Saturday 3rd to Sunday 4th June

A visit from baby James this Saturday and I wasn’t home to see him 😰

I discovered that I had completely run out of my Ursodeoxycholic Acid tablets (taken to help with my PBC). The pharmacist wouldn’t just give me some more as a repeat prescription so as it was the weekend I had to ring the Out of Hours doctors’ service, I explained the situation to the person on the phone and they said that a doctor would ring me back. I eventually spoke to the doctor, he sorted the prescription and supposedly sent it to the pharmacy. But when I went to collect the tablets they hadn’t received the prescription. So I had to ring back to the Out of Hours service again and explain what had happened, they had to get yet another doctor to ring me back, he couldn’t see on the screen where the first doctor had sent it to, so he said it would just be easier to do another prescription which he did, and thankfully when I went to pick the tablets up the second time the prescription was there. What a performance and a waste of the doctors’ time really 😏

Then it was a trip to The National Herb Centre. A great place 👍

I bought a liquorice plant (because my mum used to love eating it) to go in one of the tubs in my garden. I’ll let you know how I get on with growing it 🌱

I decided to set my tracker and see how far I actually walked around the herb centre during the afternoon. It was .64 miles. Every little helps!

My friend Nina was going to be 50 tomorrow and she was having a birthday barbecue on Saturday evening. I didn’t want to miss that. We had a nice time. We sat in the garden until late, it was a bit chilly but once the outdoor heater was put to work it became much more bearable!

A visit to the garden centre in Bicester this Sunday and a bit of shopping. A stop off at a pub on the way back for a roast meal 😋

As you can see we got half a carrot 🥕 !!! Carrots are one of the cheapest things you can buy aren’t they? They couldn’t afford to give us a whole one, really … 🙃

A visit to my sister Julie’s and then a watch of ‘One Love Manchester’ which was broadcast live on BBC1 and was attended by 50,000 people! This was a benefit concert organised by Ariana Grande after the bombing which took place at her own concert two weeks earlier. 22 people were killed and more than 100 were injured there. The money raised from the concert will go to help the victims and their families. It was a good concert, artists like Coldplay and Take That performed. 

These terrorist attacks that keep on happening everywhere are just awful and very unsettling 😖

Tuesday 30th May to Friday 2nd June

Another week of mainly work and walking and my big toe just being so painful. I’ve had to change the shoes which I wear to work now as the boots I was wearing has a slight heel and this makes my feet hurt even more, so I now have some black trainers that I found in the back of my cupboard! A bit more comfortable 🙂 I’m definitely getting old 👵

Another week of my body just aching all the time 😩 and feeling so tired and making everything a bit harder to do.

Tuesday was a visit to Jackie for a cuppa ☕️

Some nice warm weather again this week so an extra Wednesday evening walk with Kate and Sue. A lovely sunny evening and a nice walk 👍

I made it to the John Radcliffe hospital to volunteer this week followed by a trip into Oxford for my health assessment meeting, which can you believe actually went ahead this time! Third time lucky. Somehow I don’t think I will be lucky with the result though, the way they assess you is just ridiculous and I don’t think will ever show the true effects that having PBC and two liver transplants has on you, both physically and mentally.

Of course I managed to squeeze in another bit of a walk around Oxford

and Thursday evening’s walk was up to the old airfield and back across the fields.

On Friday I just felt completely exhausted – that’s all I can say.

I found this bit of information on the Facebook page PBC Angels (Liver Disease), it comes from a clinic in America.

‘It’s not clear what causes Primary Biliary Cholangitis. Many experts consider PBC an autoimmune disease in which the body turns against its own cells.

How Primary Biliary Cholangitis develops –

The inflammation of PBC begins when T lymphocytes (T cells) start accumulating in your liver. T cells are white blood cells that are part of your immune system response.
Normally, T cells recognize and help defend against harmful invaders, such as bacteria. But in Primary Biliary Cholangitis the T cells invade and destroy the cells linings in the small bile ducts in your liver.

Inflammation in the smallest ducts spreads, in time, and destroys nearby liver cells. As these cells are destroyed, they’re replaced by scar tissue (fibrosis) that can contribute to cirrhosis. Cirrhosis is scarring of liver tissue that makes it difficult for your liver to carry out essential functions.’

Just a piece of useless information really but thought some of you might be interested to read it!!!



