Monthly Archives: May 2017

Poorly 🀧

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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’ πŸ™ƒ

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 πŸ˜‰)

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Starlings

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Saturday 13th to Monday 15th May

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

Then an evening meal πŸ˜‹ 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 πŸ˜€) 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 πŸ˜•) 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 πŸ˜• What is happening to me?

What a lovely photo!!! πŸ˜‚

Week off

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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 πŸ˜±πŸ€—πŸ˜‹

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

Back out for another walk with Leah later in the afternoon πŸ‘£

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 πŸ˜–

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 πŸ˜•

A Friday evening walk πŸ‘£ 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.

Spa day

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Monday 8th May

Happy Birthday Leah πŸŽ‰

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 πŸ‘™and having an afternoon tea β˜•οΈπŸ° 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 πŸ€—

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 πŸ‘Œ 

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


and then there was birthday cake πŸ˜‹

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

 

I hope you enjoyed your day of pampering and presents Leah πŸ˜€

Hormone tablets? 😏

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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 πŸ¦… 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 πŸ˜‘ (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 πŸ™ƒ (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 πŸ™‚

Fast walk

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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 β˜•οΈ 

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 πŸ₯ I really hope she will be okay in her new job 😏

No walk πŸ˜­πŸ˜‘πŸ˜–

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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!! πŸ•πŸŸ

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! πŸ™ƒ

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 πŸšΆβ€β™€οΈπŸšΆβ€β™€οΈ

Lost iPadΒ 

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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 πŸ‘

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 β˜•οΈ 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 πŸ₯€

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 πŸ€—

April snow 🌨

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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 πŸ€·β€β™€οΈ 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 πŸ“–