Thursday 4th to Friday 5th May

No volunteering for me this Thursday morning. I hadn’t had a very good night’s sleep, so I was very tired and my body was aching. I was due to attend a meeting in the afternoon and I also needed to do some birthday present shopping (for one of my daughters!) It would all just have been too much of a rush, which I really didn’t think I was feeling up to today 😫

So I went into Oxford, went around the shops and actually managed to be quite successful with my present shopping. I then took myself for a much needed sit down, a good excuse for a Costa ☕️ 

Just as I started to make my way to my rearranged assessment meeting I received a phone call. ‘Sorry but we don’t think we will be able to see you today’. Do you remember that I had exactly the same thing happen to me when I first went for this assessment back in March? I did actually complain to the Advisory Service then and they sent me a letter back thanking me for my feedback and saying “I have requested that your next appointment goes ahead without any further inconvenience being caused”!

Well that request didn’t work then did it! So while I was waiting for them to definitely decide if they had time to see me or not I went for a walkabout in Christ Church Meadow and then down by the river, where I saw Oxford’s own version of the Loch Ness Monster!!! 🐲

I called into the assessment centre on the way back from my walk. They couldn’t see me today. The people who had the time slot before me were still waiting in there to be seen. There wouldn’t be enough time.

I will be complaining again. They state in the appointment letter they send out to you ‘It is important that you attend this assessment’ and yet every time I make the effort and change my plans to go to every appointment which they send through to me, they then decide they haven’t the time. It’s not on.

I called into one final shop on my way back through the city centre and then caught the Park & Ride bus back to my car. I then still needed to quickly pop into Sainsbury’s and also get some petrol ⛽️ for my car.

I eventually got in at 6.55pm. I left the house for our Thursday evening walk at 7pm. I had just made it!

We had a nice walk along a country footpath and through the farmer’s fields for a change this evening as the weather was nice and dry. The problem was that a couple of the other ladies unusually wanted to get back for other things this evening and so they really picked the speed up to what we normally do. As I was already feeling pretty tired from my lack of sleep, my busy day shopping, my walk along the river and the stress of the cancelled meeting, I found it quite hard work. I was exhausted when I got home 😴

Work on Friday. Then I walked straight from there up to the doctor’s surgery for another B12 injection and yet another blood test, 3 attempts this time before they managed to actually take my blood. I walked back home and then decided to clean the kitchen. Busy (tired) old me!!!

Leah finished working at the dentist’s today. She has been there for three years and has got on well, qualifying to be a dental nurse while she was there. But she is moving on to something she has always wanted to do 🏥 I really hope she will be okay in her new job 😏

Sunday 30th April to Wednesday 3rd May

Just a little trip to a local garden centre for this Sunday.

So as a result of me coming off of the hormone tablets, the bleeding had started again on Saturday ☹️ And seemed to be getting heavier. There was a walk in Brailes taking place this Bank Holiday Monday morning and I desperately wanted to do it. 

But as a result of the bleeding I just wasn’t going to be able to do this. I was very upset 😭 angry and frustrated.

Later in the day when I had calmed down a little, I went into Banbury with Leah, Robyn met up with us for a short while, then she went off to Tom’s and me and Leah somehow ended up in Pizza Hut!! 🍕🍟

Tuesday morning was an early appointment to have my blood taken and then I had to get straight to work. My first day back after being off for three weeks  

I was looking forward to going back, but also slightly dreading it, its always a bit strange isn’t it? I think when you’re unwell for a length of time you start to find yourself in a bit of another world, I always feel very cut off from everything. People just don’t realise the effect it has on you mentally as well. Work went ok, even though I still didn’t feel 100% It was good to be a part of the ‘normal’ world again! 🙃

I then had an appointment for another Vitamin B12 injection later in the afternoon (these seem to be hurting more and more with each one I have. When I told the nurse this she said that other people that have had it say exactly the same thing!) so I incorporated this visit to the surgery into my walk for the day.

