Tuesday, 27 August 2019

I CERTAINLY OWE THIS LADY MY STABILITY - DO YOU?

As most of you know we have been away again in our motor home.  One lovely consequence of moving around means that I just might be fortunate enough to be in the vicinity of another ph patient.  This time we were in Norwich.  Beautiful place this certainly is and we spent a night on the drive of our niece and her hubby.  This couple certainly have the green finger touch and I was so shocked as to how their garden had come on since the last time we saw it.  Veg were growing in abundance as was fruit, the chickens were laying well and I can testify the fennel was certainly showing who was boss as it kept catching around me as I went from motor home and into their house.

Our welcome was a very warm one and made all the better as they had no idea we were going to park on their drive until the evening before. Whilst I was there I wrote a post asking if anyone lived close by. Mandy Leonard wrote that she did, in fact only around 7 miles from where we were. Without ado off we went  to park on her drive and have my first ever look at this lady that I owe so much to.

Now yes I know about my A Team, I mention them so much but I knew just what a huge debt I owed to Mandy.  You see Mandy was diagnosed with PAH around 2005 after having symptoms for years before that. Now those of you with PAH know that the new meds are slow to come onto our space, slow to be allowed etc although as we are are a rare breed we do get special allowance from the government to say that ours can be given to us without all the delay needed for most meds.  That is because without our meds we absolutely will die.  

So think on this -  here we have a lady who had never heard of PAH, scared for sure and not really much out there other than channel blockers, bosenten and iloprost etc.  The specialists got their heads together and after talking to Glaxo Klyne who was hoping to trial a new drug they believed would help they asked Mandy if she would be willing to trial it.  There were just 6 people trialling this med.  Generally when I trial there are around 20 so only a small number for ambrisenten indeed.  Well long story short really as those of you on it know the success of this particular drug and that also unlike Bosenten which has a greater danger of the two drugs to cause liver and kidney damage this med appears to be a good one for PAH.  I myself switched to it after coming off the hickman line and have been so grateful ever since.  

After the trial the drug was expensive and the government just could not, or were not willing to pay for such an expensive medicine right there and then. It all needed to go before boards and talked about at length. The drug company though saw just how well Mandy for sure was doing on it, I cannot say about the others as I have no knowledge. They allowed Mandy to continue to take it without charging the NHS who would not then have allowed it and always asked how she was doing whenever her packet of this life saving drug was ordered. In time of course the drug was approved and the money found to allow the drug to be available for the many of us.  Thank goodness for that.  

Mandy looked great, here she is 15 years after diagnosis keeping a beautiful home for herself and her hubby and son. By the way her son is really gorgeous if there are any young single girls around that area!!!!!!  He just might kill me for that. Anyway the crux of the matter is without this drug I just might not have remained as stable as I am. I might have liver damage or kidney damage etc.  So yes to me Mandy is top of my list for helping me to remain alive after my initial diagnosis.  It is thanks to people like her that I decided to trial as I knew of the benefit I was getting from drugs trialled by those before me.  So yes  - Mandy a HUGE thank you to you and I hope you continue to do as well as you are doing. I will not give up trying to persuade her to attend our conference.  A lot of the newbies can see how well she looks 15 years after her initial diagnosis.  It will certainly be a huge boost to their minds.  

Home again

My family next door are home again after their holiday.  It sort of felt lonely for the few days we were home and they were not.  Nobody running around the garden, no rabbit hopping merrily around in the sunshine and no faces at the window.  To welcome them back I took them flowers from our garden for their family room and a few sweet peas for Izzy as she loves the smell of them in her bedroom.  They asked me to get them bread and bacon as they were craving a bacon butty!  Turkey of course does not serve pig and though they rarely have it here I think it is what you cannot have you miss. So up got Chris early this morning and made bacon sandwiches for breakfast for himself and Danielle.  Happy faces for sure.  

We appear to have got rid of Mr Fox as he has not been seen for over two weeks now!  I hope it continues.  I am giving the box of bone and fish meal we bought for the garden to a friend as studies show that foxes are attracted to it, anything to stop it coming.  So there you have it, it appears that male urine, lots of it, in particular the first morning wee and my smelly dousing of all the plants with boiled up garlic and scotch bonnet chilli seems to have worked.  I am very relieved.  I used to see it in the driveway at 4.10 am each morning. Strange how it always came at the same time and I always seemed to be up making a call of nature. Anyway I saw it three times in the same place at the same time.  It must then have run around and came back to attack our plants from a different angle.  Well no longer does our drive smell of fox pee and poo.  

Today I woke up feeling good, no PHAT day for me {pulmonary hypertension arterial torment} or at least very little.  Would that all days were the same. So as we had just had more indian paving stones put down at the back of the house I decided to jet wash all the ones that were already down.  They were certainly grubby compared to the new ones.  I ended up with sand in my hair, face and I will not tell you how bad my clothes were as they were unbelievably bad.  Chris said, and he was correct, I should have worn my outdoor wet weather gear but the sun was blistering hot and I think I would have died!   The problem is that doing one job sets up another.  The sun terrace threw all its sand onto the bi-fold windows and so another job to do, plus all the glass surrounding it needed to be sorted out.  Fortunately I did manage to complete the job and did not have to hand it over to Colin who himself was working very hard cutting all the hedges.  So I am rather proud of my accomplishment today and thank you pressures for staying good whilst this was going on.

Pressures

Talking about pressures as you know I have the cardioMEMS machine.  I thought I was doing pretty well, I really did so it came as a shock whilst we were on holiday to be rung by a member of the team and be asked to make an appointment to see Alex.  It appears my pressures have been steadily rising for some time.  Strange how today must have been good for me to do the job that I did.  Yes I do get  tired a little earlier, I do puff a little more than I did and yes that annoying cough is showing its ugly head a little more but generally I have no complaints.  Anyway the top and bottom of it is that I have an appointment at the Northern General in Sheffield on the 12th September.  

At the same time I attend this appointment  I believe we are talking about two trials and hopefully one that just might be ok for me to join.  I know many of you  - like myself - are still waiting for Nick Morells trial from Papworth but I have heard nothing about it being that one though I will of course post if it is.  Well of course I will post no matter what trial so watch this space.  

Looking ahead

Loads of lovely things to look forward to which I believe gives me a huge boost.  Our niece is coming to stay, though just for a couple of days. I have a lovely ph friend called Paula Joanne Smitham and her fab hubby coming to stay for a few days in September too and just maybe, in the offing a friend who lives in America might be able to come over and stay with us for a while.  We also have a holiday booked a little later back in Javea and have already pencilled in lots of diary dates to catch up with our many friends who live in this beautiful town.  So I will certainly do my best to keep on top of things, to stay healthy and well.

Ah there goes the bell.  I am hoping it is a small package containing the sheets that are now used on top of the barbecue grill. Chris uses them next door.  The food cooks well with the lovely lines on that come through from the grill and no need for a messy clean up.  You just wash the sheet or sheets out with hot water and put it away until the next time.  We were amazed when we saw him using them and for sure the worst part of any barbecue is the clean up.  Now it will be made so easy we might use ours much more than we do.  

Izzy

Well now she is home tomorrow I will have her pick her first apple off our tree, pick her first strawberry and cut green beans for tea. I want her to learn to enjoy the garden and I believe if there are nice things growing it just might encourage her more.  Colin is still to make me my raised bed to grow more but I have done ok.  When the bed is in I will ask her to help me to choose which fruits or veg we plant.  She loves her veg so we should get a good variety.

Right all for now, I made a curry for tea yesterday, yes even in the blistering heat and now we are taking it down to our friends house and will all enjoy it whilst sitting in his beautiful garden. As we are still without a lawn we cannot do that here yet.  I am so hungry as I have put myself on a diet since hearing my pressures have risen, maybe that might be the reason, who knows. Anyway we have also just been out to buy a water butt which seems to fascinate Izzy, I do not quite know why and that needs to be fitted today. We also purchased lots of crocus bulbs to plant as it is a perfect time once the top soil has been laid and she can do all the bending down to plant! Slave labour for sure.  Just maybe I might buy her an LOL if she does well.  

