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.

there were two items about donation in the news today.

An American man, who had a rare type of cancer, has had the world’s first skull and scalp transplant. It took 15 hours. He also had a new kidney and pancreas at the same time.

My family thought that my transplant took a long time! From my own experience I can just about imagine what this man must have gone through. I hope it is all really successful for him.

“Imagine connecting blood vessels 1/16 of an inch under a microscope with tiny stitches about half the diameter of a human hair being done with tools that one would use to make a fine Swiss watch”

And there has been a drop in the number of young people giving blood.  NHS Blood and Transplant are suggesting that some of the reasons why might be because people are too busy or scared of needles or don’t know where to go to donate.

You can benefit from donating, as research has discovered that donating blood can help reduce the risk of heart attacks and cancer.  And it can also be good for all of you out there that might be watching your weight, as you burn 650 calories with every pint donated.

My daughter donates blood. This isn’t easy for her to do, she has passed out before while there and sometimes she just scrapes through in the tests they do beforehand. But she keeps going.

“We want to remind everyone that blood donation is one of the simplest ways you can save or improve a life”

So please everybody, BECOME A DONOR. In any way.

Go to bbc.co.uk/news/health if you want to read more about these stories.

Thursday 28th to Sunday 31st May

I was due to go to clinic today but couldn’t get there. No one could have time off. I really didn’t want to be inside on my own all day today, so I decided to walk to Cafe Nero in the town for a cup of tea and play on my iPad! When I got there who did I see? My brother in law was sat in the window, killing time between jobs. He was just about to leave so I had his chair. A real good ‘people watching’ position! Then along came two ladies and sat down right beside me. One of them ate two sandwiches, a fancy yogurt and a pain aux raisin while she was sat there. Wish I had her appetite! Their conversation was quite interesting though!! But I was trapped in the corner ‘Urm excuse me, please could I get out’ 😃

I went back on the Friday but this time I was meeting my friend Jackie when she had finished work. Another friend Kate just happened to come in with her husband, so they came and sat with us. Nice.

I really must ask for a loyalty card when I’m next in there. My sister has one for most places she goes and loves getting her free cups of tea or coffee when she’s earnt them. I feel like going into competition with her. But she and her husband John are always going out somewhere (👫 ☕️ 🍷🍴 ⛳️ ✈️ what a life!!!) and I think there is no way I would be able to keep up with her.

Gary’s mum and dad came for a visit Saturday morning, so had a coffee and a natter with them. This started off in the garden for a while but the sun disappeared behind a cloud and it got cold, so then moved inside. Off they went to do some shopping, so me and Gary ended up going to Millets Farm Centre which is a farm shop, restaurant, they have a few animals there and a children’s play area, little craft shack, garden centre, maize maze and falconry centre. It makes a nice day out. Me and Gary bought some lunch and ate it overlooking the duck pond! as the sun had come back out and it was quite warm and sunny by then. Then had a wander about. When we got back home we had another one of Gary’s barbecues. Yum.

On Sunday, after sorting my recycling and rubbish bins ready for collection the next day! we went out for some dinner. To Bitter & Twisted, a local pub. I had a flatbread with chunks of sweet potato, mushrooms, spinach and haloumi cheese on top. It was absolutely delicious and my plate was empty. (Okay a small portion did end up on Gary’s fork!) I hope I can go back for more of that sometime soon.

That’s a few days passed.

Wednesday 27th May

Happy 3 month anniversary to my liver. Am I suddenly a normal person again now? Am I allowed to drive or go on public transport? Am I allowed to go swimming? Am I allowed to work?

But a much more important but very sad anniversary, is that my wonderful mum died a year ago today.

 (My lovely cheeky mum. She looks like she’s been up to something in this photo. Her hair maybe?)

So Julie, Hannah, Robyn and Leah booked the day off work, Lynda booked the day off golf!! so we could spend the day doing something that nanny (as I also liked to call her) enjoyed doing.

