Covid Strikes Again

Here we go again

Once more my colonoscopy has been delayed,  I was expecting a call for my pre op this morning and sure enough the said call arrived,  The conversation did not go the way I expected it though, in fact far from it.  With a cheery voice the lady on the other end on the phone said “ I was going to ring you about your pre op but yippee you don’t need one”. When I asked why I was told my colonoscopy had been cancelled now for the fourth time!  Another year to wait.  Now I know they are not the most pleasant of procedures but I am used to them, take no sedation and am quite an easy patient. Well another year of worry ahead for me.  Let’s just hope that they do not cancel this one in a years time,  In the meantime I pray that I do not end up with cancer as a casualty of COVID and all restrictions on procedures.  There was a reason I was told I must have one yearly so why it has changed is beyond me.  Next year let’s hope there are no repercussions from this.  

Soft grandad 

Izzy had a scooter here from when she was about four years old,  She is now ten and she has had her big scooter for years now too,  So many times we have looked at her baby scooter and so many times wanted to take it to a charity shop,  Each time we suggest it we are told emphatically by Izzy “ NO, I love my scooter, “ so there it sits in the garage, taking up precious space close to my mobility scooter,  On a tip run today Colin said he had put the scooter in the car and would place it where others can forage at the tip and take if they so wish.  Job done I assumed until he came home a few minutes ago.  When I asked if the scooter was gone I was shocked to be told no,  Puzzled I asked why and was told that he picked it up out of the boot but just could not bear to see it go himself!  He has decided to make some sort of feature of it in our garden, quite what I have no idea but what a soft grandad he is,  He said he could not stand to see her face when she realised it had gone plus the many memories of her scooting on it.  Let’s hope this is not a pattern and we end up with numerous bikes, scooters etc.  It would be different if it was a dolls house.  We could add to it and make it a miniature village with all her LOL dolls living in it!  

Grassington

Yes our holiday break as a family came off and it was a huge success for most, sadly not for me as I was clearly not well in myself and just wanted to be home.  So with a heavy heart on day three of the break, first thing in the morning I headed home leaving the family to continue on enjoying their time.  Colin took them all to Linton Falls, and to climb and crawl through a cave.  Social distancing went well even in the caves as they were well set up for it.  No way could I have coped with either days activities and though our motor home is so cosy to me it made sense to get home whilst my blood pressure was not too bad rather than wait and it may then be way too low to risk driving,  I was only home alone three days when it was the end of their break away.  All had a great time and can’t wait to do it again,  Of course now COVID lockdown is here again so I doubt anything will happen until next year for away days.  

I could scream

Our dishwasher broke, not quite two years old.  Repair man came out and said we needed a new salt container and another repair man would fit it.  The other repair guy however said we needed a new machine as there were three pin prick holes where salt had corroded and water managed to find its way into the motor,  We were shocked but we were covered as the warranty said it was covered from two years of the machine being fitted into a new house, we had bought this specifically for this house and our builder confirmed the date we moved in, we proved this also with rates bills.  So we were shocked to receive a letter from AEG telling us they were sorry our machine had broken down after two years, actually just less and they would offer us a new machine at a discounted price.  When we asked why they were not abiding by their terms and conditions all went quiet,  A further few e mails and calls and we were told that as we had bought the machine ourselves and handed it to the kitchen fitter rather than the fitter buying it we were only covered for twelve months!  Disgusted we decided they could keep their discounted new machine, I didn’t rate it anyway and we decided to search for another one,  This is actually easier said than done as the one we really liked and we know from talking to our family next door that it is rated very highly by them as they have it , plus it has A+++ rating is out of stock anywhere in the vicinity to us and we cannot have it.  This will be due to COVID and the factories having been closed for so long,  Ever resourceful Colin has a plan.  Rather than buy one we don’t want now we will push ours on until the one we really want comes back into stock.  An order has been placed for some kind of specialist putty used in circumstances such as these and he will repair the two pin prick holes in the hope it sees us through until our new one can be sourced.  This specialist putty has been recommended by others suffering the same issue with the salt corroding the metal.  For sure when we buy our new one I shall follow my son in laws advice and buy my salt from Lidl as is comes in balls rather than granules so no chance of leaving a grain or two behind after filling the salt pot to corrode the metal. 

Yikes - somebody bumped our new car!  

Yesterday driving to collect something Colin pulled up at the traffic lights only for the car behind to keep going, right into the back of our lovely new car.  For a second I was not sure it was a bump, our car stops automatically if we get too close to anyone or anything and if somebody walks in front or behind it too closely- a great safety measure.  I thought this was what had happened but no, it seemed the lady behind us sped up thinking we were going to go through the lights.  She was so devastated and shook up we asked her to calm down, not to worry as it is only a piece of metal and it could be sorted.  It turns out I used to be in productions with the said lady at the Thespians Theatre.   Bless her she was hurrying to work.  It is just another thing to deal with and I pray we can sort it without using insurance as she really does not wish to go down that route. Could do without this right now but it will get sorted. So our car now needs to be looked at by two or three people for quotes.  What a time for this to happen. Still I have no doubt it can all be settled amicably ASAP. 

Pah

I just seem to lurch from one issue to another.  I will hopefully get my weight sorted out shortly with the drinks they can provide so I stop losing weight but in order to supply these I needed a blood test.  Due to my blood pressure dropping way too low we are also hoping to lower my ph medicines, For either of these things or happen  I first needed a blood tests.  One for a renal function test which should have been done three weeks ago.  The blood lady came to do it  with a blood for for a liver function test,  I told her it was a renal function one needed and her retort was “they are the same thing”. Now I was pretty sure liver and renal are not the same but decided she must know more than me.  Said test done and sent off I waited until I got the results, which were normal and informed my PH A Team.  Of course it was NOT what they needed so I have had to have my renal test done.  Now awaiting results so we can sort out my meds.  

A talk with Alex, part of my A Team

Due to issues as already mentioned I had a long talk with Alex today,  He told me to come off the spiroconlactose that just does not help me at all.  My muscles scream and my hands are clubbing.  It is awful for me.  So tomorrow I will not take that med again.  Then once results of renal test come back he hopes to slightly reduce my 100 x 3 times daily of viagara to see if that helps my blood pressure, oh I do hope so. So much to discuss.  He is ringing Colin towards the end of the week to discuss with him too. 

