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...

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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.

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...."

Friday, 30 April 2010

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'.

Thursday, 29 April 2010

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..!







Tuesday, 27 April 2010

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.

Saturday, 24 April 2010

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