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
Saturday, 24 July 2010
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.
Tuesday, 13 July 2010
A week on.
Mark is just about to complete his week at the hospice. It has been a good stay and he is being very well cared for. He is now no longer coming out tomorrow, and we are meeting with one of the doctors in the morning to discuss the best way forward.
On Sunday Mark was determined to make it to St Luke's Church so we planned carefully. The children were collected by friends and taken on ahead and then Simon and I went to collect Mark, who had been breakfasted and prepared in time for him to have a rest before all the activity. For Mark it was very hard work going from bed to frame to wheelchair and from wheelchair to frame to car seat and then car seat to frame to wheelchair, even with two of us to support. We sat through the first part of the service and then after about 20 minutes Mark asked to go back - it had all been too much. It was quite tough for all of us to realise that what had once been such an unconsciously easy routine had become an almost impossible undertaking. Happily St Luke's is very good at going to Mark and I know that he is hugely appreciative of his daily visits.
Other family routines rumble on. Naomi took her grade 3 flute exam today and, apart from re-inventing a few scales, feels quite confident. She then performed in a concert tonight in preparation for her school music trip to Paris in a week or so. Martha played in her York Symphony Orchestra concert on Saturday (It was cleverly scheduled to start at 7.00pm at a venue by the race-course, just as the races finished and people were tumbling home in varying degrees of sobriety. 'Entertainment' from the ridiculous to the sublime that evening... ) . Joel has been enjoying rebound therapy at school ( trampolining to you and me) and has sports day tomorrow. He is also busily counting down how many sleeps until 'the holiday house with the swimming pool' (24 -eek!!). And Basil chased a cat yesterday which was cheekily lying in our garden. Unfortunately, it was too fat to execute an immediate escape, so Basil now sports an impressive scratch across his eye and, I'm not sure about the cat but it hasn't been back...
P.S For those of you who have been asking about Wind in the Willows, Naomi's performance dates are as follows:
July: 27th 7.00pm
29th 2.30pm
31st 2.30pm
August: 3rd 7.00pm
5th 7.00pm
17th 7.00pm
19th 2.30pm
On Sunday Mark was determined to make it to St Luke's Church so we planned carefully. The children were collected by friends and taken on ahead and then Simon and I went to collect Mark, who had been breakfasted and prepared in time for him to have a rest before all the activity. For Mark it was very hard work going from bed to frame to wheelchair and from wheelchair to frame to car seat and then car seat to frame to wheelchair, even with two of us to support. We sat through the first part of the service and then after about 20 minutes Mark asked to go back - it had all been too much. It was quite tough for all of us to realise that what had once been such an unconsciously easy routine had become an almost impossible undertaking. Happily St Luke's is very good at going to Mark and I know that he is hugely appreciative of his daily visits.
Other family routines rumble on. Naomi took her grade 3 flute exam today and, apart from re-inventing a few scales, feels quite confident. She then performed in a concert tonight in preparation for her school music trip to Paris in a week or so. Martha played in her York Symphony Orchestra concert on Saturday (It was cleverly scheduled to start at 7.00pm at a venue by the race-course, just as the races finished and people were tumbling home in varying degrees of sobriety. 'Entertainment' from the ridiculous to the sublime that evening... ) . Joel has been enjoying rebound therapy at school ( trampolining to you and me) and has sports day tomorrow. He is also busily counting down how many sleeps until 'the holiday house with the swimming pool' (24 -eek!!). And Basil chased a cat yesterday which was cheekily lying in our garden. Unfortunately, it was too fat to execute an immediate escape, so Basil now sports an impressive scratch across his eye and, I'm not sure about the cat but it hasn't been back...
P.S For those of you who have been asking about Wind in the Willows, Naomi's performance dates are as follows:
July: 27th 7.00pm
29th 2.30pm
31st 2.30pm
August: 3rd 7.00pm
5th 7.00pm
17th 7.00pm
19th 2.30pm
Friday, 9 July 2010
22 years on
It is 22 years ago today that Mark and I walked down the aisle and made our vows 'For better or worse'. We celebrated in as much style as we could manage. Mark had a shower (quite a procedure) and we pored over a digital radio in a very middle-aged way trying to work out how to do the pre- sets whilst drinking cappuchinos. We have had a run of occasions lately; birthdays, father's day, wedding anniversary and through all the celebrations there has inevitably been an underlying sense of poignancy. As a few of our (much older!) friends are celebrating their silver weddings it is hard, whilst rejoicing for them, not to feel a little cheated.
