Mark remains in much the same condition. Yesterday he received additional medication to manage his pain and discomfort. This seems to have been successful, though the price to be paid is that there is no possibility of further communication with him. He is in a constant and deep sleep.
Despite the peculiarity and difficulty of this time, other aspects of life (perhaps mercifully) continue unabashed. Today, for example, was my birthday. The children celebrated with me and it brought some much needed lightness to the recent run of things. Naomi, it seems, has a firm view that to have a birthday without a cake is to breach Article 3 of the European Convention on Human Rights (the prohibition against inhuman and degrading treatment). A deliciously rich cake duly appeared after dinner tonight. Wishes were made while Joel blew out the candles on my behalf.
Martha, Mary and I also stole some time this afternoon to watch Naomi appear in a performance of 'Wind in the Willows' at the York Theatre Royal. She delivered a very sympathetic interpretation of a minor weasel. It was a great production and a lovely distraction. It was nice, too, to see one of Mark and Mary's pals, Kathryn, who had come all the way from Edinburgh to see the show.
Further updates in due course. Thanks again for your support and thoughts.
Simon Halliday
Wednesday, 28 July 2010
further update
Mark had a reasonable night last night. He continues to confound all predictions about the normal run of things. Over the last few days his condition of extreme frailty has remained fairly constant with neither improvement nor significant deterioration. He had some discomfort and pain yesterday but the medical staff at the hospice are taking steps to address that.
Naomi returned safely from Paris on Monday evening with many tales of a good time with the school's choir. Joel has been enjoying curiously inventive games with his Uncle Philip and some extra time with his respite carers, Nick and Pat. In a triumph of hope over experience, Martha attended a pool party yesterday ('very cold' she assured me by text) and overnighted with pals.
The children visited Mark yesterday to say their goodbyes. This was a brave and difficult thing for them to do and we are proud of them for choosing to do so and for how they handled it.
More news in due course.
Simon Halliday
Naomi returned safely from Paris on Monday evening with many tales of a good time with the school's choir. Joel has been enjoying curiously inventive games with his Uncle Philip and some extra time with his respite carers, Nick and Pat. In a triumph of hope over experience, Martha attended a pool party yesterday ('very cold' she assured me by text) and overnighted with pals.
The children visited Mark yesterday to say their goodbyes. This was a brave and difficult thing for them to do and we are proud of them for choosing to do so and for how they handled it.
More news in due course.
Simon Halliday
Sunday, 25 July 2010
No Further News
Mary has asked me to post another note indicating that there is no further significant news. Mark's condition seems much the same. He seems comfortable, sleeping for much of the time. He has taken a little food and liquid today. Early this morning he had a short spell of particular lucidity and he and Mary were able to talk for a short while. Mary, unfortunatley, has missed these glimpses of the past over the last week. It was very good that she caught one today.
The rest of the family are camping out in Poppleton and have been taking turns to join Mary in the hospice . One of Mary's friends has allowed some of the family to stay in her house while she is on holiday. It has made this difficult trip much easier and we're very grateful indeed.
There was a healthy Halliday contingent at church this morning in St Luke's. It was, I am assured, a very positive experience. Steve, the vicar of St Luke's, has been a remarkable pastor to Mark and Mary throughout Mark's decline. It is much appreciated by all of us. Although his reward will, no doubt, be in the next life, he deserves a medal in this one.
We're very much looking forward to Naomi returning from her Parisian sojourns tomorrow, though anxious about what she will returning to. Nonetheless, it will be extremely good to welcome her back into the bosom of her extended family. We have missed her.
Further news in due course.
Simon Halliday
The rest of the family are camping out in Poppleton and have been taking turns to join Mary in the hospice . One of Mary's friends has allowed some of the family to stay in her house while she is on holiday. It has made this difficult trip much easier and we're very grateful indeed.
There was a healthy Halliday contingent at church this morning in St Luke's. It was, I am assured, a very positive experience. Steve, the vicar of St Luke's, has been a remarkable pastor to Mark and Mary throughout Mark's decline. It is much appreciated by all of us. Although his reward will, no doubt, be in the next life, he deserves a medal in this one.
We're very much looking forward to Naomi returning from her Parisian sojourns tomorrow, though anxious about what she will returning to. Nonetheless, it will be extremely good to welcome her back into the bosom of her extended family. We have missed her.
Further news in due course.
