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...
Wednesday, 16 June 2010
Monday, 14 June 2010
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..!
Sunday, 13 June 2010
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.
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.
Friday, 11 June 2010
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.
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.
Thursday, 27 May 2010
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...
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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Friday, 7 May 2010
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.
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.
Tuesday, 4 May 2010
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...."
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...."
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