I now know where I am going

My study took place over two days, Tuesday and Wednesday.  These are very tiring days and by the time I reached home I did nothing but crash out.  I was gutted not to have met up with Jacqy Harris but she was on her way out as I was on my way in, so frustrating as this was due to an unavoidable flat tyre!  I did get to meet up with Gem Cousins who had the best results ever for her ph.  Going from a stage 4 to a stage 1, her best walk test ever and to know that now they only want to see her once a year, what a result.  This now means that she can hopefully go back to Australia and continue with her medicine regime over there,  I couldn't  be more pleased for Gem. They have also said that they are not now going ahead with the hope of getting her on the transplant list.  Needless to say Gem was ecstatic and I was too for her, I always love to see people improving so much and this gives hope to so many more of our ph friends. 

 I missed out on seeing Steph Ingram as by the time my testings were done and infusion I just needed to get home, I was, as I said very very tired.  I have been in touch with Steph since who said she had a long afternoon and she has to go back for more tests so I hope that nothing sinister is going on and that something can just be tweaked.  Sending warm love Steph. xx

As far as the study is concerned I got it wrong last time when I was convinced that I saw a pouch that was very very dark, I wrongly assumed it was ferritin and that was what was infused.  Imagine my surprise then when I saw a similar bag being delivered yesterday, same colour etc. very puzzled I was.  The infusion is blind, meaning even my nurse did not know what was infused so she was required  to leave the room whilst another one took over and as I walked out of the door I saw a very dark bag, made out of material that they obviously cover the bags that come up!  Now I do believe I had the ferrinject yesterday as my eyes have more red when I lower the lid and this is a sign of more iron in the body than I had before.  I hope it gives me more energy but we shall see.

Talking to my specialist

I saw Charlie who many of you will know on here.  I love Charlie and he is always a very willing listener.  When he asked how I was feeling and I told him of my decline and that I now wish to have the hickman line he listened with a very patient ear.  Having been told I needed to go back on it over eighteen months by two doctors and being told by two others that it was too early I just coped.  End of coping now as I need to push back my levels.  Though my MRI and ECG showed very little change since three months ago I know full well, as indeed do our doctors that our lungs can still be getting more compromised.  Charlie said that if I wished to have it back then he knew there was something not right as I have been on the line before and to want it back means that I really must feel bad and we need to try to stop worsening.

We agreed that I would finish this study that ends in three months.  I don't wish to stop this as it fits in well with my plans for two holidays coming up.  He has said that when I return in September we shall discuss the line fully and go down that route.  I at least know what to expect and know of the benefits it gives us as it helps our lungs and consequently our hearts to recover somewhat.  I have been looking around the house trying to see where we will fit all this extra medical paraphernalia in.  When I had the line before we didn't have Izzy who seems to have taken over every corner of this place with all her cabinets full of crafts,, toys etc.  We shall sort it.

America/Orlando

Once again a bigoted person decided to take the lives of 49 and maybe rising people and injuring around 50.  The stupid thing is his father said he didn't like gay people yet it appears that he was gay himself!  My heart went out to all the families affected by this horrific crime and to America as a whole.  We shouldn't have to endure things such as these happening in the world.  I have hatred for his wife who knew what he was going to do and didn't ring the police.  For her part in this she should be given a whole of life sentence to my mind.  To see the guns in the house, to even go with him to suss the place out makes her culpable.  He was even planning on gunning people down in one of the Theme Parks.  I know there will be some who don't  agree with me but we need to get tougher.  Yes he lost his life, the ultimate price BUT he didn't suffer as many are doing now.  He should have been severely punished with many sufferings, tough ones first and then maybe show others that WILL come after him that it will not be tolerated.  Maybe tying him to two cars and pulling him apart whilst alive.  Barbaric I know, against human man rights I know but what of the rest left grieving,  others coping with terrible injuries  and America as a whole who feel the pain of what this man did.  Some countries have it right with their barbaric punishing ways of ending lives.  He did not care who he hurt, nor did his wife. He certainly didn't care about all the suffering caused in the aftermath of his deadly deed.  He laughed as he gunned them down.  My heart hurts for America. 

Poor little mite

Again America and in a Theme Park  Lake Buena Vista.  A two year old little boy Lane Graves was playing, enjoying splashing about at the edges of the lake with his four year old sister.  A lovely family day out turned into the worst nightmare for any parent when an alligator  snatched the little boy and pulled him into the water.  Though the boys father battled to pull his son free from the grasp of the alligator his fight was in vain and the boy was pulled further away from any hope of a rescue.  

An intense search for this little mite was made and 16 hours later on Wednesday he was found by divers only 10 to 15 feet away from where he was taken, six feet below the surface.  The story is that his body was completely intact which must be a mixed blessing for his parents.  Not that anything can make them feel better right now but I think in time it will offer a smidgen of comfort.  