Saturday 27th to Monday 29th May

Saturday – The 27th May, a day we call ‘Nanny’s Day’, as this was the day that my mum (obviously the girls’ Nanny) died, three years ago now 😰

We like to all do something together on this day that my mum also used to like to do, so myself, Robyn, Leah, Julie and Hannah set off for Stratford upon Avon. The weather forecast had predicted that it was going to be a reasonable day but it was unexpectedly SO SO cold. We were kind of dressed in our summer gear, so were all freezing. We had a bit of a walk about and did a little shopping, went and had a nice lunch, but that was about all we could manage 😏 Definitely no ice cream by the river for us that day! We went back to Julie and Hannah’s house and had tea and cake and watched Hannah putting feed out in the garden for all her little birdy visitors 🦅 – this is her new obsession!

I walked with Robyn to the cemetery so that she could put the lovely fabric flower that she had bought all the way back from Brazil on her Nanny’s grave 😍

Sunday – It was a nice morning. I decided to get up and go for a ‘reasonably early’ morning walk! I messaged Robyn and she said she would come with me. So I walked from Gary’s back to our house so that I could change and also meet Robyn, to find that she had a nosebleed so obviously couldn’t come. SO frustrating. Because I didn’t have a lot of time to spare and it seemed that everything which I had tried to arrange lately didn’t work out and I was completely fed up with it, I was a bit cross with her (yes Robyn, I know it wasn’t your fault and I was a bit mean to you and that you are going to write a comment about it! 😶) and I just went out on my own. What a bad mother I was 😣

It was a beautiful morning to be out walking though.

This was followed by a shopping trip to Banbury and later a barbecue 🌭

Monday – A Bank Holiday. A trip to Charlbury to Gary’s mum and dad’s for yet another barbecue, but this time a very wet one 🌧 Luckily there were two big parasols and an awning to sit under.

Monday 22nd to Friday 26th May

Time to go back to my normal hours at work this week. I was feeling a little better, better than I had for the last few weeks anyway, but still not quite 100% My body was still aching a bit and I was SO extremely tired, SO SO tired 😴😴😴 It was going to be tough.

It was a nice week weather wise! ☀️

Despite how I was feeling, I managed to get a good week of walking in.

A walk with Gary over the fields, which ended up being much longer than it should have been I couldn’t exactly remember where one of the paths were 🤔 so got a telling off!!! We ended up in a field where the cows were giving us evils! 😂

We thought the safer option was to turn back, I didn’t fancy being chased by a herd of cattle who were protecting their young, so we ended up walking uphill through a field of very long grass. It was very hard work and the way I was feeling I could have done without that part of the walk really. Did it though 💪

A nice walk with Robyn. We visited Pool Meadow, a place we used to go to when the girls were little. When it was nice we would take a little picnic and they would play for hours with their friends in the stream and going exploring.

Such lovely happy days they were. Robyn couldn’t resist …

After a cup of tea sat in Jackie’s garden, we took her dog Alfie out for a little walk, then as it was so nice I went straight out for another longer walk with Leah, just around and about the town.

I went to an appointment with Robyn in Witney and afterwards we went for a bit of a walk by the river there and then it was just myself and Sue for our usual Thursday evening walk this week.

Also there was a nice sunny afternoon walk with Kate.

Over 28 miles walked in these five days and as a result of all the walking, my toe is killing me 😫

I think I might have been suffering with hay fever this week as it’s been so nice, either that or my cold is back again. I have been sneezing 🤧 I don’t know how many times with a constant runny nose again.

Here’s a nice liver transplant story, a mother was able to donate part of her liver to her young daughter. Both are doing well 🙂 Amazing that just a part of the mum’s liver will regrow to fit the child. Amazing what the clever surgeons can do. Just brilliant 👌

Saturday 20th to Sunday 21st May

Saturday was a nice day spent at The Daylesford Summer Festival. A bonus for me was that I also walked just over 2 miles for my #walk1000miles challenge, just while I was enjoying myself and having a good look around at everything  🙂

It was a really good day out. I am already looking forward to going back there next year! 🤗

Sunday was a visit to Hilltop Garden Store. I think I have visited every garden centre that is reasonably near by to us over the last few weekends! I’ve never seen one of these little things ‘sunbathing’ at any of the others though!

This was followed by a walk and then a lovely meal out in the evening 😋


Tuesday 16th to Friday 19th May

Basically a week spent feeling completely terrible! ‘Shingles’, flu like illness and now a bad cold too (my nose had dried up and gone completely the opposite way now, my sinuses were blocked, so my head felt like it was going to explode from the pressure!) I don’t think anyone really knew just how ill I was feeling as I made myself get on with trying to be ‘normal’ 🙃

I made myself go to work but I asked if I could only work half my shift, so for two hours each time. That was SO hard to do. There was just no way I could have stayed any longer. I left work feeling really quite poorly. I don’t think it really did me any good.

