned out to be a lovely sunny and reasonably warm (for the time of year) day so when we finished we decided to catch another bus and went into the centre of Oxford. We looked around a few shops and  got some food and then it was time to go home so Robyn could get her gym and yoga fix when we were back.

It was also Rare Disease Day today which is held on the last day of February “to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families”

 

I saw a post on the PBC Foundation’s Facebook page about a lady who has Primary Biliary Cholangitis. It turns out that her mother, two sisters and a cousin also suffer with this condition. Have a read Newspaper story

The reason I found this particular story interesting is because right from the start when my illness was first diagnosed I was told that the condition was not hereditary.

“The cause of this disease is unknown. It may be related to problems in the immune system. Although PBC is technically not a hereditary disease, meaning a disease caused by a specific gene or genetic defect that is passed from parent to child, there appears to be some family link”

I do quite often wonder about this side of my illness. Why did I have it? My mum or dad didn’t have the illness. I have two brothers who aren’t affected, though it is even more rare in men. But I also have two sisters, both a few years older than me, and neither show any signs of having PBC. I really hope my two daughters will be the same πŸ€”

New photos

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Sunday 28th February

Sunday was a quieter day after all the excitement of yesterday.

By the way, we made Β£209.56 at our charity day which I am really pleased with. Then we made another Β£50 from the lucky number game that Robyn sold mainly over Facebook! And hopefully, if we can sell all our names for our chick and Easter egg game, we will have made another Β£100. That will be just great if we can do that. We also got another three people signed up to the organ donation register, even though we weren’t really promoting that side of things too much, as the idea this time was mainly just a day for fun. So I think we can safely say that the day was a great success πŸ˜€

I have put some new pictures up on my Photos page πŸ“Έ  Please have a look.