Andrew and I were talking about the new normal which I have mentioned in the past. The concept of moving upper and lower bars of moderation came up in the same breath. Ah yes, he says, moving the calculus zero. Yeah, right. Think about it. Stop thinking as soon as your eyes glaze over.

I have mentioned many times that I look forward to being visited by everyone. It is one of the few pleasures left. All we have after all is said and done is the pleasure of each others company. I still hear that people are reticent to come forward. They are afraid of invading my privacy, of inconveniencing me. At the root of it all, I am guessing, is that people are unsure of what will happen if they do visit. What to say? How to behave? What is appropriate?

I wrote Andrew to tell him to get his scrawny ass over here. I wrote Richard to let him know that he has not seen me in too long while. He is also in possession of Season 5 and 6 of my Buffy CDs and I want them back. I can get away with this kind of talk with them. These are long standing friendships. No surprise when both came through.

To the rest of you I say this. Write or call the morning you want to visit to make sure I am up to it. I am not shy (have I ever been?) to let you know if it is not a good day. Things change sometimes between the phone call and the drop in. Kali was here the other day. She called ahead, is it OK? Yep, I says, come on over. I was asleep by the time she got here. Things were not so good. Could not open my eyes. I would hear snippets of conversation when I mustered up the strength to wake up a bit. And that is also fine. I lost my strength. Normal these days.

The conversation gets easier with more visits. I look great. Really do. Everyone is always surprised when they see me. This who see me more regularly discern between the better and not so better days. Others look at me with a bit of a puzzled look. You can almost hear the unasked question, really dying? You just don’t look it.

The situation is surreal. Say it, and say it again. We do all day. Often followed by it sucks. And so it does. We know it, you know it. Let us not waste time with political correctness and the usual decorum that accompanies visits and such activities.

Do not worry about bringing anything. Tea is always ready.

Visit, or I may have to subject you to a scrawny ass eMail.

Baha’is are not allowed to be cremated. We end life by returning to the earth, completing the circle. Our ceremonies are short, except for this one prayer for the dead. It consists of 19 verses that are recited 19 times. Though not considered a holly number, the numbers 9 and 19 appear frequently in the Baha’i faith.

We are exhorted to be detached from all material things. They have such little intrinsic value that we should put our efforts in improving our spirituality as opposed to massing huge amounts of wealths and possessions. Is that Van Gogh really worth millions?

Another virtue we are told to exercise is that of moderation. We are told to use moderation in all things. Including moderation in using moderation. There is a mind bender. There is an issue at this point. Maybe that Van Gogh is worth the millions as opposed to something else I have in my art collection. A moderate price indeed.

I was back in hospital last Wednesday evening with a temperature of 38.5. My temperature was down to normal by the time we got to the emergency room. I knew the answer to the question about whether I was there to see a doctor or not, this time around. I think I also looked a bit sicker than last time we went in. The emergency room was quite busy. I was eventually ushered in. Blood tests were done, cultures raised. I was held in the unit all night. They had to draw more blood at three in the morning for more cultures. All to prove that I was the picture of health, except for the amazing number of metastasized tumours in my lungs.

And therein lies the issue. The lungs are being infected at an alarming rate, with the tumours frolicking hither and tither having the time of their life. I was sent home from the hospital and told to control my temperature fluctuations with Tylenols. Not much the system can do for me at this point.

The trials had failed. I was referred back to Dr. Hedley who is on sick leave waiting for his knee to heal. EMails were sent and an appointment was made to see Dr Hedley on Friday afternoon. Decision time.

I was optimistic. I had assumed that the inflamed liver was due to it fighting the tumours and winning the battle. The hospital visit appeared to make a mockery of that thought, but I held on to my optimism. Dr. Hedley came in on Friday afternoon specially to see me. He gave Janet and I a gigantic hug and we went into a consulting room. Shahnaz, my wonderful nurse was there, as was a student nurse. We had a 90 minute consultation. The decision to be made was the following:

1. Do more Chemo. This is the FULLFOX treatment. Side effects include numbness of the fingers and toes, extreme sensitivity to cold, to the point where you cannot open the fridge door. Ideal for a climate such as Canada’s. There would be a 30% chance of success, which in my case would mean slowing down the growth rate. We would know within three months if it was working and would have to stop the treatments in six months. We would then be back to where we are now.

2. Do nothing and let nature take its course.

The obvious question that came up is what does the status quo mean. How much time do we have. I had to ask since that was the only way we could come to some decision. The answer was quick and shocking. I have two months.

