Jim's Story of Strength

Jim's Story of Strength

 

 

The challenges and rewards
of living with a brain tumour.

“It is my sincere hope that my story might provide some useful information to brain tumour patients and motivate them to look positively at their situations.”

This is an abridged version of Jim’s story – he has written his story in his own words.
Read the entire, moving story here.

The story begins in early January 2009. It is the story of Jim, his wife Barb, his daughter Jeanna, his grandchildren and his community.

The impetus for Jim to share his story came in October of 2010 when one of the members of his Rotary Club asked him to share his experience of living with a brain tumour. He says, “I wasn’t sure that anyone would be interested in what I had to say. It turned out that people really did care.”

glioblastoma survivor jim and his storyOn January 7, 2009 he got up from his desk at the municipality office where he served as a county manager for more than 30 years. He was headed to a doctor’s appointment for what he thought was a persistent sinus infection. Jim found himself losing his balance, bumping into walls and tipping over, before long he was headed to the emergency room. He recalls, “Barb met me at the doctor’s office and she has literally never left my side since.”

Because of his symptoms Jim immediately underwent a CT scan which revealed a growth about the size of a golf ball in his brain. He was admitted to the local hospital for observation, and to wait for more consultations and an MRI.

While I was waiting in the local hospital to go for the scan, his daughter Jeanna came into the room carrying some kind of black device. Jim remembers, “I was bored and she said we could use it to hear our stomachs rumble which should be entertaining.” Jeanna went first and instead of rumbling, the speaker played a fast and rhythmic "bom...bom...bom...bom...bom". Barb started to cry.

Jim recalls, "I told her not to worry, that I was going to be fine," and then he realized, "That’s a baby’s heartbeat we are listening to! What a wonderful way to discover we were going to be grandparents and to help me focus on what is really important in life."

Soon they were told that Jim very likely had an aggressive type of tumour growing in the right temporal lobe of his brain. Immediate surgery followed was by radiation and chemotherapy. Jim headed into surgery on January 15, 2009, barely a week after the balance attack in the office.

The surgery was described as a success where they removed a large portion, but not all, of the tumour. The days following the surgery were filled with pain, headaches, disorientation, weird daydreams and the inability to recognize reality. “They were probably the worst days of my life so far. I thought I was dying and going crazy. Holding Barb’s hand helped me to get through those terrible days,” Jim remembers.

When thinking about that time and the impact on his family, Jim says, "The demands on Barb’s time and emotions were severe. It was a real challenge to monitor my meds, clean up after accidents, do my laundry, and to get me dressed each day. Buttons, zippers, pant legs and sleeve holes are all still a mystery to me."

After the surgery, Jim and his family attended a consultation with three doctors: a neurosurgeon, a radiologist, and a chemo oncologist where they were given a poor prognosis. Jim remembers, “That information hit both Barb and I like a ton of bricks and we both had a good cry. I was sorry that I had asked the question. Later on after much discussion and questioning, one doctor said that he was aware of a patient who lived for eight years after surgery I told him that we needed to work hard to become the new survival record holder starting immediately.”

Once the reality of the condition sunk in, the family talked a lot about what they could do help in the fight against the tumour. Some of the points they agreed to were:

  1. Listen to the doctors. Take their advice to heart and carry out their instructions promptly and to the best of my ability.
  2. Remain as positive as possible and refuse to dwell on the negative aspects. Refuse to be led into despair. Adopt an attitude of hope and positive thinking.
  3. Know your enemy. Learn as much as we can about glioblastoma multiform tumours and their treatment.
  4. Celebrate our victories. At this time I began to set benchmarks and milestones to be there for important events. The first was, of course, the birth of Jeanna’s baby. Elliott Adelle was born in June 2009. When you have been diagnosed with a terminal cancer, life and family events like birthdays and anniversaries become important milestones to strive to achieve.
  5. Focus and bring influence on the things we can influence or control, like eating a very healthy and cancer fighting diet
  6. Stay as healthy as possible so I will be ready to go when the researchers find an effective treatment for brain tumours, and so I can enjoy every day to the fullest extent while spending time with those who love me.
  7. Use the services of other health care professionals like physiotherapy, chiropractic care, and acupuncture and massage therapy.
  8. Trust in faith
  9. Live every day keeping in mind those who love you and striving to treat them with respect as loved ones deserving your time, attention and affection.

In addition to, and in support of many of these points, Jim and his wife have found information, support and hope through a number of opportunities offered by Brain Tumour Foundation of Canada including, the local Brain Tumour Information Day conference,  the Edmonton support group and the website BrainTumour.ca.

It is now over 44 months since Jim was diagnosed with a glioblastoma multiforme brain tumour. He says, “My life pretty much runs in three month segments, as I have an MRI every three months to determine if there is any change in the tumor. Since January 2009, every three months I have heard the beautiful words “no new growth”.

In July 2012 Jim celebrated his 60th birthday with about 40 close friends and family sharing a feast and a lot of storytelling. In his comments to those present he spoke of the three pillars of survival that form the foundation of dealing effectively with his brain tumor: faith, hope, and love.

He says, “Every day is a challenge and every day is a blessing.”

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 Story posted: October 2012. Since then, Brain Tumour Awareness Month has moved to May.


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