Sun, 12 Oct 2008
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
Cardiff Half Marathon
Mon, 29 Sep 2008
Please sponsor Mags Donovan in the Cardiff Half Marathon on 19 October 2008.
read article
Have you or your family been refused treatment for a rarer cancer?
Mon, 15 Sep 2008
If you or your family have been refused PCT funding, please contact us.
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Rarer Cancers Forum Annual Conference
Mon, 15 Sep 2008
The conference is open to all people with rarer cancers and their families.
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New RCF report reveals striking postcode lottery in the chances of having an exceptional request for cancer treatment approved
Mon, 11 Aug 2008
Over 1,300 cancer patients have been left to die in the last 20 months because they were not deemed exceptional enough to receive cancer treatment on the NHS
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Trust Us? - new section on our website!
Fri, 14 Mar 2008
It's called 'Trust Us?' and it will help you find out how your PCT is doing in ensuring people with rarer cancers receive the treatments they need.
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The Rarer Cancers Forum is UK registered charity No. 1109213