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This is part of the full text of the medical memoir "Cancer Patient" written by Hugh Cook. The full text has been published online on a free-to-read-online basis. This autobiographical non-fiction account deals with the author's initial health problems, diagnosis, and treatment with chemotherapy and radiation therapy.

The complete text of "Cancer Patient" is here on this web site but is also available for purchase from amazon.com as a proper printed paperback book. The full text may also be purchased as a download (a PDF file) from lulu.com for US $5. Go to lulu.com/hughcook

For a chapter-by-chapter breakdown of what's in the book (in its online version, in the PDF version and in the paperback version), see:-

Table of Contents

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CANCER PATIENT is a medical memoir which deals with the author's autobiographical experiences which involve, amongst other things, chemotherapy, radiation therapy, a brain biopsy, a lumbar puncture (and then some more lumbar punctures), treatment with Ara-C, treatment with vincristine, treatment with methotrexate, treatment with radiation from a linear accelerator, and a vitrectomy (an operation to remove the jelly from an eye). This is a non-fiction account but it does contain a couple of fictional stories, clearly identified as such, and it also includes some poetry.

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Chapter Sixty-One

Advice for Cancer Patients

Advice for cancer patients: advice on obtaining, organizing and managing information about cancer. Tips for using the Internet, talking with your doctor and organizing your medications. Take control of your life.

Summary


        And what a long strange trip it's been! What a saga! And what did I learn along the way? Well, in a practical sense, what I was doing a lot of the time was processing information, and I have a few practical hints which, I hope, may help someone, somewhere, with the tricky task of managing the information load that accompanies a diagnosis of cancer. Managing information is not the easiest thing to do when reality has fractured and a world of strangeness is pouring in through the cracks. Here, then, some practical hints for cancer patients, all focused on the topic of information management. Looking for advice? This is, really, the one and only chapter of the book which ventures to give any.