Take care, enjoy the sunshine and I will speak again after my appointment at Sheffield and let you know about new trials and my pressures etc.  

Warm love to all.


Carole xxx

Monday, 5 August 2019

STILL HERE - STILL PHIGHTING THE PH

Yes I have had another anniversary since being diagnosed, 9 years on!  To think I am still here, still phighting is rather incredible seeing as the specialist who diagnosed me could not promise six weeks!  Thanks to my amazing A Team here I am, nine beautiful years later.  Sure it has sometimes been hard, a tough road to follow or a high hill to climb but with their help I have done it and continue to do it.  I sometimes wonder quite why some of us make it so far along and others do not.  My heart grieves with every one lost to this incredibly horrible illness, I hate to see the pics of the new babies born with it, seems incredibly unfair. I am always so pleased and thankful we have such amazing specialists worldwide who go all out to give us a life. No we know the cure is not here yet but I always have the hope, if not for me then for those that will come afterwards - one day!!!!!  So 9 years on and I am so blessed to still be here, still making memories.  

Busy busy busy

Not all bad kind of busy though for sure some of it. The dratted fox still comes, though it did stay away for a while when I laid down a cocktail of hot peppers and garlic.  Sadly the smell wears off and back the thing comes to burrow under my well tended plants.  I have had Colin peeing into containers and putting it around the plants as it does say it can put off a fox as they are territorial, not this one though.  It appears we could put up a huge fence to keep it out and block all holes etc.  Hate the thought of this though as it will also spoil the views and we have incredible ones from everywhere in the house.  I could not bear to look out and see fences all around me.  Well we shall see what we do next when we have had time to look online again and make decisions.  I have read that Lion Poo is a great deterrent but sadly not too many lions around our parts!  

We have just been on two holidays which has taken up much of our summer so far.   Our first one was to Cambridge where we stayed on a site in Houghton, owned now by the National Trust.  What a fab place this turned out to be with a beautiful river flowing through the grounds.  There is still the old flour mill and it is put to use on certain days of the week. It was very interesting to look around it.  Thickets abound this place and lovely shaded walks are the order of the day.  A really nice one takes you into St Ives, no not the one in Cornwall but a beautiful small town and other small villages are very definitely worth seeing. Houghton itself has  much to offer, with two great pubs and beautiful thatched cottages that really do deserve to be on the front of chocolate boxes.  We thoroughly enjoyed our stay here and intend to go again when we have the time.  I love Cambridge as my family from the year dot were all from here and there is much for me still to find out about my family tree.  

Yesterday we returned from a cruise around the Med, we took Izzy with us as she loves cruising.  On our way down to catch the ship we called in at Poole for a day to see family, it was the first time Izzy had met her two cousins and they had a great time playing in the garden while we all caught up on events.  The weather was very good to us, in fact too hot even out on our balcony so often you would find me in our air conditioned room after we arrived back from our trips to the places we stayed at.

Our first Port of call was Gibraltar and we managed to get a picture of a family of Apes up on the rock.


Izzy was reluctant to get off the ship and would have preferred to stay on it at all times but we did manage to persuade her by offering her many games of golf once we got back on board.  She did get very proficient at this and often beat the pair of us hands down.  She refused to go to the children's club other than for the 20 minutes trial we said she must do. She hated it. So it was all granddad until typically the last few days where she made a lovely friend of a girl called Olivia.  This was thanks to Olivia having a ton of L.O.Ls so they spent time playing with them and touring the ship, playing games etc.  

My amazing cardioMEMS machine travelled well and each day I plugged it in and did my bit so that my specialist Alex  and or team could read my pressures. Some days the results would send easily, others not but they did all go off as soon as we reached a port with a strong enough signal.  As I never heard anything from my medical team I of course assumed all was well and so I hope this pattern continues.  I do wonder if one of the reason I remain fairly stable is because of the denervation I had. Maybe microwaving part of our small bronchi is the answer for stability. Only time will tell but Alex did say that there were a couple of trials I might be interested in so I am looking forward to getting his call. As you all must know by now I am always open to trials or studies.  One day the breakthrough will come.  

I did do my best to not overeat and we were both pleasantly surprised to see our weight has remained the same as when we boarded the ship.  We both exercised daily with Colin heading off to the gym first thing before breakfast, well he does it at home so it must continue whilst on holiday.  I know that for me I need to walk.  If I do not I feel terrible with this ph so I would go up on the top deck and walk the laps - 9 laps equalled one mile.  I would always have the goal of 40 laps.  Sometimes I walked with people but mostly on my own as I prefer it that way.  

Izzy ended up on TV!  Well only the ships television as on day two of our holiday her new swimming top that protects fro UV rays went missing. Colin had taken it off her and put it to drip dry on the shelf in front of our seat.  We bundled up our things to return to get ready for our evening meal.  As soon as we got in Colin realised he had left the top and went back for it.  It had gone.  Though we tried daily to see if it had been  handed in it sadly was not.  Chlo the entertainment host did a small piece with her in front of the cameras.   

Izzy was dressed in all her Spanish gear we had just bought her and looked so cute.  Chlo had her talking about her holiday,  and so it went out on the tv.   This is a channel where all the news of what is happening the following day are shown.  Her top was never handed in.  It did seem strange to me that it was taken and left a bad taste in our mouths for the rest of the holiday.  

We watched a show each night with the Ice Skating one being the most spectacular.  I must say the shows on board this particular ship were not the best, I have seen some that would eclipse broadway on other ships but non the less they were entertaining and only lasted 50 minutes, long enough to sit still in one place.  

When we go away I do stay off social media mostly as it is nice not to bother with the computer.  I did wonder though how people were faring and I do hope everyone is doing ok.  

Once again we returned home to a spic and span home but not sadly outside due not only to the fox but also the weather!!!  My goodness our garden was hit badly with it and despite a friend coming up to check it over it has taken all morning to get things back in order and a trip to the tip with all the rubbish from the dead heading I had to do. Colin dug up two potato plants that I had simply planted and did not bother to hill as I just wanted to see if they grew.  My word just the two measly plants, not tended or cared for, not hilled etc came up trumps.  I do dread though just how many we have in the potato sack that I lovingly tended.  We do not eat many spuds so I do believe I will be giving quite a lot away.  I am just leaving these out for a day to begin to settle and then they will go into a dark place until we require them.   

It was lovely when we were at sea not to bother with the papers and not to see all the terrible things happening in the world.. Back to reality to read that a 17 year old boy threw a 6 year old boy, (unknown to him) over the rails at the Tate Gallery where he landed 5 floors below on the roof of a building. Had he fallen the whole ten floors he would have been dead for sure. This poor boy was being held in his mothers arms when this young man came and pulled him away and hurled him over the rails. What on earth is happening in the world today.  What with that and shooting going on and knife crime it is sad that we have to live like this. We had two weeks shutting out all of this and it was bliss - now we are back to reality.

Izzy is spending the week at Stage School to give us a much needed break. As she has never attended  one before it should be interesting. We are invited to a show at the end of the week so will see how that goes. It does surprise me when I watch her now as gone is the timid little girl we once had and now she is a confidant girl and happy to put forward her own ideas and put her own stamp on things.  

(An add on to that paragraph as I have since been round to see her and Danielle told me the head of the school took her on one side and said very quietly that she does not normally offer places to children so quickly but she was so impressed with Izzy she has said she can join if she chooses, not just holiday time.  Izzy is a bit wary as she said they are going on holiday, - the school  - next year to Disney and she does not want to go.  Of course she loved Disney when she went with her mom but away from her mom is different.  I think she might change her mind in due course. 

