I was really worried there for a moment.

Just taken a phone call from Papworth research team to ask if I had told anyone about my going on to trial the drug Tocilizumab.  Well the answer was an honest one, yes of course I had as I always try to keep my family and friends worldwide up to date with the news and this was my latest news.  I was concerned that I had broken a confidentiality rule and was horrified at what was to come next.  The answer was that all was fine.  It appears that somebody had read either my blog or post and asked about it at Papworth but they could not say where they knew about the trial and gave my telephone number!  Anyway it is all good.  Yes we are encouraged to speak about any trial we are on and she was pleased that I spread the word about each and every trial.  Her concern was that there had been a breach of confidentiality at Papworth end of things and this was not the case so everything is OK.  Monday is the day for my right heart cath and then holiday and back to begin the actual trial.

Just  beginning to get myself together again

We had Izzy for three nights.  What a delight she is but it is all go when this child is around.  She arrived bathed and ready for bed on the Friday when Danielle and Chris dropped her off and immediately began teasing grandad and getting him to play games with her.  She is so good but always busy busy busy, you know how it is with children.

Saturday we decided to take her to two museums.  I am hoping she learns to get to love these but not a chance right now. She refused to go into the rooms at Bankfield Museum as it was "full of dead people".  Despite us telling her again and again it was just  huge dolls dressed up she would not have it.  We went on to the toys of yesteryear.  Made us both feel old as most of them were from our era!  These amused her for all of two minutes and then we had to move on again and so it continued.  She did like the dressing up room where we both donned hats and grandad took our picture but that said, enough was enough so on we moved to Shibden Hall, home of Ann Lister and very beautiful it is too.  I began to go "off" in here and had to stop a while as the pain in my chest made me feel so sick and faint.  A short break later and we continued to the car where I said I would be happy to sit whilst they went on the train and the swings.  Izzy held my hand to help me back to the car and looked to be very concerned.  After a rest I came round again so all was well.

Sunday was party day for Izzy and I took her to her friends party and stayed to watch the magician, very good he was too and then on to buy her new school boots.  The two of us then, after bath etc went to curl up on my bed and we watched a film together, this is cuddle time with grandma and then off she went to sleep.  I must say it was hard getting her ready for school the following morning as I knew we would miss seeing her smily face and watching her skipping throughout the place.  I am sure that we will have her soon as the move to their new house is very imminent and we will come in handy then as babysitters.

PH exercise class

This was my penultimate class and so I had to go a few minutes earlier to have my assessment done before the rest of the class arrived.  They were thrilled as to how my times and levels of  being able to do or not do things had improved.  I really did not have the heart to tell them that it is just the nature of the beast for us.  When I went for the initial assessment it was not a good day so my level of being able or not able was not so good.  Monday was a pretty decent day as far as living in the ph world goes so I was not surprised at all.  They are a lovely team and I shall miss them very much.  I have signed on to Breathe Easy to see if that will help me at all.  I also met two people who I like very much and we have exchanged telephone numbers so  hope to keep in touch and see how they go on.  One of these ladies knowing how much I love lemon meringue pie, though rarely have it for calorific reasons had made me a pie!  How lovely that in a place we are all at due to health reasons I made two good friends.

Implanted pump study

http://www.phanews.org/news/implanted-pump-delivery-study#.V_6i1PS6t_o.facebook

Gosh, this sounds incredible.  Instead of changing and re filling pump every 24 hours with all the risks that come with it this one appears to only be filled ever 47 days!  I wish i could be offered that instead of the old ones we have.  Looking forward to this study moving forward and being available to all of us on iv lines.

Haiti

The level of damage and destruction done here is so horrific and the death toll continues to rise.  I still never found out the fate of the young boy we sponsored here for five years between 2006 and 2011 after the earthquake around six years ago. I continued to send my sponsor money but sadly never heard if he survived this quake or not.   I was surprised to read in the Independent that they are urging people not to give money to the appeal by the American Red Cross,  One would wonder why but the answer became clear.  The trust in them is low due to the 2015 report that shows a lot of money given by people such as us has been squandered.  Well I have news for them, they are not the only charity that squanders money.  I have refused to give donations here in England as when I see the size of their palatial buildings right in the heart of London I can see exactly where my money would be going.  It would surely make more sense to build or rent buildings out of the heart of the big towns where it is certain costs will be high. Move away to the edgers of the cities and obviously dave money on the land to build and the rates etc.  Surely as a charity the first thought should be about how much we can get to give away in aid, not how imposing can our offices be.  Of course there may be a perfectly valid reason for them taking up prime expensive space in the big cities but I cannot think of a single one.

