Wednesday, 30 March 2016

Laura Parker - Wish I didn't have to post this

Laura Parker

Oh how I wish we had come to the day we did not ever have to write such things as this in our blogs or on our Facebook pages.  Sadly we are not at that point so it was that yesterday I posted on my Facebook page the very sad news that we had lost Laura to PH.

This news leaves us here in the UK reeling as it seems only yesterday we also lost another very popular, very well known ph fighter, Karen Farminer.  To any new ones reading this blog you will never get to "virtually" meet either of these two amazing people but I can tell you now how very badly they are missed.

Laura was so lovely, so bright, so full of fun.  I only met her through the dreaded ph but still it was always a pleasure to meet up with her when I went for my hospital visits.  She spent a lot of time as a resident of M2 Royal Hallamshire which was my specialist hospital.  She talked about her husband Stephen and her son Jack.  Her pain on having ph was obvious and her worries were for her husband Stephen and her beloved son Jack, aged 7.  She told me that Stephen was a great dad so she knew when she had to leave this earth he would be fine with his dad but as a mom she wanted to be with him in every step of his young life.  She wrote him birthday cards, christmas cards, cards for when/ if he got married, had a baby etc.  Such was her need for him to never forget her, that she would always be a part of his life.  

I do not believe Jack could ever forget his mom.  He is surrounded by people who loved Laura deeply,  people who will alway be telling him about his mom, showing pictures of the happy times they all shared with Laura.  His dad, whom I had the pleasure of meeting will be reminding him of his mom as he grows out of childhood and into adulthood.  I also know that Stephen is very capable of taking care of Jack.  He has needed to do this for many many months as the toll the ph took on Laura's health grew and grew.  It was Stephen who did the school runs with Jack, who made sure he did his homework (although I know Laura as a school teacher worried about if he was made to do enough!)!,  it was Stephen who carried on the daily life of living whilst he carried the unbearable pain of knowing he would shortly be losing his lovely wife. How my heart goes out to all of her family right now, to her parents who were with her when the decision was made for her to go home to die, to Stephen for the ache he will now be feeling, the pain of losing his life partner and to Jack who now has to live a life without a much loved mom.  

Death when living with ph is with us at all times, we know ph is progressive, we know without the medications most of us would not even be here right now.  What we also know is that on these sites are people who have lived many many years with ph and are still phighting today.  We also know we need to remain strong, even when reeling under the blow of losing Laura, we need to keep believing that daily the cure comes ever near.  We must never lose sight of that.  Sadly the cure was not to be in Laura's lifetime, her body just had too many complications to fight it all but believe me it will come, just keep believing.  

Laura you are not forgotten, you live on in the memories of the many people that loved you, just look at the pictures posted on your timeline, you see all the pain at your passing you see all the pictures of the happy life you had as a very popular girl, a real party animal until the ph took over.  You live on in so many peoples memories. 

and away they go ..........

Colin is taking Izzy away for a few days in the motor home, how excited is she.  I am not allowed to go she tells me, this is just her and grandads  time together!    The van is here, food is ready to be loaded and plenty of toys "just in case" the weather is not being kind to them.  Plenty wet weather gear is going to be loaded along with her bike and scooter.  I shall of course keep in touch daily with them but I know they will have a great time together.  They are only going to be just over an hour away from home in case Colin is needed here with me.  Fortunately I have family and friends close by I can call on should the need arise but I am hoping that need does not occur and that they have a truly super time together.  They are heading off to York.

York is an amazing city with so much history all around and so much more to be discovered over time as  underground  there are still excavations going on. As we try to teach Izzy history where and when we can we know she loves this place, walking down the shambles, learning about why the houses were so close to each other, hearing about the lack of sewers etc.  We have ruled out her going into the York Minster as I believe she is too small to take in the magnificence of the place, anyway as I have said before the cost of this place being built in the times when money was so tight for the poor still gets to me. 

The site of the park they are staying on is truly superb.  People book for many months ahead to ensure themselves of a place here.  It is right on the side of the river and nestling side by side with a magnificent park to ride her bike on they could not be going to a better place.   

Up and down 

Since being infused with the ferinject a week ago I have not been too well.  I truly do not believe it to be the infusion as I have been infused before with this, though not on a study, and I did fine. The first couple of days I was fine then I spent three days in bed unable to even get a bath.  Now  I find my mornings are ok, I get out and about and do what is needed to be done.  By midday I begin to go off as I call it.  My legs begin to buckle and I feel myself going faint so  tend to spend my time sitting in a chair with my feet up.  I am so afraid of fainting as this could mean an end to my cruise, the insurance company would surely take a dim view of my leaving the country with the fear of this happening in foreign climes.  Colin was going to cancel his trip with Izzy but I have assured him that all will be well.  With ready meals in the fridge and nothing to worry about he can go about his small holiday knowing I am not going to be headed too far away.

I hope not!

I was playing online scrabble the other day  Izzy came over to see what I was doing and said it looked very interesting.  I told her that when she could read a little better she too could play it.She looked at me matter of factly and said "yes but you will be dead", when I looked at her quizzically she also quickly said that probably her mommy would be too.  Just how old does she think it will be before she can read anything and everything.  She is doing very well now, the teachers are very pleased with her progress.  I think I shall buy a scrabble game board for children.  I am determined to play this game with my grandchild before I die!!!!!

Collapsed drains.

My daughter Danielle has a collapsed drain at her house.  This means all the drive being dug up, excavating down to the problem to a depth of one and a half metres, quite a big task.  The insurance company have been informed but as is usual the claim just gets more and more complex.  They wanted a dvd of the collapsed drain, easily done with the cameras they have nowadays and they wanted to know depth of said drain etc.  Now all this is done they want a full breakdown of costs so whilst all this is going on it is not good to be in her house using the drain.  She is very fortunate that she can spend time over at her boyfriends house.  I wish that the insurance company would be quicker with the go ahead for the said works to be carried out, surely it is a question of health and safety, not good to have broken drains.

We are very fortunate that we have a nice man Chris in the life of Danielle, he takes over with all the things that Colin used to do.  This was getting to be quite a strain on Colin.  He not only has me to take care of and of course we are fortunate enough to look after Izzy too but as Danielle was a single parent and a very hard working one at that it seemed to be down to Colin to sort out anything else going wrong in their lives.  Chris seems to be a very able guy and he has taken on the mantle of dealing with these things.  I believe Danielle will be helping him out too such as in the decorating of his new home.  This relationship seems to be working well and I pray that it lasts.  It has certainly  taken away a lot of the stress on Colin and so consequently me.

