14-04-12

well, it has been another of those weeks in which so much has happened i have yet not really absorbed any of it, but just got on with the practical necessities.

as predicted in my earlier post, due to the easter festivities the hospital did little to aid bh’s suffering until all the chocolate had been scoffed.
post a&e they dropped her in a room, pumped her full of morphine and ticked all the relevant boxes required to make sure that the tabloids could not scream and shout.
as i arrived on easter sunday as part of my daily visiting routine, i noticed that her name had been scrubbed off the list on the wards board.
‘is she ok, and coming home ? ‘ i inquired with a degree of disbelief as it was surely impossible she was ready to be discharged.
‘nope – we’re moving her to another ward’

the very process of the move is something i will never forget, but the detail here is not of relevance.

it turned out that the ward was the chest infection ward, and within a few minutes of bh being placed in her designated spot, she was surrounded by folks riddled with all manner of lung rattling diseases. surely not the best place to put someone who has no physical resistance to any kind of germ warfare.
i became concerned as to her well being, but there was little i could do other than hug-n-chat until the bell rang to inform me that visiting hours were now over.

the next day i took one look at bh and realised i needed to start kicking things into touch.
she looked dreadful.
i asked the nurse if i could see a doctor as bh had now been in their care for 4 days and i needed to know what the plan of action was.
and lo’ an hour later a doctor did indeed come to see us.
he agreed that things had not been too good for bh, but due to the skeleton staffing over holiday weekends his hands were tied as to options, however, he did confirm that first thing on tuesday morning he would start the ball rolling and call in the palliative care support people.
with a degree of reassurance i went home and watched the clock tick.

next days visiting hour came and the palliative care consultant, (for the sake of her ongoing involvement with the situation from here, i shall designate the phrase : kb for her) came and chatted to us.
after a few questions about the pain, recent events and such, kb nodded and said the following : ‘that’s very relevant’
she continued to ask bh various other bits and bobs.
i sat and waited for my turn.
at some in the discussion i asked ‘you said the answer re the back pain was very relevant : why was that’
and this is when the bombshell was dropped.
basically, bh has been unable to lie down flat due to the intense pain.
the pain moves about from left to right and so is not based in one place.
turns out that this detail confirms that the evil lump is now active in the lymph nodes up and down her back.
this is not something that can be ‘fixed’, all that can be done is a different family of drugs that effectively numb the nerves so bh is able to lie down and rest in more comfort.
so with this detail a plan was put into action.
following a 2 pint blood transfusion bh was to be put on a new menu of different drugs.
kb advised that she would prefer bh would remain in hospital for another 24 hours to let the blood transfusion kick in and make sure that the drugs were beginning to do their magic.

so, i headed home alone. again.

wednesday morning : kb called me to confirm that the blood transfusion had brought some colour back into her cheeks and that bh was looking a lot better,so would be discharged at visiting hours later.

which is exactly what happened.
of course there was the little matter that they had moved her to a different bed, and the long wait for the drugs to be bagged up.
kb came and explained the drugs menu, and advised that she would be wanting regular updates from the palliative care nurse who would be visiting/contacting us now on a lot more regular basis.

now, there is a little side story to all this.
a side that bh is not aware of, but i need to make a note for my own personal record.
as part of the phone conversation earlier, i had asked kb the question that cannot be asked, and kb was as straight with me as she could be.
the fact that the evil lump has now spread to the lymph nodes in her back indicates that things have stepped up a gear, with things getting progressively worse.
subsequently, the revised time line for the evil lump to complete its task is 2 months.

there were suggestions re hospice care, but bh is understandably not accepting these suggestions yet, however, it’s clear that the options are now in place.

with all this unspoken heaviness spinning in my head, i brought bh home, fed the boys, etc, and got back to the task of holding down the homefront.

come thursday though it was clear that bh was still in a great deal of pain and the new recipe was doing little to aid her obvious discomfort.

i called the palliative care team who advised they could insert a motorised syringe that would administer the required pain relief directly into the body as its quite likely that bh is not absorbing the drugs due to her lack of a stomach.

a few hours later and the district nurse turned up with a proper bloke toolbox and set about connecting bh to the coma inducing pain relief.

and so, to today – saturday : at last there does seem to be some respite from the pain, though bh has just experienced her first full on hallucination.
she shouted at the cat to stop chewing a cable in the kitchen. only problem is that the cat is snuggled up on the sofa in the living room and hasn’t moved in hours.

currently, days mainly consist of bh enduing various states of sleep, various phone calls, home visits from the relevant support systems, round trips to the chemist (who now know me by sight !), a chunk of red wine, and little else to be honest.

not an easy situation to deal with – especially when i have to maintain some degree of normality for the sake of mk1 and mk2.
but hey, that’s my ongoing duty, though twice this week i have nearly cracked.
the first was during one of the visits.
following the sound of the ‘could all the healthy people please bugger off’ alarm, i spotted a lovely grey haired couple nearby.
the frail ill old woman was walking alongside her husband, and i heard him ask : ‘may i take your hand my dear’
to which she responded with a cheeky twinkle: ‘you can take anything you like’
he giggled/smiled, as did she.
at this point i had a massive moment of realisation.
that degree of wonderful intimacy only ever comes from decades of life experience. years of unspoken humour and emotions.
something that a few years ago bh and i talked about looking forward to, and, thanks to the evil lump we have been robbed of such beautiful moments.
and seeing this lovely old couple sharing such a moment crashed my head in.
to say i nearly collapsed in a heap there and then would be an understatement.
instead i drove home, holding on tight to my inner turmoil, and set about the task of feeding the tribe.
then during the scoff session i looked to my right.
as part of my auto pilot routine i had set the table for all four of us.
and that was it.
i was done in.

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