Well, the last posting may have been overdue, but I was certainly under-due for my ECP appointment.

It all got a little strange when I turned up at the accommodation yesterday, and found that no room had been booked. But it was when I arrived on the ward to be greeted with “Nice to see you, what are you doing here?” that I started to get concerned! It turned out that my appointment (which I had had to move from last Monday, had been set for next Monday! Fortunately there was a spare machine and I had the treatment anyway.

However, it didn’t all run smoothly as this morning there was a problem with the machine I was connected to, and after a bit of messing about, I was put on another one, so the process was delayed by an hour!

I had expected this to be the last session, but it seems not! As it is a while since I last saw the consultant dermatologist, I had an appointment made on conclusion of yesterday’s treatment. As I have had such a good response, I am having some more sessions, at six week intervals with a review in 4 months, which will be after another three sessions.

I was delighted to see fellow transplant patient Mark on the dermatology day unit. He has had a tough time with GvHd after his second transplant, and at the moment is on steroids to damp down his immune system, along with immuno-suppressants. Not a good state of affairs, so he is having a course of ECP as a less aggressive (and more effective) alternative. We had a long chat about the treatment – it has certainly been very beneficial for me – so I hope all goes as well for him.

Finally… I have always been interested in finding out about the various risks that have been likely to affect me, and one has been the CMV infection. One of the requirememts for my blood transfusions is that it should be CMV negative. CMV (or Cytomegalovirus) is a relatively common infection, that usually only causes problems in people that have impaired immune systems. I found an article about it in Monday’s Daily Telegraph, and with a bit of Googling, found this article which I have also added as a link.

While on the subject of common infections, another is the Epstein-Barr Virus, associated with glandular fever and possibly linked to some lymphomas. There is more information here. Although I am CMV negative, I am EBV positive, along with the majority of the population!

End of cytology discussion… Off to Chippenham this evening!

Onwards and upwards! (and I’ve just noticed – this is the 400th post!)

15 Responses to “Tuesday…woops!”

  1. Richard on 11 Jun 2009 at 5:51 pm #

    Well I am not counting and cannot see the counter Mechanical, virtual or Homo sapiens (Oh wise man).

    May I uncross now? As I am having problems with the car door, it wont open, and I need my digits to fiddle with it.


  2. Gillian on 11 Jun 2009 at 9:22 pm #

    400 that’s a lot of candles……….. excellent news!

    Bring on the firemen 😉

    Hope the doors are opening for you now Richard


  3. Richard on 12 Jun 2009 at 7:42 am #

    ahhh! ****ian……….it must be you, sorry about the confusion earlier.

    Do you remember the Dukes of Hazzard Well it is likek their Dodge with the doors welded up and having to ‘slip’ in through the window?

    Well it is nothing like that.

    There is a bonus though as I have to take my neighbour’s sister and family to Gatwick on Sunday she is going to lend me her RS4 Not very green but the doors work and there are lots of horses and not my petrol.

    This afternoon is climbing frame building as there was such fuss yesterday when Lewis came round after school to find it delivered in a large number of pieces.

    Ah if I am now allowed to uncross all may be well with the World whilst the Sun shines.

  4. Peter on 12 Jun 2009 at 10:55 am #

    I think there are grounds for tentative uncrossing! 🙂

    Ah yes, climbing frames! Ours sdaly have been dismantled (the poles rusted through at the bottom) but they are great fun – hope the construction work is complete!

    Can you take the car to Dorking?!

  5. Richard on 12 Jun 2009 at 6:06 pm #

    Done, up and played with but just a little tiff with next door’s niece over from Sweden/Edinburgh over who would go first on the slide………….a bargain from eBay slide, monkey bars, kitten bars, fireman’s pole and two decks

    Why Dorking? Is there a car crusher there?
    At the moment I am trying to find one of those ‘experts’ who break into cars in 30 seconds…….without using a brick 🙂

    Richard the pedestrian

  6. Peter on 12 Jun 2009 at 10:33 pm #

    Dorking… Door King – just a thought 🙂 Depends on the car – if you have those pull up buttons a bit of packing rtape can sometimes be used to pull them up.

    Slide sounds fun!

  7. Richard on 13 Jun 2009 at 6:19 am #

    No button.

    There is a company called Door King…………but garage not car doors 🙁

    Spent until late last night with the cricket for company looking for others who had solved the problem……….several suggestions ranging from hitting the door with a large mallet (I have a very heavy rubber maul ), disconnection of the battery (to be tried later this morning), asking the AA etc (still looking for a suitable ex or current crim.), destroying the trim (it might be cheaper to buy a new car as the door trim is quite elaborate) and leaving the car for 20 days as Audi is supposed to have an anti-tamper program on the deadlocks controlled by the central locking, sounds like a good plan if I can get some cheap tickets………or I could just play on the climbing frame.


  8. Richard on 13 Jun 2009 at 3:03 pm #

    The RAC is here……….I know a man who can’t !!!!!

    Not looking good communications going on with their technical people.

  9. Gillian on 13 Jun 2009 at 6:55 pm #

    what you need Richard is firemen….. I keep telling you!!

  10. Rcihard on 13 Jun 2009 at 10:55 pm #

    is or are? Well Gillian the truth will re-emerge, uniforms, big boots, not to mention the equipment they brought to The Resort…….Peter may still have the pictures.

    Anyway the RAC gave up after ‘phoning home’. Then a brain wave, yes me.

    I had followed suggestions and used WD40 after which the central locking decided to keep a grip on the door. Vivienne had decided to test her laptop bu tipping a large mug of green tea into it. Not a happy machine. But (good ol’ Dad ) the situation was rescued by liberal use of motherboard cleaner. Bing! Liberal spraying on and around the lock and hey presto it opened. Not with the door open the trim can be removed and more cleaner poured into the lock and ancillary controls. So far so good the door opens, the deadlock works all that is playing up is the automatic window shutting, I can live without that.

    So off to bed shortly with a clear conscience, not often we can say that.

    Good job Peter let me uncross digits.


  11. Rchiard on 14 Jun 2009 at 11:13 am #

    All done with judicious use of silicon grease. Even the auto window closure works again. 🙂

    Sorry Gillian no fireman. Any other requests?

    Peter I hope you are making the most of the weather and not doing too much, relax and recharge.


  12. Peter on 14 Jun 2009 at 8:14 pm #

    Richard, are you having an identity crisis? Rachard I could understand, but the others???

  13. Rchiard on 14 Jun 2009 at 9:03 pm #

    Just moving it on in celebration of being mobile again, well in my car.

    I have to say that I did enjoy the extra horses on the way back this afternoon especially on someone else’s petrol – 4.2 litres three and an half hundred horses all to the sound of a V8, Almost as good as my old Morgan Plus 8 but much more comfortable and cool.

    Who am I?


  14. Peter on 14 Jun 2009 at 10:07 pm #

    Drachir, Delighted it is all fixed!

  15. Rchiard on 14 Jun 2009 at 10:13 pm #

    Thanks Treep!

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