On March 18th of last year I was diagnosed with a brain tumour and it was life changing. I believe that no one should hear the words “you have a brain tumour”, but it will probably continue to happen. Which is why it is so important for me to support organizations like the Brain Tumour Foundation of Canada that help those of us unfortunate enough to have heard those words.

This is why I’m fundraising for Brain Tumour Foundation of Canada. Patients and families need information, support and education. We also need more research. There are too few treatments for this disease and survival needs to be improved. Continue reading →

I have been writing about my experiences living with a brain tumour and the surgery to remove a brain tumour for 5 months. On March 18th of this year I was diagnosed with a meningioma that I promptly named Timmy. It was a long couple of months of patiently waiting to see what the next step would be. There was always a next appointment, another scan, or test. It was a process that seemed like an eternity but really it was less than 8 months from the initial head pain that sent me to the doctor until the surgery to remove the tumour.

Timmy was removed on August 7th. On August 12 five days after surgery I was released from the hospital. The recovery thus far has been so fast in comparison to all of the waiting pre-op. When I first got home I spent the better part of the first couple of days in my pj’s resting. My lovely parents were here with my husband to take care of the kids and I so I actually got to rest.

Flying a plane with Grandma

Bedtime stories

Fishing from the boat aka the stair landing

Beach with Grandpa

I was told before surgery that I could expect to be sensitive to light and sound after surgery, and I was very sensitive to light for a few days. I am still sensitive to sound 2 weeks later. The surgeon advised that it could take 4 weeks until my hearing went back to normal. My son was crying the other day and I couldn’t tell where he was, I went looking for him in the house only to discovery him outside. I am not hearing everything with an echo anymore so there is defiantly an improvement. I can tell that my hearing is slowly coming back, but it has been a bit of a process.

Thankfully I am no longer dizzy when I stand up or when I walk because that was beyond annoying. We live in a two-story house and for a while I was gripping the railing for dear life. I am pretty happy that phase is behind me.

The bruises are almost healed. In another week I suspect that you won’t be able to see all of the places that I was poked for IV’s. The spot where I had the central line in my neck is still noticeable and I am going to guess that I will have a scar once it is totally healed. For the better part of two weeks I had a lovely bruise on my neck that looked like a hickey and then my neck bruised all the way to my collar-bone. Very attractive.

The staples that were holding the incision together were removed exactly one week after surgery, and then I got to wash my hair. It was a very exciting day even though I needed a spotter in the shower. I still wasn’t very steady and it was a long process to wash all of the surgery crud out of my hair. It has never felt better to wash my hair because it was crusted to my head.

With staples

Staples coming out

No staples

2 weeks after surgery

They like tape in the hospital. For days after I was home I had tape residue all over my body. Most of it was a mystery. It’s like the crop circles of surgery. Why on earth was there a tape square on my belly?

There were a few surprises in the process besides the ECG pads and tape that I found still adhered to my body days after surgery. I didn’t realize that my hearing would be so impacted. I didn’t realize that the central line would cause my neck to be so sore for so long. I didn’t anticipate that my right hip would be sore when I woke up every morning because I am not moving in my sleep, I am only sleeping on the side of my head that wasn’t cut open. I have had some digestion issues as a result of the diet and medication that I didn’t count on. I was shocked that my leg muscles became total mush in the three days I was in bed. But most importantly I didn’t think that I would heal so quickly. I really thought that I would be medicated, in bed and dizzy for much longer than I was. In about 10 days I was off all medication. Within three days of surgery I was up and walking around and the dizziness lasted for about a week.

Now two weeks later I am up and about. I can’t drive yet, bending down to pick up Lego is on the “Do Not Do” list and I will not be scrubbing floors in the near future but other than that life is slowly returning to normal. In the midst of all of the brain tumour madness I received the news that I passed all of my exams in July and successfully completed the Graduate Certificate in Business Administration, the first step in the pursuit of a Master’s Degree in Business Administration. In the same week I received a call from the neurosurgeon’s office that my pathology report had come back and that the tumour was completely benign (which the surgeon had told me) and Grade 1 (which is the most common type of meningioma and it is unlikely to grow back). Three years ago also in August I had my second child and graduated with a Bachelor of Design in the same week. At the time I didn’t think that I would ever have a week like that again but last week was a close second.

I will be resting for the next two weeks in preparation for the start of a new school year. My oldest goes back to school, my youngest starts pre-school and I return as a graduate student. Just because he doesn’t want to be left out my husband will resume flight school. Here’s to the last two weeks before we all get back to school because it might actually be like a summer vacation.

