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 going through a bizarre set of events. I keep thinking and thinking and the thoughts provoke new thoughts, and I reverse my position don’t care about this or that, come to new conclusions, confuse myself to all high hell. What else do I have to do?

It turns out that I have a lot of options.

I went for my Chemo session last Tuesday. That is Tuesday the 11th of May. My blood count was. The admin staff were helpful. Quite a change from the previous week. More on that in a separate post coming today. The nurse let me know that this was my 14th session. I am a walking talking Chemo boy. The drugs came, and I was topped up. Got the Neulasta shot on Thursday. I slept for a week. My energy levels returned yesterday. I am all excited about New York where I will be tomorrow at this time. Things are good.

We were at the Fraser’s farm a couple of weekends ago. I designed a couple of new camera bags. I have to render them, sew up a couple of examples. Yes, I can sew. Learned from my mother. Then attempt to find a manufacturer, put together a business and marketing plan. The usual routine. The market is short of good practical camera bags.

I have also decided to start designing web pages for small business. Nothing fancy, no flash or anything complicated. Simple four to five pages of static stuff. I will also offer to maintain the site, update the software, make sure it is running, do the marketing for it and so on. I have revamped my photo site at farokh.ca. I will be creating a template of sorts in the next week or so. Then start calling or sending eMails out to some prospects that I already know might find this useful. I can do this from home, and be totally online, and at my own pace.

My friend Steve Mykolyn suggested the other day, that I start writing camera and related equipment reviews. I have thought about that. I am coming up with a template for that as well. I will probably focus on the every day user who is pondering buying a point and shoot camera, or an upgrade. None of the professional stuff. Professional, or semi-pros such as myself are pretty well versed. There are sites that pander to us. No one seems to be looking after the casual user in a meaningful and fun way.

We are re-doing our garden this year. Thinking of building a new pond, a shed, plant some new local plants. We hired a gardener to help out. I do not have the sustained energy to carry out the changes.

Busy? Just a bit. It occurred to me the other day that I am trying to find myself – again. I have no idea which of these projects will come to fruition. Maybe they all will. Maybe only one of them. It is becoming an interesting exercise. I am concentrating on the web design first. Once the template is set up and the eMails are sent, there is little left to do, except maybe a bit of marketing. Might even be fun.

I was told at the beginning of this adventure that I have some time to live, anywhere from tomorrow to five to ten years. Or more. Or whatever. I told Fetneh the other day, that I have to modify the numbers a bit. I had my operation about 9 months ago. I now have between four and nine years to live. I can be so funny. Five to ten sounds like so much more time. I could go one for the next five to ten telling people I have between five and ten. No one would be the wiser.

You go through life expecting to die of ripe old age. No one really expects to die sooner. No one is out there saying things like, Oh yeah, I expect to be fall out of a building by the time I am fifty. Cancer hits. The doctors do not like to give you a time frame when you would expect to die. Bad vibes there. The problem that appeared this week in my ever so feeble brain is that you now expect to die earlier, but when exactly? Not that you knew before. Expectations are now set for an early passing on. But when? This is getting stupid.

I went to the hospital yesterday, home away from home. It is amazing how quickly you adjust to your new surroundings. I went to spend a bit of time with a friend who was doing blood work and meeting with the palliative care people. She does not have much time left. She gave her blood to the vampires, and we went for lunch. Her husband was there. He keeps calling me the other man. The goal is to just talk, laugh, eat. We are going out for Ethiopian food when we come back from N.Y. I am going to cook Persian rice for her one evening. We do what we have to do.

I also ran into my lady with no nose. The cancer has spread a bit. She is due for more surgery on her cheekbones. We talked a bit. She was on the verge of tears. Don’t know what to say.

I look amazing. Everyone is saying that, so it must be true. My hair is growing, albeit (great word that!) slowly. I have apparently developed immunity to hair loss. Which is a good thing. I just read today that losing the hair in your ears results in losing your hearing. I am saved, I tell you, saved.

I am seeing my psychiatrist in June. A good talk is to be had. So much stuff to discuss. So many thoughts, so much stupidity, confusion. It will all pan out.

Thanks for listening. Thanks for being there.

As you may or may not know by now, we spent a weekend at the Fraser farm in Caledon, about an hour north of Toronto. They were not there. They gave us the key to the house. We have been there many times and are not strangers to the house.

