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.  

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

Deb in her hospital bed in our back lounge

Deb started her fourth and final week of radiotherapy today. Sam came with us on the visit today. A side effect of the steroids is to cause Deb's face to swell up. The face mask that she has to wear to secure her to the table during RT has therefore become tighter and tighter. The RT staff have made some adjustments but they are limited in what they can do and still retain accurate positioning for the radiation treatment. Because of the tightness of the mask Deb felt she couldn't breath and again the treatment had to be stopped to give her time to recover.

We saw Dr Sanghera after RT treatment. He said that if the mask became too tight to carry on we could have another mask made. Deb said she only had 4 sessions of RT to go and she would try and finish them using the existing mask. We discussed how Deb had been over the past week. Following the increase in steroids last weekend Deb has not had any headaches or other significant effects from the tumour. However she continues to be very tired and weak. I guess she sleeps about 50% of the time. We are now living fully downstairs, although Deb did go upstairs once during the week to have a shower. We will see Dr Sanghera in 2 weeks time. Next MRI scan to take place in 4 to 6 weeks.

 It has been a busy week. Here are some of my notes:

2/10 - RT am. Visit from Emma District Nursing Team. Checked Deb - bed sores dry skin etc. Carried out assessment. Need: hospital bed, mobile commode, slide sheet, pads, personal care ( arrange for rapid response team to visit to wash Deb), will arrange assessment by OT and physio team. Phone call from Lindsey St Giles Hospice - visit next week for assessment.. Visit in evening from Rapid response team.

3/10 - RT am. Visit from RR team in evening - changed Deb and put her to bed - no wash.

4/10 - RT pm. Bed and other equipment delivered.Deb had shower in morning. RR team no wash. Cherry and Martin made dinner in evening.

5/10 - Visit from Liz and Chris. GP Dr Garbutt made house call - discussed end of live plan. Social services called will visit next week ( this lot will take over from RR team.). RT pm + Liz and Chris. All appointments next week in morning 8.45 or 9.  Visit from Occupational/Physio Therapy team. They thought with additional equipment Deb could get upstairs for showering. They will provide - bed levers, zimmer frame, perching stool, bath lift, handrail + grab rails. All should be installed by the end of the week. RR team. Sam home for weekend.

6/10 - Deb very tired. Most of day in bed. RR team

7/17 - Dinner provided by Jenny and Patrick. RR team

The radiotherapy is getting more and more difficult for Deb. The trip to the hospital itself is a bit of an ordeal. The tiredness caused by the treatment, and particularly the tightness of the mask are both significant issues for Deb. Still only 4  more sessions left and it is all over. Will post again soon

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.