One thing that we have heard of before  and is very interesting is that he has known two patients with ph that got Covid and did very well.  He is convinced that because we take the meds and our lungs are already compromised the Covid does not seem to hit us the same way as with others.  We already struggle to breath so maybe too a layman it will be like being slammed with ph for a while, very scary all in one shot.  Who knows but it was intriguing anyway. 

My beautiful walk

Two days ago I felt well enough to go for a walk.  It was spitting with rain but I was snug in all my winter gear.  I walked on the canal listening to music through my headphones and walked back on the banks of the river.  How happy was I was to still be here ten years after diagnosis and able to enjoy such simple pleasures as walking in the rain in the beautiful country side. 

Once again I owe so much to my A Team and this is the time to raise awareness for ph,  I pray nobody you know ever gets it but if you are aware there is such a disease if you know somebody suffering with asthma that NEVER feels better even with the sprays or shortness of breath, or ohhhhhh too many things to list just check out pah.  Of course this does not apply to my ph friends who read this as of course they know all there is to know about their own form of this disease.  So this week is where we make it clear to all we know that WE ARE AWARE THAT WE ARE RARE.  I wish it was not so but there it is  Once again  I AM AWARE THAT I AM RARE.  For anyone wishing to feel for just a short time how we feel ALL the time try out this for size.  Pit a straw in your mouth.  Without letting it drop and breathing through the straw go about your daily business.  It won’t be long I can assure you that you spit out the straw,  Oh how I wish we could expand our lungs so easily.  So remember there are many hidden diseases and have patience, kindness and understanding for those that are suffering one of them.  

Last visit hopefully 

This is to my sons apartment to fit new blinds for the student renting it out for twelve months,  I needed to have new ones measured and made.  They have arrived and look well so tomorrow will be fitting day and hopefully we will be free of doing all the jobs we have had to do to ensure it looked it’s very best. 

The lady that bumped our car yesterday has arrived with a guy to take a look at the damage.  We do need to give her a chance but I feel that we will end up taking it to the proper repair shop for our car.  We do not want it to be visible and it needs to be repaired and look as new again.   I won’t tell you what her hubby ( partner ) said ( swearing) when he saw the damage as it is not bad at all but nevertheless it is damaged and we want it looking right.  I hope we do not have any issues with this.  We just don’t need it. 

I will go and see what is being said then get on with dinner.  A  cottage pie with loads of veg today.  We need it in this weather.  

Take care, keep well and warm love to you all. 

Carole xx

ANOTHER LIFE LOST TO PH

This has been said time and time again but needs saying again.  Please please do not let your organs die with you.  Sadly we lost Jemma Savage on 6th October due to ph.  The only "cure" for ph in most instances is a transplant  and we see time and time again our fellow sufferers dying through lack of organs.   Jemma was just 27 - a bright courageous girl who had lived her life to the full before sadly and suddenly suffering a heart attack and death.  The devastation left behind one can only imagine.  I dread opening my face book pages in a morning just in case we have suffered another blow such as Jemma.  It is just too sad.

We are coming up to the PH awareness time where we do our best to inform and teach people about this little known, rare disease.  Just because it is rare it does to mean it might not hit a family member or friend  I had never heard of it before diagnosis as indeed most people have not  but believe me once you have been dealt the deadly blow one quickly learns all there is to know about it.  There are different forms of ph and one of them is due to blood clots in the lungs.  We have quite a few people on here who have suffered and still suffer with this.  It is called PTE and the only way to remove these clots is to essentially "kill" the patient before trying to remove these clots.  This is a highly specialised operation requiring great skill and I must say too it requires a good deal of courage from the patient.  

I watched a documentary about this operation being performed in Papworth.  Not many specialists and surgeons can carry out this operation and it was fascinating to watch.  The patient was put on a by pass machine to drain their body of all blood ( of course one cannot work on the lungs if blood is being pumped through ) and then they are chilled down to an impossible degree before the op can take place  Only 20 mins is the allotted time for the surgeon to remove as many clots as possible ( sadly some are too distal in some patients so they cannot be cured but may feel a lot better for getting rid of some of them)  After dealing with one lung the body must be pumped full of blood again so the patient does not suffer brain damage and death.  Then comes the other lung and so it starts all over again! My own friend Phil had the op but his was not a huge success as too distal.  George Gaskin had his done as did Sharon Emma and my heart was in my mouth thinking of what they went through as I watched this operation.  In some instances the patient is cured fully as was the case with Rita Miller but in some the cure is only a half cure as is the case with my ph friends.  Our fight for life is amazing and the people who had this op knew that they would effectively been killed before the op took place, it must have been a huge decision to make but trusting in the medics they went ahead and signed the papers.  I bet they all watched with interest the documentary showing a patient going through this op knowing that they too had been in that same position in the past.  Trust is all they had, trust for the doctors and surgeons and all the medical staff to take care of all their needs and to bring them out of the operation safely and hopefully with a better quality of life.Where would we be without the NHS and our amazing medical teams.  We owe them such a lot.

I had a telephone chat to one of my specialists yesterday.  He asked how I was and I said not too bad at all but oh how I hate the new med they have put me on.  It is called something like spyrolactose and gets rid of excess salt in our bodies and also does not deplete us of pottasium as many of these water tablets can do. Oh my oh my the side effects are terrible.  I have come out with pin prick spots all over my torso, very itchy too and muscle ache like I cannot believe.  He immediately came back with "I will sort it" so I am looking forward to another tablet that will do the same job but hopefully with not the same side effects - though of course I am not stupid and most meds give us terrible side effects.  If I could just get rid of the muscle aches it would be a bonus.  We shall see. 

We have had an exhausting few weeks.  My son owns an apartment in central Leeds and though he had a buyer for it sadly this could not happen.  Due to Greenfell disaster the councils have put so many things in place before a property can be sold in certain instances.  The fact too is there are not enough surveyors to carry out the inspections so sales are being lost all over the county.  This is the case with my sons flat so we decided to rent it out.  The market is healthy for student doctors to rent and the rates they pay for properties on this particular row is very good so it just makes sense.  Rather than keep paying out rates etc get somebody in to do that for you and take a goods payment for allowing them to live in your apartment.  

