On Monday 7 April a profile bed was installed in our sitting room — another step on the inescapable decline. The bed is ideal: it has the facility to raise and lower itself, raise the knee portion or the shoulder portion, tilt up the head end or the foot end. Patti moved into it after breakfast. Since then we have found it a great boon. Patti is able to drive it herself, and when bored will fiddle with the controls .. .

The tumour is having its effect on Patti's ability to think. Yesterday she wasn't able to play any card game without lots of help, whether pontoon, rummy, or cribbage. She had forgotten the rules of Beat your neighbour out-of-doors and could not play that simple game even with reminders from Dan and me. Eventually we gave up. She struggled to read a magazine out loud: complex words she guessed at, leading her to make up the whole story. She ripped up one page of the magazine, and then tried to fit it back together like a jigsaw. Patti can no longer tackle crosswords, which is sad: she used to look forward to tackling Tim Morey's one in The Week. But she is still fascinated by the history of the Royal Family, and has a family tree going back before William the Conquerer which she often has at hand.

Over the past fortnight Patti has been plagued with a urinary tract infection which brought all sorts of complications and a lot of pain. I had to give her oral morphine one day, and then Debbie, Matron of Hythe Hospital, came over to give injections of morphine and a muscle relaxant. However, with the blessing of modern antibiotics that has now been cured and we are back to what has become our normal existence. It made us think more carefully about tackling the next stage. I realised I wouldn't be able to cope on my own when anything like that arises. So we have decided that Caroline will live here and suspend for four months her duties at Princess Anne Hospital where she is working with tiny babies. So we'll have our own special doctor on hand. With Caroline and me both here full time life will be much more practical. For one thing, either of us will be able to leave the house! I had been starkly aware that unless there is another family member here I am trapped; the apogee of my orbit is Tesco Express just over the road.

Over recent weeks we have been helped by various lovely people, especially Gill and Lynn from Oakhaven's Hospice-at-Home. Our daily routine now starts at 9:30 with an hour-long visit from one of them to check Patti over and give her a wash or a shower. Lynn worked with brain tumour patients for over thirty years, She has attended to Patti all over the Easter holiday weekend and as given us lots of good practical advice. The help from Hospice-at-Home is necessarily short-term, as their staff is small and their potential client base large. so from this coming Thursday, their role will be taken over by True Care, a small agency covering the New Forest, based in Hythe. Chris, who leads the Hythe part of the New Forest, will attend Patti to start with. Once that arrangement has bedded in, Chris will introduce one or two of her colleagues.

We are also blessed with a splendid district nursing team based at Hythe Hospital. For our purposes they are led by Sian and Tara, both experienced in dealing with brain tumour patients. Sian worked at Oakhaven for eighteen months some years ago. Palliative care is her specialism. She left Oakhaven because she saw that palliative care was inadequately handled in the community, and wanted to do something to correct that. So now she works as a staff nurse in the District Nursing Team. Tara worked for some time on C4 ward at Southampton General, which focuses on neurology patients; Tara has experience of glioblastoma. So between the pair of them we are very well served. Their occupational therapist colleagues in Community Care seem able to produce equipment (like the profile bed) at the drop of a hat.

Other news

Our elder daughter Anna was here during much of January. During the radiotherapy stage, Anna was indefatiguable in helping me take Mum to the hospital, ignoring my short-tempered outbursts, and coping with all our many difficulties. It is Anna, I now remember, who is our best qualified carer. After all, it was Anna who took four months off after school to work with all sorts of disabled people in the Leonard Cheshire Home at Greathouse, Kington Langley. Anna and her chidren (Caleb, Naomi and Judah) came down from Kendal for a week, returning home on Monday 14 April. With a couple of tables borrowed from Ryc at the Abbey Church, we had set up a school room in one of our bedrooms, as Anna home tutors her children. Here is an outdoor science lesson at the Arden House Primary School:

Patti was delighted to see them all of course. Here are the children: with Stu, having just scrambled along Striding Edge to the summit of Helvellyn, and in their own garden later:

Our son Dan has often been coming at weekends, sometimes with his family, sometimes alone. Dan is full of good spirits, encouraging and cool in the face of all alarums. This weekend he took over from me as main carer, putting Mum to bed, sleeping in her room in case of calls for help, and cooking for us all. That's how I've found the time to get this bulletin together. Here are Katie and Sam with their Mum Jenny, and here is Patti in the garden with Dan:

Our younger daughter Caroline has been a huge contributor, with her knowledge of medicine, her practical help and her merry tinkling laughter which Patti so much enjoys. It's always a tonic to have Caroline around, whether she's making light of problems or playing her guitar to cheer us all up. Caroline is a paediatrician at the specialist neo-natal Princess Anne Hospital in Southampton, where amazing treatment and care is given to premature and unwell babies. Here are some pictures of Caroline on her pilgrimage to Santiago de Compostela last summer:

We've had few other visitors: many of you have suggested coming to see Patti of course, but I am sorry to say it's not really practical any more. Since 24 March Patti has not been beyond the front gate: she's limited to house and garden, which she loves. And too many people she just finds confusing, tiring, and worrying. She'll get anxious easily and that contributes to intense frustration. She is at her calmest and most peaceful either alone or with just one person near her that she knows well. Telephone calls are difficult for her. Often when the phone rings she gets agitated and asks that we don't pick it up — even with close family calling. Please don't be offended if she doesn't speak to you: you are not alone! So if you feel cut off and would like her to know you are thinking of her, just send a short email to patti@arden-house.net with some news of what you are doing, what's happening in your world that she might understand or recognise, and I'll print it out for her to read. She has so many good friends that it's sad to realise she won't see them again — but that's just how it is. I hope you will understand. To inspire you, here is a simple arrangement she made from flowers she gathered in the garden this morning:

By now you will realise that my bright idea of taking Patti to New York turned out to be not such a bright idea after all. I have had to cancel the trip. I now realise what a nightmare it would have been. It surprises me that both Patti's consultants told us they thought it a great idea, when it was clearly impossible. I had half an hour on the phone with a very considerate Doctor Chris Shastri at InsureCancer, the only knowledgeable person prepared to have a frank discussion with me about possible risks to Patti's health, consequences for her if we went ahead, and the reasons why we would never get insurance. In his words "You would be better employed spending time with your wife, rather than wasting time on a fruitless search for insurance cover".

... Which is what I have been doing. I am enjoying all my family, too. It is wonderful how we are all coming together to help each other and to look after Patti: Wife, Mum and Granny, whose legacy and living memorial you can see in the photographs here.