Out for lunch

Out for a walk

After I was transferred from ICU to Close Observation following the removal of Timmy (my previous brain tumour) there wasn’t much to do for entertainment. For the first day or so I was resting with my eyes closed, I found the lights too bright and it was a little hard to focus. I wasn’t able to read, or talk for long periods so I would just lay there and listen. My husband was by my side when visiting hours would allow but he’s pretty quiet and he just let me rest.

Being that my only real source of entertainment was the action happening in the close observation ward I listened, and listened, and listened. I was in the ward with three other people but with nursing staff, visitors, doctors, housekeeping, food services it was a hot bed of activity.

Neighbour J

The neighbour to my right was a 17 year old surfer stuck in the body of a 27 year old diabetic alcoholic that broke his back in a car accident. He was in the hospital to stabilize his back, blood sugar, and to detox before surgery. He was having some pretty crazy hallucinations, yelling out in his sleep, and was forever confused. We both had to answer the same questions everyday:

• Do you know where you are? His answer Philadelphia
• What month is it? October
• What year is it? 2005

Considering that we were in the hospital in August of 2015 he was a little out of it. I also learned that he just moved here from Ontario, and Niagara more specifically which is where I grew up. He had a huge suitcase with all of his possessions in the hospital because he didn’t have anywhere to live yet. He was forever trying to get out of bed, and the nursing staff had to keep a very close eye on him. His mom would call daily to learn of his condition, and I couldn’t help but think about my own kids and how scary the situation would be if that was my child lying in the hospital far from home. As his surgery got closer I could hear how scared he was getting. The nursing staff was trying to reassure him that it would all be ok but he I could still hear the anxiety in his voice.

By this point I had nothing but empathy for the kid because I had also panicked about my surgery. So I asked the nurse for a pen and paper and I made him a card. On the front it said “You Got This” and on the inside I wrote him a note about my experience. He went off for surgery and returned later the same day. He was in a lot of pain but he was on the road to recovery.

Neighbour M

My neighbour on the other side was an eldery man with teenage grandchildren he also had a broken back and pneumonia. He couldn’t speak and was having a hell of a time being understood. He was asked to write out what he was trying to communicate but was struggling to make the words legible. He asked for water constantly but wasn’t allowed to drink. When he needed something from the nursing staff he would bang on his tray table. He needed to cough and have his throat suctioned hourly (which was a pretty gross sound) and it probably hurt like hell.

I listened as his son did an amazing job advocating for him. I listened as his daughter in law lost her patience and became a total bitch. I listened as his grandchildren told him about their days. I listened to the nurses, doctors, and respiratory specialists day after day try and help this man, some with more patience than others. One doctor who treated this man was truly wonderful, he was able to communicate in a way that no one else was able to. He seemed to be able to understand the mans writing and gestures. It gave me a sliver of hope for the patient.

Because I was in the position to listen all day every day I began to understand what the man was trying to say. When he wrote electr…… and the nurses guessed electricity (and then tried to make sense of electricity) he was really trying to ask about his electrolyte levels (which had just been tested). It was hours before someone figured out that he was asking about his electrolyte levels because most people saw a man that couldn’t communicate and unfortunately saw him as confused. I came to realize that he was intelligent, and he really wanted to get better.

What I noticed was that he would start trying to explain himself to one person and very rarely did anyone have enough time to figure out what he needed. So he would continue where he left off when the next person came in. The trouble with this is that no one listened to everything he said and it took forever for them to put the pieces together. His son was really great as was one of the doctors, but everyone else could have listened harder. By the third day I could understand him and his method of communication, and from the one sided conversation I could guess what he was asking and would occasionally shout what I though he was trying to say.

The morning that I was moved to out of Close Observation a doctor came in and told him in no uncertain terms that he was going to die. He was getting worse, and they couldn’t seem to get the pneumonia under control. They asked if he wanted to go back to the ICU, but they also said that there was a pretty good chance that the ICU wouldn’t take him back. My heart was breaking for this man who was really fighting to survive.

Neighbour T

When I left the close observation unit I was moved into a semi-private room with another patient. She was a 52 year old healthcare worker that had just under gone back surgery and was simultaneously quitting smoking. She had a morphine pump, and was mobile with assistance. I learned that she had become a single mother when her husband passed away when her daughter was 5 months old. I learned that she had to bury her first born grandchild, and her teenage niece. I can’t even image how difficult life has been for her.