We decided work needed to be done.  Decorating was good, very good but the bathroom needed more than a lick  and a promise.  The hot water tank needed checking out  with all safety in mind and it was condemned!  this was due to its age and the fact that it was part of a apartment complex and the damage that could occur if it burst.  So a very expensive thing to replace as well as needing a thermostat on the shower and checking all electrical and plumbing works so that it could pass its safety checks and be rented out with a clear conscience.  This has required us spending a lot of time in Leeds and prepping the apartment for the rental market.  Our agent says he has people waiting for it so we have moved as quickly as possible.  Today my son and daughter and Izzy are over "dressing" the place ready for the pictures to be taken to market it.  This is a job she loves to do and she was so excited and full of ideas.  I was more than happy to step back as interior design is not my forte, though in fairness once we have done a room up we do get nice compliments.  I would not think as my daughter does to get such as a mirrored round tray and fill it with champagne glasses and a bottle of bubbly.  I might have done a fruit bowl!   So over the three of them went with a car full of things to dress the apartment and a steamer to clean the entrance hall carpet where the tradesmen did not wipe their feet!!  This must look good as first impressions count.  Cant wait to see the pictures but we have said we are done with it and don't want to go over again.  We are so jaded with it and we now need to take time out.

On opening a message the other day I was so happy to read that we have an invite over to our cousins house in Spain for anything up to two months.  Their villa will not be used and they are always happy to let us use it.  Now I have never wanted to go away for too long cos we do take care of Izzy but I am also bearing in mid my illness and deterioration and that we must live our life too.  At some stage we will consider this more fully.  I would not fly, that is out of the question but we have done the trip by car up down many times when we had our own villa and there are many superb places to stay, generally Paradors on the way down so I think this is where we would be looking to go. This is not written in stone.  With this illness there are many things to consider but oh we have such lovely friends in Javea and we do miss them and the area so very much.  It is certainly something to bear in mind and maybe, just maybe we could have an anti covid jab to ease our concerns! 

Once again our grandaughter Phoebe has been sent home from school due to COVID. Thus is the second time and I believe there are 30 teachers off with it in their area so another two weeks of quarantine for her.  One week will take place over the school holiday too. Phoebe does go to a rather large school so I suppose there are more chances to contract it.  Izzy goes to a very small village school and I pray they do not get it there as I do think schooling is important, particularly with their peer group.  As they live in  different area to us we are not allowed now to see them, not even in their garden.  We had planned a meal out for the six of us but we do abide by all rules though sometimes it is so hard.  We did take a drive a couple of weeks ago and stopped by their place and left gifts for both Ben and Phoebe in their summer house.  They were all out at school or working so once again did not get to see them at all.  We miss them dearly and it just brings it hone to us how it will be when they move to Australia as they will after COVID. It is hard not to be able to se each other and cath up but for their sakes we do hope that next year their dream will come true and their move will take place.  They would be packing up to move by now had COVID not taken place.  Well my step son will be missing my cottage pie this year!  We always have the over sometime during the Christmas holiday period and always Chris puts in his order for cottage pie and rice pudding baked in the oven with a good cheese board and lots of chutney too.  This will not be happening unless there is a big shift in COVID and somehow I doubt that very much.

Hedgehog House

Colin & Izzy built a Hedgehog House in the garden, we have not seen any residents yet but the food we put out every night is disappearing, the entrance is to small (we think) for a cat or a dog so we are keeping our fingers crossed it is a Hedge Hog.

Colin is busy adding something to Alexa so that just by asking her we will get hot water instantly at all the taps in the house, just as and when we need it rather than wasting lots of water waiting for it to run hot..  He has just asked my to say the magic words "Alexa Hot Water On" and yes it works!  One happy chappie now I think. 

OK enough, I want to go down and get a drink of my homemade lemonade, nice and tart!  So  will bid you all a good day, thank you for reading my ramblings and I trust this blog finds you well and happy.

Warm love to all and thank you in advance for any comments, they are always appreciated.  

Carole xxx

THE STRAW THAT BROKE THE CAMELS’ BACK.

It’s been a while since I did a blog so thought I would stop being so lazy and get on with one today as it is a duvet kind of day.  Not an awful lot to report but at least if I touch base I hope to get some comments to keep me up to date with your routines etc.

I had a total meltdown three weeks ago.  I was trying to get some medicines from my doctor who just could not seem to understand that 40 mgs frusomide 3 x daily equals 120 mgs needed daily to be prescribed.  I kept getting just 18 days worth of meds then having to beg my pharmacist to loan me some.  This clearly could not go on. I would call at the chemist day after day to see if more had been prescribed only to be told no they were not. Actually trying to get through to the doctor to sort out this mess was so difficult as the receptionist seemed very reluctant to let me speak to someone with more power than her,  In the end this conversation proved to be the straw that broke the camels back.  Pent up emotions and sheer frustrations just hit me and I burst into tears.  I hate to cry, it’s just not me but once the flood gates opened there was no stopping them.  This set the precedent for the day and I just kept bursting into tears. Clearly there must have been more to it than my meds and I think the frustration of life still not returning to normal must have been at the crux of it. I get so frustrated when I think of how our lives are so impacted with this virus.  All the holidays cancelled etc for so many and yet lots of the young, though not all by any means all just seem to shrug off the rules and do as they please which in turn means more measures need to be taken. I do know some of the older generation also think these rules do not apply to them too,  I despair.  Anyway there it is, we must live with it and try to be happy doing so.  As lots of us have life limiting illnesses we clearly all had hoped we could pack as much into whatever time we had left, never thinking that a pandemic would change for all how the world had to change and our lives had to alter and our days would be spent in almost isolation instead of how we had planned it.  That’s the way the cookie crumbles.  

Once again we see that panic buying is going on.  Not for us, we shall just continue to shop in the same old way and if we cannot get hold of an ingredient we shall make do with another.  I have been trying out various new to me recipes with a great deal of success thanks to my little jars of spices and pastes etc.  They are all coming into their own more and more now as I check through the cupboards and fridge and freezer to see what ingredients I have then make up a recipe accordingly . Fortunately all have been a hit and I have gone away from sticking to my staple recipes  tried out for many years to experimenting daily instead of the odd time, it’s been a true taste bud sensation and we have enjoyed this very much.

When I had just reread this post I went into Facebook and saw Mandy Jane Vickers had posted a funny about panic buying.  It made me smile and I hope it does you too.  

At 1st I was afraid, I was petrified,

There was no loo roll down at Aldi and I nearly cried.

Oh I spent so many nights just thinking how you did me wrong,

I used to wipe,

And now I’m forced to just drip dry !

No anti-bac !

No bloody soap,

and if you think you’re buying pasta well you’ve got no bloody hope !

I would have bought that box of eggs, I would have rationed out my bread,

If I’d have known for just one second everyone would lose their head !

