Monday, 5 August 2019


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

Busy busy busy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Much love to all, stay well and stay strong.

Carole xxx


  1. Thank you for your kindness and positivity!

  2. Glad to read that you all had a good holiday, and that all is well.