one final time :
"g’night babe, love you lots"
rest in peace.
one final time :
"g’night babe, love you lots"
rest in peace.
time for a quick update to help me remember.
following thursdays nightmare, i decided it best to check if ok to take mk1 and mk2 to the hospice on saturday.
so, we got up, packed a picnic, various gameboys, and set off.
and all things considered, the day was quite pleasant (relatively speaking), despite it being clear that things were getting worse.
still, at least the lads got a chance to tell her bits-n-bobs of their lives.
since then the daily routine has kicked in.
i get up, see off mk1 to school, sort out mk2, clear up the breakfast warzone, and then head to the hospice full of fear and dread as to what i’m walking into.
as it is, bh has hit a bit of a plateau, i’d sit by her bed wait for her to stir, try some degree of aimless chat, and generally hang out with my best friend.
this is not that easy as in the last few days beyond the odd mumbled word, bh has lost the power of speech.
well, i say that.
she talks to various hallucinations in her mother tongue, and then when i do something not right, she still has the capacity to bollock me in english, leading me to chuckle from time to time.
inappropriate reaction that may be, but hey.
then at midday, i’d feed her some lunch (i say lunch, for bh this involves a mere morsel or two).
which has been ok, until today, when it became very clear that despite the drug excess, she hit a whole new league of pain and discomfort.
following the lunch a new pain kicked in.
this time there was genuine fear in her eyes, something that i’ve not really seen before.
to say the whole situation was distressing for us both would be an understatement of the largest magnitude. eventually, the relevant care people came, gave her more immediate pain relief, anxiety leveling pills, and after a patience testing 10 minutes bh calmed down.
a few minutes later and she was back in the land of drug induced fug, and it was time for me to head back to the real world.
tomorrow is another day.
words cannot begin to describe the heaviness of the last couple of days.
however today hit a new level of darkness.
morphine induced chaos leading to doctors advising me earlier today that bh is heading towards the exit sign and that i should get the boys to see her one last time.
so, i head home, get the boys (a logistical issue in itself), get back to the hospice, to find bh totally sparked out.
which to be honest is a lot easier to deal with than the full on delirium that i have witnessed in the last few days.
then after 30 or so minutes, she stirs.
opens her eyes, looks towards the boys, the fog clears a little and she totally cracks up.
tears, the works.
‘why oh why did you bring them .. ‘
i had prepped the boys for heaviness, but not this.
full on trauma, and not the way i want them to remember her.
so i send the boys out of the room.
after a few more minutes, she calms.
calms a lot.
i feed her some fruit salad, and even begins to talk.
not hallucinating madness, but normal chat.
i ask if i can bring the boys back in, she smiles and is very keen to see them.
so in the end they got 20 minutes of her in a far more lucid manner than she has been for days.
i suspect that now they have changed the drug from morphine to a non-opiate based drug that she will pick up now, and be a lot more clear headed .. thereby negating the doomsday scenario that the doctors predicted earlier (they said that the hallucinations/madness were not drug related and so an indication that it was the end game kicking in).
so much going round my head its not true.
the good things :
hospice is excellent
the level of care is superb
the environment is gorgeous
the boys got to see her in a good way despite everything
the bad things :
the delirium/body shakes/violent spasms – heart breaking in the extreme
the lack of recognition when your life partner of the last 23 years looks straight through you
more days like today – not sure how much more i can take
the boys are now up to speed of the chaos, and looked totally bomb shelled
the sheer logistical chaos of everything
no idea as to just whats going to happen next, nor when
the emotional destruction on an hourly basis
ongoing life in total limbo.
cant even begin to describe the last few days.
basically, the back pain that bh has experienced has not been calmed by morphine.
she has been on a constant drip of it via a motorised syringe.
over the weekend, upon finding out that bh was still in pain, under relevant instruction the district nurses have replaced the syringe with a more potent feed.
meaning that by last night the poor girl was totally f*cked up as she was hallucinating to the max.
every minute of the night time session was damn scary.
after yet another sleepless night i awaited the hour of help, 9am, called the relevant people and said : ‘ok, that’s it, i need help .. ‘
the outcome is that she is now in a hospice with the various people trying to figure out the source of the back pain.
(something the hospital never did as they were all too busy eating chocolate and so just went ‘oh – she’s got cancer, here’s some more morphine’)
it seems that there could be a very simple reason for the back pain which involves the small issue that due to the chemical excess, bh has not cleared her bowels in weeks.
something so simple, but to date no-one has checked.
despite the fact a quick, non-intrusive x-ray would prove either way.
so there is a chance that once this is verified the poor girl is actually a lot better than previously believed.
i actually believe that there is actually a very big chance that this is the root cause to the pain as i’ve said all along that nobody has done any checks to see what could be the root cause.
to say i am fed up/emotionally drained/physically exhausted/down would be the understatement of the year.
thankfully, the hospice is very nice, the food excellent, and as far as i can tell, the care top notch, so at least one way or the other, we will hopefully get to know.
as i can easily confirm the ‘more morphine’ route was quite literally a living nightmare …..
why the f*ck anyone would take that shit for "fun" beggars belief
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.
well, the week away didn’t quite go according to plan.
we were supposed to be up there until saturday, but it became all to clear to me and the boys that bh was masking some serious pain, which by thursday was beyond bearable anymore.
so, at midnight thursday/friday i decided to call it quit, meaning i had to pack up the ireallylovemusic gangs stuff, contact the holiday park people to sign us out, and head home
.. 250 miles away.