Go on now go, walk out the door !

All you bloody stockpilers,

You are not welcome any more !

Weren’t you the ones who just bought all the sodding beans ?

You selfish gits !

I hope you spill them down your jeans !

Oh no not I, I won’t panic buy!

Oh as long as I have alcohol, I know I’ll stay alive,

Though I can’t buy my usual cheese,

This will not bring me to my knees

And I’ll survive, I will survive, hey, hey !

It took all the strength I had not to fall apart,

There was just apples and 1 carrot in my shopping cart,

And I spent hours walking round just feeling sorry for myself,

The empty store, with boxes strewn across the floor

And you’ll see me, somebody who,

Cannot buy anything she came for, and it’s all down to fecking you

And frickin Reg from down the road is such a selfish blimmin git

Because he stockpiled all the loo roll so nobody else can have a s@*t !

Go on now go, walk out the door !

All you bloody stockpilers,

You are not welcome any more!

Weren’t you ones who just bought all the sodding cakes

Can’t you make a crumble,

Do you people not know how to bake ?

Oh no not I, I won’t panic buy !

Oh as long as I have alcohol, I know I’ll stay alive,

Though I can’t buy my usual cheese

This will not bring me to my knees

And I’ll survive, I will survive !

Facebook has been very frustrating with the changes it has made, so much so I was about to give it the old heave ho and forget it ever existed.  Even more frustrating is some things that are on my friends are not on mine and vice versa so we could not even compare about what we had learnt with each other.  I know not everyone’s has switched over yet but I am too old for all these changes and have never been up on computers so I just hate it when they keep trying to fix and make better things that are not broken.  Steadily I am learning a little more about it and hope to get this blog off but there is also the very real chance that it won’t get sent out and will sit in word forever more, just a lonely few paragraphs never to be read by anyone at all. 

All the machines arrived from Ireland to monitor my vital signs,  Another sign of times to come for us all I believe.  This box was delivered and opened with much eagerness to see what was in it,  It contained a computer and stand, only for the use with the machines which were all connected  to said computer via Bluetooth.  A gentleman rang us from Ireland to explain how to set them all up which were very simple but immediately we hit a problem with login on.  It seems it was set up for the American medical teams and we needed a different log on to work it here in the UK.  This was fortuitous as it happened as we were the first in the UK to be given this equipment and the issue was sorted ready for when others are to be offered it.  My daily routine now is to lie flat out on my machine that registers lung pressure then back to the bedroom where my computer switches itself on to tell me it is time to take my readings,  It then directs me through taking my oxygen and heart rate and then tells me to move on to take my blood pressures.  After that it tells me to step on the scale where daily readings are taken.  All these reading go directly then over to Sheffield where they can be monitored whenever my specialists need to.  So along with the Denervation that lowered my lung pressures and my two chips that keep track of my heart palpitations and the one in my pulmonary artery that measures the lung pressures I seem to be all sewn up,  I also have an app that enables me to do a six minute walk test when required ( I must include oxygen and blood pressure too as at hospital visits) before and after the walk which then gets sent over to my team again. Last but not least gadget is my Fitbit which is logged to their system too so that steps, heart rate when active or inactive, sleep etc are all recorded and can be checked out as and when required.  With all this equipment any test or check ups can be done without the need for a doctor or visits to the hospital.  Clearly if there is a concern as I had one last week a quick call to my A Team and all my stats were looked at in Sheffield by the them.  A course of action was decided and was taken by me and we will monitor everything for a month and check to see if there is any or no improvement,  We can look back at my trends and it shocks us to notice how my heart rate fluctuates hugely and how my blood pressure still overall is too low.  I suspect the next course of action will be to lower my viagara , we shall see.  My frusomide was lowered last week to see if my blood pressure got better but alas not a huge difference at all except that my belly and legs are once again retaining water!  It’s so frustrating and also very painful trying to walk on legs that have excess water around the knees and ankles so I can’t bend them properly plus trying to lug my huge rugby player thighs around instead of my generally skinny ones is hard.   Still it’s good to know all is monitored so hopefully no more hospital stays.  Just in case though pj’s still packed! 

Colin has been busy next door working with Chris (my son in law and in our bubble) to erect an enormous gazebo, there was so much work to do, so many heavy pieces of wood and tiny pieces too and felting and tiling.  Not quite finished in a day but they should complete it tomorrow hopefully where they will christen it with all the lights turned on and a fire and maybe a barbecue.  It does look good I must say and very impressive.  It is huge but their garden can take it and what an asset it will be to them when lockdown ends finally and they get back to all the entertaining they love to do. 

Today Colin is blowing all the leaves from the beech tree that land on our grass.  Beech leaves just do not break down and indeed we put some right at the bottom of our compost bin and they were still there almost two years later, untouched whilst the things above it were mulching down nicely.  Colin scraped out all the beech leaves and put them in the bin for the refuse garden centre.  When the leaves settle into the lawn though if we are not careful they just get trodden in and again just sit there and so do not allow the grass to grow or breath.  Now it will be an ongoing task to keep removing them until the tree has shed all of its leaves.  

A task that was meant to be done earlier in the year must now be done ASAP and that is to make a hedgehog house.  Pity we forgot as it would have been a great thing for Izzy to do with her granddad when she was living with us through the first lockdown.  He will make one for us and if successful then make one for Izzy and Harry’s garden. 

Izzy is very happy to be back in school and they seem well prepared for distancing etc.  It is a small school and they have designated times for each class joining and leaving the school,  I shudder  when I see some parents, though not all, waiting by the gates bunched together and none wearing a mask!  When will they learn. 

We went out for lunch at one of our local pubs and they were very on the ball with hygiene and distancing so we felt totally safe, It was so nice to be doing something away from the house and I enjoyed it very much.  When it was time to leave I decided to walk home.  At the end of the day I had managed 14500 steps which was a huge boost to my morale, not sure when I will manage that again but it was so nice to do it,  Why is it that one day we can do something and the next be flat out in bed!!!  I wish life could be more consistent.  

We are hoping to still get away with our bubble for a few days through the school holidays.  We booked it a good while ago and the kids are looking forward to being in their own motor home whilst Colin and I will clearly be in ours,  We will be six in total but who knows what changes will occur before that so not getting too excited.  

