Saturday 9th to Sunday 10th April

Saturday was Grand National day. A quick trip to Banbury, then a walk down to the bookies with Gary to put our money on the horses we had chosen. I picked Pendra because the horse is trained just outside the town where I live and Silviniaco Conti simply because I didn’t know how to pronounce it!!!

We went along to Julie’s to watch the race with Hannah and Robyn too (Leah had gone on a romantic day out to London with Jack as it was their 4 year anniversary 💘) It has been a tradition in our family to have a little bet on the Grand National every year. I can remember being allowed to pick a horse when I was a child, we all picked one, my dad quite liked his horse racing and would study the form a bit more than the rest of us though, and then we would all sit round the tv to watch. And back then my mum just used to phone the local bookies to put the bets on and she would go down on the following Monday to either collect the winnings for any of us, or to pay the debts!

I didn’t win – again 😦 Hannah picked the winner though and she did last year too, so I think we will all be copying her when next year’s race comes along!

Sunday was spent not doing anything too special.

But I did read about this on the Transplant Australia Facebook page.

‘Humans aren’t the only ones benefitting from life saving transplants. Check out this story by Dr Chris Brown about a world first beak transplant’

“This seabird just got a second chance at life thanks to a world first beak transplant. 

When this cormorant was found floundering in the surf off the coast of Queensland missing his top beak, life seemed hopeless. But thanks to a world first procedure he’s now headed back to the wild. “Beaky” has received a groundbreaking beak transplant after a matching donor beak was located just in time. 

I attached the preserved beak using lightweight pins and wires. But for extra strength, Beaky received a distinctly Queensland touch; his beak was fibreglassed in place by two local surfboard shapers. 

After spending two months learning how to catch fish again using his artificial beak, Beaky has just been released by the same two carers that originally rescued him and ultimately saved his life. It was an incredible team effort and one that none of us will ever forget…”

Thursday 7th to Friday 8th April

Thursday and Friday were days that were spent with me still being extra tired to normal (as people who suffer with PBC will know, I am constantly fighting the tiredness battle, just sometimes much worse than others ) and still at times being on a bit of a different planet with my state of mind 😖

So Thursday, my day off, was spent at home. I did take myself along to Caffe Nero to break up the day and get out for a while and went for my regular Thursday evening walk.

The Donor Family Network ‘Gift of Life’ memorial was also unveiled today by HRH Duke of Gloucester at the National Memorial Arboretum in Shropshire. It pays tribute to organ and tissue donors across the UK.

Friday was back to work again. 

As I had already prepared the chicken and veg on Thursday evening to go in our slow cooker, we had a curry waiting for us for dinner tonight.

 
Not a patch on Gary’s ‘curry Saturday’ creations but it was still quite tasty 😋

Monday 4th to Wednesday 6th April

Happy Birthday to Gary.

Robyn was busy doing other things on her day off today so I had a day at home.

Here is a good news Transplant story. I could quite possibly be writing about a similar story myself in a good few years time. The family concerned all were suffering with Polycystic Kidney Disease which is the same illness that my daughter Robyn has, which she has inherited from her dad. He was lucky enough to have a kidney transplant in 2011 with a kidney donated from his brother. Quite a few different members of his family have also had transplants as a result of PKD. As it says in the article there is a 50/50 chance with each child of passing the illness on. Robyn found out accidentally from an emergency scan as a result of a bad car crash she had, but Leah hasn’t had any of the tests yet to see if she has got it, as the doctors we have seen about it don’t really recommend you do this until you are in your thirties. So WE wait and see – but what a great result for this dad and his daughters 😀

On Tuesday I had been asked if I could stay on later at work as there was an important visit in the afternoon. So I agreed to stay until 5pm, an extra three hours! I really didn’t know what this was going to work out like but I wanted to give it a try and see how I felt afterwards.

It was a real struggle actually. By the time I had finished, then got some bits of shopping and carried it home, I was exhausted. I couldn’t do much else for the rest of the evening.

Then I was back at work on Wednesday morning, feeling rather tired and not quite myself. I was asked if I could stay a bit later again but I had to refuse this time. I wouldn’t have been able to do it. And this made me feel even more rubbish in itself. I was very sad and frustrated with myself that I couldn’t do it. I guess this shows that I still have limits of things I can and cannot do without suffering, but I am trying my best. Even if I don’t succeed, I guess as long as I keep trying, I should be happy with that. I know I am stubborn and too hard on myself sometimes 😏

I came across this great article on Celebrities who have had transplants. Have you ever thought about that before? Do you imagine that they have their own separate list or just automatically go straight to the top of the super urgent list? Do they use their money in some way to help to get them what they need quicker than the rest of us? And thinking about it even further, what would happen if a member of the royal family needed an organ? Has this got you wondering now too? I know I have said before that the whole ethics side of organ donation interests me, I find it completely fascinating.

