There are moments, sometimes lasting for hours, when I do not think at all.
I have discovered face book.
Face book is populated with many of my cousins, filled with my genes and several friends from other sources. It also has the neverending movie quiz.
I am in competition with myself to beat my longest streak of thirty nine correct answers in a row. I was quite frustrated that I stuck at 39 and not at forty but decided I don't mind being younger for a moment. I find the thought that in twenty four hoursI have answered more than 700 questions overall a little unnerving. As a mindless entertainment to while away an hour or two it is sheer perfection.
I needed to pull back a bit. The time spent with, spent waiting, for doctors is all about disease. The waiting rooms are full of people suffering, their pain, their fear and mine. It grows, cold manacles around your ankles so you do not even change your seat, just frozen in one place waiting. To hear your name. To be released. To be judged.
You sit, you wonder what you did to make this happen. What strange law of attraction and why. In the deepest recesses of memory that little 'roll guy' is kicking his little sneakers and waving his little white gloves, because of a poem I wrote thirty years ago. I had exquisitely painful migraines every few weeks at the time.
That might, in some way, answer the 'what', but not the 'why'! I have a theory as to why. And again, it matters only that it works for me.
Things that work for me are things that make me smile, even if it is just the slightest twitch of barely convinced lips. I'll keep working with the theory until it has a context and a shape to reflect the light so i can laugh out loud at my confection.
My poems have all wilted on the vine for now, composting down, leaving dormant seeds to grow new strains of trumpets to herald future dawns and sunsets with a fanfare taken from the very guts of living in the moment. Or something.
I needed to pull back, the trees were all around me and I needed space to breathe. Today, I go to work, a gentle irony, to record and produce a program on health supplements. My job to ensure the claims are not extravagant, untrue, to keep the hype under control. And also make good radio, not just an infomercial that fills half an hour. I will be editing like crazy to get it on air Thursday.
Tomorrow I go to the hospital again. This time a CAT scan and a core biopsy of the mass in my lung. I sincerely hope it is less painful than the lumbar puncture, probably, because the needle is quite fine. They say.
My neurologist told me last week that they did eventually find some atypical cells in the fluid they took from my spine. Nothing they could type unfortunately, so whoop-di-do. It will be a cold day in Barbados before I sign a consent form for another of those. I now have four doctors on 'my team'.
I am grateful somewhere but I keep thinking,I really do not like team sports.
Let a few doctors into your life and they all seem to come equipped with needles!
On wednesday I performed a great act of faith. All my attempts to confirm a time for the biopsy on my lung were fruitless, and I did not receive the promised phone call. So I simply turned up at the hospital at eight o'clock and waited. After several dead ends i finally got to the cardiac (!) unit and after about twenty minutes my thoracic surgeon turned up for cardiac clinic, did a double take when he saw me and after seeing an urgent patient took me over to the CAT scan unit and left me to be organised.
By the time he was through with his clinic, I had had my preliminary scan and had a little 'crosshair' target drawn on my chest. It was incredibly windy, almost cold on the cat scan machine but the room was large, bright and airy and I had a book with me. They backed me out of the machine enough so i could read and warned me not to move my torso as it would ruin the target so carefully set up.
My surgeon arrived gave me a painfull injection that would stop me from suffering too much and said, 'That's the easy part done.' Then IMMEDIATELY inserted a long skinny needle into my lung. I mean, count to five at least! It was not numb yet! So I felt it when he grazed a rib on the way in.
This time however, I was prepared for pain and it really was not too bad. Lying still, breathing very gently because somehow the knowledge that shiny steel was running me through was a little intimidating, was a tad tedious.
I could hear the sound of conversation, not the content; although it felt as if my ears stretched to rival Dumbo's. I lay still and breathed a little harder, just enough to prove that yes, I could still feel, and yes I definitely could tell I was impaled.
And then sensation stopped just in time for my doc's return to create enough suction with the syringe to pull out blood and tissue. Slides were made, I was told 'press down, on a piece of cotton gauze sent off to X-ray to ensure my punctured lung would still inflate, deflate as normal.
Warned to return immediately to Emergency if I felt sharp pains breathing or got breathless and to tell them I'd had a lung biopsy so they could stop me from dying (verbatim quote), I was free to go. Three and a half hours after I arrived.
