20/11/2018 - Home

Bert at the foot of Deb's bed

Today we were able to confirm the arrangements for Deb's funeral. We visited the funeral directors this morning, who were very helpful and put us at ease.

Deb's funeral will take place at: 

Sutton Coldfield Crematorium
Tamworth Road
Sutton Coldfield
West Midlands
B75 6LG

Website

The service will take place on Tuesday 04/12/18 from 1-2pm.

After the service a funeral reception will be held at:

The Royal Hotel
High Street
Sutton Coldfield
B72 1UD

Website

This will take place between 2:30 and 6pm.

Deb requested that people do not send flowers but instead make a donation to The Brain Tumour Charity. A donation page is to be set up by the funeral directors and I will post the link when it is available, a cash box for donations will also be available at the funeral.

Deb will be laid out at the funeral home next week and people are able to pay their respects at any time between 9-5, although we do not know the specific days yet and will update as soon as we do.

The funeral home is located at:

The Co-Operative Funeralcare
30 Boldmere Road
Sutton Coldfield
B73 5TD

Website

The funeral directors is a short walk from our house but parking near there can be difficult. Feel free to park with us and we will walk you down.

I will update with any further information as soon as I have it.

17 November 2018 - At HomeDeb

Deb in India shortly before the diagnosis of her brain tumour

Deb died at 20 minutes past midnight this morning.

As deaths go this was as good as we could ask for. Deb was at home, in no pain and surrounded by people who loved her and who she loved. In the days immediately before she died she was able to say goodbye to everyone and was grateful to be able to see all of her family. When Deb was diagnosed a decade ago we never imagined she would live this long and are grateful that she was with us as long as she was.

Around a week ago Deb began to deteriorate until she was bed ridden. During this period she became unable to feed herself, take tablets or anything orally. The carers began visiting four times a day to help take care of Deb and the district nurses began administering her medication via syringe drivers.

She was made comfortable and relaxed and it became obvious that the end was close. Last night her breathing became more laboured and eventually ceased. Sam, Kate and I were with her as she died and were able to say a final goodbye. District nurses came and verified Deb's death and the funeral directors arrived.

Throughout all of the posts I have written over the last 10 years you will see repeated mentions of various NHS staff. These staff have given us incredible support and guidance and we feel that Deb's treatment is a testament to the excellent service provided by the NHS. We were always treated with care and compassion and given the best support available.
I will update this blog with details of the funeral arrangements once we have organised them.

8 November 2018 - At home

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.

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.

24 September 2018 - Room 11 Radiotherapy Department, Cancer Centre, QEH

The start of Deb's second week of radiotherapy. She has declined markedly over the last few weeks. In particular she has muscle weakness. This is more pronounced on her left side and in her upper legs. She has great difficulty getting up and down stairs, (after the escalator incident I get very worried about her falling), can not get out of the chair unaided, struggles getting in and out of bed and whenever sitting slumps to her left hand side. I do not think the decline is due to the radiotherapy but rather the tumour progression affecting the brain. (The tumour is in the RHS frontal lobe - the RHS of the brain controls the LHS of the body). Her cognitive function is also more impaired. (Deb doesn't know what day of the week it is, cannot do simple sums etc).

During the week, after discussion with Fred Berki, Deb's steroid dose was increased from 4 to 8 mg per day. This made her brighter and more alert but did little to improve her muscle weakness.

Today we struggled into RT, we took the wheelchair but in the end Deb thought she could walk with just the use of her stick and afterwards saw Dr Sanghera and Claire. This was the first time Dr Sanghera had seen Deb since her escalator fall and he was concerned to discover why that had happened. We discussed Deb's condition. Dr Sanghera said that one of the effects of increasing the steroid dose could be muscle weakness and suggested we slowly reduced the dose back to 4mg. Deb might be more tired but she may have better mobility (Deb is also showing some signs of face swelling (moon face) which is a side effect of steroid usage.) We will keep the steroid dose under review and may need to increase again if Deb starts having headaches or other symptoms caused by the tumour. We will see Dr S again in a week's time.

I have also contacted Birmingham City Council and arranged for them to carry out a social care assessment. Hopefully they will be coming later this week.