Last words

We are just over three weeks now from Mark's service at St Luke's and, although many of you have probably stopped looking at the blog, I thought I would round things off properly. It was fantastic to see so many people there, a tribute in itself, and I think that it was just as Mark wanted it to be. It was lovely to speak to so many of you and I apologise to those I didn't manage to catch. A huge thank you to all who contributed in any way and helped to make it so special. The next day Mark's ashes were interned at St Everilda's churchyard in Poppleton and, in time we will put a small headstone in place.

I would just like to thank you all for your letters, cards, e mails and so many other gestures of support which have been thoughtful, moving, humbling, funny and all very much appreciated. We are also very grateful to the people of Poppleton and St Luke's who continue to be hugely supportive as we go back into life and its routines.

As some of you were unable to attend the service I thought it would be fitting to finish with the tribute to Mark, written by our dear friends Doug and Rachel, which Doug read so movingly at the service.

Many thanks for visiting the blog.

Mark Halliday – Funeral Tribute

Rachel and I have the difficult privilege of writing something as a tribute to the life of our beloved friend Mark.

Mark was born in Glasgow on 23 January 1964, the second son of Bob & Claire Halliday, a little brother to Paul, who would later become big brother to Phil and Simon.

He was shaped both by his upbringing within a devout Baptist home and by the fact that the location of the manse shifted between England and Scotland at different times. Fortunately, to my mind at least, the years when his accent was formed were in Scotland, so he always sounded reassuringly Scottish even after long decades in the other country.

Mark had vivid memories of his own schooldays, both delightful and awful, some of which resurfaced later in life in his poems. He was very conscious, throughout his life, of the power and importance of teachers and schools and of the difference a good education can make to a child’s life.

He was conscious too of the importance of family – and Mark was both proud of and deeply committed to the family he came from and the family he created.

As Rachel knows, growing up in a manse family has its particular challenges and frustrations – Mark coped with these, as with so many other things, by processing them through his wickedly irreverent sense of humour – but it should also be said that in all the years we knew him, he always spoke of his mum and dad with immense respect, loyalty and affection.

His relationships with his three brothers were hugely important to him. They were perhaps his closest friends as well as his brothers – and especially through his illness, they became even more precious to him, as supporters, protectors, advisers and encouragers. None of us who knew him, were ever in any doubt how much he loved his brothers – or how much they were a priority to him and he to them.

He was arguably, the best looking of them all – no mean feat given they are all lovely strapping lads. Once he emerged from under the worst excesses of his 1980s hair styles, it was clear that Mark was blessed with boy band good looks – he was drop dead gorgeous and turned a lot of heads in his time (both male and female), but although he liked to dress up, could get enthused about clothes and cologne, shirts and shoes – he was not vain – or at least not vain enough to be annoying.

We suspect therefore, that a few hearts were broken, when, while studying at York St John’s, he met and fell in love with a slim and lovely Essex girl called Mary. She could sing like a lark and laugh like a drain -

They had a shared Christian faith, a shared love of music, a dangerously similar sense of humour and a shared destiny within teaching. They were married in Upminster just over 22 years ago, on 9 July 1988.

I know it’s possible to idealise other people’s relationships from the outside – but we know them pretty well by now – and Mark and Mary, Mary and Mark – were fantastic together. They just got each other – they complemented each other – they supported each other – they fancied each other – they found each other funny – they were instinctively and naturally loyal to each other – and their marriage was wonderfully strong and satisfying for them and made them both easy and good to be around.

Of the many wonderful things which came from their marriage, the three most wonderful were, of course, Martha, Naomi and Joel – who were the dearest things in the whole world to their dad. Mark was intensely proud of all three of you and took much pleasure in your many talents (Martha’s art and story writing and wonderful playing on the piano and violin, Naomi’s singing and acting and her love of performing – Joel’s musical ability and his having inherited the classic good looks and charm of the Halliday male). Of course he was not just proud of what you did, he loved you very deeply for who you are and he had faith in who you would grow to be.

