Saturday 25th to Sunday 26th July
My weekend was spent at Riverside festival.
Tuesday 21st to Friday 24th July
Not a very happy week. My mood wasn’t great and not a lot going on.
Had to clear a bit of stuff away ready for two new windows to be fitted, this was done, then spent time putting the stuff back, did a bit of spring cleaning, pulling out the sofas and cleaning behind them, dusting skirting boards, getting rid of the dust the window fitters made. Probably not good for me but I just couldn’t sit about.
Also just did normal everyday jobs, washing and pottering about to kill some time.
On Thursday I did see a good programme on the TV though. A man had a heart transplant when he was a teenager. All he knew was that his donated heart came from a 14 year old boy who was killed when he was out on his bike, he sustained a head injury. The man decided that he wanted to try and find his donor family. He went to his local library and looked back at old newspapers. He eventually found the report on the bike accident and so found out the name of the family. From this he arranged to meet with the boy’s mum. She showed the man old photos of her son. What I found quite amazing was that the boy on the bike had been to his friends house to do some homework when he got killed, and the boy (who needed the new heart) had also been at his friends house doing homework, and when he was walking home his mum was coming to get him to say the hospital had just called telling her a heart was available!
Before they parted she listened to the man’s chest to hear her son’s heart still beating. Obviously this was a very emotional meeting but she said afterwards that it did help her. Even though her son was just a teenager at the time, he had carried a donor card and so it made it much easier for her to carry out her son’s wishes.
During the week I also went along to my sister’s house for a visit and a cup of tea. I had two visits to Cafe Nero, one to meet a friend and the second to meet my other sister. They were all quite fun but I was glad the week was over.
Monday 20th July
It would have been my mum’s birthday today, so a bit of a sad day.
It was also clinic day. A visit I wasn’t looking forward to actually, thanks to my hospital stay. I just had a feeling they were going to keep me in, even though when I thought about it rationally I knew they wouldn’t have my results straight away, so wouldn’t actually do that.
In to the dietician first. Told her I still had no appetite, my tummy was unsettled a lot of the time which puts me off eating too. As always she just wanted me to try having the protein milkshakes more often and adding the gel to my squash. Try adding more snacks in. ‘Yes I’ll try, I’ll try’. We all know WHAT I’ve got to do. It’s actually getting me to do it when I have no appetite. That means you don’t want to eat anything, just don’t fancy anything, makes it extremely hard to decide what to actually buy and to prepare food. I’m sure they don’t understand (or do they just not know what else to say!)
I then saw a doctor that I hadn’t seen before. It turned out he lives in Winchcombe, not very far from us, and knows Chipping Norton well! He was an older man who had worked in this area of medicine for many many years. I think he was able to read me as soon as I walked into his room. He said that liver transplant patients were very good at lying. When people ask them how they are they always say ‘yes I’m fine or I’m doing well’ then later it comes out ‘well actually …’
He thinks I’m still recovering from some kind of infection but he doesn’t know what. They cant test for every one that exists. But he was the most sensible doctor in my opinion, saying he wasn’t going to give me antibiotics when he didn’t know what he was treating (thank goodness as they just make me worse), he was just going to give me time to recover. But it was important for me to remember that if I started to feel worse at any time, I must get in touch with doctors at the QE immediately and NOT my own GP or the Horton.
He, like the nurse the other day, said to me that it was still very early days in my recovery, plus I had this 2 week setback, and I wasn’t to be hard on myself. He also explained things a bit differently to how others have. He said that the rest of my body also has to get used to having a new liver. It has not been able to work to its full capacity for quite a long time with my bad liver and it all has to repair. And my head has to get used to trying to be in control again, where it hasn’t had to be for such a long time. Also about 6 months after transplant is quite a common time to feel a bit of depression from it all. I have been very fed up while in hospital and since I have come out, so perhaps I’ve started feeling this way a bit early !!!
He said my results were all slowly getting better but certainly were not what they should be yet and that this wasn’t going to be as good as it got, I would feel a whole lot better yet. That was good to hear!
I liked him. He had explained things well to me and Robyn. He made me feel a bit more at ease. He wasn’t just going to pump me full of any old drugs to make me feel bad, I liked that result especially. I hope I get to see him again next time.
I was the very last person to come out from the doctors area and I still needed my blood taken 💉 The nurse had just got her bag and was leaving when she saw me. I told her it didn’t matter, that she should still go home as I didn’t want it taken anyway! but she wouldn’t take that as an answer and I didn’t get away with it 😦
We then went up to the ward to visit Kate. She had been doing well and was now out of critical care and back up on the liver ward and also back on the transplant list. Robyn had brought Kate a colouring book and pens. Seemed a very good thing to do as it was my mum’s birthday and she loved to colour. It had also helped Robyn and Hannah get through some very stressful times while they were hanging about a lot for me at transplant time, and I also did some myself during my hospital stays. My hospital friend Marina liked to colour as well. Hope you enjoy it too Kate.
