If I Only Had a Brain


If you are new to my blog, I feature brain tumor survivors on my blog on Thursdays.  You can read more about this feature and archived posts here.

It is my pleasure to introduce you to Amanda.

I hope….

That in life, I will touch many people hearts and help to make a difference in someone’s life.

If I Only Had a Brain Foundation is a non-profit Amanda founded

I wish…

That someone will find a cure for cancer and be able to detect it early on in life.

I dream….

To open my own camp for children and families with children suffering from brain tumors and epilepsy.

I am…

A lover. A person who’s life goal is to help people and to make not so good situations better.

I am a 24 year old who needs to make a difference.

Diagnosis and Treatment…

I was diagnosed with a pituitary tumor when I was 20 years old, one that was treated with medications for about 3 – 5 years. My tumor effected everything; my mood, my life, my dreams and ambitions. It consumed me and made me a completely different person. In March of this year, I was no longer responding to medications and sought out a neurologist to find out my next option.

I had two MRIs in 3 weeks in which my tumor trippled in size. I was referred to a neurosurgeon and the following week was in surgery. Luckily for me, I did not have to have a craniotomy. My surgery was done all through my nose (endoscopic skull base surgery) at New York Presbyterian Hospital by Dr. Theodore Schwartz.

I had a few complications –learned that I was severely allergic to the anesthetic, as well as morphine and ended up with a cerebral spinal fluid leak at my surgical site, as well as where they had done an epidural. I was in a coma for almost a full day where I was in the ICU and then moved to the neuro unit. A week after my surgery, I had to go for a blood patch to fix the leaks, which landed me on bed rest for a month and a 1/2.

While on bed rest, I decided to start my own non profit organization called  If I Only Had A Brain Foundation.

If I Only Had a Brain Foundation

My goals with the foundation are to open a summer camp for children with brain tumors and epilepsy that is focused around art, music and sports; all with theraputic techniques involved. I am holding my first silent auction and benefit dinner September 16th at the Olde Mill Inn in Basking Ridge NJ. All are welcomed. Tickets are $85 please email me (IfIOnlyHadABrainFoundation@gmail.com) if you are interested and would like to share your story! All of this years proceeds will be donated to Dr. Schwartz’s Brain Tumor and Epilepsy research and clinical development fund! Help me help others like us!!

I Wish Luck For All of You


If you are new to my blog, I feature brain tumor survivors on my blog on Thursdays.  You can read more about this feature and archived posts here.

It is my pleasure to introduce you to Jill.

I hope…

I hope I can at least be around to meet all of  my niece and nephew’s children. Since I was unable to give my wonderful husband a child, our niece and nephews have always been dear to our hearts. We think of my sister’s children as our own. My sisters have done a great job in the kid department. We have one niece that has started her beautiful family, so we already have the titles of great Aunt Jill and great Uncle Barry and we love every minute of it.

I hope the doctors of the future are taught about compassion and how to use it when it comes to treating patients. I haven’t seen an abundance of compassion, the past few years. I also hope that someone in the medical profession figures out how to treat a gangliocytoma, when it is located in a not so easy spot to deal with during brain surgery (without causing brain injury). I hope that the world continues to grow into a better place to live.

Jill and her husband, Barry

I wish…

I wish happiness, health, love and well-being to my family.

I wish luck for all of you. I wish family could understand I cannot be the person I was before I had the tumor resected, but I can’t. I wish my mother didn’t look at me as if I were dying every time she looked at me. I wish I could talk to her about problems I am having due to the tumor with her, without her breaking out into a flood of tears. I wish the political part of our world was in better shape. I  also wish for a boost in our economy daily.  Hopefully, there will be a jump in that very soon. I don’t like to see so many people hurting.

I wish Dr. C would have told me about the brain in a different way. We were in his office for a back/neck problem to discuss scans he had ordered when he stated ” By the way, you have a brain tumor you need to have checked soon!” Barry and I were dumbfounded as we drove home. This date in January 2009, lead to 3 month search for a physician on our insurance, in Georgia, that did brain surgery and had heard of the lovely tumor in my cerebellum. Dr. O was the 39th surgeon we located and and only the second office that I managed to get past the clerk in. He was a God-send.