I am going to look up recipes for green tomato chutney.  Some of my tomatoes are doing really well but some I fear have left it too late for their skins to turn red.  I cannot bear to throw them away though so will check out a recipe,  I have pickled red cabbage this week, something I love but Colin hates so will see what he makes of the chutney. As it is the end of the week it is also soup making day, I make two a week when the veg gets turned into various soups depending on how much we have and do we have blue cheese as well etc and chicken or beef bones.  So my life is very exciting NOT but at least I do generally enjoy it. 

Ok, enough of my talking.  I will see if I can get Colin to send this out with this new Facebook format.  I do hope so and please comment so I know what you are up to.  

Keep safe

Warm love

Carole xxx

DOING A SIX MINUTE WALK TEST AWAY FROM THE HOSPITAL

As more and more things are being done away from the PH ward in order to keep us all safe I was asked to do a six minute walk test from home.  We were sent the app and decided to walk up and down the length of our Mount at home.  Everything ready, my machine that registers my pressures in my lungs turned on, blood pressure monitor and oximeter all prepared.  My Fitbit watch raring to go away we went.  As there is a slight slope outside our house we decided to use my scooter to get to the flat, as they do in the hospital.  This was not one of the walks where you need to keep stopping and going on the beeps, this one one that when you begin you walk for full six minutes.  All went well until we finished the walk and then Colin realised I should have been carrying his  phone that had the app on!  I decided to rest up for a while, have a game of Ludo and away we went again.  My pressure levels read, blood pressure, heart rate and oxygen and off I went.  I walked 556.86 metres which was around 30 metres less than my trial run but there it was.  I was still happy.  All pressures retaken etc and the results sent off to my specialists.  ( Izzy came in handy here as she jumped on my scooter when I got to the flat of the Mount and drove it so that once the 6 minutes was up I could jump quickly back on it and whizz back to my machines to take the readings) 

Now had I tried to do this test the day before the most I would have done would have been measured in steps and likely I would have managed around 800 steps only as the day was not good re my ph.  My heart rate has risen again which I hate and I do not know the reason why but am assured by my A Team that all is being monitored,  I just need to wait now and see what they think about this test and all results from it.  My team say that whilst not quite right with meds they will see if there can be more adjustment.  My head tells me it is just the progression of the disease  but we shall see.

My water retention remains good with just some swelling in the evening but that is fine.  I can’t lose any more weight though now being between 8. 7 and 8.8 - or  54. kilos depending which way your brain works.  Mine is still the old fashioned stones and pounds. Whilst it sounds a decent weight my doctors and Colin too knows well how quickly I lose weight when poorly and just how much I lose which would not be good so I must try not to let my weight get any lower.   My sister told me to eat chocolate but I have never been a chocolate fan, preferring instead fruit gums etc but since being so poorly in November my sweet tooth fled never to return.  My preference would always be for a crunchy salad with a dressing of just fresh lemon squeezed generously over it.  I must confess here to having cheated on what one can and can’t have with my meds.  Grapefruit is off the list but I love sour things and eat many lemons.  However on a trip to my supermarket this week I saw the most tempting looking red grapefruits.  One just happened to find its way into my bag and oh my how I enjoyed it later that day.  I peeled it as one would an orange and it was so delicious.  I reckon an odd treat should be in everyone’s remit.  I also have my own jar of olives sitting in the fridge, not to be confused with the other jars we have for everyone.  This is specifically my jar and I often eat quite a lot in the afternoon when it is my lazy time along with gherkins.  Colin thinks I have odd eating habits but I prefer these to his chocolate treats any day.  In fairness though he has cut down so much on treats over lockdown.   We must be getting healthy!!!!  

I can’t believe we have been in lockdown for as long as we all have.  The daft thing where we live is that we can’t see our family in gardens but we can go to the pub!  I despair but I am not picking at the government, it must be such a hard call with differing opinions coming at them from all angles.  I just want them to find a vaccine and for life to return to normality again for us all. We are blessed with a wonderful view here though at our home so as I sit here on our terrace listening to the lowing of the cattle on the hills and the sheep I am just thankful that so far none of my family and friends have contacted this disease. I pray this continues.  

Colin has begun decorating the house,  Though less than two years old new house wood shrinks a little and this upsets perfectionist Colin who has set himself the task of sorting it all out.  I have the good excuse of not helping as clearly the sanding down and the paint fumes are not good for my lungs.  Any tiny little shrinkage of wood has no chance against Colin. Armed with his sandpaper, sealant and calk away he goes.  This will be a steady away job though as we see no reason to go mad with any task, we have all the time in the world, well as long as our bodies keep on going of course.  

We are still undecided about going away in the motor home for a few days.  No it’s not COVID stopping us but the weather,  Though we both have all wet weather gear and can be ready for all weathers I think it’s one thing going away expecting reasonable weather and then coping with the bad than going away expecting bad weather and getting it thrown at us from all angles.  So the jury is out on this one.  There is no rush, we can make a decision any time and go for it.  

I will be honest and say I would love to go away in a super hotel and be well catered for but right now as things stand I know we will feel safer in our own home on wheels,  The cleaning and disinfecting is down to us, we are masters of our own destiny and Colin cooks delicious food in the kitchen of the motorhome when we are away so we need see nobody and no-one gets bothered by us. Neither of us are pub people, we would just take gentle walks and if it is a bad day for me ( which happens more and more frequently alas ) Colin feels safe leaving me in our home on wheels whilst he sets off on a bike ride, riding for miles around beautiful countryside.  Clearly if I was seriously poorly then we would return home or to the nearest hospital depending on the issue.  I am still troubled a great deal by my back - this started whilst in the motor home last November.  Whilst much improved I do get nervous about it going again.  The meds and the stress caused damage to my already poorly heart and I do not wish to go down that avenue again.

Just had a call from the company dealing with all the new remote monitoring equipment for ph I  am to have delivered.  It will turn up on Saturday and he will ring us on Monday for around an hour of  tuition on how to use it all.  Human robot now for sure but so very pleased to have the opportunity to trial yet again for ph.  We won’t be beaten COVID or no COVID.  I will go into more details of it all in my next blog when I understand it better.  

I must confess to enjoying shopping again, I grew tired of online shops.   Some I still do online but I do like to go around the supermarket and see the produce.  We keep well clear of everyone and sterilise ourselves and produce alike.  When we enter the store which is quite a large one we are checked in, still only so many allowed.  I use the self check thingy where you read the bar code and just pay at the end without the need for human contact.  I do take a few sheets of the sterile papers from the huge tubs at the supermarket  door and wipe my trolley down and then with clean ones wipe down the machine that reads the bar codes and wipe all my shopping as I pick it up and place items immediately into our bags.  This means once I return  home we do not have the tedious task of sterilising everything again,  Fruit and veg I do wash at home before putting them away.