Mark is doing well and managed to walk a fair distance yesterday down the corridor to have his hair cut. There is a proper salon but all the hairdressers are volunteers ( My initial uneducated fear was that they might just be a collection of enthusiastic amateurs wielding clippers, but no, they are all trained and experienced). It amazes me how much the place relies on volunteers for so many things. The gardens are also beautifully kept and are a testament to peoples' goodwill and the value which they place on the hospice. It really is a very positive and calming environment and I am grateful that we are benefitting from it.
Other trivialities: Having got used to our additional piece of furniture in the lounge and successfully won the battle to keep both Joel and Basil off it, it seems it is going to be collected on Monday and then returned again when Mark comes out probably on Wednesday...I suppose ours is not to question why. Also, It has come as a relief to us all that Naomi has, so far,managed to keep her bugs to herself. She will return to being a weasel at rehearsals tomorrow. Martha went in to see Mark yesterday and he did a brilliant job talking her through her English assignment. As I looked on admiringly he remarked. 'I should have been a teacher...'
Thanks for visiting. I will feed in updates as and when.
Mark is doing well and managed to walk a fair distance yesterday down the corridor to have his hair cut. There is a proper salon but all the hairdressers are volunteers ( My initial uneducated fear was that they might just be a collection of enthusiastic amateurs wielding clippers, but no, they are all trained and experienced). It amazes me how much the place relies on volunteers for so many things. The gardens are also beautifully kept and are a testament to peoples' goodwill and the value which they place on the hospice. It really is a very positive and calming environment and I am grateful that we are benefitting from it.
Other trivialities: Having got used to our additional piece of furniture in the lounge and successfully won the battle to keep both Joel and Basil off it, it seems it is going to be collected on Monday and then returned again when Mark comes out probably on Wednesday...I suppose ours is not to question why. Also, It has come as a relief to us all that Naomi has, so far,managed to keep her bugs to herself. She will return to being a weasel at rehearsals tomorrow. Martha went in to see Mark yesterday and he did a brilliant job talking her through her English assignment. As I looked on admiringly he remarked. 'I should have been a teacher...'
Thanks for visiting. I will feed in updates as and when.
Wednesday, 7 July 2010
All Change
Well we had just got into a fairly effective routine with our new furniture arrangement and me being attentive nurse and, for now, it's all changed again. Our Macmillan nurse suggested that it would be good for Mark to be 'in the hospice system' so as to be able to access all the 'extras '. We nodded and agreed that this all made sense and so after she had phoned around it transpired that a bed was free today and he was booked in for a week's stay. ( In my ignorance I hadn't quite realised that you were allowed to come and go).
So the ambulance was booked and I spent yesterday evening packing up pills, medical equipment etc. and off we went this morning. Mark has a very pleasant room overlooking a garden and there are lots of cheery nurses about eager to attend to every request. One of the first people we came across was the Doctor from the hospital who oversees all Mark's pain relief so that felt very reassuring. It did feel a bit surreal being given a guided tour of the hospice. It is small but well equipped and to my dark amusement even has a little souvenir shop. I think it is quite sobering for all of us that Mark is there; even Joel has begun to notice a bit more and is commenting that 'Daddy's poorly- he's gone to the hostipal'. On the plus side, Mark managed to walk a short distance up the corridor today and has a goal to make it to church on Sunday. He is also booked in tomorrrow for a hair cut so I'm sure he will be very comfortable and well cared for and hopefully he will regain some strength.
Having settled Mark in and returned home I found that Naomi was complaining of feeling ill and was not wanting to go to her Theatre Royal rehearsal (alarm bells!). Sure enough later on she was sick. I am hoping that this is not a gift she is about to share, and if it is perhaps we should be very thankful that Mark is not here. ..!
So the ambulance was booked and I spent yesterday evening packing up pills, medical equipment etc. and off we went this morning. Mark has a very pleasant room overlooking a garden and there are lots of cheery nurses about eager to attend to every request. One of the first people we came across was the Doctor from the hospital who oversees all Mark's pain relief so that felt very reassuring. It did feel a bit surreal being given a guided tour of the hospice. It is small but well equipped and to my dark amusement even has a little souvenir shop. I think it is quite sobering for all of us that Mark is there; even Joel has begun to notice a bit more and is commenting that 'Daddy's poorly- he's gone to the hostipal'. On the plus side, Mark managed to walk a short distance up the corridor today and has a goal to make it to church on Sunday. He is also booked in tomorrrow for a hair cut so I'm sure he will be very comfortable and well cared for and hopefully he will regain some strength.
Having settled Mark in and returned home I found that Naomi was complaining of feeling ill and was not wanting to go to her Theatre Royal rehearsal (alarm bells!). Sure enough later on she was sick. I am hoping that this is not a gift she is about to share, and if it is perhaps we should be very thankful that Mark is not here. ..!
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