Monthly Archives: September 2015

Not well πŸ‘Ί

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Wednesday 23rd to Thursday 24th September

Didn’t feel very well when I woke up this morning. Funny head, slightly dizzy, weak and wobbly, feeling sick at times so off of food a bit, all that kind of stuff. Nooo, not again 😦 I hate it when I don’t feel well now, it really gets me down. Guess I lived like that for so long and now I’m better I don’t like going back to a ‘sick’ day.

Especially as the weather was quite nice and I have a garden that I am trying to sort out. I get very frustrated when I can’t do things that I have planned to do in my head. And being outside jobs I obviously have to rely on the weather, I don’t fancy getting soaked doing it. I have piles of wood I need to get rid of where Gary dismantled Jake’s old dog kennel for me, old wooden garden chairs that the previous tenant were kind enough to leave with me! :/  a shed to sort which has some junk in that I brought with me from my old house, old tiles to sort and get rid of, need a run to the tip, the list goes on and on. None of this was going to happen today though 😦

Also I never know if I should see a doctor or not. Everyone seems to tell me I should. But I’ve seen enough of doctors to last me a lifetime and I don’t want to be one of those people that are always there unnecessarily. I checked and I didn’t really have a temperature so that also made my mind up for me that I wasn’t going to ring for an appointment.

Anyway I did try to carry on with my day as normal, as I always do, and I did manage a few other things but I know that I needed to sit down a lot and just do nothing at times :/

In the afternoon I walked along to see Julie and Hannah to give myself a mini trip out of the house.

Thursday I still was feeling the same. I really needed to get some things from town but as I had mainly just been at home for two days I really wanted to go out later for my weekly walk with friends, and I knew I wasn’t going to be able to manage two walks today, feeling like I did. So I ditched the town idea and even though I knew it was going to be tough going I went out for my evening walk instead. I needed to be in touch with some people from the outside world for a bit! It was nice as it was a lovely evening but yes, my body WAS finding it difficult.

Hope I feel a bit better tomorrow, got a day out planned.

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Meal out

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Monday 21st to Tuesday 22nd September

Julie and Hannah are both on holiday from work this week. So on Monday, after Robyn had been to the gym πŸ’ͺ and then on to yoga (is she mad :/ ) we went to meet them in Cafe Nero. Then we popped into Co-op to get a bit of shopping. I saw a few of my colleagues and told them I would be back to work soon. I am looking forward to it now but I do wonder if it will still be the same as the shop has been rebuilt since I’ve been away and has doubled in size I would say. There’s now loads more staff obviously. Somehow I don’t think it will still be the same atmosphere to work in, but I’ll give it a go and see what happens! After the shopping was done me and Robyn went back with Julie and Hannah and had a cup of tea with them. A ‘spending time with the family’ day!!

Tuesday was just spent at home. In the evening I went out with some of the girls from work and some others that are not from Co-op, for a meal. When I was working the same group of us used to go out for each other’s birthdays. Obviously I have now missed quite a few of these through being unwell and not really seeing the girls, so when I saw Violet in the shop yesterday she said they were actually going out tonight and did I want to join them? Good for my confidence building as I’m going to be working with some of them again soon. A funny evening.

Going to the pub

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Friday 18th to Sunday 20th September

After my day out yesterday I had some jobs to do about the house so I think that’s what I spent Friday doing. Then in the evening I walked through the fair with Gary this time. We called in to the pub to have a drink before going home. As the Rugby World Cup is going on at the minute they have it playing on the TVs in there. I had a great time watching the blokes lined up along the bar and glued to the screen, shouting at the ref, so involved in the game that they seemed to be oblivious of everything else that was going on. Then also watching everyone coming in and out, some with the teddies they had won from the fair! Fun evening.

On Saturday we had a wander around Charlbury Street Fair. They have a few kids fair rides but also one of the roads gets closed and they have stalls there with people selling their homemade crafts, charity tombolas etc and different foods. Classic cars to look around and a fire engine. All that kind of stuff. The organisers were lucky as it was a lovely day. We saw Gary’s mum and dad so had a quick chat with them and then had a drink in the pub there. 

