The Good the Bad and the Ugly - but not necessarily in that order!

Our PHA Conference

The good, well that has to be our amazing PH Conference.  Once again they excelled themselves with the way it all worked and the circus theme certainly looked magnificent.  All the volunteers that manned the various stands and did the well being talks after the conference on various techniques of health were amazing I am told, I was too tired to attend any of these sadly and went for a rest after the conference itself.  

How lovely to meet so many old and new friends from our ph world, in particular it was lovely to meet the children we had heard about on our Facebook when talking to their moms.  I met so many new ph people this year that I am not even going to attempt to name them all but I must say it was lovely to spend so much time with Liesl and her husband Stuart, Tess and Tina were a delight to see {twinnies) and Catherine Makin who does not live that far away from me so I did enjoy talking to her and her mom.  Dawn Shelley I can never think of you again without thinking of “mom” as I kept on calling her.   Anna Caroline Bowen was there with her delightful family and I was happy to give a donation to Mark towards his fundraising for the ph society.  What an amazing young man he is and so very lovely to talk to.  We at last saw Harry who was an absolute treasure bounding around with his sister following closely behind, Karen Farminer was there too and It is always a pleasure to see her as she has helped lots of us ph friends over the years, such an inspiration. There are just too many to mention but it was so lovey to see you all.

The conference itself was, as is usual, amazing.  I was so proud to see our Stacie talking about blogging to Ian Armstrong, the chair of the PH Society.  She did very well and I am sure her boyfriend was very pleased to see her on the stage looking as always very beautiful and explaining about how and why her blogs first originated. It is hard to believe that it is such a short time since she was given the gift of a new heart and lungs, she looked the picture of health 

 For me the star of the show was our very own David Kiely, this guy is so very lovely and his talk was informative but also very funny.  I am so proud that he is my own Professor from Sheffield and the one I mostly see.  He has taken calls  from me whilst he has been on holiday and sorted out a problem at my local A and E and the measures he goes to for his patients goes over and above that expected of him.  David is a star and always will be.  I saw him again yesterday in his scrubs in clinic and told him how others with me said they wished he was their doctor.  I am so honoured that he is mine. 

The Ugly

We decided to leave a day early to get to the conference so we could see a bit of Oxford itself.  We had both looked at the hotels and pretty much decided on one with a pool and a gym called Oxford Spires.  For whatever reason we decided to book it the following day after finding it.  On going to bed that night the last thing Colin said to me was don't book the hotel, I shall do it in the morning.  Well he said he said this though I truly don't recall.  So it was that in the early hours of the morning I decided to save him the job and book the hotel.  I found it and looked at the pictures and it really did look nice and I turned to the reviews and they were all complimentary so away I went, or so I thought.  Quite how I will never know but I clicked on a different hotel, well it said it was a hotel, and I believed it to be the one we had decided on, The Oxford Spires.    On I went with the booking and I was very proud when I had completed the task and decided to look again at the pictures.  Imagine my horror when I discovered that I had not booked this one at all but had booked one called Dial House which calls itself a hotel on some sites and a bed and breakfast on some others!  Colin HATES bed and breakfast accommodation and I was dreading telling him.  The price was quite high though being actually more than the FULL price would have been for Heythrop Hall had we have had to all pay the full price for the conference and so I felt all may be well. 

On the way down I did get a few “well I told you to waits” from Colin but my expectation was still quite high but how wrong was I.  Trust me NEVER frequent this place, read my reviews on trip advisor and booking.com.  As soon as we pulled up and saw the grubby curtains hanging from a room, closed, with all sorts of things showing where they were not closed properly should have warned us.  The entrance to where I pushed the bell to gain access to the foyer was grubby and the bell itself looked really dirty I scarce managed to press it.  The door opened to reveal a lady who was maybe from China, in truth I was not sure but a more unwelcoming lady you could not wish to meet.  She gave us our keys and told us our room number without a smile crossing her face and told us not once but three times that we must vacate our room by 10.30.  

Our room was large and overlooked an add on to the hotel with all pipes running down, so we were looking onto roofs, though we could see a tree in the far distance.  The bed was so lumpy and they must have had complaints about it before so they tried to rectify it by putting mattress protectors, NOT toppers on it, not one but two, but they were not the correct size for the bed, being double and the bed king.  The craters in the bed were really bad and we spent a very uncomfortable night trying to sleep. The duvet was really strange.  I asked Colin to pull out the sheet as I am always throwing off the covers in the night but despite this I could not move my feet, it was as if they were in a vice.  I got out of bed to see what the problem was and discovered that all the padding from the duvet had spread itself all around the edges of the duvet so there was none on top of us but this heavy weight all around the edges.  it was awful..  No way was I showering in the bathroom as it just felt grubby so I had to manage with a quick wash and wait till I got to Heythrop for a shower.  

Breakfast from hell.  On entering the room for breakfast it looked very dismal and lacked any warmth.  We were told to SIT so we did do but as nobody came to ask us about our order after a while we went to help ourselves to fresh fruit.  On going back to my seat I realised I did not have a fork so I asked for one and was looked at with disdain, it was quite uncomfortable.  Eventually we were asked what was our breakfast order.  By this time we had seen the full breakfast and it looked grey and unappetising so we thought we would have soft poached eggs on toast.  We asked for them and then realised I had no side plate for toast.  We eventually caught the eye of the only other girl serving, the original scary lady  was obviously the boss and was serving too.  It was this lady that rolled her eyes, gave a loud TUT and went and got me one.  Then the eggs arrived.  I swear they must put poached eggs on as soon as they enter the kitchen in the morning so hard were they, totally unappetising.  Toast fell from the plate that was being passed to my husband onto the tray and was picked up and just shoved onto his plate, he took it off and laid it on the table.  No way was he eating it as we could see the tray was not clean.  We watched as a table was “cleaned” with a j cloth that should've been consigned to the bin many sessions ago.  It was just sooooo bad.  We were leaving straight after breakfast and bumped into another guest who said she too had a very bad back from the state of the bed and couldn't eat the breakfast it was so unappetising.  

