Monthly Archives: August 2015

Scary car park

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Wednesday 26th August

Breakfast was being cooked for us this morning. We both decided on scrambled egg on toast.

My tummy had decided it was going to play up today. Hate being controlled by that. It upsets me.

Anyway, what were we going to do today? It was still raining 😐

We found an undercover market, so thought we would pay that a visit. We were out in the car today as we didn’t fancy getting soaked to the skin again. We parked very easily in a multi storey car park, but soon found out why, we think. It was terrifying! There was a big automatic metal shutter gate on the entrance which immediately shut down behind you and one on the exit too, it felt like we were trapped in there. Then we couldn’t find the exit and had to drive round the car park a couple of times, it was starting to freak us out! Then when we got to the market it was supposed to have had over 50 stalls to browse but there were only a few open. Bit of a disappointment. Maybe it’s more of a weekend thing? So we went through this car park trauma for nothing!!  :/

We decided to just go back into town. But we drove round and round looking for a car park that wasn’t incredibly expensive for just 1 hour and then getting nowhere in the one way system. Robyn was getting more and more stressed. So we eventually decided to drive back and park outside our B&B and walk back in  to town again. Luckily the rain had eased a bit so we didn’t get quite so wet this time.

We went to Pizza Express for our dinner and then to the cinema to watch Bad Education, Jack Whitehall’s new film. I like him and it was good!!

When we eventually got back to our room Robyn seemed to have a bit of a problem with her hair 😯

  
hahaha πŸ˜†πŸ˜‚

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Rather wet

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Tuesday 25th August

Up and out of the house by 8.15am! I was going to Brighton with Robyn πŸ˜ƒ

We had booked a boutique style B&B.

  
We dumped our stuff in our room and went off to explore. We headed to The Lanes, an old area of Brighton with narrow streets and little independent shops. It was absolutely pouring down β˜”οΈ We walked around them for a bit then went for something to eat to get out of the awful rain. We wandered about the more up to date shopping centre then decided to make our way back to the B&B. We were getting more and more soaked. My canvas shoes, Robyn’s suede boots were completely wet through. I then thought I should buy some shoes really as I hadn’t bought another pair with me that were suitable for the weather and there was no way mine were going to dry for a while. So we ended up walking back up the hill to the shops yet again! This time we WERE going back to the B&B. It was still pouring down but as we were already soaked we decided to walk back a different way along the seafront.

It was incredibly windy too down there. It was a battle to walk against the wind. Our umbrellas were no good now :/ We passed a few other people that were mad like us, but mainly it was deserted. The ice cream shacks and little shops were all shut up. It was like being at the seaside in the middle of November, not August!

The sea was SO rough.

  
My whole body was now starting to hurt. We had been walking all day, been carrying quite heavy shopping bags and battling the wind and rain. We  worked out we had walked over 3 miles. It was a mile from our B&B to the town, then another mile back again. Around the shops, up the long hill to the shopping centre, back down, then the same again because of my need to buy shoes! Crazy 😠

Me and Robyn both had our showers and put our pyjamas on!! And that was it. We had planned to go out for a drink in the evening but I could hardly walk, my feet, legs and my whole body was hurting. I had definitely done too much. And Robyn just couldn’t face going back out in the awful rain again.

So we just chilled, had a picnic in our room, watched some tv, did some blogging. Were we boring? Or just relaxing on our holiday? We couldn’t decide!!

Long grass

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Saturday 22nd to Monday 24th August

Saturday = eye test day πŸ‘€

Me and Gary went in to Specsavers in Banbury. Neither of us had been for an eye test for a LOT of years! Real bad that. So Gary ended up needing some glasses which he was quite chuffed about! It was fun choosing some and watching him trying them all on πŸ‘“

As for me, as always not straight forward. I have one eye that can see things close up perfectly and one eye that can see things far away perfectly. So I only EVER have one eye working at a time and have been like it for years. My eyes and my brain have obviously got used to this I guess. So I got to choose! I could have glasses but I would need to have two pairs and keep swapping them, or have bifocals which can take a lot of getting used to, or stay as I am. They will deteriorate as I get older (or grow up as the man put it!) but just the same as anyone else’s does. I decided to stay as I am, for now.