Going back to the article, if you also look along the bar at the top you will see there are lots of various illnesses that you can click on to find the list of celebrities who have suffered with them. A lot of people like to keep up with celebrities in the news don’t they and see what they are wearing and what they are getting up too. Well this makes for interesting reading about them too, but in a slightly different way!

Saturday 2nd to Sunday 3rd April

On Saturday I just went into Banbury with Gary and did a bit of shopping and then later paid a visit to my sister. I was feeling a bit peckish so Hannah made me a really nice ham and cheese sandwich. I did enjoy it. But then the others decided they were going to the local takeaway and all had fish and chips! And that’s how nice they are to me 😂

This article Napping is good and does make a lot of sense. Shame I just dont allow myself the time to do this 😏

Sunday was a nice day so Gary decided he would come down to my house and do a few jobs in the garden. Lucky me!!!

There’s not much grass left on my lawn. As we had to wait so long for the slabs to be moved to make a path, it killed the grass off underneath them. It’s also so uneven that cutting the grass with a lawnmower is a bit of a nightmare. So Gary filled the holes in and levelled it all out a bit and has put some grass seed down. It looks so much better already. Now to just wait for the grass to grow 🤔

Then out comes the power washer and the patio gets a good spraying. What a difference that makes!

So now we just need a bit of warm sunshine so I can get my table and chairs out! 😃

Friday 1st April

April Fools Day. A day which is celebrated every year by playing practical jokes on other people and I normally have always tried to catch Robyn and Leah out first thing in the morning. But today I couldn’t even begin to think about what I could do 😔

I seem to be having a bit of a hard time in my head at the moment. I am feeling quite guilty that I am not doing anything amazing like climbing a mountain or running a marathon. I am just going to work, trying my best to keep up with the housework, going out every now and again, and even just doing those things tires me out! I mentioned to Robyn how I was feeling and she said ‘but your living a normal life now’ and I guess that’s maybe how I need to think of it and what organ donation is basically all about – ‘An organ transplant may save a person’s life or significantly improve their health and quality of life’ and it has definitely done all those things for me. 

I also know a few people that are having a hard time at the moment and I feel so guilty now when other people are ill and I am feeling ‘okay’. Why is it me that is doing so well? I really don’t think it’s fair and it affects me quite badly. 

Alex (who was in the bed next to me in the QE after our transplants) was going for a biopsy today as she has been feeling unwell again recently and this was really upsetting me. I couldn’t stop thinking about it and I knew work this morning was going to be tough as my concentration wouldn’t be good.  I also wasn’t feeling particularly great myself. I was on a bit of a different planet this morning but I eventually pulled myself together at the last minute and so was then rushing around to get ready. 

When I arrived at work, before I had even sat on my till, I saw my friend Sue’s husband John. Sue is having treatment for cancer at the moment. I asked how she was and everything. And then he told me that their daughter has been ill and was at the hospital right now having a scan. Possible cancer too. I couldn’t believe it. That poor family. 

And so now this did my head in just a little bit more. I felt so sad and stressed. What a nightmare this morning was so far and it was only 10 o’clock. I really struggled at work and a couple of times throughout the morning I did think about going home, but I made myself keep on and I managed to finish my shift, just about.

When I got home in the afternoon and early evening I was kept busy doing all my jobs as always.

Then later all I wanted to do was collapse on the sofa. What an awful, emotional day in my head it had been, I was exhausted and I was so glad that it was over 😖

Tuesday 29th to Thursday 31st March

Tuesday was just time spent working.

You’re doing a good job Click on this and have a read of this article. I can remember that I used to find the times after my various doctor and consultant appointments quite tough. Near the beginning of my illness it used to bring it all back into my head even more that I wasn’t the same as everyone else, I had an illness that was going to get worse and would probably lead to a transplant. But then I would go back to work, get on with normal day to day life and put it to the back of my mind at times, waiting until the next appointment or test, when it would all come flooding back again. Then as the illness progresses, the medication gets more and more, work gets harder to cope with, some days you feel very ill but you try to get on and be as normal as you can. Some days are so hard to get through. So this is a message especially for any of you reading this that are suffering yourselves with a difficult illness, and whatever you may be doing to try and get through it, don’t be so hard on yourselves, you ARE doing a good job.

