Saturday, 29 July 2017

And rasberries for breakfast

Our holiday got off to a flying start as we first headed up the coast to Whitby to visit with my godmother.  As I feared she was terribly frail as the cancer is really taking its toll.  I was scared to hug her tightly in case she might break.  We talked about the good old times we had shared with my parents and Ken, my deceased godfather.  We had so many lovely memories to share which was very comforting for us all.  We talked of getting up at the crack of dawn and meeting them down at the fishing port to see what the catch was. Dad and I would hand pick the ones we wanted to eat for breakfast or for the evening meal.  

Colin and I went down into the town once we left her and the smell of the sea, the salty tang in the air combined with the smell of fish made me long to be small again, with no worries ahead and the warm comfort of my dads hand as we walked back to the car with our bounty from the sea.  So many memories were evoked in our little time spent here but we had to move on, our holiday needed to begin in earnest.

We called into a site at Edinburgh, such a beautiful city.  We shopped until we dropped and we went for a drink on an avenue where we met three lovely girls from Glasgow up to see Wet Wet Wet.  We shared their table and they were well into their third bottle of Prosecco when we sat down.  What a pleasure it was to talk to these three nurses.  They made us smile so much and told us where we should be visiting. We took it all on board and fully intended to go on our way home but sadly things intervened and this was not to be.  Were it not for my absolute tiredness that engulfed me I would have loved to have spent more time with them  I hope the concert was as good as they were hoping it would be.

Onwards then to Killin Falls and such a wonderful trundle through this tiny village.  We went to actually sit on the rocks at the side of the falls and so lovely it was to feel the spray on our faces as we saw the magnificence of this water tumbling gently down the rocks at our feet.  How I loved this place and long to return.

Going back to our motor home we went a different way and saw there were so many raspberry bushes  full with their bounty.  Of course my ever present little bag came out of my pocket and I picked enough to go on our breakfast dish in the morning  They were big and luscious.   A deer passed in front of us as we trundled back, not very old at all it stood amongst the bushes and watched us with its beautiful big almost black eyes.  There was no fear at all to be near the human population and I marvelled at the beauty of this magnificent animal.  When we all tired of examining each other it slowly walked away, its head held high.  What a pleasure it was for me to see this.

Into the motor home again and this time to visit one of our favourite places, Fort William.  Our site was at the base of Ben Nevis, a mountain that Colin has visited so many times, walking up and enjoying so many  views from the top.   Not for him though the tourist path, he always choose the difficult routes.  One time he climbed it in winter using his ice axe and his crampons.  He does not like easy stages in anything!

We went for dinner at the base of this mountain and what a friendly bunch they were behind the bar.  I rarely drink, preferring generally water but hey, I was on holiday!  Not sure of what to have the guy behind the bar proceeded to give me tasters of many of the drinks in the pumps.  I laughed and said at this rate iI did not need to purchase a drink, I was very merry already.  A lovely meal followed before we went slightly inebriated, only slightly, to our bed.  

Our next stop was to visit friends in Ardtoe, a tiny place where in fact the cottages numbered just three!  There were some of the old crofts around though no longer in use since the Scottish government gave them huge subsidies to build new crofts.  It all added to the charm of the place.  Colin went out in the boat with Philip, a family member who holidays here each year to pull up the lobster pots that were set every day.  The family have a small boat and put out their pots daily.   the catch was magnificent.  Two beautiful lobsters and too many prawns to know what to do with.  Philip and Trevor would boil these and prepare them for the freezer.  We took sufficient prawns for our evening meal and they were truly delicious.  

We stayed here for two nights and Colin fished and caught us a mackerel which we had as a starter for our evening meal.  This place is truly idyllic, magical and holds many memories for Colin.  Alas it was here that my back "went" and I screamed in agony.  I had not been doing anything silly, did not bed down or twist, something happened in my body and this for me was disaster.  

