Following is a transcript of the eMail exchange I had with the customer service person at the Princess Margaret Hospital. But first, some background.

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.

I am sorry to report right from the start, that I did not take pictures. I am disappointed. The opportunity almost presented itself, but I was not able to explain why I wanted to take them. More on that further down.

The mood in the room was light and very positive. Only three others showed up, which was a bit disappointing. As you may recall, the topic of the day was anger. More specifically, which I did not hear, the animal that best represents our anger. I love animals, and do not have one that I can single out for this privilege. That particular part of the instructions had not registered. My painting does not have an animal in it, unless you consider the face that of an animal.

We started with the usual round the table is everything OK discussion. I decided to speak first. Big step for me. Surprisingly easy to do. There was more discussion this time about the types of cancer that we have. Or had. Or are dancing with. Or living with.  I mentioned that I had colon cancer. One of the participants urged me to use a different set of words to describe what I have,m since language has a huge impact on how we feel. Saying that I “have” cancer, has a negative impact on me. I do not recall what language she suggested. It sounded far more passive. It makes sense on some level. But I do have colon cancer, as the oncologist appointment confirmed. I felt that I am saying I have cancer until the doctors tel me I do not. It does not depress me, or change my mood. It is a fact. I pointed out that when the cancer has spread as far as this one has, you have cancer. That is all there is to it.

The moderator had to reign in the discussion several times. We were almost out of control. We had to get to the subject matter and start our art and stop talking, even though it was interesting and helpful. One participant talked about an issue she is having with a friend (relative?), the mention of whose name upsets her. How do you handle these situations? Not enough time for a full discussion, though the topic did return under a different guise. I will keep you in suspense for a while.

One person went to the gym for the first time in a year. Muscles ached that should not be aching. Happy aches. She has started to put on weight and felt strong enough to face the gym. She was athletic before and the return is a huge step forward. Someone else talked about putting on weight. We are all putting on weight which is a good thing, to a point. I wonder if we are eating our way out of this?

A very brief discussion took place over the tole of friends and relatives. This is a recurring theme. I find it interesting. On one hand no pressure should be put on others. They don’t understand, do they. On the other, how dare they abandon us? Takes too much energy to deal with the externals. Why have they stopped calling? Someone said it is almost as if they are doing crisis management for the first couple of weeks, then return to their lives. Surely that is normal and to be expected. I did not say much. I have the great bounty of a huge number of friends and relative who keep pestering me. Bring it on.

No one seemed to anxious to start painting. Everyone said they have no anger. Either dealt with it. Never had it. Gone. In the past. Move on. One person had spoken me about her issues before the session started. She suffers from an anxiety disorder. She described the symptoms to me. I have a good friend who has the same issue/condition. I am well versed in it. The participant mentioned that cancer is a walk in the park compared to the the anxiety thing.

I will start with her painting. It is funny how we paint things, the interpretation of which takes us by surprise. She painted a stick figure of herself. Eyes, top of head, arms and legs. Just enough to give it shape and proportions. Around it were red strokes, akin to flames in orange and red. To one side was a series of blue strokes, and to the other green. Almost symmetrical. The red flames encroached severely on the person in the middle. The blue and gree were a bit farther out.  This is an anxiety attack, where the heart palpitations start, and the person feels engulfed by flames. The blue is a coll breeze that should help calm the person down, and the green represents more calmness.  The attacks occur most often in enclosed spaces, elevators, the subway, specially if it stops in a tunnel and the doors remain closed. No air, no breathing, flames run rampant.

Someone asked why there was no mouth. I asked why the question? What is the significance to the mouth not being there? The painter did not have an answer. The person posing the question suggested that the lack of a mouth would suggest that she cannot talk to express herself. By which token, the lack of ears means she cannot hear, and nose she cannot breathe.  Much to my surprise, the painter agreed that during the attacks, she cannot breathe, or talk, or hear anything. Her heart starts palpitating, she gets very hot, heart races, then everything stops. The moderator asked her how her painting made her feel. She responded that her anxiety levels were increasing the more she looked at it. Would she feel better if she covered the red with blue paint. Yes she would.

I so wanted to take a picture of the before and after. This was so powerful and evoked such emotions. The moderator stopped me, quite brusquely. He was right of course. What a missed opportunity. I did not have time to explain why I wanted to take the picture. It represented such a momentous occasion for the participant. I really did not care if it did appeared in the blog. That was secondary. It was capturing the moment. The release in her as she covered the red with blue was palpable. We suggested to her that maybe visualising painting a situation blue would help ease the attacks. Amateur psychiatrists, one and all.

I was very upset at the missed opportunity. Janet pointed out the irony of the situation. Getting upset at a situation in an session dealing with anger.

Another participant painted the logo from the Florida Panthers. A brown panther (I have to talk to her about the colours) surrounded by yellow, black and red, nails in red and yellow, mouth in red, teeth exposed, claws raised. As angry a beast as one could ever wish for. She maintained that her anger is behind her. She is reconciled, content and moving on. She drew the panther because that was the assignment. What gets her really angry is the lack of civility in the world. No thank-you’s, and pleases. People butting in front of you without so much as a if-you-please. Aggressive drivers, people cutting people off, rude, inconsiderate, lowering our standards to the lowest common denominator. That is what really makes her angry. She got quite animated during this description. In all fairness, she is quite animated to begin with, but there was a glimmer of more. The panther was described as a protector, a beast that would defend her against the butting-inners, the callous nature of beings. She liked that image. Grrrr.

