Some thoughts on living with cancer (part 3)

October 12, 2020
  • October 12, 2020
  • Cancer blog

By Gary Maavara

I hope that by sharing my insights, others will find answers and offer some of their thoughts as well. Here is a continuation of the things I’ve learned. But before you read my #5, I’m going to skip to #11 – because it’s especially important. If you remember nothing else, I hope #11 resonates:#11. Live Your life.

Remember that you are loved.

And remember that your loved ones are struggling too so help them back as you can.

But whatever happens keep living your life. Never give up. You are stronger than you think.

White Ibis giving the victory or peace sign.

Now back to the order of my lessons…

#5. Form a Team, Listen to Your Medical Team, and Keep Track.

Deciding when to tell others can add to the strain of the first news. I know that some people are afraid of their employers. In my case, I worked for a great company of people who had the policies and the attitude to help me. If that is not available, try to develop a small cadre of people (starting with your buddy) to talk with and sometimes to do stuff with. Again, I am forever indebted to many people, starting with my wife and my sisters, who get me through some challenging and dark days. 

This may seem obvious but you also need to have a discipline for listening and keeping track. In my case my ears stopped working about six words after the doctor said, “you have a serious cancer…” It was a shock and I am sure he had lots of other important things to say, but I missed it all.

Having a buddy to come with you, as a second set of ears, is important especially when you are hearing bad news. This is crucial at the start. In my case, I was lucky to have a lovely wife who really knows her way around medical cases based on a variety of family experiences.

Take notes as much as you can. Your buddy should too. It really becomes important.

Each of us “hears” and understands different things.  So it really helps to have others with you so you can compare notes.  If no one is with you, ask the doctors if you can review what they said in your words.  This will clarify in your mind what they said and it also helps them to be sure that you comprehend what they said.  This can be crucial when deciding on the next steps course of treatment.

Assume the medical team does not remember much about you. The volume of people they see makes this difficult. And you will see different or new people who don’t know you.  Sure they have a file but it gets fatter over time and they simply don’t have the time to review it all each time.

Keep a diary. I do an entry after every appointment so it runs in reverse order. Note everything, as something that seems trivial to you might be important for the doctors. I update an executive summary at the top of the document with the latest situation report, drugs, doctors etc. that I can print off and bring with me each time.

Listen to your body and note things. Keep track of this along with your clinic notes. Prepare carefully for each doctor visit.

These days we are lucky to see what the medical people are writing about us as much of it is online.  Check that carefully for typos and mistakes.  They happen and they can be crucial to someone looking at your file.

Of course having a significant person with you such as a spouse means that they hear the information directly. That can really help you manage the process.

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