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 … 🤞

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 😏)



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 ☕️🍰

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.



Saturday 18th to Sunday 19th March

This Saturday afternoon was mainly spent by me grovelling around in our loft (hurts your knees that does!) I was making some space so that we could transfer boxes from Gary’s loft to ours. When we had to move for the first time in 20 years in 2014 (that was another really horrible experience to go through 😟) we were having to rent a smaller house and also were not allowed to use the loft space there so we needed to find other storage places for some of our boxes. It was mainly Robyn and Leah’s things that I had kept from when they were little. It was fun to be able to have a quick look through before we stacked them back up into the loft again. Brought some memories back 😶

This was followed by a late afternoon trip into Banbury, where we seemed to eventually end up in Pizza Hut! 🍕

On Sunday we went for, what is getting to be a bit of a regular, family walk 😂 Myself, Leah, J&H today. I took them on a walk similar to one that I had recently been on with a friend a few weeks before, we passed the garden centre on the Banbury Road, through fields and woodland which eventually brought us out into the nearby village of Over Norton, then we made our way back through some very muddy places

and through the cemetery (so we said a quick hello to mum and dad 😰) and back up into our town where we were due to meet our other sister Lynda in Caffè Nero for a catch up ☕️ (and when Robyn had finished her gym session she joined us too, obviously not wanting to be left out of anything that might be going on!)

That weekend was soon over ⏱

Thursday 16th to Friday 17th March

Because I had been out all day on Monday and I knew I was having a busy day tomorrow, I didn’t make it into volunteer this Thursday. I had many jobs that needed to be done and some odd jobs that I needed to get sorted in town. Then I walked to our just out of town supermarket to get a couple of extra miles in for my walking challenge and called in for a coffee at Nero’s on my way back through the town. A lady came over and sat by me and started talking. She said she had recently moved into Oxfordshire from Birmingham and she said she had gone back to visit for the day on Monday. I asked her which part of Birmingham – it was Kings Norton. I explained that we had driven through there on Monday as well when we were on the way to the Queen Elizabeth Hospital. She then said that her daughter was a nurse in one of the operating theatres there! Can you believe that? Small world 🌎

Evening walk.

(Update on our friend Alex – We had heard that she was having some problems since we saw her on Monday. Thinking of you Alex, you can do this 💪)

I started work at 9am this Friday so that I could finish at 1pm, which would then give me a bit of extra time to get home, get ready, pick up my car and drive to Oxford as I had an assessment meeting to attend for an allowance that I receive.

Its easier to use the Park & Ride to get into the City Centre. So I was on the bus on my way into Oxford when I received a phone call from the Advisory Service to say they were running late with their appointments and I might not get seen today! Oh right, what was I supposed to do now? I was already travelling on the bus. So I decided to carry on and make my way to the Assessment Centre and was prepared to wait to be seen. I waited for an hour, then the receptionist came out and told me that in fact the assessor was still writing the report for the previous appointment and it was definitely not going to be possible for me to be seen today. I couldn’t quite believe this as they state clearly on the letter how very important it is that you attend. Couldn’t the assessor continue with my appointment as arranged and then write the reports later?! Obviously not.

So annoying. I had changed my working hours and made the effort to get to my appointment as they had requested. And now I’m just going to have to go through it all again when they send me the next appointment through. How much extra costs have they made for themselves? Double the travel expenses which I think I can claim for a start 😤

I got back just in time to have a very quick shower, got ready and then went straight back out to our local theatre as Gary wanted to go and see I’m sorry, I’ll read that again. I had never heard of this before or had any idea what it was all going to be about 😏 but it was nice to have a different type of evening out.

Look at this. Taihang Grand Canyon in Linzhou, Henan, China. I would like to climb it! It’s a national tourist spot. Its famous cylindrical ladder is 88 meters tall.

Wow 😳

Monday 13th to Wednesday 15th March

Monday. Clinic day. Robyn was taking me to Birmingham today 🚙

It was a nice day. I managed to persuade Robyn to come for a bit of a walk around the outside of the hospital with me, but then she got a bit tired and fed up with it so she went to find and save our usual ‘picnic bench’ inside the atrium while I carried on walking for a little bit more! Lunch on the picnic bench. Then we had a very quick meeting with the QE fundraising lady, as hopefully she might be helping to promote my #walk1000miles challenge.

