Tuesday, 30 October 2018


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

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.

Wednesday, 3 October 2018


I was so saddened to read a post a couple of weeks ago from Serena Lawrence who told us she was dying,  She meant imminently  as the doctors told her that the medicines she needed were actually poisoning her body due to her taking different and more meds since she developed PVO disease.  I hoped against hope that she was wrong, that she could fight it as she has fought her illness for five years.  Sadly it was not to be and we lost her.  Serena was a huge voice for ph, an amazing writer and a beautiful young lady of just 30 when her disease took her a week ago.  Serena was the creator of The PHight or Flight Project and wrote her blog talking about ph and also the blogs of many other sufferers.  That she was spunky came across, that she was a fighter also came across in her blogs.  We have lost a truly inspirational young girl to ph and it is too cruel a blow to our communities.  Serena lived in Canada but it is true to say that in the world of ph she was known across the globe.  My heart goes out to all her family and friends who have suffered such a cruel loss.  She will be missed so much by so many.  R. I. P.  Serena and thank you for all your words of wisdom and telling it how it really is with PH. 

Are there really any ups to be had with PH?

There is no doubt it is a devastating illness.  It takes so much from us, more than the eye can see.  It leaves us so tired it is hard to put into words.  For sure i had never known such tiredness before being hit with this disease.  We lose friends as we can never be relied on to actually follow through with any plans we have been brave enough to make for the future.  Heck we cannot know how we will feel from one minute to the other so how can we be expected to know days in advance.  This disease slowly but surely suffocates us unless we are fortunate that the meds we take hold this at bay.  It is never a given, for some they help, for others they don't.  I could go on for pages about ph but I won't, you know how it is, you either see it in the face of a loved one or you are suffering from it yourself so I will answer my own question Are there any ups to be had with ph?

Of course I can only speak for myself.  For me though since being diagnosed I learnt for sure who my real friends are.  They have stood by me, helped me and been there for me when I was truly unable to do anything for myself.  I have learnt which members of my family keep stress away from me and which are happy to throw more and more stress at me too.  This knowing we are told stress is a huge killer with ph.  I have learnt to enjoy each day and be grateful for them, no matter what.  

I have learnt first hand that for sure we have the most amazing teams taking care of us.  In the midst of all the NHS cuts here in the UK I can honestly say I have not been affected.  My care is second to none as I feel sure are my fellow ph brothers and sisters.  It is nice to know that there are so many researchers out there doing there best to find us a cure.  If I had not had ph  all these are things that I would have been unaware of.  I took my health for granted as most of us did.  How could I have ever known that from such a devastating illness I would make friends with ph brothers and sisters across the globe.  

I have been fortunate to have met many of them from the UK as we meet up at our conferences and share stories and learn what is new on the horizon.  So many friends and none of them I would ever have met had I not had ph.  Ph teaches us to really care about fellow sufferers.  We come  together as a community and help to give support and advice to each other.  Though we know we will never see most of our ph family in the flesh we are united in one goal, to do our best to beat this disease. 

PH has taught me to be positive, to not let go.  It has taught me that negativity plays no part in m life.  I will not give in and will fight while I have breath in my body.  I focus on living and not dying.  Because of the way this illness takes away our stamina from time to time it has taught me to take up hobbies that I did not have time for before.  A bed day can be spent doing research, reading books, writing letters etc.  I am determined to make the most of each day whereas before I thought  my days were endless, I took them for granted.   So ph has taught me to be thankful for new days that dawn, new days to live and enjoy.   

So of course I wish I had never known ph existed yet alone had it but I always try to stay positive and look for a plus in any minus situation.  In this instance yes, there are plusses  in having ph.  All my ph family and friends are plusses and I thank each and every one of you for being there when I have reached out to you.  

Getting there.

OK at last we are really almost there with the house.  It has been cleaned within an inch of its life and all windows, both in and out and architrave has been cleaned and polished.  Our floors have been swept and washed five times in total and I have even begun to move some things into the house. For me it is much  better that each day we take down a few more things that can be nestled in their permanent place now and forgotten about until the final move in day.  My daughter has dealt with everything to do with curtains and blinds, choosing them, walking around with the guy and deciding on the fabric etc.  To be honest I cannot remember what will go in which room and I care not a jot.  I know my daughters taste and know it will be fine.  Whereas many years ago before ph I would have thrived on things such as this I now shy away from them.  They make my stress levels go through the roof and it is just a house, not worth getting more poorly for.  I am still delighted with it though and I promise pictures will be here soon.  Tonight as I looked out of our bedroom window just before we left I was enjoying seeing cows in one field high up across the bank and sheep in another.  The sound of the animals comes across on the wind and I know I will enjoy living in such an idyllic spot.  


Typical that today just before we left for school, she is staying with us for three nights, her coat zip broke.  No time to go down to her house to collect another coat so I just had to hope the heavens did not open on her when she was in the playground.  All was well fortunately and meanwhile I went into town and bought her another new coat.  To be honest I was planning on getting her one for the winter as she had had a growth spurt and shot up.  As she was not with me I was unsure of which to buy but my choice turned out to be perfect, she loves it. so I "did good grandma" as she told me!!!

This year I had hoped to have got away without getting those Lego cards from Sainsbury's  Last year I swore it would be my last as I dealt with two books for the kids so this year I just handed over the books of cards and said they could use them however they liked.  Was a blow when I discovered one of the kids was in the middle of doing a Lego book!  Urghhhhhhh so here I am again trying to sort out swaps and begging for extra cards when I shop at Sainsbury's.  I fear I will not complete this one this year but no matter, next year NO MORE LEGO BOOKS FOR SURE!!!!!

Right I aim to get this out tonight as so many people have been asking if I am OK as I have not blogged.  The house has taken up all my spare time.  Thank you for your concern, it warms my heart it really does.  Still waiting for the reuses of my colonoscopy but no news is good news and still waiting for an appointment to see a gastroenterologist so I can have my ferritin infusion, other than that tired but doing ok.  

Now I must go and make sure Izzy gets her teeth brushed correctly, though she does the allotted two minutes I know she sometimes brushes one side more than the other!  

Warm love to each and everyone of you and please either click like or comment.  It matters, it really does. 

Carole xxx