In the evening I had a bean burger! Not a very interesting bit of information I know, but I just wanted to give it a mention as I haven’t had one for such a long while and I really enjoyed it πŸ˜€

Sunday teatime we just went to watch a local band that I like in the Blue Boar. Met some friends in there too and had a bit of a chat.

On Monday I thought I had better have a bit of a tidy up because my landlady was coming round!! We have been waiting to have a new path laid in the back garden for rather a long time, the slabs have been left all the way up the garden on the edge of the grass making it hard to cut around and in between them, so now we have a bit of a vicious circle. The grass is too long making it difficult for anyone to want to start the job and if no one starts the job and the slabs don’t get moved its hard to cut the grass! It’s hard because I still have to wait for other people to help me with things like this at the minute. Hopefully a gardener is coming round next Monday. Stressful times 😦

Radio 5 star!!

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Friday 21st August

I had a lump and a bruise appear on my leg the other day and it was slightly swollen and a bit sore. I couldn’t remember knocking it anywhere. Of course, as soon as Robyn found this out I had to make a doctors appointment for later in the day to check there was no blood clot. All this ‘discussion’ happened before I had even got out of bed!

Then, before I had got my breakfast, I got a telephone call from the Chief Executive of the British Liver Trust! Would I like to do a radio interview this morning? Bit unexpected but yes that will be fine. He told me someone from the radio would ring me shortly to explain.

So I was going to be on Radio 5 Live and it was to talk about a study that has been done where they asked the public how much they think the NHS spends on a wide range of procedures and what the actual costs are, because most people are way out when they are asked. They then just picked two procedures to talk about on the radio. So they had asked me for the liver transplant operation and another lady who had a Caesarian, to justify how important it is to spend this kind of money on people to keep them healthy and alive.

I text all my family and even though they were at work they all seemed to manage to re-tune their radios and listen in! It was a bit scary but I think I did ok. I just had to talk about my illness, how long I have had it, and then what treatment I had before and after my transplants like scans and x-rays, clinic appointments, hospital stays, fluid drains and medication, which showed just what is involved and maybe why it costs so much. 

Members of the public said about Β£500 for a Caesarian, it’s actually Β£2,ooo. And they said Β£12,000 for a liver transplant, it’s actually Β£70,000. This did get me thinking. Blimey I’ve certainly cost the NHS a whole load of money. Β£140,000 straight away for just the two transplants, then everything else on top. Think of all those (must be) thousands of tablets that I have had over the years and all that delicious hospital food!! 🍲   Am I really worth all that money? :/

I had decided in my mind yesterday certain jobs I needed/wanted to do today and it was starting to look like I wasn’t going to be able to get them done because of the phone calls I was receiving, waiting for my radio appearance!! and I knew I was still having to get to my doctor’s appointment yet. This was annoying me as sometimes I find it hard dealing with things that change my plans.

One of the jobs I needed to do was to ring the Department of Work & Pensions. This is always difficult at the best of times, you have to press numbers, listen to music while on hold and normally still never get through! This time the number was unobtainable when I rang, so I had to find another number to ring. She told me that apparently they had now changed their number. When I rang the number that she told me I didn’t even get through to anyone, it was just continually engaged, so I found another freephone number this time and thought I would ring that to try and save some phone charges. He couldn’t help me. I was VERY fed up by this time, I gave the engaged number one more try with no success, so I had to leave it and went to catch my bus to the doctors’ surgery.

I didn’t have a blood clot anyway, at least that was good news.

I had to face making my phone call again though when I got back as my deadline to contact them by was today! :/  Thankfully this time I eventually got through. Now just the forms left to fill in 😦

One job done and I made myself do a couple more.

I was very stressed and very tired by the end of the day.

Aching

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Monday 17th to Thursday 20th August

I can’t even remember what I did on Monday! Probably not much as I think I was quite tired from yesterday’s trip. Just pottered about I expect as I don’t very often just sit down and do nothing.

