27 November 2018 - At home

The funeral director's have now set up an obituary web page. It has a link if you wish to make a donation to the Brain Tumour Charity and details of the funeral. If you wish you can also upload your photos of Deb.

The link is:
Deb's Obituary Page

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.