Mark was a man of faith – and as his poems bear witness, he fought back and pushed back hard against his illness over the last 5 years – he hammered on heaven’s door with his prayers – and only towards the very end did he let go of the hope that he might be healed on earth. His incredible tenacity and bravery in battling to the last was not rooted I don’t think in either fear of death or a lack of trust in the hope of heaven, it was fuelled above all by the depth of his love for those dearest to him – he found the thought of parting from you even for a while, very hard to bear.

At the core of who Mark was and what he lived for, were his faith, his family and his friends. But today we also remember how what Mark did and achieved in his life and work, were also such a part of him.

He was a musician – if you never heard him, he was a very good bass player – who perhaps never quite found the perfect band in which to express his talents. His own tastes were wide, ranging from a lingering guilty pleasure appreciation for heavy rock to a thoughtful and serious enjoyment of contemporary classical music. (Perhaps his last band Hone and his collaboration with Al, Mick and Lol was our personal favourite of all his musical incarnations – apart of course from when he played with us.)

Since it became clear fairly early on that Mark was not going to be a rock superstar (although he never fully or finally gave up hope) he was forced to settle for a career in teaching. He loved teaching and was a devoted and dedicated professional. He cared deeply about what went on in the classroom and while he could charm and impress a class as well as anyone, he always had a rigorous concern for outcomes and results. Whatever he thought about the wisdom of the system of OFSTED inspections, he worked ferociously to ensure that every school he worked in would not suffer from a bad outcome. This was rooted not just in professional pride, but in a deep concern that his pupils would be empowered and enriched by their education. He resisted the idea that an excellent curriculum would be narrow, always championing dance, music, poetry and art – and believing in their capacity to enrich children’s lives. And he was passionate about his belief that no child should be bullied, that school should be a safe and an encouraging place.

There are many children and adults now who will testify to Marks contribution as teacher and headmaster in their lives. Many parents who will bless him for his influence on their children and many colleagues who will count it a pleasure and a privilege to have worked with him.

Another consequence of the world’s failure to recognize his rightful vocation as a rock star was that Mark turned increasingly to writing poetry in his last decade. At first, he wrote more for children and these were the poems which he first shared in public. But as time went on, his sense of finding his voice and his confidence in writing grew and he wrote and read freely, poems intended for both children and adults. As with so many things in his life, Mark worked hard at his poetry, he read a lot of poetry, he contacted poets whose work he admired, he took advice from writers he respected and he returned to texts again and again, editing and polishing his work. As he worked – his poetry grew in its confidence and its reach – and when he became ill, it became a vehicle for celebrating life, for exploring the mysteries and banalities of suffering and for crafting a spiritual response to life and death.

His work addressed both the tragic and the comic with a clear and unrelenting eye, with a lightness of touch and with an obvious compassion.

A particular source of joy and inspiration for him, were the creative collaborations he had with others – working with Cole Moreton and Martin Wroe on the Can you hear the music collection and subsequent readings, working with the Now faith collective for Greenbelt 2009 and working with Melanie Sims on a joint exhibition of poetry and visual art. He was deeply honoured by Malcolm Lindsay’s musical compositions linked to his work and his last, painful journey to Glasgow was a pilgrimage to hear a performance of the music based on After the Snow – for me one of his finest poems, written to honour Ali Adeney Lawrence, with whom he had shared some of the journey of living with cancer.

Mark’s life was bursting with its own creative energy but he also maintained a lively and generous interest in the work of others. It’s what made him so good to work with; his own self discipline which produced such high quality results – his humility which made him willing to revise and collaborate and his deep generosity and commitment to the work of others.

For many here Mark was not a family member, teacher, fellow band member or resident poet – he was just your friend. And what a friend he was. Intensely loyal, a virtuouso texter who was always willing to reply to a text at most times of day and night – a good listener – a comforter in times of trouble and a counsellor in times of confusion. For us as for many others, he was always hugely supportive in ways we shall always be grateful for.

And even on this saddest of days, we could not pay tribute to Mark’s life without talking about how he made us laugh. Mark was one of the funniest men we have ever known – lots of people can make a quip which brings a smile to your face, Mark could make you laugh until you cried, your sides hurt, you were on your knees beating the floor with your hands and you thought you might actually wee yourself in public. He had an extraordinary capacity for observing other people and commenting on them, Lord knows what he said about all of us to one another – he could be appallingly, worryingly risqué and completely, uninhibitedly outrageous – but he did it all with such a sure sense of irony that we at least, never lost faith in either his purity or his kindness, or his good judgment.