This is not your typical farm, more of a gentleman’s farm. Nice large property, some of which has been leased to a local farmer who is raising cows. The house is spectacular, decorated with great taste. It is divided in two sections, the old original farmhouse, and the new addition that was there before the Frasers took over. The brickwork between the two section almost match. The new ones being, well, new, while the old show the ravages of time.

We have always stayed in the new section, in what is ostensibly the TV room. This is very practical, specially now, because we have our very own bathroom, a must for my condition.

I was incredibly tired for the whole weekend. Janet surmised that my white blood cell count was probably low. We had our last chemo session just 10 days after the previous one. We moved up the date of the sessions by a couple of days. I do not know why I ever doubt her judgment.  I did not think two days would make that much of a difference.

I pushed myself as I always appear to be doing. We went into Orangeville, which is a strange town, even for a country setting. A mixture of good and atrocious. Their main street is called Broadway, and it is that. Very broad. They have built a median in the middle that effectively separates one side from the other. The only places to cross is at intersections. They really should get rid of the median and let the two sides communicate. There are all kinds of possibilities there. All that is required is a little bit of vision.

We walked around town a bit. Found a delightful store selling household decorations, and jewelery and other stuff. A real mish-mash as you usually find in the country.  We were looking around and purchased a couple of items. I was flirting with the very young sales ladies. What else am I supposed to do while Janet is shopping?  I usually take pictures, but these girls flirted back.

One of them asked where we are from, and more specifically where in Toronto. Oh my, says one, I teach at the Riverdale Pilates once in a while. Good friends with one of the trainers there. Turns out the trainer is Janet’s personal trainer. Small world.

We went into town several times for groceries, or to just look around a bit more. I drove around looking for picture taking opportunities. None to be had. I also dove around the Fraser’s neighbourhood to see what there was. Lots of pictures there. Also took pictures of their barn which is going to be repaired before it collapses. Can’t have that, the cows live in the basement. You will see some of the pictures once I have looked at them a couple of thousand times.

We rested a lot. Talked, they cooked, I ate, talked some more. Watched a bit of TV, slept a lot. I am waking up really early these days, around 6:30. Not sure why, don’t really care. I can always sleep later. I wrote a couple of poems, the first of which I put on the blog. Designed a camera bag that I hope to produce. Going out this week to buy a sewing machine. Yes, I know how to use one. Watched my mother over so many years.

The weather was almost perfect. Hot in the day, specially in the sun, cool at nights. Stormy on our last day there. It was good.

My exhaustion was tiring to say the least. I was looking forward to walking a lot more. They have a large pond on the property. Always a good walk around. But not this time.

No weekend would be complete without an accident with the bag. I emptied it at around 3:00AM. Fell back asleep around 6. Woke up with start at 8:00 when my hand drifted into something gooey and wet and stinky. The bag had filled to capacity and burst at he seams. Stuff everywhere. Could not be controlled. All over the floor. All the way to the washroom where I started cleaning up while Janet cleaned up the sheets and floor and everything else. Embarrassing to have her do that. I know, that is what marriage is all about. Still, it is a messy proposition.

I tried to not let that ruin the weekend, difficult as it is. It just helps remind me of the fragility of the situation.

Overall, a good weekend. A good dry run for our trip to New York on the 20th.

Thank you for visiting, reading and commenting.
Have you had cancer? Not that I would wish this on anybody.
Cancer creates a journey of discovery. About yourself, and others.  About life, about your body, and just about anything else you would care to imagine.
The thoughts you have put forward are heard every day by every cancer patient. They are unfortunately, far from the truth.
Cancer will not have a cure until we can tell where it is coming from. We really have little knowledge of its source and its trajectory. Is it caused by stress? Or is stress just a factor amongst many that provoke it?  From what I have read, there are a number of things that help activate cancer, and yet none are decisive. If stress were the activator, just about everybody in the Western world would have cancer by now.
Research on cervical cancer has revealed that it is a virus that helps the cancer invade the body. A virus that the person gets when they are in their teens. Having the virus does not mean you will get cancer, but not having it means you will not.

Thank you for visiting, reading and commenting.

Have you had cancer? Not that I would wish this on anybody.