Advice for Cancer Patients


        There's no perfect way to manage the information flow. It's too much information given too quickly, and there's really no way to alter that. This train wreck is happening at its own pace, and you can choose to be informed or not. But you cannot alter the dynamic of the train wreck.
        I'd like to think that the entirety of this "Cancer Patient" text would be of interest to the general public, particularly bits like, for instance, baby Cornucopia's Advanced Banana Ingestion Technique. But, realistically, if you were looking for practical help, then you could throw away the rest of the book and just read this chapter.
        I'm driven to write this chapter by the sense that I did learn something about information management. What I learnt chiefly involved remembering things I'd already learnt before and honing known techniques. In retrospect, I can see where I made errors on the information front, where I could have done better.
        With the hope of being useful in mind, I have thought long and carefully about the subject of advice, and, as has been indicated above, finally, I have decided to give advice by focusing in on the subject of information management, something which I, as a teacher by profession, have at least a little expertise in, quite apart from my cancer patient escapades.
        Everyone's individual experience tends to result in a series of unique moments which will probably not replicate the experience of others. In my own case, for example, part of the background of the experience was the fact that my own Auntie Joyce died, tragically, of non-Hodgkin's lymphoma, the very same disease which struck me down.
        According to the textbooks, this disease is not regarded as being hereditary, but my own experience was that of following in my aunt's footsteps, and part of the experience of having cancer was, for me, the business of processing my aunt's death, which, I realized, was in some ways a piece of unfinished business, a family trauma still in the process of working itself out many years after the funeral. My own cancer was not my own isolated story but, rather, was tied very directly to a major family tragedy. My aunt died, therefore, at the outset, it was entirely natural for me to think that I was going to die too.
        But that specific family background is not very likely to replicate anyone else's experience, at least not in the case of non-Hodgkin's lymphoma, which, as already noted, is not seen as a hereditary disease.
        As I conclude, then, by offering some advice for anyone who finds themselves suddenly thrust into the cancer patient's role, I am focusing on the most general thing I can think of, the management of information. In writing about this, I am writing as the professional English teacher as much as the amateur cancer patient.
        (Being a cancer patient is not a profession. That's one of the things that bugged me at various times during my experience. I was conscious of gaining increasing expertise in a number of areas, everything from adjusting the position of my hospital bed to putting in eyedrops, but I was aware that there is no market for these skills. So you're a dab hand at putting in eye drops? So what? It's going to count as zero when it comes to getting a new job.)
        My own cancer directly affected the brain, so it's reasonable to assume that my mental faculties were impaired while I was grappling with the disease. In particular, it's entirely possible that my short-term memory took a hit. However, even without this kind of problem, information overload is an obvious danger when large amounts of information are being presented in stressful situations to someone who may be anxious, tired, busy with distracting thoughts and, possibly, under the influence of some kind of medication.
        My own advice on managing the information problem is as follows. In offering this series of tips, I've tried to arrange them in order of priority, with the most important at the top and the least important at the bottom.
        I've boiled down this set of tips to just eight.
        1. Keep all the information in one place. For example, a notebook. (Don't lose the notebook!) If you come away from a medical consultation with half a dozen different bits of paper (appointments, lists of drug side effects, advice for eating and drinking and so forth) then transcribe the key points into the notebook. Time spent this way is not time wasted. Working with the information (transcribing it, paraphrasing it, discussing it, rereading it) is a way to internalize the information.
        It would be a good idea to have, written down in the notebook, a list of all your medications and the times at which they are supposed to be taken.
        While I believe it is a good idea to have all the information in one place, the drug-taking information could, reasonably, be duplicated in a second place. Assuming you have gone and bought yourself a plastic lunch box or something similar in which you can keep all your medicines (and remember that medicines must be kept where children cannot get at them!), then it would be reasonable to put a piece of cardboard in the top of the lunch box, and, on that piece of cardboard, to write down all the medicines and the times at which they should be taken, leaving gaps between the medicines so new medicines can be added as the number of things you are taking increases (which may be what tends to happen).
        This is something I actually did on the advice of my sister, and it helped me keep track of what I should be taking when.
        The second place where such drug-taking information could reasonably be duplicated is on a list to be stuck to the refrigerator door so other people can keep track of what you are supposed to be taking when. This can obviously help if your ability to keep track of things yourself is compromised.
        This was one thing I was advised to do since there was the possibility that my mental functioning might deteriorate significantly during treatment. In point of fact I didn't do it, but the idea still sounds good. Depending, of course, on the dynamics of the relationship between the patient and the people in the patient's household circle.
        2. Review information. This is one thing I singularly failed to do. I took lots of notes but failed to review them so forgot what I had forgotten. There were moments when I thought myself perfectly informed but had, in fact, forgotten vital pieces of information.
        As a teacher, when I'm teaching English to foreign students, I recommend that new information be consolidated using the following review schedule: tomorrow, the day after tomorrow, a week from today, two weeks from today and a month from today.
        The exact timings are really not important. The key thing is to get a revision cycle going. The brain is designed to forget things rather than to remember them because most of the information we encounter (such as, for example, the precise taste of the cornflakes that I ate this morning) is junk data, useless.
        If you're having trouble getting to grips with information by way of a review cycle, and need extra memory work, then one possible exercise is to take a pad of blank paper, write down (from memory) what you think are the key points in your notebook, then compare this output with the points which are in fact covered in the notebook.
