‘Ice Ice Baby’

Chilly or what. now we have snow!

Another busy week, which is good.  We had our meeting with one of the big pharmaceutical companies.  We were there in force.  Four of us from the Aspergillosis Trust and then there was our go to person from the NAC as well as a Trustee from the Fungal Infection Trust.  There were mixed reviews on how it went but me personally I was a bit deflated after the meeting.  I had drawn up an agenda which was dismissed more or less straight off.  I understand drug companies have to be careful helping patient groups so that they are not seen to be swaying our opinions but I did feel we were part of of tick box item for them.  Not really sure why they wanted to meet.  We will see anyway what might come from it.

One of the co-founding members wrote to Kensington Palace asking Harry and Meghan if they would be patrons of the AT.  A lovely letter of refusal was received.  Shame but hopefully someone else understands our plight now.

Not long now until WAD and the lovely people of GoodWork and done another video for us and hopefully we will have our poster as well soon.

Personally I have been feeling the cold.  I have titanium rods in both legs from knee to hip.  They both broke and shattered at different times due to one of the drugs I was taking for osteoporosis (would you believe).  Anyway went out in this chilly weather and when I got home I found it so difficult to warm up my metal legs.  The cold dosen’t just cause problems with the old lungs my legs as well.  All you clever people can tell me is it just my age (be polite) or the fact I have metal running through my bones.  Sat with at hot water bottle on my lap and read for an hour, hot bovril in hand and I was feeling better.  Any excuse to read my new thriller.

kill the angel

I have some card orders to do and today a neighbour came around as I had made a special card for him for his wife’s birthday and gave me a £5 to donate to FIT.  We have snow in Berkshire so I probably won’t venture out with my naff bones so will be able to concentrate on card making.

Don’t forget to support us on 1st February for World Aspergillosis Day.  Many of my friends and fellow sufferers are under the weather at the moment with nasty bugs and aspergillosis infections and I wish them all a big hug and hope better days are coming.

Take care. x

aspergillosis poster + FIT logo1 JPEG


2 thoughts on “‘Ice Ice Baby’

  1. Hi Jill, sorry to hear that you are unwell in the cold snowy weather. I do hope you feel better soon and that the weather warms up. Take care, love Sue XX (east Midlands group )


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