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

UPDATE ON CARDIOMEMS IMPLANT

Monday morning arrived way too early as we had to be at my specialist hospital for 7.15 in order for the implant to take place.  My bloods and general welfare had been talked about at a previous pre op visit so we were not expecting any problems.  Fortunately I was quite well and had done my best to steer away from anyone who I thought might have a cough or a cold etc.  

We got up at 5.15 in order to get ready, have a bath, breakfast etc and we left our home just before 6.00 am.  The roads at this time we knew, barring accidents would be very quiet and we do half our journey away from the traffic, driving over hill and dale until we reach the motorway.  

The study I am now doing is called CardioMEMS, It is for patients who have been diagnosed with heart failure as a disorder resulting from damage to the heart from various reasons.  Now though they are wishing to implant patients with pulmonary arterial hypertension so that readings can be taken of their pressures and meds can be changed accordingly, plus they will learn so much just be seeing how our readings change from day to day.

A right heart cath just shows a snap shot of how the pressures are at that given time. We well know our pressures can rise and fall for many reasons, lots of them unknown.  Now CardioMEMS have developed a technology that provides our cardiologists with accurate and reliable trends of pulmonary artery pressure measurements daily.  

The CHAMPION  Trial is already underway in America over 64 sites and 550 patients with moderate to severe symptoms of heart failure who had been hospitalised for heart failure in the previous year were invited to take part.  I am fortunate that I have a facebook ph friend in America called Joseph Thomas Lockhart who was implanted with this device for his heart failure a year ago.  He has been happy to talk me through the procedure and we will stay in touch.  It is now to begin in the UK so hopefully more will be signed up.  I know there is to be a patient panel of those having this device fitted so I will be interested to see how others feel after having this implant.

The sensor is small, about the size of a small paperclip and is delivered via a groin cath.  Once in place it cannot be removed as there is a huge risk of infection.  I have a sort of pillow that comes with an electric unit and through wifi it transmits my info to a website for my team to follow, analyse and advise.    

With this info it is hoped that my medicines can be changed to manage heart failure.  Now the consensus is that it can be implanted safely into patients with pulmonary arterial hypertension also so that their medicines and pressures can be measured too -  hence this new trial for those suffering with pah.   Alex my specialist rang the FDS and was approved that on my visits to the hospital my wedge pressure can be taken also. How amazing that my pressures will be done by the push of a button and not the right heart cath over the next two years.

There were around 11 people in the theatre so I was well taken care off.  The two people from the company that bought the cardiomems had never before seen the lungs of a pah patient and said it was fascinating  to witness the implant going into narrowed veins.  I was fortunate that all went smoothly and all had been explained so well that I was not alarmed when the cardiac monitor shot up so high it bleeped and turned red.  I knew this would happen.  All soon settled down again and after two hours I was able to go into recovery.   It takes so long as the correct place to put this has to be found, after all our veins are very narrow compared to the veins of somebody without pah and of course the team are always diligent in taking the best care of us.  The boring part was being made to lie down for two hours flat after the two hours off the table  then sit up for an hour before being allowed out of bed.

Once dressed the two from the cardiomems company came to see me to show how I was to use the machine. They both complimented me on how still I was throughout it all the time I was laid down having the procedure.   The truth was it was so interesting I did not feel the need to fidget through boredom.

As they talked me through how to do the readings etc it appeared to be quite simple and though the "pillow" I have to lie on whilst taking the reading was hard as heck in truth the whole procedure daily will take no more than two to three minutes.  They thanked me for taking part in the study but I told them it was I who owed the thanks.  The procedure had shown that my pressures had risen and now hopefully between us we can try to bring the pressures down.  There is talk of me adding selexipag to my list of meds but I would certainly rather wait until after our cruise as I know too well the side effects of this drug.  We did take my readings this morning and all went well and my pressures were sent off to Sheffield without my doing anything than other laying down and clicking start.

I am feeling exhausted today but I know that will change, maybe by tomorrow I will feel less tired.  As Colin said to me even though I did nothing but lay down and let them do their work it involved my body and heart and lungs, I am bound  to feel tired.

So yet more research and I know in around six months there is even more to come for me. I consider myself fortunate to always be offered something in the world of pah.  Long may it last until we have the cure.  

Izzy

World book day.  Here is a picture of Izzy.  I think you can guess who she is meant to be, though one of her school friends thought she was a chef due to her wearing the apron!  We thought she made a wonderful Alice in Wonderland.  

I must point out that this picture was taken after a day at school hence her looking a bit like she had been dragged through a hedge backwards!  There is nothings she enjoys more than dressing up and she has many outfits of different characters.  She loves to have her friends over and they all dress up in costume for the day.  

We certainly never had days like this at our school.  Even on the last day of term we always had to wear our uniform, plus our ties and our berets.  

When she returns from swimming tonight she will don her master chef costume.  I want her to make her own chicken nuggets from scratch.  I have taken out a nice piece of chicken and will get the panko breadcrumbs etc out when she arrives.  Hardly master chef cookery but at least we know that all the ingredients are fresh and as healthy as we can get them. 

The family have recently returned from a holiday in Disneyland Paris. They had a ball and must have returned with thousand or more picture, plus of course lots of mementos of a time well spent.     Izzy keeps telling us a little more each time we see her of all she saw and did.  She had tea with the characters and got all the autographs she could possibly collect. Of course you have to pay for the autographs, unlike when it first opened in America.     Our friend was the first Alice in Wonderland and her picture is in a book - I saw it but sadly could not purchase it.  Now the parks are realising there is yet more and more money to be made out of their visitors and so the price of the holiday rises steeply each time you leave your room. Still the memories will last a lifetime and they cannot be taken away.  

