Sunday 9 September 2018

Sunday Summary


This stunning little sunflower is self seeded and growing in one of my hanging baskets that wasn't planted up this year, so it is nice to see some colour from it, even though it is high up!




We still have some colour in the rose garden although I didn't manage to get out in the garden this week to do any weeding as I had three appointments in London - Monday, Wednesday and Friday, and a friend came round on Tuesday. 


Friday I had an appointment with a new neurologist at the Pain Clinic at UCLH.  I got there and they didn't have me booked in!  Fortunately I had my letter with me, so they did see me, but I was not impressed as this is not the first time they have messed up.  He wants me to have new MRIs to check that my Chiari Malformation hasn't changed and to make sure I don't have any syrinx.  He also wants me to have nerve conduction tests, even though I told him I had some done not long ago by the NHS at the Royal Free - apparently they can't access those results?!  Which seems pretty crazy to me.  I also had to have blood tests - I had to walk to another clinic to have those done.  These tests are to see if they can find out what is going on  and he told to book the next earliest appointment.  Here I was thinking, I hope I can get the tests done in time, well I needn't have worried as the next EARLIEST appointment I kid you not is next year...but not early next year but a WHOLE YEAR away - end of AUGUST 2019!!  I was flabbergasted, and yes a bit distressed as well considering that I was first referred back to the clinic in MAY LAST YEAR and my pains and problems have just got significantly worse since then and spread.  I said they had to be kidding - I mean you just couldn't make this up could you?  How can they get away with this??  I feel so completely and utterly let down by the NHS.  I could say a lot more on this matter but will leave it at this for now.


Thank goodness for roses!







Today I stayed in bed for a couple of hours as I woke early and finished this book.  It was really good and based around 1830 and how physicians didn't wash their hands and thus spread infections from patient to patient - a bit of mystery and suspense thrown in with reference to modern day as well.  Quite different from some of her other books.  I am so glad my Dad introduced me to this writer.  



The melon that my son had grown was picked and we had it after dinner today.  It was very tasty indeed.



I have been for slightly longer walks this week and dogs have enjoyed it, although Percy seems much more reluctant to walk now...he seems to be losing his confidence and the last couple of days not quite right, so will keep an eye on him.  It is so sad to see him like this knowing how vibrant and energetic and full of life he was before he went blind.  

My body hasn't appreciated the longer walks, but I am going to keep at it. 

It has been nice to have sunshine and some of the mornings have been an absolute delight, clear and crisp.  A good time to go out, although have had to leave the walks until a bit later now that schools are back as the roads just get too congested otherwise.

6 comments:

  1. So sorry to hear about your continued experiences around your health and the disappointing wait for tests and such. My parents have the same issues, sadly it really is a postcode lottery. We have been blessed here with a wonderful service on all levels.

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    1. I think you get a very good service where you are, as Graham below can testify to...it is good to know that it can work, just disappointing and frustrating when you happen to live where it doesn't.

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  2. It's very distressing to read your experiences with UCLH. It seems hardly believable. I'm really not sure what else to say!

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    1. Very distressing Graham, I thought they were joking at first, it really is unbelievable, you just couldn't make it up though. Not much else to say about it.

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  3. It’s interesting and appalling that you and I are both getting the runaround for basically the same symptoms in different health systems. I’ve been chasing this scalene block with botox since December. We’ve maxed out our health insurance again, so that’s another $12,000 gone this year as for the past 5 years. I’ve joked with my son that my diagnosis will be made at my autopsy. I’m sorry you have such a ridiculous wait (for labwork!?) Can the Neurology office call on your behalf to the other clinic and stress there’s some urgency? xxxxxxx

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    1. It is unbelievable really isn't it! No the wait isn't so much for the labwork but to actually see the consultant/neurologist again to actually GET the results! Although the lab did tell me I can call the hospital to ask for the results, but ha, with receptionists who so far in my experience have been very unfriendly and unhelpful, I wonder what my chance of actually achieving that will be? Once I have had my scan done I will be calling them every week for a cancellation appointment!

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