We have been blessed with our garden. We have had so many sweet peas we give them away to my daughter and Izzy and I also wrap the stems in wet paper and deposit them on my neighbours doorstep. We still havea ton of Romanesco in the freezer.  Strawberries are now giving us fruit daily and our beans are producing the most wonderful tasty veg for us.  The apple tree has apples in abundance.  I think I will pick them and prepare for the freezer as way too many to eat.  This year we planted another apple tree and a conference pear tree too,  My toms are doing well now after a slow start and the squash is beginning to develop its fruits at last. Never having grown squash I assumed one plant meant one squash.  How wrong was I and there are many fruits at different growths on ours,  I reckon my recipe for spiced Thai squash soup will be used often later. Not seen the plum tree for a while as felt a bit ropey and it is on the bottom garden but maycheck tomorrow.  We are eating our own potatoes too so all in all we have had much enjoyment out of watching them grow, watching the cheeky squirrels eating our apples and our strawberries ( still don’t likesquirrels) and knowing how good and fresh it is and not touched by COVID. Squirrels appear not to like parsley and spring onions so they have been totally ignored by them. I have noticed them digging up our bluebell bulbs which had been given to us by a friend and dug into the ground by Colin.  Michael was very generous and gave us lots of multiple colour ones. I was so looking forward to seeing them grow but doubt there will be many left.  Colin still continues to bake the most delicious sour dough, it’s really good, he has perfected  the crust to how we like it.  Always a treat when bread making day. 

Our family next door have now finished their isolation after their holiday and returned to work.  Izzy had two choices, stay home with Uncle Haydn or stay with us again.  She was very divided and kept changing her mind.  Anyway she came to stay with us before her parents went back to work but decided today to go home today and stay with Uncle Haydn.  After around two hours we got a text from her saying she wants to come back.  Fortunately her mommy guessing this would be the case had made her isolate whilst she made up her mind so she is now back with us again.   Bike rides are on the agenda for them both and we are looking to buy her a new bike as hers is beginning to be a little small for her. 

I have ordered plenty of masks for us and Izzy as she will need lots when school resumes in around ten days time. New bedding is ordered as I saw some really lovely sets in M & S online and I also ordered new PJ’s. I have got quite an obsession with these as I must confess to spending rather a lot of time in them!    I have five sets sitting in a go bag in case of hospital admission and there they will remain until I pick up re my health again.  I only took five sets in last time and as I was  in for eight nights I did have  to wear some twice,  I hate this when in hospital, I like my shower and clean pj’s and of course as no visitors allowed no clean ones being brought in.   Yes I know I could wash them but I like them to be pressed too!  I am a bit finicky.  I kept wishing I had brought more from home. I also bought a jump suit or a boiler suit as Izzy calls it,  I was very wary of buying it feeling I would surely send it back but to my surprise both Colin and Izzy love it and I do too,  Though it does make me look stick thin it is very easy to wear and with a nice pair of pumps would be ideal for lazy days.  Very impressed with the cut and price too from M & S.  

One thing I am getting obsessed about recently are the tv screenings about farming families and communities.  I particularly love the one called Our Yorkshire Farm which shows the family of 11 pulling together to rear their sheep and livestock in the beautiful Yorkshire Dales.  Fascinating to watch children as young as 4 actually lambing the sheep.  (When this programme is on I generally prepare myself a snack of raw chopped cabbage with vinegar on it.  Colin hates even the thought and the smell and quickly leaves the room.  Vinegar smells vile to him. ) This family seem such a well put together team and the parents are doing a great job of teaching them life skills.  We are also enjoying very much Andre Rieu who is showing lots of his concerts,  We were booked for one in September and were eagerly looking forward to it but it has been cancelled now until hopefully next year.  It is still lovely to catch up with some of the concerts on the tv nevertheless.

Well all for now.  Once again I hope you all keep safe and free from not only the COVID but any illness as at this time we don’t want to catch anything at all.

Warm love to all.  I do try to answer any comment but those that go on the bottom of the blog on google sadly I can’t answer though I do get to read them. 

Carole xxx

NEVER BEEN SO PLEASED TO BE ADMITTED TO HOSPITAL.

Here I am back in the same ward I began my ph journey ten years ago.  My bed is in the same corner as it was then.  The difference is that COVID has changed so much of how things work here.

I was admitted to hospital on Friday 24th July after battling for quite a while with shortage of breath, low oxygen, palpitations and the fattest legs ever -  so  fat I could barely get in and out of bed due to fluid build up. No amount if upping my water tablets helped with my fat legs.   The selexipag that we had thought would help so much seems to have dropped my blood pressure so low that it was dangerous.  This meant that trying to move was not good as I felt dizzy and kept almost falling over, never a good thing.

I spent more and more time in bed, something I hate and my consultants rang daily for updates.  I even said to Colin that I didn’t know if I could fight anymore as I was not sure I would ever feel any better.  A life feeling as I did just would not be a life worth living so terrible had I felt. Fortunately at last I heard from my consultant the words I wanted to hear,  “ we will admit you tomorrow,  I was so relieved as by that time I felt life was unbearable. 

Bags packed on the Thursday it was also a day to say goodbye to our darling Izzy after she had stayed with us for 124 days!  Granddad had dutifully been her teacher, plaything, carer and best friend.  Our house would no more be strewn with dolls, brushes, clothes etc.  We could get back to normality as they were heading off for Spain!  It was so sad to see her go but she needed to be back where she belonged.  Our son arrived from Leeds to live in their house and take care of animals etc.  Life would be changing.

Izzy was in two minds about how she felt.  Clearly she wanted cuddles etc from her family next door but she had been having so much attention 24/7 and as she is a granddads girl she knew she would miss him so much.  Her emotions were all over the place, pleased to think she could go home and dreading not being able to come back but there was another pull for her to go home - they were going on holiday!   Exciting times and then the joy of having a brand new baby girl  cousin she could cuddle at last!  Going home won out as it had to do.  Granddad took her round with her bags packed.  She promised to FaceTime me daily and she did the first day.  I saw her being able to play with Harry at last.  She said she had missed cuddling him so I think she would have made up for it.  So she was gone and we were bereft!  Colin cleaned and tidied her room and wailed that it was just a guest room now, no clothes strewn around, no dirty washing in the bin, it was sad but it was how it had to be and now we could get on with dealing with me and this pah thing!  

