Some thoughts on living with cancer (part 2)

• September 28, 2020
• Cancer blog

By Gary Maavara

I’m back and hoping others find my sharing helpful. For me, the lessons learned from cancer have been numerous and enlightening. I welcome your feedback and hope you will join the conversation so others can relate and learn from your experiences. Though I expressed earlier that everyone is different, oddly, when it comes to cancer, we are all in this together. Here is a continuation of the things I’ve learned…#3. You are the boss.

The medical system can be intimidating and having cancer does not make that any easier.

But it’s your body and your life, so follow advice but always remember you are in charge. If something is not clear, ask.  If something does not seem right, figure out how to make it so.

In my case my first doctor made a diagnosis that was just plain wrong. I endured a few months of intense pain before I went to get another opinion. It was almost too late.

Sometimes getting a second opinion is a waste of time, but it can also reduce anxiety. And maybe it’s not about getting another opinion but simply checking references. I did that and found out that my current team is the best on a world measure.

Your body will do the job of healing. Be sure that you are comfortable with the advice and the treatments you are getting about how to do that.  Don’t be shy to ask about other treatments.  And ask what the medical words mean.  There are plenty of them.

The best approach is to think of your illness as a management challenge that requires a special task force.  Get all kinds of advice from your team but remember that the final decisions are yours to make. 

And you will be called upon to manage your treatment.  Mistakes will make, both trivial and important.  So you need to stay vigilant even when you don’t think you should.

#4. Stay away from the Internet.

Ask lots of questions and ask the medical people to explain things. Be aware that using the Internet for research can really take you down some rabbit holes and cause needless stress. Yes get informed, but don’t try to be your own doctor. 

For example, when I first got what was a dire diagnosis, my medical team asked me if I wanted to try an experimental treatment. They gave me a couple of days to think about it and of course I went home and got on the web. I found an important study that said that the average benefit of the proposed drug was a 17-day increase in life span.

I went back very depressed and told the team that I would pass as it was not worth it to anyone to try for an additional two weeks.

I got a nice smile from the team leader who said, “You have been on the Internet.”

And then he proceeded to talk to me in a gentle way about my points # 1 and # 2 and that it was a statistical report done by an economist and I had to remember that the experiment was used on people who were in real trouble. He explained that they figured I would get another 12 months and by then maybe something else would be available.

I am happy to report that he was right. My treatment started to fail but they had something new to try 12 months later. 

That said, the Canadian and US Cancer Society sites and the Mayo Clinic are pretty good but they can’t give detailed advice because everyone is different and treatments are evolving quickly. They also need to worry about legal liability about specific statements.

Get expert advice about whatever you face that is tailored to you. Most often, you can find this for free. Most hospitals have services and counselling available. There are also volunteer support groups that are happy to help you.

If you do use the Internet, discuss what you find with a professional on what it means before you jump to conclusions. Remember point #2 about the complexity of our bodies.

Don’t be shy about asking your medical team to explain what is going to happen. 

Ask about the side effects of treatments. These can be substantial and affect your decision-making. And if your treatment is about to change, be sure to ask what could happen if you stop taking a drug. Some drugs like Prednisone have powerful withdrawal effects that your doctor can help you avoid.