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.

Oh for Ward 31...

Back in for a (hopefully quick) hospital visit, but we've managed several hospital-free weeks and so feel that we have had a good stretch of quality time. My first week of not working has reinforced the fact that it has been a good decision. We have had a very unambitious schedule and have done minor outings and lots of sitting about drinking tea, but it has felt good that I have been here to drive and help and just be around. I have also managed to do many overdue jobs that didn't get done before because they weren't desperate (cut the grass/pair-up socks/feed the guinea pig.) I am also beginning to get a faint and tantalising sniff of what it might feel like to be in control of the house...

On to the important stuff: Mark had been feeling very tired for a few days and, as yesterday went on, he began to feel quite uncomfortable. We had a visit from the district nurses and we all steadily began to suspect that his stent was no longer working. After the familiar drawn-out round of phone calls to the emergency GP (who curiously decided to send another pair of district nurses to see us) we went down to A & E.at about 10.00pm. There was much waiting as the GP had chosen not to pre book us in(?!) but blood tests and scans proved the suspicions about the stent to be correct. By 1.30am we both felt I should get back, feeling that Martha's babysitting duties had perhaps been exploited. I left Mark in his little booth where he stayed waiting until about 5.30am when it clearly became a good time to move him onto the ward.

I went up at visiting time this afternoon to find that he was away having his kidney draining procedure done, so caught up with him again this evening, although, given the sleepless night in A&E and the operation today he was quite exhausted. The procedure had been pretty painful and unpleasant, not helped by the fact that he had been given a new morphine pump (compact and swanky but unfamiliar) and thought he had given himself an extra shot for the operation, but actually hadn't. It appears that, miserable as it was, the op has been successful so we are hopeful that a day or two of recovery should see him home.

It has to be said that we are nostalgic for Ward 31 with it's bespoke movable beds, dvd/tvs, air-locked doors, rigorous cleanliness routines and attentive staff. Ward 15is a more basic and stark environment and also feels much more casual which I find slightly unsettling.

I am off to Lightwater Valley theme park tomorrow with Naomi and her best friend for Naomi's 'birthday party', and Joel is spending all day with Nick and Pat (his sharing care family) for the first time, which will include them taking him to an N.A S.dance workshop (they are true gold!) Martha, I'm sure, will spend time revising and possibly manage to fit in seeing her friends... Hopes then, that tomorrow is a positive day for all, but especially that Mark stays infection and pain free and continues to make a good recovery.

Well, I have almost been out of hospital for 3 weeks without any recurrance of infection. A couple tried but were beaten down by antibiotics. So, I have managed to enjoy visits to Betty's, town and a fun filled weekend in York with my brothers. I am on a continuous low dosage of antibiotics so this, I hope, is doing the trick.


And so, on with new and exciting things on the horizon! This coming Thursday I travel to Glasgow to hear a performance of music written by composer Malcolm Lindsay and in response to some of my poems. This is a first for me and all very exciting. I also hope to be well enough to do a reading at the Solas Festival. This is a new arts festival running from 25th - 27th June in Wiston, Biggar, South West Scotland.

Naomi has gone Up the Yellow Brick Road and Over the Rainbow and loved every second of it. If you also heard distant shrieks of joy last Saturday it is because she eventually got her letter confirming that she has a part in the Theatre Royal summer production of Wind In The Willows... and so has her best friend. Martha and Joel are both well, with Martha spending most of her time drawing and Joel spending most of every evening running barefoot in the garden and singing/yelling the few tunes he knows at full volume. The neighbours haven't moved ... yet.



The biggest development is that Mary is taking a few months off work. We are both very unsure about what the next few months will bring us, but as I have deteriorated at a gradual pace this last year, we both felt that having time together is going to be the best way of facing it. She also just has too much on her plate. Both the schools she works for have been very supportive and so this has made the decision easier as she completed her final day today- a day of mixed emotions.

Thanks, again, for visiting the blog and for the ongoing support which has taken many forms. We never take it for granted. I am now going to go and take it easy in an effort to stay infection free and out of hospital. Will let you know if it works...

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There's no place like home...

Apologies for the blog silence, but as you may have guessed 'no news is good news' and Mark is finally home. Everyone was finally in agreement that Wednesday would be release day so I went along after work at 4.00pm as planned. However, Pharmacy love to play their game of suspense, and so, with other family member commitments looming, I left and returned later in the evening when summoned. We finally arrived home at about 7.30pm.

Mark is pleased to be home, although initially felt a little vulnerable having become used to a constant team of very attentive nurses at his behest (one a little too attentive, it has to be said - and not in a good way...!) It is reassuring to know that, at least in the short term, the various specialists from the ward are only a phone call away.

