Friday, 25 September 2015

"Our Stacie" and blogging and history in the news once more.

Stacie at our conference.

It's not long now until our long awaited conference. We all get so much out of these and it is a time  to actually meet in person all the people we feel we have come to know well through the ph websites.  This year my specialist Professor David Kiely is speaking about ph so I am looking forward to that but one of the highlights will be to see our very own Stacie Pridden talking with Ian Armstrong about blogging.  As I am a newbie to blogging I have asked, and received help from Stacie, Kath Graham and Tess Dunn so owe them so much that I can at last get mine out there.

Through blogging we learnt of Stacies life whilst waiting for her transplant. Her blogs were entertaining, funny, sometimes sad and gave us an insight into her every day life. We saw too through her eyes the anger that people just didn't  sign up to the organ register  This does infuriate us as some of the self same people that refuse to register, or can't be bothered, would be happy to take an organ should the need arise. So frustrating!!!!!   Most ph patients will have recognised something of themselves  when reading these blogs and it was good to see them being read by so many so as to bring awareness about ph and its effects and physical limitations this disease brings to us.  I am looking forward very much to this spot in the conference given over to Stacie whilst Ian is talking to Stacie about her blogging.

Isn't nature wonderful

Looking out from my window slightly to the left we have a park.  It is called Manor Heath.  Looking straight ahead we have the moor, called Skircoat Moor and to the right a large triangle of grass.  This triangle holds many memories for me,

On this triangle stood a huge chestnut tree, a truly beautiful tree that gave off its fruits of conkers in plentiful abundance.  It's a tree I used to sit under whilst waiting for the bus bringing my son back from school. It's a tree where we used to pick conkers for the children and string them and them put in vinegar to harden so they could try to beat their friends at conker fights. A tree that had stood and grown in this spot for many many years.  It was a truly beautiful tree.

We were shocked to see on this  tree one day a huge green cross.  On enquiring why it had this cross on we were informed that the tree was diseased and needed to be removed.  The branches were huge and could be dangerous if one fell and there was a great likelihood of that happening with the disease.

My friend was horrified and asked the council if they would consider chopping down all the dangerous parts, injecting the tree with some kind of disease killer once the trunk was open  and then sculpting something with the huge trunk.  It was agreed and now the work has begun.  The tree has been chopped down to 9 feet  and work has started on sculpting two squirrels out of the trunk.  Squirrels were chosen as we have so many due to  trees and bushes all around us, hence many squirrels!  We are waiting with bated breath to see the end result.  Everyone is so relieved that something as beautiful as the tree was is not to be completely removed and destroyed. We need to preserve nature and in this instance a good thing will have come out of the bad.  Hurray for my friend and the council that saw fit to agree to such a suggestion.

When I look out of my windows I see nature in all its glory, from the park, the moor and now there will be the two squirrels that will be sculpted from the tree.  All is well again with the world

Old news made new.  

I see that the Russinas are once more taking DNA samples of the bodies found of Czar Nicholas 11 and his children to establish if two more bodies buried 70 yards away are those of two of his five children.  I am finding this all rather odd.  I have always followed the history of the last Czar, not least because we could have saved all the family if our royal family had heeded their pleas to allow them to come to England when they knew the fall of their empire was imminent. Now  whether our Royal family did the right or wrong thing in not allowing them to come over for fear of reprisals is another matter What puzzles me is how the story of where the bodies were first discovered has now changed!

Years ago I well remember waking to the news on a Sunday morning that the bodies of the Imperial family had been found burnt and the bones thrown down a disused mine shaft.  Now they are saying the bodies were found buried,  I wish they would make their minds up as to the correct story.  We are going to Russia in May next year and I hope the true facts will be out there then.  It is a story that has always fascinated me.  I believe it was said that the girls had many jewels sewn into their gowns when they fled the palace.  Some sources said that the bullets fired did not kill them all as the jewellery saved two of them from dying due to the bullets not penetrating their bodies as the jewellery acted as body armour.  There were rumours that Anastasia had survived,  and indeed there are books written about this girl who claimed to be Anastasia, this was never proven   This was proved  to not be true by by DNA samples taken from the cousin of the Czar, our very own  King George V.  Quite  how this semi literate girl managed to pull off such a stunt as to even having her supposed Royal aunt agree that yes,  she was Anastasia one will never know.  She certainly knew lots of private things that had gone on inside the palace.  Anyway she did very well out of it as she gained many believers who took care of her and paid for her upkeep for the rest of her life.

