Sunday, 11 November 2018

SAD DEATH OF FIRST DENERVATION PATIENT FROM UK

Barbara Cherry R,I.P.

Sadly we recently heard of the death at the hospital of the first patient in the U.K. who had denervation for her pah.  Barbara Cherry just wanted to change the world of PH - wanted to put her body forward to trial this.  She said she wanted to do it for the sake of all the young ones suffering PAH. After the denervation she had a new lease of life for a while. Sadly her PH was advanced and she lost the phight over two years after this procedure. PAH owes her a debt to be the first to agree to this pioneer treatment. Barbara will not be forgotten in our world.

I remember speaking to her a few months after her denervation and she said that at last she could walk up the hill to meet her friends in the coffee bar without feeling her lungs were about to explode. It was after talking to her that I made the decision I wanted to try this procedure and was able to talk to my team that same day and ask to be put forward  for it.  I have never regretted it and my life has been easier because of it.  All of this I of course owe to the team that made it possible but also to Barbara for her words of encouragement.  Had she not been so positive about the whole experience I may well have not asked to move on with it.  My heart goes out to her husband and family now as they will be grieving for their loved one.

PH and MP’s

We have been asked if we can get our MP’s to attend a PH Awareness talk at Porticullis House, London with goals in mind.  These goals are:-

Reduce time to diagnosis

Improve quality of life

Ensure equity of access to treatment

Reduce financial hardship

Raise the profile of PH in Parliament

Get MPs to ask parliamentary questions to ministers about disease management

My MP is on maternity leave so I talked to my local Conservative Councillior Mike Payne.  Boy has he come up trumps.  Though of course as a councillor he cannot speak for me in London he has asked 6 MP’s to see if they can /will attend.  Immediately Andrea Jenkins came back to say the date was entered into her diary with the hope of attending,  The other five acknowledged the e mail and reasons behind it, we are just waiting to see if any of them will be in attendance.  PH needs to have its voice heard and I hope this talk and photocall helps with this, we deserve it.

Focus Group for PH

Colin and I, along with others with ph have been asked if we can attend a focus group session on Thursday 29th November.  We are to be joined with representatives of Hallamshire Hospital asking us questions  designed to gather our thoughts on the concept of a particular model of care, which will be introduced to us at the beginning of the session, so I have no idea yet of what it will be about.  The session will be filmed and recorded to allow then to look back on the discussions the the recordings will not be made public. Should be interesting and we look forward to this.

Threw out our unwelcome visitor

This was one of our first visitors to our new house.  He/she appeared very shortly after our move but when I saw it there was no way to capture the blighter as he was about 14 feet high in the void in our bedroom. This void is over our bed so it was interesting to see him run backwards and forwards across the ceiling he seemed to like it up there as I saw him often,  fortunately I am rather fond of spiders, the bigger the better so I was not unhappy about him but Izzy was. I kept on changing the colour of the lighting in the void hoping it would make him scurry down but no joy with that one, in fact he rather seemed to like the green one as he was more prominent when that one was on! This weekend I saw him for the first time in our hall on the floor. At last I could catch him and place him safely outside - hopefully never to roam our house again. Result one happy Izzy, personally I shall miss seeing our visitor around, he did us no harm but at least we have a happier little girl.  

Eyam. We did it.

Though we did go to Eyam last year we sadly did not manage to get into the museum. I wanted to know more about this village that made the huge sacrifice to keep the Black Death from spreading to the outlying villages. The museum is well set out with an amazing video outlining the way they  managed to do this. Worldwide the Black Death killed one third of the worlds population, yes you saw it right, worldwide one third!!! Eyam kept it contained even though it meant that more could have been saved had they fled. There were many deaths and the museum talks about a few individuals along with dressed up dummies to depict them. Izzy hates dummies so we had to move quite quickly past each and every one of them. This was a pity as I could have spent hours in here. Never mind, it means another return one day which I will look forward to.

Whilst in Castleton, just outside Eyam Izzy climbed to the top of Mam Tor and was elated on her return.  One of the three peaks is next on her list to walk with her granddad ready for Snowdon sometime next year.  She also did both the caves and came back telling me how in one of them, named locally as the Devils Arse the entrance to the cave is so big that rope makers carried out their work here. She watched a demonstration and bought a piece of rope. It sounded fascinating but it was one cave I could not do as there are over one hundred steps to go down into this and that means of course one hundred to climb out.  Certainly not for me.

Not sure of this paragraph because I doubt know if it will work but if it does here goes.  This is a video of Izzy when she was very young.  We had taken her to see her very first pantomime, Dick Whittington.  I remember putting the bows in her hair and her excitement as we set off.  She soon learnt to scream and shout at the villains in the play and had a wonderful time.  Now it is set in stone that yearly she goes to see a different pantomime and really looks forward to them.  I love this video and the way she pronounces grandma and Grandad.  

Modern Technology scared me witless

As with most people nowadays we have lots of gadgets designed to make our life easier, or lazier in fact.  We have Alexa in all the rooms and yes, to a point it has been great to keep in touch with family in different rooms of the house without my using the stairs.  I can ask Izzy to come down from playing in her room with her friends, always easier to use Alexa than my lungs.  I can coax Colin down from the study, { almost finished now} for dinner etc so I was quite happy with her.  However I was scared out of my mind one evening when home alone.  I was in bed and a blast of classical music belted out from the kitchen, loud, I mean REALLY loud.  How had this happened, there was nobody else at home.  I went in to check all was well and to turn her off.  My thoughts were had somebody entered the house, were they playing a sick game with me.  Then I realised our dishwasher, that opens on its own when finished so it can air dry was open.  Had a gust of steam, or the click of the door opening caused Alexa to turn on. Off I went back to bed but had not even stepped foot into the room when off she went again! Back I went and this went on around four times until she went quiet. I must confess to being shaken by this and was very happy when shortly after Colin arrived home. I told him something weird was happening with Alexa and he laughed! It was him setting her off from the home of our friend to ease my mind with classical music.  He is lucky he is still attached to his head!!!

