It all sort of crept up on padded paws oozing silently into the room, waiting patiently for me to look up and see the writing being flung at the wall.
It's a nasty shock when you realize your doctor does not expect you to win, when they start talking about palliative treatments and pain management because no matter how grounded or pragmatic, we have been brought up to hear doctors as an authority and when they do their Voice of Doom act there is a moment of instinctive belief which splinters the bulwark of your own resolution and you waver.
Then, if you are lucky, you spend some time picking up the pieces and weaving them back together with research and determination. I now own a juicer. I read several somewheres that cancer dislikes an alkaline environment so I am transitioning to alkaline foods, I am going to give those cells the most hostile environment I can create for them. It's not like they are paying rent or anything.
With the traces of my last chemo cycle starting to leave my system I am cleaning my internal house and putting shiny new bricks in place to support my immune system. I don't want to live forever but I refuse to hand over this mind and body that has been lent to me, that I have lived in, loved in, laughed and cried in, these feet that have danced me in and out of trouble, to some rogue cells for their suicidal party that will take me with them. Not happening.
So I am cultivating a taste for cabbage and broccoli juices (pretty awful) and balancing with apple and carrot juices ( palatable) and turning out enough pulp to start a compost heap and I will keep peeing on those little strips until I consistently turn them blue!
The hardest thing for me is accepting that it is okay to have moments of weakness, that it doesn't matter if you falter or waver as long as you come out swinging and keep on moving forward. Besides, I want to be able to give the finger to that wimpy little doctor who has given up on me. And maybe a raspberry too.
I have always been able to do more than one thing at the same time, now suddenly that too has changed and I find I have one focus at a time, and some of those for a very short time at that. Yesterday I was put on hold on a phone call and I just sat there listening to the music on hold and singing along instead of turning back to the computer and the commentary I was working on.
I nearly hung up when a song I did not particularly like came on because my focus had shifted from phone call to music. This is going to be interesting if it is more than a passing phase, I am going to end up living in an eternal moment and will be endlessly happy but a total ditz to anyone who meets me or has to deal with me.
I have been thinking about pain a lot the last couple of days. Feeling it too, from the bright clean pain of the tendinitis from where I fell, to the sharp ice picks through my head that always manage to wrench an involuntary gasp or moan from me, to the dark heavy pains crawling through my gut, occasionally pausing as if to make sure I am paying attention. I am. Actually I am frequently curled up like a craven in my bed sobbing "I'll talk, I'll talk just tell me what to say!" Nerve endings play intense music and I have not yet found a way to embrace it.
I did fulfill a dream this morning. I have always admired the commentaries they used to have on the BBC by Richard Dimbleby and his ilk and today MY first commentary was aired on BBS at 7:30 a.m. so it will catch the weather audience. It will be a weekly event, just my thoughts or views on whatever struck me as portentous or socially significant. Nothing overtly political and always short, sweet with a touch of what I consider wry humour.
Oh this is great! I am using Firefox instead of IE today and it is spell correcting!~ Gotta love technology!
it's been a week since i wrote. Couple of reasons - I retreated to bed for three daysto cherish the exquisite pain that suddenly tunneled through my entire digestive tract. It is hard to credit there is no sign of external or internal bleeding. That much pain should bring blood, how could it be unproductive? Just pain for pain's sake? A new art form? I took no joy, no pleasure in its bite.
other reason, no news. A half assed report saying the brain scan was "normal" - I asked for details as i had seen the scan and asked which type of normal we were going for. Clearly NOT for a return to pristine, uninvaded brain tissue so is this the normal of an irradiated brain and if so what does that mean to me? Is it 'normal' success or 'normal' falure? Should I sign up for classes or hock my dancing shoes?
I find myself craving attention - I long for strong hands rubbing my limbs with fragrant oil and feeding me pomegranite seeds. Or grapes. Reading to my restless mind with resonance and a smile, holding me underwater then fanning my dripping flesh so I can be truly cool, bringing me glasses sparkling with ice, filled with rich foaming juices to assuage all my thirst, all my need.
Instead I drink cups of tea hot enough to pull waterfalls from my pores, so full of chemicals my own sweat makes me itch and smell like mushrooms with a spike of formic acid in the blend. My new normal, unfinished undefined, so incomplete I'm having trouble finding me at all.
I saw my brain, unfortunately it did not come with a radiographer's report (nor an owner's manual) so I am hoping Dr.I or Dr.S will be available to do some translation. To the untutored eye it looks scary as all get out and added top the inadvertently acquired information - inadvertent because it was on a website I was researching for headache info - that whole brain radiotherapy has a median survival rate of three to six months well it has been an intense couple of days. it never occurred to ask if I would survive the treatment!
I will, of course, because that's what I do, go through things and survive them, turn them into words sometimes that other people think are pretty, heck somtimes I think they are pretty! It is always so much harder in the world of 'do not know' but now I have six months of learning behind me. My hair is coming back on schedule - three months post radiation my sis took a pic of the fuzz halo - long enough to blow in the wind i'll have you know 1/4 inch at least - we'll try for a better shot later and I will upload it.
And I shall corner a doctor this morning or stop by my neuro guy after chemo with a print out from that site and find out more but not wandering around on my own with fear and sketchy knowledge as companions that will just drive me back under the blankets where I know the monsters can't get me, but nothing good happens there either!
