Thursday 23rd November
John:
We'd been pushing for Thursday as a release day, but it was not to be. Although a little disappointed, we could see the hospital's point of view: I was still less than 7 days after major, emergency surgery. A couple of disconnections (of tubes) had not taken place and the care package to support me back at home needed some further work. As the week had progressed, I'd grown stronger day by day and little things like having a proper shower, shave and a clean pair of pyjamas made me feel so much better about myself.
I wanted to show myself, and the staff, that I was in a position to be released, so walked round and round the ward unaided - amazing progress as only 48 hours previously I had literally only just about been able to get out of bed and into a chair. The morphine pump was removed and replaced with oral doses and liquid paracetamol, and I was increasing the amount of fluid I was drinking - coke, orange, chocolate and meals in a bottle. Not quite solids but massive progress and, if I was to regain some weight, I needed to crack on. I'd lost 10kg in the last couple of weeks.
During the day I spoke to Mark about things and getting Liz the right support to help us through the next few days - we needed named contacts on speed dial to help understand support and practicalities that I'd never considered. Over the next few days, work were very supportive with specific individuals supporting us with questions we had - and along with medical professionals - getting added to the contacts list on the phone.
Liz:
With Richard deciding to stay for a few days Mum and Dad decided to go home to make sure there were enough beds for us when John got home. I felt incredibly grateful for all they had done and I'd barely had chance to see them, and when I did I had been short tempered and disillusioned with the unpacking Mum was trying to help me with - I couldn't make any decisions or see the point in doing so. I felt guilty for being so ratty.
Around midday there was a rainbow from the hospital room window and it made me feel buoyant and positive. John's stoma had begun to work more positively now the nasogastric tube was out and it was all boding well for the future. Dr Chung, the more positive doctor, visited and suggested we could easily have two more months, even without cancer treatment.
One of the things that surprised me was how 'no nonsense' doctors can be. We asked what might happen once we were home. Dr Chung happily explained that John may just go downhill slowly as the cancer progressed, or that he might suffer another blockage, which would signal the end of the road very quickly, or that he might develop a blood clot, in which case there would be no option but to dial 999. It didn't bear thinking about - that was a problem for another day, hopefully a ways down the line.
As we took a little turn around the ward we talked about our observations of life in hospital. We had seen the same patients over several days, and it felt normal to be wandering round in pyjamas, seeing others do the same - a sort of communal dorm living where some level of normal social etiquette is willingly, and collaboratively surrendered. And, as a fairly permanent resident myself for the last 10 days, seeing other people crying in the cafe and in the queue for the lifts, I realised that other visitors had also seen me go to hell and back in the foyer. Watching the sadder side of life playing out in a way that you don't usually see made me wonder if we walk thorugh life blind, or if hospital is a strange distillation of humanity in all it's despair.
Today was the day that the anger part of the grieving process hit for me. Jenny sent me a lovely bible passage that she had seen the previous day and felt was a direct message. But I just couldn't see how John's suffering could possibly be part of His big plan. And, when you consider how many healthy over-80 year olds there are in our family, where is the fairness in the world ? We thought John had great genes and another 30 years to enjoy his retirement. Yeah, I was angry! John maintained that it hadn't affected his faith, but I wasn't sure how I could rely on it anymore.
Relaxing with a film felt almost normal, and we watched Lost in Translation. A brilliant film, it was a recommendation from Adam and Emma, and John had never seen it before. It is the film with the infamous whispering scene at the end, and of course I Googled for the answer. The result was so prophetic it was as if Emma and Adam had picked their recommendation because of it. The line Bill Murray apparently says is 'I have to leave, but don't let that come between us' - a beautiful line and perfectly timed.
We also passed some time reading the poetry book that Jenny, our sister in law, brought for John, and this one struck a particular chord with us.
After the Winter
BY Claude McKay
Some day, when trees have shed their leaves
And against the morning’s white
The shivering birds beneath the eaves
Have sheltered for the night,
We’ll turn our faces southward, love,
Toward the summer isle
Where bamboos spire the shafted grove
And wide-mouthed orchids smile.
And we will seek the quiet hill
Where towers the cotton tree,
And leaps the laughing crystal rill,
And works the droning bee.
And we will build a cottage there
Beside an open glade,
With black-ribbed blue-bells blowing near,
And ferns that never fade.
We did smile when someone rang the bell, presumably for last orders at reception!
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