Comment

Comment by Celia on March 20, 2014 at 9:49am

Looking forward to seeing you again, Polly.  I am sorry not to collect you from the station but my knight is on a Crusade right now or he would have picked you up as last time.  Safe journey, thanks for making the trip.  It's easy for me - just sit here and wait for you lovely ladies to arrive ! x

Comment by Polly UK on March 20, 2014 at 7:55am

Ha ha, my knight is escorting me to Paddington station (I'm not very confident getting across London) and will spend the day in London. Look forward to seeing everyone and thank you Celia for the invite and kind hospitality xx

Comment by Celia on March 20, 2014 at 7:04am

Knights are good aren't they - another knight is delivering his damsel here then off to the local hostelry.  See you on Sat - I have sent you an e mail on this site.

Comment by Valerie on March 20, 2014 at 6:56am

My knight in shining armour (husband) has said he would drive me down and visit the golf course! So look forward to meeting you all. Thank you for the invite and support shown so far. See you Saturday. 

Comment by Celia on March 20, 2014 at 6:45am

Anne - go into your settings and edit your photo.  Sorry you ended up in a Yoga position - a rush of blood to the head can be good for you..............

Sorry you can't make it, Valerie, but stay in touch.

Comment by Valerie on March 20, 2014 at 5:00am

Really appreciate the invite to lunch/meet up but sadly hadnt realised how far down the M40 you were. Very interested in support group meetings so please keep me informed. 

Comment by Anne Louise on March 19, 2014 at 10:25pm

I'm very annoyed with this site!  I tried posting a new discussion and after writing a ton I clicked "add" and it disappeared.  Then I decided to add a picture to my profile, and as you can see it's upside down.  I can't replace it or turn it around.  I think it's time to call it a night.

Comment by Celia on March 19, 2014 at 2:58pm

Claire - thanks for that - say 5 mins each topic. This is just a sketch of what we might discuss before lunch and more relaxed nattering - hope OK.

Comment by claire on March 19, 2014 at 11:52am

Sounds a great list but how long have we got?? I'm particularly interested in the medicine that people have taken and any benefits/side effects. On going research is also really useful as it might give us all hope. 

Comment by Celia on March 19, 2014 at 11:24am

Jules - re: agenda - haven't had any suggestions yet, but how about if we talk about

- meds /effects/improvements/weight gains ?

- dermatology visits, frequency, level and type of monitoring

- improvements felt to be linked to diet

- how to combat low self esteem/anxiety etc

- wigs/hairpieces

- current research - stem cell ?

Just brainstorming on my own whilst cutting the grass...........

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