Mark’s capacity for excess spanned his willingness to follow through with outrageous and unreasonable forfeits after losing at cards to the Barclay Terrace boys – it saw him for similar reasons jump naked from a barge into a frozen canal one New Year before the children came along and just this past new year, despite finding it hard to sit or walk without pain, it drove his attempt to break dance before the bells in the living room at Knockbrex.

Even when times were hardest, and there have been more than enough hard times in recent years, Mark still laughed with us and made us laugh – him and Mary laughed and cried together right to the end.

Mark saw himself as blessed and this made him a blessing to others, he saw himself as someone who had been given a lot and that made him able to share a lot with others. He loved his family holidays, his trips to Betty’s, his Greenbelts, he loved his weekends away with the brothers and the flat reunions, his treat hotel breaks with Mary. He loved watching his girls perform.

He loved life and he enjoyed life.

He wasn’t of course – completely perfect. He had an anxious side to him which surfaced particularly when he was a passenger in someone else’s car, but could be seen at other times as well. Like all of us he was sometimes impatient and irritable – in particular badly behaved dogs and badly behaved children in public places could drive him to distraction, as could unreasonable parents at his various schools – but for the most part he was as gracious and even tempered a man as you would want to know. In particular, the grace and dignity he showed throughout his illness was humbling and a tribute both to him and to Mary who gave him such tender and devoted support.

In all the time we knew him, Mark was very clear about what centred, grounded and anchored his life. He was a Christian whose faith was, right to the very end, a constant and an essential part of his life. His involvement in church communities in Kettering and York was very important to him over the years. He gave thanks for all the goodness in his life and when he got sick, without presuming that he deserved to be healed, he was not prepared to let God off lightly – to quote another poet George Herbert on prayer, prayer is an ‘engine against the almighty’ – Mark, like Jacob of old, wrestled with God through the night, until he walked away limping. The blessing he received in the end was not the one he or any of us sought or wanted – and for many of us, our arguments with God over it will have some way to run, even if they are not expressed as poetically as Mark’s were.

Mark died in York, in St Leonard’s Hospice, early on the morning of August 2^nd 2010 – with Mary at his side.

His death has been a very great loss for all of us who knew and loved him and we will miss him more than words can say.

Arrangements for the Service of Thanksgiving

We have now finalised arrangements for a service of thanksgiving for Mark. It will take place at 12 noon on Tuesday 17th August at St Luke's, on Burton Stone Lane, York. The service of thanksgiving will be preceded by a commital at the crematorium for family only.

A map can be found on the Church's website (http://www.stlukesyork.org/). Please note that parking around the church may be fairly scarce relative to the numbers attending.

Following the service there will be some refreshments available in the church hall.

Simon

Mark Halliday (23/01/64 – 02/08/10)

Mark died this morning at about 7.40am. I was with him when he went. We were sleeping side by side in our hospital beds and I awoke as I became aware of silence. I think he had stopped breathing moments before and he left gently and peacefully.

As you might imagine, today is a significant moment in our long and unfinished journey of letting Mark go and grieving his loss. This difficult process has been made easier by the many gestures of support and kindness from Mark’s friends. We are grateful to you for that.

There will be a service of remembrance for Mark at his church in York, St Luke’s. Although the precise arrangements are yet to be made, it is likely that it will take place in the week commencing 16th August. Further details will be posted in due course. In the mean time myself and the children, Philip and Rosemary and their family and Simon will be taking our break in Devon from 7th; Joel has been counting and we are now at 5 sleeps...

Mary

No change

This is a further short note to say that there is little change in Mark's condition. He has been a model of resilience throughout his illness and continues in much the same vein despite the doctors' best estimates of the scheme of things.

There have, however, been some changes in the wider context. Mark's parents and his brother Paul have had to return to Scotland, whilst brother Philip has returned to France for a short spell. Martha has boldly gone to explore the frontiers of the Scottish borders and her own tolerance of outdoor pursuits. She set off yesterday for a week's youth camp.