Robyn had bought herself, Leah and Hannah a ‘beading’ to make and take to put on nanny’s grave. This was something they all used to do with nanny when visiting her. Hannah had bought them all a tiny bottle, they had to write a wish on a piece of paper, put it back in the bottle and take to the grave. Leah had bought some lovely flowers. So first we visited the grave to say hello to nanny and leave her presents 😢

Julie had come up with the idea of visiting Bibury Trout Farm 🐟 so off we went.

Luckily it was a lovely warm sunny day, so we wandered around the farm just watching the trout swimming around and throwing food to them.

We stopped and sat in the garden of the cafe there and had a cup of tea. And a piece of cake which, obviously, I didn’t like. The intention was to fish and hopefully catch and take a trout home, as when mum went once before she really enjoyed it, but you have to kill it yourself and when we stood watching others doing it, we could hardly bear to watch and hated it, so that never happened!!

We then drove for about half an hour and went to a Toby carvery (one of mum’s favourite places to eat) for a late lunch/early dinner. I had some roast beef everybody, roast potatoes and veg. It was actually very nice. Then I had some ice cream in mum’s honour with some mint matchmakers in it and a flake. Ate some, big sister made me give her some matchmakers and the flake!!! 😝

Home time.

Think you would have liked our day out today mum.

Tuesday 26th May

Today was just a bit of a tidy up day as nothing had been done over the weekend. Lots of washing, odd jobs. I hate housework.

Saturday 23rd to Monday 25th May

Me and Gary walked to the town and met Robyn in Cafe Nero for a cup of tea on Saturday afternoon, when she had finished work. Had a bit of a random walk around the town. That was about it for Saturday!!!

On Sunday we met Robyn, Julie and Hannah and went to Hobbycraft, then to the garden centre, then to Sainsburys. All in Bicester. In Hobbycraft Hannah bought a new scrapbook for some more of her photos. I bought her a scrapbook for Christmas which she has now filled. I hope I feature a lot in this new one too Hannah 😜. In the garden centre Robyn bought herself two voodoo dolls.  One for confidence and one for negativity!! We also stopped for some lunch. I had already had a bacon sandwich for breakfast and really wasn’t hungry, but they would have all been on at me if I didn’t eat anything, so I bought a cheese scone and some crisps and ate about half of each of them! The others had toasted sandwiches and Robyn a jacket potato, and they all came to the table topped with a real pansy flower. Julie asked the man who bought them if they were edible or just for decoration. He said yes they were edible. So of course, Julie decided to give it a try. I think by the look on her face they were rather awful. In Sainsburys we all bought various foods! We then went back to Julie’s for a cup of tea. That was Sunday!!!

Monday was a shopping trip to Oxford. I needed to change some jeggings and I got a couple of little pressies ready for Robyns birthday, which is coming up in June. We then went to a nearby pub for an early dinner. Nice.

And that was the Bank Holiday weekend over and done with.

Friday 22nd May

Just another stay at home day. There was no phone call from the hospital so my results must have been okay. And in the evening Gary cooked me steak and chips – bit of red meat everyone!

Thursday 21st May

Clinic day again. It soon comes around!

The coordinator told me over the phone that I needed to be there for 9.30 so they could take my bloods and see the results on the same day, as my levels had been abnormal. But when I went in to see the doctor he told me I didn’t need to wait around for the results, they would just ring me like they normally do if there’s any problems. 

My liver is now working normally. My kidneys and blood results are still misbehaving. But like they always say to me, I am doing really very well for what my body has been through, and everything should settle down in time. More of my tablets were reduced. The surgeon the other week prescribed me iron tablets, this doctor advised me to stop them and get my iron through my diet, so again eat red meat and more spinach. My weight is staying the same, where by now it should really be going up a bit apparently, so I need to eat more. HELP …

Gary took me to clinic this time as no one else was available. So after we had finished talking to the doctor, we left the hospital and went to a local farm shop and restaurant for a breakfast. Sausage, bacon, scrambled egg, beans and toast. Very nice indeed. And this time I made myself eat the whole plateful, as when I went with Robyn a few weeks ago I could only eat about half of it, so yes I guess I am improving. Quick walk around the farm shop, then back to the QE for my dietician’s appointment.