Wednesday was just a normal work day and then a nice walk with Leah in the afternoon 🚶‍♀️🚶‍♀️

Saturday 29th April

Robyn, Leah and myself went off to see Ed Sheeran 😃

Click here to have a listen 🎶

We had a great time 👩‍👧‍👧

Thursday 27th to Friday 28th April

I decided that I would take myself into Oxford this Thursday morning to volunteer, even though I wasn’t feeling completely brilliant But I was fed up with just being mainly at home on my own. And if I went out it would mean that I would get some other jobs done too – I would be able to drop some bags that I had previously sorted out into the charity shop on the way and I also had some forms that were needing to be completed about my volunteering duties so I would be able to pop in to the office and get those done too.

I was so glad I had made the effort to go. I was able to have a chat with a lady there who also has PBC, she was waiting for a bed to become available at the Queen Elizabeth Hospital in Birmingham so that she could have a liver transplant assessment. It upset me a little to see the poor lady like this. (It also reminded me of how ill I was myself before transplants and again just how lucky I have been). I think we got on well and she said she had enjoyed talking to me. We both agreed that it is ‘nice’ to meet another person going through the same illness as yourself I really do hope everything works out well for her …

I called into the volunteering office to do my forms and then I set off on one of my walkabouts! This week though I also needed to find a couple of places on the JR site that Leah has to go to in a couple of weeks for her induction for her new job (more about that later). I found them, I will be able to show her how to get there now, and then I went to get myself a coffee. I think it was at this moment when I realised that I didn’t have my iPad (I take it with me almost everywhere I go!) I tried not to panic and to think calmly where I might have left it. I went straight back up to the volunteering office – and thankfully there it was, I had left it on the side. (They had left a message saying this on my phone but I hadn’t seen it 😏) I don’t know what on earth I would have done if my iPad had been well and truly lost. I would be a wreck 😭

I had a previously booked doctor’s appointment later this afternoon. While I was there I asked at reception if my latest results had been phoned through to Birmingham as I had asked, apparently one of the receptionists was just doing it, then it seemed that the doctor she was speaking to wanted to speak with me so I had to go through into the back area of the reception and have a chat with him! All this time, the doctor that I had an appointment to see was waiting for me 😏 The reason for this appointment was mainly to get myself referred so that my solar keratosis (a common skin condition caused by sun damage) could finally be treated again. If you remember I didn’t want the cryotherapy treatment when I went in February as it was just before my birthday. So they gave me some cream instead, but I decided that I didn’t like the sound of the side effects. As they don’t do any minor treatments for these in my own doctors surgery I need to be referred again to now have the cryotherapy treatment, it is not something that can just be left. The doctor said that she would refer me 👍

I also told her that I was still suffering with the pain in my big toes. She didn’t think it was gout (which was previously suspected) it may just be the start of arthritis, but it seems like it’s something I’m just going to have to put up with at the minute. And I guess while I’m doing my walking challenge it’s not really going to get any better 😧

I just got back in time for my Thursday evening walk, this evening Kate’s husband drove us to Whichford Wood so we could see the lovely bluebells.

My Birmingham doctor then decided to ring to speak to me again just as we pulled up in the car and I was needing to put my wellies on He told me that I needed to reduce my tacrolimus medication now to 1.5 mg twice a day. Also my albumen level was showing a bit low so please could I arrange to go tomorrow and have my blood taken yet again. Hope they can fit me in 😏
It was a nice walk. I also noticed that I wasn’t quite so breathless during the walk this evening.

First thing Friday morning I was up at the local hospital outpatients department as I had my follow up appointment with Dr Nicholls (gynaecologist from the John Radcliffe Hospital).

He didn’t have the results of my scan or my biopsy there to give to me, which he did apologise for and was frustrated about. He told me that he would get his secretary to find these results out and he would write to me. I told him that my doctor had told me to gradually reduce the hormone tablets over a few days now that the bleeding had stopped and that I had now stopped taking these completely. He was fine with that. So I guess I just wait to hear from him now with my results and his suggestions of treatment …

When I got back home I had a text from my brother George asking if I was in this morning. So round he came and had a cup of coffee ☕️ Jack, Leah’s boyfriend wasn’t at work today either, so he joined in the chatter for a bit before going outside to sort out a strip of our garden at the side of the house. He cleared the weeds and a bit of rubbish that had been left there, put some top soil down and planted some seeds. Now to wait for the wild flowers to grow 🥀

I then had yet another appointment, up at the doctors surgery this time, to have another one of my Vitamin B12 injections and they had also agreed to take my blood at the same time. I had planned to walk up there but because of my morning visitors I was a little late leaving so I had to rush a bit, which I could have done without  

