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Richard Cranefield
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Richard Cranefield
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There is going to be an HCL Patients Conference in Chicago. 

Details here...
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Richard Cranefield
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More details on the London HCL Patients conference...
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Richard Cranefield
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I was asked to speak briefly at a charity event earlier this week. After my spot one of the audience came up to me and told me that her father had Hairy Cell Leukaemia and that she'd not met anyone else that had it.

Apparently he was diagnosed when he was 38. 

He is now 80!!!!

Some hope for us all there then.
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Richard Cranefield

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A few new additions to the hotel set...
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Oh to have this much spare time...
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Hi Everyone. When I set up this community it stayed pretty silent for a while and I wasn't sure it would create interest. Returning here to find 20 people is amazing.  

I'm not on Facebook but i'm sure there's  big community over there. I still think 20 is pretty good going for a disease that hardly anyone has one a social network hardly anyone seems to use.

I hope you're all having an ok time with treatment or are finding your way through post treatment life.

 
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Stuart Pearson's profile photoRichard Cranefield's profile photo
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+Stuart Pearson Hi Stewart,

I've just watched your videos and you seem to have had a very similar experience to me. Although i think I prefer the injections in the arm that I had to having them in the stomach.

Your list of drugs brought back memories and in the Weeks 3-4 video my wife an I cheered when you appeared back in your kitchen.

Your bloods seemed to recover well which is good. I had the fatigue for about a year before I really felt right again. You just have to roll with it, it does go eventually.

I'm fine and having regular 6 monthly checkups. I still have tiredness but i think that's nothing to do with chemo and everything to do with renovating a house and having a 4 year old.

Life goes on. :) 

Best regards,

Richard
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Richard Cranefield
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Not a treatment for HCL but a promising development none the less.
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Just a note to let you know that there are a few spaces still available for the Shine Work and Cancer workshop in Bournemouth. The workshop is being led by an expert on work and cancer (who knew there were experts in this?!) and is suitable for people who are returning to work after treatment, thinking of changing careers, or actively looking for a new job.

I know it's in Bournemouth but if anyone is interested in attending, we may be able to assist with travel costs - just drop me an email and we can chat!

Poster is attached!
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Richard Cranefield
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Hi All, I just had this land in my InBox from a Macmillan forum...

Some info about the  first hairy cell leukaemia (HCL) patient seminar in Europe. London Seoptember 20th 2014 The Royal Marsden in Partnership  Hairy Cell Leukaemia Foundation is hosting this

 September 20, 2014

 The Royal Marsden Education & Conference Centre

Julian Bloom Lecture Theatre

Stewart’s Grove, London SW3 6JJ

 

  Contact

For further information or to book a free place, visit

www.hairycellleukemia.org/patients/patient-seminars   

Please RSVP by 1 September 2014


Patient Seminar Agenda

12:00 PM       Networking Lunch with Patients & HCL Experts

12:50 PM       Welcome to Patients & Guests,Brian Friedman, Hairy Cell Leukemia Foundation
 
1:00 PM         Historical Perspective of HCL
Daniel Catovsky, M.D., The Royal Marsden
 
1:15 PM          Latest Treatment Opportunities for HCL
Claire Dearden, M.D., The Royal Marsden
Francesco Forconi, M.D., University of Southampton
Enrico Tiacci, M.D., University of Perugia
 

1:45 PM          Question & Answer Forum

3:15 PM          Quality of Life / Patient Data Registry
Monica Else, MA, MSc, The Institute for Cancer Research
 
3:25 PM          A Patient’s Perspective

3:50 PM          Closing Remarks
Brian Friedman, Hairy Cell Leukemia Foundation
 

4:00 PM          Adjourn
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A while after my treatment I went to a one day event run by a very small charity called Shine. (Nothing to do with the fundraising walks!)

The day was massively inspiring and since then I've been involved in helping them as much as i can.

As a charity +Shine London is aimed solely at helping young adults, that being people between 20s, 30s, and 40s living with and beyond cancer.

Being told you have cancer in your 20s, 30s or 40s brings its own set of challenges.  Isolation, fertility, returning to work, dating, looking after parents and children, finishing your education or building your career are tough issues.  Too old for specialist help aimed at teenagers but too young for standard cancer support initiatives, you might easily feel that you are alone. You're not!

Our vision is that every adult in the UK diagnosed with cancer in their 20s, 30s or 40s can access the help and support that they need in a way that suits their lifestyle, and are a part of a confident, supportive and empowered community of young adults with cancer.

Our mission is to provide tailored information and peer support for anyone diagnosed with any cancer in their 20s, 30s or 40s through a range of activities including lunches and drinks evenings, beach walks, multi-day getaways, workshops, online networking, and mentoring. 

We have local groups that have regular meet ups after work for a tipple and a chat and are holding a summer picnic in Surrey in July.

if you want to know more you can check out the website...

http://www.shinecancersupport.co.uk/Pages/default.aspx

Here is a review of an Escape we ran early this year...
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Richard Cranefield

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NAB must be around the corner here is our new promo...
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Dad, Photographer, Broadcast Solutions Architect and sometime baker.
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I travel too much: Vegas once a year. Amsterdam, Sweden, Paris and London every month. Of all the places I eat this is the one I enjoy most. A relaxed atmosphere, consistently good food and an awesome beer selection. On the high street of a relatively sleepy town outside Amsterdam this is by far the best burger place I know. The Spanish burger is good but the Ereburger is fantastic. Drink Affligem blonde with food then finish with La Chouffe.
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