Anyway we are back to reality now and instead of the sound of the waves lapping against the ship we have the cows lowing in the field opposite. Sometimes it can be sheep and sometimes cows. I did miss this sound when we were away.  Now back to hospital visits, blood tests almost weekly etc but also the fun singing group I have joined and the Pilates class that so far is helping with the pain in my neck really well.  I do believe that both these groups have benefitted me, expanding the lungs with the singing and the exercises in the Pilates to stretch the muscles and bones.  
I am a great believer in exercise and these two classes suit me so well, plus all the gardening which has now produced our first crop of potatoes.

Well, all for now, much to catch up on.  I shall try to read what is happening on the ph sites now I am back.  

Much love to all, stay well and stay strong.


Carole xxx


Tuesday, 18 June 2019

LIFE IS JUST A BOWL OF CHERRIES - well not exactly

Getting on with it

Many people say about we ph ers how brave we are, how we do not make a fuss and just get on with it.  The truth is what option do we have.  To sit and moan at family and friends wold soon drive them all away and would also impact on our own lives.  As I have said before to sit and moan does not change your diagnosis, it does not make any of this go away so yes - whenever I can I do just "get on with it."  I do my best to live a full live, although of course limited because of my condition.

Now if I listen to the latest fact which say we can, if the meds work for us live to eight years now  then I, like many others are defying this.  I am coming up to my nine years diagnosis which was in fact on my birthday - 21st July - nice one huh.  So  I continue to defy the odds, little old me who never believed it was possible.  Yes here I am, sill "getting on with it" to the best of my ability and so hopefully will continue.

Life is not without issues.  I recently suffered bradycardia which is a very low heart beat.  O.K for athletes but not for me.  This is quite frightening as if I read it up on google, (really should not but hey ho we all do) it does say that our hearts can suddenly stop beating, likely when we are asleep as our hearts generally beat even lower then.  So for a few days I must confess to being rather nervous.  To try to combat this I did energetic things to bring my heart beat back up rightly or wrongly.  Though my beats did rise as expected they quickly fell back to being very low.  Quite why this was happening I had, nor still have any idea but the fear that I would just go to sleep and not wake again without all my affairs being sorted once again (yes been done before but things change) did worry me so I am making it my goal now to deal with any issues that need to be resolved  it is too late for it once I am gone -- and putting new letters in my piles to be read after my death.  This is not a morbid thing but just another one that needs dealing with now.  My oxygen level has been falling rather low recently too,  again something that needs to be addressed and I will deal with that shortly.

So here I am in a zone that not everyone with ipah will ever have reached but I am comforted in knowing that some of my ipah friends have reached that goal and gone way beyond it.  I pray that I too am in that position and have quite some time to go on this earth.  I never really listen to our life expectations as I have beaten them time after time so once again I will now push this one away and move on to the next - just as all my brave pah friends do too and I will just "get on with it" once more.

So yes life is just a bowl of cherries, some nice ripe and juicy days and some that - well to be perfectly honest are like a cherry just on the turn, a bit yucky but still looks great on the outside!  With the support of my family and friends and of course my A Team once again I will soldier on.  I have much to live for and enjoy, ph will not stop me enjoying life.

Rewarding but oh such hard work

As our garden continues to develop we see many neighbours stop at our wall for a chat about it.  It appears to be generating a lot of interest as they all watch the progress. Yes even in this awful weather we have been having Colin continues to go out in his muddy wellies  and shift around heavy sleepers, made even heavier with them being continuously wet and dig trenches for them to go in.  Once sleepers are in he has been riddling our tons of soil, all spoil from making the garden  all in a heap in a small part of our garden.  This is to get decent soil for the beds and raised beds, of which we now appear to have many!  So it is encouraging to note that our neighbours  are all very impressed with how this once - what we thought small garden -  now not so small is coming on.  Once all the shrubs had been removed, around 30 feet we think it has really opened up our space.  

Though we did posses a "real riddler" it appears to have gone walk about right now. However this matter has been dealt with in a most satisfactory way. Our good friend Michael came up with an ingenious way to riddle. He called at Lidl and asked if he could have a spring onion box. Now these come with los of holes in them to allow the produce to breath. Lidl was only too happy to help and gave it to him so he riddled a few barrow loads to begin the process. Since then I go to Lidl often to get more of these as they do not last too long, maybe a few days but handy they certainly are.  We now have about five of them and all put to good use.

Yesterday I just had an urge to see if I could do it. I had been stopped by both Colin and Michael in the past as they thought it would take it out of me. Feeling positive I went out and between Colin and myself we devised a working plan.  I cannot lift the shovel to fill these boxes but clearly Colin can. So there we were me lifting the boxes Colin filled and then sat on the edge of the wheelbarrow. I would riddle one and then leave it for Colin to empty the small stones out and refill.  As he was doing this I have moved on to the next etc.  We were both delighted as to how quickly working like this we filled barrow loads with good quality top soil.  I was so proud to see the raised planters being slowly filled and with compost added ready to receive plants. I managed to help him to fill about seven barrow loads before my beating heart and my shaky legs said enough so sadly I left him  to continue and I came inside to lie down. Still once again  I achieved something I was told would be too much for me so never say never should now be my new motto. Today I shall go out and fill some of these beds with the plants we have waiting. We have deliberately decided to keep one bed narrower than the rest and we shall put up trellises and grow beautiful climbing flowers, evergreen that throw out gorgeous flowers at certain times of the year so if any suggestions - we already have sweet peas - please tell me.  Not ivy as we have some outside on the rockery and that is ample for us.  Remember we live in the UK with quite varying temperatures too so they need to be quite hardy.  Suggestions please.  

I am now a member of the happy to compost group.  Daily I manage to find things to compost after I have given the best bits to the rabbit.  We are not waster of things but inevitably in all households there is waste.  I now crumple up old toilet roll things, you know what the toilet roll is on when we buy it, name eluded me totally! I compost our used white kitchen rolls along with banana skins, pineapple rinds , melon skins etc.  t is amazing how much waste we have but clearly not fit for human consumption so I am pleased to be able to put it to some use this way.  Today  shall go and purchase a water butt.  Sadly no place to put it yet but there will be shortly.

The space in front of our utility windows is to be used to house a small summer house and we shall have it flagged so that we can put a fire pit on it and cook over it on clement days. The bar b q will sit off to the side of it and then will be my bit of garden to grow a few veggies.  Though this is quite a small space I feel sure it will look amazing when completed.  Already there is a huge pile of hard core in a heap waiting to be put down and once we have some trellis and a bit more fencing erected this project can begin.  I still am waiting for my washing post to be erected so still using my daughters.   I fear my need for my own will be the very last job to be done.  We are making use of the very many blocks that were taken up from our house before we began to build.  Colin has decided to make a path out of them at the very bottom of our garden and Danielle's  - bet it is completed before I get my my washing post!  

We managed to get rid of the huge pile of wood chip that were left on the path by our friendly landscape gardener.  Much went onto our own beds and some is in bags waiting to be used later on.  We then put more down on our family next door steps ass though they had some we used some of ours to make theirs thicker, it looks much better.  We were then talking to a good friend of ours and we just mentioned we had some here.  He was after some so he came with his lovely wife and a load of bags.  He took all that we had left so it was a very successful mission getting so much and using it all up. All were well pleased.  

Looking ahead

We have our cruise coming up in a few weeks and once again our lovely cleaner Lucy will take over our house with her husband.  On the way down to join our ship we are staying overnight in Poole so that we can visit with some of our family.  We do miss them and always look forward to pleasant times spent together,  My sister in laws health is not too good right now as she has suffered yet another blow to it but like me she 'just gets on with it" so I am so looking forward to seeing her and giving her the biggest hug I can.  We are hoping that later they will be able to come up here and spend a couple of weeks staying with us.  Our niece has now given dates she can come up from Norfolk to visit with us so again how lovely it will be as we have not seen each other for years!  These visits along with one to come from a fellow ph friend and her hubby later in the year are all dates on our calendar to look forward to.  Colin is leading a walk up here in Yorkshire for the Costa Blanca Mountain Walkers that are here for the summer.  One couple booked down for that will stay overnight with us so lots to catch up on there too. Again all positive things to make our future one to look ahead to with pleasure.