So after all the stabbings with sharp needles, I decided to go for a bit of a walkabout to get a few miles in, over 4 miles I walked this afternoon actually 🤗



Monday 24th to Wednesday 26th April

After a weekend of not hearing from any doctors with the information on what I needed to do about my vitamin deficiency, I thought that maybe I should try and get hold of someone in Birmingham myself to tell them that I still wasn’t feeling that brilliant and also that I was suffering with this fluid retention. This is not a straight forward job, it takes many phone calls and waiting around on the line. But when I did eventually speak to a doctor he said they hadn’t heard anything from my doctors 🤷‍♀️ So I rang the surgery and the receptionist told me that the doctor I had seen on Friday did not work on Mondays and that’s why nothing had been done. Grrr.

In the afternoon I went out for a nice walk with Kate. But it was hard work, I was really quite breathless.

I rang the surgery first thing Tuesday morning to ask if they could please ensure that a doctor rang the Queen Elizabeth Hospital in Birmingham as a doctor there was waiting to hear from them. I made it very clear that it did not need to be the doctor I had seen last Friday, any doctor could ring and speak to him.

I had arranged to meet my sister Lynda for a coffee so I walked along to Caffè Nero. I was SO breathless. I needed a sit down when I got there. We had a coffee and a chat. I got a bit of shopping then went home. I had intended to go for a bit of a longer walk rather than going straight home but sadly I had to admit to myself that there was just no way I could do it today ☹️

I rang the surgery when I got back and then many times more throughout the afternoon, still no one had made contact with Birmingham. I was getting very cross with them, there are many doctors at my surgery, surely just one of them would have been able to find a spare few minutes to ring. I told the receptionist about my breathlessness and she said she would ask a doctor to ring me. Which did actually happen later in the afternoon. I took the opportunity then to tell her what had been going on, that it simply wasn’t good enough and she said she would ring. This finally happened at 6pm. It had taken the whole day. She then eventually rang me back to let me know what they had decided. I needed to go back to the surgery first thing in the morning again and have yet more blood taken as they needed to see how my liver was doing, and these results needed to be given straight to Birmingham when they arrived. I also needed to start having injections of  Vitamin B12. In this link they show a list of symptoms, I seemed to be suffering with most of them! but especially with the extreme tiredness/lack of energy, pins and needles in my fingertips and a sore mouth. I needed to have a loading dose of 5 injections over a two week period to start with. I also needed to give a urine sample for checking.  And because I had now been taking the iron tablets for a while, this level had now gone back up a bit – but keep taking the tablets though! 😏

I must show you these very scary looking clouds which started to appear around teatime.

It soon ended up as this.

Looks like it’s January or February out there, not April! 🌨

There was no change in the way I felt on Wednesday.  I was up early to get to the surgery to have my blood taken, which as usual they had trouble with, and I had my first Vitamin B12 injection. I came away feeling quite fed up with it all – and sore! 

It took me a while then to get myself going, I think I just sat on the sofa for a while just half watching the tv and in a bit of another world, then I gave myself a talking to and made myself get up and I started to sort of couple of boxes that I still have lying about

I had just got myself into the swing of this and was getting on quite well with it when Leah came in from work so I had to stop, as we had previously arranged to go for a walk, which I also wanted and needed to do. Just frustrating, that’s all I’m saying!!!

Mend the Living is a “heart-breaking” novel about 24 hours in the life of a heart that is transplanted and it has won a book prize. Sounds like an interesting read 📖



Friday 21st to Sunday 23rd April

I had an appointment this Friday morning at the Churchill Hospital in Oxford. This was to check how my kidneys are doing. It has been booked for a long time, at the request of my Birmingham consultants, as they have seen from my blood tests I have taken there that one of the results isn’t quite what it should be. They know that tacrolimus (the anti rejection drug that I have to take) can affect the kidneys so they just wanted me to get them checked out by a proper kidney doctor.

I had to get up and leave reasonably early in order to get to my appointment in time. But I didn’t feel well. My face and eyes were swollen and puffy and my head felt like it was going to explode, I guess from the fluid. My legs had fluid in them too. I looked and felt awful.