Mark is taking things very easy, having been in bed for a fortnight, and many tasks require a fair bit of energy and planning for him. Various mysterious looking gadgets for putting on socks, levering yourself out of cars etc. appeared upon his release, although having them all to hand at any one time would require a robust rucksack. I am trying to relearn the new combination of daily pills and am trying not to become a neurotic re- checker/counter. We are sitting in our newly landscaped garden now which is a sourse of great relaxation and satisfaction. (This was not something I did in my spare time- we had a man in)

Life continues for everyone in a normal ish fashion. Martha has just taken GCSE mocks with generally pleasing results, and is continuing to probably spend a disproportionate amount of time drawing and playing the piano. Naomi is heavily into rehearsals for The Wizard of Oz, taking place at The Theatre Royal in 3 weeks. (Hence blog title - it's inescapable for us- In addition to countless rehearsals we have munchkin, Ozian and flying monkey constumes trailing up the bannister and 'Search for Dorothy' compulsory viewing at the weekend.) Joel is still happy at school and is very settled with the Saturday afternoon trips to Nick and Pat, an absolute lifeline to us. I have just returned to pottery today - a welcome refuge providing creativity and frequent hilarity, if not glorious objects d'art.

The Poppleton cooks are still providing us with great and regular meals and there is party of 20 from the village all turning out to see Naomi in the show. We also feel very supported in so many other countless ways, so blog readers, Thank You All.

One more day...

We were full of anticipation for Mark's release today as we were told by the doctor yesterday that he would be out. So much so that I took a day off work in order to be on hand at the appropriate time - (always very approximate). However, I think there was a case of 'too many cooks' as the consultant today said that he needed to have 24 hours off of the intra-venous antibiotics before coming home- and he was still hooked up this morning.

Disappointing, but his care is pretty faultless, so one more evening watching a few more episodes of The Sweeney will be manageable for him. The revised plan is for me to collect him after work at 4.00pm tomorrow, pharmacy permitting...

He is doing pretty well and is infection free, although is still lacking in energy and spends much of the day lying down. He does manage to walk short distances to the shower etc. so hopefully he will be able to potter happily at home and muster enough energy to throw cushions at Basil when the postman comes.


"But they said it was today...."

I am just back from seeing Mark and can report that all went well with the operation. He was trundled down to the theatre waiting area fairly promptly at about 3.30pm and I was allowed to wait with him for a little while. As I sat my eyes fell upon his chart which was an inscrutible list of numbers and drugs. I was suddenly struck by a wave of confusion as I saw the words THE PATIENT IS OF AFRO CARRIBEAN ORIGIN at the bottom of the chart, followed by instructions for drug doses. Slightly alarmed I found myself imagining all sorts of identity horrors and glanced at Mark (very definitely white Scottish) and at the chart, which unquestionably had his name at the top. It was only when I pored over it that I realised, with relief, that a medical line had been obscuring the word IF at the beginning of the sentence....

Just to keep me on my toes, when I returned for evening visiting a good three hours later Mark had still not been returned to the ward and no one seemed to know why... More rampant imaginings ensued on my part. In the end it was simply that the operation before his had taken much longer than anticipated and Mark's had been quick and straightforward.

There was talk today of him coming home on Tuesday so he is feeling altogether much more positive and, when I left, was putting goals in place for standing, showering and walking over the next 24/48 hours. These last few days have been quite a rollercoaster and we hope that, in the words of many an unexciting school report, he simply continues to makes 'good steady progress'.

2 days on

I have just come back from visiting Mark. He is much more stable and the breathing problems and infection appear to be under control. He has been very tired and lacking in energy since Tuesday' s episode but managed to stand today for the first time. He is due to have an operation tomorrow at 3.30pm which is causing him some anxiety-he doesn't have a happy record as far as these things go. It is to fit a stent into his kidney (I thought he already had one, such is the limitation of my medical understanding, apparently that was just a tube (?)...) He is also a bit fed up and beginning to feel that he'll never escape from the bed and the ward but hopefully if he continues to improve in the same way his 'release' will become a more tangible prospect. He is anxious for me to pass on his thanks for texts etc. He is finding it difficult to respond at the moment- the focus and dexterity required is quite demanding.

If I can tear Martha away from Glee she will now put up some photos of the weekend so watch this space..!

Morning Call

In the midst of the usual morning mayhem in our house I received a phone call today from the staff nurse asking if I would come into the ward. He said that Mark had had a very difficult night and that I didn't need to rush, but should come as soon as I could. . . Unsure exactly what this meant, or what to expect I pressed on with packed lunches, calls to work, school buses and traffic and arrived about 45 minutes later to comparative calm on W 31.