Oh bummer!!!!!  After this I said  was going to plant out but the weather has turned and it is pouring down!!  unlike Colin  I hate to wade through mud, our lawn is still not laid so to venture out means walking on the bare earth or planks of wood laid down to make it easier.  So I will just have to hope it does not rain too much as I really am longing to see these man made planters that deck the garden have some beauty in them instead of just bare (though beautifully riddled and composted) earth.

Just things!

Tomorrow I have an appointment to hopefully get more insoles to make life easier.  I walk over to the right on both  feet and though we did have some ridiculously expensive, though well worth it insoles made they only fit my walking boots.  These have made a huge impact on how I walk when I am wearing them but clearly not for everyday shoes.  After lengthy appointments with specialist that deals with this and physio to show me exercises and my notes being lost I can now, after eighteen months at last see the people who deal with making and fitting these.  It will make my life so much easier and hopefully take away some of the pain in my right hip and lower spine.  This will make a huge difference to me so this is one appointment I am rather excited about.

One appointment I am dreading is coming up next Friday.  That is the hairdresser.  Oh how I hate these.  My  hairdresser is truly lovely and so she is not the problem.  I just hate having my hair messed with.  
I have left it way too long and right at this moment in time I do not even bother to try to straighten it so I look like a shaggy dog.  My hair is also in my eyes.  I loath that my once lovely straight hair turned curly.  Izzy loves it left to curl on its own but oh not me!!!  I will get Colin to take a picture of it and you will see why!  So next Friday I will beat my demons and go and be sorted out, colour done and hair cut!  That will be the end of it for around another six months if I can get away with it - oh such torture!  

I do not generally do evening outings, always my best in the morning.  We did make an exception last week though and went to our favourite Indian Restaurant with our friend Michael to discuss our holiday coming up in Javea.  It was so nice to relax and think about this holiday ahead of us later in the year.  We all reminisced about when we lived there, the things we did, the places we saw and the lovely places we ate in.  Michael already has a list of where he wants to go and where he wants to eat!  For me though just being back in the place we loved, the place we made our home will be delightful and of course seeing all our friends.  Some have already put our dates in their calendars so I know we will have a great time.  Christine my lovely family from way back to the 15th century with whom I did a lot of my family tree research will be around then, no holiday booked so I know we will both be delighted to catch up, plus she loves Colin and he her so happy times ahead.  

Jayne Venables and her lovely hubby are on the high seas right now enjoying a cruise.  She is on the ship we will be going on in a few weeks and just about the same venues so it sending us daily updates.  i must say it all looks amazing and is whetting my appetite even more to be able to go on ours.  Izzy gets ever more excited and is planning wha to take with her, one thing is the  cardigan that she took from her mom as she says is smells of her moms perfume.  She will facetime her mom whenever we are in port and have the chance so all will be good.   

We are also hoping to get two or three weeks holiday away in the motor home.  It really is a home from home and the comfort it gives us is just amazing. I love to go away in it and know that if necessary I need not even step out of the door, all is to hand fo me and I feel safe and protected in it. We hope to go down to Wales or up to Scotland. We need to sort it out between all our other dates in our diaries but one holiday we really want to manage to do before the end of the year sets in.  

Royal Ascot

This date is in our calendar yearly.  No we do not go, it would not interest us at all but my daughter and her lovely partner Chris do go and join all the fun with Chris's dad.  They generally have a box so do things very upmarket, something I would hate!  My daughter is so different to me in that respect, she likes her hair done, nails, make up etc. where she got that from is beyond me, likely my mom who was always beautiful dressed and turned out. This means that we can have Izzy to stay with us for a few days.  We all enjoy this time and I love that at night there is no  rush to get her home we can take out time with everything we do.  She played Hallelujah for me the other night on the piano and I must say it was rather good so looking forward to hearing it again. (Tess she is now using two hands so is getting on pretty well.) We will have her for three days and though we will be exhausted at the end of it once again such memories will be made.  

Why?

I always admit to being no computer buff, why even this blog, though all typed by me will be posted by Colin as I have never mastered the art of doing it.  So I have a question to ask you buffs.  Why do people follow your page but not friend you?  I had notification the other day that a friend from long ago, sadly we lost touch has now followed me on facebook.  Why did she not just friend me, send me a message etc.  is it that she just wants to see what I am up to with me being able to see what she is up to.  is it a case of hoping to maybe see bad things about me (we did have a falling out years ago but  thought that was resolved)  So if she is reading this (and I assume she will as she followed me) please friend me if you want to do so.  it would be lovely to be in touch.  I do know some follow for the wrong reasons.  I have had some who messaged me saying they want me to be their friend though they live in places I have never even heard of. (these are all men ) They get upset when I do not respond and keep coming back so I just block them.   I am  thinking therefore to change the status on my page to friends instead of public.  So if you are able please friend me if you have not already done so.  The reason I have left it public for so long is because of somebody who means so much to me who does not friend me but I know reads my blogs.  Not sure how we can get round this but he is savvy enough I hope to sort something out.  (T - you have not seen the new house yet, please call around as we would both be delighted to see you again). 

The end is in sight

At last our new hall is almost ready so  will be able to attend my own church instead of one a mile or two away.  This also means the end of baking weekly for all the unpaid volunteers who have restored it and the end to all the washing I have been doing weekly.  Colin says on Mondays our house looks like a chinese laundry with around 15 shirts, bedding and towels from a couple whose washing  I do.  Small price to pay for all they are doing for us all but yes I am still relieved the end is in sight.  Today I will hand over two dozen savoury pies I have baked for the last time for the team to enjoy on Monday morning.   Tomorrow I will receive my last load of washing so I am hoping this weather gives us a break and gives me dry but windy weather so it can be dried outside.  Then hopefully all will be back to normal and we can enjoy our newly refurbished hall. 

Right so apart from needing Colin, who is on a bike ride now there is nothing more to say for this blog but I do need him to take a pic of my hair which is unbelievable right now.  

I will love and leave you all now.  Thank you once again for taking the time to read my ramblings and to like the page.  I love comments so if you can be bothered then please leave one.  

Keep smiling!!!!!

Carole xxxxx

I did it.  The weather was kind enough for me to go out and plant.  Among other things I have planted antirhinums, phlox, campanula, lupins `and a whole variety of others  Sill one bed to go so will go out and buy more.  Then the very last will be the climbing wall so a time to go before then.  Now I hope for sunshine for them and the hope that I did no kill them all!.  Now time for a bath!







Monday, 3 June 2019

OWING SO MUCH TO SO MANY

Actually managing busy times

Colin had wanted to go and see Kathryn Jenkins at the Barbican in York for a while so though reluctantly (not generally too keen ) I went with him.  We stayed in a hotel at Gillygate, just a short stroll to the Barbican and also to the centre of York.  The weather was kind to us so we left home early determined to stop at the shopping mall on the way in.  I did not buy too much but as we have two holidays coming up I knew I wanted to refresh my wardrobe.  My purse being a bit lighter after this stop we went to have a very pleasant lunch and then onward to the Gillygate and our room.  Once we were settled in we headed for a stroll around York.  Fortunately for me it was a good day considering I have ph and managed it all quite well.  The weather was really lovely and I was enjoying just being alive.  It still surprises me from time to time that I am still here to see and do so much.

The concert I was not looking forward to turned out to be truly fabulous.  For me the highlight was not Kathryn Jenkins, though she was very good and also very glamorous in her very posh frocks.  No it was the Manchester Concert Orchestra that I found truly mind blowing.  The way they all worked together to produce the most incredible music I had heard in a long time was just something else.  No wonder when they all played it almost brought the house down.  