        3. Take someone else to a medical consultation if at all possible. In the New Zealand hospital system, I was able to bring along whoever I wanted, and there were occasions on which I had three or four people in the room with me and the doctor. The people who attended medical consultations with me at one time or another were my mother, my father, my sister, my brother-in-law and my wife.
        In terms of information processing, there are two main benefits to be gained from bringing an observer to a medical consultation.
        The first benefit is that the observer ends up being informed. If my mother, father, sister and wife came along to a consultation, then I wouldn't afterwards be put to the labor of informing them (or possibly misinforming them).
        The second benefit is that it is possible to sit down with the observer and review what happened at the medical consultation. You can give your concept of what happened and get a "Yes" or a "No" or a "Sort of" or a "Yes, but you must also remember ..."
        4. If possible, review any medical consultation with an observer who was there.
        In the early stages, shortly after my diagnosis, I went through this review process with my sister in quite an elaborate way. I took notes at the medical consultation, my sister also took notes, and then a couple of days later we met at a coffee bar to (in theory) compare notes. In practice, we both forgot to bring out notes to the coffee bar, so we compared memories instead of notes, but the theory is the same.
        5. Check your understanding of what you've been told at the medical consultation itself. Paraphrase what it is you think you've been told.
        Starting lines to initiate this process might be:-
        "So, doctor, could I just take a couple of moments to go over what I think the key points are?"
        "So, are you telling me that ..."
        "So, at this point, my understanding is that ..."
        "So, if I've taken in what I've been told, the most important points are that ..."
        6. Prepare for a medical consultation by making a list of questions. What facts do you need to know? Surfacing your questions is part of your duty as a patient. You need to aggressively push for the information you need.
        Starting line:-
        "May I just run through a few questions that I've written down?"
        This hint is fairly well down my lists of tips because it relies on prediction, and it's not always possible for the patient to predict, in advance, what key points are going to be covered by a medical consultation.
        In preparation for my first consultation with the oncology doctors at Auckland Hospital, I made a long list of written questions. At the consultation I methodically asked each and every one of these questions and wrote down the answers that I got. Since one hundred percent of my questions had been answered to my satisfaction, I left the consultation believing that I was one hundred percent informed.
        In fact, however, the doctors had told me important things which slipped past my notice. I either missed the fact that these things were being said or else made notes but subsequently forgot, because I failed to review the notes. Either way, I messed up. In particular, at one point I missed the fact that I was being told that dexamethasone, a drug which was very important for my health, might cause nausea, and that I should contact a doctor if this happened.
        For the patient to script the medical consultation, then, is potentially hazardous.
        By all means make a list of questions and by all means persist in asking these questions, and by all means follow through with secondary questions until issues have been explained to your satisfaction. But don't let this asking business derail the listening business.
        This is why the "list of questions" tip is quite a way down in this list of hints. First listen. Prioritize listening. Then ask.
        7. By all means do online research. There are some good online resources available. To give just one example, one web site which was active as of 2005 was www.cancernausea.com, a site which addresses the issue of cancer and nausea.
        However, during medical consultations, do take the opportunity to check what you think you've learnt.
        Possible opening lines:-
        "Someone told me ..."
        "I've been told ..."
        "I may have gone and misinformed myself, but from what I've read it's my understanding that ..."
        The information that you have found online may be wrong or just outdated.
        When I was using my computer to research the subject of cataracts, I found a source of information which explicitly stated that a "senile cataract" (the ordinary kind of cataract) cannot be surgically removed until it is fully grown and "ripe" or "mature". Consequently, I was a little surprised when, in July of 2005, my eye surgeon proposed removing a cataract that was growing on my right eye, and which was then in its early stages, but which was apparently growing rather fast, and could possibly be causing me severe difficulties in as little as six months.
        Obviously when you're face-to-face with one of the world's best eye surgeons, his judgment is more to be trusted than something you happen to have found by scavenging through data bases with your computer. Nevertheless, if a medical service provider is telling you something which runs contrary to what you've been led to believe is true, it's legitimate to ask a question.
        I have, when the occasion calls for it, resources of diplomacy and humility, and I approached the subject like this:-
        "I have a question. I may have gone and misinformed myself, but I believe I read somewhere that a cataract can't be removed in its early stages - it has to be mature."
        The eye surgeon immediately told me, no, no, that's an old-fashioned concept relating to an old-fashioned method of surgery. These days, a lens which is suffering from a cataract can be removed at any stage of the growth of the cataract.
        Having misinformed myself by using my computer as an educational toy, I was able to ask an ignorant question and got a prompt, courteous and informative response.
        Online research worked well for me in Japan when my Japanese ophthalmologist, Dr. Lux, agreed to make the experiment of injecting steroids into some tissues adjacent to the eyeball. I had researched this procedure as best I could on the Internet, and, at the informed consent stage, I started out like this:-
        "Could I give my understanding of the risks of this operation? If I understand correctly, the risks are ..."
        And I followed with a summary of what I'd learnt, which was a very quick and efficient way of getting through the subject. Dr. Lux then came back to me:-
        "Yes, that's what we generally tell our patients. But there's one other risk, which is the risk of infection, which is small but real."
        And she then gave me advice on what to do if my eye became infected (basically, come in to the hospital, really soon, to the twenty-four hour emergency department if everything else was closed).
