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.