Kathryn turned out to be a very nice, very friendly and very funny young lady.  She talked about her two children and appeared to be a real home body despite having to travel worldwide to deliver her concerts.  Half way through the show she said she wanted to have some fun.. She asked if we would write down any questions to her, even rude ones and she would do her best to answer them after the break.  I wanted Colin to ask her if, as happens often with young groupies where the young girls throw their underwear onto the stage she would be open to having Colin's Calvin Kleins thrown at her. He declined to allow me to put it to her but there were some very saucy questions.  After each question she answered she blew a kiss to the one who wrote it.  I think maybe Colin might have wished he had sent her the question just for the kiss.  He can be a right party pooper can my husband.  

We returned back to our hotel very tired but very happy too.  The following morning we headed back to the centre of York to a fabulous music shop that sells every musical piece of equipment one can imagine,  He bought sone music for his own piano and some cards to help Izzy along with remembering quickly all the notes just by playing fun games.  By this time I was truly shattered and so it was time to head home.   Though we had only been away overnight we had crammed so much into our time that it felt to be a lot longer.  I know we keep promising ourselves more time out but the garden preparation does take a lot out of our spare time and we so want it finished this year.  

My A Team

Well those of you know with pah how our levels in our lungs, or pressures can go up and down in an instant.  Because of this it does dictate how we get on throughout the day.  Pressures up, exercise and tolerance to doing hardly anything is zero.  Then mere thought of getting out and about is too much out of our spectrum when we are at this stage.  Once the pressures drop however life can be so different.  Due to my being on the cardiomems machine I know how pressures change and the extremes of it.   So I was rather concerned as I was not doing much in the way of walking as far as I would have liked, but hey that is the nature of the beast.  Right now though there is a turn around.  I woke up last week feeling really well.  The time was 5.10 in the morning and I wanted to get up and begin the day and so I did. Leaving Colin asleep I got up and went out to collect snails from the garden, they love our foliage and come out in huge numbers, though I am getting these down as I collect them daily and dispose of them. I had plenty of plants that needed to be planted.  Colin does the big ones and I manage the small ones as they do not require too much effort to get them into the ground.  

I so enjoyed being up and out so early. Once Colin surfaced we decided to lay down the membrane for the beds ready for when we lay the bark on top. This took more time than we had thought it would but fortunately my ph stayed  good and  think I was a great asset to getting the job finished.  We now have four beds completed and they do look good if I say so myself. Steps need to be laid now to go from the lower lawn to the top and then we can lay the top soil ready for the turf.  I can't wait to see the lawn down.

Anyway once finished we had promised to see if I could manage a walk.  I always prefer to walk rather than the mobility scooter but sometimes I do not have much option.  Anyway legs it was and we went to a moor about one and a half miles from us.  Our house looks over it.  The weather was fine and the moor was glorious.  Full of bilberry bushes, far superior to any blueberry in my eye we were saying how we would get all the family together to pick them later in the year.  I felt on top of the world and so very grateful to my A Team that I was able to see the moors, walk them and enjoy such precious times with my husband and family.  Filled with emotion I wrote a quick message to one of my specialists thanking them all that I was able to do this almost nine years on from my terrible diagnosis.  I sent a pic of me on Norland Moor too.  I was feeling jubilant and so very very grateful to all who had worked so hard for myself and all the others inflicted with this deadly disease.  We owe so many so much.  He responded saying I was doing all the hard work but really we know this is not true. Without the dedication of all from researchers, all the way through to us getting our meds I would have been dead and gone years ago. I am so very fortunate to have pah now and not fifteen years ago when the outcome may have been so very different. Well no may about it, I know my pulmonary artery was ready to sever so I did not have long left.  Yes I am certainly grateful to all who have anything to do with ph.  What really surprised me though was that Alex then read my pressures from the CardioMEMS that morning. He wrote to tell me that my pressures had been at a staggeringly low 28 that day. True never before or since as the following day it quickly went back up but so fascinating to get such an insight into our pressures like this. It makes us realise just how quickly we change. 

Holiday

School holidays are here again for two weeks.  Of course we have Izzy but Colin also takes her away in the motor home for a few days too.  This gives me time to see my friends and do my own thing.  This year he is taking her to Flamingo Land.  I used to take mine here when they were small.  I know she has never been so feel sure she will just love it.  Izzy makes me smile as she asks me every day if I am having a fat day or a thin one.  Now I never have really thin ones, I weigh just over nine stone so thin I am not but what she means by this is this.  If my pressures are up in my lungs then generally, though not always I have more water retention so hence it is a fat day as my belly needs to get rid of all this.  My kidneys are sluggish due to lack of oxygen so everything is slower to work.   Now on a thin day my pressures are lower so my water retention is not too bad.  So this is just how she understands how much I can deal with from day to day.

This however I feel has caused a strain on some of our neighbours who live close by.  Izzy and their children played well, running from garden to garden without a care in the world.  We had no issue with them coming in and out of our house to collect games etc as long as their parents approved.   All went well until one morning when I was talking to Colin just as the neighbour was passing on the road.  I remarked that at least I was not fat, meaning it meant I could get on with the jobs that needed to be done.  Now as soon as I said it I knew what I had done  Though I had never talked to this particular lady,- she always seemed reluctant to engage in any talk - I knew she must have thought I was making reference to her! I would never make remarks such as his , never make a personal remark at all but I just knew........  What could I do.  I could not run after her and explain my remark, I just had to let it stay. However not so long after the children were no longer allowed in our garden and indeed not even allowed to play with Izzy.  I was so gutted as they are lovely children, well mannered and nice to talk to.  Izzy enjoyed so much having friends to play with and all was gone by one throw away remark not meant for her at all. This week has been the beginning of a thaw where one of the children can go into Izzy's garden to play.  I hope this continues. My guilt is still huge.  

Javea again

So we booked another holliday in Javea for later in the year.  This time one of our friends, actually the one who introduced us is coming with us.  He spent many holidays in Javea when we lived  there and had missed it so much we decided to see if he wanted to join us.  Well there was no need to think he would take some persuading, he didn't at all and now is counting the days until we go. We are heading back to the same apartment we rented last time we went as it was so perfectly placed. I know we will still go up to see the Villa we had built as we have friends live close by and walk in the woods again down to the golf course. Already so many plans I just hope nothing happens to spoil them. As my consultant said take as many holidays as you can, make as many memories as you are able and so we intend to do just that. 

And another .....

We did another walk, this time at Midgley and boy what a lovely time we had.  The history of this moor fascinated me and the names,  Churnmilk Joan, Millers Grave etc were all too tempting to leave alone.     The milkmaid was reputed to have frozen to death on the moor so the huge stone was placed there in memory of her. Walkers throw coins onto the top of the 7 foot stone, no idea why but it seems to be done by many.   The Millers Grave is reputed to be the grave of a miller who committed suicide and the church would not allow his body to lay in their cemetery so he was laid to rest on the moors.  Not sure as to the accuracy of these tales but if you are interested then google Midgley Moor where there are a lot of interesting facts and info.  There are shooting butts to walk around,  not sure if they are still used come the glorious 12th August plus huge monoliths to discover.  Plenty of cairns are to be seen and I always add my stone to each one as I pass.  

The weather is a perfect drying day so I am gong to go and hang out the washing.  I don't know why i get so much satisfaction out of such a small task but there it is.  After that we need to go shopping so that the intrepid travellers have all that they need.  Izzy is beyond excited and is happy to do any chore we give her so anxious is she to get them all done so the motor hoe can be packed up and ready to go.  

Whilst they are away I will spend a day with my son and explain to him how to use a carpet cleaner U am taking over.  He will do the hard work and I will do the explaining.  Then hopefully we shall go out and have a little lunch together.  It is always nice to catch up with him and spend some quality time.  

I also need to make up Izzy a goody bag today.  She always takes one with her.  With tiny surprises in it this is a big part of her going away.  It might just be a piece of fruit and a drink plus a few craft things to enjoy doing once they are ensconced.  I do not spend much but the pleasure is in the anticipation.  