Tuesday was a sad day though. I went to Rosco’s funeral.

Wednesday and Thursday were home days again. I seem to be doing a lot of these at the minute. I decided to have a walk to the town and get a coffee on Thursday just to get me out of the house for a while then got a bit of shopping before walking home. Then in the evening it was walk time πŸ‘£ with some friends again!! We walked for an hour and a half this week and had a good old chat, catching up with the latest gossip! I could tell I had done this though when I got home. My feet, legs and back were really aching :/ I suppose we did walk quite a long way but it did frustrate me that night that I still struggle with some things.

Lovely cakes day

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Sunday 16th August

An early start as today I was finally going to get my Christmas present!! 

A day trip in a narrowboat on the Oxford Canal πŸ˜€

Me and Gary went to pick up my brother George, my friend Nina and Robyn. Leah followed us in her car with Jack. Julie and Hannah had already left! They were my chosen crew for the day πŸ™‚ A few days before I had sent them a message jokingly telling them what their jobs on the boat were for today. Some were more pleased than others!

A bit of instruction when we first got there and we were off.

  
  
It was great fun. The boat gently chugging along but with lots of noise and messing about from all of us lot on board! Leah started driving, then that was taken over by Jack. Leah seemed to enjoy pulling the boat into the side and also along, by the thick ropes! Gary was on lock duty, doing a very professional job as always! Hannah was supposed to have been helping him but she seemed to have difficulty getting out of the boat! Julie kept herself busy making cups of tea and coffee. Nina kept taking photos of everybody when they were doing silly things! Robyn just swanned about occasionally doing something when she felt like it! And George just seemed to get himself settled at the end of the boat and soaked up the sunshine. That was supposed to be my job :/

But I was spoilt. When we had picked Nina up earlier her husband David had made me a lovely Victoria Sandwich cake.

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Then when I actually got on the boat Julie gave me the cake that she had made for me.

We also had a nice picnic lunch on board. We passed some lovely houses with gardens backing onto the canal, a lovely looking outdoor tea rooms right on the edge of the canal with little shelters and vintage looking table and chairs under them, definitely worth a visit on another day. We passed some much bigger and lovely looking boats and we all said ‘good morning’ to each other and waved as we went by. We got so far down the canal, then it was time to turn around and make our way back as we had to keep an eye on the time.

We then decided a trip to one of the pubs we pass on our way back was necessary. Then me, Gary, George and Nina went to Bitter & Twisted in the town for some dinner. A good end to a GREAT day.

Thank you everyone for coming. Im looking forward to another adventure real soon I hope.

Quiet days

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Friday 14th to Saturday 15th August

I think Friday was a home day with not much happening 😦

On Saturday we had a bit of a lazy morning – then I really fancied a piece of cake! Before transplant I used to love eating cake, any kind, then I guess because of my appetite problems, I haven’t really been fancying it too much, but thankfully I’ve started to again now. Missed it 😏 So Gary took me out for a drive to see if we could find a nice shop selling homemade cakes somewhere. Had a bit of a wander about and I managed to find a lovely rock cake and a brownie! Yummy πŸ™‚ Gary then decided he fancied a barbecue later so we bought some supplies for that as well!

A quiet couple of days really.

Bad day

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Thursday 13th August

I had an appointment to see Dr Ellis this morning at Chipping Norton hospital. He’s my original consultant, I’ve known him for a long time. He was the guilty party when I was in the Horton hospital in July having just about every test you could think of! Think he just wanted a catch up from that really as I’m still under the doctors in Birmingham at the minute. I guess I will get fully transferred back to him after a while. He asked what had happened once I got transferred to Birmingham and said he was glad they took it all as seriously as he had. 

Then we had a chat. He knows the doctor I saw two clinic visits ago, Professor Neuberger. He trained with him at Kings College hospital in London. He said he had a lot of respect for him and I said I did too, that you could tell he knew what he was talking about. After seeing so many different doctors over the years, you know which ones know their job well and which ones don’t come across very well. So of course he then wanted to know what I thought about him! 