Anyway I had no choice but to get ready and go.

I saw the doctor reasonably quickly and he said that it is something Birmingham just needs to keep an eye on, but I don’t need any treatment for my kidneys at the moment. So that was good news.

But he still decided he wanted some blood from me to test They run a system there like when you’re queuing to be served on the deli at Tesco, you pick a ticket and wait for your number to come up. So I waited, and waited, and waited. It was getting ridiculous. The numbers were hardly progressing at all. I still wasn’t feeling brilliant, and I was getting very frustrated and fed up. I knew they were already testing my kidney function from the blood I had taken just on Wednesday, surely I really didn’t need to wait this ridiculously long time for the same thing again?

But I made myself stay, I’m really not sure how I did it. I had been waiting for over an hour and a half when my number finally came up. Then the nurse that was there wouldn’t even attempt to take my blood! She could see all the previous bruising on my arms and had trouble finding a suitable vein so she said she wasn’t even going to try. She said I’m going to find a doctor. I said I was just not prepared to wait any longer, I just wanted to cry, I didn’t feel well and I was so fed up with everything. But thankfully the doctor was just outside the door. She was searching for suitable veins for ages so at least she wasn’t just stabbing me for no reason! and I think she eventually was successful in getting some of my blood on her second attempt.

I was then out of there as quick as I could. I walked to the cafe to get myself a coffee. I also picked myself a chocolate brownie but it actually wasn’t very nice! 😩

I had managed to request a phone call from a doctor at my surgery earlier as I wasn’t feeling very well and she rang me back just as I sat down with my much needed coffee. When I explained to her about the fluid and that I wasn’t feeling good, she said could I get to the surgery to be seen.

So I made my way back to the Park & Ride bus stop, got on the bus which took me back to my car and then I drove straight to the surgery! The doctor told me that from Wednesday’s blood results it showed that I was deficient in some vitamins but she didn’t really know what she should do about it, she needed to talk to my doctors in Birmingham to check with them first. She said some of my symptoms may be caused by that deficiency. She took my blood pressure again, that was okay. She told me to gradually decrease my hormone tablets as the bleeding had stopped, as they may not be helping me to feel that great either. But all in all my visit wasn’t that brilliant, not that helpful really, I will just have to wait and see what Birmingham say I guess.

Home to tidy the kitchen!

I had seen somewhere on the Internet that a steam train, I think it was called The Cathedrals Express (but I’m not 100% sure!) was due to be passing through Banbury train station.  Gary likes trains 🚂 so we thought as we were going there anyway on this Saturday afternoon we might as well go and have a look.

Well I was certainly in for a surprise. I have been on a steam train before, a few years ago now, and I’m pretty sure it just trundled along the track so that we could have a good look out the windows at the scenery. I certainly wasn’t expecting this one to come through at I don’t know how many miles an hour! I wondered why the station announcer kept telling everyone to stand way back behind the line. And now I know! It was SO fast, it shocked me and took my breath away 😱😂

We had a walk into town to do a bit of shopping. We also had a look around the garden centre there. I was pretty exhausted from all the walking about. Then home we went.

It was a warm sunny afternoon. Gary put my storage box back together for me in the garden. Julie and Hannah came round and helped me and Leah do a bit of garden decorating!

The day was finished off with a takeaway Chinese.

Sunday morning was a trip back to Homebase to return one of the garden chairs, as when we were all out there yesterday we had noticed that one of them was a bit faulty! They easily just swapped it for another one.

Then home to wait for Robyn to finally come home from her travels – YAY 😁

Myself and Leah had put up some banners and balloons 🎈inside and out to welcome her back.

She had a brilliant time 🗺 

Lucky thing!

A cuddle and a sleepover followed. It was good to have her back.




Saturday 1st to Saturday 8th April

Just to fill you in on the missing week before I became ill and I didn’t get a chance to tell you about …

Saturday. April Fools Day. Have a read of these fake news stories that The Guardian newspaper collected. I also thought up some individual silly little April Fools Jokes and managed to catch Robyn, Leah and Gary first thing in the morning 🤣 And then there was just a shopping trip to Banbury.

Sunday. A lovely warm sunny day. Myself and Gary went on a great walk. This is more or less the route we took.

