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.

One of the recurring themes is where my inner strength to cope with this is coming from. It is a good question, the answer to which has eluded me.

I attended a Relaxation and Visualisation session at Wellspring this afternoon. There were six of us in the room at various stages of the journey. The session was split into three sections, relaxation, open discussion, and visualisation.

The subject of journaling came up. Two people mentioned that they were journaling.  I mentioned that I am blogging, a remark which was met with some silence followed by comments of not having a computer, or being computer illiterate. Journaling is a private affair, while this blog lays all bare.

I made a decision very early on to open this blog. As I have indicated in past entries, the results have been amazing in so many ways. I am truly astounded at the responses I am getting.

One of these comes from the very eloquent Sharon Singer just prior to my second chemo session in which she reminded me of all the people who are holding me during this process.

Janet mentioned in a conversation that she believes all this support results in a human positive energy current that is a web of energy created by all the people who are praying and thinking and talking about you. This came out in a conversation with one of her co-workers whose mother had cancer. That whatever happens outside is as important as what happens inside.

During this afternoon’s session, I was surprised at what appears to me a dearth of support for the other participants. This may be on purpose of course, since people tend to remove themselves from society. A huge quest for privacy.

I am now convinced that a huge part if the inner strength, such as it is, that I am exhibiting is the result of all the support I am getting from everyone, for which, I am eternally grateful.

I apologise for this entry, but I do not seem to be able to let go of this thought. Maybe because I have not found a satisfactory solution to it. This entry can be blamed on Lelsie who engaged me in a wide ranging and rambling discussion while I was trying to sleep.

The trouble with expressions  like fighting cancer which taken root in our lingo, is that you just cannot get rid of them. They have to be replaced with something.

The opposite to fight is love. Love your cancer? That is a stretch for even the most optimistic amongst us. I wonder what physiological changes take place in our psyche when we discover we have cancer.

The obvious sentiments are, well, obvious. I wonder about the ones that take place on a more subconscious level.

Very few people I know accept compliments graciously. It is almost as if we do not like our own bodies and cannot possibly accept that somebody else might see some beauty. Surely they jest. Deluded. Must be talking about somebody else. Do we, at some level, hate ourselves that much?

I wonder what happens when you suddenly discover  you have the dreaded C. Do you hate yourself even more? I doubt anyone you speak to will confirm this. You have cancer, do you hate yourself?

And yet, I cannot help but believe that it might be there on some level. We all tend to blame ourselves for “getting” cancer. We must have done something in this life, in a past life, to someone or something to deserve this.

I wonder if part of the healing process is to learn to love yourself, to learn to bask in your own glory, the pleasures you bring to life around you.

Can we replace Fight Cancer with Love Yourself?

The jury is out on the sleep resolution taken last night. Having said that, I slept quite well, if sporadically. But in the new spirit of any sleep is a good sleep, I accepted the vagaries of the night and woke up at some point in the morning in fine spirits.

This boded well for the chemo day. Strong physical being and emotional state are essential to a successful and painless experience. Since sleep and emotional state are directly related to one another, an accepted sleeping experience stood by me in the cancer ward.

Times have changed. I do not recall the level of consultation taking place when my mother was dying of cancer some 30 years ago. The level of consultation and trust that the nurses place in the patient are impressive. The nurse, a lovely lady named Sammy, from southern India, was ready to connect the Avastin drug. I had to stop her and have her consult with Dr. Hedley.

It turns out that Dr. Kennedy had not informed Dr. Hedley of her decision to delay the application of Avastin until the innards are in better shape. I figure we will wait for the CT Scan to reveal whatever it does before making a decision on Avastin.

Devin and I went to the hospital yesterday to do the blood work thingy. The Porta-Cath means that I do not have to have my veins tapped every couple of weeks. We discovered that when we did the blood work thingy two weeks ago. also turns out that it takes a couple of hours to process the vials of preciousness they extract from my poor and sorry body. Doing the blood work the previous day is highly recommended. The Porta-Cath meant that we could use the alternate blood extracting lab, located peculiarly in the Ambulance Waiting Area.

Devin and I made our way to this area which is tucked away down a nondescript corridor that could use a touch of paint amongst other things. There were no signs indicating where we should go. There is a movie in there somewhere. A door is all that gives away the possibility of the lab.

It is a very civilised affair. They smile and let you know that you are indeed in the right place. The waiting period was very short. The connection to the Porta-Cath with the all-too-familiar giant thumb tack was painless and quick. Blood extracted and you are free to go. The best gesture was leaving the thumb tack embedded for use the next day. One prick and you are done for two operations. How civilised.

Once convinced to way lay the Avastin, the other drugs were connected and all went very smoothly. Done in two and a half hours. What a difference from the previous session.

I told you last time about the clubish atmosphere. We met a couple of people who were done last time. Almost had a cup of coffee with everyone. Some of the nurses even recognise you. Not sure if that is a good thing or not.

Devin is practicing the piano as I am writing this. Brings joy to my heart, though I cannot wait for him to become a better player!

And now for the check list:

No nausea

No diarrhea

No blood on urine or stool

No allergic reactions

No temperature

Hair intact.

Margaret Wente wrote a charming article in the Globe & Mail on the subject of breast cancer. More to the point, on fighting, conquering and surviving cancer. I have already made my opinions known on this topic, and this article only confirms me in what I wrote.

Breast Cancer is a very physical presentation of cancer. It is vivid and devastating. Most other forms, including mine are well hidden. I got dressed in regular (as opposed to my sick) clothes on the weekend. Nobody can really tell that there is anything wrong, let alone how dire things are.

Raising money for Breast Cancer by whatever means, only increases the attention that is paid to all forms of cancer. While reading on this, it appears to me that the “cures” for want of a better word, for cancer are many and not one. The cures will apply to all sorts of cancer and will not be limited to only one. Eating fresh organic fruits and vegetables, reducing the amount of red meat that we consume, help reduce the risk of all cancers, not just one or two brands.

Thank you for a delightful article, Ms. Wente.

We lived in England prior to coming to Canada. Between 1966 and 1968, we lived under the watchful eye of a guardian, Dr. Abbas Afnan and his wife Shomeis. Dr. Afnan was also the local Medical Officer of Health. He was responsible for the closing of our school during a meningitis outbreak. One of his [...]

About

My name is Farokh Monajem. I ran into some digestive problems in the middle of June 2009. Janet (my wife) was out of town on business, which was not a big deal at the time. Unfortunately, things have gone from bad to worse. This diary is an attempt to make sense of it all. I [...]

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