We didn’t get home until just before eight 😵
Saturday 18th to Sunday 19th July
Wasn’t feeling that great this weekend. Tiredness, tummy pains and diarrhoea again 😦
Went to Banbury Saturday afternoon as I needed some shopping. I didn’t really feel like going but I did need some things. Poor Jack, I hadn’t even got a birthday present for him yet! We went to two shops and I got my bits and pieces and I had enough really so we went back to Chippy. I went home and made myself do a few odd jobs, then I went to Gary’s and he did a barbecue. I knew I needed to eat even though I just wasn’t feeling like it. It was nice.
On Sunday Robyn wanted to go and look at cars for sale. Since her crash she has been driving around in a courtesy car but it’s going back in a week’s time so she needs to think about buying herself a different one. She had arranged to visit four. The first one she quite liked but didn’t love! The second one she didn’t like. The third one she really liked but it had been reversed into a ballard or something which she hadn’t noticed, so that one was no good really. The fourth one she didn’t like the look of. Not a very successful day for Robyn and I still wasn’t feeling that good. I was glad to get back. Robyn went to see her friend and her new baby and I sat in Gary’s garden and watched him make some stick men! He got the idea because some people have been making them ready for the Riverside festival and he has recently chopped down the tree in his garden, so has lots of branches and twigs still laying about. I also managed to reply to a couple of emails I have had for rather a long time, sending them my story. Hope I’m successful
Friday 17th July
Today I had my critical care follow-up appointment.
Me and Leah were at home waiting for Robyn to come back from an appointment she had in Oxford that morning. She was very stressed because there had been loads of traffic jams. Now she was having to drive to Birmingham as well. We were hoping to go out for lunch first but that didn’t happen because she was so late.
We saw a nice nurse called Claire but she wasn’t one of the nurses that looked after me while I was in critical care. She asked me how I was getting on and said I looked really well. I said I was incredibly tired and she said she wouldn’t expect anything else at this stage. Apparently it takes between 9-12 months to get over a stay in critical care, in which most people stay for 7 days or less. I stayed there for 3 weeks!! I said I thought people were beginning to think I was just being lazy now but that I actually still can’t do everything, my body just can’t do it. She said it was still early days and I shouldn’t feel guilty about this at all. She was quite surprised at how much I could remember about my stay in critical care too. Most people don’t remember very much at all, I can remember most things. She then asked if I wanted to go and have a look around the critical care ward to see where I had been. I did. I had been looking forward to this.
But I wasn’t prepared for my reaction. It was horrible. I just wanted to cry. We walked around and saw the different beds I stayed in, I was in 4 different ones over the time I was there. Three of them I remembered clearly, the first one not as much, but then that was when I was first admitted there and I was mainly out of it. I saw all the people lying in their beds with tubes everywhere and connected to machines, and I had a terrible terrible feeling in my stomach. I wanted to go and talk to all of them and tell them to be strong and that they would get through it eventually, just keep fighting. I saw Dave, the lovely military nurse that looked after me so caringly, and Steph who was really nice, and said hello to them. I also saw one of the nursing assistants and we had a little chat. Then Robyn and Leah both reminded me that when I was in my crazy moods, I didn’t like her and I wouldn’t let her do anything to me. I used to tell her that ‘my daughters were going to do it’!! Whoops I also saw and spoke to my physiotherapist that helped me to learn how to walk again (big thanks for that). I wanted to stay and help somehow and I would really have loved to have met more of my nurses but I also wanted to get out of there. I kept thinking about my visit for hours afterwards . It really unsettled me
I know certain things brought terrible memories back to Robyn and Leah too.
We went up to the restaurant and I had a cup of tea and the girls were just on their phones! before we left for home. But we had to sit in the chairs that they always sat in when waiting to visit me.
We picked Tom up from his house on our way back and dropped Leah off at Jacks. We needed to shop for something to eat. Before I got ill I used to work on the checkouts of our local Co-op supermarket. While I have been off it has been redeveloped and made much bigger and was officially opened earlier in the week. I haven’t been in there for more than five months or hardly seen anyone I used to work with. So I decided to be brave and go in with Robyn and Tom. Wow what a difference. You couldn’t really see the layout at all of how the old shop used to be. It’s very nice. And I saw Christine doing her shopping in there. She is one of my friends that I used to work with. It was good to have a chat with her. She said I looked so much better and that it had made her day that she had seen me!!