Then there are the doubters of the said DNA tests, stating that it was in the interest of our royal family to NOT have this girl declared to be part of royalty.  We will never know the complete truth.  

This family certainly had their fair share of notoriety.  Some of this was due to their dealings with Rasputin, deemed to be a holy man who  had , supposedly, healing powers.  As their son was a haemophiliac it was understandable that they trusted in him. The problem was that he was supposed to be unduly influencing the Czar, and in particular Alexandra in the matters of politics.  Rumours were rife about an affair between the couple but this has never been proven.  

One thing that did come to pass was a prophecy made by Rasputin to Nicholas to say that were he, Rasputin,  to be killed by government officials then the entire family would be killed too, by the Russian people, their very own!  This prophecy did come to pass as the Czar, his wife and all their children were killed by assassins during the Russian Revolution.

If I have bored you then so sorry but this period in the Russian history has held a fascination since I was about 13 at school. We had an amazing history teacher who made history come alive.  She made us really "see" and live history.  I will forever be grateful to her.  

Our holiday begins tomorrow 

Right, motor home packed up, food in fridge and freezer, petrol tank full to bursting.  Just waiting until morning to set off.  We are going out for an early dinner tonight as house fridge is also cleaned out.

I will end on this note.  Mercy, my trial coordinator from the Royal Hallamshire rang me today.  I am booked in to the hospital on the 11th November for an overnight stay to begin the tests and then, hopefully,  will leave the following day with my first months supply of pills for the PH trial. This trial can be found on google ASK1   GS-US-357-1394 if you should wish to look it up.  My hope is that it is a successful trial without too many side effects!  I still have neuropathy from the last one!

Have a good day and keep as well as you can everyone xxxx

Tuesday, 22 September 2015

Common sense prevailed

In the news recently was a huge hullabaloo about  a young mother called Cherish, living in America who was about to be prosecuted for leaving her four month old baby in a shopping trolley and "forgetting him"  leaving him for 20 minutes in total.

This mom has four young children, all well taken care of, two I believe are at school or nursery and one young one plus baby.  Now it transpires that this mom called at her supermarket to collect a bunch of flowers for her nephew or niece, can't remember which.  This she does every time a child of the family reaches 16. Taking the child out of the car still in his baby seat she unstraps  the other two children and into the store they go, she paid for the bouquet and straps the children back into the car and drove off, leaving her four month old baby in the shopping cart.  Shooting off home it wasnt till she arrived, ten minutes later, when one of her children in the car asked where the baby was!  In horror the mom drove back to the store and was very fortunate to find that the baby had been taken into a store and was being well taken care of.  By all accounts she was distraught, who wouldn't be and so relieved to see her baby was safe and sound. Total time taken, 20 minutes.

The outcome of this was huge.  Media television jumping all over the story, the usual calls of unfit mother and a very real chance of all four children being taken into care and a custodial sentence.  We covered the story here in the UK too and the mixed reaction from the general public was huge.

I read some of the hate mail.  Most, though not all that wanted this mom hung drawn and quartered were from men.  Some from women too who felt the children would be better taken into care, after all what kind of mother is this that can  "forget" her child.  There were though over 20.000  posts from well wishes, mostly moms who had done similar or admitted that they too were not the perfect mommy. Well my response to this was that she was a normal mom, a busy, loving mom who had only given birth 16 weeks previously to this very much loved and well taken care of child. A mother who was running from school to nursery and shopping and back again, a mom who had a momentarily lack  of forgetfulness.  Does this make her a truly terrible mom, I think not.  Why do I think this, well I too forgot my son and I do not consider  myself bad mom.