My lung did not collapse, I have slept a lot since them and this morning managed to get deodorant spread over my right armpit on the third try although my left leg tried to slide out from under me as I focused my attention on my grip of the recalcitrant left hand.
I ironed my linen pants before I put them on. Fresh, crisp and clean has become important, the hallmarks of control, of normalcy in my world gone slightly mad.
I usually start my day with the 'salute to the sun'. Well, once in a while, because I really feel more awake after going through it a couple of times.
Downward facing dog was my undoing yesterday. The position requires all fours and I am now reduced to two reliables, both on the same side!
I have been making daily adjustments to acommodate the changes in what my left side will and won't do. There is no paralysis, although sensation is erratic and my ability to hold on to things and pick things up spontaneously is AWOL at the moment.
There is no telling what happens to the impulses between my brain and left side at the moment. Frequently the opposite of what I intend. I nearly yanked my arm out of the socket coming up the stairs when my left hand took a grip on the bannister that could have uprooted an oak tree. The same hand that dropped a coffee cup without even noticing it had picked it up.
Sleeping is odd. If I lie on my right side, my left arm and leg fall off the shelf that is my body, perhaps forward, perhaps back so I can actually roll to my left, onto my back and trap my left arm under me, quite painlessly, all unnoticed till my hand gets really cold because the circulation is blocked. so far i do not get pins and needles as the blood flows back. When full sensation returns it will probably hurt like hell.
If I lie on my left side i feel as though I am floating, suspended on something cushiony that does not feel stable and secure. On my back I have to wait out the spasms that firing, misfiring synapses put through my left side, including groans and yelps and snuffles that creep up and out the left side of my throat and mouth unbidden, uninvited pictures of possible futures where i twitch and moan and burble shapeless sounds that no one can find meaning in...it is a fear i look at just a little, in case I reach the point I have to look it in the face.
I am waiting, of course, for biopsy results. I have let them poke and probe and take their samples. I already know the answers in broad strokes, it is the details that hold the future. What poisons will I need to take, for how long. Radiation and chemo together or separate, one after the other or spaced out.
How long before the tide of symptoms, miscommunications from my brainstem, can be halted, reversed and how far back can I go ? And can I really live throughout my days with the taste of my mortality forever in my mouth? Will i be able to climb the 29 steps up to my apartment or will I need to find another home?
I do not look at all the questions. I don't want to give them shape before I must. I watch the certainty of sunrise in its beauty even if my attempts at salute are more like pratfalls now. The sun still rises.
Patience is one of those things you have to teach yourself. there are no lessons in it. No special seminars on waiting. Oh we are told to be patient frequently. As kids, as teenagers, as young adults. But no one ever takes the next step and tells you how it is done.
I am actually pretty good at just sitting doing nothing. I do not fidget, shift in my seat,scratch my head, nose anything; sometimes I don't blink because it freaks people out if they are sitting opposite me and entertains me. Or I read. Anything from ads on buses and subway cars to tattoos.
Cereal boxes. Your newspaper over your shoulder. I never read books over peoples' shoulders as i read faster than most and it would be rude to turn your page before you are finished, newspapers I can column hop.
i spend a lot of time waiting at the moment. And although i actually have two things productive I could do i find it easier to be patient playing the neverending movie quiz on facebook. I am up to 20,000 points. And I have answered more questions wrong than right I think so that is a lot of questions.
it keeps me moving forward in my head instead of stopping to think thoughts that have no concrete posts to hitch to, angry conversations with my doctors that I will never have, For one thing they won't ever say the lines I give them and for another I cannot think of one advantage to pissing off the doctors who I need to LIKE me! It is going to be bad enough when I start agitating for nutritional and holistic treatments to supplement their regimens.
So I only left two messages today (2 differents docs) asking plaintively if there is any word on the biopsy results yet. Well actually I cannot do plaintive in real life, only in my head so I went with calm and polite instead.
And I am waiting. Perhaps this IS patient. Perhaps I have learned!
I am lucky in my job. I love what I do, and after a year I have a real friend in my boss. I have actually learned from her that I do not 'have to do it all' . That perfection, while an admirable goal, is not essential in everything I do. That sometimes, tomorrow - or even the next day - is soon enough.
My often twisted and currently macabre sense of humour/of the ridiculous is not really her style, but the learning process has been a two way street apparently.
