Rebecca's Story

Rebecca's Story

My story began a long time prior to me being diagnosed. I had been feeling all over unwell for quite some time (at least 1 1/2 to 2 years). Some of my symptoms were excessive tiredness, general lethargy, short blindness spells each and every morning when I first woke up, mood changes and irritability. I had been going to see my doctor on a regular basis and I was unable to give any specific issues as to where I felt sick but I just felt wrong. I had also been seen by a psychiatrist who advised me that there was nothing wrong with me. However I knew something was amiss.

I kept going to doctors and saying I didn’t feel right. Finally I saw a psychologist, and she picked up almost immediately that there was something wrong, however she did not tell me what her suspicions were at that time. She wanted to speak to my family doctor and have him request an MRI for me. She did speak to him and then I did go to see my family doctor on April 18, 2011, he was going to send me for an MRI, but advised me it would take up to a month to get the test. I was OK with that, and I was glad that something was finally going to happen.

As I left the doctor’s office I had a real funny feeling and weird things were happening to me. For instance, I was walking down a hall and I saw a closed door in front of me and I knew I was going to walk right into the door. In my mind I knew what I should do to avoid the door but I was physically unable to stop walking, walk around the door or open the door. In other words, I walked right into the door.

A friend was with me and she looked at me and asked me why I walked into the door. I didn’t have an answer so she helped me around the door and we kept walking down the hall. Not too much farther down the hall my right leg started to give out and I felt like I was going to fall. I grabbed the wall and asked my friend to help me, she looked at me and was quite worried and I remember her saying “Bec, what is the matter?”.

As I didn’t know what was the matter I asked her to get me to a chair or something as I needed to rest. Then I went blind, I couldn’t see a thing. Her response was to turn me around and basically carry me back to the doctor’s office. When we got back to the doctor’s office, the doctor took one look at me and was very concerned. He put me in a wheel chair and took my blood pressure and some other tests. Then he became really concerned. He did not want me to be alone and he had my friend take me to my parent’s.

Basically I had experienced a seizure in the hallway, and on the ride to my parents I was in and out of consciousness (more seizures). Thank goodness for great friends. I now realize that I had had some other weird occurrences prior to that day, but I never knew what they were. Now I know they were seizures.

Eventually my doctor did fill out papers for my Long Term Disability and in the papers he stated that he felt the tumour began in 2008. My friends and family began noticing changes in me in 2009. So this has been a really long journey.

By the time my friend got me to my parents she had called my doctor back and the psychologist who I had seen and they both advised her to get me immediately to the Health Sciences Center hospital in Winnipeg. Needless to say I don’t remember her making these calls.

Anyways, when we got to my parents she advised me to stay in the vehicle, which I thought was very weird because I remembered that I was supposed to be going there to stay. She went in the house and came out with my mother and then they told me where we were going. I couldn’t believe that I needed to go to the emergency at the hospital.

When we got to the hospital, I had been advised that the security personnel came up and talked to me (I don’t remember), and then in the emergency waiting room I had another seizure when the Triage Nurse was talking to me. I guess having the seizure right there was a good thing, as I was given the next available bed in the emergency. I was so glad as I was exhausted and all I wanted to do was go to sleep. They gave me a hospital gown to put on and I got into the bed and immediately fell asleep. A nurse eventually brought me some medication and I continued to sleep. Next I remember them taking me for either a CT Scan or an MRI and then they brought me back to the bed and I went back to sleep.

Not too long after that a doctor came into my little room and advised me that I had a very large brain tumour (he said 10 cms). This shocked me and I couldn’t believe that I had a tumour. I wanted to know what was going to happen then, and he said I didn’t have to do anything as there was only one thing they could do. He advised me I would require surgery. I asked what kind and he said we wouldn’t get into the details at that time. He then left me and I lay there terrified, I had been scared my entire life of having a brain tumor. And I get one, what are the odds of that? Considering that I now know how rare brain tumours really are.

Not too long later, they moved me to a semi private room and I was then able to sleep a bit better as it was quieter. Over the next 2 1/2 days I received 4 more tests (CTs and MRIs). On April 21, 2011 I was taken into emergency surgery at noon, it was all such a whirlwind that I really didn’t have time to comprehend what was happening to me. Now I am glad that I didn’t really comprehend what the surgery was going to entail. I was never actually told, until I had done some reading afterwards and read about 3 different types of surgery. I was able to determine which surgery I had and when I asked the doctor I was then told that yes, that was my surgery. It was a craniotomy.

The surgery was very invasive (5 1/2 to 6 hours) and I was in pain and discomfort afterwards, thank goodness for some good pain medication. It took a while for the nursing staff to find the proper pain medicine for me so that I actually felt better. I had some hallucinations when I was coming out of the anesthetics (horrible), and finally we determined that I needed Ibuprofen (Advil) to relieve my pain. This was after trying all other options first.

One of the most painful parts of the surgery was the incision from ear to ear across the top of my head. When I woke up from the surgery, I had drainage tubes coming out of the right side of my head and staples from ear to ear. It looked like I had a pretty silver headband. And, the doctors had not shaved any of my hair off. I was glad of that. I had great care from all medical staff before, during and after my surgery. I was advised that they removed 6 cms during the surgery as they did not want to harm me in any other ways. I do thank each and every one of them for that as when I woke up I instantly knew I felt better and I felt like I had been released from a clear plastic box that I had been trapped in.