4 hours later, we got home, unloaded the car/kids and started the process of what to do next.
a call to the out of hours palliative support line resulted in little more than a wasted 5 minutes and some well meant, but pointless words of support.
realising time was of the essence, i decided to sod all the various phone numbers, and took bh to the a&e unit that is nearby the oncology department that treated her previously on the understanding that if a&e people couldn’t figure out the situation, they would be able to call upon those that may, as the previous instance of calling out the emergency gp folks ended up with bh being in a state of a semi-coma due to a misdiagnosis that she was suffering from a blood clot on the lungs as opposed to the ruptured spleen that was discovered a week later.
needless to say that this choice of resolution resulted in 4 hours of waiting/tests, one doctor recieving a curt response to one too many oft repeated questions, several agonising attempts to extract blood from her depleted veins, and a chest x-ray.
the outcome is that she is now signed in, doped up on morphine, awaiting more tests, to establish the source of the pain.
of course, it being bank holiday means that little will now happen, but so far we do know that she has fluid on the lungs and there are additional concerns re her kidneys (the area of the pain).
on the other hand, i am beginning to hallucinate from exhaustion
oh, and today, the 6th of april, is the 1 year "anniverversary" of us being advised as to the presence of the original evil lump.
the difference in our lives between then and now is something that spins around my head a lot, but i’ll be droppng more on that some other time.
i need a few beers-n-tunes to wind down
current soundtrack : donovan, archive, the dragons.
been a few weeks since i updated this oneline diary and the reason is quite simple.
life has calmed.
after a few days the drugs cleared the pneumonia, and various muscular pains subsided.
without wanting to tempt fate, could it be that we get some quality time before the next round of chaos ?
as part of this need, at the end of this week the ireallylovemusic clan are heading up to the lake district for a few days of r-n-r.
now, last time we ventured to that glorious part of the world we trekked up down hills, walked round lakes (little ones mind), and generally disconnected from the outside world while taking in the stunning surroundings.
this time though, given the physical state of bh, all of that will be beyond her capabilities, so instead the week will probably involve a lot of tv, a few pub lunches and a glass of wine or two.
despite the never ending intense emotions that are always present, i can’t wait.
in other news, last week ireallylovemusic was approached by the guardian to contribute towards their ongoing music blogjam section, and the results went up yesterday : here
of course the result of this will probably be a glut of emails from some wide eyed and innocent hopefuls, but still despite that (!), its a very nice treat.
as if the blood clots weren’t enough.
as if the ruptured spleen wasn’t enough.
as if the f*ckin’ return of the evil lump wasn’t enough.
as if the swollen leg and constant pain when walking wasn’t enough.
turns out that the nagging muscular pain bh has been experiencing for the last week on her right hand side is due to a new dose of pneumonia.
and so the never ending cycle of pain/help line/doctors/tests/prescription/chemists/drugs persists.
as the dust has settled i should update this online corner of joy with the latest situation.
after a few quiet days last week, bh and myself were due to see the oncologist on friday.
due to the phone call earlier when the oncologist summoned bh to hospital for the blood transfusion i already knew what was going to be said at the meeting as i had already asked the question regarding the results of the ct scan.
however, there was no way i could tell bh the full story, so perhaps unwisely i had kept the full details to myself, meaning for 10 days i was carrying around more knowledge as to the situation than i think was probably good for me.
basically, the ct scan confirmed that the growths in her lymph nodes had become worse, and more widespread, thereby confirming the cancer is aggressive and on the attack.
not only that but there are concerns as to just how and why her spleen ruptured given that at the time it happened bh was not doing anything physically exerting, and of course there are concerns as to the ongoing problems with the blood clots meaning that as she is no longer on the blood thinning injections makes the concerns all that more worrying.
[if you remember, the reason for her no longer taking the daily injections is because they believe that when she ruptured her spleen the blood didn't clot as it would have normally making the outcome more serious, so taking her off the medication is supposedly a case of lesser of two evils .. ]
when all of this was explained to bh, the impact was pretty heavy to say the least. as the oncologist said :
‘sorry, but there really is no upside to any of this .. ‘
and there it was. the full story hanging in the air.
for several minutes (trust me, it felt a lot lot longer) neither of us said anything. nothing.
on one hand i felt a void of emotion, whereas on the other, i can’t deny a sense of relief came over me, as i no longer had to deal with the intensity on my own.
since the meeting, life has been quieter and relatively calm, albeit with moments of intense despair.
however, i do wonder if the dream i had the other night was part of the beginning of my acceptance of the situation.
last nights dream :
i’m in a room with bh.
i have a copy of a magazine in which there is a controvesial review by john doran of a marylin manson album that i want to show bh as the review is being discussed on the radio.
i’m spreading the magazine out on the floor (its an arty magazine with an unusual design layout).
i find the relevant page which as well as the bullet point styled review (as opposed to the usual john doran style prose) has a all too standard ghoulish picture of marylin and the cause for the controversy – the negative score out of ten, something thats never happened before.
as i lean down to rearrange the pages on the floor, bh spots my socks.
she says : ‘the orange colour of those doesn’t match with what you’re wearing …’
me : ‘so what – doesn’t matter’
bh : ‘yes it does .. ‘
at which point bh then starts giving me grief about the usual stuff we have had heated debates many times over the 20 plus years of our time together before the evil lump dulled her driving passion, killed her righteous fury, and reduced her to a state of skin and bone.
after a few minutes of her ranting and raving i smile.
bh stops her rant and looks at me with a confused expression.
i lean over her, hug her and say : ‘not today, not today. i’m not ready .. ‘
at which point i wake up with tears streaming down my face …
i think it’s safe to say my defence systems are cracking …