My sis says she is fit to drive me and after much soul searching I am going to trust she is wise enough not to do herself harm - we have tied the trunk down securely so the car is usable so I need to go it's almost time to leave for chemo. Just two more days! Then I get to do something new.
this last week literally gave me sharp stabbing pains in my head so I hunkered down to medtate and keep my stress levels down.
My sister's whiplash is improving but my car is still out of commission and I am trying to let go all thoughts of the radiographer's report on my cat scan. They would not let me look and the glimpse i managed to catch meant nothing to my neurologically uneducated eyes. So i have to wait until Tuesday. The first day of my last chemo cycle. It is true what they say, this too shall pass.
Yesterday i finished mock ups of four print ads for the radio station and i think two of them are actually good while the other two are okay, just a bit pedestrian but really good artwork could make them - unfortunately my own sketching/painting is intermittent, occasionally inspired generally just run of the mill.
It has been four months since they nuked my brain and i am dizzy and feeling oddly weak again, the scary thing about radiation is it works slowly and makes edits in your system without warning, sits for a while and then starts up again, a bit like a flower blooming.
I am doing my best, went to a fishfry last night and going to the beach in about an hour. I went last week, walked into the water and fell flat on my face. The sea, the only place to fall, even kinder than love!
apart from severe whiplash, but I am very grateful that her spine was not battered too much as she had a previous injury which could have been exacerbated.
I am now totally dependent on the kindness of my friends as both my driver and car are out of commission - this week is not too difficult, blood test and cat scan tomorrow and i have the rest of the week to organise for my last chemo cycle next week.
Tomorrow is a bit frightening because they will scan the brain and we will find out how much the radiation achieved. My vote is for total destruction of tumours with minimal tissue damage and, as the lady says on Are You Being Served, 'I am unanimous in that!' And if not? Well, we will all get to find out how well I practise my philosophies of life. Or Life for that matter.
I am finding it harder to have fun in this playground because the management keeps adding features I would prefer not to have - this week my video deck died followed by my DVD player and yesterday the DVD drive on my cmputer decided it is not going to eject the disc.
I have tried everything short of removing the casing of the CPU and disassembling the drive. I did actually try but it is not a job for one hand only, the light comes on but the transport is jammed. I need a repairman who makes house calls - too bad all my IT friends are in NY!
So my fun quotient is fairly low tday, in fact I bawled my head off for a while when my sis said she managed to open the trunk on the car but now it would not close. You can still drive a car with the trunk stuck closed!
It is just life but today it is a struggle to get things to flow, but at least my sister was not terribly injured, just soft tissue stress and pain that is controllable with meds.
I think a vacation would be nice!
i was just getting ready to go to the beach (finally!) with my neighbours when my sister called.
She hadf been driving my mother to pick up HER car when someone rearended them. Police had been called and an ambulance as my sis has a bad back and her neck was hurting. I wasn;'t in a position to do much, but I called my friend H and he was ten minutes away so he said he would pass by the scene and since then my sis and mother are in A&E waiting for X rays.
I called M to cancel going to the beach and then decided to go anyway, I might as well get a work out while I worried and this way i did not have to be alone.
Back home now, waiting for call backs and about to make a cup of tea and trying to come up with a plan to take care of my sis if that is necessary and to take the burden of caring for me off her shoulders.
I hope she has not been seriously hurt. Please let her not be seriously hurt.
I have tried to take it easy today, resting the arm and hand which are actually inflicting a great deal of pain
onme anytime I ask them to do anything. The left leg just jitters a bit and threatens pins and needles every now and then.
My state of mind is odd. My sister, who has been my anchor through all this will leave me once chemo is finished and I will be truly alone up 15 steps, unable to drive or even take my garbage out. I will be bereft and isolated in way I have not been thus far.
Certainly the Universe will supply me with help, all that I need and more, but I will still feel more vulnerable and be a tad more stressed, something I work hard to avoid, and I am worried that without the need to be the 'big' sister I may crumble under the regimen of trying to rehab my left side.
Of course, now that I have said it out loud I don't have to do it, this blog has been a tremendous help with that, acknowledging my fears helps me through them so I do not live them but I do not wnt her to go. and that dependency itself scares me - I had not realised just how comfortable i am becoming being cared for.
Well I have till the end of November to get over it and reorganize. Will there ever be a time when I am not reinventing myself in some way?
I guess on the whole, I hope not. Life would become rather mundane and just life with a small 'L'. I am not sure I would like life with a small 'L".
Over the last six months my right hand has picked up immense stretches of slack and subbed for my left but try;
putting in a window screen
extricating a stuck video tape
lifting a roast out of the oven
fastening small buttons
fastening hook and eyes
fastening delicate sandal buckles
using a paint palette
washing both sides of your face at the same time
use a knife and fork to eat english style
with just one hand. These are the things I have crashed and burned on in the last twelve hours. It is by no means a complete list and some things i just keep hoping 'well, i'll get it this time' and give it the old school try despite the last abysmal failure. Things change all the time and I am quite nifty with a screwdriver again.
The finger paints i bought to help me make circles are a horrible consistency and the colours are dull, which hasn't stopped me from exhausting my right arm - to the point I cannot move it much- making pages of dull coloured circles.
Anyway, there are enticing scents emanating from the kitchen and I think my left hand under the cutting board with my right hand holding and I will be able to transport the casserole dish to the counter if not the table. All it takes sometimes is a different perspective. Sometimes it takes an extra pair of hands.
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