Monthly Archives: February 2012

29-2-12

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.

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28-2-12

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 …

20-2-12

you know so much has happened in the last week my head is all mushed up just trying to deal with the physical and emotional fallout.

following an extra dose of oramorph (morphine in medicine form) i somehow to get bh to the ct scan for the time required, after which it was a case of head home and back to state of semi coma. then a little over 24 hours later at 7pm in the evening the phone rang. it was the oncologist.

doctor : ‘hi mark. can you please bring bh into hospital’

m.e : ‘of course i can, when ?’

doctor : ‘now … ‘

turns out the blood clot diagnosis was not exactly correct.
the reason for the extreme loss of energy and breathlessness was down to that pain bh experienced in the middle of the night.
she had a ruptured spleen – and so had suffered a lot of loss of blood and was in need of an immediate blood transfusion.
as is always the case kid kaos logistics need to be dealt with first, it being 7pm and with mk1 en route home from berlin, i needed to organise somewhere for mk2 to stay.
thankfully, some friends a few doors up from ireallylovemusic hq were in and could help.
so overnight stuff (power rangers duvet, and pjs) and hugs sorted, bh was then rushed to hospital.
well i say rushed.
tis the road closure season round these parts (you know, that time of the year that local councils realise they have some budget to use up prior to the new financial year so go mad resurfacing suspension damaging war torn roads), meaning that we had the pleasure of a 20 mile detour due to the main roundabout that goes into cheltenham closed off.
upon arriving at the relevant ward, bh was placed into a side room with a one channel tv and there we stayed for a few hours while doctors asked questions, tried to get some of the blood she had left out for analysis (every single time she goes anywhere near a nurse/doctor, they seem to have a need to draw out some of her blood, which is not that easy as her veins are so damaged making the whole process extremely painful for her).
the results confirmed that she was indeed low on hemoglobin, and so would be admitted there and then for an immediate blood transfusion.
as it was approaching the midnight hour, i had to dash over to another lovely cotswold market town in order to pick up a post-berlin teenkid, meaning i had no option but to crack on.
mk1 got home safe and sound, i passed out for a few hours sleep, then got mk2 home from the neighbours.
bh stayed in hospital a couple of days, got some colour (ie. blood) back into her system, and is now on a whole range of different drugs.

the big worry though is that they have stopped her taking the blood clot injections so that the ruptured spleen can heal up, but needless to say this raises concerns re more blood clots, as she is already experiencing a lot of pain in her right leg making it impossible for her to take part in normal active life.

in fact, there are so many unanswered questions that my head is spinning. i feel like things are happening, and nobody is telling us the full story ..

then again, do i want to know the full story, or should we just live in the here and now and make the most of things as they are …..

14-2-12

happy valentines day ?
hmmm.
for reasons i’ll come onto today is a big big day, and my nerves are rattling.
time for an update :
the period of ‘normal’ life i alluded to previously lasted a total of two weeks.
two glorious weeks during which bh started discussing going back to work with the relevant people, i went into the office like a regular office worker bloke that i am, and the kids caused their usual kid related chaos.
we even started making plans for the rest of the year.
a quick few days in brighton during half term, and possibly even a festival or two.
then just as we were settling into a groove the proverbial hit the fan, and it all started on my birthday, the first of feburary.
i had gone into the office, provided the all important sugar rush treats for the baying masses, and gone home with the hope for a pleasant evening with bh.
however, upon entering the house, it was clear all was not well.
the swelling in bh’s right leg that she had shown me a few days earlier had become a lot lot worse, understandably bh was nervous to have the situation looked at.
the following morning i was due to see my doctor about my ongoing medication needs, so i took the opportunity to mention the swollen leg.
response ; ‘ that needs to be looked at immediately’
an appointment was made for later in the morning – meaning i was able to get bh there whether or not she wanted to go.
needless to say with 3 minutes of the doctor seeing the leg (now a lovely shade of purple), bh was booked into a&e.
this meant 6 hours of various tests, blood being withdrawn, analysed, etc.
the outcome was nothing definitive, so bh was booked in for a scan on her leg the following day.
this revealed that a blood clot that had been picked up by a ct scan back in december was on the move and had located itself in the groin area thereby cutting off blood supply to the leg, hence the swelling.
when we enquired as to what could be done, the advise was simple :
‘seeing as you are already on the necessary medication for blood clots, you’ll just have to grin and bear it’
thanks for that.
that was friday the fifth of feburary.
now, you’ll forgive me if i cant recall the exact sequence of events for the next few days, but lets just say the following week was a rush of emergency gp visits in the middle of the night, the local gp coming on a regular basis, as well as the palliative care, and district nurse, as bh became bedridden.
basically, the swollen leg was a mere warm up to the real deal which kicked off after the weekend.
within a few days after the a&e trip bh was unable to get up the stairs without turning blue – literally blue – and shaking violently.
it was scary shit, and something was not right.
subsequently, i ended up at the local chemists on a daily basis as the various doctors prescribed a cocktail of life saving drugs which i have to administer on a strict time scale basis.
following an intense 24 hours, the current theory is that the blood clot has broken down and some of it has gone into her lung, hence the lack of oxygen in her system whenever she tries to day anything. again, as she is on the medication, there is little more that can be done, other than pain relief (morphine !), and waiting it out.
unfortunately, one of the other big factors in all this is that bh is not eating. anything.
she was a mere 42 kg post op and looked painfully thin, meaning every day without food is a concern, but as she has spent the last 3 days in a state of semi-coma, i am unable to do anything but urge her to eat something.
so, why is today of all days so important ?
well, next week we were due to go for a ct scan to do a before and after analysis of the lumps that they spotted back in december to try and ascertain whats going on, but due to the current chaos, the appointment has been moved today.
so, with mk1 on a school trip to berlin, and mk2 farmed off to one of his friends, i have to somehow get bh out of bed, into a car, and to the ct scan unit.
after which there is a chance our lives will change forever….