My son was ten days old, I had been home from hospital one day.  I dressed him in his beautiful new white romper and placed him carefully in his big silver cross pram and pushed him proudly to the post office to buy one or two things. I left him outside the post office (we could in those days) and completed my purchases. I left the shop and walked past this huge pram containing this very precious bundle and actually walked home, it was only on entering the house and seeing baby paraphernalia around the house that I remembered him and with horror on my face I ran down the road to the post office so fast I would have won any race, I was fortunate that he was still asleep in his pram safe and sound and I, with much relief took my son home. He suffered no  effects of this, though I can't say the same for my heart!

Does this make me a bad mother, I don't believe so.  There are babies every day who are left on beds whilst the mother turns around to get a clean nappy etc and the baby rolls off. children who go missing in a supermarket for a short while, who fall because their moms and dads don't have hold of their hands over uneven paths.  So many things we all could have done, hopefully we did not. This mom did not deliberately leave her baby, she had a lapse of concentration.  Yes it could have ended badly but fortunately for her it didn't. The baby is safe and well and with his family, no worse for this experience.  Can ANY parent claim to be the perfect one,  I think not.  We all do our best for our children but life being what it is we can say we never given our child a lolly for some peace and quiet, or stick a video on so we can finish the ironing in peace or some such thing, or that our concentration is ALWAYS on our children.

Fortunately for this mom common sense prevailed.  The social service departmental people that checked her and her husband out found them to be a loving family with a father that worked hard for his family and a mommy that took good care of the children.  She had a momentary lapse, should she be vilified for this, I think not.  I wonder what you all think.  Plus we need to take imto account baby brain,  this baby was only 16 weeks old.  It takes twelve months for us moms to get our heads back in gear with all the hormones surging around our bodies after birth.  I just hope that this mom can now put this behind her, for sure she won't forget again, I know I didn't!

Sad to read in the news too of the death of Jackie Collins aged 77, the sister of Joan Collins.  I can't say I have read any of her books, not my type, but she was loved by many who did read them and it is  always sad to read of a death after fighting an illness for six years.  We with ph know the battle we live with so know how hard daily life can be when our bodies are letting us down.  My condolence go out to her family at this sad time.

We are preparing for a holiday in our motor home down south to visit with friends and hopefully family too a good break is what we need and then return to get on with all the procedures needed for me to begin the trial.  I have said before I am paranoid about leaving cupboards and drawers clean and neat and windows sparkling, freezer defrosted and tidied and all put back in. This makes going on holiday stressful but then hope to have an enjoyable holiday knowing things are left lovely and
tidy for our return.

Have a good day everyone.  we are hoping that the three week heat wave supposed to hit us at the end of the week transpires.   Would put the icing on the cake for our holiday.  Speak later  xx

Wednesday, 16 September 2015

Symbol of the Zebra and Trials and Tribulations

Now most people who read this blog will know what the sign of the zebra means.  Doctors are told if they hear hoof beats think horses. As we know to our cost sometimes hoof  beats can mean something else.  PH specialists are trying to reach doctors with the message that sometimes hoof beats can mean zebra.  Ph is often mistaken for asthma, COPD and other diseases and often, no matter how many times we try to say, no it's something else, I feel it, the doctors go along with the horse theory. This leads to a worsening of our disease and sometimes this is fatal. If you are constantly having trouble breathing, tiredness shortness of breath, fainting, feeling sick etc and despite the doctors telling you it's just asthma etc ask them to look at ph.  This just MAY save a life or severe worsening of the disease.  Most of us with ph have struggled for years to get a correct diagnosis.  As ph is a rare condition many doctors will never have heard of it so bear this in mind if you or a loved one have symptoms that do not improve despite medical intervention and ask them to think zebra.  In other words think outside of the box medically speaking.

I have received the paperwork for a trial I am hopefully going to be part of if all goes well with preliminary tests.  This study is going on with 120 patients in 70 medical centres worldwide and can last up to two and a half years. At the start I will have all the usual tests, MRI, ECHO, ECG. RHC, lung function test, 6 minute walk test and various blood tests plus weight and height and liver function tests.

