After a fraught start....... great holiday

Stress levels HIGH. 

I have to say my stress levels reached a peak when Colin rang the taxi company we had hired to take us to the airport at 3.30 in the morning.  He began ringing around seven hours before just to make sure all was in place, no response to his messages.  After trying a few times he received a curt message from the owner of the said company saying that "he was on holiday but his wife would ring us in the morning". WHAT, we were leaving at 3.30 a.m. and supposedly in their taxi! Colin rang again and left a message telling him this and the guy in question got back with the reply, "oh yes I remember now, don't worry you will be picked up by another driver, he has a pick up first but it should be ok!   Revisions and contingency plans were made so that if needed we would go in our car to the airport and leave it in the long stay car park. This would not be our preferred choice due to the walk, my oxygen, all bags etc. so we hoped all would still be well and our taxi, booked weeks in advance would turn up and away we would go.   We left our place and went down into the lobby at around 3.20 and waited, and waited and waited.  At 3.50 a taxi driver pulled up and said he had a problem, there was an elderly gent in the back that needed running home, a round trip of around eight or nine miles.  Smoke was pouring from Colin's ears by this time so ready was he to blow! 

Once we dropped the gentleman off we then had to negotiate not one but three diversions on the motorway to the airport.  On arrival it was tough getting through customs on time etc and we made  it to the aircraft just as they were boarding.  We showed the air hostess our permission form sent from the airline to carry my oxygen.  Apparently it turned out that the airline had not notified the staff on this particular flight of it but after speaking with the captain they allowed me to use it.  The rest of the journey went well and collecting our car and heading towards Javea went fine.

For the rest of the holiday it was just great.  We met with many of our friends either for coffee on the Arenal or for long leisurely lunches in some gorgeous restaurants.  Colin went biking and walking the mountains with his friends whilst I spent time doing nothing whilst he was doing these activities but just resting under the naya  and one day talking to Rhonda who used to live close by us when we had our place.  She took the time out to come and visit and get me up to date with all the local news.  It was such a lovely time.  Here  is a picture of the villa where we lived for the time we were away. 

The mountain behind this villa is called the Montgo though locally we all called it the elephant mountain as seen from a distance it resembles the head and trunk on an elephant with a cave just where the elephants eye would be.  In the past Colin walked this mountain many times and once, but only once explored the cave which he said was terrible.  It was thick with the droppings of hundreds of years of bat poo etc.  Many years previously some very old jewellery had been found hidden in this cave.  

We took a morning to go and look at the villa we had and is still so close to us in our heart and memories, and to take a walk in the woods opposite,  I wanted to go to the abandoned house where we always used to walk and take friends to see it and to wonder quite how they managed with an outside kitchen, no drains and a well for water. This old derelict property always intrigued me as inside there were rooms housing a great deal of rusty old beds, and I mean a lot all set up in one of the abandoned rooms. It looked as I would imagine  the dormitory of a garrison housing many people.  I would always in season take and eat a pomegranate from the tree outside this house in the woods too.  Sadly I just could not make it to see the old dilapidated villa which shocked me.  We reached the bee hives which were not far from the house but I just felt I had to turn back.  I was gutted as it brought it home to me just how badly my lungs were now affected by this ph.  A walk so easy, so beautiful among the pine trees with the scent of these so heavy in the air was now beyond my capabilities. 

I will return, hopefully with lower levels of pressure in my lungs and go on this walk again and complete it, I am so determined to do this.  I know the time is not right now for me but one day it will come and I will once again be walking this route easily.  I have a plan about this but I can't speak of it yet but if it happens and all is well I shall tell you all.  

All too soon the holiday came to an end and once again we were on our way to the airport and our journey back to the UK, sporting rather a lot of mosquito bites I must say, still a small price to pay for the lovely memories made.  

House news

Well at last all is in place and my daughter and her guy sign for the house and the completion date is the 4th November.  We had already signed ours so at last we can really get on with the plans for our new build,  It is going to be  a very busy year ahead of us so I can only pray that I get some treatment that pushes back my levels. Colin has so far refused to look at any house designs as he never wants to look too far ahead in case something happens to scupper our plans.  Now it is all hands on deck as we deal with the various departments to get us exactly the build we want.  

Friday is moving day for the kids so we will help all we can.  Izzy will sleep here on Thursday night so that her bedroom can be packed up ready for the move.  Removal men in place for first thing Friday morning so we shall take Izzy to school and then help out wherever we can.  We will then collect Izzy from school and take a very excited girl to her new home.  It will be a mess for a few months as they intend to do so much to the house so boxes will be piled high I fear in the garage whilst they are waiting for changes to be made but I know it will all turn out well in the end.  They know exactly what they want and I know my daughter has a great sense of style so between them they will end up with a stunning home.  

Awaiting calls as to where I go next re PH 

 I am waiting for a call from Hallamshire to tell me where we are up to with regard to where I go next.  I am ever hopeful that in the time I have been away something new has come along!  I am still so gutted that we cannot be allowed selexipag, so fed up about this but there is nothing our specialists can do, they fought hard for it but to no avail. Still I have November 12th to look forward to as Hallamshire is having a ph day to keep us up to speed with anything on the horizon and a get together so that  will be very nice. 

