Wednesday, 28 October 2015

A great potter in the making, probably not!

I have been getting some really nice comments about my blogs and this is so lovely.  I was scared that people would just see them on their pages and push past them and in most cases this appears to not be  so.  Thank you so much for taking the time to read and thank you for these comments, they do make my day.

Will these be the pressies from hell?

When out with some of our friends yesterday we were fortunate to meet with one of our neighbours who is an artist and she was about to go into her studio, part of a whole complex of arts and crafts.  Linda was very welcoming and asked if we would care to look around and of course we all said YES.

What a super time we had.  We were amazed at just how much is being done there.  There was a section where people could be taught the art of creating the most beautiful glass jewellery, so pretty we could hardly believe that we too could be shown how to do this.  Onto the arts rooms where they had beginners and then progressions up to the high level my friend is now at.  Other rooms were taken over to the still life paintings, one of our friends said he would volunteer, very much tongue in cheek.  My husband said he would too were he to be able to be holding the hand of another model, a very beautiful naked woman!  We then progressed into the small one man studios where we saw so many different styles of painting, so diverse and all so beautiful in their own forms.

On visiting my friends station she was not doing art at this moment but instead pottery.  We were all stunned at the beauty, not the normal pot vases and mugs going on here but intricate hand painted bowls and busts of people, animals in all shapes and sizes and everything just sensational.  I was shocked, as indeed we all were at the beauty of these and almost fell over in surprise when she told us this was only her second term of pottery.  Feeling encouraged by this, though she is in fairness arty to begin with whilst I am more a clod hopping kind of girl I decided to sign up. Classes begin mid November.  Bet my family are dreading this as they will be sure I shall bombard them with clumsy attempts of making pretty things.  They need not worry.  I shall be happy enjoying the experience.  Should I be fortunate enough to throw anything worthwhile I will most likely keep it for myself as a testament to what man can do if they really try!

We were also told we could try a session of the glass making and for sure I am going to attend this one,  So pretty were the things and I am assured that I shall leave with something at the end of the session,,,,,,,,, watch this space.

Colin too was impressed and he is going to enrol on a course of sketching.  He felt he could never do art but a holiday whilst living in Spain with another member of his walking group proved otherwise.  His friend, also called Colin, taught him a great deal about how to see perspective and to sketch and he came home with some very credible drawings.  I feel sure sessions with real artists helping him to see through an artists eye will help him tremendously and we both look forward very much to these classes.

The beginning of my ph journey after diagnosis left me just lying on the sofa for a year, yes feeling sorry for myself I admit but in fairness waiting for the meds to do their work.  Take heart newbies as to where I am today.  Fighting ph, of course but living a life too.  I am doing, or going to do things I maybe would not have ever got around to doing had I not had ph.  The fact that my illness took me past this art gallery with good friends that day is a fact.  Were I in really good health this would not have happened as the group I was with would not have been formed.  Not only would I have missed out on such opportunities but would have missed out on the friendship of this so lovely group.  Try to look for the silver lining, there generally is one.

Two minute video to help the newbies

As I  always want to help and encourage the newly diagnosed I was so pleased and delighted to be asked by our PH Society if I would take part in the raising awareness for ph.  This for me means a two minute video, I feel there are to be five of these in total.  These videos will hopefully encourage the newbies to see that there is life after the diagnosis.  I hope I use my two minutes well and that what I tell them about my experience of life after ph helps them whilst living in the world of ph.  I feel sure it won't be forever so convinced am I that the cure is around the corner.   On the Friday of the conference weekend I am to meet with Shaun Clayton who is the Director of Membership Support and Andrew who is the cameraman.  I don't photograph well or video well so this will be a bit of a trial for me who tries desperately to avoid cameras but in this instance I am so happy to help.

Weekend away with good friends.

There is nothing nicer than being in the company of really good friends.  Ones where I can feel comfortable if I am having a bad time, ones that have no great expectations of me and understand my condition can change so suddenly.  

