Monthly Archives: April 2017

The missing week

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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  :/

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Sweet potato wedges

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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 ☹️😡😴

🦆 race

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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.) 

Ouch 💉

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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 …

Blood

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Sunday 9th to Thursday 13th April

It is Thursday morning and I am writing this blog from my hospital bed in the John Radcliffe Hospital.

I think I need to update you with what has been happening.

On Sunday morning I woke to heavy menstrual bleeding. Ok – EXTREMELY heavy menstrual bleeding. This carried on and on and on, non stop throughout the day. I was getting very fed up with it but was trying to cope. It was a lovely, very warm and sunny day, a bit unusual for this time of year. Leah had gone out for the day, I would have liked to have been pottering around in my garden but I just wasn’t able to do that. Later in the day I went and sat in Gary’s garden and watched him starting to make his own ‘raised planter’. A bit of a tasty barbecue 🍢 (and the heavy bleeding continued) 😖 … all through the night. 

Monday morning. Still bleeding. Surely this must be starting to feel like easing? But it wasn’t. I rang the GP surgery to ask for a call back from a doctor. She told me that nothing could be done really, I just needed to put up with it. Hmmm, I wasn’t too happy about that but just tried to carry on with my day. 

As it happened I was due to go up to the surgery in the afternoon anyway as I had changed to some new tablets 2 weeks ago and I needed to have my blood pressure checked to see if they suited me and were working properly! But by Monday afternoon I was starting to feel dizzy and unwell. I rang to say I wouldn’t be able to get to my appointment and explained the reasons why. A doctor rang me back to say I should be seen really, my blood pressure needed to be checked, but now for a very different reason, because of all the blood loss! I asked my sister if she could give me a lift up there when she finished work. One of the practice nurses took my blood pressure, it was very low. I had to wait to be seen by the doctor who then decided that I needed to go to A&E at the John Radcliffe.

So I went home, packed my bags and when Leah came back she took me to the hospital. 

Our Monday evening was spent in A&E.  My blood pressure was taken again there, it was very low, and I was feeling dizzy. It wasn’t long before I was shown to a bed and then a little while later I was taken up to the Gynae Ward.

And this is where I have been ever since …

I have been given bags of intravenous fluid, I have had an ultrasound scan, blood transfusions (three bags :/) and still my hb level is low. I have been given an iv drug to stop the bleeding (which didn’t actually stop until Wednesday afternoon) and some separate hormone tablets. After my first bag of blood I developed a temperature, they were a bit worried about an infection and so they started me on iv antibiotics too. I then had an X-ray so that they could rule out a chest infection.

I have had a biopsy taken of my womb lining to see if that gives any indication as to what may be happening. The word ‘menopause’ was mentioned but the doctor did tell me that their first priority was to look after me, as I had lost A LOT of blood, my blood pressure was very low, and I was still bleeding.

I have been hoping to write a blog post before today but unfortunately I just haven’t felt up to it.

Trust all this to happen while Robyn is away on holiday in Brazil ☹️ (sorry Robyn) so poor Leah has been left to deal with things, cope with and look after me! Gary has also visited and my sister Lynda, so I have been lucky in that way as always.

So now it’s Thursday night. And I am a bit fed up 😖 There was a possibility that I may go home this evening, but as always it hasn’t happened. My blood pressure is still a bit low. My hb level is still low. There was talk of a fourth bag of blood but hopefully their minds have now been changed and I can go home with iron tablets. My other meds have now also been changed from iv to tablet form in preparation for my escape! But they then decided that they wanted to check my liver blood results to make sure everything is fine there as well before I can leave.

So now, yet again, I have to wait for more results tomorrow … 🤞

Hurting toes

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Monday 27th to Friday 31st March

Apart from on Monday, when I didn’t walk at all, this week was mainly spent walking 👣 I did two separate walks every day and three walks on Thursday!

I also met Robyn in Banbury for a spot of shopping for her holiday, went to work as usual, met Jackie for a cuppa, went to volunteer, oh and did some of the never ending household jobs.

By the end of the week I was aching. I was tired and the big toe joint on my left foot was hurting.

A LOT 😖

(I decided to change back to my normal work boots as my broken toe finally seemed to be getting a little better. But they have a bit of a short chunky heel on them. I guess this made my feet walk in a slightly different position! and this made my big toe hurt even more on my Friday walk to work 😏)

Steep hill

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Saturday 25th to Sunday 26th March

A trip out to Millets Farm Centre this warm sunny Saturday. Myself, Gary and Leah too 😀 as she was at a loose end!


We watched a flying display 🦅, visited the birds!, went in the farm shop (where unfortunately I didn’t buy any of the great looking pick n mix. I bought, what turned out to be, very boring biscuits 🍪☹️ and some brownies) and of course we went for, a little part, of their woodland walk 🌳 We also had a look at the few animals there 🐐 and a wander around the garden centre!

Mothering Sunday. Certainly not a relaxing day! A walk had been planned which started at Upton House. We set off from the car park, across a couple of fields, but we very soon got lost 😏 We went through thick mud, lots of gates and stiles, many fields, but we didn’t have a clue where we were. We couldn’t see any of the landmarks that were mentioned on the map! We were all getting tired and some were a bit fed up I think. Then to top it off we came across a very steep hill in the next field which we realised we needed to go up, it WAS a struggle, a bit of a mountain climb, we had a quick breather about halfway up then started off again. We came up to a lane where we then worked out that we had turned left instead of right quite near the beginning of the walk!!! Thank goodness it was another nice day, which perhaps made it a bit more bearable.


Here’s the map of the walk that we didn’t do! If you fancy it hopefully you will be a bit more successful than we were 😳

The next disaster was the meal. Because the organisation of it had been left a bit late apparently there wasn’t many places left to choose from that could fit us all in at a suitable time. The pub that was chosen wasn’t the most desirable of places :/ We went in. Our reserved table was set almost in the middle of the bar, a high table with stools! None of us really liked the look of it, we didn’t want to be the pub’s entertainment for the afternoon! so we just walked back out (yes, it was naughty of us I guess).

Now where to go? Someone came up with the idea of Pizza Hut so that’s where we headed off to. And it was really quite nice. I had a pepperoni pizza 🍕 and I ate the whole lot of it which is most unusual for me. Maybe the stressful walk had given me a bit more of an appetite!

Back home for a cup of tea and a slice of the cake that Robyn had bought for me and Julie ☕️🍰

Little cakes 😋

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Monday 20th to Friday 24th March

This week just seemed to consist of spending the usual times at work and then just walking whenever I could. I had some nice walks 🙂 I went out at separate times with Julie and Hannah, Jackie and Alfie and also Leah!

Hannah made me some little cakes this week, which were just the most delicious things 😋 (please can I have some more of these sometime very soon! 🍰)
I had a visit to Caffè Nero with Jackie and a quick trip out to try and find a place in Oxford where Leah needed to drop some paperwork off!

But I didn’t feel quite ‘with it’ in the middle of the week. I was even more tired than I usually am, SO tired and my whole body was aching. I also had problems with my concentration! I felt like I was in a bit of another world. I hate it when I feel like this 😫

Then later in the week I found one of my ‘Shingles related’ outbreaks, so maybe that was why I was feeling so odd 🤔 

Just makes everything so much harder to cope with.