The end result of this study will be to see if the trial medication we have been taking has stopped or slowed down the progression of ph.  Now this is not a cure, that will come at a later date but if we can halt the progression of the disease it means we can stay stable long enough for the cure to be found.

There is no specific name for this study/trial, it is just letters and numbers.  It is a double blind trial with a placebo and three different strengths of the drug.  For the first six months this is how it will be but after six months those on placebo will come of this and also take the drug.  There is the usual waiver to be signed at it also says that side effects maybe death!!!  It has been tested on healthy humans and on mice but they do not know how the drug will react to our ph medicines we already take. If it is deemed advisable to halt the trial along the way then they will, of course do so.  It maybe that they decide it is a great drug for us and they will begin to take steps to market it.  Just watch this space ............. I shall,  through my blogs,  inform you of anything noteworthy re this trial/study.   I do believe it is an American study.  My last trial was a Canadian one trialling DCA.  If you choose to look it up online then google trials for ph  ASK 1 and then look for GS US 357 1394.

Tribulations......  Well in the grand scheme of things it does not sound much but we live opposite a park called Manor Heath, deeded to the people of  Halifax by the John Crossley family, wealthy factory owners of Dean Clough Mill, reputed to be the largest factory for making carpets in the world.  It is for the people to enjoy and indeed it is a pretty place to go to for picnics, to see what I call the secret garden, an amazing space growing numerous flowers and fruits or indeed to go to see the butterfly park where there are Terrapins and any number of birds and butterflies plus amazing sub tropical plants.  The children play here and there is a children's park with the usual slides and swings etc.  Our granddaughter Izzy loves this park and calls it "her park" and she and grandad are very regular visitors to this place.  Surrounding this Manor Heath is a wall centuries old and well maintained

 On leaving here we are then surrounded by a large  moor  73 acres, again given to the people by the Crossley family.

The Crossley family also built an orphanage, a beautiful building and they took in children and educated them well and placed them into apprentishops on reaching 14.  The children were dressed well and taken good care of.  The home later became a school for the blind and is now a grammar school.  Surrounding this school is the moor and it is well used by the children of Halifax for playing football and other games. Again picnics are taken here and people run around it for exercise, it's a pretty place.  Three times a year it is used to hold annual shows that benefit the people of Halifax as the proceeds are for charity.

There is a dark side to this moor too as Josephine Whittaker was killed here by the infamous Yorkshire Ripper, only yards away from her home.  She was a nineteen year old pretty girl who worked at The Halifax Building Society, one of the very few people he killed who was NOT a prostitute.  He later said he regretted killing her, big of him (NOT).

A few weeks ago we were horrified to see travellers taking over this space.  Not sure of their nationality but that matters not. They all had big cars and very big caravans.  They proceeded to drive over the beautiful wooden edging that has stood the test of time of many years, breaking and splintering it into thousands of pieces.  They then parked and immediately hung washing over the beautiful walls of Manor  Heath and slung out their rubbish, which they must have brought with them from their last stop, quite why is unknown as they left all their rubbish here with us.   What a mess it was.  We will never be sure where they emptied their toilets.  The result was no ball games could be played on this part of the moor and matches were cancelled.  Such a shame as games and exercise is a big part of the school curriculum . Driving past the site looked an eye sore with washing draped everywhere and rubbish slung around and churned up grass.   The police came and told them to leave but to no avail,  and there they lived for a month. They paid  no rates and spoiled  the moor and made  it unfit for the use it was intended for.

The thing is we DO provide a park for them just three miles away in Ripponden but this site is never used by them.  I don't know why as Ripponden is a nice place.  It is not as though they can't  buy a small house as the cost of their very expensive cars and caravans would pay for a house, bigger than the vans they live in. This is obviously the lifestyle they have chosen so there must be a way made for them to pay for the destruction they leave behind in their wake.  It should not be for the people of whichever town they choose to live in to pay for the removal of waste and clean up operation, plus the tidying up and making sterile again the sites used when they move on.