Tom cooked my meal for me when I got home. All I did was sat on the sofa in a bit of a trance thinking about my day and feeling very guilty that he was doing that for me!
Monday 13th to Thursday 16th July
So Cornbury had ended and we had spent our last night in the tent. And it was raining ☔️ Just what we needed to pack up the tent and help to clear everything away on the Riverside stage. This time I managed to help with some litter picking, tidying the ‘office’ which is basically a shed on wheels that they use for storing food, drink, anything really, so it was ready for towing again. And putting away this time, all those hanging cd’s! Ben, another man that was helping, who has had two kidney transplants believe it or not! went down to the production office and came back with some pieces of toast for us. Everything seemed to be cleared away by not long after lunchtime, very quick I thought.
I went home and I don’t think I moved very far for the rest of the day. I went into a bit of a dream world! I was tired so I’m just going to blame it on that. I had a very good night’s sleep 💤💤💤 that seemed to go on for ages!
Tuesday, Wednesday and Thursday were nothing days really. I had no incentive to get up and go. I was walking around like a bit of a zombie and felt like I was on another planet! Maybe my awful two week hospital stay and then Cornbury were having an effect on me.
Tuesday I had to ring the Queen Elizabeth and try and sort out my appointments I had there. I was due to go back tomorrow to have my blood taken but I just couldn’t get there. No one could have any more time off to take me as I was also due to go Friday to a critical care follow up appointment and the following Monday for my normal clinic appointment. After leaving two messages with different people on Monday which no one replied to, I rang again and she assured me she would get someone to call me back. It did happen! The secretary decided she just needed to check with the doctor but she didn’t think it would matter if I didn’t go tomorrow, just waiting for Monday’s appointment should be fine. So she rang me back and this was confirmed. One thing sorted. I then made myself clean the bathroom. I don’t know if this was a good decision to get me moving or a bad decision because my body had had enough. Anyway throughout the day it got done.
Wednesday I was planning on doing quite a bit of washing. I put one lot on to discover that all my washing powder had gone. How annoying! See, I made an effort to plan things and today even that didn’t work I then had to ring to cancel another appointment. I was due to see Dr Ellis, my original consultant, in Banbury tomorrow, but I couldn’t get there either. And I didn’t think it was crucial to see him as I’m still seeing the Birmingham doctors. So after waiting for literally half an hour on the phone and gradually moving up in the queue, I got to speak to someone. I have to go back there in August sometime now instead.
Thursday I didn’t do much at all. I’ve got to get myself out of this frame of mind. It’s not really me and I don’t like it.
Leah was excited to be having a new phone delivered this evening. She has been having problems with her phone for absolutely months. She rang them and this time they told her it was an actual fault on her phone and they would deliver a brand new one to her, between 6pm and 10pm. So mine, Leah, Jack and Robyn’s evening revolved around this really. We chatted about silly and horrible things while we were waiting, and waiting, and waiting. Robyn kept asking Leah ‘as soon as it gets to 10 o’clock are you going to go straight to bed or give them a few extra minutes?!!’ It got to 10.15pm and Lead decided enough was enough and she went to bed! Not many minutes after there was a knock at the door and Jack was shouting ‘Leah, LEAH!!!’ She got her phone 📱at last. Thank goodness for that. What a fun night that had been!
We could all now go to bed and sleep peacefully.
Thursday 9th to Sunday 12th July
I get to go to Cornbury!!
Gary helps organise the Riverside festival in Charlbury. They also run a stage at Cornbury festival. As a result of this I get to go along. Lucky me.
Thursday morning we went over to help with the setting up. Obviously this year I was not really able to do much to help, especially as I had only left hospital at 8.30pm the night before and was tired and weak. I really didn’t want to be at home alone in four walls for another day though, so I decided to go along, even though I felt very guilty that I did almost nothing 😦 just a bit of decorating on the stage with some old cd’s (sounds weird but very effective) and a bit of artwork!
Friday the festival opened. It was a lovely warm sunny day. There were various bands playing over the three different stages. And lots of trader stalls selling various typical festival things. And lots of different food stalls.
Just spent the day wandering around, catching some music on the other stages, sitting backstage relaxing and listening to the music on the Riverside stage, even did a bit of blogging! We also went to pitch our tent as this was going to be home for the next three nights.
Went to watch Chas&Dave. Showing my age knowing who they are!
Couldn’t get to sleep for a while that first night. Could hear the music coming from the campsite bar, which stays open all night almost, people talking when their walking past and other strange noises. But I must have eventually dropped off. When we woke it was so hot in the tent I could hardly breathe, there was no air in there. Open the zips quick! We were in for another hot day.