Dr. Hedley was quicker to add that the number is not written in stone, specially given my record. Regardless of its accuracy, the amount of time left is counted in months. What were we expecting. A year, Janet and I said. He shook his head sadly.

There it stands, two to four months.

We are numb. What is there to say. My sense of humour fails me. I have nothing to say. Janet says she does not accept the verdict. She is defiant. But there is little left to say.

I have spent the last few days letting people know. Tears have flooded involuntarily. We are all sad, living in a surreal existence trying to make sense of this. Two months is such a short time. This is October, then November, then December and the end. Maybe. Still too close for any level of comfort.

We are about to start doing the practical stuff. Transfer all the accounts to Janet’s name. Complete a power of attorney.  Put together a living will? Make sure we have people to look after the house for Janet. The furnace repair man, the contractor, the computer technicians. We are making a list tomorrow. Janet is taking time off work so we can spend more time together. It is all so mundane, and yet I feel fortunate that we have the time to do these things.

I have stopped day dreaming. Seems little point to it after all. What will my kitchen look like? My garden?  The thoughts are barely in my head before the streaming stops. Almost as if my computer has frozen requiring a reboot. I have trouble sleeping at night. I lay awake often to two in the morning until exhaustion takes its toll. Is that becomes dreams are now harder to come by? What is there to dream about? I have no idea what the after life looks like.

Will I see my parents again? Will there be a welcoming committee? Bunch of girls in hula dresses dancing and draping flowers around my neck? OK, so I watch too many movies. Will I see old friends, like Judy Elder? I imagine the after life as a continuum into eternity. A progression of the soul as it moves through the ether. The evil ones start lower while the saintly ones have the advantage o starting on a higher plane. I figure I am somewhere in the middle. I will be happy as long as I can Gandhi and not Hitler.

We have also started planning for the final days. We have an appointment with palliative for November 9. An appointment with the funeral home on Tuesday. The strangest part of all this is that I am basically healthy and sound in great spirits. I called the funeral home. Has the person died yet? No, I am working on it. Everyone is amazed that I am still laughing and joking. I figure these are my final days. I would like people to remember me with joy on my face rather than sadness.

My mother spent the last three weeks of her life in hospital. She was not in very good shape. I spent a couple of hours with her on what turned out to be her last night. We had always been very close, except during her cancer period. She turned to Fetneh to look after her. The last night was very precious to me. I showed up at hospital around midnight. Those were the days of lax security. We talked a lot. She had made sure that no one would be allowed to see her in the last three weeks. She said the way she looks is not the way she wanted to be remembered. She died the next morning. I remember looking art her body lying in peace, finally and thinking she is indeed dead. The soul has left.  That last memory has remained with me for the past 31 years. She was right. Remember us with the passion we had when were in good shape, not as we lie in pain in hospital.

We are going to Atlanta next weekend. Leaving on Friday, returning on Monday. It has to be short. We cannot take the chance of something going wrong while in the U.S..  We have been told that things could go from right to wrong in seconds. I believe it. I wake up sometimes, not feeling quite up to snuff. I return to bed to recover my strength. This morning was one of those mornings. I seem to be fine now. Nothing like a bunch of steroids and Tylenols to perk you up. The steroids open the lung channels, and the Tylenol deals with the pain. Miracle workers between them.

We are staying in a hotel in Atlanta. More privacy. Devin is coming down from New York, and Fetneh is joining us from Montreal. My family is planning on spending a lot of time with me over the next little while. Fo’ad has cleared his schedule and intends on coming up to Toronto to spend a week at my place. Our hotel is opening its doors again.

The whole situation is surreal. I will keep saying that. There is not other way of looking at it. You talk about your own imminent death. What kind of conversation is that to have? Defies sanity. Everyone keeps asking what they can do for me. The only thing left is to enjoy each other’s company. Talk, laugh, have a good time. Nothing else matters.

I am planning to have a plain casket, made from pine. I am told that these are available. I would like a stamp placed on top that says: Property of God. The style will be along the type that was used in raiders of the Lost Ark. I am not going to have a guest book. We will instead have markers of different colours available so people can sign the casket. I can have your names with me for the next part of my journey. That will also save Janet from having to send thank you notes to everyone. Consider yourselves thanked.

This has been a very difficult entry to make.  We received the news last Friday. I have had this open on my computer for a week now trying to find the right words and cadence.

I thank you for being there. For listening, crying and laughing. Hopefully more of the latter.

