Monday, 14 May 2018


Seminar for new insights into pulmonary arterial hypertension

How I would have loved to attend this particular seminar.  It is being held at the Royal Brompton and Professor Martin Wilkins from the Imperial in London along with Stephen Wort from the Royal Brompton are talking about all their ideas for new treatments and of course their hope to find us a cure.  I was fortunate to be in the care of Martin Wilkins for the DCA trial and I know well his commitment to bringing us all a cure for our shocking disease.  Sadly we have decided it will be just too much.  A trip to London from where we live is not just a couple of hours car ride.  It would also mean staying over in a hotel and we just cannot afford the time as our house continues to take that up well enough.  The parking sounds a nightmare at the hospital and the trains and tubes can be very tiring so we have decided to give it a miss.

I am reliably told that there are still lots of ideas in the pipeline and this debate is how to prioritise them.  I hope if anyone one of my ph family attends they will be kind enough to give us a brief synompsis of how it went and of any new ideas.  As ever so many are working hard for us to bring an end to this disease and I will always have hope until all the breath has left my body.  Never say never.

Link to Latest PH News

My little red rooster mask saved the day

OK so it makes people turn and stare, it makes Colin laugh but do I care, not a jot.  My red rooster mask as Colin calls it came in very handy last week when I went down to the new house.  As they were still plaster boarding the air was thick with the dust from where they were cutting it.  As soon as I stepped foot into the house I did an about turn and left to get my mask from the car.  What a blessing. It  meant I could go around the house, stay whilst discussing ideas and thoughts with the builders and still leave whilst I could breath.  I have never been so happy to look so daft before as this mask saved lots of further complications with any lungs.  So smile, or laugh or even ridicule, these masks are here to stay and another order will be made soon for a new supply.

Debate over children

In the UK I have seen a few articles over whether grandparents should be paid to take care of their grandchildren.  As ever there were for and against on this one.  I do "get" both sides of the argument but for me personally the reward is enough to see Izzy growing, being included in all aspects of her life and us helping to shape her future..  I am blessed to have watched her grow into the lovely delightful, funny confidant girl I see for two days each week and her sleepovers.  I think an occasional bunch of flowers is nice, just so you know that your efforts are appreciated and for me that is enough.

When I was down at the new house on Saturday she came out of hers holding a card she had made for me.  It was so sweet, a get well card.  I said how nice it was but said I am not poorly now though Izzy,  am better.  She smiled sweetly and told me to save it for when i was next ill!!!

I was sad to note that there is still bullying going on in playgrounds for children with red hair.  Quite why people bully over this I have no idea as red hair is stunning.  We have a grandson with the red hair and I also had a friend who had beautiful red hair.  We went on a cruise and often people remarked on how lovely the colour was.  How sad to see that children are bullied over such a detail.  Bullying can destroy a life, sometimes even leading to suicide as we see is happening more and more nowadays.  Beautiful lives gone in an instant, all that potential lost because of some sad person or people being awful to them.  It hurts me to read this and I wish we could stop it but I do not see how.  I pray Izzy never gets bullied and continues to have a happy school life ahead of her.

The house

Well what can I say!!  Colin works so incredibly hard on this.  This weekend he was digging trenches ready for the gas service to be fitted.  It was made particularly hard as the trench had been dug previously by him but as ever builders rubbish and been thrown into it, big lumps of concrete and bags of sand etc.  Where cement and sand had lain together as it rained of course it turned it into a solid immovable mass that had to be pick axed into pieces before being taken out.  I hope today things come to fruition and he can complete it to the satisfaction of the gas board and then that is another job put to bed.  Izzy came out to help him with a fishing net and her gardening gloves on, yes very helpful Izzy.

We haver chosen and ordered all the new electrical equipment for the house except for the extractor.  We do not seem to agree on the style of this one so we will keep looking.  The doors, oh those internal doors - we need twelve and it has been a nightmare choosing them,  do we go for a nice grey colour as this seems to be the trend, doors with strips of aluminium in them are also all the range now.  We have oak doors here and so want a change so they were out.  Think of the painting if we go for white doors, the list goes on.  At last we decided on a really lovely door, yes white but a little different and we are having them pre finished.  This means six or seven coats of paint are applied in the factory and the result is a door so smooth that can take knocks more than if we painted them twice.  We think it is worth the money as the thought of all the work getting these doors to a lovely sheen would be a nightmare.  Oh to be young again when things like this were not of any real consequence, we had the stamina to do anything.

A plasterer arrived to check out the house and to give the builder a quote.  It was gratifying to see him stay and look at the views from the various windows and tell us how lovely it was.  It makes me more determined than ever to get into this house and enjoy all that it has to offer.

Karma - for sure

The day has been so gorgeous I decided to go and see what was happening on the canal.  Lot of boats but not many people walking at all which surprised me.  All was still and peaceful for a while until I heard a lot of shouting behind me.  I turned in surprise as they were shouting so loud to see two men on bikes racing each other on the side of the canal!!  Sheer lunacy.  Well I was not going into the brink for sure over these two lunatics so i moved closer to the verge and away from the canal side.  With shock as they came by the side of me I heard a squeal and a clang and clatter and one of the bikes, along with its owner went head first into the canal.  How on earth his companion managed to not follow him is a surprise as he was right on the edge.  In an instant the one in the canal was cursing and attempting to get out of the water whilst his friend laid his bike down to help him.  What did surprise me was their ages.  They could not have been less than 30 year old each, maybe more.  Now maybe stupidity can be expected in the young who have not been taught better but the sheer madness of these two was beyond me.  I left them to it and continued.

Not too far on from this I looked into the canal to see a baby pigeon flapping its wings and wandering all over the water.  It clearly could not fly out so obviously something was wrong.  A couple were headed my way so I told them of my dilemma.  I clearly could not leave this bird to die, it was in distress.  They agreed and we three waited until it flapped its way to the side where the young man carefully reached down and lifted it from the water.  What an awful sight.  It had obviously been badly hurt, attacked by a crow maybe but anyway all its head was in a terrible state.  There was no way the bird was coming back from this but I have to confess I could not ring its neck, not even to stop its distress and neither could the other two.  Awful though it sounds we left it settled on the verge in the hope that its end came soon or somebody else saw the state and could do the deed.  Goodness I do not kill spiders, I lift them carefully and take them outside.  This has left a sour taste in my mouth I confess and I hate my cowardice but there it is, I am being honest.  Poor baby bird.  

Hope you are all taking advantage of the good weather we are having as I believe it is going to change by around Thursday.  I intend to make the most of getting out while I can though the heat really gets too much for me.  I just do what I can then hoe to rest.  Enjoy it doing what you can.

So all for now and I love you all and leave you and say many many thanks for bothering to read my rambles and for the comments and the likes.  

Warm love

Carole xxx