So it was that Colin and I and four of our really close friends went away for just one night to Sherwood Forest.  We stayed in a nice hotel with enormous rooms and decent furnishings.  On the way down we stopped off at Hardwick Hall for lunch and to look around the house.  Lunch was amazing but the house, oh those stairs!  I was expecting some but just how many I could not have comprehended.  Did I get up them all, yes I did, did I pay the price, of course I did! The house was not to my taste being not cosy at all and filled with tapestries everywhere.  I could not have ever visualised myself living here though I did love the kitchens {woman know your place}  They had a lot of apples on a table of different varieties and a lady cutting us off pieces that took our fancy.  We had never heard of any of these apples but believe me the blenheim ones were so delicious.  We were told that we could walk into the orchard and pick a few so of course we tried.  They were so high on the boughs it was impossible and when I walked under one tree and enormous one fell on my head!  It was diseased though so I could not even have the joy of eating it, it was not fit for eating.

We decided to go on to the Tram Museum on the following day at Critch.  Just before we arrived it happened, yes the nose bleed again.  It was everywhere and it was what is called a rolling nosebleed meaning the drops were huge and thick and fast.  I must confess to both of us beginning to panic as I had, on previous occasions, been admitted to hospital with such bad bleeds and had to stay in overnight.  I used up all the tissues and hankies in the car and then resorted to the newspaper.  My trousers and jumper were soaked and Colin was just about to take me into a cottage hospital when I felt it slowing.  Just as we reached the car park of the museum it stopped.  My friends came to the rescue with more tissues and wet wipes as my hands and face were covered.  Not being daunted by this though we continued into the museum and had a really lovely time.  Homeward bound we decided to head off over the Strines, a really lovely way to go home with the beautiful vistas all around us.  We all had a thoroughly good time and are so looking forward to our next jaunt.  You can't beat good friends.

Great news for our ph community

We heard that Steve Horn is home after his successful second operation to remove the clots in his lungs.  Steve and Aimee have an integral place in our Facebook community and I have had the pleasure to have met them at a conference.  I am so pleased and relieved to see he came through this operation in such a great state and he is now where he belongs, safe in the bosom of his family.  As a father of two young children there will be huge relief all around.  They are hoping to attend the conference too so that will be so lovely to meet up with them again.

Oh my word what horror is this! We  don't feed our families this!

Reading the newspaper this morning I came across a snippet and a photograph.  This showed the tail of a furry animal that was tipped out of a bag of frozen vegetables bought from Iceland.  The mom was cooking dinner and as she looked into the pan where she had poured  the veg she came across this horrible sight.  In shock she threw them across the room.  Hopefully nobody was in the flight path but it has put me off frozen veg for the time being.  Of course the mom complained to Iceland from where she had bought these veg.  She received an apology and the store asked her to return the veg and the packaging plus the foreign object.  Bet she never buys that particular brand again.

Must go now as I can smell the flapjacks cooking.  These are for my taxi driver Dean who does an amazing job when I am trialling to get me to and from the hospital stress free.  He takes a big weight off my mind on the early morning trips and then he is always around to bring me home, well worth a few flap jacks wouldn't you agree.

Have a lovely day and hoping to meet up with many of you at the conference this coming weekend.

Carole xxxx

Wednesday, 21 October 2015

New memories and hopefully encouragement for the newbies!

Information and Encouragement

We have been seeing newly diagnosed patients with ph on Facebook recently who are, and rightly so, unsure of the world of ph.  Of course they always fear the worst, maybe it is because they have been researching in the world of Dr Google.  Though we are all warned NOT to google ph I feel sure we all did.  How well we wish we hadn't as just reading the so outdated research terrifies us.  How I wish we could get rid of the old and just have the new, the encouraging data that is out there for all to see.

We need to remember that fifteen years ago very little was known about ph but that is changing fast.  Now I am sorry if I am repeating myself a little from older posts but it hurts my heart when I read of how scared these newbies are, after all we have all been walking in their shoes.  Here in the UK we have a Pulmonary Hypertension Society and we can join for free.  It has an amazing wealth of information and it also has a ph forum which we can join and on here we can connect with people to talk about anything, ph related or not, share our fears and dreams and encourage others who are asking questions.  I would advise anybody who is NOT a member to take up the offer of free membership.  It may be that we feel we know all there is to know about ph, of course we don't, but the point is we can help the ones who know little, if anything about it and I feel we owe it to them to help as much as we can in answering questions and giving support.