Although we did also do some extra wandering about when we came across other things that we wanted to go and have a look at! Our walk was in fact 5.41 miles in total 😁

We called round to see Gary’s mum and dad when we had finished and ended up staying for a barbecue, the first one of the season!



Then when we were on the way home we saw Gary’s friend through the window of the pub so we called in to see him too. That ended up being an unexpectedly long busy day 🙂

Monday. Another nice day. During our visit yesterday Gary’s dad had given me some cuttings from his garden so I spent a little bit of my time doing some potting 🌱 (I hope I can keep them alive 😏)

In the evening I had a sleepover with Robyn as it was the last night she was going to be around for a while …

Tuesday. Gary’s birthday. After work Robyn came out for a nice walk with me, before she left to stay at Toms in the evening 😰 I was very upset. I don’t like saying goodbyes and I don’t like it when my girls go away from me.

Wednesday. The cause of all the upset. Robyn was flying to Brazil today 😫 She was going with Tom and his family, to visit his brother who is living out there at the moment. I wanted her to go and have an amazing time, I was just worried for her safety and I knew I was going to miss her, a lot.

After our work for the day, me and Leah had a walk up to our Aldi supermarket which is just outside the town and we ended up buying a nice chicken and asparagus flatbread each for our dinner. I think we were both trying to keep our minds occupied and not think too much about Robyn being missing that first night.

Thursday was a bit of an eventful day. I went to the JR Hospital to do my volunteering job. On the way home a light started flashing on my dashboard. Because I had got into so much trouble with Gary the last time that happened! I thought I better act on it immediately. So I pulled over when I could and rang him, he told me to look in the manual and I discovered that the light was telling me I may have a puncture Apparently I have the kind of tyres that you can still drive on for a while with a puncture, so I could continue steadily on my journey. 

But typically today it mattered what time I would get home this afternoon as I had a lady coming to see me from Birmingham, to do some research. I then had to try and get hold of her to explain why I would be a little late. She was waiting for me outside the house when I got there 😫 

So straight into her questions. The purpose of the research she was doing ‘Is to explore peoples’ experience of living with PBC, with particular interest in peoples’ experience of being seen by doctors in different settings. The overall goal of the research being that patients are treated in the right place by the right people’. I always like to help with all the research that I can 🤗

Then a little while after the lady had gone Gary appeared to sort my tyres out. Apparently there was no puncture, but there was hardly any air in any of them … Whoopsy!

Evening walk 👣

Just a work day for Friday.

I came across this when I was looking on the Internet. It’s by Japanese artist Gaku. What do you think?! Something to do when you are at a loose end one day!

And then Saturday was a trip to the garden centre with Leah and Gary. We had a nice wander about! and then I decided that we should take some funny photos to send to Robyn in Brazil. (Because I then became ill they didn’t actually get sent so I am putting them on here so you can see them now Robyn 😀)

Anyway, as you can see, apart from being upset, I had been feeling really quite well. There were no warning signs at all for what started to happen on Sunday 9th  

Tuesday 18th to Thursday 20th April

I didn’t go back to work this Tuesday morning. I just didn’t feel up to it. And thank goodness I didn’t as I also had an upset tummy, my legs were swollen with fluid, my mouth and throat were just SO incredibly sore. I just kind of spent the day pottering about the house catching up with a few things since my time away and I think trying to get my head around what had happened to me. It was the first time I had been on my own since coming out of hospital, straight into a fairly busy Easter weekend. The first day of everyone being back to work and Robyn still being away in Brazil.

I managed to get hold of one of the liver doctors in the Queen Elizabeth Hospital to tell them about the mystery phone call I had received asking me to let Birmingham know about my low tacrolimus results in my blood. The doctor couldn’t quite believe that a message had been left for me and that none of the doctors in Oxford had been in touch with them. He told me that I needed to get a blood test done as soon as I could to find out my latest tacrolimus level so they knew whether my medication needed changing, he also wanted a kidney function blood test taken, and could I please ask the doctor from the surgery to ring them with my results as soon as they had them.

We didn’t seem to have too much food in the house I didn’t know what on earth I could have to eat? Then I found a couple of sweet potatoes. I decided to make some wedges, then I found a little tin of baked beans with sausages in the cupboard, I added some cheese and this is what I got!

