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.