Gem Cousins and the problems of travelling with ph.  

I opened my Facebook page today and had to smile, sorry Gem.  The picture is of Gem who is headed off to Australia for three months.  It shows the amount of medication needed for such a length of time.  I only ever had two months supply at any one time when travelling as I never went away as long as Gem is doing.  I wanted to post this just to show anyone reading this blog who does not have ph just how much suff we go through  over a three month period, quite bazar to see it all together like this, bet the airline looked rather shocked!

I remember when I was on infused iloprost and all the stuff needed, thank goodness Gem is not on this or she would almost need a whole airline to herself to get all the tackle in the hold.  I know we were told we needed to take all my vials of iloprost into the cabin with us as it would be too cold in the hold.  We had many many boxes of the stuff!  The stewardesses were very obliging as they found places for all these along with gloves,  lines and sterilising equipment etc as I needed to change my pump en route.  It made for a lot of wandering up and down the aisles as people were nosing and them telling their friends that something weird was happening!  

Have a truly great time Gem, what an amazing holiday, I am so looking forward to seeing how you are getting on with this adventure.

Right, time to go, breakfast to be had and then to make sure all the food in the freezer is transferred to the motor home.  We have a very excited like girl bouncing up and down right now!

Go well everyone, I send each and every one of you warm love  

Carole xxxxx

Friday, 25 March 2016

Blindfolded infusion and plenty testing


This is a study to see how patients with low iron can be helped by infusions.  We do not retain iron as a "normal person" so we are often low in our reserves.  Quite why this happens with us is still open to studying .  We cannot just take iron tablets as our bodies do not absorb it, hence often the need for us to have ferritin infusions.  This is a study watching and testing how we react in our exercise capabilities when we have the said infusions.  It is to see if our breathing improves as low iron hinders our breathing capabilities and to see if our hearts work better when given the extra help with the iron. There will be much more into it than that but hey, I am not an expert, I am not a scientist I am just somebody living with this disease who has decided to do all I can in the search for a cure for us. 

Transplant was out of the question for me, my age and a problem with my neck means that it is not an option.  This means that like it or not I am stuck with this disease.  There is no way back so we have to move forward and I want to get involved in the search for a cure.  I want to know that when the cure comes my being a guinea pig has helped to bring this disease to a halt, to stop it in its track, to in effect tell it to sod  off, we have won the battle.  I know this day will come, I know that every day we move a step closer, I know that there are research labs world wide with some of my blood in their freezers, that it is being worked on, looked at, analysed and tested.  

I seem to have stepped away from my ferinject study but I will come back to it.  When talking to my trial co-ordinator we were discussing various things.  Sheffield have decided to make us that trial or do studies a sort of a log book.  This is a great idea because we do so many of these things it is hard to keep track of them., The log book will say which trial or study we are on or have been on, date begun and finished or still ongoing.  Some of these studies last for years and can easily be forgotten as they just necessitate giving blood, lots and lots of it at certain hospital visits.  This blood then is sent worldwide in the search for a cure for pulmonary hypertension. Because we are a rare group our blood and our acceptance to do these studies, to give this blood is so very important.  If we had a "normal disease" there would be blood a plenty for studying but hey we are not, we are sooooo rare that we must give what we can so the researchers can do their work. 

This particular study I am now talking about is one called The Pulmonary Hypertension Blood Biobank.  It is a world leading research programme aimed at bringing about new treatments for the disease,  The collection, held at University of Sheffield Medical School has collected samples from 400 patients taken at a diagnostic right heart catheter when PH is suspected.  The biobank gathers extensive deep phenotype data to match each blood sample.  This Biobank is run at the Pulmonary Vascular Disease Unit at the Royal Hallamshire - the UK's largest PH centre.  The research is shared nationally and internationally in the drive to develop treatments that can reverse PH rather than solely fighting symptoms.  

Because PH is such a rare and diverse disease we need to keep adding to the Biobank, by the patients taking part in this study at Sheffield they are helping people worldwide in the search for a cure, you should all be proud of yourselves.

Cohort Study  Now many of us are on this and many more can take part in this very important study.  Again all it takes is for you to give blood and fill in a questionnaire, how hard can it be.  They are still looking for recruits in this very important study.  This study is with the Royal Brompton and Harefield Hospital.  Their aim is to recruit ALL patients in the UK with the rare form of Pulmonary Arterial Hypertension.  The aim of the project is to discover new mutations for the disease and to determine what environments or genetic factors lead to poor outcome, and to understand the trigger that lead to disease in patients with mutations.  For patients taking part in this study there are additional urine and blood samples as well as epidemiology questionnaires when attending for their routine appointment.  Follow up is planned for up to 5 years or death.

I do these studies and really it is no effort on my part but the research material gathered is enormous and to know that it is seen worldwide means such a lot, it means that we are all taking part in the search for a cure.  It means that we are going into battle against this so cruel disease.  We need more in our army to fight this disease so please, if you are not on any of these studies try if you can to play your part, we need as many soldiers as we can get to beat this vicious opponent in this battle to win this particular war. 

I have done other trials as I have blogged about on here before so I won't go into them, they are gone but the above are still ongoing so if you are not already participating please if you can give it a go.

Right - back to Ferinject

Well a very tiring study.  To anyone still with me with this blog, and I don't blame anyone for leaving without reading it all if you do not have ph as this can be boring to you, it was really pretty good too.
I had been booked into the Rutland, a hotel just four minutes from the hospital.  Having read the reviews, some amazing and some not so good  I was not sure what to expect but in fact it is great.  The beds were so comfy, the wet rooms enormous and the staff were so kind and caring.  food very good.  Cant fault this hotel and all they did for me.  

I was dropped off at 9.30 at this hotel and breakfast was just finishing.  However they were very obliging and made me a beautiful plate of food with smoked haddock and poached eggs, the eggs were not cooked with vinegar which many hotels do so they were great.  I had left my bag with reception and then I went to the hospital.  My first test was at 11 o clock but I wanted to visit with Laura Parker, Pat Nelson and Judith Holden.  