Right I must love you and leave you all.  Izzy is playing the piano, rather well I must say as I type this.  She has come on so well with her tuition at school and with her granddad helping her when she gets over to ours.  She does do some practicing on her own piano too with her mom.  Maybe we might have a famous pianist on our hands in he future - LOL .

Take care all of you, sorry this blog was so long in the making but I will try to do better.  

Ahh I think I hear something outside.  With any luck it may be our bark being delivered.  

Love to all.

Carole xxxxx


Tuesday, 7 May 2019

YOU SMASHED IT AGAIN PHA UK WELL DONE

PHA UK Conference

This was a very special conference fo us as it marked 20 years of our PHA UK setting up.  It works beautifully well with its dedicated team who are determined to do all that they can to make our lives living with such a devastating disease run as smoothly as possible.  Beginning with a small group of people sitting around a table, our own Ian Armstrong being one of the few the idea was born on how to move forward and this amazing group rose from the ground to become the fabulous group it is today.

All who were attending had waited in such anticipation as apart from the very essential conference where we all learn so much there is also the brilliant social side where we meet old and new friends.  I myself had been longing to meet my ph facebook friend George Gaskin and his wife Nicola. Though we had talked many times on facebook I really wanted to talk to him in person. He had become pretty special to me over the years as we shared our experiences. I felt I knew him and would enjoy his company. I was not disappointed as both George and his beautiful wife were as friendly and as easy to be around as I had thought. There are too many people to name on here but you all know who you are and I want to thank you from the bottom of my heart for making the weekend such a special one, probably my best one yet.

The talks were very informative as usual and I feel sure we all brought away from them something we had not known before, yes even us old timers.  I did not attend the afternoon session as the talks were about transplant, not an option for me and CTEPH, again not my form of ph but the one in the morning talked, among other things of the importance of exercise. We were asked right at the start to press the button on particular numbers to say if we exercised regularly, very little, never etc.  The number of patients who did not exercise very much was quite alarming but at the end of the talks I was so pleased to see that the numbers had risen significantly when we were asked if they would now exercise and that there were only 2 percent who said they would still not exercise.  Such a great result.  I hope that all do take it on board as it can potentially prolong lives and certainly make us feel fitter.  We were told not to worry about being breathless with exercise, that we do not die from breathlessness which I hope encouraged those suffering with ph to try to do more.  

Whilst the afternoon talks about organ donation and CTEPH were going on we both decided to join Tess and Terry in their music workshop.  We had so much fun and though I had no idea quite what to do with this instrument I did have fun trying.  We all had a singalong too which is always good for those of us suffering with bad lungs, as indeed it is for anyone.  

Once again we were all asked to talk to our families about organ donation.  I do not mean will they donate, though that of course is always in our minds but to talk to their family about their wishes on donation. Sadly in the UK even though the potential donor carries a card wishing to donate on their death often the families intercede and do not allow their loved ones last wishes to take place!  This shocked me as I believed my donor card would be my word and not that of my family.  So everyone who carried a donor card needs to discuss with their family their own personal wishes and ask them that if the time ever came when they were in a position to donate their family allows their last wish to be carried out.  I hope people take this on board and carry it through. 

The social side of these conferences are always great, we have a lot of fun and there is always a lot of catching up to do.  I must confess that all thought of exercise went out of my head as I knew that my time with all these amazing people, all suffering from this awful illness would soon come to an end for another year as we all went our separate ways.  I did not feel too much guilt though as these times are really special and cement our friendships even more.  It was hard talking to a young lady suffering with this condition as she is on the waiting list for new lungs but when offered the lungs of a smoker she declined. ( I do understand that ) but the worry for her is when is the time right to accept even lungs such as these - leave it too long and you are not well enough for transplant - take abused lungs and do you swap one set of problems for another.  (Yes we do know about the cleaning of lungs but the concern is still there)  My heart went out to her with such a dilemma and I wish so much the cure would arrive before this decision time goes on too much longer.

Another one of my friends is on the iv line.  I know well how hard this is as I too was on it for some time before I could be deemed safe to transition over to oral.  With England at last now being given the news that we can now join our neighbours Scotland and Wales in being allowed Selexipag he asked the question could he come off his line and take the selexipag instead.  As the drug is pretty similar the hope was strong that the answer could be yes for all my friends suffering the lines.  Sadly the answer was no.  As his doctor said if he could swap the line for a tablet he would give all his patients the selexipag but the simple truth is that nothing is as effective as holding back the progression and indeed helping to rest our hearts than the iv lines. One day though - one day - we all live in hopes. 

One thing I found particularly heart warming was a small conversation I had with the the fiancĂ© of Sean, he runs the PH UK group.  She was saying how he arrived home one day  and she knew by his face something wonderful had happened. He told her that we had been allowed selexipag after a huge fight for our right to it and they both jumped around the room with joy. I don't know many people who care so much about us fighting a disease they do not suffer from. What a team we have, we are so fortunate. 

Holiday

Before the conference I had had a few days on the coast in our motor home. I decided to go into Scarborough on the bus and I was happy just sitting watching the world go by. I heard a noise and looked to the side of me and a little to the front to see that the gentleman sitting across the aisle had dropped his wallet.  Thinking I was doing a good deed I got up and went across to touch his shoulder and told him.  The response was not what I had wished for. With a vicious swing of his arm he growled "GO AWAY" and pushed me across the bus.  I was fortunate to land on a padded part of the bus where parents with prams stand. I was shocked though and so were the people on the bus. The bus driver without ado stopped and told him to get off, that he would not tolerate bad behaviour.  However when I looked at the guy it became obvious he had some mental health issues so I asked the driver to let him stay.  The busses were every one and a half hours, what could happen to him in that time. Reluctantly he allowed him to remain with the proviso that he did not cause any more trouble.  He behaved!

One day I went for a walk on the beach.  It was a good day for my lungs, we know how our days and even hours can change.  The sun was beating down, the gulls were circling and life felt so good.  The beach had a smattering of people who were walking their dogs and a few children were playing with the pebbles.  It was an amazing feeling that I felt so well, really well.  The waves kissed my boots as  I walked along the shoreline and I could have cried with the sheer joy of  being alive after the last almost nine years since diagnosis. I wanted to ring my specialists and tell them just how grateful I was for all their hard work and dedication given to us all who suffered this. These days, these times are so special and the memory of that walk with my lungs actually feeling to fill with air will remain with me forever.  

Back to reality

This is my first day back from the conference and I am exhausted.  I know there is dead heading to be done in the side gardens, the only ones done so far,  I know there is washing to be hung out in the hope that the slight wind dries it but the sheer effort it would take is just too much.   Colin is outside tilling our top garden ready to order 10 tons of top soil to be delivered ready for the turf to be laid.  Our landscape gardener is calling in tomorrow with the plans for the new garden so we want it ready for him to see where we are up to.  If we can get him to turf it soon at least it will look neat and stop the weeds from growing.  I know that the top soil needs heeling in and we have to wait two weeks then before turf is laid but I just so want to see it looking neater than it does now.  Still we cannot hurry the process.  Once the turf is laid I will try to be patient until October when all the walls and beds can be built.  I know Tim the gardener said it would be the soonest he could get around to our garden.    

On arriving home I saw I had a letter from the DVLA re my fit to drive.  I felt sure it must be the one with the absolute decision as the last one I received said they were waiting for my specialist hospital to complete for the second time the letter they had sent them asking their" opinion on my fit to drive. The first one had not been completed fully.  Anyway sadly not, it was to inform me that they were sill waiting for the letter back from Sheffield and so the wait continues.  

We have a friend arriving next week to stay with us for a few days.  We met both herself and her husband when we lived in Spain.  Sadly he died just weeks after their return to the UK.  We have much to catch up on so I need to check the bedroom she will be using is ready and tidy.  Izzy does go in it and so - We shall see.   