Mary continues to spend most of her time with Mark at the hospice, though Rosemary (Philip's wife) and I take turns in giving her time back at the house with the children. This interim period, with life suspended in many senses, has been a little unsettling for everyone, particularly the children.

Further posts, no doubt, in due course.

Simon Halliday

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

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

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

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

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!

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.

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.

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

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.

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. ..!

A step too far...

Mark is now at home having been 'released' on Friday afternoon. He steadily responded to the antibiotics, the hallucinations disappeared and his appetite returned. The problem has been put down to infection possibly combined with an increase in the morphine dosage. He is over it now, but on returning home it became clear that so many days in bed had weakened his legs still further. We braced ourselves for the stair climb in the evening and, although eventually successful, it became apparent that it was no longer safe or possible to continue to try.

After a series of phone calls this morning we took delivery this afternoon of a (large) hospital bed with all bells and whistles, and shoved aside a sofa in the lounge. This has all happened very quickly and obviously changes the dynamics of the house in a way that is necessary but not desirable. We had talked about converting the downstairs cloakroom and putting in a shower at some point so that a downstairs move would be possible, but we have been slightly overtaken by the situation. It is definitely more comfortable for Mark on the bed, than on the sofa and the kitchen/lounge is the hub of the house so hopefully he will feel in the midst of things - the problem might be that he can no longer escape..! Here are some birthday photos:

Do not pass GO - Go straight to 31

Apologies for the delay and also for the lack of the promised photos - they will appear but this last week has been quite full-on. Just to catch up. Mark went in to have his hickman line removed which was relatively simple and, trying to be positive, presents one less potential sourse of infection. However, a routine blood test showed that his haemoglobin levels were half what they should be so he was booked in for a transfusion the following day. We arrived for 10 ( a big effort for Mark) hoping for a prompt start. Ordinarily the blood would go down the hickman line but, in it's absence, the nurses were struggling to find a vein. It took 5 attempts, 3 people and just under an hour to get going and then the whole procedure took 7 hours. 'Draining' is perhaps the wrong word but does sum up the experience.

Over the following days Mark seemed very lethargic and tired, and often at night his temperature would go quite high but then come down in the morning. It is not uncommon to have a reaction to a transfusion and I had a sense that something wasn't quite right, but the lack of a constant high temperature was confusing for someone who likes simple signposts.

On top of this, over the course of these few days we had a number of separate unprompted conversations with Mark's consultant,the physio and our Macmilallan nurse. These were all very much guiding us to thoughts about 'final stage care'. However academically we understand the situation it is very different to engage with this emotionally and we both felt slightly shocked by the starkness of the realities we are facing and of the decisions we are now having to consider.

Nevertheless, the weekend looked promising. Mark had resigned himself to not making the Solas Festival in Scotland so his brother was coming down instead - (all are heartened by a visit from Uncle Simon.) It was also Martha's turn for birthday celebrations including a sleepover with her close friend on Saturday night followed by a day at Flamingo Land. On the Saturday, with Simon leaving in the morning, I was beginning to feel anxious about leaving Mark for the possible 2 hours it might take to get to Flamingo Land and back. He was very lethargic and would also go into a dreamlike state where he would talk - a bit unnerving- but still no temperature.

Our friend Tina came to the rescue and early ish on Sunday morning managed to combine delivering the girls and leading a church service with efficient ease. She also came round while I later collected them. (While much of the nation was plunged into sporting despair Martha and her friend aligned themselves with many Scots and had a great celebratory day. They experienced few queues and to my joy the roads were also pretty empty.) However, I returned to find that Mark had deteriorated. His dreams had turned into full blown hallucinations and consequently his behaviour was bizarre.

Tina and I both agreed we needed medical help, and thanks to our Macmillan nurse who had set us up with a weekend emergency care arrangement we phoned ward 31 directly. An ambulance was called and we went straight to the ward. The jury is still out on what is happening. Some kind of infection is most likely and so Mark is back on the intravenous antibiotics but there is also a question over the morphine in his system and whether that may be a contributory factor.