Simon Halliday
Saturday, 24 July 2010
update
This is Simon, Mark's brother. Mary has asked me to post a quick update. The doctors' prognosis as of Thursday is that Mark may now only have days, rather than weeks, to live. He is increasingly frail. Though he still has moments of remarkable lucidity with dark humour flowing, he is asleep for much of the time and sometimes a little confused when awake. His immediate family are now gathered in York and Mary is with him most of the time in the hospice. Although he has been hugely appreciative of visits, calls and texts, visits from outwith the immediate family are no longer possible and he may be unable to respond to texts or calls.
Further news will be posted in due course. Thanks for your support
Simon Halliday
Further news will be posted in due course. Thanks for your support
Simon Halliday
Thursday, 22 July 2010
Family Update
Mark has had a quiet day and has been asleep for much of the time, although he gave me a lovely silk scarf which he had managed to somehow colour in an occupational therapy session. (Even as a previous classroom teacher I couldn't quite identify the technique!)
I had to see the doctor yesterday to renew my sick note for work. During our meeting she told me that Mark was a 'miracle of survival' and that she had never known anyone with such advanced disease to survive for so long. She then went on to say lots of nice things which reduced me to tears and therefore proved me indeed unworthy for work.
Naomi went to spend some time with Mark yesterday morning, which she found a bit upsetting as he wasn't at his best. She then spent the entire afternoon and evening at the theatre as Wind in the Willows opens tonight. At about 10.30pm we did the last of her packing and then she left at 5.00 a.m for her school music trip to Paris. She has been looking forward to this for months and I am very much hoping she is able to enjoy it, although she is obviously very troubled by Mark's deterioration.
Martha is doing a great deal of Joel- watch at the moment which is very helpful. She is also digging old people's gardens for a community project ( but strangely has little interest in her own garden) and is working hard at her watercolour technique and her new piano pieces.
Joel has now '16 sleeps until the holiday house with the swimming pool.' Here are a few photos of him at his N.A.S dance workshop which Nick and Pat took him to on Saturday. I can't help feeling he has a rather natural talent!
I had to see the doctor yesterday to renew my sick note for work. During our meeting she told me that Mark was a 'miracle of survival' and that she had never known anyone with such advanced disease to survive for so long. She then went on to say lots of nice things which reduced me to tears and therefore proved me indeed unworthy for work.
Naomi went to spend some time with Mark yesterday morning, which she found a bit upsetting as he wasn't at his best. She then spent the entire afternoon and evening at the theatre as Wind in the Willows opens tonight. At about 10.30pm we did the last of her packing and then she left at 5.00 a.m for her school music trip to Paris. She has been looking forward to this for months and I am very much hoping she is able to enjoy it, although she is obviously very troubled by Mark's deterioration.
Martha is doing a great deal of Joel- watch at the moment which is very helpful. She is also digging old people's gardens for a community project ( but strangely has little interest in her own garden) and is working hard at her watercolour technique and her new piano pieces.
Joel has now '16 sleeps until the holiday house with the swimming pool.' Here are a few photos of him at his N.A.S dance workshop which Nick and Pat took him to on Saturday. I can't help feeling he has a rather natural talent!
Tuesday, 20 July 2010
Gathering of the Clans
Sorry for the gap in posts when I know many of you are watching for news. It has been a very busy few days and, today particularly, I have felt that I am snorkelling as opposed to keeping my head above water. I will resist off-loading tales of the day's minor disasters though and get straight to the latest on Mark.
Saturday saw Mark's brothers descending upon York from various far flung lands (France, Scotland, Birmingham...) Traditionally these meetings herald an indian take- away but it was felt that in deference to the sensibilities of the other residents it might be less selfish to order pizza. A good evening was had by all and Sunday morning's gathering was also enhanced by a take-in breakfast of croissants and muffins in Mark's room. Martha, Naomi and Joel were all very pleased to have their uncles and aunts about and, interspersed with visits, there was much garden fun, watching of films and raucus games of Uno happening.
On Sunday night Mark had a very rough night and quite a dramatic spike in temperature which left him feeling quite fragile. However, he was determined to go ahead with the planned home visit and so was brought here shortly after midday on the Monday. Everything went according to plan practically and, of course, it was great to have him home, but he was very tired after the disturbed night and so was unable to engage fully. It was good to know though, that it is do- able and so could be repeated at an appropriate time. It is true to say that Mark is much more frail and any activity takes its toll these days. His most recent blood test shows the tumours increasing and our latest talks with the doctors have confirmed that we are no longer talking in terms of months, but weeks.
A few practical points to note:
Mark was having some trouble with his phone and so has swapped it for another. Although his number is the same it would be good to include your name on texts as it's possible that in the transference some numbers/names were lost. He will be glad of the contact but may not be up to replying.