I dream about…

I dream about growing old with my soul-mate. Curling up with our pup for a nap on the couch. I wish that pup could be Maggie, but I’m not ready to go anywhere yet. I hate to say this, but I hope to out live her. If I don’t, I’m sure she will take good care of Barry. She is such a loving little lady.  I dream about Frank, my step-son, turning into the man Barry and I both know he can be.

Jill’s pup, Maggie

I am (be)…

I am me, Jill Elizabeth. Nothing more, nothing less. I am a woman with a wonderful husband and family. I am not the genetic tumor in my head or the “academic exercise” a doctor recently referred to me as in an email. I am a thriving, busy wife! I do not like to sit still. I will admit though, lately I am what my body lets me be.

Jill

Diagnosis and Treatment

I was diagnosed Gangliocytoma in April 2009, had a craniotomy for resection on April 9, 2009. Four days after my fifth wedding anniversary.

Favorite quote

“If it is meant to happen, it will.” – author unknown

Three things about me

I believe in ever-lasting love. I love to garden, I still get out and about when my body lets me and I love Sponge-Bob.

Barry and Jill — everlasting love

***

If you would like to contact Jill, you can reach her on Twitter at https://twitter.com/BarryJillBaynes (@BarryJillBaynes).  You can also leave a comment for her here; she will be reading the comments.

If you would like to submit your profile for Brain Tumor Thursday here, please email me directly at memomuse@gmail.com or you can check out the information page and read past archives.  Caregivers and loved ones are welcome to share their profile too, following the same template. #BTSM and #BrainTurmorThursday is a wonderful community reaching around the globe with out stretched arms and love.

An Olympic Torch of Hope: A Tumor’s Travel Tale


If you are new to my blog, I feature brain tumor survivors on my blog on Thursdays.  You can read more about this feature and archived posts here.

Claire is a gold medal winner in my opinion. She carries a torch of hope and inspiration.

It is my pleasure to introduce you to Claire Bullimore.  She lives in London.

Claire

I hope….

One day there will be a cure for brain tumours.

I wish…

I had more help when I was diagnosed by a brain tumour when I was 23 in 2008 and had more rehabilitation.

Claire’s MRI

I dream…

I can make a difference in the lives of people around the world affected by a brain tumour through Aunty M Brain Tumours.

Claire and her mum

I will be…

Publishing my own book, Diary of a Brain Tumour Survivor: Started as a Girl & Ended as a Woman, at the end of the year.

Claire after surgery

Favorite Quote…

“Experience is not what happens to you; it is what you do with what happens to you.” ~ Aldous Huxley

Excerpt from Claire’s book:

***

My Story

By:  Claire Bullimore

London

Aged 29

On Wednesday 21st May 2008 I was diagnosed with a brain tumour. My story is this….

In 2007 I was working in Dresdner Kleinwort — in the city. I was living the high life earning good money and had a great social life.

One morning in April, I was on the train during the rush hour to work. One minute I was there looking out the window and the next I had fainted.  Two men helped me to get off the train and onto the platform.

One of the men said, “You may have an iron problem.”

I thought, “Yeah, that must be why.”

The other man said, “You might be PREGNANT.”

I laughed and said, “Not unless it was by Immaculate Conception.”

All of the passengers and the train driver were looking out the windows wondering what was going on. I was so embarrassed; I just remember thinking, Hurry up and drive off!

I called my mum and asked her to pick me up and take me to the doctor. The doctor gave me some iron tablets.

I seemed to be doing OK after the fainting scenario. But one weekend in August 2006, I was driving down to see my boyfriend in Reading and was meeting his dad for the first time.  It took me around four hours to get there as there were huge traffic jams. While I was sitting in the car my eyes went a bit funny. It was like I had shut my eyes but they were open and I thought that I just needed to stand up for a bit. I noticed that my hands were shaking and thought I was just hungry.

Eventually, I made it to my boyfriend’s house. I was trying to seem relaxed when I met his dad. We went to a pub, but I couldn’t hear anything people were saying. At times like this, you really want to make a good impression on the parents and not look too crazy.