Laura Parker, sadly this visit was not to be.  Laura is very very poorly and she along with her family and hospital staff had made the decision for her to leave the hospital to be with her family.  I know her son is only 7 and she needed to be with him and her husband.  It was with a heavy heart I heard this news and I am sure that you all wish her a peaceful and loving time with her family and friends.  Laura is so lovely and so young to be in this position, this disease is so unfair and it doesn't take into account what a good person you are, how old you are, how many people need you, it strikes indiscrimenately.  I hope for Laura the peace that she deserves with all the people she loves and that love her surrounding her at this time.  

I spent lots of time between tests with Pat Nelson and Judith Holden.  It is always lovely to catch up with  fellow ph patients we have "talked to" over time and to meet new ones for the first time too.  Pat and I had already met so she was quick to bring me up to speed with the happenings on M2.  Judith I had never met in person but it was lovely to meet with her and chat about the hickman line she is to have fitted in April.  Having been there and done that I could explain some of the things to expect.  

This started with all the normal tests we ph patients expect at every visit, bloods, e.c.g. blood pressure etc.  All well so I was then allowed back to M2 for a short while and then onto MRI at the University MRI centre.  I always go there, don't know why I don't go to the one for the NHS but I am pleased I go where I do.  I know the people taking the MRI and I love that the machine and room is so lovely and tidy and newish.  They had to put me a catheter in as this was an MRI done with contrast.  45 minutes later I emerged from the tunnel and was taken back up to O ward, the research ward. Onto the six minute walk test, some of us hate this test.  If you do not have ph you will not understand but for those with ph it can seem like a huge battle.  However it was a good day for me and this I managed very well.  Off then for my sandwich, salad, no butter, no seasoning and to follow it a green banana!  Oh well, no worries.  Then I was told I must go back to my hotel and rest up for one to two hours to be ready for the bike test.  

After a quick pit stop on M2 with Pat and Judith, a cuddle from Proff Ian Sabro (anyone can have a hug with Ian, he is such an unassuming guy yet so academically up there with the big boys}it was back to my hotel room which I saw for the first time.  I was impressed with it and quickly got my feet raised on the bed and rested for a while.  

Back to the hospital, a natter with Pat and Judith and of course the lovely nurses and it was time to go for my bike test.  This one  I was dreading.  In I went to the lions den and Ian was waiting for me.  First of all breathing tests were done and then the machine set up attached to the bike.  The measures were taken  from my walk test as to how hard the bike needed to be to ride.  All the pads were once more put on my body and I was attached to many electrodes before I began. The horrible mask is put over your face and any oxygen in the mask was taken out for just a second to get the mask to fit tight, a weird  sensation.  Then on with the test.  It took in all around 17 minutes and it started very easy and then began the climb up the hills, horrible,  I tried as hard as I could to maintain my pressure on the pedals, I was biking at 64, no I am not sure what it all means either but  was told to maintain this.  Once I had reached my peak and the level on the front of the bike showed I was done, the levels were  dropping down to 58 the bike test ended.  Off came all the electrodes, my mask, which left deep marks on my face so tight did it have to fit I and was free to leave.  

Back to the hotel for an early dinner as I had to rest, I was so shattered.  My next test was a fasting blood to be taken at 7.00 in the morning.  

Arrived at 7.00 and blood test done it was time to go back to the hotel for breakfast.  I was informed that I must eat it at all costs before  could ride the bike again.  This time all was the same except that instead of a nice steady climb up the hill it jumped after three minutes immediately up to the peak of where I had ended it the day before.  Gosh the shock of that sudden climb!  Anyway all done, away for a natter with Pat and Judith and back to the hotel to collect my bag.  

Up again on ward O and another catheter was placed in my arm, by this time it was hard to find anywhere that was not bruised as I had had so many bloods done and the catheter for the MRI,  All done and then the wait for the ferinject to come up from pharmacy.  Now here is the thing ...........

We must not know if we are having the real thing or the placebo but if I didn't get the real thing this time then next time I would, still not knowing which I was on.  As I was sitting in the waiting room I saw a bag arrive from pharmacy in bubble wrap, to me it looked like blood, or iron, this was taken away by my nurse so I assume this was for me so in all honesty I believe I was given the real thing this time.  I didn't let on what I had seen, after all it may not have been for me but it did go into the room I was to go in a few minutes later!

Onto the bed I went, blood pressures taken, vital signs etc and then I was to have my infusion.  To do this I was blindfolded, yes blindfolded for a short while and the infusion was set up, my arm was bandaged around the lines and the curtain was closed so I could not see when the blindfold came off what was infusing!  Twenty minutes later and it was done, blindfold back on whilst the lines were taken out of me, vital signs taken and hey ho away we go!.

One thing though, I have had ferritin before and the day following infusion when I pulled m eyelids down they were a bright red, not this tine though so maybe, maybe not. 

This study will have just 60 participants worldwide.  I think it is amazing that all studies and research are shared throughout the world.  

Just before I left Mercy my trial co-ordinator gave me a big hug and said she had been concerned as there were so many tests and she worried it might prove too much.  Now they may not sound a lot to a layman but trust me, with ph these tests do take it out of you!  She then asked me if I would be included in a video and a paper that was being done to aid research.  It looks at research and studies from the patients perspective, why do we do it, how are we treated etc.  Of course my answer was a big yes so I do not know when it will be done but I will be a part of it.  

Following a quick goodbye to Pat and Judith, who I feel will by now be firm friends it was time for my taxi home, oh the bliss of walking into my own home!  

Next appointment to do it all again is 14th and 15th June.  

So there you have it, another study underway, not too onerous but tiring nonetheless.  Now I will try to get another hour of sleep in before Izzy arrives as school is closed but my daughter is working.  

Take care all, sorry if it seems boring but people need to know these things!

Love to all 

Carole xxxx        

Monday, 21 March 2016

It is my illness, please tell ME first!

I just had a call from Dean, my designated driver when I am on a study or research.  He takes and fetches me back from all appointments.  He just told me is is collecting me to take  me to Hallamshire  next Wednesday.  I had no idea, nobody told me so it is a good idea we can clear the diary.  I asked Dean when I was coming home as they wanted me for a couple of days but he has no idea.  Shame I have to ring him, or in this case my taxi driver to find out  what is happening.  I just rang my research co-ordinator to see if she can give me a heads up on this but she is away today.  Nobody else knows what is happening, they have  my name in the diary with a question mark opposite.  Just seems a bit weird that nobody bothers to tell me and that appointments have been made and taxi booked without my having any knowledge.

