I have been very disturbed since the last CT-Scan results. We were progressing in such amazing ways that the sudden stop has been very unsettling. We knew it was coming. Everybody stop reacting to their Chemo cocktail at some point. 17 Chemo sessions is a lot to put the body through and expect stellar results. At some point the body just gives up and stops reacting. I am there.

The repercussions of this are not known. We live day by day not expecting much. This is not a negative feeling. You just have to learn to appreciate all things at all times.

I was lying in bed last night when the visual of walking along a precipice presented itself. I imagine a whole bunch of us walking along this precipice not daring to look down. Some stones crumble off the edge as we take our walks and fall silently into the unseen depths below us. A bit of our life chipping away? Fewer days ahead?

The edge of the precipice is crowded. Some are closer to the edge, others further up the small hill that abuts the precipice. We are all milling about, recognising some faces, talking, making new friends, contemplating, sitting in silence. We lose someone occasionally as the ground beneath them crumbles taking them in the void below. Some people congregate taking solace in the crowd, others stray farther afield treasuring their solitude. Yet others remain close to the entrance hoping against hope for a way out. The nature of the crowd changes continuously.

People move towards the precipice, as life is coming to a close, then back off as they are given a reprieve of sorts, more time. Time for whatever you think deserves it.

In the distance you see a wall behind which there are suitcases and backpacks and purses and containers. Everyone comes here with their baggage, real or imagined. They topple to their fate leaving it all behind. It accumulates gathering dust, rotting into the ether, a reminder of sorts. I will let your imagination sort that one out. There are tags on everything identifying the owner, some still with us, others long gone. The dust of time hangs heavy in the air. No one ventures further in.

Should you dare look down into the precipice, you will see nothing. Deep, cavernous, never ending, the sides shrouded in mist. People toppling over in silence. No screams or shouts of surprise at the fall. If you listen carefully, you might hear a heavy grateful sigh. A soul leaving the body perhaps, a sigh of gratification maybe.

There is a sense if resignation amongst the crowd. No one has given up. There is no sadness. The inevitable fall is staring us in the face. Yet, we mingle, compare notes, talk, laugh and make the best of it. No longer a question of why but rather one of when?

The first did not have an answer, and the second is no better.

No cancer patient does not ask that question.


Why Cancer?

Why me?

Why now?

There are no answers to these questions. Really not one. I should end this blog entry right here.

I am surprised by the number of cancer patients and supporting family members who are or have become devout believers in God. Some blame the Devil for their predicament. I have written about this before. It is fraught with errors and paths that will lead to totally wrong places.

I went to see a psychiatrist, one that specializes in cancer patients. I told her about the incessant Why’s. She smiled and said, you know there is no answer to that question. I really should end this blog entry here.

We keep asking. I am hoping to stop asking soon. Seems like a total waste of time and energy.

The final question in this loop, is to What end? What is the purpose of anyone getting any sort of chronic debilitating condition?

This brings up an interesting question. Why do we, as humans, assume that there is a purpose to everything? We seem to insist that every action that takes place has a reason for being.

I take a lot of pictures and am often approached by people asking me about what I am doing. They look at the camera, seems professional, look at what I am looking at, and finally say, what are you taking a picture of? I am never sure what the answer is. I always come up with something. Look at the parallel lines formed by all these pieces of construction. Oh yeah, wow, cool, thanks. Those balconies are made of wrought iron and they all look similar, if not at different heights, makes for an interesting view. Oh yeah, wow, cool, thanks. Most of the time, the pictures are experimental. You take, you look, you don’t see what prompted you to take the picture in the first place. It was just fun to do. Digital cameras make this sort of experimentation even more fun. You keep the picture and look at it every once in a while just to be sure you have not missed anything.

There was really no purpose to taking those pictures. I am killing time while Janet shops. I am just having fun. No purpose, really. I might find a use for the picture at some later date, by for now, it can sit somewhere in the bowels of my computer waiting its turn.

No purpose. Just fun. Or not. A cold is no fun, and as far as I am concerned, has no purpose associated with it. Yet we insist on asking the question, why did I get it, what is the purpose of me being debilitated to this extent? I have asked this question of many people in various conversations.

The most common answer is that it forces you to look at your life and re-evaluate things. In which case the 75% of the population who will not get cancer is missing out on one hell of an opportunity. Either that, or my view on life was deficient in some way.

The best answer was that it is a way to cull the population. I do not have a problem with that. Why cull me, take that guy in prison, or the other offender. WE are going in a loop.

There is little doubt that you re-evaluate your life. In some ways you have little choice. You are sitting around wondering what to do with yourself. One activity a day seems all that you can handle. The rest of the time is spent thinking. At least for me. Little choice. I day dream about winning the loto so that we can renovate the house. What would you do if you had millions? I think of new products, or how to improve existing ones. I send eMails harassing my friends. They probably feel too guilty to tell me to stop doing that. I jest. I always ask if they want to receive stuff. I post regularly to all sorts of social media sites. I keep busy until I am too tired to keep busy, then the thinking starts all over again.

The mind churning, the questions returning, the doubts, the guilt, then the thankful sleep that stops everything cold. You wake up being a bit reasonable with yourself.

I have to keep busy to stop some of these questions from dominating my time. Fleeting time. There seems so much of it until it is gone. Then it seems that there was so little of it. I am told that I should write down what I do in a day. No time for that. Hah! I am so funny. Really, it matters little in my condition. Time can be fleeting, temporary, short. Whatever.

I have multiple projects on the go, a couple of which I am not qualified to do. Requires a bit of engineering design. I will have to find someone to help. Fetneh laughed at me when I told her about them. Make sure everyone has your passwords, she says, just in case, you know. We both laughed. Funny girl. I am writing a cartoon. Again, have to find an artist, though I might try my own hand at it first. Leslie is insisting that I do that.

