The full import of the situation is slowly settling in. Hard to avoid the issue now that you have a shit-bag connected to your stomach. The word useless asshole has taken on a whole new meaning. A colostomy bag is front and centre on my stomach, a sure sign of a changed way of life.

I also have a neat row of staples going down my stomach. 38 of them to be exact. Dr. Kennedy did a great job with those. Once all the tubes, staples, pipes and stuff are removed, you are left with the bag.

Janet bought a Queen CD with We Are The Champions so I could listen to it. Diana lent me a bunch of CDs to while away the hours. Nancy lent me a relaxation CD, courtesy of Jacquie. Marina got me one of those pathetic Word Search books. I have magazines and books. Lots to keep me busy. The only things I could do with ease was the relaxation CD, and the Word Search book.

I could think as the grogginess started to ease up. I could talk, mostly with Janet. And I could cry, which I did a lot. I cried when I first listened to the Queen CD. Uncontrollable. Trying to figure out why I am crying so much. Yeah, yeah, I would not be normal if I did not cry. But that is not the point. Life has changed dramatically, possibly for the worse, but why the abundance of tears? I do not feel sorry for myself. No wallowing in self pity here. Waste of time. Serves no purpose.

I do not fear death. Baha’is believe in life after death. There is continuity. No idea what form it takes, or where or whatever. None of that is important. Just that death is not the end of life. The soul carries on to the next phase. A bit like the birth of a child moving from the world of the womb to this one. And so we move from this womb to the next life.

This lack of fear removes a huge psychological problem from the equation. And change does not scare me. We have moved and changed our lives way too often for me to be scared of change. Of course, this is change on a grander scale than any I have experienced. But I am not alone in going through this. Janet and Devin are there, and as it turns out, so are a WHOLE bunch of friends and relatives in totally unexpected ways. And yet, I do feel alone a lot.

I tell people about the bag, and no one quite understands. How could they? What a concept. A bag attached to your stomach through which you go to the bathroom. You can hear the doubt in people’s voices when you talk about it. So I tend to show the bag just so everyone has a fair idea of what we are talking about. In the great scheme of things, the bag is becoming a minor issue specially in context of the bigger picture of everything else that is going on.

And yet, the tears keep coming. When people are kind. When I look at the home videos my nieces sent me. When a phone call is received from a friend out of the blue. I go through days of extreme sensitivity where the tears are closer to the surface, and other days, when they seem to be more controllable.

Janet and I had long discussions while in hospital about all this. Where is life taking us? What happens now? How much time will be spent on treatments? What does the new life look like? So many more questions. Questions, and more questions. Very few answers.

The lack of clear answers adds to the difficulty of coping with everything. We have a clear direction about where the chemo is going. Starts probably next Thursday and will last for whatever length of time is required. No end point. And that is OK. What is not OK is not knowing how the body will react. Nausea and diarrhea are a given. Or not. As is the loss of hair. My sister tells me all body hair is lost. The first reaction is contemplating the loss of hair on the head. Not such a traumatic event where men are concerned. But then you have to consider the rest of the body hair, the ones on the back, legs and arms. That becomes a little more troubling, but not too much. My sister tells me to be prepared for finding hair on the bed when you wake up.

The hair is not a big deal. I might even have a head shaving party, and invite my bald friends. My hair will grow back at the end of it all. So no worries there. What is more troubling is the body’s reaction to everything else. The weakening of the immune system, the same immune system that has saved me so many times during this whole process. The one that makes people believe I am so strong. It will get weakened and exposes you to all sorts of things. Cannot shave with a razor in case I cut myself. Or be exposed to people with a cold. What about H1N1 which has not troubled me at all. It suddenly becomes an issue. Do I walk around with a mask? Or have a mask in the house?

The oncologist said we would take a breather from chemo at some point next year. I think that might be a good time for us to go somewhere like Cuba and just absorb the sun, recharge the batteries.

This has been a bit of a rant. There will be more. Bear with me.

3 Responses to “Think, talk, cry, talk, cry”

  1. Farokh thanks for getting back to the blog. I got an email from our HC editor today saying she read the whole thing: “Farokh’s blog is amazing.” I agree.

  2. Farokh, thanks for getting back on the blog horse. I’ve managed to figure out how to spell your name, and have read up, start to finish (so far) all of your entries. Again, my thanks for sharing this journey. If it doesn’t change my life, I want you to beat me the next time we’re in Cuba together. I hope to see and admire “the bag”.

  3. Hi Farokh! I agree with the editor Nancy knows: your blog is amazing. Janet told me about it when we spoke today. I've just read your September entries and I feel like we just had a long, engrossing visit. Love your optimism and how matter-of-fact you are about all of this, even the crying. Wish I was there to give you a kiss and take a walk with you and Janet.

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