She just got back from a trade show and when i saw her yesterday she gave me a little 'quark' world with bendy arms and legs for a desk toy, then hesitated a moment and said 'I got you a brain, I wasn't sure...but I got you a brain."
She disappeared into her office and brought me back a bright blue 'brain' stress ball from a company called Livewire. I love it. and have spent a lot of time trying to crush it with my left hand.
i can do absolutely nothing about the mixed messages flashing back and forth from my cerebellum to muscles BUT I am hoping that the same 'muscle memory' that cut my training time after a lay off as opposed to the inch by inch achievement when doing something entirely new will apply to all the muscles hanging around waiting for coherent instruction. So I am using the muscles.
I lack coordination and pretty much all of my finer motor skills on the left side are currently trashed but I can walk, make a fist, do a bicep curl (although raising my arm above shoulder level with anything in my hand pretty much guarantees a whack in the head) and can actually still almost keep my balance walking heel to toe in a straight line. Well, I do stagger, and I have to concentrate so hard my tongue sticks out like a little kid, but I can make it happen.
My theory - and I don't much care if I am right or wrong, it works for me - my theory is that there is likely to be more loss before I get to recovery and I need to remember what my parts are supposed to do! So if i work through range of motion exercises and keep trying to touch my nose with my forefinger and a' spider doing push ups on a mirror' with my hands, when finally reasonably accurate communication is restored my physical being will be accustomed to the motions under duress and will be so delighted to just be able to do it that the road back, while not simple, will be familiar.
Yesterday, in the shower, I rested the soap on my left palm, looked away for just two seconds and when I looked back it was gone. here had been no 'boink' as it hit the tub, no sensation of slipping or release. It was simply gone.
Although I can feel hot, cold and sometimes pressure there is no certainty. And it is very odd to look at a hand, tentatively holding a piece of paper when sensation does not support the information coming from your eyes.
I am a little nervous about embracing these strange distortions and departures from the usual level of reality. A part of me rejoices in the fact that certainty has fled my world. I am not convinced my mind has 'muscle memory' I am not at all convinced I will want to relinquish the sensation of falling through my own flesh, of living on two planes, of being without an 'I' when it is time to come back to here and anchored in the concrete.
Some of this is quite seductive. A part of me is having fun.
Having a tough morning. I am losing elements of me that have been part of me forever.
I have always danced. Always shown the echoes of my ballet training in the way I stand and move,.Tioday I reel and stagger, out of control, ungainly, in danger of hurting others or myself. And it breals my heart.
my words are trapped in unmoving thoughts, frozen waiting for the next right thing to show itself. And I am living inside a stranger who twitches and jitters,walks into walls that were not there a minute before.
Intellectually I know it is just that the pressures in the brain stem have shifted, gotten more or different (let's call a spade a spade, worse) so the art of communication is a memory trace in muscles that are too strong to be uncontrolled.
Cast intellect aside and my system is screaming at me, something is wrong,. something is really really bad, I cannot breathe I cannot talk I cannot move I cannot think and none of it is true but all of it is so so real.
I do not want to do this any more, this losing pieces of myself so fast I cannot keep up.
I used to sit in sesshin to let go of self, of ego, of duality and frequently felt renewed, revitalised after. But it was never like this. All the signposts, the landmarks of my psyche, all the things that make me myself are
disappearing, leaving me naked, paralysed and conscious.
The good thing is if I just let it happen, just sit and feel the storm, the fear, the panic, it passes. Perhaps we are just pushed to our limits and if we do not fight, the tide goes out to let us rest for a while. I am still not happy, but I am calmer. I have learned this will not last either. Life may be rich and good but sometimes it just plain sucks.
I cannot believe I let such a golden opportunity slip by!
I had four interns and their 'mentor' doctor present at my bronchoscopy in addition to my own doctor. And I sat demurely (no really) and quietly while the mentor did his best to elicit tentative diagnoses and opinions from his 'chicks'. I did flirt a bit with one of the chicks who made eye contact, he turned out to be my second cousin so we chattered away while the visiting intern from Germany hazarded a guess that a bronchoscopy meant they were looking for cancer.
