Its not been a good week. On Monday we went to the QE to see Dr Sanghera. We had already cancelled the appointment once so that I could make arrangements with hospital transport to get Deb there. (A note for future reference: hospital transport is for the hale and hearty. If you are really ill don't use it. Get to the hospital some other way.) The transport picked Deb up - she was in her own wheelchair - about 9.00 am for an appointment at 10.50. So we arrived at the hospital about an hour early. Dr Sanghera's clinic was running about 3/4 hour late. So we actually saw him at about 11.30. By this time Deb was getting very agitated both physically and mentally. After the meeting we then had to wait a further 2 hours before the transport arrived to take Deb home. This was too much time in a wheelchair for Deb and when she finally got home after five and a half hours she was exhausted.
The problem was compounded by the fact that Deb had started a bout of diarrhoea. Even if you are well diarrhoea can be very stressful; if you are seriously ill, cannot walk and wearing incontinence pads it is a nightmare. This lasted two or three days (and nights) but she now seems to be back on a even keel.
The visit with Dr Sanghera lasted about 10 minutes. We discussed how Deb had been following the radiotherapy, the steroid dose (it was decided to keep her on the same dose of 8 mg per day) and examined the back of her eyes. He said all of Debs symptoms could either be caused by the tumour or by the radiation form the radiotherapy and she still could improve. Deb was due to have an MRI scan next week. This wasn't to be used as a guide to treatment - all treatment has now stopped - and was to be used a baseline for any further scans. Given the problems we had on Monday I have discussed the matter with the hospital and it has been agreed the scan is not necessary.
I think Deb has deteriorated slightly since my last post. She now has trouble gripping the fork in her left hand and I have to cut up her food. She is weaker and finds it increasingly more difficult to stand. I would say she now sleeps for more than 50% of the time.
Our application for NHS continuing healthcare is still slowly working its way through the system. We apparently have passed the first assessment and a second more detailed assessment is to take place next Thursday 15th. A multidisciplinary team meeting will take place at our house lasting about 2 hours. I have a 4 page form to fill in before the meeting. I have to provide appropriate seating for someone to take notes.
I am fit and well. A little tired at times. A little stressed at times. But I love my wife and will continue to take the best care of her I can.
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