At last we have chosen new furniture for our lounge, really pleased as right now it is not really a cosy place as the furniture we had was not right.  It is not an easy room to furnish because of the slopes and angles of the roof so we needed to live in it and think about where we would go with it. It needs to be cosied up so in around five weeks we will have now sofas.  Then down to us to get side tables and lamps etc to complete the job.  We are almost there with the house, just the finishing touches. 

All for now, so sorry to have to spread the awful news of Barbara, always sad to lose a brother or sister to ph.  

Warm love to you all and as ever, please comment or click like, it means a lot.

Carole xxx

Tuesday, 30 October 2018

AT LAST - NORMALITY

Stem cell trial for ph in America?

In the middle of the night I opened my computer to see a post from a ph patient who was jubilant to be told she was to be admitted onto the trial for stem cell treatment.  I know nothing more about it than that small post other than she went on to say that if she is given the placebo at the end of the trial, if it proves to be of benefit, she can then be given the real deal.  I am aching to get in touch with one of my trial consultants and ask if he has heard of this, particularly as he has been for the past nine months in America.  I know we were told it was a few years off yet BUT maybe there has been a break through, maybe this is the one.  If anyone knows anything about this please tell us as I feel sure we will all be longing to know.  I promise when I get in touch with my consultant I find anything out I will post it.

Since then I have had a post from somebody who had a similar trial in Canada, four weeks of stem cells and four weeks of placebo.  Sadly it dd not work and was not the cure we are all looking for  I hope this one has something different to offer, we live in hope.  

Hospital Visit

My first one for nine months and it went really well.  Robin my specialist said he was pleased and could see no more deterioration since my last visit so I take that as a great sign.  I had been so busy these past few moths and I did wonder sometimes if I was pushing myself too hard and it might be to my detriment but that appears to not be the case.  Robin told me to continue with walking as it is in essence like taking another med for ph as it helps to work the heart muscle and open the lungs up.  I will happily comply now that we are more settled.  He also said there were a couple of trials coming up that might be interesting for me but he wants to discuss them with Alex first on his return from America.  As you know I love to trial so I am waiting impatiently to found out which two he is talking about and will I be allowed to be on either of them.

Our hospital, Royal Hallamshire wants to begin a new panel, containing specialists, doctors and nurses and a ph patient.  I was asked if I would be that patientsso of course I agreed.  Not quite sure what it entails exactly as they are just getting it all together but  think it might be where ph patients can ask questions and be answered by one of the team.  Should be interesting, we shall see.

Our Emphasis Magazine arrived and I was happy to see that a date in May has been settled for our next conference.  Though too early to book ourselves onto it yet I was really pleased to see it in print and look forward to meeting up with many of my ph family again or even to meet new ph friends.

Our move

We are in and safely ensconced at last in our new home.  Though there are sill a few things to be dealt with nothing is too terrible that we cannot enjoy living here.  The garage still needs to be sorted, as does the study but everywhere else is all done and dusted so that we can really relax here now.  I have posted a few pics but to be honest you do not get the feel of the place on a pic or really see the quirkiness of the rooms.  Some of our family came to see it yesterday and really liked it so we both felt a sense of relief that we had done something right in all of this.  I must say my daughter did a great job of choosing drapes and blinds as everything matches well and looks just perfect to our eyes. I certainly could not have wished for better.


View from the study
Sometimes on bad days it can take quite some time to answer the doorbell so we decided to invest in the Ring pro.  This is great device that enables you to see who is at your door and to talk to them through your phone.  It will be a boon when we are out also as you can see and talk to anyone on your doorstep.  however as ever with me this turned out to be a disaster.  As we are novices with this device we did not realise that on my phone every time any movement was heard outside it tinkles.  There I was sat in my hall, {church} and a tinkling came from both my iPad and iPhone.  Realising what it was I went outside too try to turn it off.  Well as you must all know by now I am not computer savvy at all so struggled to turn it off.  As I am struggling to deal with it the tinkles resounded around the hall.  I was mortified.  In total it took me around ten minutes to disable it but in that time there was a big black cat running up and down our drive and every time our ring sensed it the tinkles would resound around the hall.  Lesson learnt and hubby has taken them off for me, trust me never to return.


Kitchen with dining room ceiling in foreground


Hall
The terrace
We would really enjoy a holiday abroad right now but to be honest that just cannot happen, still too many things to deal with but never mind.  The weather has taken a change for the worst so maybe it is time to snuggle down and enjoy the warmth of our home before venturing to far.    

Looking out on terrace

We have promised to take Izzy away so that she can walk up Mam Tor over the holidays and I am hoping that when they do that I can go and visit a couple of friends I have in Castleton which would be lovely.  I have also been promised that I can go around the museum in Eyam, last time we were too late as they had closed.  This is the village I mentioned in one of my blogs where the plaque was rife but they controlled it by not leaving their village, not even for food.  All was delivered and left a safe distance away and money was left for the said provisions in a jar of vinegar to hopefully kill the source of infection.  I hope to read more from the museum about this fascinating true story of self sacrifice by these people  They could have fled, unknowingly sometimes taking the plaque with them and spreading it elsewhere but they stayed and stuck it out to the end.  So many lives lost by rats carrying the plaque and it going to them in bales of material.  I need to read much more.