As I suffer from ph I know many medicines react with our ph meds so we are told to stay clear of them.  Ibuprofen is one of them but for sure paracetamol alone would not even begin to touch this pain.  Miles from the nearest doctor I had no option but to take them.  I know for a fact they make our INR rise sharply but what could I do.  I lowered my daily dose of warfarin and hoped for the best.  There was no signal for a mobile phone here, no wifi, nothing so it was self help only.  I knew if it did not begin to right itself it would be homeward bound for me but decided to try to get on with it and so off we headed on our journey once more.

I was sad to leave this place.  I would wake from sleep to the sound of the waves nudging the rocks and this would lull me back to sleep, the gentle stirring of the water and the bleating of the sheep as they nestled under the tyres of our motor home.  Don't worry no sheep were harmed by us at all. 

On we drove, most of the time with me gritting my teeth against the pain in my back.  We stopped at Eilean Donan Castle.  This scenery was magnificent and the pine backdrop was mirrored perfectly in the water of the Loch, oh to be a painter and put brush to canvas to capture all this beauty.  Sadly here though we saw a dead calf at the side of the road.  We also saw signs that warned us to take care as there were Feral goats for the next two miles.  These signs did not help this poor calf.  

Sadly my back was truly bad and I wanted to scream in agony.  I was like an addict counting the hours until I could take my next "fix" and this particular one being one I should not be having, the ibuprofen.  

Our penultimate stop was at the Glenuig Inn on the side of beautiful Lochailort.  Nestled on the shores of this loch we went to the Inn for dinner.  I could not eat much but settled on Cullen Skink, a true Scottish recipe for fish soup.  I have had it many tines but never one to beat this.  As there was a smoke house only yards from the restaurant we assume their fish is so fresh.  The bread that accompanied it was fresh and home baked.  With two huge slabs of this and a whole load of butter, yes bad for the arteries I know, it made a magnificent supper for me.

We decided our last stop before home would be a place called Moffat and how lovely this small town turned out to be.  Here we actually did a pub crawl, well to be honest we visited three pubs before going for a Chinese take away and taking it back to our van.  Definitely made the list of our must visit places again.  At the entrance to this site there was a home made pizza oven and the man that owned it was just stoking up the fire and advertising fresh home made pizzas.  We thought about it and decided it would be one for next time.

I had wanted to stop at Gretna Green on the way home but by then I knew I needed to get myself in a more comfy position and relieve the jarring of the ride so we headed straight back to home.  Oh the delight of seeing an envelope I had been hoping to receive with some good news in it, more about that at a later date.  I rang my hairdresser to and made an appointment for a complete hair do, I really must get this "Back" of mine sorted out soon.

Whilst away sadly Lyz Clematis, one of our admins fell poorly and was admitted to hospital  They are referring her back to the transplant clinic as it is feared her disease is progressing faster than was hoped.  I am sure we all pray for her to get fit enough to return to her family soon.

Another source of great joy was to receive a post from Marc Facer with this superb news.  HE NO LONGER HAS PH!  It seems that he has a complex issues, well a few but what they believed was ph initially turned out to be a lack of vitamin D, he was totally without this vitamin in his body.  Now I don't even begin to understand what this means so I asked Marc to please explain it more fully in a Facebook post before he left us.  He kindly did.  Now this is extremely rare so please don't all begin to wonder if your ph is a lack of this vitamin, would that it could be, for sure.

Home sweet home and our plan to call and see Izzy before she left for holiday the following day worked out so great.  Colin rang her and was talking to her on the phone, not letting on we are outside the her door.  We then rang the doorbell and as the door opened Izzy, who was on the stairs stared for a split second with wonder and said "is this true"  with a huge squeal she ran to be enveloped in grandads arms and was so overwhelmed that she had grandad back again.  She kept saying "are you back, are you back" and we told her we had come to see them all before they left for their holiday  I was presented with two home made pots she had done at her holiday club and was pleased to put them in our airing cupboard to dry out further before they go on display.  

