Coming Out as a Cancer Survivor – A Guide for Software Developers

A personal perspective on the responsibilities of a cancer-surviving software developer

A Personal Perspective on the Responsibilities of a Cancer-surviving Software Developer

By Douglas Reilly

My family has a genetic predisposition towards cancers of all sorts. My father died of cancer in 1975. At home, of course, we talked about what was going on in some detail. However, my father did not feel able to inform his employers of his condition, and I would not be surprised if only one or two close friends at work were aware of it. My brother Bobby died of cancer in 1997, and not a lot had changed. Bobby was fearful of his employer knowing the details of his illness and so the succession plans that would have made things easier for both of them were not in place. As a result, neither my brother nor his employer was properly prepared for his death.

I was first diagnosed with cancer in 1998. Luckily for me, we had just entered the new era of cancer survivorship, officially ushered in by Lance Armstrong. Lance was a testicular cancer survivor. Having been diagnosed in 1996, he not only recovered but returned to racing and scored the first of his seven Tour de France victories in 1999. By the time I was diagnosed with primary liver cancer (which is now considered cured, as I will define “cured” below) in 1998, Lance was on the comeback trail and to people like me (cancer survivor and cyclist), he was already a hero.

Thanks to the inspirational example of people like Lance, and to advancements in the medical treatment of many types of cancer, many people now feel able to deal with cancer more openly. Following my recent diagnosis with Mucinous Adenocarcinoma, not only do I keep my clients informed of my condition, I also post my daily struggles with cancer survival on my blog. My honesty has probably cost me a client or two, but this is more than compensated for by the feeling of trust and comfort I have with the clients I retain.

Employee vs. Consultant

If you find yourself in a similar situation and decide to “come out”, the issues you face will be somewhat different depending on whether you are an employee or a consultant. I have been a full time consultant since 2001, and was a 4-day a week employee and part time consultant for many years before that. In my case, I have multiple clients, and had to worry only if all my clients decided not to continue to work with me.

As an employee, the issues are really all tied to your employer. What sort of relationship do you have with your employer? Is it a friendly relationship? Do you have a warm-and-fuzzy feeling about how they might react? Is there any law that might require you to let your employer know about your illness? For instance, in the United States, there is a law (The “Americans with Disabilities” Act) that provides some protection, and also stipulates some special treatment for folks with disabilities (and cancer could be considered a disability for this law). To get the benefits of the law, you likely have to be completely open about your condition.

Characterizing Your Cancer

For purposes of this discussion, we can place cancers into one of three broad categories:

Curable/Cured
A number of cancers can be considered curable. Many early breast cancers, early colon cancers and early prostate cancers can be cured, often with surgery alone, sometimes with surgery and other treatments. My liver cancer was considered cured in 1998 when the entire cancer was determined to be primary from the liver (meaning that the cancer originated in the liver and did not spread beyond the liver), and the tumor was completely removed.

If your cancer is cured, you can simply go on with your life, although some cancers are only considered cured after a number of years of “clean” reports. My liver cancer was considered cured immediately after surgery, since the surgeon was certain all traces of cancer were removed; Lance Armstrong’s testicular cancer was considered cured only after 5 years of clean scans. Cancer as a curable disease may be a new concept to your boss or clients and they may require some education on this point. One of my clients had a relative who had died of a colon cancer that spread to the liver, and he found it difficult to regard as curable my totally different primary liver cancer. I was able to convince him through education, and to this day he is a good, reliable client.

Once you are cured, I believe there is no requirement that you tell future employers or clients about your prior illness, unless the follow-up treatment will require cooperation from the new employer or client.

Treatable
A large number of cancers are not, strictly speaking, curable. For instance, my recently diagnosed mucinous adenocarcinoma is not considered curable. However, treatment for such cancers can often lead to it becoming more of a chronic disease. Through various internet groups, set up for people who have mucus-creating tumors, I know of people who have survived as few as 2-3 years, or as long as 10 years. It is difficult to predict the exact length of time you might have, if diagnosed with a treatable cancer. However, in the case of my disease, even 2 years can be a long time. Nevertheless, it is unlikely that most folks can simply curl up in their rooms for two or more years without some form of employment.

