Tuesday 16th to Wednesday 17th June

I spent Tuesday catching up with jobs around the house as I had stayed away all weekend and had a day out yesterday. I even decided that I was going to clean my oven! What was I thinking. Lots of bending up and down. I also sorted a few things in my garden and shed. Then as it was a nice evening I went for a walk around the town with Gary. My poor body at the end of the day was aching. My tummy still doesn’t like a lot of bending. I think I had done too much

On Wednesday I decided to take myself to Cafe Nero in the town. Sometimes it takes a bit of effort to get ready and go out, there is always some job that I should really be doing instead. I get fed up with being at home so I make myself do these other things to give myself a break.

Oh and good news – I think we’ve escaped from catching Tom’s bug 🙂

Monday 15th June

Happy Birthday Robyn 🎁

Well we made it. No one else has been poorly over the weekend or is poorly today. We can go on our planned day out and enjoy Robyn’s birthday.

I am a bit anxious as Tom is joining us too, but it has been a few days now. Hopefully he won’t be very contagious anymore. I can’t stay away from my daughter on her birthday as well

So me, Robyn, Tom, Leah, Julie and Hannah head off to Stratford-upon-Avon with our picnics, as it’s going to be a nice warm sunny day. We wander about in the sun, have our picnic (Robyn gets to open a few pressies), have a ride across the river on a tiny chain ferry, do some shopping, sit with a cup of tea and do some people watching and listen to a man singing with his guitar. We even managed to get him to sing happy birthday to Robyn which she found highly embarrassing!!

 Oh and we found a childrens play area …

We eventually went back to Julie’s for Robyn’s birthday cake …

a shepherds pie!! (That was what she asked for folks!) So we all tucked in, yumyum. 

My little baby girl’s now 23! Hope you had a good day Robyn 👩 

Friday 12th to Sunday 14th June

Robyn told me that when Tom was on his way home this morning, he was sick quite a few times. Even when he was actually on the bus – poor Tom 😦 But this left me with a bit of a dilemma. Should I be at home amongst the germs giving me a chance of catching it? Would Robyn now also be contagious? Two out of the three people I asked didn’t want me to be at home just in case. Especially as I think I have been doing so well. Don’t really want any unnecessary setbacks. It’s also going to be Robyn’s birthday on Monday, she has a few things planned for the weekend, we have a day out planned for Monday and I don’t want ANYONE being ill and spoiling that for her. This all really annoyed me very badly as I had quite a few things I wanted to get on with at home before the weekend and this meant they wouldn’t get done. Eventually I realised what I had to do and I got some papers together that would give me a few things to do while I was away to try and make me feel better and I walked to Gary’s. He was at work so I decided to do his bit of washing up for him. Such an angel! 😇 Now to sit down and start my paperwork. But then Gary walked through the door, he had decided to come home, so we went to a local cafe for lunch. I had a cheese and pickle sandwich, something very basic I know, it came with a lovely fresh salad and it was actually really nice. Then we went to visit his mum and dad in Charlbury. Had a drink and a chat with them. A nice day in the end but I was still very annoyed at having to stay away from home. 

What do you do in these situations? Do you go with it and hope you don’t catch the bug and just get on and cope with it if you do? I can’t always stay away in these situations can I?

On Saturday I needed to go shopping to get presents for Robyns birthday, so we went to Oxford. We went into a massive sports shop where Gary decided to look at the exercise bikes. He has been thinking about getting himself one for a while now, maybe he’ll soon be doing this 🚴 !!

Sunday was a bit more of a lazy day. Even had a takeaway in the evening – vegetable korma, yummy!!!

So a weekend away! But some moments 😊 some 😳

Wednesday 10th to Thursday 11th June

Robyn was doing my hair at last 💆 It hadn’t been touched since before my transplants, so badly needed doing. I walked along to the salon. Cup of tea and the colour was put on! Robyn had organised herself some food (not unusual) but I actually did too (very unusual), and we sat and had an inside picnic there while the colour was taking! Then a good cut 💇 and it feels so much better now.

On Thursday I went to my friend Sally’s house. We have known each other for years and years. When we were children we lived two doors away from each other. And now our own children are similar ages and played and went to school together! It was another warm afternoon so we sat out in her garden. She had her little granddaughter there for a bit, Evie-Rae who’s 2. Very cute. Then her dad came to pick her up. 