Izzy

We collected her passport from her home yesterday as our cruise comes ever closer.  We need to send off all our passport details now and copies of our insurance which they really DO check to make sure all passengers are fully insured.  I did ring her up when we got home to tell her we were back and though we got an excited squeal when I said we were home she did follow up this with "well it is raining" so clearly she was up to more exciting things than visiting with the grandparents.  On Sunday she will be walking the highest of the 3 peaks along with other members of the family ranging in ages from 5 to 70.  This is to gear her up for her long awaited walk up Snowdon later in the year.  It was lovely that all the family on both sides want to do this together, despite many of them having done it umpteen times before.  

Gentleman Jack

At last the long awaited production will begin on the 19th May on BBC 2.  I am looking forward to this as Shibden Hall where this story begins is in my home town.  Its is a place we visit often as it lies only two miles away from us and has beautiful grounds to explore.  She was an extraordinary woman and I for one will be taping it as soon as I am able.

Its no good, I just have to move.  Aside from all the other things that need doing I have remembered I need to make 24 savoury mini pies for my church!  Though I could do without this today I need to get on with them.  

So all for now for this blog.  I really will try to hang out the washing!!!

Much love to all

Carole xxxx







Tuesday, 9 April 2019

THERE WERE TEARS - but of joy.

So the verdict came in - no cancer of the mouth.  What a time it had been though and nothing has changed re the state of my mouth at least it is nothing onerous thank goodness.  The specialist was so lovely.  Of course he had to take my history of ailments so there they were IPAH' Severe Spondylitis of the spine' Potential bowel cancer polys so removed yearly.  All of them serious conditions.  I cope ok ish with them all.  I try to live my life as normal as I can but this was the final straw.  Could I cope with yet another disease with the potential to wipe me out!

Like most of us I read Dr Google after my doctor showed her concerns. Yes my tongue looked exactly like two of the ones I googled.  Of course my immune system is low so I could see easily see that a body already already harbouring cancer casing little gremlins could have them shift up from my bowel to my tongue and grow there peacefully away until it was too late.  Oh my how the mind works and this time my positivity I try show and live by became a little chipped.  I knew that one serious deadly illness did not rule out another one so yes. there were fears.

As  I sat in the chair whilst my specialist was looking up the results of a swab that had been taken a few days before I confess now I was scared. He checked over my mouth and tongue very carefully and then given he read the swab results and checked once again he sat down and calmly said "right now lets talk out your mouth cancer" Of course my already overworked heart jumped so high into my throat I thought I would be able to spit it out. He calmly said " I am happy to tell you that you do not have cancer and am so pleased for you.  With all that is going on with your health it would be awful if you had to face that too." I looked at him for a few seconds to make sure that what he had said was real,, it was not me imagining it, no he actually said that.  So the tears of joy came and I could see that he too was a little overcome and so pleased to give me his verdict. We left his office so happy I can tell you!!!

I was stunned by all the messages of goodwill and support for me at this awful time.  It just showed me the measure of care that we have for each other, that we are united in wishing the best for each and every one of us.  I was determined to get hone and post that all was ok.  However once I did get home I could do NOTHING,  My body just packed up.  Everything was too heavy, too hard too above me.  I went to bed and shut out the world.  I think that I had tried to be as positive as I could, carrying on and trying not to let it get to me that my body just went into shut down mode, survival mode that we all have. 

Then a new day dawned, one that gave me hope for the future.  When  I then got on my cardioMEMS machine it showed what had been happening to my body whilst all of this was being dealt with.   Janet who reads them every day rang me to ask how I was as the machine  had given a high reading of the pressures in my lungs. She was wondering if she should talk to Alex who sees overall how things are going with me.  Between us we decided not to as I knew that this is what happens with stress with me, so we really need to try to keep a lid on becoming too stressed.  Easier said than done.  The following day  was back to my normality so all was left well alone.  It is so good to know though that if these pressures showed a constant rising then they would check me out and change or tweak my medicines.  I do not have to wait for hospital appointments or right heart caths.  I am being given a watch that monitors lots of things on my next visit which is the 15th of this month.  Between us we will have all bases covered, I am truly blessed.  

OVERWORK

As the weather is getting nice and Colin had worked incredibly hard making the side garden good for plants we decided to go off and buy plenty.  I already had some rescue ones and a magnolia tree and blueberry bush but we needed so much more. We needed colour to go between the grasses had bought.  Top of the list though were self propagating fruit trees.  The nursery we went to only had one apple one so we took it along with mountains of other plants. We spent a whole afternoon planting them and still have a few that will go up by the side of the steps Colin made out of the trees we took down to build the house.  We have still room for more but need to remember that we want different seasons. No point in everything in bloom at the same time and I was so pleased we did not buy more.  I had forgotten how hard it was to place plants in the correct position, the type of peat or mulch they needed.  We went through buckets of liquid gro more in the hope it does what it says on the tin, makes them double in size.  Now we sit back and hope!!!! My ex employer, now a really good fiend will be coming up to see our efforts over Easter and I feel sure if we have done something wrong she will happily point it out to us so that we can move them before they get too settled.

Aldi were selling a fire pit so we went off to buy one, along with canes etc.  Our idea is to have a sitting area just outside the front/back door.  (We can't think what to call it as technically it is the back door but the views are here, our garden is here so to me that is the front, won't go on though as an augment can follow by better half. Anyway he is a whizz at using his hands to make things and transform things so this small area will have our lovely shrubbery garden with fruit trees at one side whilst the rest will be taken over to us for pleasure. Though we have the main terrace in front of the lounge this small terrace he will build will house the fire pit with a grill on top for ease of making  a simple meal.  We will then have options as to where to sit depending on the sun.  I will also have my vegetable patch here so can sit and watch them hopefully grow. A small table and two chairs will sit nicely here whilst the bigger one will remain on our terrace.  All should be well if we have the stamina to get it all done!  Then will begin the task of the bigger garden area and something we are still planning along with the other side of the house. For such a small plot we have quite a lot of outside space which has surprised us and everyone else a great deal.  When things move on I will take pictures but here is one of steps and a banking put together beautifully by Colin from just a mound of earth and stones. 

GETAWAY

We really need to have a few days off so we have decided it will be very soon as Lucy, who takes care of our cleaning has friends due over.  She will stay here with her hubby and friends and take care of watering our new plants whilst we go away. Colin is doing a three day bike ride so I aim to go with him for the first stage and meet him at the last. Typically something always upsets the apple cart and this time it is a family matter we really MUST sort out before we go away.  My stress levels run high with this one and I am so upset for my son with all he is facing.  I cannot share it here as personal to him but as a mother we never stop worrying about our children. Though he can sill be a stroppy lad at times this is something as a family we are trying to deal with where we can and support where we cannot. for him. My heart breaks but all we can do is be there for him and offer support and love whilst he faces what lies ahead.  I know he will come through it but there are hard and scary times to be dealt with first.

ALEXA!!!! 

Get your act together Alexa.  Though she often comes back to me with things nothing to do about what I have asked her the reason is that I do not word the questions correctly. Colin always says please and thank you to her so he had asked her to set a timer for the meal he was cooking.  He sometimes without thinking says muchas gracious and this time, when he said the words she responded " I do not know how much grass costs at this time"  The three of us laughed as we could see how muchas gracious could be asking the question as to how much grass costs!  She came out with another one later but cannot remember it.

PATRICIA NELSON

I have had many people asking if I knew anything about Patricia as she is not responding to posts.  I can tell you she has been readmitted to hospital, Shrewsbury this time and she is suffering with a urinary infection.  These can be really bad and lay us very low so she is at least getting good care for this. She is hoping to be able to correspond later as her health improves.

BREXIT

How I tire of this.  Regardless of how any of you that vote did so the politicians ought to be ashamed of themselves.  No wonder we are a laughing stock of the world.  Fighting like kids, laughing when they see put down of other politicians remarks etc.  John Bercow is a rubbish speaker and needs to be moved out.  He is so on one side and it should not be allowed.  He promised to be impartial but he does not even know what impartial stands for.  I give up.  No wonder Europe is turning to him for light relief. he makes a laughing stock of all that was good in British Politics today.