Izzy and her braid

Many months ago on an holiday away with her beloved granddad Izzy was allowed a braid put in her hair.  They can stay in for quite a long time and she must have had hers in for around four months.  One night when she was saying over with us as she brushed her hair out fell the braid.  You would have thought the sky had fallen in so upset was she.  She just loved that braid.  I am rubbish with hair so had no clue how to get her another one.  On telling Anna, my sons' girl she smiled and said she  knew how to do them.  As her father was Jamaican she has been braiding her own hair since a very young age.  We shall not tell Izzy and it will be a lovely surprise when Anna turns up with the materials needed and the expertise to have another one put in.

Izzy has loved us moving here next door.  We receive a text from her each day after school asking if she can come round for a few minutes.  Of course our answer is always yes and she turns up with a huge smile on her face.  Yesterday was no different and she enjoyed paying hide and seek with her cousins all over the house.  The sound of laughter was in the air and I knew we had made the right decision to live here.

Yesterday it was cake making here with Izzy and despite the calorie take I must confess it was really delicious.  
Our apartment has now been left in the capable hands of our tenant and she was delighted on Friday when she turned up and we showed her where everything was, how things worked etc.  I know it is in good hands and hope she enjoys living in it as much as we have.  We received many cards from our old neighbours and flowers and well wishes.  I know most of them will find their way to visit us here so I did not feel too bad.  Our next door neighbour cried when we last spoke but I told her she would get to know and like Brenda and I would always be visiting as I had been friends with most of the residents for many years.

Well all for now and I am looking forward to catching up with you all again, I know I have not been online as much as usual as we were so busy but back to normal now.

Warm love to you all and please, as usual a like or a comment will be lovely.




Wednesday, 3 October 2018

TOO HARD A BLOW R.I.P. SERENA LAWRENCE

I was so saddened to read a post a couple of weeks ago from Serena Lawrence who told us she was dying,  She meant imminently  as the doctors told her that the medicines she needed were actually poisoning her body due to her taking different and more meds since she developed PVO disease.  I hoped against hope that she was wrong, that she could fight it as she has fought her illness for five years.  Sadly it was not to be and we lost her.  Serena was a huge voice for ph, an amazing writer and a beautiful young lady of just 30 when her disease took her a week ago.  Serena was the creator of The PHight or Flight Project and wrote her blog talking about ph and also the blogs of many other sufferers.  That she was spunky came across, that she was a fighter also came across in her blogs.  We have lost a truly inspirational young girl to ph and it is too cruel a blow to our communities.  Serena lived in Canada but it is true to say that in the world of ph she was known across the globe.  My heart goes out to all her family and friends who have suffered such a cruel loss.  She will be missed so much by so many.  R. I. P.  Serena and thank you for all your words of wisdom and telling it how it really is with PH. 

Are there really any ups to be had with PH?

There is no doubt it is a devastating illness.  It takes so much from us, more than the eye can see.  It leaves us so tired it is hard to put into words.  For sure i had never known such tiredness before being hit with this disease.  We lose friends as we can never be relied on to actually follow through with any plans we have been brave enough to make for the future.  Heck we cannot know how we will feel from one minute to the other so how can we be expected to know days in advance.  This disease slowly but surely suffocates us unless we are fortunate that the meds we take hold this at bay.  It is never a given, for some they help, for others they don't.  I could go on for pages about ph but I won't, you know how it is, you either see it in the face of a loved one or you are suffering from it yourself so I will answer my own question Are there any ups to be had with ph?

Of course I can only speak for myself.  For me though since being diagnosed I learnt for sure who my real friends are.  They have stood by me, helped me and been there for me when I was truly unable to do anything for myself.  I have learnt which members of my family keep stress away from me and which are happy to throw more and more stress at me too.  This knowing we are told stress is a huge killer with ph.  I have learnt to enjoy each day and be grateful for them, no matter what.  

I have learnt first hand that for sure we have the most amazing teams taking care of us.  In the midst of all the NHS cuts here in the UK I can honestly say I have not been affected.  My care is second to none as I feel sure are my fellow ph brothers and sisters.  It is nice to know that there are so many researchers out there doing there best to find us a cure.  If I had not had ph  all these are things that I would have been unaware of.  I took my health for granted as most of us did.  How could I have ever known that from such a devastating illness I would make friends with ph brothers and sisters across the globe.  

I have been fortunate to have met many of them from the UK as we meet up at our conferences and share stories and learn what is new on the horizon.  So many friends and none of them I would ever have met had I not had ph.  Ph teaches us to really care about fellow sufferers.  We come  together as a community and help to give support and advice to each other.  Though we know we will never see most of our ph family in the flesh we are united in one goal, to do our best to beat this disease. 

PH has taught me to be positive, to not let go.  It has taught me that negativity plays no part in m life.  I will not give in and will fight while I have breath in my body.  I focus on living and not dying.  Because of the way this illness takes away our stamina from time to time it has taught me to take up hobbies that I did not have time for before.  A bed day can be spent doing research, reading books, writing letters etc.  I am determined to make the most of each day whereas before I thought  my days were endless, I took them for granted.   So ph has taught me to be thankful for new days that dawn, new days to live and enjoy.   

So of course I wish I had never known ph existed yet alone had it but I always try to stay positive and look for a plus in any minus situation.  In this instance yes, there are plusses  in having ph.  All my ph family and friends are plusses and I thank each and every one of you for being there when I have reached out to you.  

Getting there.

OK at last we are really almost there with the house.  It has been cleaned within an inch of its life and all windows, both in and out and architrave has been cleaned and polished.  Our floors have been swept and washed five times in total and I have even begun to move some things into the house. For me it is much  better that each day we take down a few more things that can be nestled in their permanent place now and forgotten about until the final move in day.  My daughter has dealt with everything to do with curtains and blinds, choosing them, walking around with the guy and deciding on the fabric etc.  To be honest I cannot remember what will go in which room and I care not a jot.  I know my daughters taste and know it will be fine.  Whereas many years ago before ph I would have thrived on things such as this I now shy away from them.  They make my stress levels go through the roof and it is just a house, not worth getting more poorly for.  I am still delighted with it though and I promise pictures will be here soon.  Tonight as I looked out of our bedroom window just before we left I was enjoying seeing cows in one field high up across the bank and sheep in another.  The sound of the animals comes across on the wind and I know I will enjoy living in such an idyllic spot.  