Not Curable/Not Treatable
If your doctors tell you that there is no cure for the disease, and there is no reasonable treatment for the disease, or if given an explanation of all that is involved with treatment, you decide the possible gain is not worth the likely cost (both physically, emotionally and financially), then the cancer can be considered incurable. In this case, read the next paragraph, and then go and spend time with your family.

One advantage we computer people have is that we should be able to use our computer skills to keep up-to-date on the latest advancements in treatment for our disease. For instance, the rare cancer, Gastro Intestinal Stromal Tumor (GIST) was once considered a largely untreatable and incurable disease. In about 2002, Gleevec appeared on the market as a treatment for Chronic Myelogenous Leukemia (CML). Shortly after the medication was introduced, it was discovered that Gleevec could also be used to treat GIST tumors. Keeping abreast of developments in the treatment of our disease is the one thing that we, as computer people, can and should do. There are several useful sites in this regard, as well as groups where you can find information and support. For example:

Around the Office

There are a number of things that I have found helpful in my dealings with coworkers and clients. First things first: if a coworker has a “need to know” about your health situation, let him or her know one time in fairly general terms what you are going through. Then, wait for your coworkers to come back to you if they have more questions. If they have more questions, then answer them at whatever level you are comfortable. You will discover that some people are very uncomfortable about cancer, and will never speak of it again.

Try not to make discussion of your treatment something that comes up every day. Unless you want to be known as “cancer guy (or gal)”, let others lead any further discussion of what is going on with your care.

Next thing is this: cancer treatments can change the way your body looks, whether that be loss of hair, weight loss or gain. Depending upon the workplace, coming in bald after a chemo treatment might or might not be considered appropriate and acceptable. If it is not acceptable in your workplace, most insurance will pay for at least a part of the cost of a hairpiece. Get a good quality hairpiece! You are worth it, and looking good can help restore your morale and confidence. Many hospitals also have a “Looking Good, Feeling Better” program that can help women with makeup tips as well, which can minimize the effect of loss of hair.

If you lose or gain a lot of weight, make sure you buy clothes that fit! I made the mistake of thinking that my weight would come back, and so wore clothes that made me look like a rag picker. A client who had been working with me throughout my liver cancer, without a word of concern, got very nervous when I lost a lot of weight and showed up in clothes that were way too big. In fact, on this occasion, the weight loss had been caused by a surgery that did not involve any active cancer (though it was to prevent a possible future disease). I have learned my lesson and, recently, when my cancer treatment caused me to lose weight I immediately went out and purchased new clothes that fit me correctly. When the same client saw me, he commented that I “looked great”, even though I had lost about 10 pounds. That was money well spent.

Part of the reason I lost so much weight after my precautionary surgery was that I felt so great afterwards that I started exercising, walking and riding my bicycle. When I rode a 2-day, 170-mile bike ride for a charity, I made sure all my clients knew I was doing the ride, and made a point of letting them know that I finished it. Nothing helps someone accept a cancer survivor more than realizing that the cancer survivor is in better shape than they are!

The Responsibility of a Software Developer

My surviving brother, Tommy, is a unionized worker who delivers muffins. As Tommy explains it, he goes into a store, removes the old, stale muffins, and puts in new, fresh muffins. Were Tommy to become ill and die, it is not likely that a new delivery person would require more than a week or two to get completely up to date on how his route works. As such, any responsibility that Tommy might have to his employer, in making sure they understood his condition and the possible future outcome of the disease, is minimal.

Most software developers are different. While there may be no legal responsibility to make our employers or clients aware of possible longer term health problems, I believe there is a moral responsibility to ensure that, whatever happens to us, our employers or clients are protected and able to continue functioning.

