Some more Qs & As

Hi Chris

Thank you for your email

and 2.There are three support groups in the midlands. One is in Worcester run by Rosemary Wormington WWW.WBTSG.ORG, Brain tumour uk shrewsbury 0800 988 2628 and we are launching a third on 12th September at 2pm Birmingham central Library. There are numerous charitiest around, two of which are Samantha Dickson Brain Tumour Trust and Braintumouruk.org who have fought and moved things on in the brain tumour world.
They offer telephone support as well as meetings and drop in sessions. Samantha Dickson support is coming to the cancer centre on18th of August. They are very pro active and good support.

3. We have introduced patient information prescriptions and this can be recorded by the medical staff whilst in clinic. I can remind Prof Jones about this but I think it is more likely that Fred and I can do this for you.
WE have proper Dexamethasone reducing/changing charts that you can be given when reducing steroids.

4. We have booklets about Temodal. Given to us by Scheering Plough. We are aware of the web site. We regularly meet with the reps and are waiting for more info leaflets from them as they have this website on the sheet.

Hope that helps
Best wishes
Claire

Claire GoddardMacmillan CNS Neuro-oncologyInternal: 8663Phone: +44 (0) 121 472 1311 x 8663Email: Claire.Goddard@uhb.nhs.ukWeb: http://www.uhb.nhs.uk Neurosurgery - University Hospital Birmingham NHS Foundation TrustNeurosciences OPDQueen Elizabeth Hospital, Queen Elizabeth Medical Centre,Birmingham, B15 2TH
-----Original Message-----From: chris.eaton@live.com [mailto:chris.eaton@live.com] Sent: 12 August 2008 08:06To: Claire GoddardCc: Frederick BerkiSubject: Deb's Brain Tumour

Claire,

It was good to meet you yesterday when I came to the cancer centre with my wife Deborah Eaton.

I have some questions.

1 While we were waiting to see the doctor we talked to other patients. 2 of these had GBM tumours like Deb but were in different stages of their treatment. I found this contact very helpful. It was good to share experiences if only to learn that you were not the only people going through this. Is there some event when brain tumour sufferers can get together either through the hospital or outside? We have been told about cancer support groups but I guess they are a bit more general and you would be unlikely to meet brain tumour sufferers.

2 I have started a blog detailing what has happened to Deb (You can find it at www.themasseffect/blogspot.com - I set it up to inform all our family and friends of what was happening. They can look at the blog and we don't have to spend half our life on the telephone). I don't mind other people accessing the site and I am sure that others must have done similar things. Do you keep a log of blogs/websites set up by brain tumour sufferers that I could look at?

3 A suggestion. At every meeting with consultants I have to take notes. Often these have been related to drug doses, timings etc. Much of this information seems crucial but the information has not been confirmed in writing. The doctor must have to write up his notes after the meeting. Couldn't they do this during the meeting and then give us a copy at the end? This would ensure all important decisions were clear to all involved. (I thought all notes were kept electronically now - he could email us a copy).

4 At the Schering website (manufacturers of Temodal) I found a patient therapy information sheet (at http://www.temodar.com/temodar/application?origin=index.jsp&event=bea.portal.framework.internal.refresh&pageid=treatment&__event=goto_index). I found this very useful in explaining the treatment cycle.


Thanks for your help

Chris Eaton