Tuesday, 30 October 2018

AT LAST - NORMALITY

Stem cell trial for ph in America?

In the middle of the night I opened my computer to see a post from a ph patient who was jubilant to be told she was to be admitted onto the trial for stem cell treatment.  I know nothing more about it than that small post other than she went on to say that if she is given the placebo at the end of the trial, if it proves to be of benefit, she can then be given the real deal.  I am aching to get in touch with one of my trial consultants and ask if he has heard of this, particularly as he has been for the past nine months in America.  I know we were told it was a few years off yet BUT maybe there has been a break through, maybe this is the one.  If anyone knows anything about this please tell us as I feel sure we will all be longing to know.  I promise when I get in touch with my consultant I find anything out I will post it.

Since then I have had a post from somebody who had a similar trial in Canada, four weeks of stem cells and four weeks of placebo.  Sadly it dd not work and was not the cure we are all looking for  I hope this one has something different to offer, we live in hope.  

Hospital Visit

My first one for nine months and it went really well.  Robin my specialist said he was pleased and could see no more deterioration since my last visit so I take that as a great sign.  I had been so busy these past few moths and I did wonder sometimes if I was pushing myself too hard and it might be to my detriment but that appears to not be the case.  Robin told me to continue with walking as it is in essence like taking another med for ph as it helps to work the heart muscle and open the lungs up.  I will happily comply now that we are more settled.  He also said there were a couple of trials coming up that might be interesting for me but he wants to discuss them with Alex first on his return from America.  As you know I love to trial so I am waiting impatiently to found out which two he is talking about and will I be allowed to be on either of them.

Our hospital, Royal Hallamshire wants to begin a new panel, containing specialists, doctors and nurses and a ph patient.  I was asked if I would be that patientsso of course I agreed.  Not quite sure what it entails exactly as they are just getting it all together but  think it might be where ph patients can ask questions and be answered by one of the team.  Should be interesting, we shall see.

Our Emphasis Magazine arrived and I was happy to see that a date in May has been settled for our next conference.  Though too early to book ourselves onto it yet I was really pleased to see it in print and look forward to meeting up with many of my ph family again or even to meet new ph friends.

Our move

We are in and safely ensconced at last in our new home.  Though there are sill a few things to be dealt with nothing is too terrible that we cannot enjoy living here.  The garage still needs to be sorted, as does the study but everywhere else is all done and dusted so that we can really relax here now.  I have posted a few pics but to be honest you do not get the feel of the place on a pic or really see the quirkiness of the rooms.  Some of our family came to see it yesterday and really liked it so we both felt a sense of relief that we had done something right in all of this.  I must say my daughter did a great job of choosing drapes and blinds as everything matches well and looks just perfect to our eyes. I certainly could not have wished for better.


View from the study
Sometimes on bad days it can take quite some time to answer the doorbell so we decided to invest in the Ring pro.  This is great device that enables you to see who is at your door and to talk to them through your phone.  It will be a boon when we are out also as you can see and talk to anyone on your doorstep.  however as ever with me this turned out to be a disaster.  As we are novices with this device we did not realise that on my phone every time any movement was heard outside it tinkles.  There I was sat in my hall, {church} and a tinkling came from both my iPad and iPhone.  Realising what it was I went outside too try to turn it off.  Well as you must all know by now I am not computer savvy at all so struggled to turn it off.  As I am struggling to deal with it the tinkles resounded around the hall.  I was mortified.  In total it took me around ten minutes to disable it but in that time there was a big black cat running up and down our drive and every time our ring sensed it the tinkles would resound around the hall.  Lesson learnt and hubby has taken them off for me, trust me never to return.


Kitchen with dining room ceiling in foreground


Hall
The terrace
We would really enjoy a holiday abroad right now but to be honest that just cannot happen, still too many things to deal with but never mind.  The weather has taken a change for the worst so maybe it is time to snuggle down and enjoy the warmth of our home before venturing to far.    

Looking out on terrace

We have promised to take Izzy away so that she can walk up Mam Tor over the holidays and I am hoping that when they do that I can go and visit a couple of friends I have in Castleton which would be lovely.  I have also been promised that I can go around the museum in Eyam, last time we were too late as they had closed.  This is the village I mentioned in one of my blogs where the plaque was rife but they controlled it by not leaving their village, not even for food.  All was delivered and left a safe distance away and money was left for the said provisions in a jar of vinegar to hopefully kill the source of infection.  I hope to read more from the museum about this fascinating true story of self sacrifice by these people  They could have fled, unknowingly sometimes taking the plaque with them and spreading it elsewhere but they stayed and stuck it out to the end.  So many lives lost by rats carrying the plaque and it going to them in bales of material.  I need to read much more.

Izzy and her braid

Many months ago on an holiday away with her beloved granddad Izzy was allowed a braid put in her hair.  They can stay in for quite a long time and she must have had hers in for around four months.  One night when she was saying over with us as she brushed her hair out fell the braid.  You would have thought the sky had fallen in so upset was she.  She just loved that braid.  I am rubbish with hair so had no clue how to get her another one.  On telling Anna, my sons' girl she smiled and said she  knew how to do them.  As her father was Jamaican she has been braiding her own hair since a very young age.  We shall not tell Izzy and it will be a lovely surprise when Anna turns up with the materials needed and the expertise to have another one put in.

Izzy has loved us moving here next door.  We receive a text from her each day after school asking if she can come round for a few minutes.  Of course our answer is always yes and she turns up with a huge smile on her face.  Yesterday was no different and she enjoyed paying hide and seek with her cousins all over the house.  The sound of laughter was in the air and I knew we had made the right decision to live here.

Yesterday it was cake making here with Izzy and despite the calorie take I must confess it was really delicious.  
Our apartment has now been left in the capable hands of our tenant and she was delighted on Friday when she turned up and we showed her where everything was, how things worked etc.  I know it is in good hands and hope she enjoys living in it as much as we have.  We received many cards from our old neighbours and flowers and well wishes.  I know most of them will find their way to visit us here so I did not feel too bad.  Our next door neighbour cried when we last spoke but I told her she would get to know and like Brenda and I would always be visiting as I had been friends with most of the residents for many years.

Well all for now and I am looking forward to catching up with you all again, I know I have not been online as much as usual as we were so busy but back to normal now.

Warm love to you all and please, as usual a like or a comment will be lovely.




2 comments:

  1. Your home is beautiful, Carole. And it will be the perfect place to stay warm in the coming months - I hear that winter is planning to be cold.

    Exciting news about stem-cell treatment for PH. I look forward to hearing more about it.

    Pat Goh

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  2. Looks lovely, Carole, and it's nice to read that there's no further deterioration.
    T.

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