We drove the few miles home so we could have a shower and get a change of clothes, but had to be back within the hour ready for the bands to start. Gary has to be available to help the bands get their stuff on and off the stage, and whatever other jobs need doing. What a rush though, I can never find anything to wear in such a short time
It was much much busier today, obviously being Saturday. My friend Sally and some of her family were coming today as Tom Jones was headlining tonight and they wanted to see him. We managed to meet up with them a couple of times (not easy in the crowds of people). Sally had not wanted to text me in case I was still stuck in hospital and she would have then felt awful that I couldn’t be there. So she was pleased to see me!
Tom Jones was reasonably good but I did think I would recognise a few more of his songs and that they would have been a bit more upbeat.
Straight to sleep tonight I think. Must have been tired 💤
Back home for a quick turnaround again but this morning before we left Chris (who also helps with Riverside and backstage) made a bacon, egg and grilled cherry tomatoes roll. A Sunday morning cooked breakfast. It was absolutely delicious, just what I needed! But this meant I had even less time in the shower at home 😦
Tom’s band Dance a la Plage were playing this afternoon (Tom on the drums). Note the hanging cd’s I mentioned earlier!
So Robyn was coming over with her friend Rochele and also Leah and Jack decided to come over too, so that was all very nice.
We sat backstage, wandered around and went to watch Seal. He was good, I enjoyed him. Think I’ve still got his album!
The last band of the festival were The Felice Brothers, so we went along to watch. A violin, drums, accordion and two guitars. Not normally the kind of thing I would listen to but they were actually really good. I enjoyed them.
I’ve left quite a bit out I’m sure from this whole long weekend. I saw a few old friends that I went to school with, did quite a bit more wandering, people watching, listening to various bands and other things that were going on etc, than I have mentioned. But this post would never end otherwise. I had a good time and I think I coped with it all pretty well considering that I had been shut away in hospital going insane for the last two weeks. I was tired and my body ached but it had been a nice treat for me.
PS I’ve put some more photos of Cornbury on my Photos’ page for you to have a look at.
Wednesday 8th July
The doctor appeared. I was feeling very anxious waiting for his visit this morning. I was at the end of my tether. I so wanted to be discharged. And I really wanted to go to Cornbury music festival this coming weekend. He was really keeping me on my toes though because he told me he was 90% sure I would be able to go home later but he was waiting for some blood results which probably wouldn’t be back until about 5 o’clock. Why are they doing this to me? 😦 I feel fine.
He also explained to me why they had stopped my anti rejection medication last night and this morning. My tacrolimus levels were too high so they had suspended it for 24 hours. I was to start taking it again tonight, but now at a lower level of 4mg morning and night.
Off he went, leaving me to stew for the rest of the day, would I be going home or not?
No, thankfully this wasn’t someone that had turned up to do a last minute procedure on me. This is a picture my lovely daughter Leah sent to me while she was at work. She is training to be a dental nurse!!
The doctor appeared again at around 4 o’clock. Bad news I thought. But NO! He said I could go. I could have kissed him! I had to come back next Wednesday morning though, so that my bloods could be re-checked. I would have agreed to anything as long as it meant I could leave. I think if he had told me no, I would probably have had a breakdown. I know it sounds really silly, but I actually could not have coped with being in there any longer. I was mentally drained.
Gary came, either for a visit or to take me home. Luckily the last option. But discharge from hospital is never a quick process. You have to wait for the paperwork to be sorted but it’s waiting for the medication to come up from pharmacy that takes the longest. I also needed the cannula to be removed from my arm. We waited and waited and waited. This was so unbearable. I even offered to go and collect the tablets myself. But no, the pharmacy where they are coming from is not open to the public! I even would have gone without them because I have more tablets back at home, but I didn’t have the antibiotics that I still needed to take. Flip, no choice but to wait. The longer I’m stuck in here though, the more chance of them coming to find me and say they had changed their mind.
At almost 8.30pm (a wait of over 3 hours) my tablets at last appeared and off I could go. The nurse that had looked after me for the last 3 nights actually apologised to me, and said she had never woken someone up through the night so much before. See, I wasn’t making it up.
Hospitals are certainly not a place to go if you need to rest. You get woken up so many times and have a very early start to the day with blood and obs being taken. Then it’s breakfast, cleaning, doctors rounds. Medication throughout the day if you need it, drips being set up etc. Lunch and supper. More cleaning. Drugs round again. Finally bedtime. All completely necessary but makes up a very busy ‘hospital day’.
Everyone had been very nice but these 2 weeks had all been so unbearable and such a test for me to get through. I did it, but this was what I came out feeling like 😖