After surgery I had to wait for the pathology report to determine what type of tumour I had. I prayed that it was benign, however now I realize that a tumour in the brain area is bad no matter what type of tumor it is. During this waiting period I had the drainage tubes removed (very painful), head re-stapled after the tubes were removed (even more painful), swelled up like a balloon in my face (uncomfortable). I have learned so much this past year, about stuff I would rather not know. I stayed in my room in the Health Sciences Center until the date that the report was received. On that date, I was moved to the Rehab Hospital. That was the beginning of my 2 month stay in the Rehab Hospital at the Health Sciences Center.

As soon as I was settled into my new room a Radiation Oncologist came to see me. I knew when I saw him and his title that my report did not contain good news. He advised me that I had Atypical Meningioma. I knew right away by that name that it wasn’t good news. I made him write it down for me so I could read more about this type of tumour. He also advised me that he would be setting me up for radiation treatments. He was unsure of the number of treatments and the number of points of treatment I would receive. He had to study my results and my MRI report from immediately after my surgery. He said he would be meeting with me regularly up until the radiation began.

So here I was scared again, but thankful that I didn’t need chemotherapy. The nursing staff were very kind to me and answered any questions I had and I had also been provided with a Social Worker that was able to bring me many books and pamphlets for me to read. I read up on my specific tumour and learned more about it and that it was actually in the lining of my brain (the meninges). Eventually I was taken for a consultation with various people: radiation oncologists, nurses, radiation technicians etc. It was at that time that they started talking about 7 points of treatment and they were still debating about the number of treatments required. They spoke about 30 sessions, 25 sessions, 28 sessions, 30 sessions and finally advised me that they would have the final determination prior to me starting treatments. So again I was in limbo and wondering what was going to happen to me.

It didn’t take too long for a final decision and that was that I would have 4 points of radiation and 28 sessions. It sounds like this took some time but it didn’t really take that long now that I look back. I was moved to the Rehab Hospital in early May and my radiation treatments began on May 23rd, 2012.

Some of the information that I was given involved some of the side effects: I could possibly lose some hair, I could possibly lose all of my hair, my hair will grow back, my hair may not grow back, my hair may come back a different color/texture/thickness etc, my skin would get burnt the further into treatments I went, I would start to get very exhausted around the 2nd week of treatments. This was all so much to take in that I really didn’t know what to expect.

Anyway, as I had already been losing some hair around my scar – I was advised that this was due to the medications I was given during surgery and trauma to my head – I decided to cut some of my hair off. My head hurt a lot after surgery and my hair was fairly long, combing it after surgery hurt a lot too. So I went to the hair stylist in the Health Sciences Center and I explained to her what I had been through and what I was going to be going through and she was able to cut my hair in a very cute style. It was much shorter and she definitely knew what she was doing as when I did start to lose hair the way that she cut my hair you couldn’t see the bald spots unless I specifically showed them, however I knew how much hair I did end up losing. It was quite a devastating thing. I’m sure most women feel this way. Just so you know now, over a year later, my hair is growing back, it came back much darker than my hair originally was and I have a lot of hair growing. So overall I am very happy with that end result. During the time when I didn’t have all my hair I did wear a lot of hats, scarves, turbans etc, and I learned how to make them all look very cute. Sometimes now I will wear some of them because I have come to really like them.

In regards to the skin and the fact that radiation could burn the skin, that is very true. By the end of my 28 sessions my forehead and front part of my head were beet red and so painful. I had read that a cream that contains glaxal was good for the burned skin. I asked the nursing staff and the radiation technicians for this cream and they did not have any. The nursing staff brought me a different cream, it felt good but it was easing the burning. Then one of my friends went to Shoppers Drug Mart and bought a glaxal cream and what a difference. So for other people ensure that you have the correct cream, it makes all the difference.

Now the extreme exhaustion, it started for me right on day 1. Each and every day after treatment I wanted to go to bed and sleep for a couple of hours. The sleep did help to make me feel more alert and better. I did find on days where I was unable to get in a good sleep during the day that I was going to bed very very early. Sleep is so very important when you are going through this type of treatment.

When I had my first MRI after the radiation and my appointment with the Radiation Oncologist, he advised me that there was about 4 cms of tumor left, as the radiation had shrunk my tumor by about 3 cms. I was very confused as I had originally been told that my tumor was 10 cms. He then advised me that my tumor had been over 13 cms. Okay, that was a shock. I knew that I had an extremely large tumor, but I didn’t realize how large it really was. I feel so lucky to be able to tell this story and to be alive today.

I have continued to go for regular MRIs and to date all is good for me. I do still have just over 4 cms left but at this time it is dormant, and I was advised at the last MRI that it was calcified. I was told this is a good thing and it is currently unable to grow. I will continue to have MRIs, currently I am on every 4 months.

I am also still collecting Long Term Disability from work (as of now – August 2012) and I feel that this has provided me with the ability to heal well. I feel so good, so having the ability to stay on Long Term Disability is also a blessing.

Through this experience I have come to realize the importance of life, and I wake up each and every morning with a thank you. I even go to bed each and every night with a thank you. I have also had some very enlightening experiences and I feel very blessed for these. Overall my life now is better for this experience.

I would like to someday talk and discuss my scenarios with newly diagnosed patients and try to help them through some of the questions they may have. I realize that every person’s case is different but I feel I can help people with some of the basic questions and guide them to the professionals for other questions.
 


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