1 October 2018 - Room 11, Radiotherapy Department, Cancer Centre, Old QEH

The start of Deb's third week of radiotherapy. This last week has seen a further deterioration in Deb's condition. A week ago Deb managed to get into RT just using her walking stick. Now the only way I can  get her in is by wheelchair transfer from the car.

This is a copy of notes I made for the week:

24/9/18 - Headache am on first day reducing steroids to 6mg
25/9/18 - am: disturbance in field of vision RH eye.
26/9/18 - pm: unable to climb upstairs fell onto knees near top. Disturbance in field of vision LH eye.
27/9/18 - Headache am. Collapsed coming downstairs. First day of 4mg steroids.
28/9/18 - Headache am. Panic attack in RT machine. GP recommends increase of steroids back to 8mg per day.
29/9/18 - Bed moved downstairs.

After RT we saw Dr Sanghera. We discussed steroid dose and Debs continuing decline. He agreed steroid dose could remain at 8 mg and that radiotherapy would continue.

Because of the continuing problems with Deb's mobility, particularly going up and down stairs, we saw our GP, Dr Garbutt last Monday. he said he would arrange for the District Nurse team to visit this week and carry out an assessment and would also refer us to  St Giles Hospice who would provide advice and support. They never showed up. So I went back to the surgery on Friday. Dr Garbutt said he had made the referral, promised he would chase it up and they would visit early next week. Had phone calls today from District nurse team and St Giles. Clinical nurse specialist will be visiting tomorrow.

Last week we did have a visit from Ralsten Du'Quesnay, Birmingham City Council Speacialist Care Services, Occupational Therapy Assessor. He did say before he started the assessment that even if he did recommend something it could take up to a year to be delivered. Also he could only assess Deb as she was on that day. The fact that she is deteriorating week to week couldn't be taken into account and if things changed we would have to let him know and he would come in and revise his assessment. After looking all round the house and getting Deb to do some tasks (including going up stairs), he recommended downstairs living. But as we had a toilet downstairs and running water they would not provide anything additional. A waste of time. To be fair to him he was carrying out a social needs assessment and Deb's needs are healthcare related.

Lets see what the next week brings. I just want to thank all family and friends who have provided continuing support at this time. Its not just the physical support (feeding us, walking the dog, helping to move furniture) but in particular the emotional support. A caring voice at the end of the telephone or a friendly face calling in  for a chat or an offer of help from someone unexpected. Thank you all.