Colin is having the greatest of trouble keeping his body upright and moving it (from bed to chair etc) when required. He needs significant help from two people as he has quite a lean. This is rather puzzling - initially from Sunday onwards the lean had been to his right hand side, today however he's leaning to the left! This of course makes eating/drinking more difficult with some of the food/liquid ending up on the pyjamas! It also doesn't help when he's trying to move (or be moved).
The radiologist at Cheltenham has also read the MRI scan and it is now believed that the Lymphoma has indeed returned. This of course is not good news but the prognosis still needs discussing with the oncologist at Cheltenham and this cannot happen until Colin is medically fit to travel. They continue with the steroids but it is difficult to know at present how beneficial these are being as Colin has both a UTI and an infection (today referred to by the staff nurse as phlebitis) in the arm from the cannula. He is being given antibiotics for both and the former is probably adding to his confusion. The UTI was not picked up until I suggested to the staff nurse in the MAU that it might be a good idea to check for this - Colin had been so confused I couldn't understand why his initial brightness following the 'kicking in' of the medication to reduce the brain swelling had not continued.
When I phoned the MAU yesterday I was told Colin had not had a good night. I took this to mean that he'd not had any sleep due to the constant noise in there. It really is not the place to be when you're ill nor when you have a brain injury! The floor is a false one and every time someone was wheeled into the area either in a bed, chair or whatever, it was like a herd of elephants going past. There was also the constant noise from the staff and equipment and all the activity is continuous around the clock. I had made contact with Colin's neuro-oncology CNS at Cheltenham before leaving to see Colin at lunchtime not really anticipating anything more untoward than I'd seen all week. However when I arrived at Colin's bedside (well he was in the chair) he really was in a terrible mental state. I had a fairly lengthy conversation with both the staff nurse and specialist nurse looking after Colin about why he was still in the MAU and couldn't he be moved onto a ward. They also contacted the CNS at Cheltenham and between all of us they finally managed to find a bed on a ward. He was moved to Avon after he'd had his tea yesterday - and thank goodness it's significantly quieter there with the staff giving much more care to the patients.
This is not to say that the staff in the MAU were not caring - they were, it is just they are completely swamped and over-worked. The porter who helped the nurse take Colin in his bed to the ward told me that during Thursday night into Friday, Colin had been shouting out to the staff to stop the noise!! No wonder he was as he was yesterday! As we went about the building to the ward, they took the bed through A&E into the back of the hospital. It was truly shocking in there - in every corner and corridor was some poor soul on a trolley or in a wheelchair. It was like a scene from the 'third world' - all looking expectantly for some hope in being seen and treated! Probably most would end up in the MAU when there was a space available or even being treated in the corridor there too.
So we continue to wait for Colin's situation to improve and hope the anitbiotics will do the trick. At least then we can think about rehab and getting him down to Cheltenham to see the oncologist. In the meantime I apologise for not being around to answer the many phone calls which seem to come in when I've been at the hospital or travelling there and back. The visiting hours in the ward are significantly shorter so I should be around a little more although I now need to catch up with things at home which I've put on hold - at least to straighten things out to make the house look a bit less like a bomb has hit it!