14th September 2010 - Meeting with Mr Kay, Neurosurgeon, QE Hospital

Deb's craniectomy was on 22 July and she was discharged from hospital on 25th July. Since then she has been good. Her feelings of nausea have gone and her bouts of dizziness have largely disappeared. She has not had any severe headaches. There have been difficulties with getting booked in for an MRI scan but eventually this took place on 9th September at the 'old' QE, 7 weeks after the operation.

On 14th September we saw Mr Kay, the Surgeon. He examined the scar and asked about Deb's health. We then had a look at the latest scan. The tumour still occupied about the same amount of space (or maybe seemed a bit larger) and there seemed to be more "active" areas. Mr Kay explained that he had removed tissue from the middle of the tumour and this space was still there but now full of water. He also showed us a version of the scan which showed up the oedema in the brain. This has greatly reduced since the operation. I asked whether the amount of active areas on the scan (ie high grade tumour) could be taken as an indication of the effectiveness of the gliadel wafers. Mr Kay said "we should not focus on the scan but on Deb's health which is very good". He explained that Deb would have been in a worse place if she had not had the operation. The operation had brought her some time before a decline in her health sets in.

I think Mr Kay thought I was being critical of his work (I wasn't, I was just trying to establish exactly what we were looking at on the scan) and he reiterated that he had removed as much of the tumour as he could but would not go near any major blood vessels in the brain or the ventricles containing CSF (Cerebral Spinal Fluid).

He did say that there was a possibility that the operation could be repeated if the circumstances warranted it e.g. if Deb had problems because of a localised development within the tumour he might be able to remove it. He also said that during the operation they had considered inserting a shunt to drain off CSF but the tumour had not closed up the connection to the ventricles and they had decided that a shunt was not needed.

He finished by saying "I know I haven't answered all of your questions but you should concentrate on the fact that Deb is in good health and to look forward to Christmas". He said he would not need to see Deb again but the need for surgery would be kept under review at MDT meetings.

I came out feeling dissatisfied. Was it good or bad news? The scan looked worse than pre-op with more active areas but Mr Kay did not want to talk about the scan and said we should concentrate on Deb's health. We see Dr Sanghera, Oncologist, next Tuesday 21st September and hopefully he will let us know more.