The other side is the amazing support of friends and relatives. The good side.

We spent last weekend visiting friends and taking full advantage of their hospitality. Saturday was spent on the shores of Lake Simcoe. Janet’s cousin Deena, rents a cottage on Lake Simcoe every year. We spend a day visiting. Her brother Bryan and family come up as well, as does Eva. All good making for a small family get together. I had a good chat with David Margolese whose company I always enjoy.

We spent Sunday and Monday at the Fraser farm taking full advantage of the company and space. The Frasers were all there, including the delectable and always charming Ceilidh.

Heather Fraser is doing some very interesting work in all kinds of places. We talked (again) about the work of one of her friends. A Dr. Robert Buckman. He, the Doctor, theorizes that we are better off treating cancer by slow doses of Chemo instead of the current methods of bombarding the body with a huge dose of the drugs. The theory is that the cancer cells start dying when bombarded, but soon retreat, in effect removing the threat. The magic happens once we stop treating the body to the cancer drugs. At this point the cancer cells return in full force attacking the body with renewed viguour.

The slow treatment allows the body to be treated with low doses of the Chemo drugs, in effect fooling the cancer cells into thinking nothing is happening, that they are not under attack. This treatment lulls the cancer cells allowing for a more prolonged attack. The current trials have been done on breast cancer patients. The treatments are called DalCM-P. Goolge it, or read this article. I have an appointment with Dr. Buckman this coming Thursday.

I have started my Chemo vacation in a very slow mode. I have been away from my computer for a few days, which is very unusual for me. I have a lot of projects on the go, but find myself in some sort of a limbo state. Still trying to come to terms with all the unsaid words about why we are on vacation. I am eternally positive in my outlook, yet cannot help but wonder about the future.

People insist on telling me that they could die early when they get hit by a bus. I finally found a link that talks about the possibilities of ending your life with said method. As my friend Stone remarked, it is not a competition. If people insist on getting hit by a bus, they are more than welcome to go before me.

I am also receiving information about alternative treatments. More specifically, two people have written me with information on Y-90, an isotope based treatment directed at liver cancer. It is also used for treating metastasized cancer that are now affecting the liver. Items for discussion with Dr. Buckman.

I have not been interested with the type of cancer that is afflicting me until now. The rare occasion when the question has come up has resulted in me answering with something to the effect that I have the type of cancer that eventually kills you. A lot of the remedies I am reading on the web refer to very specific types of cancer that are affected by the treatments. It might be beneficial for me to know what type of cancer I do have to make sense of the articles I am reading.

The amount of information is mind blowing and very confusing. Following the idea that each body is different and reacts differently to everything adds to the confusion. There are cases of people who have been removed from treatments that have survived. People given 6 months who have lived for a lot longer. The comments of people who have tried certain remedies and are waxing poetic about it can also be misleading. Are they genuine? What was their affliction? None of it is corroborated with statements from reputable hospitals or clinics or doctors. We will believe anything that we think will cure us, however absurd it may sound.

How to differentiate between the absurd and the items that make more sense. Does the guy who claims that eating hot peppers on bread with garlic for two weeks make sense? A pepper based diet will rid you of cancer in two weeks he says. That diet will also be rid of me in less time. He just might be right though. Do I throw caution to the wind and attempt his remedy? The temptation is there, going against all common sense.

The next few weeks will see me working on a few projects. I will attempt to make my camera bag. Finish at least one of the two web sites I am working on. Maybe render my new kitchen to paper, as well as the new design for the back yard. All these things take time and concentration. I ams till sleeping in the afternoons. For longer periods than before the vacation. These get in the way of the projects. Do as the body tells.

Time to see the psychologist.

Thank you for listening. Thank you for your thoughts, support, and prayers.

We are slowly realizing that a lot of decisions are ours to make. If we want to quit the Chemo Session, than quit it is. We are in charge of our treatments. The doctors are there to guide and advise us. The ultimate decision is ours. This is a bit freaky. We are never sure if we are making the right decisions or not. Do we have the right amount of information to make a decision? Is it the right decision? To make matters worse, the doctors themselves are not sure either.

Every body reacts differently to the drugs. We were at a small party celebrating Kali’s birthday the other day. One of the friends has a brother with very advanced lung cancer. The gave him one Chemo session to which he reacted very badly. All the stuff they keep expecting me to go through. So sorry to disappoint. They removed his brother from any further Chemo treatments. So are you still on Chemo, he asks me. Yes. How long have you been on Chemo. Almost a year now, since last October. He was dumbfounded. I do not look or behave like a Chemo patient. Except for the afternoon naps. We are all different.

