I Have Cancer - colostomy

Air Conditioning

Jul 132010

We had a central air conditioner installed this past weekend. Our furnace died about three years ago. It was a year of failures. We were having a Christmas party at our house. Lots of people generating lots of body heat. No one noticed that the furnaced had ceased functioning. I was not too concerned as long as there were people to heat up the house.

People left. Damn. I had to tell Janet. She would have figured it out anyways. We live in a 100 year old house. There is no insulation in the walls, except on the third floor which we renovated when we bought the house. The temperature started dropping slowly overnight. Winter decided to rear its ugly head with one of the coldest weeks of the season. Diana lent us a space heater which was moved from room to room. The fireplace helped a bit, though fireplaces tend to draw heat out of the house.

We found this guy name Amit who owns a company called NASA Heat and Air Conditioning. I have no idea what NASA has to do with it, and how he gets away with using that name. The furnace was installed within the week restoring heat to a very beleaguered family.

Janet decided that this was the year we would install air conditioning. I am not a big fan of these things. They suck power and give you colds. People tend to keep the temperatures way too low causing a shock the system when you go outdoors. We have promised ourselves to avoid those issues.

We have just had a heat wave in Toronto. Daily temperatures in the low C30′s. The problem has been though, that night temperatures have not dropped making the situation far worse than the daily highs would indicate. The city kept issuing heat alert advising anyone with a chronic condition to stay indoors. That is me this year. We sprung for the AC.

Amit tells us that we may be disappointed with the effect of the AC on the third floor where our bedroom is. Old house, old vents badly installed. We are lucky. The third floor is cooled down sufficiently for us to sleep in peace. We open the windows which might defeat the purpose of the AC. We like open windows in the summer. So much more pleasant to sleep that way. Heat rises, and we are on the third floor. The open windows should not affect the AC any.

We have set the thermostat at C25. We will monitor things and see what the best temperature is for our comfort.

Amit warned us to not react to the heat with a keen jerk reaction. The heat will pass. We have lived in this house for 11 years without AC, why now? The house tends to heat up toward the middle of July. We have fans everywhere to cool us down. We suffer through the months of July and August before things cool down in preparation for the coming winter. So why now, Amit wants to know.

We tell him about the cancer and the need to pacify the chronic sufferer. We have this conversation on Thursday afternoon. The AC is installed on Saturday. He would have installed it on Friday, except it rained making it impossible to do any work. He is a charming and accommodating man.

The installation is done in about four hours, as promised. We sit and chat for a short while. He tells me I should look up Swami Ram Dev who teaches people breathing exercises that have produced miracle results. Do I speak Hindi? The good Swami has a show on television. Among the many languages I speak, Hindi is not one of the preferred. Look him up on the web. He is amazing.

My car wash guy wants to know how I am. Now my furnace and AC guy is trying to help me as best he can. How amazing is this world and the people within it.

I have said this before, and I will say it again. The support from all sides has been amazing. The sources of the support have been amazing as well.

I went to get the car washed the other day. Let me know if I have told this story before. This is one of those drive though joints with surly men who dry your car at the exit. You have to get out of the car and the chain mechanism in the ground drags your car through the wash. Our Mazda 3 has windshield wipers that react to water on the windshield. They come when it starts to rain and turn off by themselves. Wonderful technology. I have to always remember to switch them off.

I got out of the car. Somehow the seatbelt caught my colostomy bag and ripped it off. Needless to say, a mess, on my hands, my shirt, my pants. Pretty much everywhere. There is guy who guides you to drive the car to the chains. He also sprays the car to loosen the grime in preparation for the wash. I am always amused that they only spray the drives side. The passenger side obviously does not get as dirty.

He did not even flinch at the sight of the mess. He immediately pointed his hose to the gutter and told me to wash my hands. No fuss no muss. Much appreciated. I went inside looking for a washroom. There were two reserved for the staff only. The girl at the counter was not much help. Sorry, staff only. I lifted my shirt to show her the damage. She did not hesitate and passed me the key to the washroom. I cleaned up and went back out to talk with her. She had reacted so quickly and again without appeared grossed out by what she had seen.