Yesterday was Martha's birthday so the set is complete and Mark has been in for everybody's birthday but his own! We visited in the evening and she had a good day, although such was Joel's enthusiasm for helping her blow out candles that we had to light them three times so she could get even get within blowing distance!

Mark is doing ok although is off food and is quite uncomfortable. I know he will receive good care there but basically, of course, he wants to be stable and at home.

A few days on

Just a quick one to keep you up to speed. Mark is doing ok here at home but is still struggling to do fairly basic things as his energy levels are so low. We haven't ventured outside yet and he is spending much of each day sleeping or reclining.

My frustrations with our most recent hospital experience have been further compounded over the last couple of days. Yesterday I had to take a journey up to the hospital as Ward 15 had forgotten to provide us with the necessary equipment for the district nurse. I ended up poring through items in a store cupboard with the Staff-Nurse trying to match an item with a picture from my camera phone. Then during today's visit from the nurse she was unable to flush Mark's Hickman line (used for taking blood etc. instead of constantly using needles). This was because it hadn't been done when he was on the Ward and now he needs to go in tomorrow for another procedure to have it removed.

Having spoken to various people it does seem that something was amiss regarding Mark's admission and, as an oncology patient, he shouldn't have had to wait hours in A & E and his consultant should have been consulted! Mistakes happen but we are taking steps to make sure this doesn't happen again.

Hopefully I shall engage the teenagers in the next couple of days to put up pics of some jolly moments!

Lunchtime call

I received another call from ward 15 at about midday today - always cause for the mind to race. However, this time I was told that I could come and collect Mark at any time...This was a total surprise as there had been no clue that this was on the cards at all. I duly drove down and packed up his things and wheeled him down to the car - All very quick, especially as we didn't even have to wait for pharmacy.

It is, of course, great for us all to have Mark home. However, he is still very weak and fragile and it will take a little while for him to build up his strength again. stair-climbing and generally getting about are pretty hard work just now. Naomi is making it her business to build him up with her extra rich chocolate birthday cake...

update

Just a quick update. Mark had a better night last night and has managed to eat a little. He is also off of the oxygen and is generally a little more comfortable. For now he is being kept on Ward 15, however, he has been moved to a room of his own which is a significant improvement. There has also been some communication between departments as one of his oncology/pain relief specialists dropped in to see him today. As someone who doesn't understand the workings of the 'hospital machine' I felt reasssured, just because familiar people are becoming involved in his care again. It must be said that my own anxieties are probably no reflection of the level of care he is receiving but just the confused concerns of a stressed spouse..!

Be careful what you wish for...

Well it's very possible that my yearnings for W31 may be fulfilled, but unfortunately for all the wrong reasons. I had another alarming phone call from the hospital at 6.15 this morning asking me to go in as Mark had had a very bad night. The procedure, while successful in itself, had in the doctor's words 'stirred everything up' and an infection had taken hold. He had had virtually no sleep,his temperature had gone up to 39.7 and his pulse was racing. He had been given fluids, oxygen and some powerful antibiotics and, thankfully, over time his temperature did come down and he eventually managed to get to sleep. I have been gently questioning whether he might be transferred to ward 31 so that he can be on a ward where he is known and all the intricacies of his case history are familiar. I am not alone or original in my thinking but there is obviously protocol to be observed on the wards and, being a Sunday, no one is going to make any radical decisions. I am hopeful that he will be moved for many reasons, not least the rigorous infection control regime which happens on 31, in contrast to 15 where it amounts to a voluntary blob of hand gel 'if you're passing a squirter'

Other family news: Naomi, Alice and I had 'a blast' at Lightwater Valley. The sun shone, the queues were fine and a great time was had by all, although I have to acknowledge that I am now too old to be spun around at speed after a sandwich. Martha had fun in town with her friend (and I'm sure also spent time bonding with her biology revision notes) and Joel apparently threw himself into the dance workshop with 'flair and enthusiasm'. So most of our hopes for the weekend were fulfilled, and I'm particularly pleased that Naomi's trip was a success as Mark will not be home for her birthday on Tuesday. So with all our hopes now focusing on Mark, we are obviously keen for the infection to remain under control and for him to remain stable and make a steady improvement.
Many thanks, as ever, for your support.