By the middle of the week my chest started to hurt too and I got a chesty cough. I wasn’t sleeping too brilliantly either.

I obviously still wasn’t able to volunteer.

I had my dermatology appointment. (I had to find my way to Deddington Health Centre for this. A new place for me to visit!!!) This was for my solar keratoses on my arm and the top of my lip. The doctor decided on cryotherapy treatment for both, which he did there and then. It is very sore while it’s being done and it got to the stage where I just wanted to push the thing away! Once finished I had an odd kind of stinging sensation every now and again, especially on my lip, but it stops eventually and I guess as medical treatments go it’s not that bad.

I made myself go out and keep walking but on every walk I struggled and didn’t feel at all good when I got back home! And I also had the added problem of my feet hurting a lot too.

(Leah spent her first week in her new job. She is now working in the A&E Department at the Horton Hospital as a Nursing Assistant, something she has wanted to do for a very long time. I think she is the perfect person for the job 😉)

Saturday 13th to Monday 15th May

Saturday – An afternoon walk to the cemetery with Julie, Hannah and Leah.

Then an evening meal 😋 with everyone at the Toby carvery in Banbury for Leah’s birthday.

Sunday – I was about to walk home from Gary’s in the morning when I discovered that I couldn’t find my house keys anywhere 😏 I was locked out 😫 Luckily Robyn was on her way back from staying at Tom’s house so rather than just hanging about I decided to take off for a walk and get some miles in until she came back and could let me in!

I got back just a couple of minutes before Robyn did. This gave me time to take some photo evidence of the starlings that have decided to make a nest in the eaves of our house, right next to my bedroom. They have been waking me first thing in the morning for ages now, they are SO noisy. I would love to be able to see their nest and see just how many are up there, it literally sounds like twenty or thirty! It was scaring me a bit, I was thinking they were all in the loft space and I couldn’t bear the thought of the mess they would have made. (I sent Jack up to have a look one afternoon!!! Thankfully there was no sign of them whatsoever 😀) So I guess I just have to wait until they all decide to leave now, and then get the hole filled in quick so I don’t have all the early morning wake up calls next year!!!

(I found my keys by the way, it seems I had them all the time, just in a separate little bag which I didn’t think to look in 😳)

A visit to Stratford upon Avon garden centre in the afternoon and then as it was so lovely we went for just a little walk down by the river too.

Then back for a yummy barbecue!

Monday – Over the weekend I had been trying to carry on as best as I could and I just kept making myself do things, but I had still been feeling so unwell and I had completely had enough of it. I decided that I would go and sit and wait to see a doctor at the drop in clinic at the health centre, something I would not normally even consider doing. I know I already had my ‘Shingles’ virus going on but it doesn’t make me feel like this, this was something different. I told the doctor that I thought I had a flu like illness because that really is what it has felt like. (I have had Flu before, a few years ago now before my transplants, and I actually ended up in hospital with it, my already poorly liver couldn’t cope with it 😕) Anyway the doctor checked my blood pressure, temperature and listened to my chest. She said she thought it sounded okay but to be on the safe side she wanted me to go and have a chest X-ray. She did also agree with me that it did look and sound like I probably do have a flu like virus, which can really make you feel quite unwell.

So now I needed to make a special trip into Banbury to get this X-ray done. It takes longer to drive there than it does to have the actual X-ray taken, it’s literally over in a flash. 

A trip into Costa for coffee and cake. 

Then time for a walk. I thought I would do something a little different and I decided that I would try and walk from one retail park to the next! I got a little way but then the path decided to move away from the side of the road. As I wasn’t sure where it was going to take me and it looked like it might get a bit deserted I thought maybe it wasn’t such a good idea. So I retraced my steps and eventually took off through Beaumont Road Industrial Estate and walked all the way through it until I got back to the main road. What an exciting walk that was! I did over 2 miles though!

Later in the afternoon I suddenly started to have a cold! Bloody hell what next! Sorry for the detail, but for the whole evening my nose was literally streaming, it was just like a tap had been left on, it was unstoppable 😫

And then my right eye decided to go red and puffy too and my right cheek was red and burning 😕 What is happening to me?

What a lovely photo!!! 😂

Tuesday 9th to Friday 12th May

Leah had planned to have this week off before she started her new job on the 15th so I booked the days off from work too.

I had my last B12 injection on Tuesday so I combined my walk up to the surgery in with a nice afternoon walk.

