27 February - Deb beside the River Dove, Peak District, Derbyshire
Today we had a further appointment with Dr Sanghera. He was very relaxed and talked to us as though we were friends not just a patient. Deb has now completed 4 weeks of the continuous chemotherapy regime. She has tolerated the drug well and has not needed to take any of the anti nauseant medicine. We discussed the following issues:
1 Blood test
Deb's blood test results were again very good (WBC - 13.1; RBC - 4.28, Platelets - 358)It was agreed that the continuous chemotherapy would continue.
2 MRI Scan
The results of the last scan were not very good. At the appointment when we discussed the results (on 9 Febrauary) Dr Sanghera had said that it looked as though the tumour had not responded to treatment. However at the following case conference when the scans were studied by neurologists and radiographers, it was decided that Dr Sanghera had been a bit pessimistic. Dr Sanghera had rung us following the case conference to discuss what the meeting had decided. I was still not clear as to why the others at the meeting had been more optimistic than Dr Sanghera (After all Deb and I had seen the scan and the tumour was bigger) so I asked him to explain again why the results were more positive than he thought. He said that the science of reading brain tumour scans was still in its infancy. Doctors are not exactly sure what they are looking at and are continuing to learn how to interpret the results. There may be continuing pseudo progression affects. For a Grade IV tumour that was not responding to treatment you would expect more growth than Deb had, so it appeared that the radio/chemotherapy had slowed growth to some extent and was having an effect.
Deb had got a date through for her next scan (Sunday 15 March). Dr Sanghera thought that this was a bit too soon and it was agreed that the next scan should be deferred until the beginning of April.
3 Emotional State
We have all been down since the last scan result. Deb's sleep is not very good with her waking up between 4 and 5 every morning. We all seem to be sitting around just waiting for something to happen. For example: Following her palpitation Deb came out of Good Hope hospital on Saturday 14 February. 2 days later she is downstairs in the morning when she calls up to say she feels unwell I go downstairs and while we are sat on the bottom of the stairs Deb faints, She faints again later and had 48 hours of sickness and diarrhea. We assume that the fainting is due to the tumour and decide to take no action but continue to monitor the situation. It wasn't until on the Wednesday morning, when I got up at 5:30 in the morning and fainted in the bathroom and had the same symptoms as Deb for 48 hours that we realised that Deb's illness was nothing to do with the tumour at all but due to a norovirus infection we had picked up at Good Hope Hospital. (They have since closed two wards at Good Hope because of this). This state of continuously waiting for something to happen is not good. Dr Sanghera and Fred agreed that we should have some help with this and Deb (and maybe the whole family) should be referred to the psychologist at the Cancer Centre.
4 Next Appointment
In 2 weeks time at QE for further blood tests
