Loss and Adaptation

I thought this was interesting, and I wanted to comment on it.

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How are lives altered after the diagnosis of a brain tumor?

Recently I did a research study with several expert nurses around the country. We talked with survivors and caregivers about what is was like at least three years after the diagnosis of a highly malignant brain tumor.

MY COMMENT: I don’t think as long as 3 years is required to get accurate information on this, but it’s interesting that they have significant numbers of survivors after 3 years. These may well include Class 3 as well as 4 tumours, and be of types other than GBMs.

One word that we consistently heard was CHANGE. Survivors and caregivers had experienced change from the time the symptoms came on and the diagnosis of the tumor was given. Cognitive changes occurred and often resulted in short term memory loss and inability to process. Managing several tasks at once becomes impossible when it used to be so easy. Many times the caregiver had to take over some of the responsibilities of the survivor. The spontaneity of life seemed to stop as plans for chemo, or other treatments and the next MRI took precedence.

ME: this is so very true. Short-term memory loss is a very significant one for me. Nor is it easy to make quite simple decisions, like what cereal to eat at breakfast!

Another word was LOSS. Many survivors felt a loss for the job they used to have. Some survivors mourned the loss of their intellectual capacity. A loss was felt about the change in the relationship with their caregivers. Some survivors felt a loss of social status in the church, or even in their children’s school.

ME: I have always regarded myself as fortunate, before and after dealing with this illness, but this is not to understate this very powerful feeling of loss. I would never have understood it properly if it had not been my fate to experience it. I’m sure the aging feel this also, some very keenly.

So what sort of loss? It is in so many things, some small but poignant.

For example, Tracey found my Dolmetsch recorder – you know, the ones kids torture everyone by playing at school concerts. This one of mine is 50 years old, wooden, and still in good condition. A recorder played well is a beautiful instrument. Rather like a violin, if it isn’t played well, it’s excruciating, as thousands of teachers will testify. Alice played alto recorder beautifully.

Anyway, when Tracey found mine, I instantly went to play Greensleeves on it, but of course, my right hand is very stiff because of the tumour effects, and couldn’t even cope with covering the holes. 

I used to play it nicely. Gone, just like that. Play squash? No more, ever.

I used to be a pretty good fisherman. I looked at my light fishing rods in the garage. Now I can’t wind the reel, or feel the line delicately with the fingertip, that tells you everything about what’s happening metres under the water.

Gone. But as I haven’t been fishing for a long time even when I had the choice, that’s OK.

Use my videocam to film musicals, or autumn colours? No more. Chop wood with an axe? Dice vegetables to cook? No more. A knife in my hands is pretty dangerous! Cook dinner? Something I enjoyed very much. Impossible. Scoop out a persimmon one-handed? Messy... very messy. Peel prawns? Nope. Fiddle with computer cables? Highly frustrating!

Finally, the survivors and caregivers found some ways to COPE with the change and loss. They saw their lives in a new perspective. They valued their relationship with their families, and realized that life is precious. They found new friends in support groups. They began to take one day at a time.

ME: This is the vital bit. Wisely, the article doesn’t end on a low but looks ahead and at the positives. The key is adapting. There are circumstances you can change and some you can’t. If you can’t change them, then accept them. If you think you might be able to make things better by your own actions, then try. That’s what I did with exercise to reprogram my brain so I can use my right hand more effectively. And when it comes to relationships with those you love, adapting to the circumstances is critical.

The worst thing you can do is wallow in self-pity. Sure, we have a right to feel that sense of loss. We have the right to mourn it like the death of a loved one - because it IS the death of a loved one - the person we once were and we can never be again. But we have to move forward and not dwell in regrets and what might have been.

Lives are dramatically altered after a brain tumor. It is painful but, for most people, some positive aspects are found.

Mary Lovely, PhD, RN

Medical Information Specialist/Associate Director of Research

ME: Amen. There are. But those are for you to find out, because each case is different. Don’t forget that. There are similarities, but there are at least as many differences. There’s only so much indulgence in self-pity you can and should allow yourself, because it wastes quality time.