Looking at house designs

Not that we are getting very far just yet but is is exciting to look, indeed we were told to by our architects we must be looking so as to give them an inkling of what we liked and what we loathed.  We are sill debating log burner in the house or just the one in the cabin outside.  See I hate the tiny log burners that some have, it is all a matter of preference and I like mine to be quite big taking up all of the fireplace.  I do not mind the hearth in front but I do not like where there is a space at each side.  As we are maybe going eco friendly though this may well be overkill.  Maybe we just decide on a different fire as after all we will have a log burner in our cabin, the type with a pipe showing that leads to the outlet.  I do find myself gazing into kitchen showroom windows just to get an idea of style etc.  I think we will have to really sit down and really consider lots of things we want in this house and begin making lists.

I wish I could be more like the young ones, more laid back.  Danielle and Chris do not seem to be too concerned with any of this, they just know they will sort it, they will find the right kitchen and bathrooms they want as they want to change the ones already in.  I am sure they are not stressing about this at all.  They are not even worried about being given a date to move at the last minute, me I stress! Aaaahhhhh what wouldn't I give to be that age again and know that I had the ability and the strength to just go with it.

Aberfan disaster

I cant believe that this happened 50 years ago.  For those that do not know the story October 21st marks the 50th anniversary of the terrible disaster that took the lives of 118 children between the ages of 7 and 10 and also 28 adults.  The children were waved off to school as usual and this school was close to the coal tip from a nearby colliery.  Not long into the morning, in fact just 15 minutes after the register was called  the tip collapsed sending down over 100.000 of waste and this engulfed the school and a few surrounding houses.   The children that were not killed instantly were smothered.  It took a week to reach some of the dead.  I well remember the horrific sight of row upon row of coffins laid out next to each other.  To make this even more sad is the knowledge that just a few hours later they would have finished for their October break and the school would have been empty.

As I reflect on this it makes me wonder what those children and teachers would be doing now had this catastrophic event happened.  More generations would have been born, more lives enriched by this.  Sometimes life is incredibly sad but the people of this village pulled together  to form a support group called Aberfan Young Wives Club. In the depths of despair they reached out to each other and gave love and support and that club still exists today.

We too reach out to each other and offer knowledge, hope and support but I pray this and sites like it are no longer needed in the near future because a cure is found that makes us redundant.  

What is with the clowns!

In the news the craze that began in America of the scary clowns has reached us here.  I feel they already have two big scary clowns already in the form of Trump and Clinton so why do they need more.  We too have many in our parliament here in the UK, way too many.  Many people have phobias regarding clowns and to deliberately target young children with scary faces means that now even the big smiley faces seems to be so cruel.  Here we are beginning to fine them around £70 for each one found but our police force has more important things to do than to catch them and fine them.  I hope it all goes away after halloween, though I doubt it.  Once people realise they can have an impact, even a bad one then these trends hang around awhile.  I hope my sons girl is OK  She has a real phobia and lives in London where we are told there is quite an influx of these spooky costumes.  One idiot even ran after children with a real chain saw!  How very cruel is that.

OK enough said, sorry to my American friends, not really knocking your candidates for the upcoming election but the debates I have watched in the middle of the night seem not to be about politics but to be about point scoring.  I hope whoever wins does a great job for you in the coming years.  I love America and its people and wish them all the best.

Met up with Marc and Mary Dyer this morning for a coffee.  Mary is doing OK, one or two things going on so back to clinic in a month but still ok.  She says thank you to all those wondering where she is.  She just needed a break from Facebook to concentrate on her studies for the time being and wishes you all well and says thank you for thinking of her.

Go well each and everyone of you.  Thank you again for clicking the like button and also or those that send a comment.  All gratefully received except for one I found only this morning on one of my earlier blogs .  It said something like this.  This lady lies, rubbish and was signed by horsey lady.  Now I know some of you will look her up but trust me you shouldn't,  She is a disgusting low life creature, not on my friends list for sure and the pictures are terrible. If you ever see her on my blog again believe me I have no idea who she is or where she comes from.  All I will say is the horses butt looks better than her face.

Warm love to you all

Carole xxx