Telephone number for Pulmonary Hypertension Society UK is  01709 761450
This is a number to keep in your phone books.  The advice they offer is so helpful and they can get you onto the forums needed.

For most of us the beginning of the ph journey is hard, and I like to explain to others that though the journey can be really tough initially hopefully the medicines can help them get back on a more even keel. Now I know not all  ph patients respond to the medicines and that alone saddens me.  Even with the thought that new medicines are coming out all the time it does not make the ones not responding feel any better.  I am always encouraged to read of all the research now going into ph and how it has come on leaps and bounds,  in this way a medicine that does not suit one may suit the other struggling.  Above all I really do believe positive thinking helps us and trying to stay strong, not always easy I know, but there is strength in numbers and we have, as mentioned above, the ph forum and our Facebook page where we try to help one another with this disease amd this hopefully helps  us to cope.  A better understanding of the disease, the stages and what the medicines do is always good too.

When we read of a death of a ph patient we all react with horror, sorrow and many other emotions.  In every illness there will be deaths but by the very nature of our illness being so rare the death of one of our ph family  touches us all so deeply.  We are a small family and it hurts to lose a member in this way . Our hearts go out to family and friends who have lost a loved one to this disease. I have said before and I say again we owe these people so much.  Lessons are learnt about this disease from the ones who lost the battle, we owe them All so much and we should never forget that. They deserve to stay in our memories. It is the very least we can do.

MarcMary Dyer has begun posting on Facebook now.  Maybe she posted before but I just read her story of being so very very poorly but after 18 months she is actually going to night clubs again!  Now if this isn't a story of hope and encouragement what is. Never despair.  Together we are strong and can fight for a decent life. 

More tales from our memory box.

When we were on our travels through Cornwall and Devon is is fair to say that sometimes I was very sluggish going about my activities!  It touched a cord then when we went  into a shop to see if we could find something to remind ourselves of this and also the fact that I eventually managed to do everything we set out to do.  Well there it was!  A slug made out of glass with huge eyes just sat there looking at me, it had to go in the memory box and so it did.  Not sure how well the picture comes out but I think it is rather cute. 

Another memory in here is a very special memory.  It belonged to a little boy, {long since a man as now in his mid forties}. It came out of a cracker he pulled whilst surrounded with family at christmas.  It is just a tiny little piece of a train.  He was only allowed to play with it for a short time as fear of it getting into his mouth was very much to the forefront of our minds. When he left I kept the train and over the years it was kept in a special box but when the memory box came into play it just HAD to belong in the box.  If this person reads this I want him to know that he was never forgotten, always in my heart and head. 

A colourful tiny mask rests in here, great memories of one of our many trips to Venice, I love this place and we knew it would just fit perfectly in the box.  I love the colours and the hat is made of merano glass.  Venice is well known for making this beautiful glass. They also do the most amazing masks and who could ever leave Venice without one.  We bought a big one with lovely black feathers.  It now hangs on one of our walls.  It is a talking point when new people come to our home. 

Colin has posted some pictures on here.  Can you see the teeny tiny boxes for a dolls house.  I mentioned before how lovely they are with jewels and scissors and mirrors, hairbrushes and perfumes in it.  Now you can see why we love them.  The pound coin is so you can see just how small they are.  I love the train so much too. 

Just everyday stuff!

Nothing exciting happened this week.  I baked a christmas cake for my ex boss.  In truth they are like an extended family to me having worked for them for around 24 years.  It was a total different job to the one I had had previously but it worked and we built up a relationship built up on trust at the beginning to a real love for each other.  We share each others good news and bad news alike.  A nicer family you could not wish to meet and I am so proud that they are our friends and a part of our lives, I love them all so much.  Not everyone can say that about their employers so I know I was very fortunate.

I took my neighbour, aged 86, out shopping as he was tired of seeing just four walls.  All ph friends can relate to this.  He had had a tummy bug and was confined to his house for days on end.  It was awful that on leaving the supermarket his pants fell down.  Fortunately he had a long coat on and nobody but us saw what happened but it brought it home to me how frail he had got, how much weight he had lost and how I must help him to build this back up.  To this end I shall ensure he drinks complan, making it for him myself if I have to do.  I truly love this guy and so want him to be with us for a long while yet.