Ending on a happier note.  Though Timmy the rabbit has gone and will no more frolic in the garden with Bluebell these two house cats still make the family very happy.  One of them in particular is very fond of Colin. She runs to him when he arrives and sits by his side looking up at him with a very loving expression on her face.

Danielle said 'oh that is a surprise as she is generally the more aloof one - I believe he has fallen in love with you!'  I hope he does not get any ideas about us having a cat -  we have enough to be going on with right now.


Leaving on a happier note remember for those of you in the UK our conference is just around the corner.!!!!  We are so excited and looking forward to spending time together once again.

OK I will leave you now and look forward to any comments, likes etc.

Warm love to each and every one of you.

Carole xxx

Sunday, 31 March 2019

A NEW CANCER CLINIC - URGENT

Could I really have mouth cancer too!  

Like most of us taking particular medicines I have suffered with oral thrush. Sadly this has gone on way too long and despite my doctors trying various methods of getting rid of it the problem still persists. Now I did not realise quite how dangerous this could be, that it could be a sign of mouth cancer.  I do now for sure.

On seeing my doctor for the fifth time with this issue she AT LAST decided to take a swab and send it off to be analysed, as well as making me an urgent appointment for the oral cancer clinic.  I was shocked as to how quickly things moved. Saw doctor on Monday and my appointment is for lunch time on Friday!  I wish they had moved as quickly over the years I told them I knew my problem was NOT asthma but something else - sadly too it took a specialist in  Spain to diagnose my IPAH. Anyway Friday is not too far away and we will see how I go.  Just in case they blame it on the inhalers I take I have missed them out totally for the last two months. I have tried their medicines, tried my own, baking powder and lemon, plus sea salt, cordosyl, all to no avail. My mouth looks a mess with a large odd shaped patch to the right of my tongue.  I do not drink, smoke or take drugs other than those prescribed by my doctors so what the trouble is we do not know. I pray it is not cancer but at least if it is I will go in and fight it with all I have got.  Just feeling a little shell shocked right now.

Bye bye Aunty Audrey

Yes as many of you know I attended two funerals in two days.  The first was supposedly for my Aunty and this should have been the last one.  Sadly my silly brain told me that the funeral was a day earlier than it was.  So as I said we ended up at one to talk about the life of somebody called Shirley.  Never heard of her but I know a lot about her now.  I know she died from blood cancer, that she smoked a lot, drank a lot and worked in a chippy as well as a local pub.  She was a good friend to many and was always around to lend a helping hand. She loved her pasties and also karaoke!  At the end of the funeral we were invited back to partake of a funeral tea.  Obviously we did not do this.  We moved so quickly when we were allowed out and shuffled off to our car to disappear into the melee of those leaving.  

To anyone wondering who we were it would have seemed we were very deep in grief as I have to say, and I am sorry about this but I laughed so much when I got to the car I was dabbing my eyes they watered so much, anyone seeing me would have been sure that my grief was deep.  Now  am not making fun of Shirley, not at all, I am making fun of ME and my stupidity. Colin was not amused at all. The tale did go down well the following day though when we did it all again for my lovely Aunty Audreys' funeral and it did cause quite a few peals of laughter.  Her funeral was lovely and was well attended by her loving family. Sadly she was the last of the sisters and brother on my moms side so that era has come to an end.

Fascinating

As you know I  have been fitted with a device in my pulmonary artery that registers the rises and falls of my lungs .  It is working well and I was delighted, - well maybe not quite the correct word but rather pleased to see it really does show well our pressures.  I had a terrible day on Thursday.  A true ph day though I did all I could until 10.00 am when I just had to go to bed - how I hate those days - and I just KNEW that my pressures were up. Sure enough Alex rang me to say that they had risen on the Thursday so it does prove how our pressures are up and down with no apparent reason.

We talked to Alex and asked if there would be any merit in my taking my pressures at different times.  Say one month, first thing, one month lunchtime and one moth evening so we could also see if pressures rose much from morning through to evening.  He said there could be some merit in that but for now we would see the trends as I take them first thing.  He asked if I had a step counter.  Yes I do but mine is one that I only wear when I leave the house to actually walk steps.  I see no merit in having one on all day that counts each step to the loo, or making a cup of tea.  As my specialist once said our hearts are not really working much doing this so it rarely counts.  My hubby, who wears one all the time, a good one supposedly has on many occasions had two thousand on the clock when he wakes up.  Driving over to Whitby he clocked up a few thousand just sitting in his car seat.  I also heard of a lady who clocked up 17000 sitting down and knitting!  Anyway he wants me to have one so will pick the one he wants me to have and  shall dutifully wear it.  I will still rely on my trusty hip one for exact walking steps though.  

Garden

At last the time has come to try to get our earthy moulds to resemble a garden.  Colin is working diligently using a machine that throws out stones and leaves the earth nice and sifted.  For parts of the garden I want to use some of the soil with the stones in, such as the rockery.  I have been heading off to our local nursery and buying many plants and shrubs, much to his annoyance.  He is right, we are not ready for them yet but my enthusiasm is great and I just could not resist them.  So now I have plants growing in big pots, some just nestling against our walls sitting in trays of water, such a task now to make sure they do not die before I can plant them out!  My seed potatoes are "chitting" as I type this so should be able to plant them out in the not too distant future.  I aim to plant a Victoria plum tree as it is self propagating and also they are my most favourite plums of all time. Izzy has been promised a cherry tree and so I also want to plant an apple tree.  This too must be self propagating.  Does anyone know of a really nice english eating apple that does not require another tree close by.  I know cox is one but we are not so keen on those, an odd one yes but not a tree full!! 
Colin is also making a raised bed to try to keep away the slugs.  I want to grow runner beans and other veg.  Let's hope all turns out well and that this all comes to fruition.

Holiday  Cruise

We managed to get our insurance for this cruise at a very reasonable sum for the three of us.  I never omit to tell all when talking to their operators as one slip up could mean they do not pay out.  So we are insured to go and now just waiting for our "slot" on the ship. Izzy is very excited and she is not the only one. We LOVE cruising and as this one does not mean any flying it is an added bonus particularly as we now have a large suitcase to take with us containing the computer pillow used so that my pressures can be monitored even on holiday.  Thank goodness no flying.  I would not trust it in the hold as it must be very valuable and also not belonging to me makes it even more precious.  

Before then though we aim to get off for a few days in our motor home, how we LOVE these break aways. We dare not book anything until after Friday when we see what the cancer specialist has to say about my mouth. Honestly what with the pre cancerous polyps, and now this it seems like something is out to get me.    

Izzy

We are to have Izzy Saturday and overnight so decided to take her to get her hair trimmed, with her moms agreement obviously.  I also wan to buy her some new school shoes.  After that we are meeting up with Colins' son and his family to spend some precious time together. We aim to go into Hebden Bridge as our grandson wants to try the BEST scones ever that are sold here. Served with clotted cream and jam he is really keen! So we shall have a very jolly time and I dare say I too shall just have to have a scone. It is a real treat and not something we do every day so  don't feel guilty.  We never know what is around the corner for any of us so take enjoyment where you can, when you can, that is my motto.   

Right must go, we have a man coming to see about a little painting that needs doing outside.  The huge posts, metal that hold up our front porch and our back terrace need to be painted for the first time and we want somebody who will really do a good ob, hate he thought of having to redo them too soon. So Colin is cooking tea which we will aim to get eaten before this guy arrives.  So I love you and leave you as the saint goes.

Thanks for reading my rambles.  I will let you know what the specialist says about my tongue as soon as I have news myself.  I am really hoping is is just a precautionary note and all will be well.

Please comment if you wish - i love them or at least click like to let me know you have read this blog.

Warm love to each of you.

Carole xxx