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  • Forum Post: Mum has Stage IV NSCLC which has spread to her bones...

    Hi I have been asked to attend a family meeting tomorrow and want to know if anyone out there can relate to what is happening with my mum as I feel so lost at the moment and cannot even think of questions I should be asking. 8 weeks ago today, mum was sent to A&E with back pain and was told...
  • Forum Post: Brain tumour treatment related fatigue

    Hi, I am new here. My neurosurgeon has advised me I should join a brain tumour support group for advice. I am a 35 year old male diagnosed with a low grade benign polycystic astrocytoma in 1996. Treatment todate: VP shunt (with four revisions to date) Three debulkings (craniotomy once, super...
  • Forum Post: Brain tumour treatment related fatigue

    Hi, I am new here. My neurosurgeon has advised me I should join a brain tumour support group for advice. I am a 35 year old male diagnosed with a low grade benign polycystic astrocytoma in 1996. Treatment todate: VP shunt (with four revisions to date) Three debulkings (craniotomy once, super...
  • Forum Post: Grade 4 Glioblastoma and steroids

    My dad was diagnosed with a grade 4 Glioblastoma in January this year, it was half the size of a tennis ball and they debulked it (got out around 80%) Its on the left frontal. Before we knew what was wrong with him we had noticed he was dragging his right leg a bit and his word finding wasn't good...
  • Forum Post: Re: Explosive nature and frequency of bowel movements after radiotherapy

    Hi John Don't apologise for the detail. We need straight talk and not euphemisms which obscure and confuse. I'm starting radiotherapy on March 24. I've used Fybogel before, as a laxative but I don't have any quick fix advice. I've been advised not to change diet during radiotherapy...
  • Blog Post: TechnoJoy

    Have just Sussed out how to add to my blog via my new iPhone so expect a long post tomorrow. Generally speaking I am physically feeling better but reliant on my brilliant wife to look after me due to med requirements and not being able to drive etc. am oh so conscious that I am not communicating by voice...
  • Blog Post: Brain tumours webchat – Thursday 20 February

    Join us for a webchat about brain tumours next Thursday lunchtime. Cancer information nurse Angie will be live in the chatroom, supported by Lynne, a radiographer. Angie will be answering questions about topics such as cancerous and non-cancerous brain tumours, symptoms and living with brain tumours...
  • Blog Post: Real time - radiotherapy

    Saw Dr Payne at UCLH yesterday. I told her I'd agreed to go ahead with the radiotherapy and she had me sign the consent form there and then. We talked through the possible side effects once more, loss of erections (permanent), urinary problems (probably temporary), bowel problems ( probably mostly...
  • Blog Post: Unsettling news

    My follow up with the consultant involved regular blood tests to monitor the PSA level. My initial appointment in August 2005, showed the reading was <0.1, too small to register. Every six months, a blood test confirmed the reading, until 2012, when a reading of 0.1 showed that there was some sort...
  • Blog Post: Slow Release Pain Relief

    Now 0130hrs and am just waiting for PEG feed to force down a few more millilitres so I can tick another portion off my nutrition list. Switched to long lasting pain relief yesterday evening. Good news is that the tablet offers 12 hours pain relief, therefore in theory that could equal twelve hours unbroken...