Many thanks for the fantastic response to our request. You’ve sent us back lots of questionnaires, which are now being used to compile the first booklet on Diagnosis. In February, we’ll be requesting your help again for the next booklet, which will be about Living with a Rarer Cancer.

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Patient Experience Booklets

We are currently putting together a series of booklets in conjunction with the Rarer Cancers Forum, entitled “Patient Experiences”.

As well as containing expert material from psychologists and clinicians, these booklets will contain the experiences of patients, their families and carers. We hope that by sharing these stories, we will be able to illustrate the range of different emotions that people experience at different stages of their journey with a rarer cancer. We hope that this, in turn, will offer comfort and support to the reader, and will help to make them feel that they are not alone, and that all of their feelings are natural.

The first booklet will be about DIAGNOSIS, and I am URGENTLY looking for a group of patients who would be prepared to fill in a questionnaire about their experiences relating to diagnosis.  There is also a questionnaire for friends and family members, who are also deeply affected by a cancer diagnosis.

I’m on a really tight deadline, so hoping to receive some completed questionnaires by the beginning of next week. I’d be really grateful if you and/or some of your family members could take a few moments this week to share some of your experiences with me.

All information will be treated with the utmost confidentiality. We will attach name, age and type of cancer to each patient story, but will happily change these details if required.

I’m trying to complete the first booklet by the end of January, so am up against a tight deadline. The next two booklets, which will address “Living with Cancer” and “The End of Treatment”, will be written over the coming months, and I will also be looking for patients to help me with these.

The booklets will be available as downloadable PDFs as well as hard copies, and they will be available to any individual or organisation who wishes to use them.

We’re hoping that, as well as being a source of comfort and support to patients, these booklets may also help us to raise awareness of some of the inequalities faced by rarer cancers patients.

If you would be happy to help, please contact me on 07595 068998 or maiasissons@me.com and I will send you a questionnaire. The questionnaires are also available to download below. If you click on them once, they should appear in your download folder.

Thank you!

FAMILY QUESTIONNAIRE PATIENT QUESTIONNAIRE

Constitution Document Amended Feb 06

A big thank you to Jamie and Jordan, who will be running the Milton Keynes Half Marathon on Sunday 7th March. Here Jamie tells us why he’s raising money for the Foundation:

‘Laura, my beautiful wife was diagnosed with Neuroendocrine cancer in September 2008 and her condition has been stabilised fantastically well by the wonderful staff at The Royal Free Hospital. Throughout this time The NET Patient Foundation  ) has been a great point for information and support through the website and forum. They rely solely on patients and their friends and families to raise funds to help to support them following a diagnosis, and importantly to continue its valuable research.

We will be running the 2010 Milton Keynes half marathon on Sunday March 7th, well Jord will and I’ll be what they call dragging my butt around the course attempting to catch him.

So please show Jord and me your support. Come down to Willen Lake and have a laugh but more importantly, make a pledge at http://www.justgiving.com/Jamie-Williams1

Please please dig deep and donate now.

Cheers

Jamie’

Abigail had a wonderful time, and came 2067th out of 15,000. Well done!

To donate, please visit her JustGiving page at:

http://www.justgiving.com/Abigail-Gayer

Cancer.NET overview of NETs

NHS Guide to Gastrointestinal Neuroendocrine and Carcinoid Tumours

Annals of Oncology – Symposium Article on NETs

Annals of Gastroenterology – Biology and Management of Gastric NETs

The Oncologist – Carcinoid Tumours

American Journal of Roentgenology – Carcinoid Tumours of the Stomach

Multidisciplinary Symposium – Neuroendocrine Tumours

Carcinoid Founation – A Review of Carcinoid Disease

National Cancer Institute – Gastrointestinal Carcinoid Tumors Treatment

Macmillan – Carcinoid Tumours

Many thanks to Charlotte Johnson, for organising the Lorna Jean Charity Ball, which took place on 29th January at the Country Park Inn, Hessle, Hull. There was a three-course meal, live band entertainment, a live auction and disco. The Ball was a great success, and raised nearly £400 for the Foundation.

npf newsletter

We’d be grateful if you could let us know what you think of it – please email maia@netpatientfoundation.com

The National Cancer Research Network (NCRN) are  looking to recruit patients and members of the public to join their NCRI Clinical Studies Groups where new ideas for cancer research are developed.

Application packs are available to download from the NCRI website at http://ncrndev.org.uk/index.php?option=com_content&task=view&id=70&Itemid=117 or alternatively by contacting the NCRN Coordinating Centre on 0113 343 2254.

Please note the deadline for return of application forms is 27th January 2010.