Many thanks too for all good and pleasant things that arrive in the post!
Mark is very pleased to have visitors. However, the hospice staff are, rightly, very protective and so there have been one or two days when they have only wanted family visiting. If you are planning to visit from afar it is probably sensible to check how things are first.
Saturday saw Mark's brothers descending upon York from various far flung lands (France, Scotland, Birmingham...) Traditionally these meetings herald an indian take- away but it was felt that in deference to the sensibilities of the other residents it might be less selfish to order pizza. A good evening was had by all and Sunday morning's gathering was also enhanced by a take-in breakfast of croissants and muffins in Mark's room. Martha, Naomi and Joel were all very pleased to have their uncles and aunts about and, interspersed with visits, there was much garden fun, watching of films and raucus games of Uno happening.
On Sunday night Mark had a very rough night and quite a dramatic spike in temperature which left him feeling quite fragile. However, he was determined to go ahead with the planned home visit and so was brought here shortly after midday on the Monday. Everything went according to plan practically and, of course, it was great to have him home, but he was very tired after the disturbed night and so was unable to engage fully. It was good to know though, that it is do- able and so could be repeated at an appropriate time. It is true to say that Mark is much more frail and any activity takes its toll these days. His most recent blood test shows the tumours increasing and our latest talks with the doctors have confirmed that we are no longer talking in terms of months, but weeks.
A few practical points to note:
Mark was having some trouble with his phone and so has swapped it for another. Although his number is the same it would be good to include your name on texts as it's possible that in the transference some numbers/names were lost. He will be glad of the contact but may not be up to replying.
Many thanks too for all good and pleasant things that arrive in the post!
Mark is very pleased to have visitors. However, the hospice staff are, rightly, very protective and so there have been one or two days when they have only wanted family visiting. If you are planning to visit from afar it is probably sensible to check how things are first.
Thursday, 15 July 2010
Home from home?
Yesterday we had our meeting with the doctor who had admitted Mark last week. She was very generous with her time and we talked over how the week had been and discussed how Mark's needs could be best met. Basically, the conclusion from all of us was that he is best placed at the hospice long term. This is due to numerous factors, the main ones being that practically, he has 24 hour care and expert supervision which I can't quite match...(!) He is also in accommodation which is expertly suited to his physical needs.
Emotionally however, this was not an easy decision and so we are going to put in place a series of home 'day' visits. Sunday's expedition taught us many things, one being that travelling in an ordinary car presents difficulties. So, for his home visits, the hospice bus will transport him and a physiotherapist will initially accompany to make sure that all is well. For any other excursions that may arise we will use a wheelchair taxi. The first outing is pencilled in for Monday when hopefully Mark's brother Phil will be here with his wife, Rosemary. Our hope is that Mark continues to remain infection-free (if there is a serious problem he may have to return to the hospital), and that we can regularly put in place a variety of small outings/gatherings to give him something to work towards.
Visiting is also much easier in the hospice than at home as visitors enter a bright, clean, tidy room (!) and do not have to fight off a needy spaniel or talk over the top of Spongebob Squarepants. Last night the church home group descended en- masse and had their meeting in Mark's room and today he was Mr Popularity and had about ten separate visits. As I was leaving this afternoon a complimentary therapist also swept in offering to slather him with aromatic oils and massage his feet (Just like home...)
Many thanks for your interest.
Emotionally however, this was not an easy decision and so we are going to put in place a series of home 'day' visits. Sunday's expedition taught us many things, one being that travelling in an ordinary car presents difficulties. So, for his home visits, the hospice bus will transport him and a physiotherapist will initially accompany to make sure that all is well. For any other excursions that may arise we will use a wheelchair taxi. The first outing is pencilled in for Monday when hopefully Mark's brother Phil will be here with his wife, Rosemary. Our hope is that Mark continues to remain infection-free (if there is a serious problem he may have to return to the hospital), and that we can regularly put in place a variety of small outings/gatherings to give him something to work towards.
Visiting is also much easier in the hospice than at home as visitors enter a bright, clean, tidy room (!) and do not have to fight off a needy spaniel or talk over the top of Spongebob Squarepants. Last night the church home group descended en- masse and had their meeting in Mark's room and today he was Mr Popularity and had about ten separate visits. As I was leaving this afternoon a complimentary therapist also swept in offering to slather him with aromatic oils and massage his feet (Just like home...)
Many thanks for your interest.
Subscribe to:
Posts (Atom)