Cancer creates a journey of discovery. About yourself, and others.  About life, about your body, and just about anything else you would care to imagine.

The thoughts you have put forward are heard every day by every cancer patient. They are unfortunately, far from the truth.

Cancer will not have a cure until we can tell where it is coming from. We really have little knowledge of its source and its trajectory. Is it caused by stress? Or is stress just a factor amongst many that provoke it?  From what I have read, there are a number of things that help activate cancer, and yet none are decisive. If stress were the activator, just about everybody in the Western world would have cancer by now.

Research on cervical cancer has revealed that it is a virus that helps the cancer invade the body. A virus that the person gets when they are in their teens. Having the virus does not mean you will get cancer, but not having it means you will not.  Current research in breast cancer appears to reveal a similar situation, it is too early to tell.  Could it be that the blood poisoning I got in Africa when I was 8 is contributing to my cancer? Could be. Or not. We just do not know enough.

My grandfather had stomach cancer. My mother lung cancer, and I am blessed with colon cancer and its complications. My mother had two brothers and a sister, none of whom got cancer. I have a brother and two sisters, none of whom have cancer. Why pick my mother? Why me? I am not being negative. But the question remains. Why would the cancer skip some and target others. There are no answers to these questions. It is just the way it it.

As far as I can tell, cancer cells live in your body, whether you have cancer or not. Something (s) triggers its awakening. It rampages through your body and does whatever damage it can until it is stopped. Can we stop it by mere imagination? By Faith? By believing? I do not think so. I am a very religious person. Not for a second do I believe that this some sort of punishment from God, some sort of retribution. If that were the case, all prisoners would be afflicted with cancer. I am also a very positive person in my outlook of life. By some reckoning, too positive. I do not lack the imagination to make things go away.

Cancer appears to be the only condition to evoke the emotions you have expressed.  Other chronic conditions seem to slide under the radar. I wonder if it is because there is so much cancer in the world. In every country, and it is so debilitating. There are stories of victory, of sorts. People who get back to work in four months. But the other stories, the ones of people dying, being debilitated, are far more pervasive. We just do not want to hear about them. A lot of cancer patients retreat from their community. In some cultures, shame is poured on the patient, as if it was their fault.

Cancer is also not curable because there are so many different kinds of cancer, each with its own challenges. I was taken off pain  killers only seven days after my operation. Am I that strong? Another cancerous friend was taken off pills in only 4 days. She is obviously stronger than I.  The nurses and doctors did not have answers. Our bodies are different, our reactions different, our tolerances different. We just do not know enough. What we do know, is to tell the patient that we do not know. Some cancers respond better better to treatments than others.

I tell all who listen, that I would be a healthy man if it were not for the caner.  I was walking around the bedroom this morning. Looked in the mirror, and there is this bag hanging from my waist. An unmistakable reminder of what I and so many supporting friends and relatives are going through.

There is no shortage of love, affections, thoughts and prayers in my life. I have a truly bountiful existence supported by far more people than I ever thought was possible. All helps, but none will cure, however much I or others believe. I believe I can fly and leap off a building, only to plunge to my death. Belief is wonderful and carries you only so far.

Change my life? In what way? Easy to say, easy to think it is possible. But in what direction? Everything we do has ramifications that appear to be greater than anything we could have possibly imagined. Who is to say which direction is right or wrong. I know of people with cancer who did not change a thing. Their cancer went into remission. Others changed and did not survive.  We just do not know enough.

My life has changed dramatically already. In ways I could never have foretold. What more?

Baha’is believe that science and religion are equals. Neither reigns supreme over the other. They are equated with being the wings of a dove, balanced and equal allowing the bird to fly. I had my Chemo session last Thursday. Apart from brief excursions, I have been in bed since exhausted from the experience. I should be alright by tomorrow morning. I will lunch with a friend on Wednesday, and Thursday, and Friday. All friends helping, doing their part.

My oncologist believes in wellness. He pointed out that he can only do so much. Up to me to do the rest. I should say, up to us. I could never do it on my own. I repeat that it is the support of friends and relatives that keep things moving along. I agree with my oncologist. I try to stay as positive as is possible. I try and stay active. I try.

I am ranting a lot. I am afraid that is just the way it is.

© 2010 I Have Cancer Suffusion theme by Sayontan Sinha