It was actually really quite tasty. I recommend it! The only problem being my really sore mouth 😫 I will definitely try again when I have recovered.

Have a look at these delicious cheese sandwiches. The more basic number 1 just looks so delicious, that’s the one for me! Sometimes I wish I lived in London so I could just pop along to these places and pick something tasty up (especially when we have no food in our cupboards!)

So on Wednesday morning I went up to the surgery to have my blood taken. The doctors in Birmingham needed some and I also needed to have my hb level taken as a follow up from my blood transfusions in the John Radcliffe to check how I was getting on. I only had it put back in a few days ago and now everyone seems to want to keep taking it! 😩 The nurse also checked my blood pressure, it had gone back up again so that was one good thing. I still had my upset tummy, my swollen legs and my very sore mouth. I think I should really have mentioned it and maybe seen a doctor but the nurse seemed a little grumpy and I wasn’t feeling particularly great so I didn’t bother to mention any of it

I then decided to take myself for a Caffè Nero before going home again but I really wasn’t in the mood too much, I didn’t stay for that long and soon took myself back home.

It was a warm sunny day, so to keep myself entertained and to try and cheer myself up a bit, I decided to spend some time in the garden. After a recent visit to a garden centre I had bought a few little flowers ready to go into some of my ‘looking sorry for themselves pots’ that were brought with us from the old house. Our garden is all slabbed here which I like, saves the extra unwanted job of lawn mowing all through the summer. And I have been looking forward to the warmer weather coming so I can start to decorate it with flowers in pots, bunting and lighting. I’m starting to do a bit of a garden makeover! I will keep showing you how I am getting on with lots of photos, but here’s just a couple for now.

The geranium on the left I bought in memory of my mum. When we all lived at home my mum always had geraniums in the garden, of all colours, and then in the winter she would bring them in and put them in all the windowsills around the house, until they could all go out again the following year! I remember we all used to moan about them being in the way and they never used to smell the best!

The plant on the right (sempervivum) was given to me by Gary’s dad and I just put it in the froggy pot that Leah bought for me 🐸 I just need to look after it very carefully now and hope I don’t kill it

The identity of the mystery caller was finally revealed today too. She rang me again. She was actually one of the liver doctors from the JR who the Gynae team had contacted, she had noticed that my tacrolimus level was very low and was ringing again to make sure I had been in touch with Birmingham!

On Thursday I decided that I was going to give the bathroom and toilets a bit of a spring clean. I knew it was going to be quite tough as my whole body was already aching but I wouldn’t let myself get away with doing nothing. I then carried on with some other jobs after that too. I just had to keep myself busy, I couldn’t relax

A lovely shower 🚿 ! and then it was time for the Thursday evening walk. This was the first walk I had been on in over a week since becoming ill (so frustrating, I am going to be SO behind with my #walk1000miles challenge) but even after my busy day I was determined to go as I hadn’t really been out of the house too much for a while, it was time to try and get me and my body moving and socialising again.

I really enjoyed the walk, it was good to get back out into the real world, although it did hurt me. My feet were already hurting before I even left. Perhaps my changing blood levels had caused a build up of extra uric acid, which is possibly what is causing the problem. (Thank goodness I have a doctors appointment coming up soon to hopefully sort this out).

I then went round to Gary’s and collapsed on his sofa for the rest of the evening. I think I had done too much today!

I’ve had better weeks ☹️😡😴

Sunday 16th to Monday 17th April

Easter Sunday. Robyn had spoilt me and had left me some Easter treats even though she was away on her holidays 🏝 

We went to visit Gary’s sister and family as we had been invited to a barbecue there. We had some lovely food.

Easter Monday. We went over to the local Kingham duck race. Gary, myself, Leah, Julie and Hannah. Gary was the only lucky one out of us all with his winning duck! This meant it was automatically put into the final at the end of the day, for a chance to win the big prize. Unfortunately it didn’t come anywhere near 😖 (Robyn – I chose and put some money on a duck for you. You didn’t win!) We saw my niece Laura there with her husband and two little boys. I don’t think they were very successful either. Oh well, it was a bit of fun.

Then we went back to Julie’s house for our Easter egg hunt. I think we each had 14 little eggs to find around the house.

