30 May 2017 - Cancer centre, Old QEH, Birmingham

Deb shortly before her diagnosis in May 2008

Deb was diagnosed on 23 May 2008, so she has now lived with this tumour for 9 years. I cannot even begin to understand what this must do to you mentally. Your brain is you. The seat of all your thoughts and emotions. To have a tumour in there, always in there, always just waiting to grow and take over the very essence of you must be very frightening. And in an effort to stop the tumour you bombard your brain with very high levels of radiation and very toxic chemicals. Radiation and chemicals whose very job is to kill living cells within your brain. That must have an effect on you, the very thoughts and emotions that make up what you are.

OK, Deb has completed her 9th cycle of chemotherapy. For some time Deb has had a variety of symptoms which were low level and intermittent but lately have become more pronounced. These include: dizziness and she falls more often, when she walks she often has a tendency to shuffle rather than pick up her feet properly, she leans while walking and going down a slope will get faster and faster and be unable to stop herself, she lacks concentration and will often start something then leave it half way through to start something else, her handwriting is deteriorating. Deb has discussed these problems with our GP who says he believes they are tumour related (many are also symptoms of Parkinson's disease but he does not think Deb has this). Deb had sent a note to Claire (the Clinical Nurse Specialist) explaining her concerns. 

First we met Dr Sanghera's registrar who discussed the issues and did a variety of tests on Deb relating to balance and body strength. Deb had her blood tested and we then met Dr Sanghera who did more tests. One of these was Unterberger's stepping test (you hold your hands out in front of you, close your eyes and walk on the spot for a minute or two). Most people stay more or less where they are but Deb slowly rotated through more than 90 degrees without knowing it. This test measures the effectiveness of the vestibular system (in the ear) which gives us our sense of balance. Deb has therefore been referred to an audiologist for further testing. In Dr Sanghera's opinion the symptoms Deb is experiencing are not due to the tumours themselves but are a product of the radiation and chemotherapy treatments that Deb has had over the years. The cumulative effect of the treatments may have caused a general deterioration within the brain. We did discuss whether the current course of chemotherapy was causing the problems. It was felt that this was unlikely and it was agreed that treatment should continue. 

We return to the hospital in a months time.