It seems that Mark had indeed been in some trouble. His temperature had spiked up again and his heart rate was very high. He had been given extra fluid to help the problem with the kidneys ( a successful approach) but that had led to an excess going into his lungs which was making his breathing very laboured and wheezy.

By the time I arrived the immediate crisis was over and the problems were largely under control. I stayed until late afternoon as Mark slept and people quietly drifted in and out measuring, writing and examining. I was reassured that 'Things are going in the right direction again,' although clearly he is still vulnerable.

On a slightly cheerier note all of us managed to make it to the big house for the Golden Wedding celebration and, although painfully aware of Mark's absence, a good time was had by all. The girls greeted me with stories of Saturday afternoon football and rounders games and were clearly delighted to be with their larger family again. Joel was slightly put out that there wasn't a swimming pool (as there had been in 'the other holiday house') but managed to take some comfort from eating large amounts of sticky toffee pudding...
Hoping here for a little less drama over the coming days. Thanks as ever for visiting the blog.

Returning to Ward 31

Firstly, sorry that I'm a bit behind with this. The last couple of days have been quite full on. As the title indicates Mark is back in hospital with some kind of infection, same ward, same staff, same patient in one case, different bed. He had felt that something was brewing for a few days and we went to see the G.P earlier in the week, but as there was nothing obvious and no rise in temperature she didn't recommend any action.

On Thursday morning, from about 5 a.m Mark was very restless and confused. Also being quite confused at that time in the morning, I wasn't very pro active, but after an hour or so I took his temperature, which at that point was ok. We continued with the morning school/work routines, although Mark was continuing to be very confused which was becoming worrying. He was then sick and the next temperature reading was 39.5. At this point I opted for the local GPs, who know Marks case well, and, once I'd managed to get through, the doctor appeared quite promptly. He decided that hospitalisation was necessary and an ambulance duly appeared which caused a little curtain twitching in our quiet street. Once he was in, the temperature came down and he was put on various drugs and drips. I felt relieved that he was in good hands and could only sit and ponder the limitation of my own instincts and inadequate fumblings with a Boots thermometer.

The usual investigations are ongoing as to the exact nature of the infection but it appears to be in the blood and the kidneys. Yesterday he had a small operation to put in a stent. This appears to have been successful although, as is typical with Mark's misfortune with pain relief, the anaesthetist didn't get it quite right and he was struggling during the latter part of the procedure.

It is rather sad timing for all the Hallidays as it is Mark's parents' Golden Wedding celebration this weekend and all the brothers and families are over in a big house (which Mark booked) near the lakes. The girls have gone up and I will do an overnight with Joel after visiting this afternoon, but Mark's absence will be keenly felt, most of all by him.

Thank you for your interest and support; I will try my best to keep you updated.

Mary

Well, happily I am still infection free. My health has been good since leaving hospital and I have been able to get out and about. It's not all plain sailing, however. My consultant confirmed that the scan showed deterioration. There are more tumours in my lungs and a new one on my sternum, which is painful and slightly raised. The ones in my pelvis are also larger. For this reason, he is voting to discontinue all treatement - certainly for now and probably for good, unless I turn up suddenly incredibly improved. It is difficult news, to be honest. At least when you are having treatment you feel that you are doing something that might work! We now have a sense of just waiting for things to get worse.

To raise stress levels further, my school has just undergone an Ofsted inspection. I decided with the Governors that it was best if I didn't go in. I have been off since the end of January and have therefore lost touch with the new initiatives that have been introduced. It was very difficult! I had to more or less strap myself to the sofa. We were judged to be a 'Good' school with some 'Outstanding' features. It was what we were all hoping for and so it is relief all round.

Lastly, Mary and I enjoyed a fantastic couple of days in a luxury hotel, as my brother Phil and his wife Rosemary were over to look after our children. It was a great time and we returned feeling much more relaxed. Fantastic!

I will leave you with a couple of poems that I have written in the past month. Thanks again for visiting the blog:


Sorting

Down to counting months,
we sort through my wardrobe.

I try to call judgment from the bed
on running shoes, tracksuit,
redundant items
bought for a healthy body.

They hover above the charity sack
wide beside us
before being laid back
in their place.

Dropping in a few token tops,
a shirt too baggy for my shrunken frame,
we make space for the clothes you’ve just bought me-
that jumper for next year’s winter,
a shirt for the summer holiday we are planning.




Ward 31

Exhibited in a ward,
mounted on a mattress.
His rack of ribs shrouded
in a light blue gown.