Halloween

How quickly does this come around, is it really a year since I saw Izzy dressed to go out trick or treating.  I have no idea of how  it went as not seen them yet but I love the outfit.  She makes one lovely witch does Izzy and I love the  broomstick.......  

As it is a teachers catch up day or whatever Izzy is coming here and should arrive any minute,  She will be very excited as she tells us of the holiday she has just had in Crete.  I know my daughter said she was so proud as Izzy showed off her underwater skills, I am sure she will tell us all about it when she arrives today.

We are having a family dinner  tonight so we will be able to find out all that is happening or is due to be happening re the move and where we fit in with regards to how we can help them with this.  I have a cake made and in the freezer to help to stave off hunger pangs on the day of removal so I am already up on that one.

Baby news

I am so pleased to be a  great aunt as my nephew and his lovely wife Sue are now the proud parents of this beautiful baby girl they have named Anaisha Jade.  I just love the picture of her, she is so cute. Not sure when I will get my cuddle though as they live in London.  I feel sure I will  at some stage.  With her fabulous colouring she looks so lovely and her hair is gorgeous. She gets her colour from her mommy who is from Mauritius and I so envy her this, she need never think of trying to get a tan or using all the fake tans we now have.  I well remember my nephew when he was tiny, I used to love taking care of him and now he is a daddy himself, where does the time go. 

Izzy has arrived

She arrived whilst I was at the hospital having my bloods done. This is really good because if I am with grandad when we first see her then she ignores me and runs straight to him.  Now because I was not home when she arrived  she was so pleased to see me, running over and giving me big hugs. She was so excited to show me her loose tooth.  I am not so pleased myself as that is another  stage of her development moving forward, which is of course good but it does mean I am losing my baby. 

We left to go to  Leeds to meet up with my son  and to see the new shopping centre just opened in the city.  Reputed to have the largest John Lewis store in the UK I must say we were very impressed with the appearance of the mall.  The shops inside were the ones with the high end items for sale and the cafes were really lovely.  One of the small stalls inside were selling all hand made chocolate that was a little different to the norm, being chocolate bottle tops for £2.50 and £6.50 for a chocolate nut and bolt! I reckon some people have more money than sense!  On the down side the mall was on a slope, not so good for people with breathing problems,

Izzy and I went into the House of Fraser to look at some bits and pieces.  I had been looking at some tiny outfits by Ted Baker and Izzy was around six feet away from me looking at something that took her interest,  Well I could not settle as even with there being such a short space between us I was  concerned that somebody may snatch her!  I left the baby outfits and held her hand as we left the store via the escalators.  On the ground floor just before leaving  I said we should put our coats on.  With horror then I saw that I had the hanger of a baby outfit I had been looking at over my finger with the said baby outfit attached!  Another few feet and I would have been through the door and could have been accused of shoplifting,  How easy it would have been as my mind was not in gear.  Fortunately I realised in time and left the outfit behind.  

It is an education shopping with Izzy. She would always ask whenever I stopped to look at something "do you really want that grandma?  When I said. O she told me to leave it then and move on!  X

The day ended with a lovely family dinner and excited talks of all plans going ahead for all of us.

Ph. Ask trial 

This was the trial that I abandoned earlier in the year after only about three months into it, so unlike me as I like to finish what I start but as I wrote in my earlier blogs I felt so very very poorly on this trial. My breathing became very laboured and the headaches were so incredibly bad plus other debilitating things.  I was pleased then to read in the pulmonary updates this month that this trial had been abandoned as it was not showing any good effects at helping our condition, read the link to this here: -   
http://pulmonaryhypertensionnews.us5.list-manage1.com/track/click?u=52c64784d386bd00ea57ee792&id=eba38020a3&e=0946a865ff

This is unlike the other trial medicine I was on and completed that I mentioned a blog or two ago when that particular med showed it worked well for patients with ph.  I loved being part of that particular one, feeling almost normal again whilst on this drug.   The one in the above link was such a hard trial to be on so it showed I was justified in coming off it after just a few months.   

There you have it, I have had good trials and bad trials.  All these are necessary to move us forward.  I do not know if I am headed towards oxygen all night as I struggle so much with my breathing but we shall see, what will be will be but oh how I long for a cure, it is such a struggle for us with ph, an invisible disease that is so hard to live with.

When we were on holiday everyone remarked on how well I looked and apart from bags under my eyes due to lack of sleep I do not show any sign of being so very poorly.  Our MRI's show a totally different picture though so only we suffering ph knows what a struggle it is to do even the most mundane tasks.  Our day will come though, just wish it would hurry and come sooner rather than later.  

I am leaving you now as I need to catch up with a few requests to join our support group,  Thank you so much for taking time out to read my ramblings.  I hope you are all in a good place right now 

but if you are not then for those of you with ph all your ph family is here for you.  Strength in numbers.  For my family and  friends that read this I am so grateful for the support you all continue to show me, particularly when this journey seems too tough a road to be on.  It means so much knowing you are there for me.

Warm love to each and every one of you, take care and once again your clicking the like or adding a comment means more to me than you will ever know, it shows me we are connected.  It matters.  

Carole xxxx