Thursday, 28 June 2018


An English /American Drama

So much going on around here right now.  If one decides to go for a coffee in our park you are likely to brush up against the likes of Suranne Jones, Game of thrones star Gemma Whelan, Timothy West and Pete Davison to name just a few well known faces.  The reason is that they are filming Gentleman Jack, the real life story of Ann Lister  who lived in Shibden Hall and was a lesbian long before it was acceptable, all kept very quiet in those days.  Ann was a fascinating woman who kept diaries and wrote about her lovers in code.  She was a mountaineer and a traveller who was fortunate to have inherited great wealth from John Lister.  If you are interested in things such as this you can find much about her on google.

There is an enormous marquee on our moor that took days to prepare and many lorries declaring they are tv crew dotted all around.  I love history and as Shibden Hall is in my town and such a lovely place I am so looking forward to watching this  Drama when  it comes to our tv screens later this year.  I do hope others who read this blog look out for it and watch it too.  It is eight series long so for sure my tv planner will be switched to record each one.

Raising Awareness for PH

This is a constant with me. Whenever I can I like to use my backpack given to all here in the U.K. who attended our conference. Bright orange it certainly stands out and the words PH can be clearly seen.  I have had some people ask me what it meant and I am always happy to tell them, to show that there are hidden diseases in the world that are so devastating.  I have also ordered from America a T Shirt with, I b believe, 365 names on it of people like myself who are suffering from ph.  I think this is the second shirt that has gone on sale like this, though of course different names.  I can’t wait to wear mine and as I type this it is winging it’s merry way to me from America.  I would love to hear from those who already own one if you have had any comments when wearing your shirt.

I think one thing that unites us all with ph is that we are tough.  After the initial shock and horror of being diagnosed with a life shortening disease we show the world just how tough we are.  We cope with so much from day to day that a healthy person can have absolutely no comprehension of as we try to hold it all together, to show a different side.  I am proud to belong to groups of my ph brothers and sisters world wide.  We will fight as long as we have breath in our bodies, through all the horrific side effects of the meds just so we can live another day, week, month, year.  There is also the hope that we do not succumb to this disease, that the cure is around the corner. So talking about meds it leads me nicely on to ........

Our admin Nicole Burish

Congratulations to Nicole who has now transitioned over from her pump to oral medication!  I did this seven years ago so I know well her jubilation.  I think it took three days to transition over, she said she suffered a bad headache initially but a small price to pay.  Her aim is the one we all wanted when on the line which was to go into swimming pool or take a deep bath. She will now be able to do all of this without fear of infection travelling down the line to her heart.  Oh and Nicole, the joy of getting rid of all those gloves, the syringes, the lines, the swabs and everything else that goes with the mountain of equipment needed for the line.

It is fair to say that it is not always easy coming off the line and there is a tine needed to get used to the changeover.  Nicole herself as well as the headaches  is suffering pretty badly at the moment with a stomach ache that feels like "her belly is on fire".  She is in touch with her ph team though so they have told her it is to be expected at this stage of transition.  She is a trooper I know and will cope until they subside and her new life begins line free.  Even with the side efforts she has she feels jubilant and can barely believe that after three years she is now unencumbered with the line.  We need to remember that it is thanks to the line that her heart has now reduced in size and her pressures have dropped significantly to allow this.   

So take heart those of you still on pumps, or just beginning your journey with the pump.  It may not necessarily be for ever, nobody can say until they see how your pressures drop etc.  I know that I personally wish Nicole all the best.  Most of all I wish you enjoyment of now being able to do the things you have been excluded from with your son.  Go girl and enjoy.  


At last the day  has arrived when I go for my injections into my vertebrae, my hope is that this time it works as the last ones did not at all.  Over time my pain intensified so that it curtailed my every day life to a huge degree.  I hope that now this can change and I can get back to my own normality. Pain, as you all know, is such a terrible thing and of course we are limited in which meds we can take to try to ease  it.  I must confess to overdosing a time or two but hopefully no more, please hope with me that this time the result is a pain free existence for some time to come.

