Friday, 1 November 2019


To be totally honest I have not felt the best for a few months but as we ph fighters are tough I have tried to carry on without showing the outside world. I still achieve most of my daily goals as I push myself but then the price is a very early night or even afternoon in bed.  I tell everyone who asks I am doing OK and I am - sort of.  I know I am blessed.  I see many in such a worse place suffering with this but I also know my own body and I know how I feel.  My right lung is quite painful now but not so sure of why. My breathing is getting more laboured and you know how it feels when it just seems too much effort to do that so small thing - well I have now hit that mark.  I am hoping it is that I did so much on holiday it is just my body's way of getting me to take a break but we shall see.  If no improvement soon I shall definitely discuss adding another med, maybe the selexipeg that we did discuss before.  Yes I know the awful side effects having had the infused version at the beginning of my journey but I also know if I can bear to ride out the storm the future should look more rosy.  We shall see.  I do have an appointment coming up next week to check the new chip inserted so I shall discuss this with the team when I see them.  I know to look at me I look fine, to talk to me I do not let it show but oh my word inside, well I know how I feel.  Who knows maybe upping my water tablet could be the answer though how anyone can wee out more than I do is beyond me with the dose I take now.  

A good friend Taylor who lives in the USA contacted me to say that one of her young friends, a married mom with twins has been diagnosed with ph. Clearly they are all gutted but I know if she comes onto our closed pah group she will get much support from our community who will do all in their power to help, advise and comfort. I get so much support from the PH UK Support group here and other ph groups I have joined. We are all in this together.

Holidays and friends

We saw so many friends when we were away which was really nice and a chance to just sit and catch up was truly lovely.  We feel so blessed that all these friends take time out to add us to their already overflowing schedules and meet in new places to us to show us how things in Javea and surrounding districts continue to develop.  I am always happy to see that Javea continues with its rule that they will NOT allow high rise buildings.  It is such a peaceful serene place and the views are amazing, high rise would take all of this away.

Freda and Arthur took us to a new bar for us on the 29th floor (no not Javea as I have just said no high rises here) but in Calpe.  There we met up with Ro and Tony and spent time on the amazing sun terrace at the top of this new build hotel..  The views were truly stunning looking all over calpe and the water,  it was a great experience and one I hope to do again.  Afterwards we went out for a superb meal and I swear my waist band grew two inches.  

Lots of meals and meet ups followed and my lovely friend Christine who I did all of my genealogy research with cooked us a most delicious meal, so good I have taken the recipes and will cook them this weekend when we have our friends over from Canada.  I am sure they will love it. 

We went with Christine to the Marina in Denia where the 26th largest privately owned ship in the world was moored.  It looked amazing and by the side of it was just one of the two small ones owned by the same man but costing a mere 8 million and 5 millions respectively.  The main ship is called Lady Moura and the name and emblem showed in mighty splendour on the front of the ship is made of 24 carat gold.  It cost 250 million to build.  At the time it was the 8th largest privately owned ship in the world but time has pushed it lower down the ladder.  

At the same time as we saw this ship we also saw them removing the last of a ferry that crashed into the harbour wall when sailing in.  There were many people on board and it must have been so scary.  It took three weeks to get the cars off, some damaged beyond repair.  It was decided the ferry was old and so they dismantled it piece by piece in the harbour.  The cranes and dismantlers must have been busy day and night with the divers working below water level by the time we got to see it,.  I reckon the captain would have been in a bit of bother!!

One really good friend Rhonda did us the best service she could ever have done  She introduced us to the new owners of our Villa we had built.  We were unaware that the people who bought it after us had sold it on but she knew and got in touch with Paul and Jules to tell them we were on holiday and would they like to see us.  They were more than happy to show us around our old home and it was interesting that we could actually show them some things about it they did not know!  They were both anxious that we would be ok looking around as clearly the villa meant so much to us that changes can sometimes hurt.  We are not that type of people though and to be honest there was no changes really just furniture etc.  We all got on soooo well we felt like we had known them both forever.  On going down from the villa to the apartment I said how we had loved sleeping here when the villa was full of guests that were elderly so we let them stay upstairs in the main place while we were more than happy to decamp to our apartment. I said how we always came around to look at the villa when we were on holiday and I used to wish we were still in it.  To our great surprise both of them said we must stay there the next time we are over - in fact the most generous offer of all is that we house sit their cat when they are due back in the UK early next year!  Now they know nothing about us but trusted us with their precious house. We were overwhelmed and I must confess to crying a little.  However as we just might be facing Colin having his fourth hip op we cannot give any dates and times until he sees his consultant next month. Should all be well though it would be an honour to cat sit and take care of their beautiful home. We can assure them it will be left in good hands, the villa and the cat will be spoilt as Colin is a cat lover.  

The apartment we rented this year was the same one we had last year but my oh my the change.  We thought it would be for the better as she told us she had decorated all throughout.  We had hoped she had got rid of the many vases - huge ones - of the plastic flowers but sadly no, they  remain in the apartment, lots in every room.  The cleaner had certainly not done a good job of the cleaning.  The three of us ( we took a friend) all felt the bedding had been slept in before us so we washed them all, plus the floor was so filthy we needed to sweep and wash all the floors.  Kitchen surface needed cleaning before we could use it and so it went on. There was an issue with the water pumping out into the toilet all night, such a waste of water but that could not be resolved whilst we were there.  The owner was gutted to hear this and told us she was in Spain and would check it out.  She said she had a few complaints about her cleaner and clearly needed to find another.  Anyway she checked out the place when we left and thanked us for leaving it in such a lovely clean way.  She told us she was replacing sone of the things that were so awful, sticky and tacky as she had a five month let coming in.  Such a shame her cleaner was not up to the job as the place itself is lovely.  Anyway we had a smooth journey back to the UK and home.

Home to reality

Well back to hospital visits, MRI for Colin bloods and check ups for me.  Life goes on and we quickly step from holiday mode to getting on with it mode.  

The house is fine and we actually had the architect come around unexpected yesterday to take pictures. Fortunately we are both naturally tidy so all was in its place and he took many pics for a brochure and he promised to come back and take some with his wide angled lens or some such thing and that we could have copies.   He loved how we had finished the house off after the plans were handed over.  I now need to write a testimonial about his company and the great design he did for us.  We continue to love living here next door to our lovely family, 

Today we have a guy making us a barbecue area and sitting area just behind the house.  Then the last thing will be in two weeks fencing and we should be able to say ENOUGH, all done.  

The fox or foxes as there are many did no damage when we were away but I do fear most of my tulip bulbs planted in our beds have now gone for food for the squirrels.  We shall see in the spring when they emerge or don't from their beds. 


First to call for Halloween, Izzy and brother Harry (I think) heading out for the evening.

So back to reality with a bang though we do have a holiday in our motor home coming up with friends. We will take up our life of normal every day stuff. Izzy starts her piano lessons again next week plus she has moved up to yet another grade in her swimming class. We take her to these and we love to see how she progresses. She is just so happy to have us home where we belong she tells us. Though we face timed her every day she still likes to know we are just next door.  

Am going now, I feel rather sick!!!!!

Warm love

Carole xxx

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