Izzy

Typical that today just before we left for school, she is staying with us for three nights, her coat zip broke.  No time to go down to her house to collect another coat so I just had to hope the heavens did not open on her when she was in the playground.  All was well fortunately and meanwhile I went into town and bought her another new coat.  To be honest I was planning on getting her one for the winter as she had had a growth spurt and shot up.  As she was not with me I was unsure of which to buy but my choice turned out to be perfect, she loves it. so I "did good grandma" as she told me!!!

This year I had hoped to have got away without getting those Lego cards from Sainsbury's  Last year I swore it would be my last as I dealt with two books for the kids so this year I just handed over the books of cards and said they could use them however they liked.  Was a blow when I discovered one of the kids was in the middle of doing a Lego book!  Urghhhhhhh so here I am again trying to sort out swaps and begging for extra cards when I shop at Sainsbury's.  I fear I will not complete this one this year but no matter, next year NO MORE LEGO BOOKS FOR SURE!!!!!

Right I aim to get this out tonight as so many people have been asking if I am OK as I have not blogged.  The house has taken up all my spare time.  Thank you for your concern, it warms my heart it really does.  Still waiting for the reuses of my colonoscopy but no news is good news and still waiting for an appointment to see a gastroenterologist so I can have my ferritin infusion, other than that tired but doing ok.  

Now I must go and make sure Izzy gets her teeth brushed correctly, though she does the allotted two minutes I know she sometimes brushes one side more than the other!  

Warm love to each and everyone of you and please either click like or comment.  It matters, it really does. 

Carole xxx




Wednesday, 12 September 2018

PH Awareness Week 2018 - and other silly bits!

Another important date for my diary.  This awareness week that is from 22nd to 28th October is very important to those of us either living with or caring for somebody with this rare debilitating disease.  I know many use this time to raise money for PH or try to raise awareness wherever they can for ph.  I was asked if I would do a blog for PH week and so was happy to oblige.  Not quite sure when it will appear on a ph page but there it is, finished and sent off.  We all need to keep on top of our game for raising awareness.  As our condition is so rare there are not many that understand quite what we go through, what we live through daily as we generally look so well.  We are also warriors and we do not give in.  I see by lots of the posts on Facebook that we sill wish to live a life as normal as we can and I am so pleased to see we did not give up the fight.

I posted a tongue in cheek message on Facebook after I had a tussle with changing our bed.  I was pretty exhausted before I began as I had just had my colonoscopy the day before and feel pretty sure that because of the necessary meds I needed that made everything go straight through me  along with that the medication needed for my ph went straight through too.   I felt very weak as I had to go 31 hours with no food. Hardly surprising that I felt so weak.  However the bed needed changing and Colin was busy as always down at the new house so I got on to do it.  Oh how I miss the days when I just had single duvets  to deal with when the kids were small.  Now these king  sized ones take some dealing with when we get out of breath!  I posted that after doing this I wanted/need a holiday and what had you done  to deserve one.  The posts that came back were amazing and showed that despite ph most of us could manage to deal with lots of things.  True some of you, along with me after the bed had been made needed to rest but well done.  It showed to me the determination that we have that we will not play the pity card and we get on and do what we have to do when we can.  Yes we do pay the price but by then the deed has been done.  I was so proud of my ph family when I read all the posts.

For most of us no anaesthetic with ph.

This one is a big deal for those of us suffering with other illnesses apart from ph.  I had a message the other day from a friend in desperate need of an operation to remove her gallstones that are causing her such pain.  Sadly her specialists in her country will not operate as they fear the worst due to her high pressures in her lungs.  I had to tell her that it is rare, though not unheard of to have any operations over here too.  I was told no way for one that would have rid me of constant pain and am still dealing with pain clinics to try to control what a simple operation would cure.  My specialist said if I were his mom he would advise against having any operation that involves anaesthetic.  Now before I receive posts saying I am wrong I know that in America some have ops, I know that in the UK some do too but the truth is it is very rare.  The reasons have to be such that the operation given would be worth the worsening of the ph levels that might happen if one were to have the operation. I know some have had successful results with no worsening of ph and I am so pleased but the specialists take an overall look and generally decide it is a no go for us.  

So sadly yet another hard thing to endure with ph.  Maybe one day there will be ways to operate that do not involve either the general anaesthetic or the injections into the spine.  My doctor told me that was a no go area too!  One day!!!!!!!!

Those darned trees!

The lovely elderly guy who owns a bungalow in front  of my daughter has trees so high that even from their kitchen, which is a floor up one cannot see the top of the trees.  He has said he refuses to cut them and as we do to want a battle on our hands the trees remain, even though they are an eyesore as very out of shape and some damaged.  The views over Norland are incredible but sadly they can only see tiny spots through the branches.  Their garden does not get very much sun so the grass is very squishy, however we have had a breakthrough.  This gentleman who is 94 has dementia sadly and has had to go into a home after he had two strokes and also set fire to his kitchen.  Very sad but actually he loves it as he has somebody to talk to all the time and it well taken care of.  

I spoke to his daughter who actually came to see us to apologise about the state of his garden.  We said we totally understood but then showed her the trees from my daughters side of the wall.  She was shocked and promised that as soon as it could be dealt with she would ensure they were either removed, the damaged ones or cut down to an acceptable level.  Also all the overhanging branches into the garden would be taken down.  What a result as the views really are magnificent.  When I read of ongoing feuds with families due to trees and edges I know how fortunate we are to have such an understanding lady who listened and was prepared to sort out this border.  We can't wait and hope by next year and the growing season the garden can be dealt with so the children can have a lovely place to play.  

