Wednesday, 28 February 2018


This  blog will not be of much interest to many of you as I have been on holiday so not really much PH related news to report except for news of Lyz Clements and sadly the death of yet another ph sister.    I made a conscious decision to not be on Facebook too much as my time with friends in Spain was so important to me. 
I do know that the denervation for Keith, our ph brother in America has had to be postponed as he had the flu.  Obviously they need you to be as healthy as possible to get all the correct readings.  He is now scheduled for the 15th March so he is eagerly awaiting that in the hope of lowering his levels in his lungs.  I certainly wish him all the best but know he will be in good hands.


Lyz Clements had a nasty shock when a bronch test showed there was an issue with the top of her lung  after transplant.  They are hoping that strong iv antibiotics can help this but to be fair it is now just a waiting game.   I have messaged Lyz today and she tells me that it is a small hole at the top of her right airway to the  joining of her lung. Latest scans show some sign of healing but they are pleased they saw it when they did and a careful eye needs to be kept on this.  It is causing air to leak at the bottom of the lung and this in turn can lead to an infection.  Despite this there is a plan in place for her to go home next week but to return every coupe of days or so to have the progress of this checked out.  A scan of the lung will be done in two weeks in the hope that it is much improved.  Though there is still a way to go for Lyz she is still staying very positive.  She also sends you all her love and said the messages she receives from you have been so lovely and so welcome .  She is a trooper is Lyz and I do hope this setback resolves shortly.  

Sadly another loss

I was so gutted to see when I was on holiday that we lost another ph sister.  This was Janet Ayton who lived in Leeds, West Yorkshire.  I believe she had been quite poorly before her death but this would still have been a shock for her family and friends.  It is desperately sad that we continue to lose our ph brothers and sisters to ph, a very cruel disease.


Well how this has moved on.  We now have the roof felted so this hopefully means that we can shortly be in a position to get the contractors in to get the walls done with plaster board , underfloor heating etc.  I do look forward to the day we can actually move in.    

We kept changing our minds about our kitchen and we believed just before we went on holiday that we had got it nailed.  That was not the case as when I was in Spain I decided I wanted to go back to the drawing board yet again!  The problem is, as I have said previously is that it is rather a large kitchen but it has three doors leading of it so getting proper runs is impossible.  We also have a huge corner window to take in the views of the hills so did not want to encroach on this with kitchen cabinets.    However I think I had a light bulb moment (though Colin says it was his! !)  So away he went to his drawing board and came back with a drawing I actually I really  love instead of thinking it would do.  A quick email to my daughter to get her thoughts and she too really likes it so hopefully we have at last got it cracked.  Yes I know I have said it before but this time I have no reservations.  We need to make sure we get the correct granite now and I think we will have a gorgeous kitchen. 

Izzy went into the house just before we went away and climbed the ladder to upstairs.  She was very impressed and we got the seal of approval from her about her bedroom so we are well pleased. Of course the house is still very raw, no plaster board in the rooms, no joinery, no electrics or plumbing but the outline is all there.  Now my task is to find the best lighting for rooms that are not conventional as the roofs have different slopes to them, some are open up to the eaves and some slanted.  It all goes to make for a house design that is different which is what I asked for.  Will have some fun with this. 


We are so proud of her as she has again skipped a level in her piano lessons as she is doing remarkably well.  She enjoys her time playing it and even recorded a video playing happy birthday to one of her friends!  She coordinates two hands beautifully and appears to be quite assured when sitting playing. I hope this enthusiasm continues as we may buy one when we move so that grandad and grandaughter  can both play together.  

She did so well skiing this year, such a shock as she really was not on keen to go.  What a difference a year makes and it has shown just how confident she now is.  She did not want to come home as she was loving the slopes and at the end of her holiday was confidently going up the ski lifts  and down the nursery slopes. She was following her mommy like a duckling and we were sent  videos of her and we were so impressed.  

When she arrived home she cried and said she missed her grandma and grandad!  Danielle rang us and we spoke to her and said she could stay the night here on Tuesday  if she wished after swimming lessons.  She was then happy to go to sleep.  We enjoyed a lovely evening with her and she happily went off to school today through the snow after a good nights sleep.  I am so pleased she still wants to spend time with us as I am aware that the passing of time will make a good deal of difference and other things will be  more important in her life so we make the most of what we have.  Though of course she will never stop loving us of that I am sure. 

Enjoying her half day off school due to the bad weather. 

Our holiday

What a joy this was.  It’s was so unexpected too.  I woke in the night a week before we went with the idea I wanted to see our friends  in Javea, Spain where we used to live.  A nudge to my sleepy hubby at 6 in the morning to get his ideas on this.  He was not so keen as he was heavily involved with the house build and felt he had too much to do.    I left it that day but did set about finding us somewhere to stay,  just in case. There were quite a few places where we could use our friends  villas but in the end we opted for a two bed apartment right in the heart of Javea.  It meant that it was all flat and we could move from the Port of Javea, a beautiful place, to the Arenal where there was much to see as the surfers were out in full force or sit and take a coffee looking out to sea and  watching the people walk by.  

We were so blessed with how many friends we managed to get to see.  In total it was 15 as some were away on holiday or about to go on holiday.  We spent leisurely days talking over coffees or having late afternoon meals with our very precious friends.  We are so pleased that the friends we made whilst living in Spain are still in touch with us and  so it was as if it was only yesterday when we had last met and enjoyed each other’s company.  We still miss Javea and said we could not have picked a better place to build our villa.  

We went up to where we used to live and we were fortunate that the gardener was working there that day.  We told him we were the ones that had the villa built and always went to see it when  we were back.  He was lovely and let us in to see the gardens.  Both of us were delighted to see that both the house and gardens had been kept to the high standard it was  when we left it.  The only small difference in the garden was that they had removed some of the fruit trees, the  fig tree, persimmon, nectarine  and pear trees had gone.  It did make sense as they were not there long enough to use the fruit.  They will retire to it in due course.  Our grape  vines, both black and white  so lovingly planted were still there as were the passion fruit, pomegranate  and the oranges and lemons.  They had put a cover over the pool.  We never needed one as the pool was used so often but I get that it was a great option for them.

I did get a pang when we left but life moves on and we cannot hold back time.  Had we continued to live there we would not have seen much of Izzy, the house being built next door to her  would not exist and getting appointments for my ph would have been incredibly hard so the decision to sell was the correct one.  

Sadly all good things have to end.  We needed to return from our holiday as we had appointments to attend and house build to see to.  I did ask Colin if he was happy he had gone and the reply was a resounding yes.  Our home here was lovely and warm and tidy, Lucy had done a great job so we were swiftly landed right back into our busy life here.

I did need two days in bed to recover from our holiday but to me it was very well worth it for all the memories that were made.


Just got a phone call from a friend so say she was so concerned about me as I had said I was driving into town today to collect my medicines.  She was worried as the snow is really thick today.  I reassured her that all would be well but I am so touched by her concern.  Good friends  are worth their weight in gold 

So there you have it.  Certainly not the most interesting blog for you but I needed to get one out so you did not think I had fallen off the face of the earth.  At least you are up to date with where we are going  with the house over here.  Of course now the snow has arrived so no quite sure if they are in any position to wok inside right now, we shall see.  

Keep warm and keep safe those of you in the UK being hit with the snow.  If you live abroad and are enjoying lovely weather think of us here freezing cold!  Definitely ham shank and pea weather here so i will go out today to buy ingredients.  

Warm love to all and I promise I will try to have more things of interest to tell you in my next blog!!!

Carole xxx

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