Sally had some lovely decking in her garden with nice comfortable chairs, sun umbrella and fancy lights. Put my garden to shame, it’s a bit of a wreck. I am trying to tidy it up a bit while I’m at home and when the weather’s nice but there’s only so much I can do. My tummy still gets sore if I do a lot of bending and I can’t really lift heavy things. So it’s a bit of a slow job and I do get cross! My landlady is getting me a new garden path laid now as its a bit of a dirt track at the minute. So hopefully when that’s all finished that will inspire me a bit more too 🌱🌺

After sitting out for a while longer, we then walked down the road to Evie-Rae’s house! She had a lovely garden too with all her little toys in it. I’m very jealous of these gardens!! She was playing in her paddling pool. Sally said to me ‘it doesn’t seem that long ago when we were doing this with our kids’. Wish we could go back to those times. We did some great things and had loads of fun. Guess I have to wait for my own grandchildren now. 

Back home for something to eat.

Just want to say that we’re all thinking of a friend that has had to go back into hospital. 

Hope she gets better real soon.

Monday 8th to Tuesday 9th June

Back at home today. But I was very frustrated, I just couldn’t seem to get on with anything. Robyn was home as it was her day off from work but as I had no clinic appointment she had booked her own appointments and was in and out with those keeping herself busy. She went to the local leisure centre and had a massage and to the beauty salon and had her nails done 💅  In the evening yoga. A lovely pampering day for her. But you deserve it Robyn 😜

On Tuesday I had arranged to meet my brother Peter. When he visited me in the hospital we agreed that when I first came home we would go for coffee and jokingly we would stop at every lamppost on the way to the cafe and I would do some squats to strengthen my leg muscles. Of course this never happened! But we did meet today and had a good natter. After, I carried on walking into town and took some of my old tablets I had sorted out into the pharmacy for them to dispose of. I’ve got hundreds as most of the medication I was taking before transplant has now stopped. I dread to think of the cost of it all. But there’s nothing else you can do with them. They won’t reissue them, even though the packets are unopened. I then met about 3 other people along the high street who I hadn’t seen since my transplant, so stopped and had a chat with them. 

When this happens I realise that I miss my job for that reason, I miss all my regular customers. I work on the checkout in the local supermarket, which suited me in the years before I became really ill, as I didnt have to use my brain too much. With the confusion going on in my head and hospital appointments and tests here, there and everywhere, it helped to do a job that didnt take too much thought or have too many responsibilities. Its time now to maybe think about going back, but i really dont know what to do. Some people tell me yes get back to it, others say don’t do too much too soon, that obviously confuses me even more. I would also love to train as a counsellor or something health related but I just don’t know what or where and you also don’t get paid for doing that! In my crazy days in hospital, and when I had tubes and wires everywhere and couldn’t talk and I was too weak to even write with a pen, one of my ‘thoughts’ was that I was going to invent something when I recovered. It was like a touchpad and patients could just press certain preset buttons to communicate with the nurses and doctors and even your visitors, telling them what you needed/wanted!

Maybe inventing will be my new career …

Saturday 6th to Sunday 7th June

I stayed at Gary’s this weekend.

We went into Banbury to look at lawnmowers and ended up having a pizza! It was good though. Vegetarian one for me with spinach of course for my iron intake!! We did look at lawnmowers too. There was an offer on in Homebase for a mower and a strimmer, both of which I need really. But as always I didnt buy them When we got back Gary decided he was going to have a go at my grass with his own lawnmower as Jack hadn’t been very successful. Now i have hardly any grass out there, he killed it 😧

On Sunday we went to look at trains at Didcot Railway Station!!! 🚂 Woohoo. Gary’s an ex trainspotter can you believe? There was a transport rally going on so there were some old cars and buses on display too. Good job it was a warm sunny day as that made it okay to just wander about anywhere really! And I got to have a 99 with a flake 🍦 We did get to have a tiny ride on a steam train though, that was good fun. And we got to ride on an old fashioned double decker bus which was fun too.

Emma (Gary’s daughter) and her boyfriend Jamie came round when we got back. It was Emma’s birthday the next day and they had spent the afternoon making cakes for her tea party. I was lucky enough to be given a couple. Yum. 

Went out for dinner and a drink in the evening.

Weekend over.

Wednesday 3rd to Friday 5th June

I met my friend Kate in the town for a cuppa on Wednesday morning. We had a lovely chat.

The phone rings. My Prograf dose needs to change to 4.5mg twice a day. Have I got any .5mg tablets? No. Okay then we will send some out to you but until they arrive take 4mg in the morning and 5mg at night. 

Three telephone calls from them this week!!

As it was a nice evening Robyn decided she wanted to go for a walk. She invited Julie and Hannah but they were being lazy and wouldn’t come! So me, Robyn and Leah set off with Jake our dog. He’s getting old now, some days he’s fine and some days his legs give up on him. This was obviously one of those days. We didn’t get very far so took him back home. Poor thing. Leah stayed home, me and Robyn continued our walk for a bit longer.

Thursday was spent doing jobs. It was a warm sunny day so I found some things that I could take outside to do in the garden. 

