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.

This is not for the squeamish.

You know somewhere in the back of your mind, the question. You know the question,  don’t you?

What happens if the bag comes off while you are sleeping?

Janet and I have laughed nervously about this possibility. We imagined waking up in the middle of the night to change the sheets, shower, what else?

I  woke up around 2:30 for a bathroom break and assessed my situation. This is a constant. I felt I could wait till 4:00 to clean the colostomy bag. I woke up at 4:00. And fell right back to sleep. The good news is I slept through most of the night. This has become a non-event really, as  I sleep through most nights.

The smell. You know it when it happens. I woke up rather brusquely to the smell. It is now 5:45.

The smell happens regularly, and is usually due to the bag not being clipped on properly. You have to squeeze the ring all around and listen for the telltale click to make sure it is sealed properly. Every once in a while, you miss a click and the smell comes up. The reaction is to reach down and squeeze the ring again all around and are relieved when you hear the click you missed before. All good. This is a one handed operation.

At 5:45 this morning, the smell. There was really no reason for it. The bag was clipped on properly since the smell had not been there all night. But here was the smell.

I reached under the sheets to squeeze the ring. Something went dreadfully wrong. The ring was moist. Highly unusual. I felt further around, and it got moister. Wait. This was more than moist. I yank off the sheets. Yes, I have a second hand! The bag was off the ring entirely and lying on my leg.

Pick up the bag and make my way to the washroom to clean myself. By now, the discharge (how discreetly put) is all over both my hands. My worst nightmare. I clean my hands with toilet paper. Start the wash process. Clean the bag, inside and out. Clean myself. Then clean myself again. Wash my hands.

All the while, there is more discharge coming out. I am cleaning all he time, and cleaning again trying to catch the discharge as it oozes out. The roll of toilet paper is very active. I am cleaning feverishly. Finally get the bag back on. Check my body and start washing the discharge from various affected parts. Discharge is on my stomach, thighs, feet.

I come back to bed to check the sheets. Janet wakes up and I fill her in. Simple. The bag came off. Lights come on and we check the sheets Miraculously, nothing.

I sigh and start laughing. How different this would have been if it had happened on Saturday. I would have broken down in misery. As it is, I laugh, and get back in bed.

The smell. It is still there. Lingers as some smells do. Stuck in your nose. It won’t go away.

Get out of bed and check things again. The flange is soaked, and not necessarily in water. I have to change everything. Might as well shave and take a shower. Feel bad for Janet. We are both wide awake by now.

Discharge is constantly oozing out. How fast can I shower. This is getting funnier by the second.

I will cut this short. Shave, shower, air the skin, finally get the bag back on.

Smell gone.

Every once in a while, you wake up in the morning expecting this to be a nasty dream. But there is this bag thingy hanging off your stomach to remind you of the stark reality.

We, Janet and I, have this dream often, except she has it without the bag being on her. We remind ourselves often that this has been a very short journey so far. The operation was only on September 2.

My wound nurse, Annmarie was over on Tuesday to look at the gash on my stomach from the sutures that did not hold. No gash to amuse her. I am healed. One less bandage. Another milestone.

I am done with the daily or twice a week visits from the nurses. Barb called today to try and figure out what my needs are moving forward. The only thing left for the nurses to do is to come every two weeks to disconnect me from the chemo bottle. They are not rid of me just yet.

Annmarie and I talked for a while while she filled in her report. Talked a bit about eHealth. The information the nurses complete on us remain in our possession. They are not transferred to our electronic files. A glaring gap, I think, in the information gathering process.

We talked a lot on how we should keep our sanity. There is no set rule of course. Everyone has their own method. We talked about relationships that are created with patients. How different we all are. The work load. Some of the nurses work from nine in the morning to nine at night. We talked about the need for more communications between the nurses and the hospital staff. More training. More openness. I have to invite her over for a cup of coffee one day.

One more step taken normal a more normal life.

Today was a good day.

Got my H1N1 vaccination from my family doctor, or at least the nurse. My doctor was giving a speech in Calgary. Something to do with whether extroverts or introverts get better grades or perform better. I will have to get the lowdown from her next time we meet. I have had no side effects from the vaccine. The conundrum with this is the following. One of the possible side effects of the vaccine is fever that they recommend you take Tylenol for. One of the side effects of chemo is a temperature for which you re forbidden to take Tylenol. What to do? I got the vaccine a week early so it would not interfere with chemo.

Went for a drive to Bayview Village, all by myself. This is the longest drive I have taken, and the longest I have been out of the house. It felt very good, somehow. I did not take a nap when I got home. I tried, but the phone kept ringing, so I gave up. Did some research in changing the look of this blog. Watched some TV. Not much. Still prefer quiet over noise.

Went to Chapters in Bayview Village and saw a couple of books I think I want to read. Just that is interesting. I have a book on my shelf in the bedroom that I have to read, and a couple of others downstairs. First time in three months that I felt like reading something that has nothing to do with cancer.

Devin has a date with me tomorrow. We are trying to make this a regular day for the two of us. We are going to Taps in the morning to look at shower heads, the height of excitement, I know. We are putting a shower in the bathroom on the second floor. Then lunch (shawarma), and finally a visit to the botanical gardens downtown. I think I will pass on the relaxation and visualisation session this week just to spend more time with him.

It all sounds a bit boring and every day. That, of course, is the whole point. I am attempting to get some sense of normal back in my life.

I accept that chemo week is going to be bad. Maybe that is too strong, how about not good. Chemo week starts on Thursday, with a preamble on Wednesday. It should end the Wednesday after, hence the week. No normalcy in defining the week. So there will be the occasional redefinition of things. Once chemo week is over, the more normal part of life has to start. I did say ‘has to start’. I am not giving myself a choice.

I have to start taking pictures again. Go to the movies. Eva Almos has volunteered since her schedule is more flexible, which allows us to go to a matinee. Fewer people, means less risk of catching something. More reading. More meeting people for lunch at their place rather than mine. More of anything that will make me almost forget that there is a bag hanging on my stomach.

I guess that is why the occasional cheating about normal definitions does not matter. You can never forget about this bag. The tape that binds it to your stomach is a perpetual reminder. Some level of normalcy is a must.

© 2010 I Have Cancer Suffusion theme by Sayontan Sinha