Years ago, wherever I worked, I had a cartoon that hung in my office. It was from an early source code control company, and it showed a woman with two small children at a graveside. A man in a suit walks up, and the caption says, “Do you recall him ever mentioning Source Code?” These days, that is less funny for me than it is poignant.

Even when I got the “all clear” on my first liver cancer, I nonetheless tried to ensure that all clients had the source code that they should have, and I tried to ensure that, where possible, internal support staff were up-to-date on the status of all existing work. More recently, I have made it my habit to deliver new software with the source code, and to assign the client the rights to that source code.

Specifically, as a software developer who has been diagnosed with a serious illness, what should you do? I recommend the following:

  • Make certain that source code is where it should be. If that means that the client should have it, make sure they do. If that means that it should be checked into the employer’s source code control system, make sure you do.
  • Clearly document anything “strange” in the source code you deliver. When I am coding, and I do something in the source code that is either very clever (perhaps too clever) or potentially confusing, I place a comment in the code that will encourage me to return to the code to address the issue. In Visual Studio, placing a TODO comment is a great way of tracking such sections of code. Whether you clearly comment the code, or (better yet) clean up the code, you should make sure that another developer can understand it.
  • Make certain you have a “buddy” developer who knows what you are doing. This is a time when you might want to take a young developer under your wing. Whatever happens to your health – win, lose or draw – what better legacy is there than to have brought up a new developer.
  • Consider moving to a different job, especially if your illness is not curable. If, as a consultant, you are acting as primary developer on systems for small clients who have no internal support, then you might want to reconsider. If, as an employee, you are the only one with your job title or specific responsibility, then at the very least you should have a succession plan in place. It is also possible that you can use different talents or skills to find an alternative position within the organization. For instance, if you have skill and an interest in writing, then a job in the documentation department might allow you to take a step back from software development, while continuing to leverage your knowledge of that software.

In general, the rule for anyone with a serious illness (especially if that illness is not likely to be curable) is this:

Make sure you are not indispensable!

Early in a career, making yourself indispensable might be a good thing. Being the hero, pulling all-nighters to do what needs to be done, might be a good way to boost your profile within the organization. However, a cancer survivor, especially one whose cancer may not be cured, needs to take a different view.

Summing Up

While this topic might be considered somewhat of a downer, I think that many of the ideas presented here should be considered by software developers regardless of whether they have a serious illness. Might the guy in the next cubicle walk out in front of a bus? Might the gal across the hall have a massive stroke and become unavailable for weeks at a time? Of course. As software developers, we need to recognize the special relationship we have with employers and clients, and to make certain that we have dotted all the i’s and crossed all of the t’s. We should ensure that, no matter what happens, we have taken care of our responsibilities such that, in the event of our departure, our clients and employers can continue to function normally.

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  • Anonymous

    neverCommentedBefore
    I am impressed with the grace with which you address our very real and almost universally denied mortality — ‘our’ in this case referring to every living organism including (gasp) people. You make death simple — which in fact it is. We die. Period. Nothing glamorous or write-home-about about it.

    –recently diagnosed locally advanced breast cancer person

  • Anonymous

    Non Hodkins Lymphoma
    I worked, and still do for a national home improvement retailer, when I was diaosed with Stage 4 NHL. My employer was very supportive, and even sent me a floral arrangement, at the appropriate time. ( Just when I needed it most)
    I had to go on disability, and made of a “go of it” on my own. It took two months to get disabilty compensation, “Thank GOD” for friends. I wouldn’t wish what I went through on my anyone.
    I’m one of the lucky ones, because I’m in remission for 15 months, and back to work. My doctor says I’m cured after 3 years.
    I understand “Why” you wrote this article, and you are to commended for the way you present this “eye opening” experience.