On Wednesday morning I went off to work. I was looking forward to some little visitors coming this evening, my niece Claire’s two little girls Tia and Freya. They were coming for a sleepover with Robyn as she had a few days off work and they were on school holidays.

Almost as soon as they arrived they wanted to take our dog Jake out for a walk. Jake is very old now and suffers a bit with his legs so can’t walk very far. But as it was a nice evening we decided to just take him for a little walk around the block. He made it just fine and it kept the girls happy too!!

We also walked along to the shop to buy them some sweets and called in to see Julie and Hannah briefly on our way back. Robyn’s plan then was to take them up to her bed where they were all going to be sleeping, put a dvd on and she thought they would soon fall asleep. I think they had other ideas though. Tia wasn’t too bad apparently but the little one Freya seemed to be quite happy having a good old chatter for quite a long while 😬

Then they were still all awake early so Robyn got herself up and got the breakfast ready, which was pancakes with lemon and sugar! which she took back upstairs to them, so Tia and Freya were even lucky enough to get breakfast in bed!!

Thursday was forecast to be a reasonably nice day so we decided to take Tia and Freya to Millets Farm Centre where there is a nice farm shop, restaurant, garden centre, craft shop, farm animals, play area etc. Probably because it was the Easter holidays I think, they also had a carousel and some trampolines which they had a go on and we also did a Easter hunt so that Tia and Freya could get a free bun from the Easter bunny’s hut and do a craft activity at the end. We took a mini picnic with us too. We had a nice time.

 
Freya wasn’t too pleased when her mum turned up at the end of the day to collect them, she wanted to stay with Robyn again. But poor Robyn was exhausted when they left 😂

So during this whole month I have been wondering to myself what March normally looks like! As the whole of March 2015 was spent in my different hospital beds We have had some nice days of sunshine. I can remember one day especially being nice too while I was in critical care as they turned the bed round for me so I could see out the window. Because of my ‘crazy times’ I saw different things to what were really out there though! I thought the people I could see walking about had been out shopping and were returning to their cars in a multi storey car park. It was in fact the Birmingham Women’s hospital just opposite the QE. I also saw a massive black hammer on the top of the ‘car park’, which I thought was something to do with Gary’s work (he’s a tool salesman!), but it was just part of the building. I think looking out did upset me that day though as I can remember shouting to the kids ‘take me home, I want to go home’ over and over and that the nurse that was looking after me came over and said ‘hey what’s going on, we’ve had a nice day today’. She was one of the chatty nurses and I can remember her talking to me all the time. I think she was the one that told me she had actually been to stay on the campsite just outside Chippy where I live. I can remember her so clearly. In my mind she had slightly frizzy gingery coloured hair all tied back. I also thought she was the mother of someone that lives in our town! I would love to see her again. There was also another nurse working alongside her and they were stood talking about what she had done and things, I think she had worked elsewhere and was new to the QE, and I can remember her saying to me ‘don’t worry I am qualified’. Oh dear, what fun times I had 😣

This March, as well as working and all the normal day to day jobs, I have been able to get out and about. I’ve been on a few nice walks, I’ve been to a spa, I’ve visited the theatre and I’ve almost been to a football match! A bit of a difference 🤗

Friday 25th to Monday 28th March

Good Friday morning and off I went to work, while everyone else had the day off 😠 Then back to get on with jobs at home. So just a normal day for me

I did read a very moving article in The Guardian newspaper though. This made me cry. Click on the link and have a read. I don’t think I need to add any of my own comments to it.

Easter Saturday was just spent doing a bit of shopping.

I was extremely pleased when I found out it was going to be a curry Saturday.

 
YUM YUM YUM 😋

On Easter Sunday I was spoilt by Robyn who gave me this.

  
And I was also spoilt by Leah who gave me a yummy selection of chocolate biscuits and sweets 😃

We had been invited along to Julie’s for an Easter egg hunt and we had also all been asked to think of a game for everyone to play and provide the prize! My game was an Easter Sudoku puzzle and I had found a #Marmite chocolate Easter egg for my prize! We had a fun afternoon. And we were lucky that Hannah had made another one of her amazing delicious cakes.