I was at my entertaining best as my doc sprayrd lidocaine down my throat, then in my nose. I asked if he was trying to stop me talking- for a shy retiring type I can get very obstreperous at times- and when he gave me a second spray down the nose saying let's try this again, I went silent for about three minutes and then growled (about all I could manage with near paralysed vocal chords) "I can still talk you know!"
and managed to get a laugh out of every one.
They put me to sleep after that, although I did hang on long enough to excuse myself and thank everyone for coming. Apparently pethidine makes me gregarious.
It was not until I got home that it occurred to me just how much fun I could have had. I think the atropine dried my imagination along with my mouth. it was clearly a chance for me to indulge the House MD
who lives in all of us and say:
The patient presents with numbness, parasthesias on the left side of the body. Is clear for MS, diabetes, thyroid whatever it was,no stroke, no coughing, no chest pain, no respiratory distress, the lung function test is well within normal parameters, heart trace is normal, kidneys and liver are functioning optimally according to the blood tests and scans. So why is she having a bronchoscopy? I just love the diagnostic brainstorming sessions in House!
My sister had come back to pick me up so she was there when I asked my doc what he saw. She was as speechless as I when he said nothing much, there is a great deal of distortion from the surgery you had 20 years ago and so we took some sweepings(!) and washings (no wonder I am wheezing today!) and hopefully we got enough for the lab to get good results.
I feel like spitting. Well, at least the LEFT lung is clear and healthy. And if they think I am about to smile sweetly and say "go ahead, open me up and take a look" They are so wrong.
I have a follow up with my neurologist tomorrow as he should have had input from the surgeon and yesterday by then. I am going to take my sister in with me - just in case I have been worn down enough to cave under the pseudo-authority doctors assume so well, and I am going to ask that something be done immediately to address the freaking tumours in my brain.
My sister needs to leave for a couple of weeks - she does have a life; I need to be able to tell my boss someting definitive, right now I am working sporadically but the company (and I) need to have a plan so areas I would normally deal with are covered.
I have to look at how I will manage day to day. I cannot drive. All sorts of things are becoming unexpected challenges. The other day, Iwas concentrating very hard on keeping balanced on both feet and the left foot floated uo off the ground as though gravity took a holiday! The fingers of my left hand will cling to a handle so tightly they hurt, while the thumb just dangles sometimesor curls over the top of the fingers as if to make a fist.
Strange days! It's rather like those 'interesting times' of the Chinese curse. Then there is my mother. Who is no doubt doing the best that she can, but I find her very trying at the moment. And I really did not find the comment "been there, done that" when I tried to talk about my concerns particularly helpful or supportive. My sister and I need to find a gentle way to tell her That she'll be on her own for a couple of weeks.
Dawn caught me by surprise this morning. I sleep and wake in different patterns now and woke to see the sky all light, sunrise has slipped back before six a.m. again and I can feel the pull of my Friday nights live, midnight til morning, company and conversation overnight show.
I have all the notes for the first three programs done, plenty of content first quarter under new government. The charter that came from Ghana left travellers and never came back to take them home. New movies to review, new music to play and some to resurrect and make the stars spin in their litle constellations.
I miss my listeners. The man who called the station while I was in the kitchen on a three a.m. coffee run so i heard the phone and answered.
When I said, good morning, bbs he said"How do you know anybody is listening to you?" I said, I don't know, I have a lot of faith. And he said:"Well I called to tell you I am listening and I hear you." then he hung up. Until the light touch that made the airwaves mine returns, my words stay here.
In forty five minutes I will go downstairs, hungry and thirsty, so my sister can drive me to the hospital again. There the first order of the day is a heart trace to check the pump is working well, followed by a lung function test to see how much the bellows of my furnace have been compromised and then invading the invader is on the cards.
I will miss most of the action unless the new irregularities from my sleep centre can overcome the tide of sleepiness they plan to send my way; a silver streak of moonlight made hard ,shining into corridors that open to all the functions of my world. And to oblivion.
Yes I am both squeamish and phobic about needles and I will always choose a metaphor instead of steel. Biopsy today. The lung, because it is so much more accessible than the brain. Home later. Lighter by a few cells that contain the universe and will illustrate the paths ahead of me, placing signposts with real guidance if they tell a tale that medicine can read.
Next thing to do? A wave good morning to my friends
and now I go to shower, I have found a washcloth gathered around the soap cam give my left hand purchase and help me win the game of do not drop the soap.