I received a call last week from another department at my local hospital asking me to go in on the Thursday but all was explained, I knew just what was happening but strange one this time.  Anyway I am told she will ring me tomorrow first thing.  I hope she does.  I love all my team at the Hallamshire it just made me wince a little that my taxi driver knows  more about my appointments than I do!

Fortunately Colin has nothing on other than a Thursday walk which will still go ahead weather permitting so my not being here IF they need me to stay will not be affected.  It is a super walk going around a reservoir in a beautiful part of the country so hoping for good weather.  Colin has now got his new lenses for the camera so no doubt will be talking lenses to a friend of ours from the group  Martin who used to be a professional photographer, happy days for them both. Colin is never happier than talking cameras or shots so he won't miss me next Thursday IF I have to stay in.

Update on this. My research co-ordinator was furious when she heard that I had been contacted by my taxi driver.  Apparently she needed to get all into place BEFORE she rang me, Dean just jumped the gun.  This is because he has to rearrange some of his lifts to accommodate  me so I totally understood why he rang.  The upshot is that I am to begin my study on Wednesday.  They have booked me a room at the Rutland hotel opposite the hospital for one maybe two nights depending on how I take to the infusion.  I have been infused with iron before but this may contain something a little different, I just don't know so lots of tests ahead again, MRI  RHC etc so we shall see if or how much I have deteriorated.  

The reason why I will not be staying in the hospital is that the studies and researches done in this hospital are paid for by the pharmaceutical companies and NOT the NHS so we do not use up the NHS money on any of  these, taxis, hotels etc.  This is very fair as the NHS is overloaded as it is.  

I now have a study buddy too as Mandy Leonard will be beginning to trial in April.  She is going in for her induction this week and infusion in April.  Never sure whether it is good or bad to have somebody to compare notes with but for me after the horrific time with my last trial drug I am looking forward to being able to talk to each other.   We neither of us will know if we are on the real stuff or the placebo but it will still be interesting to compare notes.       

Laura Parker is sill on ward M2 so I shall get to the hotel first, check in my bag (if the room is ready they say I can use it even though very early)  over to the hospital for some breakfast as a long day ahead.  I shall then get to talk to Laura and send her all your well wishes.  It is always nice thinking your ph family have got your backs.

Talk about a cock up.

We had talked about going away for the weekend prior to Colin taking Izzy away in the motor home during part of the Easter holiday.  When I told my friend we were having trouble booking in anywhere suitable she offered their apartment in Grange over Sands.  We were so pleased then to be headed off to this part of the country, one I have never explored despite my love of the lakes and all the time spent up there.  On arrival we were greeted by a lovely guy who lives in one of the apartments.  He told us that one of our friends sons was in the apartment with his girlfriend!  We rang our friend who was shocked that we were up there at that time as they assumed that we needed it for the Easter weekend.  Just a mistake by all of us really.  Anyway we decided we were not going home we would find somewhere else to stay.  We talked to three local ladies, one who knew the hotels around and about and we rang them all, none were available.  There were some Bed and Breakfasts but Colin hates these.  So with no accommodation in this place we headed on to a place called Ulverstone where we found a lovely hotel right on the side of the beach.  Fishermen were waving their rods around and walkers were in the hotel having coffee or a drink.  

Fortunately they had a room spare for us and so we were sorted.  Evening meal was really nice, everything home made and food cooked to perfection.  Only down side was the butter, it was so awful, I mean really awful.  We left it once we realised that it was the butter that made our so gorgeous rolls taste bad.  After quite a bad night for me, breathing very  laboured and no air in the room Colin went out to take pictures of the sun coming up.  Unfortunately  the clouds did not allow him the view he needed so he was quite disappointed on his return. Off we went down to breakfast and what an amazing menu and spread.  All the jams and preserves were home made, all really lovely except for the lemon curd, we could taste the horrible butter that had gone  into making it.  I must have had the most generous piece of smoked  haddock ever given in a hotel it was large and beautifully cooked with my poached egg on top.  Colin had kippers which were fresh, not the packaged variety.  This is certainly a place to return to when hopefully I feel better and able to enjoy the vista and walking all around me..

What a to (hair) do.

I really went for it at my hairdressers.  She put me three colours in my hair , none of then drastic so not too noticeable but in nevertheless.  When it came to the cutting we decided drastic action was needed so I said she could go quite mad getting rid of all the curls I now have, though I know they will just grow back again  It was rather scary seeing quite how much was cut off.  We then talked about adding a conditioner that leaves hair soft and shiny for weeks.  At this stage I didn't care about the cost or anything I just said to go ahead.  When it came to the blow dry I said I needed something different and different I got with my hair all flicked out front and back.  How I HATED it, I could not wait to get home to get rid of it.  Colin however really liked it and said it was nice to see me with something different.  The following morning I was straight in the shower and washing my hair to rid it of said flicks.  Colin looked at me in amazement when I finished drying my hair and exclaimed it was now no different than before. Well it is for me, it has much less curl,  it is much less weighted down and much easier to manage.  I for one am happy, I fear Colin never will be as no matter what I always revert back to the hairstyle I know, albeit sometimes a little shorter. 

Gem Cousins

Gem wrote a couple of weeks back that her engagement was over.  The strain of what lay ahead proved too much and sadly the wedding was not to be.  For sure it is hard for anybody who has a partner with ph.  The future is unknown and life as it was is curbed for various reasons.  People outside looking in see a person who appears to be just the same, they have no idea of the struggle going on every minute in our lives.  The ones closest to us however do have an inkling.  They know of the pain we suffer, of the engagements we cannot keep, of the days spent in bed, hospital visits constant blood tests to try to catch the damage caused to our bodies by the very drugs we take for our condition.  These drugs are very toxic and they themselves can damage our bodies so badly. It is easy then to see how relationships can end, how the strain can just get too much.  

Gem is a survivor, she has taken her broken engagement on the chin and is setting off for three months in Australia!  Oh well done Gem, just the thought of such a long flight stuck with the oxygen would be too much for me.  I hope the visit is all that you want it to be and that you return to your homeland feeling fit as you can be and with strong hopes for a future.  Oh and well done for the size 8 skinny shorts, how I wish I could post that about myself on here!!!!

I must begin my day.  I have ceramics this afternoon and also a board meeting to try to get back for.  We are having Izzy again overnight.  She will arrive bathed and ready for bed and have a short playtime with grandad before I do the reading and story business with her.  Up tomorrow for breakfast again with grandad and then school .  I will try to get all sorted for my early start on Wednesday morning.  I just hope this study gives me back some of my energy that has sadly left me right now. 