I have been trying online to buy a book written by Sue Dietschmann.  I am struggling with this I must say.  I feel I shall have to go to  my Waterstones store to order it.  This book I know will make you cry but I must tell you newbies that it is rare for this to happen to a ph patient.  Sue had a daughter who died at a very early age from ph.  She was the mother of an 11 week old baby and there had been no talk or symptoms of ph.  It was related to another very rare illness so not a straight forward ph.  The sadness of Sue finding her daughters lifeless body bears no thinking about but this lady has touched me so much when I read her post.  I want to get closer to her and I feel reading this book will help me to do this.

And so the end and hope you enjoyed my blog.  If you did please share it.  Raising awareness of ph is so important.  If we can help any way we can we need to.  If we can reach out and get another patient with undiagnosed ph read this and force the doctors hand to search further we must do this too.  

Have a lovely rest of the week!

Carole xx

Monday, 19 October 2015

Just chilling weekend - and why not.

At the Ayrton household we seem to have been busy busy busy these last few weeks. What with our holiday, lovely but tiring and hospital appointments for both of us there seems to have been very little time to sit back and relax.  My mobility scooter was a blessing but even then I was tiring out very quickly even when I was on it!

This last week we went to Royal Hallamshire for what I believed to be bad news, i.e. being  told that the trial was off.  I was so wrong and indeed I even had some of my trial exams, more to follow.  Sitting down with my specialist David Kiely was rather daunting as he went through the conditions needed to trial and signing the forms.  When I trialled the DCA two years ago it wasn't so daunting as it was a drug that was currently being used, though for a different condition.  My doctor went to great pains to explain that this was something totally different.  This drug was a new one and had not been used on ph patients at all.  Phase 1 had been tested on paying HEALTHY volunteers but they have no idea how it will work, or even if it will cause problems for patients with ph and that, in conjunction with the very potent drugs we are already taking,  it is fair to say I did wonder if I was doing the right thing.  There is nobody else at my hospital trialling this drug and indeed I am only one of five in the UK to trial it,  The other 118 patients are mostly from the USA.  There are 119 people in total taking up this trial.  Two spots were given over to the Hallamshire but only one, myself, have taken it on.

I was told they have no idea what may happen when on this drug in the future too.  I understood this as with DCA I have ended up with exfoliative celitus and neuropathy so yes, I do understand there may be a price to pay but what do we do.  Refuse to trial potential new drugs, that can't work or we will never move forward,  All I can do is hope for the best, put my trust in my A Team who will check me and take care of me along the way, stopping this trial if they see too much damage going on.  I am also selfishly hoping it works to help me live life in a better condition that I am currently doing.

A long, long drive.

The day following my hospital appointment we went down to Birmingham to visit the Motorhome
Show.  This was a hard day, my batteries were drained and I felt so tired it took me all my time to manoeuvre my scooter around,  I just wanted to go to bed and sleep.  Though we looked at all the motor homes in show we both agreed that as yet we have not seen one that betters the one we already have so we decided not to change it until we see one that can beat it.  As the one we have is still under warranty it is not a problem. I don't travel well on long journeys and this certainly took it out of me.

Weekend away for the guys so just chilling! 

Friday Colin set off to Budapest with his friends for a weekend,  seems a long way to go but once a year a member of the group has to pick a city and do all the organising.  It is a place Colin, and indeed most of the lads have not been to so I feel sure they will have a lovely time.  I went to my granddaughters school to see her receive the head teachers award for good maths, a very proud grandma, and then out for lunch and then went home to rest and I felt I needed it,

Saturday I did very little but a bit of shopping for my elderly neighbour who was quite poorly.  I was very lazy and bought myself a ready meal from Marks and Spencer and was in bed early, though not to sleep, sleep eluded me and if I slept two hours it was as much as I got.

Sunday, church in the morning and then I must confess to going straight to bed and here I am whilst typing the beginnings of my blog,  Colin should arrive home about 11.00 pm and I hope he does  not make too much noise putting his things away!

What a bloody mess for a Monday morning!