So here I am home again with some wonderful friends asking how they can help.  I cant wait to see them.  I can get on Facebook all the time now and at last I saw all the lovely messages you all sent me when I last posted about my back.  How truly lovely it is to see so much support and I thank each and every one of you.

All for now, cant do anything more about this silly back of mine until Monday but in the meantime there are exciting things to deal with.

So I love you and leave you with the words once again of thanks, thanks for being there for me, thanks for caring, for reading and for liking and commenting on my posts.  

Warm love


oh and for those on the transplantlist still waiting, remember  I said generally somebody gets the call whilst we are away don't forget this one......  I still officially have a further 16 days of my holidays so don't hide your hospital bag away just yet!

Tuesday, 11 July 2017

For those on the transplant list - Be Prepared.

A heads up for those awaiting transplants.  Be prepared!  I say this as generally when we go on holiday somebody gets the call.  I think there has only been one year this did not happen since I was diagnosed.  Have you bags packed and by the door because I will actually be shocked if I do not see somebody has got his or her wish.  

This will certainly be the last time I write a blog for four whole weeks.  George Gaskin don't you dare write a message saying thank goodness!  The internet on our Scottish holiday is generally sporadic to say the least so blogs are very much out of the question.  We head off to Scotland on Thursday, stopping en route to visit my seriously poorly godmother who is sadly dying with cancer.  We shall then just go where the mood takes us until we meet up with friends in Arto, on the west coast for a couple of days.We have steam train journeys planned and wanders around little villages as we travel from one side of the coast to the other.  

Whilst we give ourselves four weeks it is not set in concrete.  There will be warfarin clinics to fit in whilst travelling and of course see how I go with my health.  I seem to be doing ok except for my blessed neck.  Once again it has "gone" and is incredibly painful due to my needing an op on my fifth and sixth vertebrae.  but of course this cannot be done due to my ph so pain injections are the order of the day.  I am hoping somebody cancels today or tomorrow and I can take their place.  I have spoken to the secretary and all is in her hands.

We have not done much this week so this could possibly be the most boring blog ever.  I have been catching up with the journal I do for Izzy as this has not been updated for a few weeks.  I do write a few notes so I don't forget so it is easy to tell her  all we have done together.  

I did have a call from a potential denervation patient who wanted to talk to somebody who had had the procedure as they were considering whether or not to go ahead with it.  All I could do is say how it was for me, and how I feel I have improved since this was done.  After a lengthy talk they decided they would, if all tests showed their eligibility,  go ahead with it.  I hope their improvement goes down the same path as mine.

Saturday was a lovely day and we did do something nice instead of preparing for four weeks away.  We decided to head off to Hebden Bridge, just around seven miles away and park the car.  After a trundle around the town which is always lovely and even more so as they were having lots of activities around we moved down the bridge by the river  to see what other delights were going on.    In the square they had the "mummers" performing and this always attracts a lot of attention.  Just down the square a little was a man playing a guitar, and very good he was too.  As we had decided to follow the Calderdale Way to Gibson Mill at Hardcastle Crags there was no hanging around for us.

Off we went past the "thingameejig theatre"  Yes this really is the name.  It always brings a smile to my face and I think of my mom and dad.  This was one word used often in our house.  Mom would see dad rummaging around in drawers or cupboards and ask him what he was looking for.  His answer was "oh you know the thingameejig"  when mom looked at him puzzled he would say "you know the doo da"  again a look of puzzlement on her face and he would come back with " the whatchamacallit". This dialogue would continue for quite some time.  Of course as he could not remember the name of what he wanted all these words came out instead.  Then when he would say what it was he was trying to do that required the "thingameejig" mom would find the implement he required and peace would descend once more whilst mom put back things in their correct paces after his rummage.  

