Monthly Archives: April 2016

Inspiring man

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Thursday 21st to Friday 22nd April

My day off. All my volunteering checks still have not come through yet so I am still waiting to start at the hospital. It’s taking too long 😏 

So I walked along the town this afternoon to meet my sister Lynda in Caffe Nero. Hannah had the day off work so she came along too. And then Robyn came along for a little while in her lunch break. 

My usual evening walk was extended this week. When Kate met up with us she said that the town mayor was going to light a beacon as part of the Queen’s 90th birthday celebrations. The Queen lit the first of a chain of a 1,000 beacons being lit across the country and worldwide and there was one in little old Chipping Norton! We got there too early, Kate had got the time wrong! so we had a bit of an extra walk around and then went back to watch. Amazingly in my picture it seems to be in a perfect heart shape!!!

So anyway, this longer walk meant that I did 14,958 steps today, 6.26 miles. And while I was at home doing some jobs throughout the rest of the day and evening I had climbed 58 floors!!! No wonder I was tired 😲

When you have read about Rodger Webster you will see he is a very inspiring man. And in the article it says he’s now encouraging others to challenge his donation record. Robyn, are you up for it? You still have many more pints to give πŸ’‰  I also hope some of you out there are up for the challenge too? If you’ve never given blood before why not start today and go along to your local donation centres.

Friday was just a morning at work with nothing else exciting happening to me – unfortunately!

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Indecisive

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Monday 18th to Wednesday 20th April

I did some odd bits and pieces in the town this afternoon before I went to meet my friend Jackie for a cuppa and a catch up.

Then off to my doctor’s appointment to get a couple of things checked out. She told me that I have a wart growing on the top of my lip (Robyn finds this absolutely hilarious by the way, such a lovely daughter isn’t she!) which apparently is as a result of my anti rejection medication. Because my immune system is so low it hasn’t fought off the wart virus in this case. I also have a mole that needs to be checked out for skin cancer. So she has referred me and I should get a phone call with an appointment to see a dermatologist within 2 weeks. She also said that as I will be going to the hospital then I can ask if they will freeze the wart for me at the same time, but if they won’t I will just have to buy an over the counter treatment, as it is seen as ‘cosmetic’ which is not funded by the NHS!

It’s great that my tacrolimus is looking after my liver but it’s now causing me all these other problems 😏

On Tuesday I just worked extra again until 4pm.

I didn’t feel very well at all on Wednesday morning while I was at work. I was extremely weary, my whole body felt very heavy and was aching and at times I felt very sick. I had also found another outbreak of my Shingles type virus too, in yet another place, which is not nice and also can make me feel a bit unwell for the first couple of days. I seem to be getting these more and more frequently now. More of the joys of a very weak immune system I guess πŸ˜”

At least I had something to look forward to, well kind of! I was going along to the salon later for Robyn to do my hair. She had told me she thought I should have my hair darker with a few blonde highlights now as my hair seems to have changed again and is growing back much darker (with less grey in it can you believe!) so my roots are always going to show much more. I had been warned earlier in the day by Robyn that I needed to try and think what I wanted to have done myself as it really annoys her that I can never make up my mind. I still couldn’t really think so I had decided to go with what Robyn had suggested but I told her that I DID NOT want symmetrical stripes of blonde down each side of my head. Robyn got cross with me then and said that was it, she was just doing my normal colour again, she knew I wouldn’t be happy with it being darker and she couldn’t cope with the stress of it all!!! I think she soon forgave me though as I still got a nice hair wash with a head massage.

Sorry Robyn, I know I’m a real pain πŸ˜–

April snow

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Friday 15th to Sunday 17th April

This I think is a fantastic idea. I think it would definitely help to encourage more people to give blood if they were reminded of their good deed when the blood actually gets used.

Friday wasn’t very exciting I’m afraid, I went to work and then just gave the kitchen a bit of a tidy, among other things, in the afternoon.

Saturday and we woke up to snow this morning!

As you can see it didn’t hang around for long. Weird weather πŸŒ¨β›…οΈ

The morning started off well for me as I sat and did a bit of online shopping. I managed to find a bomber jacket that I have been looking for that is made of suitable material so that I can iron some letters on the back of it to promote my website. (If it is successful I will show you a picture!) Also there was a promotion on the delivery charge today which made it so much cheaper. That made my mind up for me, I like a bargain!!! Order sent.

While I was doing this Gary had made me a bacon and mushroom sarnie which was just delicious πŸ˜‹

Then we went into Banbury and looked round a few shops. When we came out of Tesco’s I was stood at the wrong car waiting for Gary to open it πŸ˜‘ He had just carried on to his car waiting for me to realise! It was a completely different make of car but in my defence I have to say it was the same colour. Thank goodness there was no one sat in it, that would have been even more embarrassing. Shows just where my head is at the moment doesn’t it!!!