My blood work showed more positive results than last time. My liver enzymes are closer to where they should be with one indicative being totally in the normal range.

Dr. Hedley brought up the fact that we have not had a break since this thing started. I started feeling the pains in June 2009. By August 1, the diagnosis was fairly complete and certain. Operation on September 2, Chemo in October. Yikes. A year without a break. The doctor saw no reason why we should not stop the treatments right now and take our vacation. A CT-Scan was planned for Friday (today) to set a baseline for the future. Next CT-Scan in two months. Chemo would only start again if my situation deteriorates. A steady condition will result in a longer vacation.

A two month Chemo Vacation is on the books. Cannot believe it. I am in a bit of a daze. Basically what happens when you receive bad news or terrifically good news. You cannot believe your ears and shut down. Two months with no Chemo.

Janet and I stared at each other. What do you say? How do you react?

Doctor Hedley wanted to feel my stomach to make sure all was right. I suggested that things were still a bit tender. I can lift heavier bags now, but feel some discomfort if I overdo things. I am sure the healing process will speed up without the Chemo getting in the way. He appeared to confirm this. Good news. I am looking into going to the pool on a regular basis to strengthen the stomach a bit. I get bored swimming. Back and forth, you go. I will have to do it nevertheless.

Can we start eating raw meats again? I miss my steak tartar, sushi, and oysters. I was given the green light for sushi. Say it ain’t so. We decided on the spot that we would have that for dinner to celebrate. Diana, Nancy and her daughter Lily are coming over. Makes for a grand celebration.

Dr Hedley mentioned that we are in really good hands with his nurse, Shahnaz. We truly are. She is magnificent. She mentioned how much the nurses in the Chemo daycare like me. I walk in with my big laugh and cheer them up. The doctor just shook his head. All the nurses love him he says. Then gives me a gigantic hug before leaving.

Janet and I were left alone for a few minutes in the consulting room. She high fived me. This is the first time in almost a year were I could a glimmer of hope in her eyes. She seemed ecstatic over the news. She had a bright smile and a glitter to her eyes. That was enough to make me happy.

I phoned Fetneh and Fo’ad that night. It is always good to talk to them after news like this. It helps air my thoughts, clear the cobwebs a bit, get some perspective. I eMailed them of course, but that was not clear enough for them. Fetneh was jumping for joy. She made me promise to not withdraw from life because of this. The are chances of withdrawal symptoms creeping in if you are not careful. The hospital has been a home away from home, as it were. A very safe place to spend time in. You get sort of attached to these things. The routine. However horrible the Chemo experience is, you get used to the routine. The people. The support.

I assure her that I will not regress. I will keep the blog going. I may have a bit of trouble adjusting to the new freedom. We will see.

Fo’ad was just as supportive, of course. How does this change life? I don’t know. My curly head of hair may even make a comeback. I see no negatives in any of this. I become so much stronger when I am off Chemo for even a week. This can only be good.

We have lots of plans. We have been invited to all sorts of places. Long trips are out of the question. One day excursions within the vicinity of Toronto can be done. We are going to see Anne and Frank in Pickering, John and Sharon have invited us to their horse farm, Heather and Neil want us to go their farm. Heather reminded me that it is almost a year to the day when we went to their farm to share the news. Their friend Beth was there, also a cancer patient. She had a long conversation with me about what to expect. Strange to think of that now.

Devin is leaving us to go pursue a master degree in Change Management at the New School in New York City. We should be flying down on August 21. Sadness and happiness combined. I am ever so proud of him.

September will see me visit Montreal again to spend some time with Hong Lan. Janet will be attending the film festival in Toronto. My visit to Montreal will take some pressure off her. I have to talk to Hong Lan a bit more about what her remedies are. Stuff that includes acupuncture to increase energy levels. She deluged with so much information that I had trouble absorbing it all. A revisit is a must. To say nothing of spending time with Fetneh, of course. I will try and stay in the same apartment as before, taking advantage of Steve Mykolyn’s generosity. It is good to have a space of your own, specially when you are in my condition.

I lay down when we got home. All this stuff is a bit overwhelming. We had dinner and I returned to bed and made my phone calls.

Yesterday was my very first day of this vacation. I slept for a couple of hours in the afternoon. I also wandered around the house a bit lost. I have so many things to do, so many projects on the go. Where to start? Sleep of course. I am having lunch with Kali today. Looking forward to that. Planning the trip to New York when I get home from that.