Half words
carried on a draught of breath
fall
out
between dropped-marble-tin coughs.
A son leans in to catch,
disentangling meaning from
the rambling bramble-bind
of pain relief.

His face remains
a mosaic mask
as a nurse relates loudly
the non-events of the day.
I look, as the one-time
son, lover, husband,
grafter, manager, coper,
disappears behind
a slowly-drawn curtain.

Escaped

Mark here. I was discharged this afternoon and am very happy to be home. Our family life is actually quieter than the ward! The man next door to me wanted to tell me all about an autistic adult he knew and it really was an exceptional account in terms of length. I had just held my breath, turned blue and dropped senseless to the floor just to make it stop when ... it did! He took a break. I got up, lay back, stretched for my book when he said, "Now, as for his sister ..." A difficult time.

I had a pretty heavy conversation with my consultant this morning. It turns out that I was much more unwell than I realised and the septicemia proved very hard to shift. He doubts that I will receive more chemo because he doesn't think my body will be able to fight the infection if it returns when my immune system is low. To be honest it makes me feel very vulnerable indeed as I caught this infection from one of my tumours and I need to stay free from infection in general and this one in particular. Anyway, for now I am enjoying my new found freedom and it is great to be back with the family. Betty's here I come!!

Birthday moments

A short update: Mark has been moved back onto the ward, but he won't be bored because the man next door loves to chat...Also it was Joel's 9th birthday today so here are a few photos including a special father/son time, and Basil having a pensive moment missing his master.

Hanging out on ward 31

Things have thankfully been a little calmer since my last entry. Mark has a new morphine pump, which is working well, and the balance seems to be adjusted correctly which is a big relief. He came off of the intra-venous antibiotics but the infection quickly powered back and so he had to be re-attached. In a day or two the oral anti- biotics will be tried again and then it will depend how Mark responds as to whether he will be allowed home. We're holding out for Thursday at the moment. As you can imagine he is quite fed up, desperate to be well enough to be 'free' and very eager to come home. He is missing his on-line contacts but has been cheered by his many visitors. (We continue to hope that the population of York remains healthy so that nobody more ill will need his room...) I also hope that you may read the words of the weary poet himself on here in a few days..!

Snakes and Ladders

We are feeling a little one step forward and two back at the moment. Mark continued to leak from the port and it was decided to re-do the operation. This was scheduled for mid morning on Tuesday so he was nil-by -mouth from Monday night. When I went in on Tuesday at about 4.00pm the operation had still not happened. He was desperately hot and thirsty and also uncomfortable as he hadn't been able to take his oral medication for many hours. At about 5.00pm he went down to theatre and I returned at 7.00pm to find that the operation had apparently gone well but he was still in recovery. At about 8.00pm it was felt that he had stabilised and Mark was returned to the ward, but things deteriorated very quickly. It became apparent that the pain relief was either not working or was ineffective and he was quickly struggling. He was given oral morphine and his usual oral medication but nothing made any impact. At this point I think I became a gentle nuisance as Mark tends to suffer fairly quietly. The anaesthetist was called but was in theatre, so someone was dispatched to A and E to fetch some gas and air and after a while a doctor arrived. Alarmingly he looked about 13, but was clearly capable and decided on some intra- venous morphine - which then had to be mixed up... This was all very distressing as Mark was quite desperate and everything seemed to be taking ages. He was in acute pain for a long time. Finally Doctor Toomey (consultant anaesthetist) managed to break out of theatre and come to our aid. He quickly sent an anesthetic down the newly laid tubes and relief finally came just before 10.00pm
The night was quite calm and the new pump has been adjusted to give a greater concentation of morphine and to allow the boost option more frequently. However, Mark's temperature went up over night and there are more concerns about infection so now he has been told that he needs to stay in hospital for a further 7 to 9 days... On the positive he does now have a room of his own and is happy to receive visitors!

(Please forgive my apparent neglect of many e mailers and texters- all contact is appreciated but it may take me a while...)