I have set up a Justgiving page now, as I thought I might as well try and raise some money while I am doing all this walking anyway. If you would like to help me and donate to Queen Elizabeth Hospital Birmingham Charity click on the logo that you can see in the column to the right of my blog. That would be just great 🙂

Time for my clinic appointment. So my liver’s doing well. My consultant was pleased. Apart from the one result, which seems to have responded to the Ursodeoxycholic Acid tablets I now take, which also kind of adds to the fact that PBC may be back It’s now the medication I have to take which seems to be causing me my problems. The tacrolimus I have to take to suppress my immune system so that my body doesn’t reject my liver, is upsetting my kidneys. I think as a result of that my blood pressure is high. I am taking Amlodipine to lower my blood pressure, but this now seems to be causing my legs and feet to have fluid retention, which is uncomfortable. I have too much uric acid in my blood, this may be because my kidneys are not filtering enough of it. I take Allopurinol to try and help with this. Too much uric acid in your blood can lead to gout, which is maybe the cause of the pain in my feet. Nerve damage was also mentioned as a possible cause of this, and there is a test that can be done for this which I may have 🤔

So – I have to change my blood pressure medication in two weeks time to Losartan Potassium to see if this stops my fluid retention. Then I have a separate appointment with a kidney consultant coming up in April, it’s all timed so that they will be able to then check how my body has reacted to these tablets, see how my blood pressure is doing, and I guess they will be able to tell me in much more detail just how my kidneys are doing with everything. So it seems like I just have to put up with my fluid and foot pain for a bit longer (not easy when you are trying to #walk1000miles 😳) and I just need to keep taking the Urso and hope that it keeps PBC a little more under control for a bit longer too!

Thank goodness it was now the time we had been waiting for all day. We were going up to the ward to see our friend Alex, who has just had her third liver transplant. She was in hospital at the same time as me, and unfortunately has become so very ill in the two years that have passed that she already needed another new liver 😫

It was good to see Alex looking so well. I think I was still down in intensive care a week and a half after my transplants 😏 It was just great to see her.

Back down to pharmacy to pick up my tablets and then we could finally head for home. A long day.

Tuesday, work. Then I walked down to my friend Jackie’s house to have a cuppa with her ☕️ and I finally got to give her birthday present. Then after a while we ended up taking her dog Alfie 🐶 out for a little walk too.

Wednesday, work again! A sunny walk with J&H and today Leah was able to join us too. She wasn’t at work today as she had been on important business! More on this to follow at a later date …

Dog blood donors needed. Yes, really! Have you ever thought about this? I know I haven’t. Pet Blood Bank – ‘Similar to the human blood service, dog owners kindly bring along their much loved canine companions to give blood at one of our many sessions across the country’.

I 😍 this. Urm – Robyn???

And these –

are drawings 😱 Very clever.

Thursday 9th to Sunday 12th March

A piece of artwork was being opened this Thursday in Gloucestershire Royal Hospital to recognise the generosity of organ donors and their families. I had been invited to attend this ceremony as my ‘thank yous’ to my two donor families, I am very chuffed to say, had been chosen to be included 😀

As it was my usual volunteering day (and a bit of a journey to get there) I felt I wasn’t really able to attend. I wasn’t really happy at all with that decision. I do hope I can get over to see 1000 Thank Yous some time soon as from what I’ve seen I think it looks great.

When I got back from Oxford later in the afternoon I joined J&H for part of the walk they were doing, then I came back, had a quick snack and then went back out again for my evening walk.

Friday. Just work.

My feet were really hurting a lot this morning while I was sat on my checkout. I guess I had walked 7 miles yesterday which probably didn’t help. But sometimes they do seem to bother me more than others 😖

You may remember that last year I went to a couple of meetings with the local PBC group. One of the lady’s from there came into the shop this morning (her daughter actually lives in my town!) She seems to be one of the lucky ones though as she has hardly any side effects.

‘PBC is a progressive condition, which means the damage to the liver can get steadily worse over time. The rate at which PBC progresses varies between individuals. In some cases, it can take decades.’

And my version of it led to transplant! 😱 Strange isn’t it?