For dinner in the evening we had fish fingers, curly fries and peas! Kids food πŸ™ƒ

I really enjoyed it. I don’t think Gary was too excited about it though!

On Sunday I went back and did a few jobs at home. Gary popped down to put some more grass seeds on the lawn as there was no growth at all from the other ones he had put down :/ Then we went along to Julie’s with Robyn to see what was going on there! She was out in the garden painting her new shed. Gary soon decided he needed to help!! Hannah made us all a cup of tea and gave me the thinnest slice of cake I have ever seen πŸ˜€

In the evening I signed my new consent form for The UK-PBC Genetics Study. I always take part in any research I can. If I can help all these very clever people to find a cure in the future for PBC then I will be happy. It’s a bloody horrible thing to live with. They now want to make this particular study bigger and better so they need a new consent form signed for the extra information they will be collecting. I am looking forward to doing my bit on this next stage for them.

My dad died 22 years ago today. Just a few weeks before Leah was born. That’s a long time to be without your dad for 😦 I can still remember that evening so clearly. I wish I had a chance to be able to share all those missing years with him 😒

Lots of steps

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Wednesday 13th to Thursday 14th April

As soon as I got up this morning I didn’t talk to Robyn! It was either a shake or a nod of the head or a thumbs up or whatever. The trouble is she soon realised what I was doing and she started to ask me complicated questions that were too hard to answer that way. I even wrote one down on a piece of paper! A big wave as she went out the door to work. It was a good bit of fun πŸ˜‚

Then off I went to work too. I just stayed on and worked one hour longer today. That was a bit more manageable.

5 myths about organ donation I do hope that all of you that read my blog have decided to become organ donors and, most importantly, have told your families about your wishes. And of course have got all of them to sign up too, along with your friends and anyone else you may know. If any of them have any doubts, then maybe if you talk to them about these myths in more detail, it might help to put their minds at ease a little bit more. Please do all that you can to help to get more people signed on to the organ donor register. You never know, one day you might need a donated organ yourself 😏

On Thursday I was feeling very stressed. Despite my mood I made myself stay at home for the whole day, no Caffe Nero coffee break for me today, and I made sure that I got on with the various jobs I had set myself to do. I even fitted our new loo seat 🚽 !!!

Robyn bought me a Fitbit for my birthday this year πŸ™‚ I soon discovered there was a fault with it as I had to keep charging it up all the time, when the charge is supposed to last for about a week. So I got in touch with the Fitbit people and they agreed to send me a replacement. I can make much better use of it now I don’t have to keep taking it off all the time to charge it.

Anyway, the point of me telling you all about that is because while I was just in my house going about my jobs I took 3,964 steps, climbed 27 floors (that’s from going up and down my stairs all the time, there are two flights of stairs in my house) and walked in total 1.66 miles.

After my usual Thursday evening walk I looked at my Fitbit again and I had done 10,306 steps and 4.31 miles! Just a bit of useless information there for you!!!

Tasty pasta

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Monday 11th to Tuesday 12th April

When Robyn got back from her gym and yoga sessions we couldnt really decide on what we wanted to do for the afternoon. We had no appointments to go to and no particular shopping that we needed. So in the end we just drove into Banbury and went and sat on a lovely comfy sofa in Costa for a while, so I could do a bit of blogging and Robyn did a bit of her writing. I like spending my afternoons that way! Then we just wandered around a few shops there and came back home.

Here’s another successful ValerieΒ story for you to read. But this Valerie has had her transplanted kidney for 38 years! Big congratulations to her. Let’s hope my liver lasts for that long. But that would make me 86 years old. Imagine that! Not sure I’m going to make that, I don’t think my poor old body will be up to it, it finds it hard to cope with things now!!!

Tuesday was another day when I stayed on at work and did overtime. Why does it make me feel so much more tired? Because when I finish at my normal time it’s not like I go home and do nothing. I do normally get myself a cup of tea and have a bit of a sit down but I soon get back up again and start doing things! Is it the constant concentration do you think?

I did make myself finish at 4.00pm instead of 5.00pm though this time so that I wasn’t dead on my feet and could still go out for a meal with some ladies from work for one of their birthdays. I had a lovely pasta dish, similar to a carbonara. Tasty.

I came across this short video for you to watch, what 200 calories looks like in different foods (my pasta would have been way over this amount with the lovely sauce it had but was definitely worth it). I found the video quite interesting and is a good way of showing the comparisons. All that celery!! Β I think I would still prefer to have that smaller chunk of a Snickers bar though πŸ˜‰

“Beaky”

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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 πŸ’˜) 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…”

 

Memorial

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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 πŸ˜–

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 πŸ˜‹

Transplants

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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 πŸ˜€

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!

Gary the gardenerΒ 

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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 πŸ˜‚

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 πŸ€”

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! πŸ˜ƒ

Awful day

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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 πŸ˜”

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 πŸ˜–