Tomorrow is a new day. Taking us back to another sense of normalcy. Can’t wait.

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.

I had a blood test done on May 3rd, in preparation for the Chemo session scheduled for the 4th. I always try and go the previous day. Gives everyone time to get everything ready. They take about an hour to provide the blood analysis, and about two hours to get the drugs ready. Going the day before takes an edge out of the time factor.

I received a phone call letting me know that my white blood cell count was too low for Chemo. It stood at 0.8. Has to be above 1.5. Dr. Hedley instructed me to have another test done on the 4th. Blood cell counts have been known to increase overnight. I went in on Tuesday morning at around 8:00 prior to my 10:00 Chemo session appointment. I showed up at the chemo session precisely at 10:00. No idea how I pulled that off.

The administrative person pulls my file. I explain my predicament to her indicating that if my blood cell count is low, I should go home. She cannot look at my blood results, nor is she willing to show them to me. Only a nurse can look at them. Anyways, there is a red tag on my chart which means Chemo is a go. Getting a nurse to review things did not seem to be an option. In hindsight, I should have put more pressure on her.

I waited about 45 minutes, and decided to get a bite to eat. Got a pager. Confirmed that they were just waiting for the drugs to show up from the pharmacy. I returned at 11:01 which the nurse was kind enough to point out to me. Where had I been. They had paged me at 10:55. The nurse wanted to see me. Not good. The nurse explained that they had made a mistake. My blood count had dropped to 0.7.

Anger.

Wrote a letter to the customer service rep. The letter and responses are below.

I may have a foot in the grave, but the other one is kicking ass.

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Farokh Monajem
sender-time Sent at 12:13 PM (GMT-04:00). Current time there: 11:53 AM. ✆
to patientrelations@uhn.on.ca

I am a patient of your hospital. Needless to say, I have cancer and am receiving chemo treatments.

The positive: your nurses are amazing. They brighten our day. They smile, talk, advise, listen and are generally an admirable group of people.

The negative: The front desk. All of the staff appear to be there to block our access to everything, be it the nurses, or information of any kind. We were waiting at one time for our treatment. After a couple of hours, my wife went to find out why the delay. She was stonewalled. I went to ask the same question, and was chastised by the only male on the desk for asking. We were told that we have to wait and to stop asking. Some customer service.

I went to the blood clinic yesterday. Another fine group of people work there. My blood count was too low to receive treatment. I was told to rest and try again this morning. I made my way to the clinic this morning and had another test done. I showed up at the chemo daycare unit at 10:00, the time of my appointment. I requested specifically to check the blood count to see if I was to receive treatment. I explained that my blood count had been low the previous day. There was a red sticker on my folder, which meant there would be chemo. My while blood cell count yesterday was at .8. I doubted it would jump to 1.5 overnight, though such things have been known to happen.

I went to talk to the front desk again at 10:45. Are we just waiting for the drugs to be readied? I was assured that was indeed the case. All systems are go, just waiting for the pharmacy. I got a pager and went down to Druxy’s. Came back up at 11:01. I know that, because the front desk asked me where I had been, whether I had stayed in the building or not. They had paged me at 10:55, and it was not 11:01. Considering my wait of an hour, they can wait a few minutes. The idea of even mentioning the time element shows a total lack of consideration for our condition.

The nurse wanted to talk to me. A mistake had been made on my file. No chemo today. White blood cell count was still too low at 0.7.

I waited an hour to hear this. I took my drugs, which I did not need to take. I have to pay for parking, $200.00 instead of $4.00. I went to Druxy’s to get a bite to eat, $10.00. All in all, This experience cost me time, frustration, and $41.00 which I could have avoided.

The front desk should have consulted a nurse having heard my concerns. But they don’t. They obstruct. This is very poor customer service.

Farokh

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Dear Farokh Monajem
While we love to hear only good things, it is hearing that negative comments that give us an opportunity to make improvements. I am very , very sorry to hear about this confusion and the poor customer service that you encountered.
I am sending your email to the Ms. Jan Stewart, the Clinical Director for the daycare area so that she can review with the appropriate manager?
May i ask, was this expenditure for medication covered in any way by a third party insurer or was it all out of your pocket?
Sharon Rogers
Director, Patient Relations.

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The drug expense is the price the pharmacy charges you for dispensing the drug. I would rather not have to take the drugs in the first place. I waited for the confirmation that chemo was a go before taking them.

