08 January 2020 - At home

I received this letter from the Brain Tumour Charity a few days ago. The total donations made in memory of Deb came to £1874.95. The money will help the charity to fund research into a cure for brain tumours.

Deb lives on in my memories and yours. My love to you all. Chris

10 December - At Home

Flowers from the floral tribute on Deb's coffin

I guess this will be my last blog post. It is only just over 3 weeks since Deb died but already we are now in a different world. Before everything seemed purposeful and permanent; now it seems I've set up temporary camp in my own home. 

Anyway I just wanted to thank everyone who attended the funeral and for all your kind donations to the Brain Tumour Charity. The amount collected so far:

          Cash at the funeral:                   £731.00

          Cheques:                                   £200.00

          Donations to JustGiving page  £569.79      

          TOTAL                                     £1500.79

Thanks to all of you who have been with me over the last 10 years. To those that I know and to those who I don't but have just dropped in to read  what I had to say. Thanks to you all.

THE END

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.

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.