I have not been able to write for the past couple of days. The occasional forum post and a poem that squeezed itself out through the cracks in the wall as I started to shut down.
Inside my head it is how I picture the tundra, Vast expanse of cold, unfeeling land, caressed by eerie winds that sing songs from pre-history, while grasses rub against each other, whispering hold on, hold on.
Aunty Maggie died. Not really an aunt, just one of those grown ups around from childhood so you never get to be on a first name basis with them, but another lynch pin from my life, now no longer there. And with her, goes my aunt Nancy, true aunt and strong, now devastated by the loss of her childhood friend.
Telling my sister not to let me get depressed because she could not take losing a niece as well.
Why is everyone around me so friggin' sure I am going to die? well actually I am, we all are; BUT not right now! Not if I can help it! I am certainly not going to top myself.
I sit, I meditate, open my mind to guidance rather than my knee jerk 'no', I have researched how best I can use alternative therapies to support my psyche and my system post chemo. post radiation. I know, oh gods, how well I know, how hard this is going to be at times.
A preference for taking a positive attitude only works if you have thoroughly examined the alternatives. Choice can only be made between options. Anything else is denial.
One day you wake up fine(relatively speaking), the next day they say you have interesting shapes where no shapes should be.
The only difference is that now I know. Nothing I say or wish or pray for will change that simple fact that defines my new reality. I have spent the time since March 5th doing my best to embrace this.
Preparing to relinquish control, to let the doctors do what they say they must - but making them explain to me so I understand why this MUST be and not some other way.
Ready to take back control and responsibility as soon as it is time. Gym membership on hold, osteopath interviewed, exercise prgrams I can do now, even if somewhat awkwardly to maintain as much motor control and muscle tone as the garbled messages from bajancentral will permit.
How dare they choose the dark for me? How can I turn to people filled with fear for the support I need? How can I give them strength right now? How can I cry on shoulders that melt as though my tears are acid?
I know this affects everyone, not just me. But right now, for me, it has to be all about me. The worst thing in the world for me would be to let those walls close down, I just know that in my bones. I don't know yet how to say this to those I need to understand this. But if I practise here first I can take thedges off my anger. I don't want to be unkind.
It is coming up to six in the morning now, my appointment - along with everyone else who will be at this particular clinic this morning - is for 9:00 a.m. I will get there just after eight and I will not be the first to arrive.
The one thing I never got used to in New York was walking in to a room full of people, saying 'good morning, afternoon, or evening' and having no one respond. Here if you catch someone's eye on the street it is appropriate to offer a greeting, smile or nod of the head in acknowledgment that you have seen and been seen. If you join a room 'in progress' you say hello.
This morning when I say good morning there will be a chorus of good morning's back and a few smiles. And people will stare. The older ones will be trying to figure out who I "feature' (look like) that they know. Some will be certain they know me. Many of them do. From time to time I become a public figure.
Others will look at the lighter tones of my skin (one of the odd by products of being quite ethnically diverse is that when you put me in a group, suddenly preconceptions about me ring false.) and wonder why I am not in the private part of the hospital. Younger people with dreads will make judgments about me that if made by me about them, would lead to war.
I just looked back over what I typed, quite quickly, with my right hand and corrected about six typos. Capitals are the most difficult as my left hand scuttles forward to help (it knows it has a job) and despite its best efforts it misses the key it aims for.
Poor sad left hand. There is a surreal quality to holding something in your hand and watching the grip you have relied on all your life just melt away while soap, pens, coins, whatever become animate and eel their way between the fingers that used to help me talk as well, and now make random flights through space and time or, more and more, cling tightly to my side because they no longer recognise the edges of my world and graze their knuckles on a wall they no longer feel coming.
I talked to my left side last night. I made a promise. One that scares me. I will do whatever is necessary to bring it back. It has taken me a while to make the promise, because I do not break them once made except in dire circumstance. And I do not actually know what I have just committed myself to. I was hoping for more information first.
Then I looked at the pattern of the last few weeks, answers on the verge of coming, then withdrawn, the waiting, the uncertainty that has been so bloody unsettling. I realised there is one area where I can be certain, and maybe the lesson all along has been the need to reaffirm the things I have always known.