In the evening Gary decided he wanted to cook a curry! Very very tasty πŸ˜‹

Sunday was Chippy Jazz day. Different bands play in different places around the town. Mainly in the pubs. Normally we would go and watch quite a few of these bands but Gary didn’t seem that interested in going until later so I went to see my sister Julie and Hannah (and Robyn, who was at their house too). They were playing a board game when I got there, called The London Game. This game has been in our family for years, it’s based on the London Underground, my mum used to love playing it. Hannah had some chocolates on the go too. It was a proper Sunday afternoon like we used to have years ago, before everything changed 😦 Miss you terribly mum πŸ’”

Later me and Gary went to watch one of the jazz bands that were playing in the Blue Boar. They weren’t my cup of tea so I didn’t really listen to them in the end. So I sat and had a chat with some other people that were in the pub instead!

All these pubs I seem to be going into lately! Just to let you know my drinks are ALWAYS still non alcoholic. Don’t worry I’m not abusing my new liver already. I normally just have tonic water. I just like to get out and about and see people when I get the chance.

My day out

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Thursday 17th September

I was looking forward to my day out today. The British Liver Trust are holding ‘Love your Liver’ events around the country and today they were in Oxford so as it wasn’t too far away from me, I had made my mind up to go and see what went on. I was going to have a day out on my own.

I walked into town and caught the bus. I decided to sit right at the front on the top deck so I could have a good nosey about while on the way πŸ‘€While I was on the bus the British Liver Trust tweeted to remind people about the clinic today so I replied saying I was ‘on my way’ and they replied to me saying ‘please come and say hello’. How exciting! It was a sunny day and the sun was streaming through the big windows. It was SO hot on the bus and there was no escape πŸ˜› I was glad when we arrived and I could get some fresh air and cool down.

I found the place quite easily. There were some ladies stood by the door welcoming people, I was talking to one of them and then she asked if I wanted my liver scanned! so I thought I should explain what had happened to me and then I told her about the tweets and she said she would introduce me to the Chief Executive Andrew. I said that would be nice as I had already spoken to him on the phone. He was the man that rang and asked me if I would like to do the interview on Radio 5 a few weeks ago. So we sat and I had quite a chat with him. I then saw Dr Collier, who was the doctor that looked after me when I was in the JR in Oxford having my drains last year, and she was also the one that told me that she thought it was time for transplant and she contacted Birmingham again which started the ball rolling :/ She told me I looked really well. I did say to her that maybe I could have my liver scanned as I did want to join in but she said ‘no, you don’t need to have that done, I’m sure your liver is fine’ πŸ˜’ Oh well, I did try! She also asked me how I was mentally (she obviously knows what a big part this plays and said that she knows of people that have been living with their transplant quite happily for a couple of years, then it suddenly sinks in what has happened to them!) and that she would be happy to have my care transferred to her in Oxford when they will let me, to save all the Birmingham visits. Trouble is my Banbury consultant wants to do that for me too! I had a chat with a couple of other people too, none of them could believe how well I was looking 😊 It was nice to chat with some other people who were interested in what I had been through. They were all so very friendly.

The aim of the clinics is to raise awareness of liver disease really and that it is very important to keep your liver healthy. There were lots of different people to talk to, people from the Liver Trust and the medical profession, you could go on the computer to do the online screener and maybe have the Fibroscan they were offering (this is similar to an ultrasound, it measures the stiffness of the liver through sound waves). Then from the results you could be told that your liver is in good condition or be advised to go and see your doctor. It’s a real good idea to get things checked out, the earlier the better.

YOU can do the online screener if you would like. Go to http://loveyourliver.org.uk then click on Love your Liver Health Screener. Good luck! πŸ˜€

They seemed to be busy anyway, I think they had a successful day. I was very glad that I had paid them all a visit to see what went on.

I decided then to take myself for a Costa coffee and a bit of a blog. I was also tempted by a mozzarella, sun dried tomato and pesto panini πŸ˜‹

Time for a walk around the shops. And guess what I bought this time. Yes, another bag! Grey this time with tassels. Hope they all like it back at home :/

I was a bit early for the bus home, so I found myself a doorway near the bus stop and I sat and did a bit more blogging!! Loved it.