After that weekend, I took a two-week holiday to see my brother in Sydney to relax.  I was still noticing my hands were shaking and I was starting to get a real temper for no reason.

After fourteen days, I said goodbye and came back to London.

In September 2007, I was sitting in the office and we were all going out for a big ceremony.  I said to my supervisor that I wasn’t feeling too good and that my vision was a bit strange. I thought I should go home. She said it was really important to be there so I just put up with it. My vision was getting worse as the night went on. It was just like having tunnel vision, my head in a box and all I could see was through a small hole in the front.

On the Monday my boss pulled me to the side and asked, was I happy at work? I said yes, but my headaches were getting worse and I was taking migraine tablets frequently, but they weren’t working. My boss said I should go back to the doctor as there was obviously a problem.

I went to the doctor first thing the next day who suggested stress and to take a week off work. I was beginning to get depressed. I felt I had let my work down.  I even left my church because I was frustrated at everything.

As the days went by, more things were happening. I was being a pain in the back side and rude. I really couldn’t understand what was wrong with me. I am the least stressful person who never gets into arguments.

Back at work, I was really emotional and stressed all the time.  In November, I spoke to my boss and said I thought I was not meant to be in that job as I was really unhappy and resigned.

After I left I went to Dubai to visit my boyfriend’s parents out there.  I thought that it would be a great opportunity to get away and have a new start when I came back.

Once in Dubai, I found it hard to relax and was wondering what was going on in my head. I was scared.

One day we woke up early to go with Will’s mother to visit her company. His mum was the Head of Nursing in Dubai at the Canadian Hospital. While we were waiting to meet her, we went outside for a bit, and I knew that I didn’t feel right at all.

As we were walking back into the hospital, I felt so sick and faint. I was trying so hard to relax, but I knew what was about to happen AGAIN!! The next thing I know, I was on the floor with Will trying to pick me up in one arm and holding all our bags in the other.

I was so embarrassed, but thankful I was at the hospital already and with Will’s mother being the head of Nursing, I was really well looked after. They took a lot of blood. I was so not enjoying myself and fed up. I just wanted to go under a rock and hide.

I had spent some of the holiday emailing employment agencies regarding new opportunities. When I got back, I took a job with Petro-Canada in London. The job was going great, things at home weren’t. I realised my memories and my recollections of everything were starting to disappear and I was feeling so helpless; I couldn’t separate my thoughts and was constantly angry inside. It was terrifying. I was scared.

More strange things were happening day by day.  Around Christmas, I was at my worst. I started waking up in the middle of the night and having the most agonising headaches. I had never felt anything like it. It was like somebody was grabbing my head and slamming it against a concrete wall. I tried the usual tablets, but it wouldn’t stop. I could only cry and pray that it would stop soon. I was in so much pain, I would be sick. Night and day were just as bad as each other. I would dread waking up and just hoped that if I could get up early enough, the pain would go before I went to work.

At the end of April my parents went to Australia to see my brother in Sydney, I said goodbye in the morning and then went to work.  I didn’t really want to tell them of all the strange things that were going on as I didn’t want them to worry when they were on holiday.

My memory was getting worse and I couldn’t even remember if I had eaten meals. I was finding it hard to hold a conversation because I would forget what we were talking about.  I looked like I was just tired, but I knew it was something else.

One Saturday, I went out with my friend to Brighton but I could feel a headache coming on. I gave my car keys to my friend and said she should drive us. I had done that trip a million times but when I directed her to what I thought was the easiest route from home. I realised I was in the middle of nowhere.

I had planned to have an early night, but I was just fuming. I phoned my friend and was telling them what was going on but I started talking gibberish. Words were coming out my mouth that weren’t even English.. I was really unsure what it was, but put it down to being tired and stressed as usual.  Things were becoming really scary. I didn’t know who I was.