It occurred to me later as I mulled this conversation over and over in my head, that the anger is misplaced. That may be the wrong term. We don’t get angry at people butting in, or not saying thank-you, or sorry. We get upset. We are disappointed. We shake our heads. Angry? Doubt it. Is it possible that she is still angry but is repressing it? She reads this blog. I am not saying anything to offend her, but rather to further the discussion. As I have said many times, no judgments. Is the anger still inside somewhere, waiting to be acknowledged? An active sportsperson who is suddenly afflicted. Not sure how I would react in her shoes. I am not a terribly physically active person. Walking is the extent of my exercise. I would think anger would play a part. She says she is past it, and we have to take her at her word. Anger is showing up in her in places that, logically, should not be manifesting itself.

The third participant drew a dragon breathing fire. She exclaimed that her dragon does not look angry or fierce, since dragons always breathe fire. No idea why she drew this. She grew up in a house filled with anger which seemed to stop more positive elements from taking place. Makes sense. Nothing worse than rampant anger. The most curious statement she made that was not picked up on by anybody was that emotions do not have a place in an ordered society since they tend to derail things. Ordered society? This requires a definition, to say nothing of the premise itself. Maybe next week.

Her dragon was on the right side of the page facing left. It was suggested that this represents the past, and that indeed, she had put her anger behind her and was moving forward. A middle placed dragon would have represented the present, and a right looking one the future. The flying dragon may also represent the long journey home. The discussion around her painting came back to the one I mentioned at the very beginning of this post.

Letting go. It is so important to let go of things, be they negative emotions, anger toward people or events, or whatever. Peace and tranquility are a must for the cancer body. Is letting go an active or passive act? What are the steps required to get there? Acceptance and acknowledgment? Forgiveness? Forgetting? She can forgive, but not forget. I maintain that letting go is a passive act. It is accomplished after all the steps leading to it are complete. The steps are active, but the act of letting go is passive. I may have been in a minority. We talked about her capacity to let go, returning to her friend/family person whose mere mention upsets her so. Letting go of feelings of resentment toward those who she feels turned their back on her during this struggle.

Can you forgive and forget? Can you forgive without forgetting? Should you forget? Do you have to keep a vestige of the memory for future reference so the slight does not happen again. A bit like remembering history so it does not repeat itself. And we know how good we have been at that. Can you forget and still learn from past experiences? We tend to insist on remembering the bad as a point of reference, but often overlook the good. We learn from our past mistakes. Surely also from the non-mistakes.

We are constantly told to deal, forgive, forget and move on. Specially when the memory is a bad one. Seems like a natural. At the risk of offending a whole bunch of people, including some very dear relatives, we have remembered the events of the Holocaust for over 60 years. There is no denying the horrendous activities that took place, the numbers of people who have been affected, the incredible cruelty inflicted on so many people. The point of remembering the Holocaust is not the numbers of people who were killed, 6 million Jews. Over 25 million died in the war dwarfing that figure. It is surely the systemic attempt to annihilate a people, a culture.  We remember in spite of the deniers. We see pictures. Germany recently released the Holocaust files which are being or have been digitized allowing descendants to find out what happened to their ancestors. We remember.

To what end. Humanity has repeated similar actions again and again. Rwanda. Sudan. Serbia/Croatia. Congo. Uganda. Kenya. To name a few. The memory of the Holocaust has not stopped these ravages from taking place. I doubt  someone is sitting there saying, oh yeah, cannot annihilate those people, remember the Holocaust. And yet, we insist on remembering. The only country that has been truly affected by the memory are the Germans, who are still paying a price in spite of the reparations they have done. Should we not forget and let go the past? Let Germany and Germans off the hook?

My Painting:

Anger

Anger

The spoon is filled with anger being fed to the person. The cancer cells grow and multiply turning red as they grow larger. Not good. We had run out of time by the time the discussion turned to my painting.

We talked a bit about how we react to things. You always have a choice to not get angry. This does not mean you repress it. You just do not get angry. Anger escalates. My brother told me a story during his last visit. He was driving somewhere when he decided to take a break and exited at one of those roadside gas stations. He went to the washroom when this young man stormed in and started swearing at him. When asked what was wrong he exclaimed that my brother had cut him off on the highway a while back.  He threatened to beat up my brother.  Talk about road rage. My brother looked at him and said he sees one of two results from this. Either the young can go around bragging that he beat up a man over 60 years old, or he will have to explain to others how an over 60 year old man beat him up. The man calmed down somewhat and started talking to my brother about his problems. What often triggers an emotion is not the root cause of it.

I used to work with this wonderful lady who was in charge of customer service. I was amazed by her poise on the phone. Nothing rankled her. She was always calm. Until she put the customer on hold. She would bang the phone down, let go a litany of swear words. She would research the subject, and pick up the phone calm as ever to deal with the customer. She has not changed. She still deals with events in the same way. Mesmerizing.

Anger is a basic human emotions. Men and women handle it totally differently. We shy away from it. Frown on it. Write about it. What else can we do?

We had Art Therapy today. Must be Wednesday.

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:

Healthy Cell

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.

Oyster

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 from Within

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.

6 Circles

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.

Faith, Friends and Internal

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.

© 2010 I Have Cancer Suffusion theme by Sayontan Sinha