Sunday 17 January 2016

Another trial. Let's hope it works!

My hospital visits post trial drug are now over they have decided.  Instead we have discussed other options as my levels are rising and we want this to stop!  I was so surprised then when I spoke to my specialist who said there was nothing else for me with the already established drugs.  Other than going back on the line which right now we do not feel I am bad enough for that.  He saw by my notes that inhaled iloprost did little for me despite my being on two other therapies.  I was a bit gutted it was fair to say and then he went on to say.........

We have three other trials yet, you could start on one!  Yeah.. He wants me to wait for four weeks and then go back for tests and talks to see which trial will be the most favourable one for me. We know there are certain criteria to be filled before we can do any trialling.  So we shall see.  On talking to Paula one of my ph friends she discussed a particular one I may be interested in.  I promptly forgot it once I was home as I was so exhausted.  So it was lovely then to open my Facebook and to see that Paula hadn't forgotten and had tagged me into a post about this particular trial, I am not going to post which one as I don't want to rock the boat, after all we have not discussed any of the trials yet with my ph doctors but I promise you that as always when I have spoken to them I shall post and keep you all  informed.

I am so grateful to Paula for sending me this info.  She herself is trialling and has been trialling a drug for three years.  She seems to be doing pretty good on it and it may well be that it will get licensed.  I do hope so.  The more the merrier in the world of ph.

Alan Rickman

How I loved  this guy.  I went to see him when he did something called An audience with Alan or words to that effect.  He sat on the stage and we sat in the auditorium and we could throw questions at him and he replied.  One thing he did state though was that he wouldn't discuss his personal life other than telling us where we could get the best curry in Leeds!  He talked about his acting career and I was so thrilled to be almost touching him.  He had so much charisma and charm.  So I was gutted to read today on Facebook he had died.  I wrote on many of the posts how sad I was but then I decided to see online if it was in the paper.  No it wasn't , not right then.  I then read that it was a spoof, yet another of them saying somebody had died that had not,  As was the case with David  Jason to oh the relief!  He wasn't dead!  Then I read with horror that indeed yes he was, the spoof was so wrong.

How I wish people wouldn't post spoofs, why do they do it, it certainly doesn't make sense to me.  So we have lost another great actor.  Such a huge loss to our world of theatre and television.  An amazing guy who played many different rolls,  R.IP. Allan, you will surely be missed. His wife must be very lonely, they had just married after being together over 50 years. Had no children.  He kept a low profile in his private life.  My thoughts go out to her and to all who loved this guy.

Change in organ donation 

At last the government is doing something about people dying and their organs with them too.  I was always an advocate for the opt out of donating organs, seemed sensible to me.  However our government felt otherwise and we carried on with the total waste of life through lack of donated organs.  Now though some sense is to be had of death and the sheer wastage of good healthy organs as the government is passing a bill through whereby if a person carries a donor card then they go ahead and the family cannot object.  Up to now despite a donor card being found if the family objects the donor is not listened to.  Surely at last sense has prevailed and we listen to the last wishes of the donor.  I feel sure that when the grief has subsided a little even those that would have objected will find some comfort in knowing part of their loved ones is working strong in the body of another .

Snow snow go away!  

In this case ice but the snow is sure to follow.  I wanted to try a small walk as my breathing has improved a lot since coming off the trial medicine. All kinds of things go through your mind such as ..... has my breathing improved a little because the trial drug pushed back my levels, even though it made me feel terrible? Or maybe it is just that I could do very little once the trial drug kicked in that now it is gone anything feels better than I did whilst on it.  Who knows but away we went to the canal and did a short walk.  I had on my walking boots but no crampons.  It seemed a little overkill for what we were planning on doing,  Oh I was so wrong as when walking down a slight slope on the ice my feet slipped.  Colin was holding my hand and tried to stop me but to no avail.  Down I went and we both heard the CRACK.  I lay there in shock and Colin said he heard my wrist crack.  I too felt there was something bad happened as my wrist had hit the hard ground twisted somehow and we both feared a break. 