Now before I get an outcry of "everyone has a choice of lifestyle" I totally agree, of course we do.  We must, however be prepared to pay for it and to pay for the removal of sewage and waste.  We all do this by paying rates and taxes.  Nobody gave me land to use for free.  We have a motor home and regularly go away in it but we pay for the sites we use.  Along with this payment money goes out  to pay for the removal of waste and sewage.  We also pay for the land we are using.  Fair play all round I believe.

The mess left behind when these travellers left was horrific, requiring not one but two lorries from our council to remove the mess and then try to repair the damage done to the moor and make it safe for our children to use once more  There is a tip not far from where they were staying, their cars were huge so would easily have accommodated their rubbish so it would not have been hard.  The council did go around regularly to remove waste so why such a lot was left amazes me.

It was with great relief that on the day the court order to remove them they just up and left.  Imagine our horror then when a couple of days ago looking out of our window we saw the SAME  vans  returning!  This time though quick phone calls from local residents had them removed the following day, once again leaving behind the destruction of the beautiful wooden edgings, plus all their waste.  I don't expect this is the end, quite what the answer is I do not know.

I am having a lazy day after having not one but two hospital visits to two different hospitals over two days.  The first one being to Leeds General Infirmary to meet with a great doctor about my neck and the severe spondalitus I have.  No real outcome as I can't have surgery, he said it could kill me but he has referred me for physio so maybe that will help the pain.

Yesterday I went to my specialist hospital in Sheffield.  Again my A Team were warm and welcoming, (it may be to do with the fact I always bake cakes for them)!  Anyway after my MRI, lung function and ECG plus six minute walk test they were happy with me and my heart does not appear to be much worse than six months ago when I had my last MRI, relief all around.  Next  step is all the tests required for trial so screening visit will be arranged for after our holiday.

Must get some work done now as we then collect our Izzy from school.  We must give her huge hugs as she did the best ever in her swimming lesson yesterday.  So relieved as she was a reluctant little swimmer initially but now loves the water and is doing very very well.  I have overripe bananas so I will bake a banana cake and the glut of carrots is calling out to become a carrot and coriander soup. These will be my tasks for the day.

Have a lovely day, the weather is super here today and I hope it is where you are too.  xx

Tuesday, 8 September 2015

Our cabinet of memories and a hope for the future

Everyone  has memories, of holidays, special days, weddings etc.  we are no different but where to store them so they are always at the forefront of our mind is something else.  Years ago our lovely friend Michael bought my husband Colin a printers block.  It used to store all letters and numbers for a newspaper.  After having purchased this for us he then had a glass door made for it  and so began  our memory box.

Over the years we have added so many memories.  It contains our leather pouches for our wedding rings, all our passes for the cruise ships we have been on, a champagne cork with a 20p stuck in the top from a successful business transaction.

 Another cork brings back such sweetly sad memories of our time living in Javea.  Four friends were with us on holiday.  After eating a lovely meal by our pool the fiery  heat had gone from  the day, the evening was a beautiful one  and a friend looked and saw the sun just beginning to come down behind the mountain.  Very quickly we grabbed a bottle of cava and some plastic cups and quickly made our way to the top of our woods where we sat and watched the sun go down completely.  Six people in tune with nature and a memory never to be forgotten.  Very poignant memories as one of these friends sadly lost her battle for life against cancer.  The cork now sits in our memory box.

 Teeny tiny cabinets are stored in here for a dolls house with tiny scissors, mirrors, jewels, perfume bottles etc.

When I look at it I am reminded of living in America and our lovely friend Pete who took us to my first ever purpose built restaurant for fondue.  I still have the tiny bottles supplied to us with balsamic vinegar and one with a very potent chilli sauce.  I will never forget the amazing times we had in America.

There are the tiniest mugs ever with our names on from our honeymoon in the Grand Caymen spent with our  lovely friends Pat and Gord.  They bring back memories of days in the warm seas and the coral so close, the barracudas that appeared on the wrong side of the coral and seeing Colin and Gord making a hasty retreat from the seas,  of huge bonfires on the private beach where we toasted marshmallows at the end of the day.

