Monday 18th May

Robyn had an appointment in Oxford today (for once it wasn’t me) so I went with her, just to have a drive out really.

Afterwards we then went to Banbury as Robyn was picking Tom up so he could come back  home with us and we also needed to do some food shopping. I was actually allowed to go in the shop with Robyn this time. She doesn’t like it when I shop with her because I like to have a look around, see what’s different, what’s on offer, and I take too long. We met Tom in the shop (he bought some sweeties! 🍬). A very nice chocolate eclair I had to munch on the way home.
Robyn cooked for me and Tom. We had some very nice chicken and vegetables. Think it went reasonably smoothly this time, as Robyn sometimes does get herself into a bit of a stress while cooking 😰

Then Robyn gave Leah’s hair a good cut. It needed doing, trimming all the ends off! Very nice. 

Look how busy Robyn was today!!!

Saturday 16th and Sunday 17th May

Went to a barbecue Saturday afternoon at Gary’s mum and dads. It was a nice sunny afternoon, really quite warm at times. His sister Ali came too with her husband and three daughters. They hadn’t seen me since I was in critical care, so a bit of an improvement! (If I was at my crazy stage when you saw me, I do apologise for anything I said or did ) It was a good afternoon with some lovely food and the girls playing. Takes me back to when my kids were younger, good times.

Even so my mood still wasn’t the best …

I didn’t do much on Sunday. Just pottered about while Robyn was at home cleaning the bathroom! Thanks Robyn, what a good girl you are 👼

Friday 15th May

Can’t even really remember what I did today so it can’t have been very exciting. Probably nothing – because i do know that I was in a bit of a funny mood 😕

Oh I remember now. Had a sudden thought. I gave my fridge a good sort and clean out!!

And I got the dreaded phone call from Birmingham. My white blood cell count was very low. This can be caused by certain medications affecting the bone marrow (which produces the white blood cells), and leaves you much more open to catching infections, which they don’t want to happen. So they have stopped a lot of my tablets for now and I have to go back to clinic next week again so they can check my blood and see if this has worked. I don’t know what will happen if it hasn’t? 😔 

Going to clinic and the ‘phone call’ always makes me think (in different ways depending on my frame of mind at the time) that I will always be having tablets, checkups, different problems etc. That has been, and still will be my life, not a ‘normal’ person. And when that thought has passed, I make myself think of the many many people who are much worse off than me, and haven’t been as lucky as I have …

Thursday 14th May

Clinic day again. I saw Mr Roll this time. He was the surgeon that came to see me when I had my weeks stay in hospital for my transplant assessment back in January. The surgeon goes through the operation with you and tells you what is going to happen, including all the scary bits which are rare, but he has to tell you the risks. And you can ask him any questions you might have.

We just had the normal chat. My liver was still doing well. My potassium level was okay again. But this time my blood results showed that my red blood cells were low. Anaemic. So he persuaded me to start taking some iron tablets. And told me to eat some red meat too. (Can’t see that bit happening somehow but when we called in the shop on the way home we bought some cold beef slices to try and tempt me. They don’t look appetising, didn’t work!) I’ll just go back to my spinach, which I couldn’t eat before because it’s high in potassium, but would now be good for me. This eating job can get confusing!!

I saw Brenda in the waiting area this time. She was the lady in the liver ward with me that liked to sleep! She hasn’t been feeling too good lately so was back for a checkup. (Hope you got on okay Brenda)

Off we went. Were there for less than an hour. It takes longer to get to the hospital than the length of my appointment!

Went for a pub lunch. I had root vegetable toad in the hole with mashed potato and peas! I can never eat a whole meal even though it was nice, but no red meat in sight.

Bit of shopping, then home.

Tuesday 12th and Wednesday 13th May

I seem to be getting into a bit of a bad habit on these days and not getting out of the house – which is not good for me 👎

Monday 11th May

Now, I am known to be a bit of a hoarder (what do you think to that Hannah Pinfold? 😄) I don’t like throwing things away, and I like to recycle EVERYTHING. But this means that my house is full of rubbish. Especially now as last year we had to move and this latest house is much smaller. Since I have been back home, and when I have felt up to it, I have been sorting some things out. The stuff needed to be gone. So we packed quite a bit into the back of Robyns car and had a journey to the local tip, where we sorted and threw the things into various different labelled skips for recycling and a few bits of waste. On the way, we also took a bag to one of the charity shops in the town. 

Did some food shopping, went to the bank, picked up a parcel from the sorting office that couldn’t be delivered (I was a little excited to be getting a parcel, but it turned out it was some sample jellies that the dietician told me she would send for me to try!) I was disappointed, I wanted a nice pressie And I don’t like to be told that I have to eat certain foods or drinks. I am stubborn.

Quite a productive day but still lots more things like that to be done. Just hope I keep feeling well enough to be able to continue with it now.