On the Monday morning all of my bosses were going to a big meeting abroad, and would be away the whole of the week. I had arranged for my friend to come over for dinner, we watched a film called P.S I Love You.  This was a random selection. The film is about a young lady, whose husband dies from a brain tumour.  It really made me think about brain tumours and hospitals and just friendships.  I loved it, though I really didn’t know why because it was depressing. I watched it three times with different friends. I found the film really calming but I knew something was going to happen.

Tuesday morning.  I was determined to get to the bottom of the headaches, the shaking hands, bad moods and my eyes, just everything.   I was waiting for the doctor’s surgery to open at 08:30.

I drove down to the clinic and went in for my appointment.  I could feel that I was being rude, but I was not in the mood to be shrugged off like every other time. The doctor looked at the list of symptoms I gave her and she said, “I don’t know what is wrong with your vision, but it sounds like migraines. I knew they were wrong so I went to my optician and asked for a check-up.

I then went to the optician and a lady took some x-rays’ of the back of my eyes. The optician asked for a second opinion. I could see she had a problem and looked concerned. She said that she thought that it might be a cyst on both eyes as there was bleeding on the backs of them. She asked me to go straight to  hospital and said that she was going to call them to expect me. I called my friend to take me to the hospital as I couldn’t as I had dye in my eyes so I couldn’t drive.

I had a doctor look at my eyes after sitting for hours in the hospital. She said it may be a cyst and she would book me in to see herself and her boss the next morning. I thought I might lose my sight. It was very frightening. The first lady just didn’t know what to do for sure.

The next day I came in at 8 am and sat waiting for more tests. At 4:30pm I was walking out the hospital as I was told to come back the next day for results but a lady ran over and said “Hi, is it Claire Bullimore” I said “Yes”.  She said can you come back please. I went back and sat down waited for two hours.

I finally went in and saw the doctor, he then smiled at me and said, “I’m very, very sorry but we can’t help you. You have a very small percentage of recovery.”

He kept saying, “I’m so sorry,” all the time.

I was just thinking, “Yeah sure you are.”

He showed me the x-ray, “This is the tumour,” he said.

“Tumour”, I said. “Will I die?” I asked.

He showed the x-ray and I could see what he was referring to; it was huge and all over the place. He said it was so big that it could kill me any day if not removed/treated immediately.

I just sat there looking around the room trying to get my head around it.

“A tumour,” I said. He said he was surprised I had not been showing the symptoms a long time ago as it was massive and must have been growing for around ten years.

I said I had been telling my GP I had problems for years but they wouldn’t help me. He said he was going to get me a bed ASAP, that night and get me into surgery. I felt sick.

I just said “Wow, OK.”

What else can you say to that?

I  was operated on the 23rd May at 8am. Ten hours later, I came through the operation and had to wait a further few days to come round. I woke up and couldn’t speak, I didn’t know who my dad was and what was going on. After seventeen days in hospital, I walked out and started a new chapter in my life.

Four years on, I can say it has not been easy but through amazing family and friends, I am where I am now because of my determination and love from others .

Last year I set up a support group called Aunty M Brain Tumours. And I hope to become a registered charity that will support anyone effected by a brain tumour and help raise awareness. I am also writing a book about my experiences and will hope to be published at the beginning of 2013. What seemed like an unending battle — I have risen above it and very content with where I am now.

***

Thank you Claire for sharing your excerpt with us.  What an amazing story and I can’t wait until the book comes out!

You can learn more about Claire, her book, and her wonderful website, by visiting Aunty M Brain Tumours.

If you would like to submit your profile for Brain Tumor Thursday here, please email me directly at memomuse@gmail.com or you can check out the information page and read past archives.  Caregivers and loved ones are welcome to share their profile too, following the same template. #BTSM and #BrainTurmorThursday is a wonderful community reaching around the globe with out stretched arms and love.

Claire a gold medal winner! She is carrying a torch of hope and inspiration, as so many other people are who also walk this path.

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Here is an article about a young girl who had a brain tumor in 2009, which left her unable to speak after it was removed. She is the young girl pictured in the slide show in the field, holding the Olympic Torch.

http://www.belfasttelegraph.co.uk/news/local-national/uk/tumour-girl-hails-epic-torch-run-16178019.html

2012 London Olympics website