        I would not counsel anyone to give unqualified trust to online resources. Why not? Because there's no quality control mechanism ensuring the integrity of the data. But online research may form the basis for questions to ask your medical service provider.
        Some simple general-purpose openings:-
        "Is it true that ...?"
        "Am I right in thinking that ...?"
        "Do I understand correctly when I think that ...?"
        "I'd like to run an idea past you, if I may. I heard somewhere that ..."
        Or, if you're face-to-face with one of the world's leading practitioners of the medical arts, and feel the occasion definitely calls for a modicum of humility, you could try the approach I used, as outlined above:-
        "I may have gone and misinformed myself, but from what I've read it's my understanding that ..."
        8. Don't be silent. If there's something wrong then sing out. It's reasonable to think of this as being one of your duties as a patient. Regardless of how thoroughly you are being invigilated, the amount that your care givers can know about you is limited, and you're doing everyone a favor if you volunteer information about anything that's going wrong.
        I messed up on this front at least twice.
        The first occasion was when the dexamethasone that I was taking caused me to throw up and I said nothing. I'd internalized the idea that "You have cancer therefore you're going to be doing a lot of vomiting" but this idea was actually wrong. Once my stomach problems were out in the open, I got prescribed an antacid and an anti-nausea pill and my problem was fixed.
        The second problem - and here I repeatedly messed up - concerned constipation. Every time I was admitted to hospital for chemotherapy I became constipated. Because I didn't want to share information about my bowels with anyone else, I was left to grapple with this problem in silence and ignorance.
        In my ignorance, in the privacy of my own mind I unfairly accused the hospital food of being responsible, and attempted to address the problem by bringing fruit to hospital and eating it in quantity. The fruit strategy was partially successful, but only partially.
        Only later did I learn that one of the anti-nausea drugs which I'd been routinely prescribed while hospitalized for chemotherapy has a tendency to cause constipation. If I'd spoken up and had confessed my problem during my first or second chemotherapy cycle, then I would undoubtedly have discovered this information much sooner, and a laxative would have fixed my problem.
        In terms of speaking up, one thing I did do well was to clearly signal to those around me what my limits were in terms of, for example, social evenings dining out. It helped that everyone around me was very conscious of my compromised condition and was at pains to find out how much I could handle.
        Obviously, if someone was in a situation where there was some kind of communication blockage involving the patient and the people in the patient's immediate circle, then there would be a problem that I did not face. However, I don't have any insights into how such a communication problem might be overcome.
        Those, then, are my eight main tips, all focused on what, for me, was my key problem as a cancer patient: the management of information.
        If you seriously wanted to internalize what the eight suggestions are, then the next step would be to abandon this page and try the experiment of writing down the eight hints, from memory. In summary:-
        1. Consolidate information in one place.
        2. Review information. ` 3. Take observers to medical consultations.
        4. Review medical consultations with observers.
        5. Check your understanding.
        6. Prepare for a medical consultation by making a list of questions to ask.
        7. When you get notions from online research, check these notions with a medical service provider, with someone who knows what they're talking about.
        8. Don't be silent. Communicate your problems.
        If I was going to stress one of these points it would be number two, "Review Information", something which I signally failed to do. I am the English teacher, the professional, the guy who stands up in front of classes in Japan and tells his students to remember that the human brain is designed to forget. If you want to remember anything, you have to review it. But I, a lifelong obsessive note taker, never reviewed my own notes. Writing this "Cancer Patient" book I was repeatedly surprised to find stuff written down in my notes which might have been useful to know at the time, but which I didn't know.
        Why didn't I know?
        Because I wrote it down then forgot about it.
        At least, because I did write things down, I had the material for this book. A lot of the detailed day-by-day material is a direct transcription of my notes. It's something that comes from my written archive rather than from my living memory. In memory, most of the fine detail has already faded away. I don't know how much of that fading is the consequence of disease and how much is just the way things function in ordinary life. The mind truly is designed to forget rather than remember.
        "Milk ... banana ... bread."
        A list, evidently, and maybe an important one. But I can't for the life of me recall the fourth item. If there is a fourth item. But, if I check my notes, I guess I'll find it there.
        Do take notes.
        But notes which are not read are, as I found out, sometimes of very little use at all.
        At the end of a long journey and at what may perhaps be the start of a longer one, what I would say to anyone in the same situation is, finally, quite simply this:
        Good luck!

The End


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The text on this page is part of the cancer memoir "Cancer Patient" which has been posted online. All the chapters of this book are on this website and can be read for free online. However, the text is copyright - all rights reserved. For permission to use this text or any portion of it contact Hugh Cook.

Disclaimer

        This personal memoir of the writer's encounter with cancer (non-Hodgkin's lymphoma of the large B-cell type) attempts to cleave to the truth. However, the text may contain information that is wrong, outdated, incomplete or otherwise misleading.
        This memoir has been written in a time of illness by a cancer patient who, though he feels sharp enough, must admit to sometimes misinterpreting things, forgetting things, or, on occasion, quite simply not hearing things.
        This memoir is designed to communicate the writer's personal experience and is not intended as a source of medical information. Got a medical question? Ask your doctor.

Cancer Patient Copyright © 2005 Hugh Cook.

Hugh Cook

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Ask your public library to buy CANCER PATIENT - a medical memoir of potential interest to cancer patients, their friends and family. This book would be a very good addition to your local library or university library.

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Author: Hugh Cook
Title: Cancer Patient
ISBN: 1-4116-5387-4

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