Wed, 10 Mar 2010
Rarer Cancers Forum

Index of stories from patients or carers
These stories are written by people with experience of a rarer cancer. They're written in the words of the patients or carers, so that you can understand just how it was for them.

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Guidelines for writing stories

We welcome your stories, and to help you to write yours, we have provided the following guidelines for topics you may like to include in your story:

  • What were your symptoms and for how long had you had them before seeking help?
  • Past significant medical history- any major illnesses or long term conditions?
  • How did you seek help?
  • How rapidly were you diagnosed?
  • Were you referred to an appropriate specialist?
    Private or NHS? (was it necessary to go private?)
  • Duration as in-patient and effective discharge instructions?
  • Follow-up:
    Help to cope with aftermath: diet, speech therapy, weight loss, stoma care, wound care etc.
  • Counselling offered, complementary therapies etc., and by whom?
  • Were you given a phone number if problems occurred particularly at weekends or evenings?
  • Were your relatives advised of your care and response to emergency situations?
    Any unmet problems?
     

 
Additionally, as a separate section, it would be useful to us if you would provide the following information. This could help with future research into less common cancers.

Obviously this is completely optional, and not necessary for the submission of your story.

  • Your location in the country (city, county).
  • The hospital(s) you were treated in.
  • Whether other family members (state relationship) have had cancer and what type.
  • Your place of work or former place of work, and any known exposure to carcinogens.
  • The type of work, and your approximate years in it.
  • Your home environment, (town, rural, type of heating - gas, oil, solid fuel etc)
  • Lifestyle information e.g. smoking, exercise, normal weight, etc.

You can submit your stories to the co-ordinator by email or fax:

  Latest News
NICE Appraisal - Gastric Cancer
Wed, 13 Jan 2010
Patient Experts needed for NICE appraisal of gastric cancer (advanced) - capecitabine
read article
URGENT request for your help!
Wed, 13 Jan 2010
We are putting together a series of booklets called "Patient Experiences" and are seeking patients to fill in a short questionnaire.
read article
NCRI Clinical Studies Group
Tue, 12 Jan 2010
The National Cancer Research Network is recruiting patients and members of the public to join their NCRI Clinical Studies Groups.
read article
Request for Patient Stories
Tue, 12 Jan 2010
Freelance journalist seeking stories from women living with rarer cancers.
read article
News from NICE on trabectedin
Mon, 21 Dec 2009
NICE allows access to trabectedin for advanced soft tissue sarcoma
read article

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