Woke up after quite a reasonable night.  Colin arrived home at a respectable 11.00 but he was tired and as I was too we decided to talk about his trip to Budapest in the morning when we were both rested.  I woke before him and put a wash on of his dirty clothes from the weekend.  My husband just looks at clothes and then into the wash they go.  Hence we had a huge pile of the things he had used in Budapest, some he would have only worn for around an hour or so but then into the wash they went.  I am all for being clean and fresh but this guy takes the biscuit, honestly.  I have seen him put a t shirt on and then change half an hour later and that shirt is in the wash, even though he may need to put another one on when he returns from wherever he felt the need to change. Anyway I switched the washer on and went back to bed to talk about his trip.  I turned over in bed and felt it, the dreaded nose bleed.  A little blood goes a long way and in this instance it went through to our mattress protector, which served its purpose well and indeed protected the mattress.  Now I am left with sheet soaking and two more washer loads of washing to go in.

Present for me or him indoors.

Colin had brought me back a present.  We don't do presents for such short trips so I was intrigued.  He said he bought them for me to use up his Bulgarian money at the airport.  It was a box of chocolate things of all flavours.  I don't really eat chocolate so I ask you, who gets the present!  He also bought for Izzy a rather intriguing little wooden box, very pretty that has a secret way of opening it.  Very very clever as it takes some doing to find the hidden key.  I would never have found it in a million years.

Now I am off for my routine bloods to my local hospital. On Thursday I have my dental appointment followed immediately by my flu jab.  I rang and asked if I was allowed flu jab due to trial and was told yes.

And so begins another riveting day (not) in the Ayrton household.

Enjoy your day xxxxx

Sunday, 11 October 2015

Happy days are here again

We are halfway through our holiday around Cornwall and Devon in our motor home.  We were blessed with amazing weather for the first week but as I am typing this it is a wet and miserable day outside, though I am toasty and warm in my very comfortable bed.  We are just planning where to go today as we will be leaving our family who live here in Poole to begin our slow, steady way home, stopping when and where we please.

Our first stop on this journey was in Bristol where we went onboard the amazing SS Great Britain for a look around.  This was the first ship of its kind to have a metal hull.  What an experience this was.  We were taken on a journey back through time and saw how the people travelling on this ship heading for a new life in  Australia had to cope.  It shocked me how even the wealthy lived in such tiny cabins, not much bigger than the poor ones.  The life on board though was then very different in that the food was so poor for the ones in steerage and quite good for the higher echelons of society,  it shocked me to see how many live animals were on board at the beginning of the journey, though those in steerage saw none of this meat

If babies were born on board and died they were just thrown overboard.  The rich could go on the top deck to take the air but the steerage were not allowed this privilege.  There was also a room set aside on this ship for just the ladies too!

One day the crew were shocked to wake and find the captain had committed suicide.  He had locked himself in his cabin, moved the lamp that hung near the porthole, also removed the screws to said porthole and let himself drop into the water below!  So many stories to be read aboard this ship.  If anyone is interested I am sure you can google it.  We loved this experience immensely.

Well we didn't expect that!

Whilst we were heading to Salisbury on our motorhome journey the phone rang.  I saw it was an unknown  number and expected it to be from Health Care @ Home so was surprised to hear it was my trial co-ordinator.  She had been asked by my specialist David Kiely if I could go the the hospital immediately for a right heart catheter as he wanted to bring my trial date forward by a month.  I was shocked but pleased to be told it would be earlier than the expected date but there was no way I could get back as we were too far away. Anyway the upshot is that I am now going in on Tuesday for a couple of days for all the tests needed to be done before I begin the trial medicine to take place.  When I asked today why they have brought it forward I was told the date for the trial is closing.  So I shall head off in my taxi and hope that when I return home it is with a bottle of the trial tablets. Then, of course, I hope it helps with my condition.  

I heard we lost another two patients to this terrible disease. One is called Sarah who I don't know but one is Kim  Pierce, a really lovely lady who helped others with ph often. This is why I trial.  I am fortunate to still be here five years after diagnosis but I am aware that the disease is progressive.  Some do well with the medicines to stave off clinical worsening but others do not fare so well and lose their fight for life.  Others still live a life but with oxygen and wheelchairs being part of every day life.  All any of us want is the life we should have had if we had not been stricken with this disease. If I can be part of helping to get the cure for us by trialling then it is worth all the hassle that comes with it. 