I bought her a new "old fashioned"  swimming costume, she loves it.  She said she wants to wear it every day!!!!

Spring is in the air, I wish you all an amazing Easter, don't eat too many eggs!  I don't know about your kids but ours get too much chocolate at this time.  As we are always very careful about not letting Izzy have much sugar  we don't give an egg, we give each of the grandchildren £10 to spend as they wish.  Once all the eggs are eaten I hope they find something of more value to spend their money on, oh I am a cruel grandma!!!!! 

Much love to you all and I hope your health improves.  One day we will take a tablet and all will be well with us I know.  

Carole xxxx

Wednesday, 16 March 2016

Not much room for a little un ...........

Why do men take up sooo much room?   I decided to write my blog today, plus play catch up on the journals I write for my grandaughter Izzy with memories etc in it.  Problem was that on entering the study I was faced with so much stuff of Colin's  around I could barely move.  Small items he purchased yesterday seem to have multiplied overnight and have taken on a life of their own.  Now our study is NOT small by any means, being in fact a double bedroom that we converted into a study with many units and desk etc but still lots of room to move around in.  Not today though.  We had a bit of a shopping spree yesterday and Colin being a keen amateur photographer decided he needed new lenses.    The box came with I don't  know how many lenses in and  these are designed to turn him into a David Bailey I believe, so all well and good but what I didn't expect today was to see a tripod looking out of the window, a camera and all the things related to it strewn all over the tops of the study units.  The chair had been pushed right to the back of the room and on the settee was the box that all this stuff had come in.  Big shift around so I can get to the computer (he won't be happy on his return from the gym) but never mind, here I  go again..............

Our cruise comes ever nearer

This is the cruise of Russia, a much longed for one of Colin's for quite some time.  As I too love the history of Russia, so complex in many ways with rulers so different in their ideas I so wanted to see it.  We decided on our ship, a Solstice one called  Celebrity Eclipse as it seems to be an amazing ship and we could have balconies big enough to take proper lounges etc instead of chairs.  On telling our friends it was great to hear that they too had been on this cruise ship last year and done the same itinerary.

We all decided to meet at ours for lunch and talk over what to expect and to see their photos.  Well to say it whetted our appetites even more is so true.  The sheer magnificence of the places they visited astounded me.  Now I have a love hate relationship with things and places such as these.  I remember that the poor of Russia were starving whist these magnificent palaces, churches etc were being built, lots of them with so much gold around it astounded me.  However what is past is past and so I am going to see the beauty of these in June.

 It is not only Russia that shocks me with things like this, on a much smaller scale just take a look at York Minster.  Yes very very beautiful but very costly too.  St Pauls  in London, and the oh so many churches and cathedrals dotted around England.  Most were built when there was not much money for the poor but plenty money for the churches and cathedrals to be built.  I don't know if I can truly say this was the right thing to do, what is wrong with simple churches and feeding the people.  This does mar my thoughts on visiting these places.  Sill looking forward to it very much.

Dare I

I am very worried about the cruise in respect of just what will I be able to see and do.  As my condition is certainly not getting any better I wonder just what level of moving around these places I will achieve.  We read that in St Petersburg most is not suitable for wheelchair users. Now I shall be taking my mobility scooter but it is rather large and though it breaks down into five pieces I myself know that it is not appropriate to take this into some places.

Now my neighbour Roy who we help out a lot and I cook him soups etc has recently purchased an amazing piece of kit.  This wheelchair folds down with the press of a button to the size of a suitcase, then can be pulled around with a handle just as any regular case.  it would be the ideal thing to take with us on this trip, leaving behind my big one.  We did wonder about purchasing one but at £2400 it seems such a lot of money and I am the tight one in this family.  Colin would buy it in a heart beat but I have refused.  As our trip coincides with Roy being at his house in Menorca and he flatly refuses to take this wheelchair with him {not wishing the people he has known for over 30 years  to see him so incapacitated} I wonder if I dare to ask if I can borrow it.  Another option is to ask if  can go halves with him on it and we use it when we go aways on holidays such as this and the Scottish trip we are going to take, he could have it the rest of the year.  We looked into hiring one of these and the price was £20 per day.  With both holidays coming up it would be costing us a small fortune to hire it so what a dilemma, I will need to think about this one very carefully.


Here are a couple of pictures of some objects, can't think of another word for them really that I made in ceramics.  The big one was done to show the ph ribbon and I put two hearts on it too.  The rest was painted black and white for the zebra.  The colour of the ribbon didn't come out quite as I had expected it to be,  that is the problem with ceramics, they can be a bit hit and miss but nevertheless the thought and idea was there so I shall keep it somewhere,  I also made two of the most horrid garish things I have ever seen in my life, how I hate them.  The idea behind them was to learn about different textures and different colours in ceramics so the reasoning behind it is sound.  It is something we all have to do at one stage of our learning. I doubt that anyone making these will display them, indeed I see most of them have been left behind in a cupboard in my class!  I decided to bring them home just to show Izzy the textures and colours etc  and was astounded when she asked for one!!!!!!!  Quite what her mom will think of having one of these in her house brings a smile to my face, she will be horrified I know.  I wonder how long before it disappears!  I hope she is allowed to keep it until her own bowl made up of hearts to show my love for her is finished.  When that is here maybe she will herself get rid of this horrid creation!

One of my Ph friends

I am not posting a name here, those that know her will know just who I am talking about has been given some very bad news from her hospital, my hospital too as it turns out.  My heart was breaking for her when she had been told of the deterioration of her condition and a supposed length of time left to live.  How terribly sad this news was and I was so pleased to see the level of concern and warm and loving wishes sent her way.  I know she has a young son and a husband so of course our love is sent out to them too at this time.  I will say though as I do time and time again lots of us have been given so many weeks, months, years to live.  Lots of us are still here, we are defying the odds and though our life is not he life we had we are living the life we have got.  I am begging her NOT to give in, to stay strong and believe it WONT happen.  The power of thought I  believe goes a long way to pushing back some of these illnesses, we won't give up and against all odds we are still living a life, though limited to what we had before.  This girl I know is a tough cookie, much loved by the hospital staff that care for her.  She has much support.  I am pretty sure she will beat the odds as we are all doing.  I pray she will be around for the cure.  I just want her to know that she has many friends here from the ph community, many people that love her and if love could cure her she would be dancing in the aisles today.  Just know that we are all here for you and sending tons and tons of warm love to you, stay strong  xxxxx

 Since posting this I am coming back in to edit as the girl I am talking about is called Laura Parker.  She is happy for me to post her name as she has been so encouraged by the support she has been receiving.  Support is so good for us all, we need it so thank you again everyone who has posted Laura messages of love and encouragement. .  She is still in the Royal Hallamshire and will be until at least the end of next week.  I am hoping to meet up wither next Wednesday.

