Advice For People Dealing With Cancer, Or A Possible Diagnosis

How to go through this ordeal, without completely losing your mind.

I had cancer. I talk about it in the past tense because, as we speak, I’m close to three years in remission, and all the tests after my treatment point to me being clear of my cancer. All the MRIs I’ve had so far came back clear. In the medical jargon, I’m NED. “No evidence of disease.”

Let’s start with the most important piece of advice I have for you:

You are allowed to feel whichever way you feel.

Do not, even for one second, feel guilty about your feelings. If you feel that life is unfair, that’s fine. If you feel like crying, that’s fine. If you don’t know how you feel, that’s fine too. People are going to come and tell you to think positive because your recovery depends on it. As is usually the case with those people, they are well-meaning. They may even point to “studies” about how people who have a positive attitude are able to recover more easily or in greater numbers. In my estimate, this is a confusion of correlation and causation.

However, no matter how well-meaning they may be, their problem is that they are unable to listen to your suffering and endure your mood. So they focus on the symptoms. Here the symptoms are the things you say, or the tears you cry. They talk about silver linings and all that jazz, in order for you to cheer up, so that they don’t have to listen anymore. Point them to this very article if you need to.

There may still be a silver lining, and whether and how this silver lining will materialize for you is highly contextual. My cancer almost killed me, and yes there was a silver lining, but I did not experience it until a good year after my treatment ended. I’ll talk about it later.

If you get a diagnosis of cancer, it pays to get a second opinion. I’d go as far as saying that you should get a second opinion for any complex disease. Why? For one thing, I was misdiagnosed initially. First, with a stroke. Then, with multiple sclerosis. They even treated me for multiple sclerosis. It was a very bad deal for me, as the treatment that I received dulled my tumor, and might have delayed my proper diagnosis. Even once you are sure to have cancer, a second opinion may give you more options as far as treatment goes. I’ll talk more about this later.

I would not be writing these lines if I had not obtained a second opinion. I’d be dead.

Furthermore, I would suggest keeping contact with a community of people during your treatment. This is easier said than done for some cancers. If you have breast cancer, I expect that you can easily find such a community. My cancer was a PCNS lymphoma. Lymphomas are not rare, but this specific type of lymphoma is rare, especially in someone as young as I was. Still, I managed to keep in contact with several communities, some dedicated to cancer, some not. I even got on a forum dedicated to lymphomas. I had the foresight to buy a very light Chromebook just prior to the biopsy that finally diagnosed me. My laptop would have been too unwieldy, and I do not like to use my phone to write at length.

My treatment coincided with the pandemic. My ex-wife was around for some of my doctor’s visits. However, most of it was a solitary affair. If you are one of the “lucky” ones, your treatment may be given by pills, or by going to an outpatient facility where you receive infusions. My own treatment required that I be hospitalized with each round of chemo, for four or five days, because they had to carefully monitor my blood levels. My wife would drive me to the hospital, and drive back home. The same thing happened, in reverse, each time I was discharged.

If things do not go your way during treatment, be vocal. I did lodge some formal complaint during my treatment, because some things were not done up to professional standards, like my first discharge. I was an unusual case, and my discharge nurse was inexperienced. Someone from the complaint department came into my room to talk to me when I was admitted for my next round of chemo. I think they learned their lesson.

I also had to ask for an additional anti-emetic during my treatment. The initial mix was no longer working as well as it did initially. They listened to me, added the new drug to my mix, and my vomiting problem went away. Similarly, one of the time they administered lasix to me to treat edema in my legs, they did not take into account that I have gout, and it triggered a gout attack. I reminded them that I have gout, and this did not happen again. I hate to say this, but it pays to brush up on your medical knowledge, in order to be able to tell the doctor what you need. Here, too, a community can be helpful.

Don’t be surprised if you cannot fix everything. It did not matter how much I complained about the dining services, they were idiots, impervious to any complaint. They messed up in just about every way imaginable.

Another way getting a second opinion was useful is when it comes to possible treatments. I had chemo, which kicked the cancer out of my body, and a stem cell transplant, in order to prevent the cancer from coming back. I was initially thinking about getting the transplant at the same hospital where I got my chemo. However, the head of the transplant unit proved to be such an idiot that I decided to go to another hospital. Here, I got a second opinion, inadvertently. This second opinion showed me that all treatments are not equal.

What I learned was astounding. The first hospital was going to have me in the hospital for a week. Then for the next week, I’d have to find housing in town so that I’d be able to go to my daily appointments at the hospital. My ex-wife and I lived about one hour away from the hospital, which was too far. This was at the height of the pandemic. My ex-wife and I were worried sick about having to find housing. The second hospital offered essentially the same treatment, but they would keep me in the hospital until I was ready to go home! What a world of difference this made!

I mentioned a silver lining earlier. My silver lining came in an unexpected way. My brain was modified by my cancer and my treatment in such a way that I stopped caring about social conventions. I was in a marriage that was already in trouble a few years prior to my cancer. After I survived this cancer, I did not want to hide the fact that I’m pansexual, and desirous of polyamory. My ex-wife did not follow me in this, and thus we divorced.

A second silver lining came from the fact that getting punched to the face by this cancer softened me. It made me more patient, and kinder to other people. This became evident in the dating that I did after my ex-wife allowed me to date again, while we were divorcing. I want nothing more now than to blanket my lovers with affection, and kindness. I want to be a support for them. My wife was no longer receptive to this aspect of my personality… not sure why.

A third silver lining came from the fact that the ablation of my brain made me realize that I’m autistic. I’ve been autistic all along, but my cancer weakened my ability to mask, and made my autism patent. I do not talk about autism much in this article, because I did not know I was autistic during my cancer. Still, the advice I gave applies. Be vocal with your needs. Generally, the nurses want to help you, but they cannot help if they don’t know what your needs are. If I were hospitalized now for cancer, I’ll tell them that I’m autistic. I’d do the same with my doctors.

If you are facing a possible cancer diagnosis, or are dealing with a cancer diagnosis, I wish you the luck that I had. I was almost dead, but the doctors pulled me back from the brink, and now I am able to do what every Zen student aims to do: use my own life experience to help others.

May you have the fortune to have by your side compassionate people, who are able to listen, without judgement!

You may reach out to me if you need to.






One response to “Advice For People Dealing With Cancer, Or A Possible Diagnosis”

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