Our house

We have four decorators working hard on the house.  The colour scheme was chosen eventually by daughter and my sons' girl.  The apricot we wanted for the kitchen and dining room was so wrong. We realised it when the decorator put some onto the walls.  Both my daughter Danielle and Anna turned their noses up when we said we were having it and both of them were so right for this house.  It would have been a disaster as the colour was way too warm for an eco house that should in essence never be cold.  So we needed something different.  My daughter chose a colour that we both love so on the wall it is, well first coat and it looks great and cooling,  For the lounge we put this over to my sons girl who chose colours we would never had dreamt of.  The effect we think is lovely, even the decorators remarked how good it looks and I can't wait to show you all on completion.  Our daughter chose the bedroom colour which is very simple but calming.  We chose the colour for the hall stairs and landing and that is coconut juice.  it goes well with our dark grey doors and our silver grey carpet, when we get it laid.  The effect when it is all put together should be nice as I did see a picture in a magazine, after we had chosen all these elements of another house with similar colours and it looked amazing,.  Of course when I show pics at the end you will need to remember that some of our furniture will be changed when we get the time to get around to it.  in the meantime we will just go with what we have.  Lounge furniture will not be changed as I love Italian furniture and so we will keep that but add to it.  

Not long to go now as silly things are being dealt with and the plumber has just about finished his jobs.  We were pleased to see the back of the tilers but in the end, once they realised we would not accept sloppy work they did a good job.  The trouble is they were reluctant to do a really hood job initially and felt we should be happy with sloppy work.  when confronted one refused to talk to us at all throughout the rest of the work.   Still the end result looks great so we are pleased.  They will not be missed.  

I am hopefully heading over to see my sons' girl next week who will help me pick out accessories etc for the lounge.  We need a second sofa for the lounge so she will help me with that also.  I hope all of this works out for the best as I will be sad to leave here but I feel sure it will.

Still not told the lady that will be renting our place off us to give a months' notice to her current landlord.   Though she is desperate to get in here we are determined we will not go to a house with loads of boxes to deal with in one go so when carpets are laid we will gradually move in, bit by bit until the day arrives that we can remove all the heavy furniture and our new bed can be delivered on the same day.  I have an appointment with a company that deals with curtains, blinds and shutters in a couple of days time so she can help to chose how to deal with the widow dressings.  i get too stressed out these day doing this, though at one time I would have loved it.  

Izzy turns 8 years old

I cannot believe that on diagnosis all I waned was to see my daughters baby, my grandchild and know if it was a boy or girl.  Well she will be 8 in September and thanks to all the care I am still here, still seeing her milestones as she goes throughout her life.  I have been blessed.  She has now gone up to her third year in school and is allowed to take her own backpack and not the case supplied by the school.  This makes her feel very grown up.  Though I love to see her grow I hate it too as I do miss my baby, the one I held in my arms and cuddled.  She is still at the stage where she allows them but I know the day will arrive when she will feel too old for many and I dread that day.  I still write her journals as she progresses through life, telling her what we have done together and creating memories,  I began this when she was very small so she would know how much i loved her and see no point in stopping them now.  Into her box they go and they will go with her when she is old enough to appreciate them and the love that went into writing them.  She is still my super star and one of the reasons I fight to do all I can daily. 

One thing we love doing together is snuggling under the duvet and watching Outdaughtered.  This is an American real life programme about a young couple who have six daughters, five of them quintuplets.  We love to watch their antics and how the parents are coping with all these girls together.  Last week we watched the potty training, yes actually it made us smile.  This week we will be watching to see where Parker disappeared to, one of the children who the family have lost somewhere in their house.  All trivial things but something we enjoy together.  By he way Colin hates this show and refuses to watch it!.  As Izzy is sleeping over tomorrow that shall be our time to watch it and granddad can do whatever he needs to do in the study away from the clamour of listening to five three year olds running around coming from the tv.  We will enjoy it anyway.   

So there you have it.  No lovely days out for us at this time, no holidays etc.  The house eats up all our time and energy but we have promised once it is finished we will take a holiday.  It will have to be in the UK though as I had that overnight stay in our local hospital.  that puts insurance out of the question for holidays abroad.  We are to go a year with no unexpected overnight hospital visits.  Once again we get penalised.  Oh well,  we love the UK and there is much to do even in bad weather.  

Thank you for reading and most of all thank you so much once again for taking the time to comment or click like.  It matters, it really does.

Take care and take my love with you.

Carole xxx


Monday, 20 August 2018

I CAN'T BLAME PH

I am really exhausted at the moment.  Whilst it is easy for any of us to blame our condition the reality  though  is I am exhausted with the house though we are moving on, albeit it slowly.   Our plumber will arrive in a week to fit all bathrooms and our tilers will return to finish what they have not completed.  Decorating is now going on where we can and the builders have moved all their things into the garage as the house itself as far as they are concerned is finished.  There is still sone electrical work to be done and I need to make sure I tick off each and every thing on the list when  am taking over from Colin when dealing with the electricians.

Outside work is still going on as they are building the  base for our motor home to sit on and also the rest of the drive.  This should not take too long.   Then comes the task of cleaning!  Though they do a quick clean of course it will not be as we would like it so that will be some task,  oh the chunks of plaster on all the tiles   Our carpets are being ordered in a week so once decorated they can go down immediately.  My concern is the beautiful render, polar white which has quite a few hand marks on it already from the builders.  I am not sure how to clean this without driving the dirt inwards and making it worse.  If anyone has ideas do tell.  Once cleaned we will have a firm come out to coat it with a protector so the dirt rubs off it.  Only then will come the task of creating a garden!  We  will put that to one side for now.

