Susan's Story: From a Caregiver's perspective

Susan's Story: From a Caregiver's perspective

In late summer of 2012, I (Susan) started to notice changes to my 53 year old husband (Roger), an active and hardworking guy. Gradual changes of apathy to the things he loved to do. He absolutely loved umpiring locally and nationally and was very involved in a regional hockey board. He enjoyed his job as a heavy equipment operator. He started to talk about quitting the things he had been passionate about. I attributed that to a mid-life crisis. An introvert by nature he got even quieter and started going to bed a lot earlier than what was his norm. I thought he was depressed and encouraged him to talk to his Doctor about it. I also started noticing his driving habits. Always the best driver, he began tailgating and being impulsive.  This came to a head when we were involved in a car accident in early December. Fortunately we were not hurt. The roads were icy and he did not allow for enough stopping time so we ended up on the top of a pile of decorative rock. 

I thought maybe a winter vacation could be the remedy for what was going on with him and he decided we should go. So in January 2013 we went to Mexico. It was at that time that he was having issues with his left shoulder and arm which I attributed to his job and the fact that he was always going to the chiropractor. He didn’t really want to engage in much activity while we were there either. When I look back at our pictures from that trip I realize that there are very few that he is actually smiling. Again, not him. Later that month, when we returned from our trip, he saw his chiropractor and she suggested an MRI which he never told me about. One day I was returning home for lunch and noticed the fire department and police attending to an accident, only to find out it was my husband. He had been driving a loader from work and hadn’t stopped at the intersection, clipping a semi-truck on Main Street. Again this was not him. He never had accidents, never mind two in two months. Fortunately, he really was not hurt, but in order to return to work he had to see a Doctor. On February 9, 2013 he went off to his appointment with me encouraging him to speak to the Doctor about all that was going on. A CAT scan was completed that day and by 8 p.m. that evening we knew he had a brain tumour. 
 
The days that followed involved a hospital overnight, an MRI and on Valentine’s Day a meeting with the neurosurgeon, where he was diagnosed as a non–malignant meningioma compressing his brainstem. Surgery was set for June when the new intra operative MRI was opening at HSC Winnipeg. His health started spiraling downward; from not being about to use his left hand, to balance issues, and falling down all the time. Resection surgery was completed on April 2013. They could only remove 1/3 of the tumor due to the location wedged between a main artery and his brainstem. 
 
What followed in the next 20 months was 30 treatments of radiation, 4 hospital stays and 2 rehabilitation programs. He was discharged to come home in December 2014. He is disabled and has many issues caused by the brain tumour.  I am now a fulltime caregiver. We now know that location is everything when you have a brain tumour as space is precious in your head. Everyone’s journey is different. A brain tumour takes away more than your health. It has changed our whole life. 
 
Susan and Roger at 2014 Spring SprintDuring his first few months in hospital our daughter learned that the Brain Tumour Foundation of Canada holds a walk each year to raise awareness, funds and support to survivors. We immediately got involved. The Spring Sprint (now Brain Tumour Walk) in June of 2013 was his first time out of the hospital. Prior to that I had contacted and received materials from Brain Tumour Foundation of Canada to understand what we were facing and to learn as much as we could. I also signed up for various online and Facebook support groups. I have connected with many folks who are on the same journey as us. Our medical team has the knowledge and we trust them, but we wanted to connect with real people who are living the life we are. Team “Roger’s staches” have since walked in 2014 and 2015. We will continue to do this.
 
During our diagnosis, surgery, treatment and hospital stays it came to be that we actually knew people from our small community of 1,700 who were journeying the same life as us being diagnosed with a brain tumour. It’s a whole new story when you can put a name and face to a brain tumour. So we have had opportunity to come along side these folks and walk with them to ensure that no one walks alone.
 
Roger at Spring Sprint 2015Both of us have spent our lives volunteering in our communities in various forms and as much as we love to be back in a heart beat this is now our new normal, being a friend to those who need a listening ear, love and support in whatever way we can give it.
 
In October 2015, Roger was given an award for all his years of volunteering in Hockey by Pembina Valley Twisters. It is created to be given annually to a worthy volunteer and its named after him. So I asked if I could share and promote awareness with our own display (see picture right).
 
Our advice to others walking this journey is to never give up as miracles happen every day, and to live life one day at a time! Include others in your story as support is a huge part of surviving and thriving even with a brain tumour. 
 
Thank you to Susan and Roger for sharing your story
and for your support of Spring Sprint and Brain Tumour Walks!
Donate today!Your donation to Brain Tumour Foundation of Canada helps caregivers like Susan and survivors like Roger to know that they don't walk alone on this journey. Stop brain tumours in their tracks. Donate today.
Pictures:
Top: Roger and Susan at Spring Sprint 2013
Middle: Roger's staches at Spring Sprint 2014
Right: Rogers at Awareness Event October 2015
Final: Roger and Mick E. Moose at Spring Sprint 2015
 
Update: We are deeply saddened to share that Roger passed in January 2017. 

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