Same as always was said. Eat little and often and try and add more snacks in between meals to increase my weight And she’s writing to my GP again to get him to prescribe me some different build up milkshakes because the first ones she advised for me, he couldn’t get hold of. (Oh fiddle, I thought I had got out of that one 😉 ) I must be doing something right though everybody, because my grip strength test went up to 15, where it had been just 11.

It was a lovely warm sunny day. I think as Gary had the day off work he wanted to make the most of the rest of it, so we drove to Brindleyplace which is where four canals meet each other in Birmingham. We walked up and down the towpaths. It was really nice. Then we drove into the Bullring to wander around the shops. We also walked right through the shops to Victoria Square at the top. And, thank goodness, we then sat on the wall by the fountain for quite a while, people watching. That was good fun. I love doing that.

My legs and feet certainly felt it. I had definitely done my share of walking today.

Time to go home at last. We got stuck in all the traffic on the motorway and by the time we eventually got home, we had been out for 12 hours.

A busy, tiring but very enjoyable day 👫 👣☀️

Wednesday 20th May

This afternoon I had a cup of tea with Marion. I used to work with her quite a few years ago when I worked at the hospital, and we still bump into each other every now and again. As I want to walk into town and back on my own now, I thought this would be a good test, as her house is probably about half way. I managed it perfectly fine. And I left the house on my own!!! 

We sat in her lovely conservatory (I’ve always fancied one of those). Marion told me about a nurse’s partner that has also just had a liver transplant around the same time as me, and lives in a nearby village! Small world. He’s doing okay at the moment too. But another two ladies that we also used to work with are suffering with different cancers at the minute. Made me feel really quite sad. They are both really nice people and do not deserve to have to go through this. Like I have said in a previous post, there is always someone in a worse situation.

Tuesday 19th May

My friend Nina took me on a trip out today. We went to a garden centre near Cirencester. Had a wander around, then stopped for a cup of tea and I had a massive jam and cream scone (of course I could only eat half of it). Nina had a coffee, and a strawberry and cream meringue. Then we wandered a bit more. It was lovely to get out, have a good old gossip and catch up. I hope we can do it again very soon (hint hint Nina).

Maybe on a drier day though? On our way home we went through an amazing hailstorm. It literally sounded like the hailstones were going to break the windscreen at any minute, they were so hard and heavy. The wipers couldn’t keep up with it!

While I was in hospital Nina laid out various crystals for me. 

Different ones are good for different things. The photos are of me and Nina in the sea, and me with my mum and dad. Both from a very long time ago but both also very special. 

When I was due to come home she put out the crystals for rebuilding confidence, well being and calmness. I could have done with the last ones being out during my stay in critical care though!

And she wrote a poem for me –

I am trying to grasp it, this transplant of mine
But it’s proving so difficult as I’m confused all the time
I seem to have lost a few weeks of my life
And during that time I’ve found a will to survive.
My beautiful daughters, Gary, and my family too
Have given me the strength to fight and pull through.

You have to forgive me on difficult days
When I am grumpy, non-compliant and unfriendly in ways
I don’t really mean it, but sometimes I’ve had enough
And really, if you could see it, this hospital food is not exciting stuff.

Leah keeps eating my sweeties, and Robyn pulls my hair
Jack keeps telling me porky stories and Tom is just rare.
When I get Leah’s phone to see the taping she’s done
I will remind her she’s not too big to have a slap on the bum!

Robyn is bossy and she’s going to have to learn
That it’s only while I’m here that she can have her turn.
And I know they don’t believe me – but the nurses do make me eat chains
I know this is real because my dreams are the same.
And I am telling you all now, and you better listen too
I’ve still not forgiven any of you – for not taking me to the loo!

Good that 📝

Nina also made me some little tiny cheesecakes and some chocolate crispy cakes when I first came home from hospital. 

A lovely friend 😀