Take a look at how many calories are in your own Easter eggs and just how much exercise you should be doing to work them off! Whoops 😬 we didn’t do much towards working ours off. A bit of a lazy afternoon and evening I’m afraid. This suited me as I wasn’t especially feeling full of the joys of Spring, but what a waste of time really. All those things I should be doing, including going for a nice long walk. Obviously I haven’t been able to go out for just over a week now, I am going to be falling way behind ☹️

(My dad died 23 years ago today 😰 Goodness that’s a long time ago. Just think of all the things I have to tell him, all the things that he never knew happened to me during all these years. It’s very sad.) 

Friday 14th to Saturday 15th April

It’s Good Friday! And I was allowed HOME!!! 🏠

The doctors came round reasonably early in the morning and said that I could go. Both my blood pressure and my hb level in my blood were still low but had improved from what they were. The bleeding had still stopped. I was being sent home with some antibiotics, also hormone and iron tablets. I will receive a clinic appointment for about a month’s time. I need to see a doctor at my surgery sometime this following week so they can check my blood pressure and to take some more blood from me to check how all my levels are doing

I probably didn’t ask the doctor enough questions about what had happened, what effects it may have had on my liver and what the course of action might be in the future so I don’t have to go through all this again, but I just wanted to go home. I had been poked and prodded about no end with different doctors and nurses trying to get blood out of me and trying to put cannula’s into me so they are able to give my iv treatments. My arms were very bruised and sore. I am not the easiest person to get blood from at the best of times (my veins are very tiny and some are now quite hard from where they have been used a lot in the past) let alone when I have lost a lot of my own blood! 

One morning the doctor came round at 6.30am and tried to get blood from both of my feet. This was so painful 😩 I said to her before she started that she might find she would be more successful if she let me actually wake up, have a drink and a tiny bit of breakfast before she tried. But no, she wouldn’t listen, she seemed intent on putting me through two lots of pain before saying ‘I think I’ll let you have your breakfast and then we’ll try again later’ I could have punched her!!! When you have been in hospital and these situations many times before you do get to know your own bodies. Why won’t they listen to their patient? 

I don’t know how many times I was brought my tacrolimus medication for me to take first thing in the morning when I kept telling them that you have to take it about 12 hours apart and I hadn’t taken it until 10pm the night before! It’s so different being a patient on a gynae ward, I guess you take it for granted that the nurses would know about the timings for anti rejection medications, but of course it’s not that much of a regular thing for them so many of them didn’t know anything about it. 

The nurses that looked after me were all lovely though. Most of them were young and they all looked after me really well. When I was finally allowed to walk to the toilet again they all were quite insistent that they walked alongside me and waited outside the loo for my return journey! (I was very dizzy as a result of my very low blood pressure so was only allowed a commode by the side of the bed at first).

But now I was feeling a bit better, all the dizziness had gone and I was going home. Thank goodness. As I was also very conscious of the fact that the more time I was just led about in my bed there I was getting more and more at risk of picking up some kind of infection, which would make me feel much worse than I actually originally was! So all I needed to do now was to wait for my new medications to arrive up on the ward from the pharmacy. This took until just after lunchtime. Leah had already arrived during the morning and was waiting with me to take me home.

It was a weird feeling when I first got back home. I didn’t know what to do with myself! Robyn was in Brazil, Leah had to go and feed her dad’s dogs as she was looking after them for him for a couple of days – so I did a bit of washing up!

A lovely shower 🚿 a little drive out in Gary’s car 🚗 which was later followed by a nice takeaway curry 🍛 – this was how I celebrated my freedom 😀

I still didn’t feel particularly brilliant on Saturday. But we took a trip into Banbury as there was a garden furniture set waiting to be collected! along with some other bits of shopping. Gary did a barbecue in the evening.

Then I found a random ansaphone message from a doctor at the JR saying that my tac level in my blood was too low (but there was no mention of the number it actually was) and that I needed to get in touch with my consultant in Birmingham. This was a bit unsettling as this is the medication I take to stop my body rejecting my liver. I guess it makes sense that it would be low as a lot of my own blood has gone and has been replaced with someone else’s. I tried to return the call but the doctor wasn’t around anymore and no one else seemed to be able to help me. What was the point of me trying to ring the QE for advice when I didn’t have the level to give them? So this problem wasn’t going to get sorted out tonight …