(Home now from my injections.  I told him that the last ones did nothing at all so this time he delved around quite a bit trying to get right into my vertebrae. He said often patients do well with it just running along the top but clearly it does not work for me.  Playing the waiting game now to see how it goes. )


Our house  build came to a standstill except for outside works all thanks to one person.  That person is a plasterer who had a few personal issues so we did not see him for two weeks.  In that time works that should have been carried out had to be put on hold.  Joiners could to get on with their work or electricians, nor could any of the plumbers.  We were devastated to go down day by day believing his reassurances that he would be in only to discover he did not make an appearance.  Consequently all internal works stopped. Yesterday we discovered that once again work is going on, he is doing his bit with his uncle ( who owns the plastering company } coming  to help him when it comes to the very difficult parts of the walls and electricians were buzzing around fixing lights to the outside walls. Two people were at the front door erecting our porch so once again we are thankfully on the move.

We had a mishap when the tilers finished tiling the upstairs bathroom and it was awful.  We went in and Colin began to tidy round and saw to his, and my despair, that the stone resin shower tray had a crack in it.  It was not in when it was bought so quite how it happened we have no clue.  It could be down to three services, One thing for sure though we need another one so that is now in hand.  Fortunately  we saw it early on so that the tilers could come back whilst the tiles were setting and take the ones surrounding the shower tray up.  One step forwards two back springs to mind right now.    


Izzy found this lovely small stone on the park the other day.  On the back was a few words to say to log onto Facebook and show your stone or rock on a website and then put it somewhere else to see how far your rock travels. Needless to say we are now looking for suitable pebbles or rocks for her to decorate and see how far they go.  I saw one pebble left Huddersfield and ended up in New York so some kind soul obviously travelled with it and placed it to be find across the waters.  I am quite looking forward to finding out the journey of the stones when we get around to doing them. 

We cannot wait until this house is done.  We do not have any free time to go away on holiday as days are spent with Colin running backwards and forwards between the new house and this apartment.  I think he is too meticulous and there is only one decorator he can trust and he is on holiday. He likes his painting to be done "right" .  The preparation takes quite a while before any real painting begins.  Though he tells me that is the most important part and I know that is true.  If it was left up to me it would be a more slap dash affair.  So we wait, whilst all this good weather passes us by. I envy those living at the coast as you will get the breeze we do not here and it is baking.  

So away I go again, a few bits of news but nothing exciting.  Can't wait for the day we get off and do more enjoyable things, it will happen.  To  be honest the first thing i am really looking forward to, and it sounds daft, is the very first time Izzy opens her gate and walks up the path to her second home, ours.  After all it is what this has all been about.  

Please if you can click like or comment so I know I still have you in my corner!  I am aware I do no write as often but can only write when I have at least some small thing to write about.

Warm love to all [ and my it is warm in the UK right now and fires burning strongly on Saddleworth Moor in Lancashire. the place where the evil Brady and Hindley buried their victims bodies.  } It would be wonderful if because of this the burial place of the last body came to light and he could be laid to rest in a friendlier place.  

Carole xxx

By the way the toe is doing OK ish  Strapped and painful but not as bad as it was.  Happy to feel it begin to heal.  Thank you all for your suggestions and your concerns.  


  1. Carole, do you know if this film is a movie or for television? If it is on BBC perhaps we in Us will get to see it if it ends up on Public Television.

  2. Karon it is a tv drama on BBC I believe. So yes, it could be that you see it. Would be lovely as it specifically says it is an English American Drama and the people in it are great actors. I am looking,forward,to,seeing some of the beautiful places around here on film and Shibden Hall, I just love that Manor House xx

  3. Hello Carole :) Dropping you a line again, to let you know I always read a new post from you! Fingers crossed for the pain injection to work this time. I love that idea of the stone, and seeing how far it will travel! Such fun. Be well, Carole.

    1. Ah thank you for that. Found the perfect stone for her to decorate. Pretty sure Ian free so far since injections, xx