Sunday 2nd to Tuesday 4th August

Off to the beach today. So first we had to go into Wadebridge as Emma and Jamie wanted to buy a wetsuit. All the kids like to go bodyboarding while on holiday. As it was Sunday most of the shops were shut, the one that was open was too expensive so that idea was given up. We did get to go to Granny Wobbly’s fudge shop though, that was a nice bonus.

It was lovely at the beach, sunny but windy. Had a walk down to the sea when the rest of them were ready in their wetsuits 🏄 Normally I would have got changed and gone in the sea too but i knew it was going to be ‘rather cold’ and I wasn’t sure if it would be a good idea or not to be battered about by the waves.

Gary’s dad cooked a barbecue in the evening and everyone came over to our caravan to eat. Then my tummy decided it was going to be unsettled! so I stayed in the van 😦 while everyone else went up to play rounders and had a drink in the clubhouse.

On Monday we drove to a village called Rock and waited for the passenger ferry which was going to take us over to Padstow. We wandered around the shops and the harbour there. It’s nice in Padstow but it was incredibly busy. Very long queues for pasties and ice creams! And so many dogs on holiday too!!!

  
But I did get to have a cup of tea with a seagull while in Padstow!

Tuesday we thought was going to be another nice beach day. It was sunny at times and when that happened it was actually nice and warm but it was also very windy.

Hot dog and chips to eat when we got back 🙂 this time at Ali’s caravan. Then up to the clubhouse. There is hardly any mobile phone signal in our caravans and no internet service so we all descend upon the clubhouse in the evening to try and get on the free Wifi. Even that’s a bit temperamental though and if you are lucky enough to connect it can be very slow at times.

Worth going up there though for the warm Sahara nuts with some kind of curry flavour coating on them that you can get from there – nice!!!

Saturday 1st August

At 4.45am the alarm went off, although I had been awake for about two hours already Few swigs of tea, get ready quick and off we went to pick up Gary’s daughter Emma and her boyfriend Jamie. The plan was to meet the rest of the holiday party at Gordano services at 7.00am. For once we arrived early!! Hello Gary’s mum and dad, his sister Ali and Tim her husband and their children Lily, Molly and Katy. Had a coffee, was this really mine?! …

Then on to our next meet up point for bacon sandwiches. And then our next one for another drink!! Last stop St Minver Holiday Park, Cornwall. We were staying in 3 separate caravans but all quite close to each other.

We encountered some rain on the way but by the time we had got into our caravan and got sorted the sun was out, so some of us sat out on our patio for a while. That was nice.  

Not a good start for my eating this holiday though. We went to the clubhouse on the site. I ordered a vegetable lasagne which was still cold when it arrived so we sent it back. When it came back again I didn’t really like it too much so I only ate half of it anyway Fussy old me 😏 Back to the caravan for bed, it had been a long day. But sleeping wasn’t too successful either!

Monday 27th to Friday 31st July

Monday morning I went with Robyn to pick up her new car from Kidlington. Trouble was, how were we going to get there? We decided we would get on the  Oxford bus. But when we got on, the driver told us he wasn’t going through Kidlington. So we had to go right into Oxford, get off and find a bus back to Kidlington!! Oh well, a bit of an adventure for a Monday morning.

Into the garage we went and poor Robyn had to part with her money, then off she drove in it. It’s a nice car, a lovely blue Volkswagen Polo. I used to have one too but Robyn’s is a much newer model. We got some lunch, got some shopping then had to get home so Robyn could go for her massage. What a life she has 😜

Tuesday and Wednesday I just spent at home. Very boring really and much too quiet for my liking.

Thursday was photo shoot day 📷 Robyn had been in touch with the Oxford Mail to get some publicity for her donor challenge and a lady had contacted her to arrange for a photographer to come out! So at the crazy time of 9.00am in the morning we were posing 😃 in our organ donor t-shirts and with Robyn’s dad, who has also had a kidney transplant can you believe! I wonder how many children have had to go through that, both parents having transplants? I’d love to actually know.

It was funny. Me and Robyn had to look at each other and we couldn’t do that without laughing. We had loads of pictures taken. Don’t know what on earth they will look like. We are supposed to be in the paper either on Saturday or Monday apparently. So we wait to see …

My next challenge was to get to my local doctors’ surgery. I had an appointment at 10.20am. I was going to have to catch a bus from the town to the surgery that’s just out of town. I got there just in time. Had a good old chat with Dr Fisher. I used to see him all the time before transplant so he wants me to keep in touch now! He said I was looking so much better, he told me I always looked quite ill when he saw me before so he had got used to seeing me like that! He’s still saying I can’t go back to work yet though I was then too early to get the bus back so I went into the hospital which is next door to the surgery and had a chat to my friend Wendy who I used to work with a few years ago. It was nice to see her although we are Facebook friends so we do keep in touch that way.

A bit of an eventful day for me!

Friday I did a bit of packing. I’m going on holiday to Cornwall tomorrow 🔆🍦

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.