Our holiday

We were certainly ready for it though dreading the weather as the long warm days of our false summer were on their way out to be replaced, we were told with gales and rain.  How fortunate we were that the rain, though it did come down fierce and the wind blew hard all happened whilst we were tucked up safe and warm in our lovely motor home.  Our days were spent with very nice weather so we were blessed.  We have all the necessary gear for any type of weather so it would not have put us off going out in it but always nicer if the wind is not howling across the skies.

Our first stop was Flamborough but to be honest I was not feeling too good so we did not do much,  I did not want my illness to impact too much on our time away so played safe.  The following day though was different.  The weather was again quite hot and we went around all the surrounding villages of Bridlington.  How pretty they all looked.  Clean well kept villages most with honesty boxes selling their wares of eggs or jams and pickles etc.  The warm sun shone down onto their pink stone walled cottages and their picture postcard gardens. with willow hedges or well tended green growing hedges of all types of shrub. We enjoyed looking at the names of their cottages -  Honeysuckle House, Home  at last - Peaceful retreat etc.  All were very pretty, even the graveyard was tended to and there were lots of flowers on most of the gravestones.  One of the tombstones we came across was of the eight  men that lost their lives in a fishing boat accident a few years ago.  It was bountiful with flowers placed their by either their families or well wishers.  The church was open and it was such a peaceful scene inside and a nice place to rest for a while. 

Onward then to Bridligton town centre which it is honest to say we were dreading.  I had been told it was now a dump so expected to feel sad at seeing neglect.  What a pleasant surprise.  Much work has been done to renovate this old fishing town.  The promenade, soooo long and beautiful led to a new fun fair but it was not all gushy and loud, rather refined.  Here there were many inside facilities, a swimming pool with saunas offering any type of treatment you could ever desire.  The cafe was well tended and the food looked good..  Squash courts and tennis courts for those that wished to play were all new and welcoming., truly a lovely place.  There is a model village too for those that wished to walk a sort distance.  

Sowerby Hall lies just one and a half miles away.  It is renown for its gardens but to be honest at this time of the year there was little worth looking at so we did not bother.  The zoo was open for those with young ones to attend. Surrounding this hall is an enormous golf club and it looked to be doing well if one can go by how many people we saw playing the game.

After a couple of nights it was away to Whitby, yes I have told you before how we love it.  Quite a few clothes were purchased here by me.  I did look for some Whitby jet earrings to replace the ones I had thrown away in a tissue years before. I could not see any quite like them so left it for another day. We almost purchased some freshly smoked kippers from the smoke house but the thought of how long the smell would linger in our motor home put us off! 

York came next.  There is a great shopping mall here that sells all designer clothes and bags, shoes etc. Once again I did go rather mad here buying way more than I expected to but as most of them were for gifts I felt no guilt. Now comes the task of wrapping them all, something I really hate!!  My biggest delight here was to find an ecco shop, one of my favourite shops for shoes that was closing down.  Everything was so cheap so I bagged myself a lovely pair of pink soft shoes I can wear with my navy trousers for the princely sum of £34 instead of the original ticketed price of £120.00  Bargain I thought.  

Colin cooked most nights as he enjoys it but we just had to have fish and chips one lunch time.  We were recommended a really good fish restaurant and boy were they good.  The haddock, we both hate cod, was white and flaky and fresh with crispy batter.  Naughty but nice.  Another indulgence was a piece of cake at the Marina opposite our site where we were staying, in a farm yard.  The Marina is huge and their cafe, though expensive to my mind did serve delicious cakes.

Back to the farm where baby pigmy goats had just been born Sadly the mother died so its baby was being given to another pigmy goat who had herself just given birth to twins. Slathered with the after birth of the live new mother the new goat was put in the pen with the other two new born twins. We were hopeful she would take to it when we saw her licking it. The following day we went to see it and we were happy to note she was still with us although she was having a bottle at this time. She was too puny to push the others out of the way to be fed by the surrogate goat so they were feeding her in the hope that in a few weeks time she would fatten up and be able to suckle from the mother herself.  

This farm is soooo nice we intend to become regular visitors. They are going to make it a petting farm so Izzy will love it too.  Big fat sausages from their own pigs were purchased by us along with a dozen eggs from the chickens that were scratching around all over the farm yard.  What a gem of a place, we were blessed. 

Sadly all good things cone to an end and I had blood tests due for a procedure I was to be having shortly so we returned to reality.  

It was fortuitous we returned when we did as the following day the long buffet we had ordered for the lounge arrived, made in a nice grey linen cloth it looks well sat inside the bi fold doors.  Also arriving on the back of that were two big lights with shades exactly matching our walls and the blue and gold of the lamps themselves could have been made for our house. Now all we are waiting for are the voiles I can pull on when the days are too hot so we can still see our beautiful views but keep out the strong light of the sun.  

So here we are back to reality.  Colin is playing the piano and I had intended to go round and see the family but they are all out,  They will have much more interesting things to be doing today than entertain me so that leaves me with the awful task of wrapping all those gifts I mentioned before.  I love to buy them but that is where it ends!  

I will end this blog here as I did promise to have it out for you on Tuesday after I had the implant and I know sone of you are very interested in what it all entails.

Much love to you all.  Thank you in advance if you bother to comment or click like, as I say every time but I mean it. That simple act means such a lot to me and to anyone who blogs.  

Keep well

Carole xxx