Odds and sods

We are going away for a couple of night, Saturday and Sunday  to Grange over Sands.  A friend of ours from here has an apartment over there and has said we can use it so away we shall go.  This is really to give Colin a much needed rest to set him up for Easter when he is taking Izzy aways for three nights in the motor home.  He is already worrying about how to do her hair, I shall show him how to plait tonight when she arrives home from school.

Scrabble cheat

I love to play scrabble on my iPad but I am getting to the end of those that are ongoing and I shall then stop.  I see so many that are using a cheat app and I do not  see the point in playing as in that respect it means I am playing a computer.  I like to think about my moves, I don't want a machine to do this for me.  It means we have very little chance of winning the game.  Now I am not a sore loser at all in a fair game but in this respect I think it is now my turn to bow out of the online scrabble and go back to playing real people sitting with me rather than a computer brain!

Well I think  must leave this now and get on with my journal for Izzy.  As we had her overnight on Monday there are lots of things to put in her, reminders of the things she did whilst she is so  young. My wish would be to be sitting with her when she reaches teenage years and reading the journals together, wouldn't that be just amazing.

I shall try to get this study back to the organised mess it was when I came in this morning before he indoors returns from his gym.

Tons of love to you all, please like and share this blog.

Carole xxxx

Thursday, 10 March 2016

THANK YOU ... for the person who posted about soap and restless legs

Well who would have thought it.  For many many months I have struggled at night with very aching ankles.  I have no idea why, I believed it was a sort of hang over from when I got neuropathy from trialling DCA.  I never knew what to do, just got on with it.  However a recent post was shared and it said nobody knows why this works but it does.  The idea was that you go to bed with a bar of soap near your feet.  They said lavender but that was so the smell was pleasant.  I opted for simple soap as that was all that was in my cupboard.  Not really expecting much I popped it at the bottom of my bed and hey, who would have thought it  ........ TRULY no aching ankles.  Was it mind over matter, who knows but I don't care, I hope it continues as it was so good to not have this pain.  

I know I see many posts about restless legs syndrome and this "cure" is supposed to be for this, however it works for aches too.  Please try it and let me know if anyone else gets relief from this oh so strange cure.  The power of the mind I think will have a lot to do with this but in all honesty I never expected it to work.  I kept on moving my ankles and waited for the dreaded ache to return but it didn't, amazing.  Thank you to the person that posted this.

Testing ahead for study

Received a call from the research team.  It seems the iron study is on for me.  Apparently this entails quite a lot of testing over two days, would appreciate anyone on it to tell me something of this as still awaiting my letter.  However I am told they need to find me a hotel for two nights!  I would prefer to come home if I am not to be in hospital but I am sure there is a reason behind all of this.  So I am pleased, something that will maybe help me to head back up the board in this game of snakes and ladders we are on.

The viagara is now back in stock and so mine should be with me tomorrow.  Scary time for any of us on this medicine.  Hope we never get so close to having none again.  The news now is that they are short of ambrisenten!  I am OK with this though as I have almost three weeks supply and am assured the new sock will arrive before then.  Quite what all this has been about I do not know.  Hope all will be well in future, so stressful for us all to be told supplies are low.

Many many thanks to Patricia Nelson who on reading my post offered to express some of hers to me, it just warms my heart to read and see how much we are like a family and take care of each other.  Thank you Patricia, so lovely of you, though now not necessary it pleases me to know you would have gone to such bother.  xxx


The table saga ends here.  After a lot of work from the head of the team at the shop we bought our table it has ended with them GIVING us the table we borrowed from the shop.  Before we accepted it Colin worked on the table and we discovered that the marks on one of the feet came off very easily with special furniture polish.  He then worked on the table top.  All marks off except there is one slight dint in the side, not noticeable really unless you look as carefully as we did., practically with a magnifying glass!

I took over a huge very beautiful bunch of flowers and some chocolates and biscuits as a thank you only to find that the manager is away from the shop for a couple of days.  The assistant told me she had spent days working out a satisfactory conclusion for us and so she did.  She deserves an accolade, what a great person to head the company.  He did take and send a picture to her of our gifts, I hope she knows how truly appreciate all she did for us.

Remember and take note

Again a post that came up on my news feed.  We all live with the knowledge that death awaits us.  I don't just mean ph patients but everyone.  How often when somebody has died do we wish we could ring them, go and visit or just see their face one more time.  I think this share is so profound and so meaningful.  It deserves to be seen and shared again. Please please take the time to open the link, it may may you think and change one or two things going on or indeed NOT going on right now.  How I hope everyone  opens the link and maybe shares it with their family and friends.

MarcMary Dyer

Well what a way to go!  I opened Facebook today and saw this so encouraging  news!!  This lovely lady trotted off to see her specialist, mine too, with some home baked cakes for them.  She had been feeling very light headed recently and so dreaded the news that her levels were rising.  After a long and tiring day having an MRI and RHC she was told the news that her pressures are officially NORMAL.  The meds had done their job so well.  Now it was decided that she was on too high doses of meds and she is being taken off one of them.  Of course she knows that she is not cured of ph but for sure her life will be so much easier.  She will return to clinic in six weeks time to see if her light headedness has been resolved with the reducing of medications.  I am so  pleased to read this and I am sure you all are too.  There will be much jubilation going on in their house right now and rightly so.  How lovely to end this blog on this amazing news.

Always have hope, without hope we have nothing.  Go well my friends.

Thank you for reading.  Please share this blog as I want everyone to read the amazing good news of MarcMary, it is so encouraging and that is what we need to do, give support and encouragement to all.

Much love

Carole xxx

Monday, 7 March 2016

PLEASE can I have my VIAGARA - desperate.

