Update on my trial and other weird things!

The visit to discuss my acceptance onto the trial for tocilixumbab did not go as we planned.  It is always very important when going on any trial or study to be honest and answer all questions correctly.  In this instance I did all that, ticked all the boxes but then told them I have been suffering from a few bouts of uti's.  The doctor taking down all my info went into more detail and said it may be that I won't be able to take part.  The reason being that apart from the uti's I also have yearly colonoscopies to remove polyps just in case they turn cancerous.

Now this drug I was hoping to trial works well for people who are on it who suffer from rheumatoid arthritis without too many side effects.  As for me well......... the medicine lowers the white cell count in the body so people are more susceptible to infections and if you are pre disposed to cancer amd uti's then his would not be great.

We need our white cells, our army, to fight infections so if there is somebody who already has certain issues regarding infections then for their own sake they will not put them at risk.  Still waiting to hear as they are talking to Papworth but I believe this will not be a trial for me.

We did discuss another treatment.  I have touched on it before.  This is where they actually burn the ends of the nerves in some parts of the lungs,  It is not a cure but there is the hope that once they are burnt they stop some of  the hypertension.  I believe the operation takes around an hour.  Only five people have had it in this country.  It is very much a last resort, very new, very novel.

I am certainly too well right now to go down this route.  I have read some people abroad have died about three  months after the op due to sepsis and other things so even if I was allowed it, which I am not, then it wouldn't be for me.

Holiday!

Yeahhh. We leave at 3.00 in the morning to take our taxi to the airport.  Though we rarely take the early flights this time we felt we should.  It means that we can be in and settled by early afternoon and this is very important as we have so many people we wish to see and so many bike rides, mountain walks etc for Colin.  I can't begin to tell you how excited I am to be going back to where we lived.  We made so many really lovely friends and we're fortunate not to have lost them since we left.  Packing is done so we just want our day to go well, sleep a little and away we go.  Bedding changed nice and fresh for our house sitter We just have Izzy to collect from school, always a joy and Colin will take her for her swimming lesson.  

With regard to packing.  I take a very easy option.  It is that time of the year when some of my summer wardrobe gets donated to charity shops, no call for them here now our weather has changed.  So here is what I do.  I get all the clothes I want to donate to a charity shop together, there is nothing wrong with them but will want a change next year, and I take these as my wardrobe for my holiday.  At the end I wash them and donate to charity in Javea.  Saves me carrying them back home and I come home to a wardrobe tidied out ready for winter clothes.

My INR clinic

My INR is very low due to all the antibiotics so my warfarin clinic came up trumps.  I attended the clinic at 8.20 and received my call from the phlebotomist at about 10.00 . She was concerned as to how low it was, changed my dose, asked me to have it done is Spain and then wished me a lovely holiday, and people knock our NHS,  I love it.

This is a very short blog as since I last wrote I have done very little due to hospital visits, two to my local one and then my wonderful Hallamshire.  I missed seeing Gem Cousins but we are sure our paths will cross again!

Now the awful woman that posted comments on my blog has been deleted. Well I hope so.  I deleted her remarks and then a lovely friend reported her to the admin side of Facebook so I hope to goodness she does not turn up again.  I had to smile at my lovely friend Mary who was very concerned and asked it if could be Roy's granddaughter.  Now I know she likes horses, she kept a couple but in fairness to her there would be no way she would post pictures of herself in such a compromising position.  It made me smile though at the thought.  So hopefully this is the last time this awful person will be mentioned in my blogs.

I think the fact I could not block her of my Facebook page is that I was using my apple iPad.  Whilst there is much that can be done on an iPad there are some things that cant and in this instance it only showed about ten people with the name Horseylady.  She no longer has access to anything I write hopefully so I can breath a sigh of relief.

So there it is, very short blog.  Thank you all so much for reading and for clicking the like icon, it means such a lot.  No ph news on here this week but i shall search and see what is on the ph media in my next blog for the newbies, and indeed all of us with ph.  

Warm love to you all

Carole xxx