When I got home it wasn’t long before it was time for my weekly walk!! The fair had just come to Chippy for a few days so we added a walk through the fair to our walk around the town this evening πŸ‘£ 

My poor feet 😦  Nice day though πŸ™‚

Fun House

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Tuesday 15th to Wednesday 16th September

On Tuesday I couldn’t really get myself up and motivated to do things and even when I did, I didn’t seem to have much concentration. I think my visit to the hospital yesterday was still playing on my mind. Eventually I just did a bit of pottering around :/

As I was feeling a bit fed up of being at home on my own I text my sister Julie to see if she wanted to meet for a cuppa in Cafe Nero when she had finished work. She replied saying she couldn’t because she would be getting in the bath as she was going out to a local fair later with Hannah. Witney Feast 🎒

So I decided that I would join them, and then we all persuaded Robyn to come too. I tried to get Leah to come but she wouldn’t 😦 Some of the rides at these fairs are quite scary looking aren’t they?! And sometimes just sitting on any old blocks of wood! I don’t like the look of them :/ Robyn loves to go on all of them. She did persuade me to go in this Fun House with her though πŸ˜ƒ

  

Then as we were walking back to the car we decided to call in to the church where they were serving drinks and a band was playing. So we had a cup of tea with the vicar.

  

Their all having great fun aren’t they?! πŸ˜‚πŸ˜‚πŸ˜‚

On Wednesday I just did a bit more pottering about I think. Not a very exciting day.

Don’t forget to have a look on my Photos page if you would like to see the latest photos I have uploaded of our trip to Brighton πŸ“·

Anisa

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Monday 14th September

Clinic visit today. I was looking forward to it for one reason only. I was going to see a very special lady first. My nurse from Critical Care, Anisa. She looked after me when I first went in there and had just come back from surgery, when I was very ill between transplants and quite a few times after. I remember her telling me that she went down to theatre with me when I was about to have my second transplant and that she gave me a wash and did my hair for me while we were waiting to go in. That is very special to me and whenever I think about it I get upset …   She also always did my hair after my morning wash too, not all the nurses do that. This probably sounds really silly to everybody else but when you are led in a hospital bed for weeks and are not able to move or do anything for yourself, these tiny things feel so nice and make you feel a tiny bit human again, maybe even a bit more presentable for visitors when they come, because they must have been thinking ‘oh my goodness me’ or words to that effect! when they first saw me. I must have looked horrendous. She was very caring and made me feel safe. Sometimes I felt very scared while I was in Critical Care and I was always so pleased to find out Anisa was going to be my nurse for the day. When I had my crazy dreams, she was sometimes in those too. Anisa – you are an angel πŸ‘Ό

Anisa was also very helpful to Robyn, Leah and Gary too. As she was the first nurse they saw when visiting me after surgery they told me she always explained everything to them and tried to reassure them. Anisa told me they were all very nervous and scared when they first got there. I think they soon felt at home in there though, always asking questions of the nurses and doctors, they knew everything that was going on in great detail. I think they knew as much as the liver doctors did at that stage! This meant that they could tell me everything that had happened while I was asleep and when I was crazy, which I had told them before transplant that I definitely wanted to know. I don’t think they know how extremely proud of them all I am, for the way they coped and dealt with things through a very difficult time. Totally amazing.

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So anyway, me and Robyn went down to Critical Care when we first arrived at the hospital, pressed the buzzer (Robyn told me that the buzzer still fills her with dread from her time visiting me) and were told that Anisa was coming out to us. She asked me if I was okay and how I was getting on. She told me I looked amazing! She was so pleased that I had come to see her. She said they just get to see the patients when their all swollen and full of wires and don’t normally see them again after that. As we were talking my liver transplant co-ordinator Julie came round the corner. Bit of a coincidence! So we had a bit of a chat with her too. Then Anisa asked if I wanted to have a look around Critical Care. Hmm, when I went in before I found it a bit upsetting, but I did want to go in again. Kind of :/ In we all went. Anisa was going around asking the nurses that were free if they had looked after me! So I met two more, Tracey who I remembered a bit and Sarah who I remembered a lot!!

Thanks Anisa – for everything 😚

Then it was time for my scan. I was having an ultrasound before clinic today, I thought that the doctor told me last time that it was to check if I still had any fluid but the lady just seemed to be checking that everything seemed okay I think. So I asked her and she said there was a tiny bit of fluid around by my spleen but nowhere else. She said it all looked and sounded okay (they listen to the blood flow) so that was good news.