The crowns I bought for my children are in this box and a red rose, fashioned from some type of paper where we celebrated our wedding anniversary when we lived in Javea, Spain.   My granddaughter is about to put in some rubbers fashioned to look like burger and chips plus coke bought from our lovey holiday in Center Parks,

Another rose fashioned from paper was to celebrate my daughters birthday a few years ago when we took her to a really lovely restaurant.  This place was set nestled between the beautiful mountains and had a livery at the bottom of the drive.  My daughter loves horses so this was an amazing place to take her for this celebration.  Another memory in the box is a walnut.  This dropped on my daughters head when again, living in Spain we were eating in another restaurant under the walnut trees and this nut  obligingly dropped on her head.  I will never forget the laughter we had when this occurred.

There are two almonds still in their shells.  memories of walking through the woods where we lived with the smell of the fennel  in our nostrils as we walked through the almond orchard and then on through the meadow filled with the aniseed scent of this plant.  For certain nobody ever needed to buy fennel when there was so much of it growing wild all around us. Then on we went through the grape vines, heavy with their fruit till we reached our goal, the golf course club where they did amazing food.  Here we sat outside with all these delicious  smells assailing our noses as we ate and watched the huge carp in the water at our feet.

Izzy loves to stand on the ladders, small ones, and take out the memories one at a time and ask about the articles,  they keep our memories alive and we shall continue to add to this box, hopefully for many years to come.  She loves the tiny bottle containing  whisky from our trip to Gretna Green, all these memories and many many more are contained in this box.  Another tiny mug contains a tube of Colgate toothpaste, the tiniest toothbrush that comes with it nestles up to this tube.  These are memories of a dear friend from the time before I married Colin.

Whilst I have these memories I have many more to add.  I may have ph but I won't let it beat me.  Yes I have bad days, most of us with ph do.  I get very tired much more quickly than a person without this illness and I am limited to what I can achieve in a day.  Lethargy is part of my everyday life too, it goes hand in hand with ph but ........... I am also alive and determined to beat this disease with the help of the researchers and my A Team at Sheffield who take care of me so well.

This ph is a war.  All of us living with ph are in a war zone.  As in a war there will be casualties and hard times along the way,  we are fighting a battle that seems so senseless to us.  Why did we get this disease, why is our body letting  us down like this. So many whys and no answers YET but the answers we need, and the cure we need is every day being looked for in many many laboratories nationwide,  the speed that new medicines are coming out for us is huge and in reality they have not been researching for ph for so many number of years,  they have come  so far so fast in researching this disease and we now have more meds to help us to push it back.

When I was first diagnosed and given the prognosis of six weeks to live without medicines there were few options available then and as I was so near to dying I was immediately put on a Hickman line with a pump tied around my waste and the pump sent medicines every two minutes via a tube that went in through my chest  delivered this med close to my heart.  After a year my heart was better able to cope with the high pressures in my lungs so I went onto oral medication. I am on a very  high dose of sildenifil , or Viagra to the ones reading that don't know the different term.  I am on 300mgs a day, a huge dose and many of my ph family will be on the same, plus 10 mgs of ambrisenten.  We all need water tablets and warfarin plus other meds  our body needs with this disease but these are the weapons we need to go into this battle zone with, these are the arsenal of medicines we take to keep us alive whilst waiting for the cry, " the war is over, we have won the battle" .

This gives me huge HOPE of a cure.  I am a casualty of war now BUT as the Professor at Cambridge University said when he was on television with the breaking news of a cure for ph we new have a real HOPE.

We need to stay strong, to believe  that we will come out on top,  this war will  not beat  me.  We need to stand together, help each other and to firmly believe, as I really do, that I will beat this disease, I will win the battle.

Meanwhile I shall continue to add memories to our very special cabinet, memories we share with so many people in our lives, family and friends, very special memories.

Hope you all have a lovely day, now i must go and get my grandaughter Izzy to school.  This sentence means so much to me, who would have thought five years ago when diagnosed I                                         would be saying this!!!!!