Claire Bullimore Brain Tumour Story

Surviving a Oligodendroglioma

Wendy Santana Was Diagnosed With Brain Cancer

Wendy Santana Was Diagnosed With Oligodendroglioma In October 2014 And Shares Her Experience With You.

Wendy is a wife and mom, who is passionate about human rights.  Wendy spent over two decades building a successful career in the non-profit sector, where she helped lead and raise funds for services that benefited some of the most disadvantaged populations in Los Angeles, California.

I was misdiagnosed several times

Hi Wendy, how did you find out about your diagnosis?

One night while I was reading a bedtime story to my son, I had a grand-mal seizure.  My husband called the paramedics and I was transported to a nearby hospital.  After some testing, I was given an MRI, followed by a biopsy that confirmed a malignant brain tumor.

What were your symptoms?

Oh my gosh, I had all kinds of symptoms and even went to my primary care physician a few weeks before the seizure.  I was misdiagnosed several times. The tumor was located in my left frontal lobe split between my primary language function and motor strip.  It was a location that triggered my emotions and anxiety.  I had headaches for a few weeks prior to the seizure as well.  I basically never felt well but I always managed to push through it.  The agency I was recruited to lead 13 months prior to my seizure was struggling financially when I arrived.  I put so much of myself into reviving it–that by the time of my seizure the agency was healthier than I was.

How are you doing now?

I’m doing much better now that I have finally accepted my diagnosis and my new normal.  I have learned how to pace myself and how to plan my days knowing I have limited energy.  There have been a few more layers to my health issues which have been uncovered during the last couple of years.  I had another major surgery a while back and thankfully I have learned how to better listen to the signals that my body sends me.  I have had several brain MRI’s since my craniotomy which have shown me to be “stable” thus far.

What motivates you?

Being productive and making a difference.  One of the first things I did in 2015, while still recovering from a craniotomy, was to create a book with my son called “That Thing on my Mom’s Brain” about our experience.  The book was published by The Musella Foundation for Brain Tumor Research and Information.  100% of the residuals from the sale of the book go toward finding a cure for brain tumors.

In February of 2017, after dealing with aphasia for over two years, my voice returned.  On April 7, 2018, I shared my story with a live audience during a KPCC Unheard L.A. event.  Building on that success, I finally felt I could face the crowds, lights and loud sounds of a large event, so last year, I was able to participate in the American Brain Tumor Association’s BT5K fundraiser in Los Angeles.

In 2018, I also created a blog http://2ndchance2live.com where I share resources for survivors and write about my journey from brain cancer to life rediscovered.

Who is your personal hero or are your heroes?

I have several but my husband has to be my favorite.  He stood up to the medical professionals when I was in the hospital and they wanted to perform a craniotomy on me the morning after we were given the brain cancer diagnosis.  He sought out second and third opinions.  Eventually we ended up at UCLA Medical Center which is over an hour drive from our house on a good day.  My neurosurgeon, Dr. Linda Liau is one of the best in the country.  I truly believe it was my husband's strength and Dr. Liau's skill that provided me with the best possible outcome.  We have been married since 1992. He has stayed by my side through all of this and continues to take me to every MRI appointment.

I also need to mention my stepmom, Kathy (my dad’s second ex-wife) and her husband, Craig. Kathy stayed with us for seven months after my diagnosis because I couldn’t drive.  Kathy and Craig kept everything normal for our son so my husband could focus on work and my recovery.

What is the toughest challenge a survivor faces?

In addition to treatment and recovery; I would have to say finding support and being understood.   As you know, this is an invisible disease and unless someone has personally experienced it as either a patient or a caregiver, it’s hard to comprehend how much a traumatic brain injury can alter one’s life.  Many survivors also lose their livelihood and struggle monetarily from the medical expenses as well.

Any advice for people or loved ones that get daunting diagnoses?

Following are a few of the things that I suggest:

1)  Read about other survivors

2)  FaceBook groups

3)  Talk to someone and/or seek out an in-person support group

4)  Each of the resources and suggested reading that I share through my blog has helped me in one way or another

5)  Be patient with yourself, it takes time to heal


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Tell us something about yourself that people probably didn’t know. It can be anything?