I had agreed to go for a walk 👣 in the evening with a group of friends. They go every week and before transplant I had started to join them, but as I became more ill I just couldn’t manage it. Even a simple thing like a walk around the town I just couldn’t do. I was way too tired at that stage, or had lots of fluid in me or had some kind of pain or illness. So now I had decided that it was time to get back to it. I had missed it and the company. But as I had been quite busy and on my feet most of the day, my body was quite tired and aching, I didn’t think I would make it round and it probably wouldn’t have been good for me and I would have suffered afterwards. I was very annoyed with myself as I hadn’t planned my day too well had I? I should have had an easier day so that I could have gone out 😡 

I was still very frustrated with myself, I couldn’t settle and it was another lovely evening, so I asked Jack if he would get the strimmer out of the shed and attack my rather long grass which was out of control. The plastic wire bit that actually cuts the grass kept snapping off, it just wasn’t up to the job, so he stopped. That made me even more frustrated. When was it ever going to get done? 

Aaaaaargh!!!

Friday afternoon I walked to my friend Jackies’s house and had a cup of tea with her. I even had a chocolate biscuit (naughty me!) …

Tuesday 2nd June

The phone rings. Can I stop the steroids and the Valganciclovir please. No I can’t stop the steroids, they ask me to do this every week and every week I say to them, I was taking the steroids before transplant so I cannot just stop them. Oh yes that’s right they say, continue with the steroids then! Good job Dr Pinny’s on the ball now!!

I have an appointment at 1.30 today for my Personal Independent Payment application (used to be Disability Allowance) which I applied for back in November when I had to give up working. I asked Hannah to take me as she has the day off on a Tuesday. We were planning on going to the garden centre first for a look around and some lunch, then we decided that the timing wouldn’t work out so was just going to go to the appointment. So I decided to be good and do some jobs in the kitchen before I went out. Then I got a text from Hannah saying shall we go at 11.30?! Oh no less than half an hour to get myself and the paperwork for the meeting ready. Oh yes let’s go anyway Hannah, it’s good to get out. 

Not sure how the appointment went. Basically I think they base it on how your illness affects your day to day life, but it’s not the fact that you can’t wash or dress yourself or cook for yourself or deal with paying the bills etc. You just get on and do all those things when your living with an illness rather than a disability don’t you? It’s more the fact that you are suffering with the extreme tiredness (well I was, that’s what goes with PBC unfortunately), amongst other things, that no one else understands unless they are going through it themselves, and it is this that makes life difficult. So although now I can do most things for myself again, I couldn’t when I first came out of hospital or before my transplant, and because it takes so long to get the appointment through, I think most of my answers were coming out positive and I felt like I shouldn’t have been there really 😳 Oh well, we’ll just have to wait and see what they decide.

The phone rings. Can I start taking my aziathioprine again. This had been suspended because my white blood cell count was low and this may have been not helping it. The dose was to be different. 75mg now.

After they ring me I always feel a bit odd. I think it’s because I’m just trying to get on with my life and then I get a bit of a reminder, hey hold on your not completely better yet, and it brings it all back to me.

Monday 1st June

It’s June. Already?! How did that happen? I suppose quite easily when you have spent over a month in hospital.

So off to clinic today as I couldn’t get there last Thursday. Robyn was taking me today as Monday is her day off from work anyway, so no extra time off needed. Tom was coming with us too. As it was an afternoon appointment we set off, picked Tom up on the way and first went into the Sainsburys that is near the hospital and got a bit of shopping. Shopping with them two was quite an experience, all three of us going separate ways and buying completely different things!! Then we went across the road to Frankie & Benny’s for our lunch. I had just a plain Margherita pizza but it was really quite nice. 

Then to the Queen Elizabeth. We were a bit late, whoops, but it really didn’t matter because we ended up waiting the longest we ever have before, and the waiting room wasn’t even full which it normally is, so I don’t know what the hold up was there. I saw a completely different doctor who I didn’t recognise, but he said he had looked after me a few times when I was in hospital. Must have been during my many crazy days He was the first doctor that I’ve seen in my clinic appointments that has asked to look at my scar and feel my tummy. I was still doing okay. My blood was taken – another wait for the phone call tomorrow to really find out how I’m doing. 

Before we left I gave my two donor family letters to the coordinator. They pass them on to the donor family’s own coordinator and they do not send them until the family are ready to receive them. They may even decide that they do not want to receive a letter at all, in which case it is returned to you. But I do hope my families want to see mine. I had decided that I would write to them on my new liver’s 3 month anniversary, which was also the 1 year anniversary of when my mum had died. Tough letters to write, but I think (and hope) they will be okay. 

Luckily I wasn’t due to see the dietician this time. My weight had just stayed the same, so quite glad there was no appointment really because she would only have been trying to feed me up a bit more! I did miss not doing my strength test though. I do like to see if I have improved with that, or not.

So at last, back to Chippy we could go.