When the nurse took my blood pressure it was a bit higher than normal for me. I have always had quite a low blood pressure. When I had it taken at clinic in Birmingham on Monday it was high too. Dr Ellis said it could be the Prograf (my anti rejection medication) causing it so he wanted to check the tacrolimus levels in my blood. But they had already taken my blood in clinic on Monday too so I’m guessing he is just waiting for the results of those to come through is he? Or I’m supposed to be doing something about this myself or I’m just waiting until when I go back to Birmingham in a few weeks? But the Birmingham doctor didn’t seem too worried about it!

The nurse was Rose. She lives in a village near to me. Her partner had a liver transplant too, in March this year. He went to Kings in London for his. He has had a few problems since. Rose told me that she wants to do something at the local hospital to promote organ donation and maybe I would help? Great idea.

I got the bus back into town and decided I would treat myself to a coffee and a seeded muffin as I hadn’t had any breakfast, so I sat in Cafe Nero for a while. It was nice to be away from my spring cleaning! I thought I would also have a bit of a wander round the shops before I went back home. But of course my tummy had other ideas. I thought I had better just go home. I wasn’t happy, I still couldn’t do what I wanted to do.

When I got home I got a bit upset. I think it was the high blood pressure, the upset tummy and the fact that I was back inside on my own earlier than I wanted. I also had noticed a bit of a pain in my side which was uncomfortable. All this reminded me that I was still not 100% yet. I was very fed up. I just sat and half watched silly daytime tv. Then after a while I decided I needed to pull myself together and do something to take my mind off things. A few more odd jobs got done.

I decided to make myself an omelette. Cheese, ham and tomato. The problem was when I tried to tip it out of the pan it fell in pieces onto my plate. I had to laugh to myself. It looked a bit of a mess but it tasted rather nice!

I then went out for a walk with some friends. When I’ve been before we just went around the town but this time we went across the fields. I used to take my dog Jake 🐢 but he’s got too old now and he can’t do it anymore 😦  It was lovely to go back but the problem was I had gone out in shorts, the corn was high and was scratching my legs and I had to dodge the stinging nettles and thistles. The others in front were also pointing them out and treading them down for me!! After an hour of trudging round the fields I was worn out. My feet were aching. I could tell I had done enough, especially after my emotional morning and jobs all afternoon as well.

I went to Gary’s in the evening and then got in trouble with him :/

Was glad when today was over 😦  What a day 😠

Oh by the way, I have added a new ‘quote’ to the sidebar and some new pictures, this time of Cornwall, to my Photos page.

Spring cleaning

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Tuesday 11th to Wednesday 12th August

Back to reality. These two days were just spent at home. To try and stop myself going completely mad I decided I was going to have a bit of a spring clean in my kitchen. Exciting stuff I know. And then when Robyn got home from work she told me off for doing too much. But what else am I meant to do?! :/

Different doctor

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Monday 10th August

Clinic day.

Robyn’s day off so she had the job of taking me. Poor thing! I kind of dread my clinic days now. I never used to mind going before but since my recent stay there I don’t like it at all, I think it’s because I’m worried they are going to tell me I need to stay in. And I’m also getting worse when they take my blood.  I know I need to stop all these worries now 😱

I saw another different doctor. I find it quite difficult when this happens as they don’t get to know you and they all work in different ways and have different opinions on what they need to do. And I miss my surgeons :/

Anyway I was doing reasonably well but still not 100% yet. I still get an unsettled tummy and need to get to the loo quickly. He said there is a whole list of things that could cause this but it may still be because of the very strong antibiotics they gave me during my recent hospital stay. He didn’t really want to do anything about it at the minute, just wanted to give it more of a chance to settle on its own. I hope it is that reason. Even though I am very fed up of being like this.

He is also going to arrange for me to have an ultrasound scan on my next visit to see if the fluid I had (also during my recent hospital stay) has now gone.

I thought I had an appointment to see the dietician too but they didn’t have a record of it on their computer, so I got away with it this time!!

We left for home and as it was nice, stopped on the way back for a cup of tea. We sat outside at a farm shop. Much nicer than a hospital visit.