 
Love the pic Han 😂

Bank Holiday Easter Monday was just a day spent between being at home, being at Gary’s and being at Julie’s, eating some more of that delicious Easter cake 😋

Wednesday 23rd to Thursday 24th March

Work today. My poor old body was aching. I’m guessing as a result of the aqua aerobics on Monday

Then after being at home for a little while we set off for Oxford. A look around a few shops, into Ask restaurant for a lovely pasta meal and then it was time to make our way to the New Theatre where we were going to watch Goodnight Mister Tom 🙂

As always, something had to happen didn’t it? I got my bottle of drink out of my bag, unscrewed the lid and it all fizzed up and squirted out the top, over the leg of the lady sat next to me!!! Rather embarrassing but so funny too 😂

Anyway the play was good!!!

Thursday was spent at home trying to get a few things done as in the evening I was off to the theatre again, but this time to Chipping Norton Theatre. I was going to see Jessica Thom in Backstage in Biscuit Land which is touring around the country. It is raising awareness of Tourette’s syndrome in a lighthearted way. I found the show fascinating. I have never seen anything like it before. A tub of biscuits even got passed all around the audience so we could take one if we wanted! I really do recommend that you go to see the show if you get the chance.

Jess Thom has Tourette’s syndrome which is an inherited disorder where people can suffer with both physical and vocal tics. Many people with the condition isolate themselves to avoid the staring, which is very sad but I can completely understand why they would want to do this.

Jess at the moment involuntarily shouts out the word ‘biscuit’ thousands of times a day. Also hedgehog is another popular word. But these do change. Anything that she experiences can become a tic. If she tries to hold the words in it becomes uncomfortable like trying not to blink. When I have watched programmes on the TV about this in the past, the people I have seen all seem to shout out swearing words, which I do think is what most people associate the condition with and shows Tourette’s in a completely different way. But only 10% of people with the condition actually swear. I had no idea about the fact that people can also get involuntary physical movements too. Jess constantly hits her own chest and wears padded gloves to protect her knuckles. And now she also needs to be in a wheelchair as her legs twitch so badly. I did think to myself while I was sat watching the show just how exhausting this all might be?

Jess is also known as Touretteshero, which she created to make it easier to talk to children about Tourette’s. This month she is staging a Tourette’s awareness day at Tate Britain. She also raises awareness through her blog Touretteshero and her website.

It can’t be easy. I think she is doing a great job 🙂

One year ago today I left the Queen Elizabeth Hospital in Birmingham. Here is my very shaky exit (still in my pyjamas!!!)

I can remember that I was very determined that I would walk by myself out of that ward. I’m not sure it shows just how tough it was for me.

And a hug from just one of my hero surgeons was a bonus 😀

And so today, a year later, I have been able to go on a two and a half mile walk through our lovely local countryside in the warm Spring sunshine. How lucky am I?

Massive thanks and respect to my two donors and their families.

Monday 21st to Tuesday 22nd March

This morning Robyn, Leah, Julie, Hannah and me! set off to the Lygon Arms hotel in Broadway. We were going to have the spa day that I had bought everyone for Christmas.

   😂

We all got straight into the jacuzzi. It was so hot to get into at first, just lovely. Then we all joined in with the other ladies who were doing the aqua aerobics class. It was great fun. We also did a bit of swimming, messed around in the pool and got ourselves a complimentary tea or coffee while we just sat about relaxing on our lounger chairs. At this point me and Hannah would have really liked a bit of chocolate or some biscuits to go with our drink! but they didn’t have any anywhere 😠 Note to myself, I must remember to take some snacks with me on my next visit to a spa!!! Then it was time for lunch. We went through to the restaurant in our robes and slippers, getting a few funny looks from the other hotel residents! We had to wait rather a long time for our meals to come which was a bit disappointing as we only had a certain amount of time. I did enjoy mine when it arrived though, I had chosen fish and chips. It came on one of those wooden boards that meals often seem to come on now when you eat out. I think the waitress must have tipped it just too much as the little pot of peas came sliding off and went everywhere, mainly all over the restaurant floor 😂 Poor lady! And Julie and Hannah only just had time to finish their last mouthful before they had to rush back to the spa for their treatments. We were all having the same – a back, neck and shoulder massage followed by a facial. They were spread out at different times through the afternoon though as they didn’t have enough therapists to do us all at once.

We all then had a final shower and got back into our normal clothes. I did feel quite refreshed and it was nice to be finally dry again! Hannah, Julie and me were finished first so we went back through to the hotel and had a cup of tea while we were waiting for the other two. Hannah had already been out to one of the shops on the high street and bought us some little shortbread biscuits. Yes, at last! Yummy 🙂

A nice day, but then it was time to go back to reality

Also a reasonably relaxing day with just a little bit of exercise too, but I was exhausted 🙃

So then Tuesday was back to a normal day of work and home.