Then on my way home I called into the salon where Robyn was doing Leah’s hair for her. I was lucky enough to get a cup of tea and some cake even though I wasn’t the client 😱🤗😋

I had a real sore throat ☹️ (I had already noticed just yesterday that I had my Shingles related virus yet again 😥)

Back out for another walk with Leah later in the afternoon 👣

I spent Wednesday pottering around in the garden as it was another nice day.



I wish I could say that I had done something wonderful and creative like these pictures above which I found on the Internet, but sadly not. Good ideas though aren’t they?!

And then this time a walk with Gary later in the afternoon. (My throat was still so very sore).

I woke up Thursday morning with my whole body aching. I didn’t feel brilliant at all. I soon developed a headache too. I couldn’t go volunteering obviously (not a good plan to take whatever I was suffering with to the already poorly patients) so what did I do? Lay on the sofa and rest? No. I decided to go to the tip as Leah was around to help me. So I sorted the things out of the shed that have been waiting to go for ages. Let me tell you it was very hard work for me to help carry it down the path and load it into the car. My body was struggling A LOT 😖

It was worth it though as it was SO good to get rid of all that broken rubbish!!!

And then stupidly I still made myself go out for our Thursday evening walk – 3.66 miles 😳

I had an appointment for yet another blood test on Friday morning (requested by Birmingham) and then Leah and me set off for the John Radcliffe hospital. Thankfully for once there was no appointment to attend. Leah was having an induction day there on Monday and I was showing her where the rooms were that she needed to get to, just to make it a bit less stressful for her on Monday morning 😕

A Friday evening walk 👣 I was really pushing myself. Needless to say that when I got home I did not feel that wonderful!
I still had this awful headache, aching and didn’t feel at all well. Why do I even have to be ill when I am on holiday from work? Am I not allowed just a little break from all this constant illness? It seems not.

By the way, as a result of one of my many blood tests, the amount of tacrolimus I need to take has now been put back up to 2mg twice a day.

Monday 8th May

Happy Birthday Leah 🎉

I spoilt her with a breakfast of toasted waffles which I served with strawberries, raspberries and chocolate sauce!

And in the end I had been successful in finding us something nice to do today. We were going to a spa 👙and having an afternoon tea ☕️🍰 It was only myself and Leah going as it was a work day for the others and Robyn had her course to attend in the afternoon.

We had a good day. We did some swimming, had a sauna, went in the steam room, spent lots of time in the jacuzzi and had a full body massage. Lovely 🤗

The only thing that let it down slightly was the afternoon tea. I was a bit disappointed with that 😟 

There were only two small sandwiches each, which really weren’t the best, the scones were okay, but the cakes I’m sure were just bought from a local supermarket’s cheap range, they really weren’t very nice. 

A real shame because the rest of the day was just perfect 👌 

We went back to Julie’s where Robyn had prepared a few nibbles –

and then there was birthday cake 😋

I wonder what present Leah received when we finally got back home? 🤣

 

I hope you enjoyed your day of pampering and presents Leah 😀

Saturday 6th to Sunday 7th May

I actually got up early and went food shopping with Leah this Saturday morning 😱 Home to do a couple of little jobs then I went down to my sister Julie’s house to see what everyone was doing there! They were bird watching it seems 🦅 Hannah’s new obsession! 🤣 And then we all seemed to be just sat waiting for baby James who was coming to visit and stay for the night 😍 Who’s going to be lucky enough to get the first cuddle I wonder?! 

A nice sunny Sunday. A trip into Banbury, which I didn’t particularly want to do, but I needed a couple of last minute presents for the birthday girl! so off we went. Least I got to have one of Gary’s delicious barbecue’s later, while I did lots of present wrapping 🎁 I also spent quite a lot of time trying to do some last minute planning as to how we could spend the special day tomorrow. I wasn’t very successful, aaaargh 😑 (Sometimes I wish I was more organised!!!)

Just to keep you up to date with things, as the bleeding had started again and was getting heavier I had just decided myself to start taking more of the hormone tablets as I didn’t want a repeat performance of what had happened to me a few weeks ago. I still hadn’t heard anything from the consultant, trying to get to speak to anyone from my doctor’s surgery is a complete nightmare, so I decided to treat myself!!! So at least the bleeding has stopped again now and I can carry on with a ‘normal’ life until someone decides to get in touch with me and gives me some answers on what needs to be done 🙃 (Probably not the right route to go down but that’s what I’ve done).

And on a slightly different subject, I have also noticed that the swelling in my legs seemed to have improved as well 🙂