24 October 2018 - At home

Deb and Kate at the dinner table

Sorry I haven't updated the blog sooner but there has been doesn't seem to have been enough time. Sam is home today and Kate is on her way so I have a little time to myself. (And I spend it writing this - quelle idiot - I should be outside walking the dog or sweeping up the leaves or something). Deb finished her radiotherapy on 12 October. The mask was still very tight for the last week but she managed to get through the last few sessions. On the last day the RT team gave Deb her mask as a farewell present. It now sits ominously in a corner of a spare bedroom. The RT left Deb very tired and even now nearly 2 weeks later she still sleeps for long periods during the day. It was a relief to finish the RT and not have to get up and out of the house early to make the trip  across Birmingham to the QE. However Deb was depressed after finishing the treatment. She felt that action was no longer being taken to stop the tumour. 

Some things that have happened since then:

1  Visit from NHS Occupational therapy/physiotherapy team. Their assessment was that Deb could eventually with assistance be able to get back up the stairs and have a shower. They arranged for grab rails and hand rails to be fitted to our stairs (all those holes drilled in our lovely walls!!) and fitted a rise and fall chair  in the bath to allow Deb to shower sitting down. The Physio has been visiting twice a week since then to get Deb to practice getting up and down the stairs. As yet she has not been successful and only managed 5 or 6 steps. 

2  The district nursing team are visiting twice a week. When Deb fell down the escalator she injured her leg. When the scab fell off  the wound looked a bit pussy so the district nurses have been coming in to change the dressing.

3   Visit from the community nurse from St Giles Hospice. She discussed what the hospice could provide (day respite care, overnight stay by carers to give me a break, palliative care). We need to contact them if we need any help. 

4  I have arranged for a a cleaner to come in once a week (Lucyna the cleaner). She is great and cleans most of the house (in particular both bathrooms) in 2 hours. 

5  Initially the Rapid Response team were visiting once a day to wash Deb. At first because of the radiotherapy this was at night but when that finished it was in the morning. This is a short term emergency service and after a week or two you have to replace it with your own arrangements. What they did was simple and straightforward; something I could easily do. And we could do it when we wanted (not wait around all morning) and without the disruption of strangers barging into your house and taking over (it was different carers every day). So they no longer come and I do the washing.

6 The District Nurse carried out a Continuing Health Care Assessment. If we score enough points on this it will mean that most of Deb's treatment including much of her social care needs will be deemed to medical and therefore paid for by the NHS. As I understand the system the initial assessment is carried out by the district nurse. If we get through that hoop we then have a further in depth assessment before the results are passed to a committee who make the final decision. The process should take about a month.

7  I have now moved to online shopping. A surprisingly relaxed way of getting your groceries. I should have done it before.

8  Last Monday I awoke at 6 am to find that Deb had tried to get out of bed on her own and fallen to the floor. I couldn't get her back up on my own and rang 999. The ambulance crew were very good and just lifted Deb back into bed. They spent another 1/2 hour checking her over to make sure she hadn't fallen because of a heart attack or a stroke and then another 1/2 hour filling in paperwork. 

9 Last week end I tried to get Deb into the car. We manged the transfer to the wheel chair, and to get over the steps by the front door (NHS physio is to provide ramps) but couldn't manage to get from the wheelchair into the car. This would mean that I could not get Deb to the hospital. Yesterday Deb was due to see Dr Sanghera. I therefore contacted the hospital and after discussion the appointment was cancelled. Deb's next visit to the hospital will now be for an MRI scan and we are still waiting for a date. 

That's all for now. Will try to update regularly.