Onwards to the Calderdale Way which takes us along the path of the river with its tumbling water sending gentle sprays out to those getting too near.  Dogs were playing alongside children cooling themselves down in the heat of the sun.  As we continued past there were lovely hedgerows and we could hear lots of activity beyond it.  We took a peek and was surprised to see that there was some kind of gala being held here.  ahead of us we could hear and see Punch and Judy just getting into the part of the story where the dog took the sausages.  Children were howling  with laughter and I remembered taking mine to see this show when they were young.  I believe the part where the policeman uses his truncheon for physical assault has been stopped due to EU regulations.  Madness! 

So on we continued and when we saw the bowling green and we also could hear the sound of the croquet mallets hitting the balls on the croquet lawn we once again took a peek.  This time we encountered a lady wearing a pinny, apron to those that do not understand the Yorkshire idiom, and we were invited to partake of a cup  of tea and a piece of cake.  Way too early for us so we declined and continued.  The Calderdale Way is beautiful and sheltered us from the heat of the sun.  The tree lined route stretched away before us with the sun sending its rays through the branches dappling all in front of us. The smells coming from the hedgerows was so lovely and earthy.  On we went until we came to a gate where we saw this plaque on it .................... I have not bothered to google the dog who was lost here or how he was lost but I may do sometime.  Over yet another  bridge and onwards past The Blue Pig public house at Midgehole, what a lovely word I think,  sitting in a quiet spot with just three cottages nestled alongside of it.  

We continued up through Hebden Hay until we reached the cafe at Gibson Mill.  There we shared a table with a gentleman and his companion.  It turned out he lived quite close to us, just the opposite side of the park we live by.  He was talking with such affection about all he had been showing his companion who was over fro Canada for a visit.  His last words before we went our separate ways was that we were fortunate to live in a hidden gem.  He is right, we really are.  

Sadly time to return home again and we wended our way back exactly the same way we had come.  Back in the Square I noticed they have opened up a tiny shop selling earthenware pots.  I could not resist taking a look as my cleaner had by accident knocked and broken the lid of my onion pot.  Maybe I could find a new one.  Nothing was here though to match the one we had bought in Spain which is actually in the shape of an onion and it has a face on it weeping!  The lid was the top of the onion head.  Colin has repaired it and it will do for now but I would love a new one.  

On the way home we called at Chris and Danielle's place as they were away for the day and we knew the cat was home alone.  Now I am not a cat lover though my other half is.  Even I though was shocked by the affection I have for this little bundle of fluff.  She moves so quickly though I am always scared she will get squashed under feet.  she is a house cat and is very affectionate and loves to play.  After a while we left her to her own devices whilst she waited for her family to arrive back for more cuddles. Home for us and a well earned rest.  

Anyway all my things are now ready for the holiday except for completing my boxes of meds.  I cannot do that until I get my INR results tomorrow.   I now have time out so I can go and enjoy watching Izzy swimming tonight at the baths.  She loves the deep water but of course in her lessons the water is not so deep.  Grandad takes her playing for half an hour before the lesson and she is straight into the deep playing and diving down to collect things he throws to the bottom.  Her mom will be surprised when they go on holiday this time as she has improved so much.

So away I go, no blogs for a while but I will try to keep up with all that is happening in dribs and drabs.  Go well everyone.  Again thanks for reading and the likes and shares.  

Warm love to you all

Carole xxx

Thursday, 6 July 2017

Am I living or dying?

What a question

I asked myself this question after receiving a few private messages from some of our newly diagnosed pulmonary hypertension friends.  For me the answer is very simple, I am living!!!  We all have choices to make in life and mine is to live even whilst I have this terrible disease.  

I think my first year of diagnosis was the hardest.  I could never get over the fact that yes, I had been told I was dying and the reason was that I had this dreadful condition that would, I was informed, slowly suffocate me from the inside.  How terrifying that was.  Can those of you without this disease imagine the horror we all feel when dealt such a tremendous blow.  So I admit my first year, living with the hickman life (this line was what eventually gave me a life back) was a life where I was not living but dying.  How terrible it was too.