Moving on

Things have moved along a little. Mark appears to be fighting the septicaemia successfully and it is now being targeted specifically with just one antibiotic. He is feeling quite well in himself, although his haemoglobin levels are still low in spite of blood transfusions. The main concern now is the issue with pain control. Mark had a very bad night on Saturday with escalating pain. It turned out to be the morphine pump which was steadily running out of battery power...The fact that there is no warning system in place is a rather disastrous design fault.
Having sorted that there was further alarm when there was a leakage of spinal fluid out the port in Mark's abdomen.This has lessened, although It now appears that the anaesthetic is leaking which accounts for more increased pain. If this problem does not sort then the operation will need to be re-done after all. This all adds to Mark's frustration as he is very keen to come home, get back on track and begin the chemo as planned.
Back at base we are managing pretty well although we seem to be banking up practical niggles; We have an MOT-less car, a toilet that won't flush, a broken pipe outside which gushes onto the window when the sink upstairs is emptied and today Joel attempted to recreate a spiderman moment by apparently scaling the chest of drawers, drawer by drawer. This led to an almighty avalanche of books,dvds,dvd- player,tv,drawers and chest. Thankfully, and perhaps miraculously, Joel escaped with a few bruises and an impressive black eye...I was grateful for a visiting samaritan who came armed with lemon drizzle cake, a willingness to shift furniture and instant contact with a nurse (just for reassurance...!) Thanks for visiting the blog.

The good, the bad and the ugly

Let's start with the good: Mark had an x-ray done today and it seems that the needle into his back is actually in the right place after all. The conclusion is, that after the initial positive response, his body became almost accustomed to the dose and so it became less effective. So the dose has been increased and the operation does not need to be repeated. He was walking up and down the ward today so it does appear to be working better so far. He has been moved to the oncology ward nicknamed 'the hotel suite' in part, because every patient has their own TV/dvd player, so he was pretty pleased about that. The bad bit for Mark is that he will miss both of his longed-for 'jollies' as he needs to stay in hospital probably until Wednesday. The reason for this is that he has contracted septicaemia. This is obviously more serious than we thought and he is being treated with four antibiotics at the moment. There is some concern, which is hard to digest when he is sitting up eating pizza, as he was tonight, so we need to hope that he continues to fight the infection successfully and that he can come home next week as planned. Many thanks for your support.

Pass the Patient

Just a quick update. Mark went in to work today to meet with his deputy and teach a literacy class. He found this quite exhausting but dashed home to meet with the physio who has cast his stick aside and replaced it with a crutch. (he feels this is slightly more racy -he can pretend he has a sporting injury...) During this meeting he became noticeably weary and so the physio offered to take him to his next scheduled appointment at the hospital to have a bone infusion. During this procedure he deteriorated further and so after some tests he was transferred to the acute medical unit. It appears that he has some kind of infection and so has been wired up to various drips and tubes. He is improving and seemed quite comfortable when I left shortly after eight. Dr Sebag Montefiore is in York tomorrow so I think the doctors are hoping that he will come and offer his perspective. Mark was also due to see Dr Toomey tomorrow about his malfunctioning morphine-pump so hopefully that will also happen, although it is doubtful whether they will operate while he is still below par. This is still quite problematic as he is regularly in quite a bit of pain.
Through all this, one of Mark's chief concerns is that he may miss his head teacher's conference and/or his weekend in Glasgow... He is hoping very much for fast resolutions. We will keep you posted.

This and That

Just another quick update. First the good news: My brain scan looks to be clear and I fall into the category of 'normal'...(No jokes please) This is a relief and the first actual good news we have had for a while. The bad news comes in two parts. Firstly they are going to have to re-do the back operation completely because they suspect the needle in my spine is not sufficiently far in. This means that my pain levels are still high and I have had to resort to using a stick, so I am keen to get it fixed. Secondly I start chemotherapy on Monday for another full course. Although I am not looking forward to this I am hoping it will keep the spread at bay.
On a happier note I have just spent a great weekend in Glasgow where I did a poetry reading. My two sets were interspersed by excellent music performances and it was a great evening. In fact next weekend I am hoping to be back in Glasgow reading poetry on BBC Radio Scotland and attending the premiere of music written by Malcolm Lindsay (Television Society Award winner). His music has been written in response to three of my poems. I feel honoured indeed.
Let me leave you with a couple of family photographs in which we look better than normal, and bordering on alright.

'Up'

I am happy to be back on my feet and possibly owe this to the steroids that have been introduced to my cocktail of drugs. Last week I was in hospital having a small operation on my back. It went well and morphine is now targeted specifically to the nerve sensors for the lower body. In other words, my head is a lot clearer. I have developed a tendency to headaches which is possibly a temporary side effect of the recent operation. The solution is to lie on one's back . . . tricky in Betty’s. On the subject of my head, my consultant is not fully persuaded that my brain is clear of the disease and as a result I had an MRI scan on Monday. I am awaiting the results and will of course let you know.

We are continuing to receive great support from our friends in Poppleton, meals, lifts, dog walkers and flowers have been forthcoming in adundance. We have also been very touched by messages of support from so many of you as we try to live as normally as possible in the circumstances.