I am still playing the waiting game for my viagara that I take three times daily.  I have looked in every pocket, car etc to find a few that I keep in case I forget to take mine with me.  At this moment in time I have now got 14 tablets left,  just over four days supply.  I am still waiting for H @ H to get back to me about them.  The promised call on Friday didn't materialise so I am hoping for one today.  I know they can courier them to me the moment they receive supplies but if there are none getting to them then that leaves me without.  Quite what will happen then is anybody's guess.  We are told we must not stress, it puts undue strain on the heart.  How can I NOT stress when the very tablet that is helping to keep me alive is almost gone.  If I do not receive my call today I shall have to go and see my GP and maybe he can loan me some, after all they do prescribe them for male problems, though in a much smaller dose, maybe I could have a bit of the stash allocated for them.  We shall see but I am certainly getting desperate.  Thank goodness for my two week emergency stock or I should have run out ten days ago.

Study letter

I received my "normal letter" following appointment at Hallamshire a few weeks ago.  I truly believed this would be my letter explaining about the study they had asked if I would like to participate in, the one with infused iron.  Not so, at the end of the letter it does say we are going to review her eligibility for further studies in the CRF and there may be a couple that she'd be a candidate for and we will contact Carole directly about this.  In the meantime if she has any problems at all before we are due to see her again please let me know.

An add on to this is to the Clinical Pharmacist asking if he was keeping a list of people for if there were any approvals for Selexipag forthcoming as Carole would be interested to add her name to it.

So there you have it, at the moment nothing at all.  I had become quite excited about the iron study in the hope that I could improve my breathing and tiredness,  may yet receive a call but right now I am in limbo.

Clothes shopping

How I loath shopping other than for everyday domestic things, i.e. a trawl around he supermarket.  I have never been one to enjoy shopping for clothes.  I always get it wrong and end up with something very safe and very boring.

When I was young I would shop and come home to my moms with clothes I believed were fabulous.  My sister however would take one look at them on the bed and would throw me a despairing glance as she bundled them all up into their respective carrier bags and trotted off to the shops.  All the clothes I purchased were handed back to the assistants in the various shops and off she would go to shop for the correct clothes for me.  Back home she would arrive with clothes I would never have looked at twice.  On then being instructed to try them on I was always surprised as the clothes transformed me into somebody I didn't know, someone with a sense of style.  I wish I had this sense, my mother had it and my middle sister still does.

She rang me whilst I was shopping to see how I was.  On hearing I needed new clothes she asked why on earth I was going without her!  She has had her own medical issues so I never like to ask her to go to the bother of having a shopping frenzy with me.  I was so pleased  then when she herself suggested we go shopping together and she would find me some nice bits.  Can't wait, in particular as we are still hoping to go on our cruise to St Petersburgh and some nice clothes will be a must for this.

To go with my new clothes, well when I buy them, I decided my hair should have a make over too.  Once again I never bother over much with my hair, I tend to stick to the style I am used to and it worked very well for years.  Over the last five years however it has began to curl, how I hate it.  Straighteners are now a must and as  have thick hair I never quite get it right!  My grey is showing through all around my face now so I asked my hairdresser for a dye.  I am dreading this on so many levels.  I hate being faffed around with, hate sitting still for long stretches at a time as my heart begins to thud very hard in my chest, as if trying to escape.  At home I drop into my recliner chair with my feet stretched out and it calms this beating heart, no recliner at the hairdressers.  What if the colour doesn't suit me, though I am having it a similar colour to my natural one with just a few highlights a shade or two lighter.  Oh how I am dreading this.  So I have a few hurdles to cross in the next couple of weeks.  Will I emerge looking more girly instead of my usual jeans and tops or will  emerge like mutton dressed as lamb, I shall tell when all is done.

Karen Farminer

The funeral of Karen is today, were it not so far away I would definitely have attended to pay my respects.  Many of us owe such a lot to Karen and I am sad that I will not be able to be part of her final journey.  I pray it goes well.  The day is a fabulous one here with the sun shining.  I hope the weather is as kind down south where the funeral is taking place.  I am sure there will be lots of happy memories being talked about and much laughter as well as the tears.  She packed a lot into her life did "our Karen" and I hope these memories help her family to cope with such a sad day.  Goodbye from me here Karen and thanks for the memories.

Leanne has posted a few pictures of the casket her mom is in and the flowers.  Though it sounds gruesome I am so pleased as it really does make me feel to be a part of it.  Karen is having a casket, as I too have put down on my wish list when the time arrives. I am pleased about this as I feel pretty sure it is what she would have wanted and discussed with her family beforehand.  I was so pleased to read that Tess Dunn `attended and she said it hd been a beautiful service.  I know Karen helped Tess so much so what a lovely thing to do, to say goodbye in person.  

Oh the bruises

I am going to go for my blood tests earlier than I should as I have come out in many unexplained bruises.  I am a lot more careful now since my inr level was once 14.8 and at least we know we are being cared for, and so begins another wait in another hospital room for another test, story of my life!!

And the table saga continues ...........

A telephone call over the weekend brought us up to date with our wait for our table ordered in November.  Ours was given to somebody else after we had waited 11 weeks as I was told I had refused delivery.  This was a down right lie which was later admitted.  Anyway as we have been given the table from the showroom we are ok but non the less we did wonder where our new one was.  Well we found out yesterday that it will not arrive until MAY, so a table ordered in November will take 7 long months to get to us.  At first I was livid but now I just think well at least our table when it arrives will be brand new and we get to use their table for now.  There was a suggestion that they remove table and chairs and refund our money but as they fit so nicely into our space and the colour scheme all matches so well we have declined.  I do not think I have it in me to go table shopping at this time and begin the saga all over again.  One day I do believe we will have our own brand spanking new one.  Oh they also suggested we buy their table at a knock down price, this too was declined.  We want what we ordered and have already paid in full for, maybe one day we shall get it.

History unearthed

As you must know by now I do love a little history.  I was pleased to open on my Facebook page a post sent out by John Eastwood, possibly the best director our local theatre ever had.  It shows the most amazing mosaics discovered in an ancient greek city.  Click on the Link below: -

Read the story of these mosaics and wonder.  How clever and talented were the people who crafted these so beautiful pieces of history.  How I would love to have been with them as they steadily scraped away the soil of centuries to reveal these amazing pieces.  I also loved to read that there is still much to evacuate of this city, once a home  to 80.000 inhabitants.  Wow, would be a place to visit when all is completed though it will take many years yet.

Must leave you all now as I am about to go over to Leeds to meet up with my son and his girl.  I spent a lovely couple of hours yesterday with my daughter,  her partner and grandaughter so how lovely to get to see my son now too.  

All have a good day and stay well.

Thank you for reading, liking the page and sharing.