Now seven years down the line at the end of this month since diagnosis I see things so much clearer. Even since I was diagnosed more medicines have been added to the arsenal of the ones we have, being the weapons we need to control our illness.  Even as I type this research is madly going on all over the world to find a cure for this disease.  More specialists are choosing to come into the world of this oh so fascinating disease of pulmonary hypertension.  The medicines I take have helped me to live a life whilst fighting the battle I face every second of every day.  Fight it I will and I aim to try to do all I can to live as normal a life as I can whilst living, yes living with this illness. 

I wake each day, after a terrible nights sleep I admit to a fresh day dawning. With all of its hopes and possibilities before me.  I do my best to concentrate on the things I can possibly achieve rather than the negative.  If my ph is having a day where it raises its head too high above the covers then I do what I must, I rest, I take a duvet day and listen to my body when it screams for me to give it a chance to "come round" a little , I help my body to deal with al the stress of ph.  I always assume that a better day will come, I just need to wait a little time for it to come around again.   

So in answer to the question am I living with ph or am I dying with ph there is no question in my mine.  I am living with ph.  I refuse to be defined by this illness.  Just remember all the medical knowledge that continues to open up about our illness.

Nicole Burish sent a link (Below) to a list of the 25 secrets of people with chronic illnesses and for the most part it defines those of us with ph.  I found it a fascinating link as I opened each page and thought "oh yes that is me"   I also feel that the new ones whose families have not quite "got" what this illness is like as we generally look fine should show it to your families and friend as it explains  such a lot about how we feel from day to day, minute to minute.

So a new day has dawned.  I aim to get this blog off in the next couple of hours and then see how I feel.  This something we cannot know until we have gone through the task of getting washed and dressed as it could change in the time it takes to do these things.  I try to be optimistic though rather than pessimistic and think I shall take a trundle dow the Hebble Trail to see how the fruit in the hedgerows are coming along.  

My hope on this gorgeous sunny morning is I shall "live" this life and enjoy the sights and sounds and smells of the countryside on my doorstep.  As I weave my merry way down the trail I know I will hear the rustle in the bushes of the tiny animals that seek to hide themselves from me.  I will hear and see the stream as the water flows gently down to join the  River Calder and I will hear its gentle splashes as it encounters rocks and stones, I will see the sun move around the sky and if I look up at the correct time I shall see the trails in the sky made by the vapours of the aeroplanes taking or bringing back the holiday makers.  My mind will take me into the plane and I will "see" some of the occupants and their anticipation of what lies ahead when this journey is over.  I shall take my little sack of sandwich bags and remove one ready, hopefully to take a few of the fruits I shall find in the hedgerows and add them to a crumble or a pie. I am never greedy, I take only small amount as I wish for others to enjoy this fruit too.  

Once again I answer my own question, Am I living or dying?  You tell me what you think and ask yourself the same question.  I hope your answer is the same as mine.  Don't give in to negative thoughts.  Stay strong, stay positive.  

House plans

Well it was nerve wracking  I will admit to you all.  So much depended on answers we were to get from our builder and believe me, though we had gone so far down the line with the purchase of the land, the removal of the trees and most hedges we truly would have backed out and the eleventh hour.  

The meeting went well and as Colin put a tick against more and more of the questions he had prepared i could feel my sense of anticipation growing, All appeared to be going well until one of  the very last questions and this needs yet to be answered before we go ahead.  This question was how far down will they have to go to make the foundations safe.  My daughters house is built next door but the question asked by our architect and the builder is "why did the original builder not build on this part of the land"?  Did they know something we have not yet seen, is there something we do not know underneath this land.  It was farmland many years ago, hence all the beautiful dry store walls surrounding it.  It is in an idyllic spot with amazing views of Norland Moor spread out in front of us, hills I used to walk up often. We know from previous surveys that there is nothing poisonous on this land The question needs to be answered and this requires a man and equipment that digs holes deep into the ground to determine the levels of where the clay is to build a firm foundation.  We anticipate this will be carried out this week and if so then the answer is an absolutely wonderful YES, please begin the build. 