The confusion is acceptable, There was one person at the front desk who is no longer there who was brilliant. Sorry I do not know her name. My appointment for chemo treatment was done for the wrong day (a while ago). The young lady smiled and said, don’t worry, we will look after you. And she did. Defused the whole situation in the blinking of an eye.

The current staff seem to think we are in the way of them doing their job. Very sad.

I apologise if my tone is angry. There seems to be a lot of anger in cancer patients. I am still trying to figure where it all comes from, other than the obvious, you have cancer, duh! I wonder if other chronic patients have the same level of anger in them. Thoughts for another day.

One more thing. I mentioned in my original eMail that parking was $200. Closer to $20. Damn typos.

Thank you for responding. Much appreciated.

Farokh

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you have not lost your sense of humour and that is wonderful.
some thoughts for what it is worth to you in response to the perhaps rhetorical questions ‘where does the anger come from’; from my 20 plus years of experience it comes from : 1. your life , as you had planned it and as it had every reasonable chance of turning out, suddenly took a very bad left turn and you are ticked since all the plans got messed up; 2. it feels as if your body is rebelling against you 3. it is a real pain going through the treatments, the appointments, the waste of time, the waiting time, the people who cause aggravation etc etc. 4. you have a significant condition that reasonably bring fear, anger, hopelessness amongst many other feelings.
So that you kept your sense of humour is wonderful.
that you ‘got rid of some of the anger’ just by writing an email and now are kind enough to just say ‘forget about it’ tells us you have maintained your balance, your sense of reasonableness and kindness.
sounds to me like you are doing really well; a heck of allot better than a lot of people without cancer.
so carry on and may i send you my thanks and compliments !!!! Sharon

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I meant to write you a while ago, but a Chemo session (number 14) got in the way.

You are too kind. I appreciate the analysis about the anger. I have an appointment with Dr. Melnyk to delve a bit deeper into this.

I understand all the reasons. Life is disrupted, and not just mine, but a whole bunch of people who surround me. It is a bit humbling. We have spent our life making plans. Another disruption of them may prove to even be good. There are a number of elements of this condition that are curiously interesting. Disruption of plans means you have to make new ones. Whether they pan or not is immaterial. Keeps you positive, and busy.

I met with my family doctor, my angel. She maintains that part of the anger comes from becoming removed from having the time to think about things. From not being tied down to making that appointment at 2PM and being stuck in traffic trying to get there. On some level, we have deeper thoughts. I am working on it.

I am doing well. Look great as well. Everyone is telling me that. Still perplexed about this whole thing.

Anyway, thanks for getting back to me.

Farokh

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You sound like a wonderful, thoughtful person with lots of family and good
professionals.
and then there are some irritating situations.
I UNDERSTAND: please feel free to write, vent, yell whatever to me whenever
you need/want. it helps a bit.
better with me than with the folks looking after you!
Sharon

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OK, so even the customer service rep at the hospital is super nice. Deep sigh.

Three people from last week did not show up, two new people showed up. Except they are not new since the moderator and one of the participants know them. Hey, how are you, long time. And so on. This is a safe place after all. Five women and me. The ratio is right again.

Today’s challenge: represent your support network. Is it internal? External? Faith based? What does your armour look like? Armour? There is the battle cry again. A subject for a different day at the sessions. No armour here, though others do not appear to have any problems with the concept.

I had a lot of trouble with this one. Kept looking for the inner child to show itself. Damn child stayed well hidden. Probably behind its armour. No, no armour here, and none for the inner child.

I took a lot of notes again. The session started with people talking a bit about themselves and what they are feeling. I was quiet. Not sure if I am ready for that yet. Which, you have to admit is bizarre. Here I am laying myself bare in a very public blog, but have difficulty expressing myself in an atmosphere of trust and safety.

There is a lot of anger. Different people expressing it. Same discussion as last week. Anger at people who do not seem to understand. Anger at the inconsiderate nature of people. Anger at being abandoned by close friends who cannot handle the change.

There is also a certain amount of condescension. A safety blanket of sorts. It manifests itself in subtle ways. An interesting aspect of belonging to a private club. We are invited to go shopping, but we turn it down. We don’t need to go shopping, we are not materialistic. The same sentiments were expressed last week, by a different person. Again, no one objected to the sentiment, or even commented. There appeared to be tacit agreement. Some of us are more empathetic than others. People are mainly concerned about themselves. Life is too short for us to worry about others. Are we being patronizing to those who are unlucky enough to not have been enlightened by having cancer?