Carole xxx

Thursday, 3 March 2016

Awareness of ph and giving help is spreading.

I was very pleased to see a message from one of our PH patients asking questions about the hickman line.  We ended up chatting for many minutes and it was so good to talk in this instance!  When I began this blog it was to let family and friends catch up with what we were up to since my diagnosis. However over time it has changed as I have been able to reach out to people to spread awareness and also pinch or borrow from other peoples posts videos showing progress regarding help  or a possible cure for ph. This is what it is all about.  We need to be able to reach out and we need to be able to help newly diagnosed understand  and talk to them in laymen terms.   I think these forums are a very valuable tool for reaching out to people diagnosed, or caring for somebody with ph. 

So it was that I was able to tell a certain member all about the hickman line.  I was able to tell him with all honesty about the procedure right the way through to the handling of the line and possible side effects.  It made me feel very pleased that he had found me and that he felt he could ask the questions that needed answers to.  Of course his specialist team has spoken to him about it but they have never experienced one for real, nor the side effects and not also the jubilation felt when the line manages to push our pressures back to an acceptable level so we can begin to take oral medication. I pray that he goes well with his line and that we keep in touch.

Does he know ANYTHING at all?  Idiot .

I read with horror a post yesterday from somebody who had been told categorically by her doctor that ph does not cause shortage of breathe and that exercise capacity is not impaired by ph!!!!!  Where the heck he was coming from and which page of the hymn book he was singing from we will never know.  One thing that is for sure is that this particular member needs to change her doctor very quickly.  Whilst we know there are very few doctors who know about ph once they do learn that ph exists one of the most fundamental things that is taught is that this is exactly what happens to us.  Our breathing is massively impaired and our exercise capacity is very much diminished.  Slopes and stairs are such a no no for us. Lifting anything heavier than ten pounds is out too.

I pray she has changed her doctor and is now with one that understands, or at least researches  ph once he has her on his books.  Also that her pulmonary centre sends her enough paperwork so that she can show he GP exactly what ph does to us.  Maybe this doctor could even use Dr Google to find out some facts instead of dismissing it the way he has. Whilst I do not advocate  Dr Google for lots of things as it is so out of date in this case it can give some insight into this disease.  Does her Doctor even own a computer! I also know that Doctors can delve further into medical matters on a computer than we do as they have a special number they log into and it opens up more up to date facts, why can't he do this.  Were he my doctor I would run run run for your life.

Predicted a  snowy Easter

Well the site is booked and one little girl is very excited as she will be spending three nights with her grandad in our motor home in York over the Easter period.  The weather is supposedly going to be very snowy and icy so to that end I managed to procure a new pair of fur lined frozen boots from Sainsbury's'  in the sale at a knock down price of £4.80 reduced from £16,  result I think.  Sleeping bags have been washed in preparation and the motor home is being serviced ready for the off.  It will be interesting to hear the news each evening of how the day went.  One attraction Izzy was keen to visit  again was the Jorvik Centre,  she so loved this, in particular the guy having a poo behind a shelter of privet edges.  We have told her this is no longer available to go around due to the floods, extensive damage has been done.  It will take a lot of money, lots of donations and lots of hard work to have it back up and running.  It is so sad that this was hit so badly as it showed an amazing story of life in York so many hundreds of years ago.   

Kath Graham

The  book is here!!!    It has been published and it can be bought through Amazon.  Just look for Kathryn Graham and the book is entitled Life Is For The Living. Already Kath has raised over £1600 for the transplant team that carried out her operation and the ph society as a whole.  This money was raised just by a private launch she had and does not take into account sales that are going on via Amazon.  How amazing is this and I wish her well with continued sales of this book.  Kath has worked hard to produce it, in particular as she herself is the recipient of a heart and lungs and the going is not always easy.  It is an amazing read and very inspiring.  For anyone with ph, or a carer or indeed alone on a transplant list of any kind this book will give hope and encouragement.

Which is it to be, Study, Trial or play the waiting game?

At my last hospital visit and on being told there was nothing else for me except the hickman line, which I will accept gladly when we believe the time is right I told you all that I was then rung by my hospital to see if I wanted to participate in a study.  The study was to infuse me with iron, or placebo to see if it helped get me some strength back and better breathing.  Well I have STILL not received any paperwork with regard to this.  I know that the trial I was told I can go on will be available to us in April.  Now my thoughts are these..... should I leave the study alone and wait for the trial drug, only a few weeks away or wait patiently to hear about the study, take that and then hope that selexipag becomes available here in the UK as it is in America?  It can't be far off can it and I know that it takes a form of the medicine called iloprost which worked well for me. only taken orally instead of infused,  decisions decisions.  If I don't receive my paperwork for the study drug soon it may make my decision easier.  I hate playing the waiting game.

Whilst on the subject of waiting games I am getting desperate about my delivery of Viagara.  Health Care at Home delivered weeks ago an amount,  though it was short by around half.  They gave me a slip that said they "owed me" the rest.  Two weeks later I got another call to say they STILL don't have enough for me.  I am now using up my reserve stock, I have three boxes left.  I take the original Viagara and not Dr Reddys, {can't take these as they made me very poorly and didn't work right in my body}  I take full strength 100 mgs three times daily.  I need these tablets.  We are told time and time again that we must not miss one, our hearts could go into heart failure.  So where are mine, what happens if they can't get them, what is the problem?

I know NHS are short of cash, I know my tablets cost an awful lot of money.  I sometimes wonder if they are struggling to get me the funding now as I can't take the cheaper option.  It seems strange that they STILL can't get me these tablets, there must be something more going on here surely.  I shall ring them today and see if I can get any answers.

Does anyone else on here in the UK have a problem with getting this drug, would love to hear from you.

Update on this saga.  Rang H @ H and asked the question, where are my tablets.  I am told that there is a shortage but they will ring my hospital to see if I can be given any other ones as "there are many different forms".  This terrifies me as I have tried and failed miserably with Dr Reddys and this ended up with my levels rising quickly as the tablets were not working and I felt so poorly in the process.

I would love to know the answer to the question as to why there is a shortage, been waiting a month now so what is the problem.  More than likely never get the definitive answer to this.

Well I shall try to get to sleep again.  It is very early hours here in the UK.  Colin will hopefully get this blog out for me when he wakes up, he is fast asleep, how very fortunate for him.

Go well everyone, thank you for reading this blog and liking or sharing.

Carole xxx