At the Ayrton household we seem to have been busy busy busy these last few weeks. What with our holiday, lovely but tiring and hospital appointments for both of us there seems to have been very little time to sit back and relax. My mobility scooter was a blessing but even then I was tiring out very quickly even when I was on it!
This last week we went to Royal Hallamshire for what I believed to be bad news, i.e. being told that the trial was off. I was so wrong and indeed I even had some of my trial exams, more to follow. Sitting down with my specialist David Kiely was rather daunting as he went through the conditions needed to trial and signing the forms. When I trialled the DCA two years ago it wasn't so daunting as it was a drug that was currently being used, though for a different condition. My doctor went to great pains to explain that this was something totally different. This drug was a new one and had not been used on ph patients at all. Phase 1 had been tested on paying HEALTHY volunteers but they have no idea how it will work, or even if it will cause problems for patients with ph and that, in conjunction with the very potent drugs we are already taking, it is fair to say I did wonder if I was doing the right thing. There is nobody else at my hospital trialling this drug and indeed I am only one of five in the UK to trial it, The other 118 patients are mostly from the USA. There are 119 people in total taking up this trial. Two spots were given over to the Hallamshire but only one, myself, have taken it on.
I was told they have no idea what may happen when on this drug in the future too. I understood this as with DCA I have ended up with exfoliative celitus and neuropathy so yes, I do understand there may be a price to pay but what do we do. Refuse to trial potential new drugs, that can't work or we will never move forward, All I can do is hope for the best, put my trust in my A Team who will check me and take care of me along the way, stopping this trial if they see too much damage going on. I am also selfishly hoping it works to help me live life in a better condition that I am currently doing.
A long, long drive.
The day following my hospital appointment we went down to Birmingham to visit the Motorhome
Show. This was a hard day, my batteries were drained and I felt so tired it took me all my time to manoeuvre my scooter around, I just wanted to go to bed and sleep. Though we looked at all the motor homes in show we both agreed that as yet we have not seen one that betters the one we already have so we decided not to change it until we see one that can beat it. As the one we have is still under warranty it is not a problem. I don't travel well on long journeys and this certainly took it out of me.
Weekend away for the guys so just chilling!
Friday Colin set off to Budapest with his friends for a weekend, seems a long way to go but once a year a member of the group has to pick a city and do all the organising. It is a place Colin, and indeed most of the lads have not been to so I feel sure they will have a lovely time. I went to my granddaughters school to see her receive the head teachers award for good maths, a very proud grandma, and then out for lunch and then went home to rest and I felt I needed it,
Saturday I did very little but a bit of shopping for my elderly neighbour who was quite poorly. I was very lazy and bought myself a ready meal from Marks and Spencer and was in bed early, though not to sleep, sleep eluded me and if I slept two hours it was as much as I got.
Sunday, church in the morning and then I must confess to going straight to bed and here I am whilst typing the beginnings of my blog, Colin should arrive home about 11.00 pm and I hope he does not make too much noise putting his things away!
What a bloody mess for a Monday morning!
Woke up after quite a reasonable night. Colin arrived home at a respectable 11.00 but he was tired and as I was too we decided to talk about his trip to Budapest in the morning when we were both rested. I woke before him and put a wash on of his dirty clothes from the weekend. My husband just looks at clothes and then into the wash they go. Hence we had a huge pile of the things he had used in Budapest, some he would have only worn for around an hour or so but then into the wash they went. I am all for being clean and fresh but this guy takes the biscuit, honestly. I have seen him put a t shirt on and then change half an hour later and that shirt is in the wash, even though he may need to put another one on when he returns from wherever he felt the need to change. Anyway I switched the washer on and went back to bed to talk about his trip. I turned over in bed and felt it, the dreaded nose bleed. A little blood goes a long way and in this instance it went through to our mattress protector, which served its purpose well and indeed protected the mattress. Now I am left with sheet soaking and two more washer loads of washing to go in.
Present for me or him indoors.
Colin had brought me back a present. We don't do presents for such short trips so I was intrigued. He said he bought them for me to use up his Bulgarian money at the airport. It was a box of chocolate things of all flavours. I don't really eat chocolate so I ask you, who gets the present! He also bought for Izzy a rather intriguing little wooden box, very pretty that has a secret way of opening it. Very very clever as it takes some doing to find the hidden key. I would never have found it in a million years.
Now I am off for my routine bloods to my local hospital. On Thursday I have my dental appointment followed immediately by my flu jab. I rang and asked if I was allowed flu jab due to trial and was told yes.
And so begins another riveting day (not) in the Ayrton household.
Enjoy your day xxxxx
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