Though of course I am looking froward to the move  I will miss living here. The freedom to walk away knowing all is safe, neighbours that know everyone, the friendliness of us all, the convenience of being round the corner from the hospital and a 15 minute walk into the town centre.  The park opposite and the moor just above, we have it all.  Why are we moving!! Well in a word Izzy!

Izzy

Izzy is on holiday now in Turkey with her parents and Harrison, her step brother plus really good friends Jamie and Abbi and their two children.  For all sorts of reasons it will be nice to live next door to them  Izzy can come and go and if I should progress downhill in my ph then the family will be next door to hopefully lend a hand.

We have also come in handy these last two weeks to babysit their two rabbits.  As we are at the house daily it seemed silly to ask somebody else to look after them so we took on the task.  I baulked at cleaning them out as they have a huge shed plus run so no way am I cleaning out all of that.  It was not expected of me anyway.  They will be fine as the family arrives home soon and will take over.  The rabbits have been treated to such extra delights as we cook with different veg from my daughter so they have had a nice different selection to eat. 

Izzy has been having a super time and she does keep us up to date with a few things as she took her iPad so she could keep in touch a little.  She will only be home a week and then holiday time with granddad.  I shall then take over at the house to deal with the tilers and the bathroom fitter.  I can always ring Colin if there is a problem so I think all will be well and he will get a well deserved time out.  I was going to say rest but the two of them do so much when they go away that it will not be restful.  At last Izzy can ride her bike so bike rides are the order of the day.  Another scoop for granddad who taught her both to swim ( she was doing very poorly in swimming classes until he decided to have an hour in the pool before her lessons with her - she is now a very accomplished swimmer}and now bike ride.  He envisions lots of times just the two of them riding the Sustrans bike trails.

It's a Fiasco

Have they no pride?  As you all know we are having a new house built.  There have been problems along the way as one would expect but by and large it has not gone too badly - that is until last week..
Our tilers appear to be a law unto themselves, coming  and going at all times, going outside at all  times to light a cigarette or drink a cup of coffee.  They rarely seem to be doing what they are employed to do which is tiling.  A job that should take three or four days has taken them weeks! 


I walked into our en suite and was appalled at the state of the tiling around thwindow ledge.  The ledge itself now tiled had  a slope to it, up at the right side down at the left and a slope backwards into the window frame. The tiles were chipped too and looked such a mess.   It was truly appalling.  I immediately told the tiler I would not accept it amd what did he do re the chipped tiles?  He got a felt tip pen and tried to cover up the chips!  The pen reacted with our tile which is metallic and turned red!  So here we were with an abortion of a tiled window and instead of silver and copper one had a red edging!  Of course it all had to come out and Colin told them how to get it all straight and satisfactory and he took the tiles that needed cutting correctly under the window to a specialist tile place that cut them beautifully.  In the meantime the tilers complained to our builder about us being too picky!  They were paid by the metre  and to replace the mess they had made cost them money,  Of course our complaints were validated when we showed our builder the state of the window ledge,  All is done right now but once again they have left our job for at least ten days to do another one!  We are speechless. 

PH and Ferrinject

Once again my ferritin levels are low so this involves another infusion of ferrinject.  Also my doctor is surprised that I am low on ferritin and yet not anaemic.  It seems to be part and parcel of ph.  Many of us go through this and we are not quite sure why this happens.  So once again a hospital visit, though as I am asthmatic I get the infusion that takes only twenty minutes which is a blessing.  Other ongoing tests I have coming up will be going ahead shortly and I hope to have a clean bill of health if all goes well, other than of course pah.

Our lovely break with friends

Once a year friends of ours Ralph and Katy Phipps organise a walk for any Costa Blanca Mountain Walkers who are home in the UK through the summer.  We were invited to join them and to stay overnight at their beautiful home with two other walkers Geoff and Sonia so we could all leave together the following day.

On our journey  down to our friends we decided to spend  a while in Buxton.  This  is a spa town in Derbyshire.  It is nestled in the centre of the Peak District in the UK's oldest National Park. We have been here quite a few times so we knew how beautiful the town is with its Georgian and Victorian Architecture and many theatres and festivals.   There are a wealth of shops too for those that like to browse and many pavement cafes to sit and enjoy coffee or ice creams. We found a quiet spot in a tiny park and it was here that I sat away from prying eyes and pricked a huge blister on my toe I had earned from walking the day before in the wrong shoes!  I felt it would be madness to begin a walk with a blister so it had to go.  Job done and a plaster on to protect it we ate lunch of sandwiches and fresh berries.  Very nice too.  I have many happy memories of this town as we visited it a few times with the "troops" as we all call each other, we are a group that go motor homing together.  No time to dally here though as it was off to meet up with our walking friends.

After a pleasant time spent reminiscing with Ralph and Katy and Geoff and Sonia about our beloved Spain and a lovely meal in a local pub it was time to go to bed and sleep ready for our walk the following day. We met up with everyone else that wanted to join us and it was so nice to see old faces again, in total there were 17 walkers.  I was a little bit apprehensive as these walkers were a lot fitter than me.  I was assured that there were stopping points where we could stop our walk and leave the group so reassured off we went.  The walk was undulating over beautiful countryside and the scenery was just beautiful.

Lunch was eaten in a dip on the moors and we were surrounded by many bilberry bushes.  Most people sat in pairs to eat lunch and I think reflect on the beauty surrounding us.  Ralph is a super leader and is aware at all times as to how people were coping and counting all heads!  I was fearful of letting down the group but I was told there was no such thing as letting down, if it got too much for me we simply left.  Well dear readers  {to quote of my favourite authors Jane Austen} I must confess -  I did it!!!!!  I completed the walk along with 16 other competent walkers and I did not let the side down at all.  A drink and a piece of cake was a just reward for all of us and we then came home we me feeling jubilant!!!!!  At the start of my ph journey there was no way I could walk across a room let alone complete this walk.  I know I owe all this to my doctors and nurses, researchers etc and of that  am eternally grateful.  Now a confession, I spent the following day in bed so there we have it, we can push but we pay the price.  Was it worth it, of course it was, every bit of it and I look forward to more walks with these people.