She has a great sense of humour and an excellent outlook on life. We got along instantly, and because I was slightly more mobile than she was I was able to get her ice packs and drinks from the bar (aka the fridge in the hall). When I was screaming out in the middle of the night she buzzed the nursing staff to check on me (which I have no recollection of) but I have done it at home since so I am sure that it probably happened. During the day we laughed so hard that it hurt both of us, it was like a sleepover party for the injured.

I also learned although she didn’t specifically say it, that she has never had much money. She mentioned that she had always wanted to buy a house but couldn’t, and that she had only been on vacation out of the country once. She described her apartment building as the worst one in the city and I knew exactly which one she was talking about. Yet both she and her daughter love people and choose to work to help others as healthcare workers. She is truly an inspiration.

Lessons from Timmy

Had I not been diagnosed with a brain tumour and gone through with the process to remove it there is so much that I wouldn’t have learned. I have never been very compassionate, I have always struggled to be empathetic, I am not the best listener and even though I practice patience I still get frustrated easily. This experience has taught me how important it is not to judge others, we are all humans doing the best we can with what we have. I have learned how to be more compassionate, how to be quiet and listen, and the importance of patience. Timmy is gone and in the process I have learned so much about myself, and my husband which I am truly grateful for. Timmy is gone and now I can continue on with the lessons I have learned. It wasn’t easy but it was worth it.

Before I could be discharged from the hospital they needed to make sure that my pain was manageable without heavy narcotics. To be honest I was a little worried about where they would move me to because I had been out wandering the halls of the Neurosciences ward and it was pretty scary out there. The hallways were lined with wheelchairs that belonged to the residents of the floor. Everyday there was an elderly woman parked in the same location regardless of the time. One person had decorated their room with pictures, and another moaned all day. It was all a little depressing. I was also concerned that I would be in a room with elderly men cause that would make me uncomfortable. I had learned at my pre-admission appointment that the ward rooms were co-ed and had been worried about it ever since.

Last day in the hospital

bruises

Fortunately for me I was given a semi-private room with one other woman. She was lovely and I will tell you more about her in another post. When I was moved I walked from one room to another while my husband, youngest and the nurse moved my furniture and belongings. I no longer had anything but band aids and staples attached to me and it was wonderful. I decided it was time to take a shower but I still wasn’t quite 100% sturdy on my feet so my husband was nice enough to help me. It’s pretty humbling as a grown woman to get someone else to help you put on your underwear. Thankfully it was just once but it made me think about how much of my health I take for granted.

My mom had come to visit and I decided that I was ready to go outside. Neuroscience was on the sixth floor so to get outside we needed to take the elevator. When we got off on the main floor there was a huge lineup for the elevator being that one was out of service and there were only two to begin with. At the end of the line I saw a woman that was about to give birth. Even in my semi-drugged state I realized that she should have been moved to the front of the line. I asked her if she was in labour even though it was clear from her sweaty red face. She said she was going to take the stairs and my mom pointed them out. I was making a small scene telling her and everyone that could hear how rude people could be. I suggested she flag down a porter pushing a patient in a wheelchair because he could probably get her into the service elevator, and about 10 minutes later my mom went up the stairs to make sure that she wasn’t having a baby in the stair well.

The following day I went for a longer walk and tried the stairs for the first time. I made it one flight when my husband looked at me and suggested the elevator. I was still experiencing quite a bit of dizziness because the tumour was removed from the part of the brain that controls balance. I needed a little lie down after our adventure outside, it was a little sad.

My doctor had been in the day before and said that I might be able to go home on August 12th. He also said that he was going to be going Salmon fishing for the day with friends from out of town but if I was ready to go home I should have the nursing staff call him. They did call him and at 8 pm I was released. I was so happy to get out of the hospital and it was time.

We had to stop at the drug store on the way to get my pain prescription. My hair was crusted to my head, it still had iodine and blood in it plus 6 days of dirt. But I couldn’t wash it until I got the staples out. I thought that I would have the worst hair in the store but no, there was a young guy there that had just dyed his hair blue, and his neck, shirt and belly. No one was staring at my dirty hair, band aid on my forehead or train track staples in the back of my head.

When we got home the kids were waiting for us in bed. I was still pretty sensitive to noise, and we talked about making sure not to yell in the same room as mommy. But then the kids asked things like, can we talk? can we play trucks? what if I have a nightmare can I call you? and the rules were tossed out.

After spending 5 night in the hospital I was so happy to sleep in my own bed I made myself right at home.