  • Anonymous

    Cancer fighter
    Very well written. I had some minor pains after my car accident. Thanks to this pain which was not serious, they discovered by accident I have kidney cancer. Initially I accepted the fact that one kidney will be removed and I will somehow finish my working life and wait another year for my pension. However, since I love my R&D work, I did not like it too much. During the first sleepless nights I started to do some study on the internet, and found lot of cures for a few dollars per day (cottage cheese with linseed oil as per Johanna Budwick, Avemar, Alcacora and other herbs from peruvian Ands, herbal teas as per Maria Treben,daily intake of fruits and veggies with high contents of antioxydants, phytochemicals, turmeric, green tea, red wine, chocolate, etc. as per some literary sources). I informed my employer and coworkers and found a great support, and also a few fans for my goal to fight the cancer on my own. I was lucky to be one of a few people in Canada to get enrolled in the university R&D study (the rate of growth of tumors), and get MRI and other tests every three monts. Today I had my first MRI and I am waiting for the results. It is very important to be open about the illness, to be rather busy working, and to be optimistic. Only during the night my brain is sometimes wondering on its own and I do not get full night sleep. However, I enjoy the life, my family and friends, and hope I will win the battle. I wish everybody would get informed about the cures and especially the prevention through simple changes in our diet, instead to go for the operation, radiation and chemotherapy.

  • Anonymous

    justaFriend
    Live Strong and live each day as it is our last.

  • Anonymous

    my daughter
    my daughter was 8 when she was diagnosed with pre-B cell ALL. I am very proud of her we have a sign on the back of our van that states: Forget the Honor Role my daughter is beating Leukemia. She has a long way to go and a lot to deal with.

  • Anonymous

    C.S. Chick – Hodgkin’s Disease Survivor
    Your article was amazing! As a Computer Scientist (i.e. Software Developer) and a Hodgkin’s Disease Survivor, I could empathize with you and your very real concerns/feelings! I find that talking about my cancer really helped me to “heal” from the experience ….and it gave me the opportunity to educate friends and coworkers.

    I wish you a speedy-recovery and all the best! Remember: Cancer may change your Life…but, don’t let it stop you from Living your Life!

  • Anonymous

    Excellent
    Thanks for this piece Douglas. I’m just getting over CML. Glivec is a great drug but it does leave the brain in limbo and reduce heart muscle. The good news is that a cancer considered fatal 10 years ago can be held at bay for at least 5 years. Although the cure isn’t there yet (a bone marrow transplant is the only chance of cure) more advanced therapies and drugs now being developed may just prevent CML reaching its further stages.

  • Anonymous

    You did it
    Hi Douglas,

    In some circumstances, some draw in on themselves, concentrate on leisure or take other measures they judge appropriate. Those who go beyond individuality deserve respect, both for the favor they do to others, and for their interesting way of earning their share of posterity.

    Trying to raise that very topic among a circle of developers and administrators, I got a few raised eyebrows, and sincere concerns about my health. Such precautions could only denote morbid or frightened lines of thoughts. Now I’ll make sure they’ll read what you have to say on the subject. I guess you’ll be taken more seriously than I was!

    My concern on the same subject was far from morbid. Just an idea that a work well done is not only something many thrive on on a daily basis. It can become part of what we are, and if the work is good enough, what we have been.

    Many must have wished you many things already, and I avoid repeating myself or others -except in loops, that is. I wish you to stay yourself whatever happens. Seems one part of the work is done already!

    Thanks for the eye opener.

    Mike

  • Tony Davis

    Anonymous comments disabled
    Due to relentless spamming, I’m afraid that I’ve been forced to disable anonymous comments on this article.

    If you wish to contribute a comment to this article, you will need to sign in, or join, if you are not already a member. While  I regret having to do this, especially on this particular article, I hope people will understand and will sign in and continue the debate.

    For more information read: Simple-Talk policy on anonymous comments

    Thanks,

    Tony Davis (Simple-Talk editor-in-chief).

  • MOHCF

    Mission of Hope Cancer Fund
    Our primary purpose is to provide Direct Financial Assistance to cancer patients and their families. MHCF also provides educational information and emotional and grief support on cancer related issues.
    http://www.cancerfund.org/
    http://www.youtube.com/watch?v=fTBveYBJlFo