There is a meaningful life after any brain tumour.
Self compassion, patience and fortitude are, in my humble opinion, essential qualities to allow a Life full of possibilities and give the brain time to create new connections. That is what I have learned.
Sleep and rest are essential for the recovery. The secret is to learn to listen to one’s body needs.
A change of optic and angle of vision would lead to a discovery of potentials unknown until then.
I am thinking for example of a highway that we take regularly without paying any real attention to the surroundings, self absorbed as we are in our thoughts.
A tumour represents the collapse of this highway. Do we stop reaching our destination?
We would have to go through ‘unknown detours’ that may take more time but will allow us to discover new scenery, maybe less organized, worse paved but rich, if not more and more beautiful and peaceful.
Is it a disaster?! In fact it is a major upheaval, one more in my 64 years of life. At 81 I am still going through many.
With every upheaval I am getting lots of irreparable bruises and losses every time but each time to help me face adversity I discover new capacities in my determination to lead a meaningful life and reassess my scale of values.
For the longest time I had been treating my headaches with aspirin. I was feeling a freezing cap covering my head for a few seconds at a time. I was losing my sense of smell and taste as well as my hearing. I thought that the sharp pain on the left side of my face was due to a tooth ache. I was brushing off all these symptoms and attributing them to the level of stress in my life.
Since I was living in Ontario at the time, I could only be referred to an audiologist by a family physician. Luckily mine determined that a scan of my head was needed and requested one.
In my case, at end of May 2004, it was a large meningioma on the left side of my brain: either its removal or the wheel chair.
I had to deal with a visceral anxiety for me and my family. I did not have the right to fall apart because my husband was sick and very hard to please as he had not yet been officially diagnosed with Alzheimer.
I thought if I have to end up in a wheel chair why not go for surgery. And if I don’t come out of it?
This anxiety, always in the back of my mind, resurfaces before each test, each headache, each tingling in my left cheek and each health issue.
At the end of my appointment with the neurosurgeon, 7 weeks after the diagnosis, as I was asking him a lot of existential questions I also asked him, “Is my tumour due to all the chocolate I have been eating?” It made him smile finally.
It was only by the end of July when surgery had already been booked for Thursday October 15 after Thanksgiving that I informed my family. My husband could not grasp the seriousness of the situation, however my three sons asked why I had not told them as soon as I knew the diagnosis. I responded that I did not want to worry them, but their reaction moved me even more, “We would have been by your side from day one had we known.”
After more than 9 hours of surgery, with only most of the tumour removed, 10 days in the hospital and almost one month in bed, I have found myself like a new-born having to relearn everything: find my words and express them, get dressed, hold a knife, eat with a fork or a spoon, hold a pen and form the letters, regain the strength in my muscles but most of all coordinate my thoughts, my eyes and my fingers.
For 4 consecutive years I had headaches. The audiologist suggested to request a scan of my neck because my head had to be stabilized in a position that could have displaced the vertebrae, which was my case.
I relearned to live, to drive my car without feeling submerged by the traffic, to tolerate noises, bright colours even electric light. For the first time in my life I enjoyed watching a flower bloom, a spider weave its web.
I have learned to convey my needs simply to the wonderful people who have walked me through to my recovery.
I travelled again, entertained friends, wrote letters to newspapers and addressed the Municipality Council in Guelph, ON and other institutions many times.
I have participated in many Brain Tumour Walks and in every Support Group meeting because only survivors can appreciate our ordeal.
In brief my life was again full of happiness and sorrow, successes and failures.
I keep reviewing my values after each hardship and I try hard not to let myself down for my sake and the sake of my loved ones.
Bon Courage. Good Cheer. You will succeed.