Saturday 9th and Sunday 10th May

Had a lazy Saturday really. As it was a nice day, Gary thought it would be a good idea to take his car into town and park it there so I would be able to walk just the one way down there and then get a lift back. So that’s what we did. And we spent a sunny Saturday afternoon having a walk around, but mainly sat on a bench in the middle of town (Robyn called me ‘very sad’ for doing this) and just people watched.

On Sunday we went to Banbury for some shopping and I actually had a Burger King!!! Not my kind of food really. Don’t like beefburgers! So I had a chargrilled chicken burger in a ciabatta roll. Not too bad.

In the evening I made my first visit back to the local pub to have a drink (non alcoholic for me obviously) with Gary, Robyn and Tom. Nothing had changed, still all the same people in there. We thought there was going to be some live music on but no one was there!! It was nice to be back out though.

Home for some cheese on toast 😀

Friday 8th May

Happy 21st Birthday Leah 🎁

To celebrate this occasion, me, Robyn, Leah, Hannah, Julie and Lynda went out for the day. Lynda came over early so they could secretly decorate the car with photos, balloons and banners. Then me and Leah walked along to meet them and on the way we saw this.

We set off through the town, balloons flapping. We were going water zorbing. Well everyone else was, I’m not allowed of course 😖

Looks fun doesn’t it? My two big sisters chickened out of course 🐓 😀

Then to find some lunch. We found a local pub and had some nice food and Leah opened some of her pressies and cards. We stopped off at Bourton on the Water on the way back and had a wander about. After that we piled back into the car and went to my sisters house for Leah’s birthday cake and more pressie opening.

I think Leah had a nice day. I was pleased that I felt well, was able to enjoy the food, walked everywhere and didn’t get too tired out.

Thursday 7th May

Lynda took me to clinic today. As it had been a Bank Holiday on Monday, this clinic was enormous! There were no free seats in the waiting room. While I was waiting my turn I saw and had a chat with my ward friend Marina, who obviously eventually had been allowed home, but her results were not good and she was having to go for a scan and then be admitted to the ward again. She wasn’t happy about that. Sorry Marina. 

I also very briefly saw Kate. Her results were the best they have ever been so that was some really good news.

I saw my first surgeon who came over, told me I looked well and asked me how I was doing. He always does that, which is nice. And on my way down the corridor I saw my third surgeon, who also asked me how I was. They all seem to remember me!

I had to go back to clinic in one week this time so they could check my kidney blood results as they had been high and they didn’t want to leave it for two weeks. The follow up care is really very good. It was my creatinine that had gone high which can be caused by the anti rejection medication Prograf, so they reduced my dose. And also reduced my Valganciclovir tablet dose too. Less tablets to take in the morning, yay 😀 My potassium result was back to normal, so no more diet restrictions for that at the minute. I am told that the kidneys are quite sensitive to change, whereas the liver is more robust. All my other results were still good.

A quick bit of lunch in the restaurant before my dietician’s appointment. I still have no appetite so deciding what to have for meals and eating are still not my favourite things at the minute. My grip strength had not improved so got advised to eat lots of protein if I can, which will continue to help build me up.

We call in to Tesco’s so I can get a bit of shopping, then home.

Spend the evening wrapping presents – it’s Leah’s birthday tomorrow!

Tuesday 5th and Wednesday 6th May

These were quite bleak days. Did some of the odd jobs about the house which I can actually manage to do but didn’t really hear from anyone. Seems everyone is just getting on with their own lives. It’s like when you have a death in the family, at first everyone contacts you, asks how you are, maybe visits, then gradually they all fade away and that’s when it really hits you and gets difficult. That’s how I felt on these two days, quite isolated and lonely. I’m definitely stronger than I was but still just can’t do a lot of things and people think you should be doing more (because they no way understand) and are either fed up of helping or haven’t got the time. Difficult times. I guess this is where the mental effects of what I’ve been through takes over from the physical effects sometimes. Anyway I’ll get through it, put it in another box and put it along with the other things that have happened to me in the past, only to be let out now and again, to be thought about or have a good old cry. Then I brush myself down and am ready to start again.

I have read/been told, that I would feel like this some days. I need to start taking myself out. I guess it’s a confidence thing the first time and once I’ve been out alone again there will be no stopping me. Think I might try next week – watch this space …

On Tuesday I went to see my GP just to have a chat about how I was. My sister in law Annette had been keeping him informed as to what had been happening with me (as she works at the surgery). Even though he told me that he didn’t think he would see me ever again! it was good to see him.

On Wednesday I didn’t leave the house all day or evening. Not even into the garden to put some washing out or anything. I had done this on Monday then it poured with rain and was extremely windy so it had blown all over the garden for me to go and try and pick up. That wasn’t easy! And also rather annoying. Back in the washing machine it went.

Glad when these days were over.