Old Sarum

Also we stopped to look at the ruins of Old Sarum, a castle built by William the Conqueror.  King John lived here and indeed Henry 1 and Henry 11 all used the castle at periods in time.  Sadly it was allowed to fall into disrepair and stones were taken and used to build other fortresses and homes over time,  still there is quite a lot to see and we could get a flavour of the size of the place and in such beautiful surroundings.  I can't be alone in touching the stones and wondering who placed this one here, where did he live, what was his home life like and so forth.  When looking at ruins I always think of the people that built the castles, not the people that lived in them, that is reserved for when I look around castles that still stand and are furnished.  

When I look around castles such as Warwick Castle I see a different picture.  I see the wealthy family living within these walls and the lives they led,  so different to the servants that cared for them.  The furnishings are often lavish and the paintings alone would have cost a pretty penny.  On looking around these places I also like to look into the kitchen and the laundry rooms.  So much we take for granted these days and I must admit I am so pleased we do have all mod cons.  Just looking at the apparatus used for the crimping and the ironing of the tiny pleats so often found on ladies blouses makes me so relieved I live in modern times.  Though I do starch my linens the job is nothing like as arduous as the servants had it then.  I do like to see a little history on holiday.  We are so fortunate that in Great Britain we have so many wonderful places preserved for us to enjoy.  We are both members of the National Trust who do such a wonderful job in restoring and taking care of these amazing places for us, as indeed do English Heritage and all the other associations we have to help us keep these places going for all to enjoy.

Oh but the SMELL! 

When we are away we try to catch buses where we can,  it's so nice to travel on all the country roads without giving a thought as to where we will park in the towns.  On visiting Salisbury we did the same and enjoyed our walk around the town.  On going back to our motor home though it was not the enjoyable experience we had when going into the town.

A man got on the bus and sat opposite us.  It was apparent immediately that he was very scruffy, maybe he was homeless, who knows but the stench emanating from him was sooo horrific.  It actually made us both gag and we had no escape, the rest of the bus was full.  I know there was nothing maybe he could do if he was homeless.  Where do they wash their clothes or have baths.  I haven't really given it much thought but it must have been dreadful for him too, or maybe he couldn't smell himself.  Now I am fortunate to live in a decent place with enough money to stay clean as indeed most of us do.  It did make me reflect on what happens to these people who are homeless. Is it through choice, through drinking or being on drugs.  I can't know the answer to why this man was as bad as he was and though he made me gag I must confess I also felt sorry for him.  Life  on the streets must be very hard, it's not something I would wish to do so I try to be tolerant of these people.  Who knows, maybe it could have been me had I be born into different circumstances.  It's a sad world.  

Exercise and ph.

All of us read all the time in the papers how absolutely essential it is for us all to exercise more,  now I know it's not so easy for us with ph, we can't just jump on a bike and ride up hill and down dales, unless we have mild ph.  For some of us it is exercise enough just to get dressed or washed each day.  However we do know the importance of exercising if we possibly can.  Even ten minutes a day is better than none.  I know I get encouraged by our own David  Stott, a ph patient who regularly runs and indeed, he smashes the six minute walk test!  We saw how on the death of Hazel Roberts last year he wrote her name on his vest whilst running to raise money and awareness for ph.  I have a ph friend in America called Katty Perazza who runs at least four miles daily, despite having suffered no less than three heart attacks before she was discovered to have ipah.  She was determined not to let ph rule her and indeed it seems she is doing a good job of being the boss in her fight for a stable life whilst living with this cruel disease.  Both of these ph friends inspired me to take up walking eighteen months ago, despite being scared of maybe making my heart worse.  I managed a year of doing really well before a deterioration in my condition forced me to curb my activities.  Maybe, just maybe the trial might bring me back to the health I need to succeed in walking again. 

Right enough of my ramblings, I will get this  latest blog out and hope I haven't bored you all.

Keep well and will speak later once my trial has begun.