There was a visit from baby James to look forward to later today though. He is just the cutest baby 👶 😍 Here he is all snuggled up in Leah’s bed!

By the way, do you fancy some stir-fried ice cream?! 🍨

Saturday ended up with an unexpected trip to a garden centre. That’s what happens when you go out for a drive, just for something to do for an hour or two 🙃

Then it turned out to be a curry Saturday. I can’t tell you just how delicious it was. Green beans in mustard seeds, sweet potato in the curry itself and this time garlic mushrooms too 😋😋😋

Sunday was another family walk, even with Robyn too this time. We started off by walking along the side of the main roads outside our town, which is not great. The cars go SO fast. There are paths to walk on but they are right next to the roadside so when the big lorries go past you almost get sucked in! At last we made it to the much nicer part of the walk, along part of a footpath called the Saltway (an ancient track) which passes by the edge of the local golf course and Glyme Valley Nature Reserve and then back down Glyme Lane into the town. 5.89 miles. Here we all are looking oh so glamorous 😏

In the evening Gary treated me to a roast in Bitter & Twisted. I chose the shoulder of lamb which came with roast potatoes and green veg and a sweet potato mash. Absolutely lovely it was!

Blimey I’ve eaten well this weekend!

On our way home we saw Robyn sat with her friend Kayleigh in another pub, so we called in and gatecrashed their peaceful chat! Sorry 😐

(Some of my 50th birthday photos have now been uploaded on to my Photos page for you to have a look at if you so wish 👀)

Monday 6th to Wednesday 8th March

Guess what time my appointment at the dentist was this Monday?

2.30 🤗 Yes it seriously was. 🤣🤣🤣

I was very scared to go as I haven’t been for a long time and I am scared of having appointments with anyone now which may end up with them having to give me some kind of treatment that will hurt 😏 Thankfully I had Leah to arrange my appointment, she booked it for the nicest dentist and made sure she was the nurse for that day so she could look after me! Good news – it turned out that everything was fine.

So I combined this trip with a long walk around and about the town, a quick Caffè Nero visit and got back just in time to meet Julie and Hannah to go straight back out for another walk! where we came across these lovely pigs 🐷 that came across to see us and were very keen to pose for pictures!

And after a morning at work on Tuesday, back out again for another walk with them, 5 miles this time 🤗 (I think J&H have now decided to join up to #walk1000miles too 👣)

Wednesday was a day off from walking, and from work too! I went over to visit my friend Deb who lives in Banbury. When Robyn and Leah were much younger I was a childminder. I used to look after no end of children at various different times and days. It was hard work but a lot of fun. I looked after Sian (Deb’s daughter) from when she was a tiny baby. I think it was from 8am to 6pm, so at the time she became part of the family really. Sian is now at college!!! Anyway it was nice to catch up with Deb ☕️

Could you do something amazing like this man, who donated a kidney to a stranger. They are now best friends and meet up regularly. Brilliant 🙂 

We only need 1 kidney and we are born with 2. Why not ‘share your spare’?

Saturday 4th to Sunday 5th March

There was no walk happening this Saturday ☹️! I went shopping, bought a pine bookcase and saw a rainbow! 🌈

But on Sunday I managed to get Leah, Julie, Hannah and Gary all to come out for a walk with me 🤗 Three and a half miles we did!

We did get very, very wet.

But then finally the sun did come out.

We walked down to the old Bliss Tweed Mill which is in our town (my mum used to work there years ago but it has now been converted into apartments), along to Pool Meadow (we used to spend lots of time there with friends in the school holidays when Robyn and Leah were little, playing in the stream and eating picnics in the sun), then up around the back of St Mary’s Church and into town, where we all trooped into Caffè Nero (a bit damp and rather muddy) for a well deserved mug of tea ☕️

Myself and Gary then followed this by going to listen to some live music in a hotel in a nearby village. We even had a very quick game of Pairs while we were sat there as someone had left a pack of cards on the table! We had a nice evening.

Just to say that Dr Thomas Starzl has very sadly died at the age of 90. Starzl performed the world’s first liver transplant in 1963 and the world’s first successful liver transplant in 1967 (the year I was born!) Thank you Dr Starzl 😀