So it was back with a vengeance to the new house and all it entails.  The finish is in sight though still lots of hard work to do for Colin who bears the heavy load.  I will keep you updated.

Warm love to all for now, and thank you in advance for any comments, most welcome or likes and shares.

Carole xxx


Wednesday, 1 August 2018

HOW DID WE LIVE WITHOUT IT?

They took their time

At last, after weeks of frustration, phone calls, promises and excuses we have been re-connected to our broadband provider.  They cut us off wrongly believing we were moving.  Though they admitted the mistake was all theirs apparently it takes weeks to switch people back on again.  Our frustration grew daily as hours were spent speaking to different people.  We were allocated our own case worker who was about as helpful as a snowman in a furnace.  To be honest we had begun to believe it was never going to happen until we moved into our new home.  One morning Colin said he would try to see if the promise of broadband that day had come to fruition, {they were promising it daily over the weeks} and were shocked to realise we really had been re-connecrted at last.  So here goes for another blog.

PH Figures

The latest figures out for the U.K. show just 2567 people suffering with Pulmonary Arterial Hypertension. and around 5000 suffering with Pulmonary Hypertension.  I do not know if the figures are correct but they cannot be so far out and it does show to the world how very rare we are.  I would rather not be in this rare position as I am sure none of my ph brothers and sisters would not but there it is.  Maybe because it is so rare we can make excuses for the hospitals that have never heard of it but I feel that there does need to be more done to bring our condition out of the cold and into the warmth. We are still seeing people that are new to this group in despair after endless visits to their doctor being told they are depressed, or have asthma, or to try to be less anxious when they describe how they feel.  Most of us felt the frustration when we KNEW there was something badly wrong and we kept getting fobbed off by our doctors.  I even had an x ray and they showed me a black space in my right lung and said they were not sure what it was but felt it was not an issue!!  Blindly I trusted them and it was to be a further three years before my diagnosis by which time I was extremely poorly.

We all do all we can to raise awareness for ph and that is all well and good but we need more, we need doctors to be taught about this disease even though they may never see a patient such as us.  The fact is they may and that could just save a life.  I wonder if anyone of us can really remember what it is to breath easily, with no effort at all.  I know I cannot but it does not stop me being determined to live my life to the fullest, to the best of my ability even with badly impaired lungs.  When I do too much I accept I need to rest up, nobody will stop me trying to do the best I can.

I saw with interest on the Pulmonary Hypertension Weekly Digest that PH patients seen to have little exercise leads to lower odds of survival!!!  Well of course we all know that but sadly some are just not able to move from their chair.  I spent a year lying on my sofa.  I know myself that on the days I do not get any form of exercise in I feel really bad, a proper ph day so I do my best to do what I can.  Now seeing it in black and white it really is scary. 

Setting off on day 1 of my holiday with my trusty PH bag.

Holiday!!

Yes it was just for a few days, we could not afford to be away from the new build for too long but what a time we had.  After an overnight stay at Kendal and a lovely walk by the river into the town centre where we enjoyed a drink listening to the sound of the water meandering slowly past us we moved on to Keswick. I said in a post I walked all around Derwentwater.  I did pay the price the following day but it was a price worth paying.  As always I am looking out for things en route to go into my own memory box and I found a few.  We stopped for a drink at the beautiful Hotel  at the bottom of the lake where it was obvious a wedding was about to take place.  

Though we did see the groom and some bridesmaids alas we did not see the bride.  We did however see this stunning car belonging to a wedding guest.  I thought about George Gaskin and his love of cars when I saw this stunning one.  I loved that their disability badge was propped up in a vey prominent place  for all to see. It looked a little out of place on such a car. 

Further on around the lake ( and I should say here that the water was lower than I have ever seen it before} we stopped for much needed  refreshments, beef and beetroot sandwiches and a wedge of fruit cake with a slice of cheddar cheese. so very welcoming and deserved.  We so needed this as the heat was getting to us so we sheltered under a tree to cool off and enjoy our feast.  

Only a few metres away we came to a gate that said Rupert's Wood on it.  My mind went into overdrive.  Who is/was Rupert, a dog, a person whose ashes were scattered here.  I know there are quite a few people on here who regularly walk the lakes so if anyone knows the answer please do tell.

The Shack.

I could hardly call it anything else.  It was rather ramshackle and pretty dirty but was full of postcards from all over the world addressed to the Bear in the Woods.  In the picture you should be able to see a rather tatty bear looking out of the window surrounded by these cards.  It does say that the money donated is sent to dog and cats homes and there is a small slit for people to donate through this, plus a lot of the cards said they were sending a donation.   Due to the number of cards, the years they have been arriving right up to present day then this place is a must to see when walking around this lake.  It cannot be missed as it is right on the path. 

The last three miles I must confess were really hard.  We stopped for an orange and a sit down and a breather for me then onwards towards the Theatre on the Lake.  We decided to go over the field to our camp site rather than go into town but it was still around the same mileage and Colin had to almost drag me home. (after saying that I must confess that there was some kind of regatta taking place and this big field had lots of tents selling lovely things.  No matter how tired I was I just had to look into them.  Wes bought some home made fudge (liquorice which is a first for us) which now sits in our freezer until we feel we fancy tasting it. 

Our days were spent walking and sometimes browsing in the shops.  We were enjoying the gorgeous scenery surrounding us.  The weather was lovely and the atmosphere everywhere very buoyant as we were doing so well at the football.  We did not need to watch the match as we could hear the screams of excitement coming from the pubs when a goal was scored . I did order a name plate in one of the tiny shops that make them right in the heart of Keswick for our new house " Tranquility" which has arrived and looks really good.  Made of slate and with the name in old fashioned English it looks a picture. We are not putting this up yet until all outside works have been carried out.  