Now breaking bones is bad for anyone but as we with ph cannot have anaesthetic without suffering severe complications we were horrified.  I know that mostly they just put it in a cast but I also know many people who have had to have operations and metal pieces put in, my daughter for one after slipping on the ice.  Anyway Colin managed with difficulty as the ground was slippy to get me up.  I said I would be ok and off we went to complete our walk.  My wrist felt painful but I could move it so knew it wasn't broken,  How  fortunate for me.  It began to hurt more as the day wore on and by the time it was bedtime I was using pain killers and wondering if I might have chipped a bone.  Woke this morning with relief to a wrist that feels so much better,  I managed to wash my hair with my sore hand and wrist so the relief is great.

We are now preparing for a couple of nights in Whitby.  Let's hope we get over the moors,  A shovel will be put in the boot of our car for sure and plenty of warm clothes and yes ....... the  crampons for my boots!  We are not risking another accident like that again.  

What are they thinking of?

For many months now we have campaigned to keep our A and E as there was talk of amalgamating it with Huddersfield,  Now though the distance between the two hospitals is not great being only around six miles that six miles is a bad one.  The stretch of road always seems to be clogged with so many cars, always hold ups for many many minutes.  Selfishly I wanted to keep ours as it is just around the corner from me and for the first year of my ph and my Hickman line it was the first place I went when trouble occurred.  They would then ring my ph team at Sheffield and either get me on the right track or an ambulance would take me to Sheffield.  

Petitions were signed and reasons for opposing this were put forward to the powers that be and at last it seems that we may be keeping our A and E.  On hearing this  we thought RESULT but then.....we heard that it seems they are still  going to amalgamate the two and get rid of Huddersfield one.  This means that the boot is on the other foot and now they will have all the same objections as we did.

What bugs me so much is that we send so much money abroad to countries that admit they don't need the money as much as we do, thank you very much UK.  We did it for a country that had been flooded, it may well  have been Slovakia, but don't quote me on that one as not quite sure if this is where we sent it to.  On receiving our money they said themselves they were shocked to receive it as our flooding was greater than theirs.  Our own valleys are flooded so badly it will take years to recover from and lack of money is a problem.  The same goes for hospitals.  We close them through lack of money or lack of nursing staff as we can't afford to employ people to work in them. 

I have no problem with helping countries anywhere in the world.  I feel we should, if we can, help others less fortunate than ourselves.  What I do object to is how we just seem to send it to all and sundry who have more than us but the corruption in their countries is  great.  Lots of what we send end up in the coffers of the corrupt governments and not where we intend it to go, to help the ones that need it badly.  So it goes on.  We send money when we badly need it ourselves.  Our hospitals are closing, schools overcrowded, not enough houses, quite where it will end I do not know but it is scary.  

If the money we have in our coffers was looked upon as money in our wallets I think the government would think differently.  If you have ten pounds in your purse and need to pay bills or put food on the table then spend the ten pounds "in house" so to speak.  Set your own house up safe and sound and then, when you and yours are sorted then and only then see what is left in your wallet or purse and help the others that need it. What we wouldn't do is send our ten pounds away to help others ignoring our own needs and so leave us with nothing to pay  our bills or put food on the table!  

We just don't seem to look at it this way and spend money madly whilst we ourselves are sadly lacking in the things we so badly need for our own country,  

Well I know I shouldn't talk politics and maybe I should delete this but no I won't, in this instance I shall say what is on my mind.  

This is only a short blog as I now need to pack my bag ready to set off for Whitby,  Pray that we are not blocked by the snow anywhere.  This short break will do us good as on our return we will have Izzy for eight nights.  How exhausted we shall be after that.  

Go well everyone and let us keep up the good fight against ph.  How I am looking forward to my next hospital visit to discuss my next trial, let's hope it is a good one!  

Love to all and many many thanks for bothering to read my ramblings.  xxxxx





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