I asked the question of when he could begin and the answer was September or October,  When asked for a completion estimate he says it should be a six month build.  I add on to that another three months.  I know from experience they never go to schedule.  The beauty of this builder is that he has also factored in a lovely glass wall around our outside terrace which will give us the feeling of cosiness even when the wind is blowing.  As we are having bi fold doors it means I can enjoy an unbroken view of the hills in front of me even when it is blowing a gale outside.  

We left his office with a firm handshake and the promise to him that if the holes that are bored turn out to show all is sound then he can go ahead!  So exciting and something else to strive for, to look ahead at good times after the stress of the build.    

Izzy canoeing

Colin used to be a canoe instructor and his son followed in his dads footsteps.  Sea Scouts is a place that holds many memories from his side of the family so we wondered, as Izzy is now quite a capable swimmer if she would care to join this club.  Colin took her down to see the children canoeing in the canal, dressed with all their water gear and wearing of course the life vest. She was fascinated and enjoyed it all so much.  Which puzzles us as to why, when Sara the group leader hunkered down to her level and asked if she would like to go in the canoe Izzy responded as she did.   Sara is so lovely and said she would find a vest to fit and she could experience this.  The answer was a very firm "NO THANK YOU"  when asked why by Colin she said she did not want to go into the cold water!  Of course the children must experience what it is like if the canoe capsizes in the safety of the group.  Colin tried to tell her that it was unlikely they would capsize, these children had been MADE to rather than it just happened.  Still no chance so another outdoor activity crossed off the list.  This child is certainly never going to be athletic or do things that take her out of her comfort zone ......... ah well she is lovely and healthy and enjoys life so we can't have it all.  

Such a delight

It was with great pleasure that a young, well not so young man as he reminded me came to visit last week.  Though I knew this young man since the day he was born time plays its tricks and I had not seen him for over twenty years!  I had a little idea of how he was doing as I picked things up when I would go to visit his brother but never actually saw him.  We had such a lovely time catching up with the years. He is now a grandad and I found it was lovely to talk about how his life has unfolded over time.   I think the last time I saw him he was in his early twenties!  The coincidence was that he  along with his dad, worked at the nursing home where I now live. Though the nursing home was pulled down and our new apartments were built in its place what a coincidence that he knew exactly where I now lived and walked the same gardens when he worked here.   It was a lovely start to last weekend and I am looking forward to meeting up with him again, hopefully we will not leave it so long again!  

I will leave you now to begin your day or go to sleep if you are one of our far away ph member and friends!  I shall get ready to begin my day now.

Please take care, the flying ants are such a nuisance right now and today also the weather is supposed to be very hot, something we do not tolerate too well with ph.  

I love and leave you all again with thanks for the comments and the likes for this blog (if indeed you did like it, maybe you didn't) though I hope not.  

Warm love to you all and thank you so much for being so supportive to me when I post something.  

Carole xxx

Colin just arrived home from the gym with the words "the gypsies are back" What horror as we will again see the mess and destruction and once again the children cannot play football on here again.  I hate it I really do.  I hate the mess and I hate how they destroy all the beauty surrounding them.  I despair, my day has gone from good to bad with that one sentence.  Last time, well every time to be honest the allotments are raided and all their bounty taken and the butcher had his shop broken into.  Whilst we cannot know for certain it was them that did this it follows a pattern.  All is well,  then the gypsies return and destruction and theft all around.  Gypsies are forced to leave within a month and all is well again, though lots of clearing up to be done first.  Hurting.