One person talked about losing long standing friendships. The relationship has changed. Shopping is of no interest. Life has changed, but the friends are still looking for the old relationship. They do not seem to come to terms with the changes and how they will affect things.

One friend wanted to talk about the view from the other side. It was not to be. I was disappointed. Wondering what that was. I will have to take it up with my friends and see what comes out. It should make for an interesting conversation. This participant did not have the energy to listen to the other side, or the patience, or anything else. She listens to her friends talk about things that are no longer important to her, but are still important to her friends. Frustrating.

How much accommodation should we accord our friends? How much should be accommodated by our friends?

People need to do some self-reflection without it being started by someone else. I am not sure I agree with that one. We all need prompting from something or someone to wake us up. Look at us, the enlightened ones. We are self-reflecting, but only because we have been forced into it. Life would have gone on as before otherwise.

Comparisons were made to the Wizard of Oz. We keep looking externally for confirmation that we have brains, hearts, courage. All are within us, if we were only to look. There are lots of parts in our insides which take a lifetime to know. I think that is way too optimistic.

The Paintings:

She used green in her painting, even though she does not like green. Never wears it. She radiates from the inside out, drawing a cell, or is it an amoeba, or  a jelly fish. She does not know why she drew what she drew. It looks like a vulnerable inside protected by a more hard core exterior. Green representing spring, rebirth, new life. After all the feedback, and there was lots all centered on the protective shell, which still allowed the inside to radiate outwards, the participant said that what it says to her is that “I am here for you”. It begged the question, who is you? Sorry, what she meant to say is, “I am here for me”. That is an interesting thought that goes back to the original discussion we had about it being about you, and how much accommodation should be given and so on.

Water makes a return appearance. In this case it represents the friends and relatives who are there to support you. Surrounding you with calm and serenity. The oyster is her protected by the shell that is open to accept the radiation that is coming from the sun and others. Allowing her to help others and give of herself. The oyster represents purity and happiness.

A connection between the oyster and having to look deep within yourself? The expression that was used, I think was diving deep. Probably the most interesting comment of the day was given by the oyster: Give yourself permission to ask for what you need.

Strength comes from within, while we are still nurturing others. Should we be more careful when communicating with others? Do we risk upsetting the equilibrium of relationships by being too open? This participant seems to think so. She painted her need to look inside for her support. Finds it exhausting to look outside. Energy sucking at ts best when you have to look outside for your strength. She painted herself as the centre radiating inner strength while protected from the outside by a thick wall. An internal light that needs protection from the  outside.

Six circles. She does not want to talk about her painting. Could not get into it.But she is pushed just a bit to tell more. She talks about the colours:

• Blue=loyalty
• Green=being grounded
• Purple=creativity
• Yellow=assertiveness
• Grey=reflectiveness

There was a lot of comment on this painting. Circles leaning into one another, the colours bleeding into each other. A relationship between all the characteristics that are important to her. This has less to do with strength and support, and more to do with expectations of others. The conversation turns to support for the participant. She has done well to express herself. better than she thought. She wanted to draw balloons, but did not feel she a good enough artist to pull that off. As it is, are these asteroids colliding, or flowers?

She has grown up with negative messages, struggling to find her voice. Railing against all the negative messages that are pointed in her direction, She sent an eMail to someone cutting off the relationship . Should we cut people off? At what point? For what reason?

One participant did not wish to participate She drew three pages, participated in the conversations, but nothing abut her paintings. I hope she comes around next week. She may be robing us from an experience.

Where does strength come from. I have written about this before. Inner strength, I feel, is fed from outside support and help. Faith is definitely a big player. As are conversations. this bog which gives me a venue for dealing with thoughts. I guess that means that comments from readers are also very valuable.

My painting represents me at the centre, fed by my Faith (the nine pointed star), and my friends and relatives surrounding me. How great an artist am I! The brown stuff at the bottom is me being grounded. There was a lot of conversation around this. Maybe because I went first. Does my Faith bring people in to support? It should make for an interesting conversation, the role of Faith in one’s life. Whether the Faith in you attracts others,  or others create the Faith in you. Another day.

I said  at the beginning that there is a lot of anger in the room. Not at each other. Another item that came up was the giving nature of some of the people in the room. I asked everyone in the room if they were givers. All saw themselves as being givers, a couple hesitated a bit saying only part of the time.