I can give up the uncertainty any time I want to. I can just have faith and commit to the program wherever it takes me. Show up, cooperate and do my best to heal. Bring back my left side. I will admit to an ongoing scepticism about the need for steroids though. I will not know the outcome of this until I look back on my life.
I have lost the moment frequently in the last few weeks. Waiting for appointments in the future. Looking forward as though somehow my eyes have gained the super power needed to see through the veils, the tapestry of time. around the corner from what is to what will be.
I have this moment, and I know I will do whatever is next -right now a cup of tea and shower- and the forums, the blogs are always a'room in progress' so good morning and good living to you.
I have seen more medical people in the last month than I did in the whole of the last six years!
And I cannot say that I am any happier or healthier for it. And although I have a lot of new information jostling around in my skull ( Medical History Made! Unwanted cells in brain 'pushed out' by information overload!) not a great deal of new knowledge.
And I have heard two doctors say 'I don't know' this week. Today I am going for three.
Yesterday was lung surgeon who was polite about my 'no surgery now' stand but is still pushing for time and tests.
Today is brain surgeon and I am hoping he will fully identify with my concerns about the difference each day makes in my physical condition. I have this secret hope that he holds power of veto over all the others so if he sees reason to panic (or at least, move quickly) everyone else will fall in line. OR he will be able to explain to me WHY we should put my brain and paralysis on hold while we determine if the mass in the lung is malignant. What difference does it make. And why I should not panic.
I have been dealing with all this for about six, eight weeks, no matter what anything is or is not, there is a long road ahead of me.
None of it is take a pill, be better in ten days. And while I can consider the road back to normal ( or near normal if nerves are permanently damaged) with a fair degree of equanimity I am going to start losing it if someone doesn't give me a bloody signpost soon!
My sister cannot stay here to drive me indefinitely. I need to organise what will happen to the on going aspects of my job. I have to make alternative arrangements for cooking for my mother once my sister goes back home. And stupid mundane things like washing dishes or my hair have become major undertakings. And my hair is short!
Okay, I have ALREADY started losing it. I accept that I am doing the best I can - and this old old voice I thought I had put to rest is screeching "there must be more you can do, something you've forgotten" Nothing like a couple of tumours to resurrect old demons!
The stress associated with the peripherals of disease is phenomenal and largely unaddressed by the doctors I have met. One really good thing, I have managed to convert from private patient, bleeding money, to using the National Health Service I pay for every paycheck. The referral to the lung doc starts a new phase so I could change status.
The other thing that is tough. I m used to being nose to nose with my mortality. I am on fairly easy terms with death, zen helps with that, but i talk casually about something that really does not rock my world right now. Then I see the horror in my mother's eyes. Her fear. And I get angry. Because I cannot fix this for her. Or for anyone. I can't fix this for me.
I look into the mirror and I wonder. Do they communicate? These cells wrenching my life to a brand new track? I look the same, a little tired maybe, till I move and i can tell, where you might not, where the rhythm and the flow is slightly out of cadence, missing, adding beats a stumble on the turn, fumble on the grasp that turns perfection into damaged, in need of work, of help, of healing.
Right now, it is raining and I need to walk outside and cry.
I keep wandering around today. My apartment, picking things up and for the most part putting them back exactly where I took them from.
On line, logging in here. sitting looking at an empty text box, wandering over to the forums and giggling like a loon as i add something silly and,on occasion, incomprehensible to the wondering why and fun with words threads. The best time I have had on the forums in a while.
Then pull up a poetry thread box, leave and pull an email blank up and leave that as well. Logging out in silence. Going back to my book on flyposting and genetic experimentation that leads of course to murder.
A chapter read and I go to fold and put away the laundry and cry a little because I cannot fold a T shirt.
Back to the book, back here, back to staring at the half written thoughts saved as 'in progress' just in case one day they grow legs and join the dance in my imagination. hey sometimes they do, but not today. A cup of tea is too much effort at the moment despite the gleaming order of my kitchen. Safe place amid the chaos crowding close behind my eyes.
I watched an odd movie last night. All talk, no action. called What love is. There is one line (or three) delivered near the very end that held the meaning of life for just the time it took to hear them, then it spilled away the way it always does. The gist, very roughly was: Love is a one way street going out from you, it is what you give and keep giving, not ever about what you get back.
I had an AHA! moment then Cuba Gooding spoke and the moment had been lived.
Hate when that happens!
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