Keep busy. Stop asking Why. It is what it is. Deal with it and move forward.

Move forward. Keep moving.

We become cancer patients and are told that it is now all about us. I suspect that all chronic disease patients are told the same thing. It is a way to make us feel less guilty about our condition. We are an instant burden to those around us. And Lord knows there is a lot of guilt.

Some of us go from being full fledged contributing members of society to depending on everyone else for our daily needs. Suddenly rendered useless by the sudden waves of exhaustion that overwhelms our minds and bodies. Spending too much time in bed, with way too much time to think of our plight, which is supposed to make things easier, and often times does. Until you hear the vacuum going, that was my job. The cleaning. The cooking. All the mundane activities that you used to rue, you now want to take part of, oh so desperately.

It is all about you. Take advantage. Lie around and get better. Let others pitch in and do the work. It is probably good for them to see how much work it takes to run a house. How much work you did. Janet and I have reversed positions. She was in the main role, and I in the supporting one, making sure the laundry was done, so we never run out of underwear, and so on.

It is all about me.

I was given a present recently by a friend. Janet was not sure how I would react to it. It was a graphic novel published in 1994 called Our Cancer Year. The authors, Harvey Pekar, and Joyce Brabner, are a husband and wife team. She wrote, he was the victim, the afflicted one. He comes across as a real jerk. Why anyone would want themselves portrayed that way is beyond me. It is a bit like those shows, you know the ones, Canada’s Worst Drivers. Why would anyone in their right mind want to be on those. Hey look everyone, I am a bad driver, cheer for me.

I almost did not finish the book. The guy delayed his visit to the doctor until the tumour was very large. And he works in a hospital in the U.S., and is covered by insurance. He delays until the operation becomes more major that it should have been. A bit like not going for a regular colonoscopy when you turn 50. Not that we know ANYONE who has done that, now do we? He is then subjected to chemo treatments and all the usual stuff. He is a real jerk. At one point in the book, his wife mentions that she became an expert at crying in bed without shaking so as to wake him up.

We are so self absorbed in our own plight that we forget that others are suffering too. I remember when my mother was going through her cancer. It took her life within a year. She was always smiling making slight of her issues. We were all crying, losing sleep, wondering what the future held for her, for us. She was the matriarch. Nothing happened in the house without her say-so. She was the ruler. What would we do without her. She spent her last three weeks in the hospital. My Dad, brother and I made funeral arrangements. No sense in leaving things to the last minute. It was a bizarre experience to say the least. Baha’i rules and regulations require that the body be washed and wrapped in a certain amount of silk material in preparation for burial. Prayers are read during the process. My sisters had to do the honours. It was quite a to-do making those arrangements with the funeral parlour. We are talking about 30 years ago.

Here I am, 30 years later, going through some very similar issues as she did. Operation, a major one, followed by recuperation, then chemo. Oh that chemo. I am having a better time of it than she did. Still self-absorbed, effectively ignoring the feelings of those around me, or at the very least, paying scant attention. Asking the same questions over and over again, never remembering the answer. It is all about me after all. I am entitled to be self absorbed and forgetful.

The conversations in the Art Therapy sessions have reinforced these notions. Why do people not understand what we are going through? Why do we keep having to explain ourselves? Defend our plight? You have read about this in previous postings. Yet here we are totally oblivious to others. This appears perfectly normal and consistent with many dealing with chronic conditions. Does not make it right, just the way it is. The incessant questions for which we do not have answers, the constant struggles with our own emotions, the ups and downs that plague us daily.

People around us are suffering as well. In some ways more than us. We have a bit more control over what we are going through, believe it or not. I think it is always easier for the person with the chronic condition that for those around you. Hence the constant looks and questions from Janet whenever I make a move. The concerned look in my sister’s eyes when she is here and I make a move. The constant monitoring of my barometer like voice fluctuations. The phone calls and emails that come before and after chemo days, or oncologist visits. All are part of the new normal, the equation that will eventually pay dividends.

I have caught myself bringing the conversation back to my cancer when people dare talk about anything else while I am in the room. How could they be so insensitive? I did this several times, before noticing the trend. It disturbed me. The graphic novel added one more element to consider.

I asked Janet one night at 11PM whether she had cried a lot. She smiled and said of course. I could not talk about it any more. Just had to know before falling asleep. We talked about it the next day. She was home without me for 10 days. Lots and lots of time for crying. She cried with me in bed. She cried. I know how much my condition has affected those around me. Devin is always hanging around the house. As it turns out careful to say things that would not offend me or result in a heavy discussion. This has to end.

Judy dropped by for a visit. We talked about me for a while. I asked her what she was up to. To my great relief, she talked about herself, and her plans for the next while. It was wonderful to listen to her, to contribute in some minor ways to the conversation. The Art Therapy sessions always start with a taking of the pulse. Asking each of us how our week was. We started our assignment. I realised that through all these sessions, none of us had ever asked the moderator how his week had been. I asked him. We found out a lot about him. It helped that there were fewer people in the session. But still. No one had asked him. It is an exercise I have promised to follow through with.

Turn the conversation to others. Ask questions. Talk less about myself. There is something to be said about It is All About Me. But surely there also has to be a limit to it. It might be an evolutionary thing. You are dealing with your own issues, and at some point are more prepared to let the outside world intrude. Expand your field of vision. Take the blinders off. Bring a bit more noise in your life.

Cannot be anything but good for the soul.

© 2010 I Have Cancer Suffusion theme by Sayontan Sinha