The book, AntiCancer talks about the C personality. Among other things, it mentions that one of its characteristics is that they are generally givers and not takers. I brought the book in. I had made reference to it the previous week. One of the participants was reading the section, which I had bookmarked, detailing our personalities. Interesting reaction,a s one person disagreed with this entirely. Not believable, she said My cousin Ruja said the same thing when I was first diagnosed. She says it makes us more vulnerable. In a room of six people who have cancer, 6 people are more or less givers.

One person said that people would probably not fess up to being takers. Does this make takers lesser people? No judgments here. I asked a free question, allowing people to answer any way they wished to. There is a negative connotation to being a taker, but really and truly, no judgments here.

I was discussing this with Leslie, who wondered if the giving is hiding those other emotions. Could it be hiding the anger that is already there? Is it masking some other feelings that are just waiting to get out and manifest themselves?

An interesting two hours.

I have spent a lifetime helping others with no expectations. I have not been the centre of attention. In spite of how extroverted I appear to be, I am not comfortable being the centre of attention. I started doing the family laundry at the age of 15. I would help my mother vacuum. Wash the windows every spring. We had storm windows which meant you were washing two sets of windows. That was just the way it was.

My parents held firesides every Wednesday night. Firesides are events held in Baha’i houses where we tell non-Baha’is about the Faith. A lot of people would show up for these evenings. We would end up feeding a lot of the students, providing dinner for about 20 people. Fetneh and I had supporting roles. She would help with the cooking. We would set the table, clear the table, wash the dishes and help get things ready for the coffee/tea that would be served at the end. Mom would inevitably make her patented banana cake covered with fresh cream and more bananas. Yum.

At the end of the evening, I would end up driving a bunch of people home. Mom would insist. It was too cold. For those of you who have not experienced a Montreal winter, I suggest you go there for a vaction anytime n January or February. It will forever change your notions of what cold really is. In the days before Global Warming, we would regularly see winter temperatures of 30 below zero last through the whole winter (at those temperatures, it matters little if it is Farenheit or Celsius). And if it was not cold, it was warm enough to snow, which you had to shovel before it froze as temperatures dipped again. Montreal would average 150 inches of snow a year.

We went to Swaziland when my father died in 1999. We had to pack up his stuff. ShooShoo was there with me. We were going out to see some friends one night. I was dressed in shorts and a Hawaiian shirt. The locals were horrified. You can’t go out like that, they said. I did not recall any African rites that stopped me from wearing either shorts or Hawaaian shirts. No, no, they said, too cold. It will be 10 Celsius tonight. Yeah, OK. Call me when it gets to minus 20. The guy looked at me. I thought maybe I spoke too fast, but no. He looked at me and said he cannot even imagine that sort of cold. True enough. Until you live through a Montreal winter, you have no idea what cold is. Though I am told that Winnipeg might beat Montreal.

My life has been nothing but not being the centre of attention and looking after others. I am no angel, mind. People have called me all sorts of things. I am painfully aware of my shortcomings.

Going from looking after people to being looked after is very hard. No, that’s not strong enough. Excrutiatingly hard. Having to ask Devin for a glass of water because I could not get up to get my own. To watch Leslie clean the house and not be able to help. To not be able to go shopping for food. To have to rely on someone, anyone for the least of things. Not good. And not easy to get accustomed to.I would often escape to the bedroom with the pretense of being tired.

Things have improved though. I am a lot stronger. Getting stronger on a daily basis. Vacuumed the house the other day. Went down to the basement and brought up the vacuum cleaner and did the whole house, returning the cleaner to the basement. I was tired, but it was a good tired, and I was fully prepared to pay the price. I am driving now, which means I can go shopping. I just have to be really careful to not buy too much because the bags become too heavy. Multiple trips are de rigueur. Things are improving.

The guilt that comes from not being able to do things is almost impossible to come to grips with.

The guilt that comes from receiving the love of friends and relatives is an interesting reality. There should be no guilt there. That is what friends are for. To love you in spite of your shortcomings, or maybe because of them. This journey has shown me an amazing amount of love and support form all sorts of friends and relatives, and some very unexpected sources. You cannot help that you are putting people out in some way. Yes, I know. People do not feel put out. They would not come and support me if they did not feel like it. There is little doubt that you feel the love, the unrestrained need to come and visit and talk, if no other reason than to make sure you are OK and not about to disappear down some abyss. I also realise that a lot of that support is directed at Janet and Devin.

The guilt is still there. I will deal with it. Come to terms with it. Acccept it. Dispel it.