And it is really tough to hear anything other than “dead soon” in those words. That is the acute emotional reaction to news of a brain tumor in you or someone you love. But the symptoms of the disease are treated, they go away, the mind returns and you then get to the business of what to do about it.
You cannot predicate the future so the doctors say weeks to months. The doctors that have the tools to do something about it – radiation, chemo or surgery – have more optimistic predictions as they have some power to cut out, kill or retard the tumor cells ability to replicate. The rest of us float in a fog wanting it all to be a dream.
But the doctors can’t predict the future so they have to say weeks to months. 5 years is 60 months and there’s a 4% chance of that. They encourage you to get your affairs in order because it’s just good practice and because it forces the family to have the conversations that are easy to avoid otherwise. Being alive in 5 years is a possibility. Being alive in 1 year is a good likelihood. Feeling better than before being diagnosed is an almost certainty with treatment. But the decision to undergo treatment needs to be made and it should be made with some level of understanding of what the treatment is like.
I happened across a site by and about a guy named Ted who was diagnosed with GBM in 2006. An interesting first hand account of what it is like to get treated and to live with a non-growing tumor in your body. I particularly liked a section written by his wife:
Personality Changes: Ted’s attitude had gotten really bad right
before he was diagnosed. He was angry all the time and kept telling
me he had no passion for a cause anymore. Fortunately his anger wasn’t
directed at me. He seemed to be angry at the world but at the same
time he felt numb. He went from the energizer bunny to not wanting to
see anyone or go anywhere. At one point, I asked him what he had
done with my real husband.
The day before he was diagnosed I actually told him I thought he had a
brain tumor. So I wasn’t as shocked as he was when the doctor told us
that he did.
Mood swings: After surgery the doctor predicted mood swings. I was
really concerned. He did have a few, but as he has healed, the mood
swings have virtually disappeared and he has gone back to pre-tumor
behavior. I have him back. It’s wonderful. I will always be
grateful to the surgeon for bringing him back to me.
Having seen a lot of the passion my father had for live disappear over the last 6 months it’s reassuring to read that it is cancer. The foundation of the world shakes when one of your mentors seems to give up hope for anything. It’s nice to know that the hope and passion are still there, they’re just being blocked by a tumor.