She had been a great help to me with my scooter.  I wanted to walk but could not cope with hills and tired very quickly. We agreed that I would go up the hills on the scooter and then I would walk whilst she took over.  It worked very well and she is astute enough to see when I am tired.  On the way back she said that she felt it would be better for me to get back on the scooter to rest, how right she was as all the above was about to come down on my head.  

Friday we were up very early, I just couldn’t wait to get to hospital and begin to get sorted out.  Colin took me up to the reception of the ward but was allowed no further.  Not even knowing at this time if they would actually keep me in or just check me over he was told to go and wait until tests were carried out.  It didn’t take long checking my blood pressure to see how dangerously low it was and just how bad my water retention was so I was asked to ring him and say he could go home ..... I was in. 

Echo, ECG, Chest X Ray and numerous bloods were all done.  Good news the selexipag which had caused all this does not appear to have damaged my heart more than it was in January,  This was an enormous relief.  Now it was time to come off the drug that helps so many but for me was raising my resting heart rate, lowering my stats and causing me so much damage.  I needed to get off it swiftly but in a safe environment and here I am, in the right place at the right time. 

I was admitted to a side room to begin with until my COVID tests came back clear.  All staff wear face masks and often visors too,  I was safe and I felt reassured.  Here I remained for two days until I was able to join the ward where I began this pah journey.  ( the COVID test is not bad at all so if you need one do not fear).

So here I am, sitting in bed with a cannula in my arm which gets frusomide injected in twice daily and at last I can see an improvement.  My thighs which were huge have now at last returned to normal and my ankles, though still not right are beginning to look more normal.  

Sadly my blood pressure still remains dangerously low and so today I was told to drop my selexipag to just 200 mgs twice daily.  Clearly I will not be allowed home until they see a pattern of a good blood pressure.  All is well though.  I love the staff and there are two super ladies in here so we can have a natter.  Now my concern is for my daughter and family who are in Spain!

No sooner had they left the UK than they closed the air bridge!  Fortunately they are in a part of Spain that does not have the spikes in COVID but my concern is the airports and plane.  Anyway there is nothing they can do so they intend to take good care and enjoy themselves and worry about coming home in two weeks time.  With my son being at theirs too they have no concerns about the animals as they would had they been in a cattery etc.  I have not heard from them since their arrival so hope to hear soon.

Surprisingly I am sleeping quite well which is a blessing as no tv, we cannot go into the day room, we cannot associate with anyone other than the ones in this room. As I am rubbish with technology I have no means of watching things on my iPad as some have. But the day passes steadily away and all is well.  

I have to tether my iPad to my phone and am worried about running out of data so though I do read your messages I am answering them all here at once.  

(Update on this!  I have just learnt that we have guest WiFi!  Ten years ago there was none and I assumed things had not moved on though this morning I find we now have it)   Only been here six days to learn this!  

I am so moved by all the lovely support you have given me, it really touches me and makes me feel I am not alone going through this journey.  I have no idea yet when I can go home but I want things to be right when I do so would rather stay until all is well.

We are about to come out of lockdown.  Let’s hope none of us now loses the battle we have fought so hard due to corona virus.  I am reading how many refuse to wear masks which will put us in danger.   I feel sure we will be doing all in our power to continue to remain safe and that we ride the next spike which will hit us as sure as eggs are eggs.  

Update

Well another day another dollar so they say.  Here I am now on day 6 of being admitted.  I thought I had finished my blog but it seems there is still more.  I am now OFF selexipag totally and they have doubled my frusomide to try to remove all the water ( most is gone) but STILL my blood pressure is low.  It may well be that this will increase once my legs are completely good and I am come off the frusomide.  We shall see.  I am safe though and they want to check more blood pressures rising and sitting.

One odd thing today when they were taking my bloods. All was going well for the first three vials and then my body refused to give more.  It was so strange and never happened to me before,  The phlebotomist changed the needle twice and still nothing,  All we could do was to leave it for a while and try later.  After my shower all was well, weird.  This has never happened to me before so I hope my veins are not complaining! 

Day 7 same again with blood, my body appears to be in lockdown not wanting to give it.  They have added potassium to my meds as I am low on it,  Nothing else to report.  Onwards and upwards.  

Saturday 1st August

I think I will be able to go home.  Yesterday was a bad day but I think it was the heat.  Stats once again low and water retention so I was gutted.  Woke to a new day today and I feel way better and the blood pressure is up.  

I have been walking up and down the corridors to get my body moving. ( remembering my Pilates instructors mantra “ shoulders back and down and tummy in core engaged “) Yesterday it was so hard to do but today I see much improvement.  I am now waiting for the doctor but pretty sure it will be time to say adieu to this lovely ward and a huge thank you and then go home to my lovely husband and garden.  

We had a lovely girl in here who is facing the prospect of a transplant,  very scary of course.  I asked our own transplant girl Catherine Makin if she would talk to her as she is well placed to do so.  Catherine was pleased to help ( she had just finished her Jo Wicks exercises and was about to out for a walk.  She said how wonderful it was to be able to breath at last.  I think these two will get along nicely and Catherine will be honest and supportive.  Just what is needed when facing such a huge step.  So my stay in the hospital may just have helped somebody in great need by putting them both in touch with each other.  

Yes!!!,  

I was told I can go home if I wish or stay over the weekend and go home on Monday just to make sure I feel ok.  I decided to go home and here I am.  My legs are beginning to swell again which is worrying but I will see how I go on.  Lovely to be in my own home though despite being so well looked after in the hospital.  Let’s just hope I did not make the wrong decision,,

So I will end this blog now and hope that the next one is brighter.

Warm love to all

Carole xxx

IT’S ALL GETTING TOO MUCH.

Lockdown is over for many people but for the extremely vulnerable it continues,  Do I want to go back to life before lockdown whilst COVID is still around .......... no I do not so I will continue to isolate but I must confess to it getting on my nerves now,  I am so hoping for a vaccine but fear it is a long way coming yet,  The novelty of not having to bother to change out of pyjamas has gone,  I like to get dressed daily now  My hair is getting on my nerves and despite having jobs to do in the garden and house I long to be able to meet up with other people to enjoy meals out, coffees etc.  

