Christmas News

Hello everyone.  I do hope that your festivities went well and that you managed to stay as strong and healthy as we with ph can do.  It was a pleasure to read that doctors at the hospital allowed

Kath Graham home for a few hours on Christmas day.  It seems the infection is getting under control but care needs to taken to ensure her new heart and lungs remain as healthy as possible.  Kath does much for us to make people aware of just how much organ donation has helped her live a full life. So pleased she got to spend a few hours with her family and the new puppy.    

My clinic                                                                                                                              

Two days before Christmas I needed my warfarin and my full blood count so off we went to the hospital, walking as the car park is generally full.  We took our time and Izabelle was so thrilled as her grandad gave her a grown up umbrella to carry.  It doesn't take much to please this girl and so off we trotted.  The rain was bad but the wind was even worse, blowing the umbrellas inside out.  Izzy just loved this as grandad showed her how to turn the other way and hold the umbrellas out where they corrected themselves.  I went on ahead of them at a certain point as I wanted to get booked in.  The clinic was not full and my wait was only a short one. I have learnt not to make an appointment but to just turn up and it works.  Of course all the staff know me as I have been attending over five years so it is always quite a good time really.  

On booking in I took a seat.  Colin and Izzy has not arrived and I was thinking i would have had my bloods done before they did at this rate.  I sat next to an elderly lady who was telling me that her husband had died on Christmas Eve over twenty years previously.  They had just had a grandaughter two days earlier and he was sitting on the sofa holding her.  He turned to his wife and said when she is older I shall sing to her.  He had a great voice apparently.  He then handed his grandaughter over to somebody saying he felt unwell and collapsed and died!  I was so saddened for this lady as the time of the year that should be joyous was forever tainted.  However she does have such precious memories of a young lad she met at school when they were both five, of growing up together and a friendship that grew.  When they were around ten years old he told her that when they were old enough they would marry and have ten children.  Conscription came about and off he went to the army and they drifted apart. However on his return he found where she was and they married.  The ten children turned out to be just one, a very much loved daughter.  

On hearing her story it made me be thankful that despite my terrible condition i am still here and still determined to fight for a better life and a cure, trialling new drugs as I go along.  We cant waste days feeling sorry for ourselves can we when none of us, even healthy ones, know what is around the corner.  This was a fit and healthy man, always biking or hiking, not a lazy sloth and so his life ended so soon.  Don't let it happen to us.  Fight with every ounce in your body of determination.  I have a lot of living to do yet as I know you all have.

Family time

December 25th was such a lovely day for me as I had both my children and my darling Izzy around along with Danielle's’  boyfriend Chris, a lovely man.  Both my children have lovely partners, it hasn't always been so and so we have encountered problems along the way but hopefully  they are both set on a path with people walking by their sides that love them and want to do right by them.  I am so happy right at this time, long may it last.  So the day was a joyous one, with much laughter and much love around our table.  It is a day I shall remember for ever and look back on it with such lovely memories.  

Colin took some pictures.  We rarely are all together at the same time.  I really love that we have these and we laughed a lot whilst they were being taken as Colin had to run so fast to get settled before the flash came!  Haydn's' beautiful girl friend Anna is not on them as she was with her mom for the day, travelling by taxi to see my son once he was home again.  We shall print some of these off later as despite hoping to do it on the day the time just flew by too quickly.  

So sad. 

Izzy rarely sees her dad.  His choice not ours.  However he had cancer a few months ago and it seemed to have all been removed so it was with horror that we heard it was now in his stomach.  Though I don't believe he was the right guy for my daughter and certainly not a good father to Izzy as he rarely bothers to see her he is still her dad and my shock on hearing this news was huge.  I do hope the chemo and radiotherapy cure this young man.  He has just had his longed for son and I hate the thought of him no longer being in the world.

The Rain Came Down

Goodness me have we had some rain here in West Yorkshire.  There are floods all along the calder valley.  The lovely canal and river walks I used to love to take have been badly flooded, with  people walking up to their thighs in water!  Certainly I have never seen it like this in my lifetime.

Two members of our family are with us now and they drove up from Poole, a lovely drive until they came off the M1 and then the detours they had to take to get here are quite unbelievable!  However they are here now, safely ensconced and we are so looking forward to spending quality time with them.  As they live so far away this time is so precious and special.  We are so pleased that they were happy to make such a drive up to us to spend this time.  Last night after a lovely meal that all approved of very much we all sat down and the memories came flooding back of earlier days, past years etc.  Such a great time but I had to leave them as my bed awaited me.  They totally understand this and are happy to see me trot off and continue their talks with just Colin playing host.  This time is lovely for our old friend Roy who lives above as he comes down to share a drink and a natter.  His family went to Scotland to celebrate Christmas but he knows we are here and he is welcome.  

I went to the Boxing day sales as I just wanted to get out of the house for a while and mooch around!  The shops were not overcrowded and I managed to pick up two so cute sleep suits for a friends baby, a lovely top for my daughter and pjs for Izzy so all in all I was pleased.  Don't you think these sleep suits for a new born are the cutest things!  So pleased for the family of this child who had an anxious few weeks whilst tests were carried out on this little one in the womb as they feared a problem.  All tests now completed and he is a healthy little baby just waiting to grow big enough now for birth, really a pleasing story.  

So this blog is rather boring.  That is because we are all so tied up with our families and friends at this time of the year we don't seem to live a “normal life”  I haven't seen the news and not watched the tv for a few days except…… Masterchef 

One thing I must say though for those that are lovers, of Masterchef as we are.  YEAHHHH Mark, well done young

man for becoming the winner of this competition.  I loved him from day one and said in an earlier blog my money was on him.  He just let himself down once in the competition when he made a salad in one of the rounds , a very definite mistake and indeed he was told off by the judges.  We did too screaming at him when he was making it that he was so wrong to do this.  Next year I bet he is back actually judging the meals as they do.  So pleased, it really made my day.  Well done young man and he will go on to be a top chef without a doubt.

Trial drug

Sadly I am feeling worse day by day.  My breathing is definitely  worsening.  Now is this the trial drug or my ph which we knew was getting worse before I began the trial.  We really don't know but my appointment on the 6th of January can't come soon enough!  Will post what is decided after I have seen my specialist.

Thank you everyone

Our numbers on this group are steadily rising.  So pleased that they have found us, one newly diagnosed patient being told of this site by her hospital who directed her to us so well done all of you for the love and care you show all the newbies on here.  That even hospitals are aware of us and all we all do for each other is such an accolade.  Anthony Roe who began this group did such a great job.  He would love to be seeing how well it is doing. You all deserve a huge pat on your backs. 

The new year is fast approaching so let us all continue to fight but to help and encourage each other on this site as we are doing.  The fact that we have so many on here and we generally all get on so well and feel a very real friendship for each other is amazing.  I am so proud to be part of this ph family  Go into the new year with hope, real hope for us all.  I forever believe we are so close to a normal life once again.  

Go well everyone and much much love from your ph sister here in West Yorkshire amongst the floods!

Carole xxx