There were signs up around the lake that said nobody was permitted to swim in the water.  Who would have guessed that just splashing about right on the edge could have brought such a terrible consequence.  My heart goes out to the family.  He looked such a lovely boy and the life he should have had has gone.  I feel very sad right now,  blessings to his family and every who knew him.

Selexipag

Once again when I asked my specialist about this drug on Wednesday his answer came back very swiftly that no, we were not having this drug.  As I said before NICE has said no but there was to be another meeting in June where our specialists were trying to overthrow this.  Has this meeting gone ahead and  and we are still being told NO.  I do not know but I will endeavour to find out.  This would have been the drug of my choice instead of the line but as there is nowhere else to go I will take the hickman line.

Holidays are ahead

I will be unable to post whist away as on the ship the wifi is very iffy I am told and I refuse to pay 55 dollars for a couple of hours of nothing which is often the case.  I am hoping to get updates when we are off the ship but we shall see. 

Packing is going on in earnest today, I hate this, so very stressful.  On this ship, Celebrity Eclipse there are no laundries as there has always been on other ships.  I love these as we dot need to take many things and a quick wash a few days into the holiday and we are all clean again.  So it will be that we shall have to send all our clothes to the ships own laundrette so I need to make sure I have enough clothes to last for a few more days as they rarely cone back the same day.  Underwear will be washed in the cabin and draped over the shower door, I hate this.  Never mind, such trivial things really.  My most important thing is to make sure I have a plentiful supply of my medicines, these are not the type we can find on board or in any port we enter.  I have checked twice to make sure all mine are correct and that my extra supply is all good to go.  I bet I check again later, quite paranoid about medicines but at the end of the day they are our life savers so we need to be. 

Decorated sick bowls

I often take a sick bowl with me when I leave the hospital as I have been known to not tolerate the drive home too well.  Sometimes these bowls are not used but sit in my medicine cabinet in case they are needed.  One was well used the other day when we had Izzy here from school.  I made her a lovely tea but she said she real didn't want any.   She said she had a tummy ache.  After cuddles which she couldn't find a comfortable place and sitting and standing all over the lounge trying to stop her tummy hurting I sat with her on the sofa.  She said she felt sick so grandad leapt to the rescue and handed her one of our sick bowls.  Oh yes it definitely came in handy.  We have a couple more so next time she is here I shall get her to colour them nicely ready for if she needs one again.  Very handy they were!   

Sir Cliff Richard

I read in the news that at last  Sir Cliff Richard has been told there will be no prosecution taking place over the abuse allegations and he rightly slams police who named him a suspect before he had even been interviewed.  One of the young boys who made an allegation could not even describe where the offence took place.  I like Cliff  Richard and feel sad that he will no longer live in his home in the UK.  I feel that many people, on seeing all the furore caused by Jimmy Savile jumped on the band waggon.  Though it is true it has also brought to light many more creeps, Ralph Harris being one there are many more that have been proved to be innocent.  Cliff looks gaunt, who wouldn't be having this hung over his head for the last TWO YEARS,  I wish him peace now and a return to the life he had before all this reared its ugly head.  

Scotland

When this cruise is over we are going to Scotland so we have lots of things to sort out for that trip as we are going in our motorhome.  Sadly our friend who was to travel with us, though in his own motorhome will not now be coming due to having the need for a few tests.  Health is more important but I shall miss him.  All our plans for the holiday were for the three of us and now we are down to two.  Colin and I were talking barbecues etc and planning on what we would cook.  I also know how much he loves potatoes so I was planning some of the meals around him.   In the main though we will eat out but three and a half weeks is a long time to just eat out when it is such fun to cook in the motorhome or outside under the canopy.  Though our friend would have cooked some meals for himself I was having nice thoughts of the three of us cooking outside, well Colin cooking whist they had a glass in their hands and were talking about what the day had brought and what to expect tomorrow.  I am so sorry that he can not be with us on this trip but hope that health for all of us means that we shall do the trip again.  

House hunting

This is sill going on.  We did see an amazing one but all that needed doing inside was just more than we wished to tackle and in truth we would have been mad to take on a garden as large as this one.  My daughter wants to move too so we are looking for two houses, never easy pleasing  everyone.  We are all meeting tonight to look at a house both her and her guy likes so this should be very interesting.  The one we saw last Sunday Izzy was desperate for her mommy to buy it as in one of the bedrooms it had a model mini cooper remote control car.  She thought everything in the show house remained so claimed her bedroom with the toys in.

I shall be thinking of you all whilst I am away, you are all so much a part of my life now.  Generally when I have gone away something happens.  Kath Graham got her transplant, Stacie Pridden got hers.  We sadly lost Hazel Roberts who received her transplant but lost her battle due to uncontrollable bleeding, as a personal friend this was so hard to take.  Please let us hope when I return all is as it should be and nothing bad happening to anyone.

Once again my friends thank you for clicking like on this blog, for the shares if you so wish to do so and above all thanks for bothering to read my ramblings 

Warm love to you all

Carole xxx