Sadly too my health has deteriorated these last few weeks and this too has me feeling very frustrated!!!!   The selexipag that I was so looking forward to helping my health has turned on me and caused issues which now must be resolved quickly before my health worsens,  Fortunately as I have the machine that reads the chip in my pulmonary artery this has come up trumps and with the doctors able to analyse the readings we just may be able to sort this out sooner rather than later.  We are blessed with the medical team that keep in touch and write copious notes and compare etc to see where the help I so obviously need can come from.  A meeting this afternoon has hopefully come up with the means to help me feel better.

The issue is that though I got up to 1600 mgs twice daily of selexipag quite easily with just a few issues, the worse being the sickness and nose bleeds that were all encompassing  as I was getting  to the top dose, my blood pressure dropped alarmingly.  76 over 54 is way too low and so it causes breathlessness and fuzzy head etc.  This meant I was scared to do much as the fear of falling onto hard porcelain floors was great. Trying to walk became totally out of the question so once more my trusty mobility scooter took over from my legs so that I could at least get out on the trails with Izzy and Colin.  Each night I hoped for a better day to come only to wake up to the same, my  body did not like how much the med was reducing my blood pressure.  Everything has become a struggle and I have become rather lazy and lethargic due to feeling so lousy.   I am hoping that this will change.  We tried changing my dose of frusomide which is 80 mgs to 40 and indeed for a time to none at all but this only resulted in my being more breathless and my belly and ankles swelling up. Another negative is my oxygen dropping dangerously low and my resting heart rate climbing higher day by day,  All these things happen due to very low blood pressure. Life is becoming a nightmare and not something to look forward to.

The meeting today between my doctors has shown that my pressures are no better for taking 1600 mgs twice daily of the drug than 1200.  In other words 1200 is the maximum I need to get the maximum benefit. The extra just causes damage dropping my blood pressure too low.  One issue now is how to get the new dose as I have just been given the single tablet med for the first time!  So frustrating.  My hospital are doing all they can to get me the new meds here ASAP and I  should know tomorrow when that can be. In the meantime it would be dangerous to stop the drug and wait for new measure so there we have it,  I pray when I get my new dose things improve.  Time will tell.  So those on this drug strive so hard to get to 1600 mgs twice daily and for some it could be very damaging.  This comes as no surprise as when I was on the iloprost pump we were told there was no dose the same for everyone as weight, height etc had a bearing on what your body needed.  The reassuring thing for me now is that it will be fine for me to drop to 1200 mgs twice daily and hopefully will help my falling blood pressure.  We shall see. 

104 days and counting 

We have had our darling Izzy for 104 days, keeping her safe and enabling her parents to work.  Of course we love her to bits but must confess to looking forward to having time out now!  There is a reason childbearing age is where it is,  Colin does a great job teaching her lessons etc but is longing for time out on his long bike rides where he sees nobody, his thoughts all his own.  Now he constantly has a nine year old draped around his neck or her never ending talking!    It is how it has to be though but now in three weeks this will come to an end.  Our  son is moving into Izzys house next door and will take over for a week until both parents begin their holidays.  Of course we will miss her like crazy, her smile, her hugs and cuddles, her laughter bouncing off the walls but it will be the right thing to do for all of us.  On the plus side Izzy is at an age where she will always remember COVID and moving in with us,  I remember before her birth when I just wanted her to remember me and how much I loved her,  Through COVID we have had time together that would never have been in the “ normal world “ so I am trying to see a positive in this awful time we have all lived through and continue to live through.  I just want normality to return now though, not just for us but worldwide.  

Oh and joy of joys I have my colonoscopy on 28 th July to look forward to. I hope they have plenty of PPE  in place, very scary right now.  

Holidays that were planned have gone by as nobody can go anywhere.  It has been lovely though to see pics of lots of you having camping nights in the gardens, pool times, bbq’s etc.  It seems nothing has been able to dampen the spirits and I am so proud of all for making lockdown as fun as it could possibly be.  

Visit from family

Colins’ son and family came to visit from a distance on Father’s Day.  We spent a lovely hour together though of course no hugs or kisses.   We were telling how Colin made the most wonderful sourdough bread and the process it took to get the starter to perfection.  Our grandson Ben was intrigued so I suggested we gave him half of our starter - the discard -   I also suggested he and his sister make a simple soda bread.  They went away excited to try both, along with some frozen stewed rhubarb from my freezer ( prepared earlier ready for the arrival of our family from Poole coming to stay with us for a few days). This never happened as lockdown hit us six days later.  We have since been shown pics of the soda bread Ben and Phoebe made ( it looked delicious)  and told how lovely the rhubarb was in a crumble made by the kids.  Still waiting to hear about the sourdough and hoping it is as much a success for them as it is for us.  

We also had a visit from my daughter and son in law - they live next door - with a case of beer and many goodies from Hotel Chocolate for Colin, he did very well on Father’s Day.  It still seems alien to see family and not be able to get close, to talk from a socially acceptable distance but we all understand how necessary it is and must be. 

Colin and Izzy are going away for a few days to a farm owned by a friend where they can totally isolate but Izzy can ride her bike along the thicketed walkways, enjoy scooter rides and walks away from anyone.  She is not the most competent of bike riders so I hope she will come home feeling more at ease on it.  

She is doing a concert at the weekend for her friends on her piano, social distancing of course and we have asked her to practice but sadly all I have heard so far is her laughing and talking to her friends on the computer.  

I have taken to enjoying a drink or two a week of rhubarb gin and fever tree tonic.  Never more than two in around eight days but over ice it is a very nice drink.  I first tried this when away with friend in Bridlington in our motor homes,  As somebody who never really likes alcohol it was very refreshing and now I have half a bottle in my cupboard and a new one waiting to be opened.  Now when we next have our next ph conference, if it ever happens, I know my drink of choice.  

Well nothing else to say as lockdown has robbed us of many things but thankfully we are all safe and sound, we have all enjoyed each other’s company and kept in touch with friends ( though not as often as I should have I must confess). Let’s hope the next time I write a blog it is in happier times. 

It was lovely to get a catch up from Paul and Julia who bought our villa in Javea.  They were enjoying the pool in the heat of 34 degrees!   He wrote a very descriptive post and I could see myself back in my minds eye and see everything he had done or was about to do at the villa.  Here’s hoping one day we will all meet again there but in safety and enjoy all that Javea has to offer.  In the meantime here we are and I thank my blessings that bored I may be but the best thing is we are all safe.

Warm love to all and continue to keep well.

Carole xxxx