I thanked her for the keys and her lack of reaction. Oh, she say, I volunteer in an old people’s home, see this all the time. How are you, she continues, looking just a bit concerned.

As I said, support comes from the most unlikely sources.

Thanks to all.

Neglectful

cancer, chemo, colostomy, fatigue No Responses »

Oct 192009

I have been neglectful, as Sharon has so kindly pointed out.

Last Thursday was not a good day. As I have said many time, not sure why some days go good and others fail to impress. Devin and I went shopping at the St Lawrence Market. We were out of fruit which means I have nothing to eat. My breakfast consists of porridge and a whole bunch of fruits. It depends on what is available. Bananas, cactus pears, pears, melons, grapefruits, grapes, oranges, pomegranates. Not all in one shot of course. But I graze on this stuff all day.

We finished shopping with the purchase of one of those smoothies. I did not feel very well, and put it down to being tired. We decided to surprise Janet at her office. But first, a bite to eat is in order. We stopped at Quiznos for a sub. I had a small one and Devin bought whatever. We took our meals to Janet’s office and ate there. She decided to cut her day short and come home with us. I lay on her couch. Ate only half my sub and was not feeling good.

I have a new sleep regimen. Go to bed between 8 and 9. Take half a Lorazepam. Do a couple of Word Searches and wait for sleep to take over. I can usually tell as the eyelids start to weigh heavy and searches take longer. I usually end up turning out the lights around 10 and gratefully wait for sleep to take over. So far, it appears to work reasonably well. Every once in a while, the drug has little effect and I lay awake for longer than is reasonable. Case in point, right now.

I usually wake up between 2 and 3 to empty the colostomy bag. Nothing wakes you up faster than the 5 to 10 minutes it takes to perform that bit of thrilling business. I go down and have a snack, come back upstairs about an hour later and take the other half of the Lorazepam. The second hit is usually a lot more effective and I sleep through the rest of the night.

I find the whole drug situation a bit disquieting. There is little doubt that they are effective. I took a nausea drug this evening because I felt a bit queasy after dinner. It is taking me while to get accustomed to taking drugs whenever you feel something is amiss. I do not believe there is a risk of overdoing things, since the minimum dose works so effectively. It is still a strange feeling to be dependent on so many of these pills.

While Thursday was a disaster, Friday turned out to an amazing day. Devin, Ariela and I had lunch at the Sunset Grill where they serve an amazing crab salad. I could not finish it and we ended up taking mine home. Devin cleaned out his lumberjack breakfast.

Finally paid a visit to Wellspring where I think I will spending a fair bit of time, specially in 2010. We signed up for all sorts of things including art. Last time I took art was in school in England. There were 15 students in the art class and I had the dubious distinction f coming in 15th in the class. The teacher was very encouraging. I think I can let bygones be bygones. Enough time has lapsed for me to try my hand at this again. I will keep you posted.

I slept in quite late on Saturday morning. Shaved and showered and decided it was time to leave the sweats at home. I have been dressing in sweat pants and T-shirts since coming home from the hospital. I put on a pair of jeans and a dress shirt on this auspicious day. Another milestone. We went to the Kinsman Robinson gallery, and came home for a cup of tea. Nancy joined us.

Took a nap. Got dressed again to go to Heather Fraser to celebrate her birthday. Janet and I went out. Could not believe it. There we were driving like we were almost grown ups and allowed out for the evening. A heady experience.

Went shopping on Sunday at Canadian Tire for light bulbs. Sounds mundane and it is, unless you have not been able to do anything close to it in a while.

A good ending to the week. Which bodes well for the next week when I will need all my strength for the second chemo dose.

Can’t wait. Love the Blast.

Think, talk, cry, talk, cry

cancer, colostomy, crying, fatigue, life 3 Responses »

Sep 282009

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.

Suffusion theme by Sayontan Sinha

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