The problem is though that they will continue to collect their £118 a night as the hospital was just up the road so people will need to stay close by to family or friends.  It was truly ugly and never would we return.

The bad, well sort of!

I went to my hospital yesterday for evaluation to begin my trial next Wednesday.  It all depended on the results of my right heart catheter, were the results too good then I could certainly not be considered a suitable candidate to trial.  I had been what I call “off” since last April as I could feel myself losing my battery pack earlier than ever so to speak.  Anyway the badness is that it was as I had said all along, my heart is showing more signs of damage and my levels in my lungs up by another 11 since the last time I had a rhc.  I knew this would be the outcome though my MRIs had not shown significant signs of deterioration, the rhc said it all, there was deterioration.   I am not too concerned though as I shall trial the drug, it may well work and if it doesn't then I shall come off and change my meds to either another oral one or, if necessary go back on the hickman line and give my heart a rest.  And so it is…… I go back next Wednesday to begin my trial of the new drug, first of its kind to try to stop the protein that destroys our lungs, it is not an endetholin receptor antagonist as the others are  so I should maybe feel the difference soon IF it works and IF i am on the drug and not the placebo.  As it is a double blind study even David Kiely will not know.

It was so nice on going into the theatre for my right heart catheter to see one of the nurses from my ward and she smiled and told everyone in the room that I was their best patient and always had a smile on my face and l always tried to give encouragement to the other patients.  She said that they knew on the ward a few days earlier that I was to be a day patient and all said how well I was liked and how much they looked forward to seeing me again.  Such a pleasure to hear this as I do my best to always be thankful for the care I receive and always try to help others. This was something our dad taught us when we were very young and we saw how he was liked when in hospital for four months before his death.

Bits and bobs.

Finishing on a good note.  Once again I have been given my own designated driver to my ph hospital after the fiasco of last time and so I was happy to hand over the flapjacks I had made for Dean, my driver. However on reaching my ward so many nurses asked which delights I had brought in today and I had to tell them I had not baked at all for them.  The conference had left me tired and what with that and helping out my elderly neighbour I just hadn't the strength to bake.  There were sighs all around and they said they always looked forward to my  appointments as they loved the cakes I made that they enjoyed with their cups of coffee!  See I always knew it was cupboard love! I had better begin another bake off and start freezing as I shall be gong to the hospital once a month now for seven months, then every three months for two and a half years!   This is if the trial is proving to be worth carrying on with. 

 Daniel  who talked to us at the conference about stem cell therapy explained to me that it cost on average one and half BILLION dollars for each medication from trial to completion, yes you read right BILLION not MILLION and of these generally 39 will prove to be of no use to us and the 40th with be the hallelujah moment.  No wonder our drugs are so expensive and in truth they may never get their money back but they do make a lot on other drugs. 

We went to the hospital with Colin to give blood after we collected Izzy from school.  What a softy she was, so unlike her mommy who used to sit on the edge of the bed for many years when I gave blood and called out "faster mommy" as she saw that with each squeeze of my hand the blood flowed into the waiting pouch, She had been so excited looking forward to seeing her grandad being “stuck with a needle” as she called it but the reality was she hid her head under her cardigan!  What a wimp!!!!

Back to our place after the hospital Izzy wanted to "make a book" so of course granddad obliged,  out came all the paper, the thick red cardboard for the cover and the big slicing machine to cut all the papers neatly.  Table laid with the craft table cloth work commenced . Very carefully Colin cut the pages to size, so neatly, all measured correctly and then glued and bound the book for her.  It looked really good.  Then she, of course, wanted grandad to draw on the cover a picture of a whale so out came the iPad and whales were typed in, plenty pictures to choose from so she decided on the one leaping out of the water.  Undaunted granddad set too to draw said whale taking a great deal of time to get it right,  the end result was really good and Izzy loved the book. It was then time for bed so book and pen went with her for a few minutes before sleep time,  What did she do, she drew over all the front cover of this lovely book where granddad had spent an endless time making sure the whale looked as good as could be!  Grandad looked a little shocked when he saw it but didn't say anything, just walked away with a wry smile after a last cuddle before sleep! 

Now morning and Izzy has just GOT to go into granddad for a cuddle.  When she stays here here takes over grandads place in bed and this is our cuddle time and story time.  Grandad gets banished to the other room to sleep!  I can hear them now discussing what they will do on Saturday when we have her for the day as her mommy is working. The following weekend we are taking her away overnight to a hotel with a swimming pool, here they will both spend hours having a good time in the water. She is telling grandad what she will pack for our weekend away. So lovely to have her here. 

Oh and I forgot to tell you about my pottery class.  It was brilliant, I enjoyed it so much and have a bowl ready for firing that I shall paint next week. I was so amazed at quite how much pleasure I got out of working with clay and cant wait for next Monday.  One day I shall post pictures, quite what you think may well be another matter!

Go well everyone, thanks for reading and I hope you found some enjoyment out of reading my blog.  xx