I was not allowed to eat and was only to drink water before the scan so I was now a bit peckish and weak feeling! But because I had to wait ages for my scan we didn’t really have enough time to get lunch for me so we just went to the Costa that is in the hospital and I got a latte and a blueberry muffin! Of course Robyn had been very organised as usual! and had brought her lunch with her.

Bet she wished she hadn’t πŸ˜€

It was then time for my clinic appointment. I saw another different doctor. I don’t know if he was in a rush to get home or what but it was as if he wanted to get us out of the room pretty quick! I’m not going to go into detail but I left the room feeling a bit let down. I haven’t felt like that with any of my visits there before. I know I don’t like going to clinic anymore but I’m sure it wasn’t just me and that was the reason why I was feeling like this :/

After you have seen the doctor you then have to go back to the waiting room to wait to have your blood taken. While we were waiting we saw a man who was a couple of beds away from me in Critical Care, he was sat forward with his head in his hands and didn’t look well to me. This, along with my appointment with the doctor I think, all got to me and I got very upset. Bit embarrassing while sat in a waiting room full of people but oh well, you can’t help your emotions can you?

Then this lady sitting next to me showed me lots of bruises up her arms and said she was embarrassed by them and had to wear long sleeves all the time. It was caused by her medication. She said ‘I nearly died 18 months ago’, she had some kind of hepatitis. I said to her ‘oh, I nearly died in February!’ Funny isn’t it, what you say to complete strangers in waiting rooms 😳

I was so glad to get out of there. It had all blown my mind.

We stopped off to get some shopping and then headed for home. Even that wasn’t going to be straight forward for us today. Apparently there had been an accident on the motorway and we got stuck in loads of traffic again.

Poor poor Robyn. She hates having to take me to clinic and doing other things for me on her day off and I don’t think it’s too fair on her all the time either. I don’t like being a burden to anyone. Sorry 😠

Just have to say

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I was watching This Morning yesterday and they did an interview with two people coming live from America. The man had been given a FACE transplant and the lady who was sat next to him was the donor’s sister. Can you imagine that, whenever she looks at that man she is seeing the face of her dead brother. I find that incredible.  

Seven of his other organs were used too. Amazing donor family.

Afternoon in the garden

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Saturday 12th to Sunday 13th September

Went to Oxford on Saturday so that I could take the bag back that I bought the other week. No one else really liked it too much, but apart from that my iPad didn’t fit in it comfortably, that’s no good to me as wherever I go my iPad goes too!!! They wouldn’t give me my money back though so now I have a credit note for a shop that I don’t even normally go into. Thank goodness Christmas is on its way!

Emma had been staying at her friends in Oxford so after our shopping was finished we picked her up and all came back to Chippy.

I then went back to Gary’s and had garlic and herb spatchcock chicken with some curly fries! 😜 Yummy though.

On Sunday afternoon Gary came down to put my garden storage chest together. Yay! 

  
I was also pottering about in the garden while he was doing this. Jake decided he was going to help me with these tiles I needed to sort out.

  
There was a big hole in the grass at the top of the garden so I decided I was going to fill it in with the dirt that Gary had been digging out to level the ground!!

  

It was PBC Day today and the PBC Foundation were asking for photos to be sent in to them with the #movementasmedicine so I tweeted the above photo to them, they replied to me saying ‘great photo, thanks for sharing’. Towards the end of my illness and before transplants, I wouldn’t have had the energy to even think about doing something like this.

After a while Robyn came and sat in the garden with her pyjamas on (she hadn’t got much sleep the night before) and then Julie and Hannah came around, so we all sat and had a cup of tea in the garden. How civilised!! Well it was until Gary decided to break my garden chair and ended up sat in the plant pot which was underneath it πŸ˜‚

Later I bought Gary a Chinese takeaway to say thank you! 😊

I had started to feel better this weekend apart from my body aching, that didn’t seem to want to go away. And my feet and ankles were still quite painful, think I’m going to ask the doctor about this on Monday, as their hurting me!  πŸ˜¦

Jobs

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Friday 11th September

Had to get up early this morning because I was due to have the gas and electric meters changed! The gasman arrived first. He didn’t like dogs so I had to shut Jake out in the garden. Apart from that it was straightforward for him. Then the man from the electric arrived. He couldn’t get one half of the cupboard open where the wires were he needed to get to, it was screwed shut and had then been painted over! I told him to just force it open somehow, my landlady wouldn’t mind about the cupboard, but he said he wasn’t supposed to do any damage :/ Oh no I really wanted it all to be sorted today. So he had a bit more of a try and eventually managed to get it open just enough to get his hand in. Then he discovered the wires needed replacing too so he needed to go back out to his van. But when he came up the stairs he whacked his head really hard on the low ceiling at the bottom and shouted out. Whoops! Poor man, I know from experience that it REALLY hurts. I bet he was glad to get that job over and done with!