We had intended to drive round to a few other places but to be honest we were so enjoying being back here we decided to stay put.  Colin comes here every year and parks the motor home on the edge of the lake and does his walking, biking and photography. It is a lovely site and only a few minutes walk from the town centre, a perfect spot.  A lovely visit from Paula and Neil,  Paula  Joanne Burns is a ph friend made our holiday one never to be forgotten.  I love our motor home as we have the freedom to choose where we go, do we stay or move on. 

One day we took a walk around the edge of  of the lake by our motor home and we saw a little boy, no older than 4 playing in the water.  we heard a scream and looked back and he had gone down a big dip right into the water so deep it almost covered him.  Of course we ran over to help him and we saw his daddy slowly meandering down to offer him assistance!.  It could have ended badly but fortunately it did not.  Water has to be respected and at his young age an adult should have been no more than a few feet away. Children are never far away from danger.

Sadly all too soon we had to return to reality and see how far our house was progressing.  It was hard to leave as we could both have done with a way longer break but time and tide wait for no man and certainly we knew there was much to be done at the new house. 

Our new home

Yes the progress is going quite quickly now.  Our terrace is all nice and covered with lovely paving slabs all in beautiful colours so we at last can sit out on it when the glass wall is added.  Inside the house our kitchen is in totally now though we have not put into situ the electrical appliances, preferring to keep them boxed as builders do not take care of things we have found.  The electricity is on, though not totally finished yet and tiling is going on in all places that require tiles ready for the bathrooms to be fitted next week.  Our unnecessary but indulgent fireplace is being fitted this week along with our security system.  Once again we found ourselves cleaning up after all the builders as they just throw their boxes of food, cups, old papers  etc on the floor when finished with.  they really are pigs and one wonders how they go on at home.  Yes it is a building site but still we feel they could have some respect for us.  That said we do get on well with them and they are as helpful with other things as they can be.  We just wish they would contain their rubbish in one place and also sweep up after they have been cutting things instead of trailing sawdust everywhere.  It may sound petty but honest, if you saw the messes we have to clean up you would be shocked.  Even their boss is disgusted with them and is constantly telling them to tidy up the site.  His words go over their heads.

We had a fire in the garden last week clearing up lots of the rubbish and burning it.  Izzy loved this and it was very satisfying way of getting rid of it instead of doing tip runs.

The lady that will be renting our apartment from us had been pushing us somewhat as she wanted to get in.  Sadly on our return from holiday she came to see me to ask me not to rush now after all as she had had some bad news and things needed dealing with.  It transpired that her estranged husband had died and she was the one to have found him.  This was such a shock and she has to deal with all of this so a house move has taken a bit of a step back.  Of course the news was terrible and my heart went out to her. but the fact we no longer feel we need to rush has been a relief.  I saw her last Sunday and she just wanted to make me aware that she still wants our place and begged me not to let it to somebody else.  I keep reassuring her that of course the place will be hers.  

School holidays

Yes they are here again and so for most of it, except for two weeks we have Izzy.  Tomorrow she is going to help me to cook and bake, something I rarely do any more as Colin has taken on the role so it will be interesting to see how well I fare standing up for whole lengths of time whilst not moving  Strange that if I am moving I do ok as you can note by the fact I walked around the lake.  Standing in one place and it must be that my oxygen levels drop and I do not do so well.  We shall see how I go on.  Izzy does pretty well at peeling potatoes, with a peeler not a knife and she does all other veg well too so with my own little helper it should go ok.

Just before the end of term we were invited to school to hear recitals from quite a few of the children that were learning how to play musical instruments.,  She has skipped one book as she plays the piano pretty well, fortunately she seems to have found her forte.  Our hearts swelled with pride as we watched her perform what appeared to us to be a rather complex piece where she had to cross her hands to play part of it.  Well impressed!   So we have this gorgeous girl every day until they go away. on holiday.  To that end I have been buying new games.  Though her favourite is still snakes and ladders I am so tired of it.  One of the new ones is called Pigs in Pants, a game involving pinching pants or knickers off pigs, a funny game and we now love it.

A few hours on and biscuits baked, chocolate buns cooked and frosted, a big pan of homemade chicken and veg soup (which Izzy declares is the best in the world }and meat and potato pies made ready for when needed.  The day has gone well and she did help me a fair bit.  A few times I felt really rough so sat down until the moment passed.   A successful day I believe. 

Day following and she went with me for my blood tests, she is not impressed with this procedure but the fact she was given a lolly after it made her like it a little more.  Quite why she got the lolly and not me who had the blood drawn for my liver function tests  is beyond my comprehension but never mind, I forgive her.  

Stacie Pridden

Please send out good thoughts and wishes for Stacie who is in hospital after her lung collapsed, the same lung she has constant issues with.  She hates hospital stays but Mark as always is by her side and she does manage a smile for the camera.  Stacie has endured so much since her transplant and now in rejection, with no hope of another transplant I hate it when she has to spend her time on yet another ward, with yet another issue.  As always though she shines through and her fighting spirit never leaves her.  Go well Stacie and be home soon.

Right time to talk to Colin about how his day went down at the house.  Our fireplace has not been fitted after all as they had to finish a job they did not compete on Friday but our security system is now up and running so one thing ticked off the list.

Thank you for sticking with me, I felt so bad when I could not keep in touch. Please remember to click like, or comment if you will.  It really makes such a difference.  

Wam love to all

Carole xxx





Thursday, 28 June 2018

LIGHTS CAMERA ACTION

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.  

Injections.

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. )

Gutted

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.    

Rocks

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.