While these jobs were going on I was also trying to get hold of the plumber and a builder to do some other jobs. The plumber was going to come round later today and the builder on Saturday morning, to see what needed doing.

Then I got a message from Lynda saying did I want to meet her for a coffee. Ok then! So off I went.

After I had been back a while the plumber knocked on the front door and Gary knocked on the back. The plumber looked at the pipe out in the back garden, couldn’t see a major problem but said he would be back next Saturday maybe, to change something and see if that worked! Gary had come to put together a big storage chest to go in the garden so I could sort/tidy some more of my stuff. But that wasn’t straight forward either. It needed to go on level ground. So as he wasn’t going to be able to actually put the storage chest together this evening, I persuaded him to dismantle Jake’s very old dog kennel and level the ground a bit more so the chest could go there!! Thanks Gary 😊

I then cooked myself some food because as I was out in the garden I had missed my chance of Robyn making some for me! 😦

And all of this happened while not feeling well again today. Fiddle, after feeling better yesterday I thought I was getting over it.

Different hair

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Monday 7th to Thursday 10th September

I had a meeting with someone from HR and my boss Adam today in the Co-op. I wasn’t well though, still had terrible headache, felt a bit sick, body was hurting and a bit wobbly. Really didn’t want to have to bother with something like that, why did it have to be today 😷 But I didn’t feel like I could cancel it. I had been due to see him a couple of months ago but it was when I had my infection and was in hospital and apparently, Hannah told me, Adam had been expecting to see me since then but I didn’t get a letter or anything :/

Off I went. I walked along with Robyn, she was going to get some shopping while she was waiting for me. Then it turned out that I was only seeing Adam. He just asked how I was getting on really and if I was thinking of going back to work and when. A very short meeting. Sure I could have told him this over the phone. Oh well, at least it’s been done now.

We popped in to see Julie and Hannah. Hannah had a day off from work and had been Christmas shopping can you believe?! Hope you got me something good Han! 😊

Tuesday, Wednesday and Thursday were mainly just spent at home again. I still didn’t feel 100%. Robyn wanted me to see the doctor but I was trying my best to resist this. I just didn’t want to end up in hospital again and that’s where I think they probably would have sent me. 

I think it was on Tuesday morning that I didn’t get myself out of bed until 10.30! I almost gave in and rang for an appointment but as I had no temperature I thought I would give it yet another day!

Wednesday afternoon I went along to Robyn’s salon as she was going to do my hair for me πŸ’† My hair seems to have changed since my transplants. It seems to have gone a bit wavy and out of control, sticking out in weird places just when and where it feels like it. Robyn always asks me ‘right, how are you having your hair this time then’ and I normally never know and it frustrates her! So this time I gave it a tiny bit of thought and said maybe I should let my hair get a bit longer to see if that makes it a bit heavier and stops the sticking out. Robyn agreed. And I also said I wanted to be a bit blonder. Then we were talking to Kayleigh, Robyn’s friend who works there too, and she suggested a copper colour which sounded nice. So we went ahead with that instead! When Robyn got to the cutting stage she noticed that the ends of my hair had gone really quite thin so I needed quite a bit cut off. So I went to the salon thinking I was going to keep the length it was and grow it and be even blonder. And I came out with shorter hair πŸ’‡ and maybe it was even a bit darker! I don’t think I will give it any thought again the next time!! I liked it in the end though. Anyway the main thing was I still got my bit of pampering. I love the way Robyn washes my hair, a lovely good old rub followed by a head massage. You can’t beat it! Thanks Robyn πŸ™‚

I seemed to feel a bit better on Thursday. The headache had finally gone. I went for a walk in the evening. I always enjoy that. My feet, legs and especially my ankles don’t though. I always suffer with those when I get back 😦

I have been feeling quite fed up for the last few days. I think it’s mainly because I’ve had enough of not feeling well and having an aching/hurting body and feeling exhausted. Makes everything you have to do so much harder.