When I was in college, I started an outreach program that assisted hundreds of homeless people living on Skid Row in Los Angeles.  The effort continued for several years and grew really large.  I was very passionate about it and collaborated with friends, neighbours, local businesses, and colleagues.  It continued on as I worked my way through college and ended up landing a position in the corporate world.  At the time, I had no idea I would eventually make a career change that would allow me to utilize my business skills and serve society in a meaningful way.

What motivates you?

My husband, son, family, friends and our animals.  Promoting brain tumor/cancer awareness so a cure can eventually be found.

Please give information if you have a website.   http://2ndchance2live.com/

What is next on your agenda?

Well, my son will promote from middle school in the next few weeks and he has a very busy summer.  Beyond that, I am looking forward to serving as a volunteer on the planning committee for the American Brain Tumor Association(s) BT5K Los Angeles event which will take place at USC on October 26th this year.  I have personal goals of keeping my blog going, continuing to raise awareness about brain tumors, and giving another speech this year too.

What is your blog about?

I am striving (like you) to become somewhat of a resource in the brain tumor community. I am most proud of the “suggested reading,” “resources,” and “gratitude” tabs of my blog.  I write about my journey toward becoming more mindful and the eventual acceptance of my “new normal.”

What motivates you to blog?

Looking at experiences through the lens of a writer (I'm always asking myself what does it look, sound, smell, feel, taste like)?  I have been learning to check in with my senses which helps me to be more mindful of the current moment.  It also helps when I'm fearful about a lab result or test (such as an MRI) because I know that whatever the outcome I can eventually write about it.  Hey, in the worst case scenario, I'll have new material and experiences to explore and write about.

What is the hardest thing being a blogger (if any)?

I struggle with limited time to write and find it very difficult to write when I have a headache and/or don't feel well.  I also feel like I have so much to say and want to be able to get it all out while I still can.


Conclusion: Wendy you are a true inspiration!!

Related Posts

I Survived a Brain Tumour and Breast Cancer

I Have A Diffuse Astrocytoma On My Brain Stem

My Son Was Diagnosed With A Ependymoma

 

Helpful gifts for a person affected by cancer or benign brain tumour

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I Survived a Brain Tumour and Breast Cancer

Brain Tumour and Breast Cancer Survivor Story of Dawn Hamill

Dawn Hamill has survived a brain tumour and breast cancer and is now a blogger sharing her experiences and her daily life.

Dawn is a courageous and inspirational lady. She was diagnosed with a Benign Parasaggital Meningioma in November 2008 and later on in 2014 was diagnosed with Grade 2 Invasive Ductal Carcinoma Breast Cancer.

I initially met Dawn on my Facebook Page in 2012 and then had the chance to interview her on my ‘Brain Tumour Thursday Radio Show’ in 2014.  You can Listen to the segment of our interview here.

Be inspired by this true warrior

This week I asked Dawn to update us with how she is now 5 years down the line since her last interview.

How are you feeling now since your diagnosis?

My diagnosis was incredibly sudden.  One day I was at work in my National role of Nurse Consultant, the next day, following my first Tonic-Clonic seizure in the night, I was lying in a hospital bed awaiting Brain Surgery. I had no idea how much my life would change as I was wheeled to the theatre on that Wednesday morning in November 2008. Looking back now I can think I went into shock and, drugged up on new epilepsy tablets was really quite numb! It was as though the events were happening to someone else while I watched.

Now ten years later I often tell people “my brain tumour was the best thing that happened to me, it got me out of the rat race of work which gave me the gift of Time.  It also taught me how to live in the moment and really appreciate the small things in life”.  People look shocked when I say that!

Are you struggling with anything since your diagnosis?

I could spend a lot of time listing the things I struggle with but I prefer to focus on the positives. However, as you have asked my two main irritations are firstly my ongoing epilepsy which, despite many drug changes, still affects my days and weeks.  Secondly, my limited mobility as luckily following surgery I regained the use in my right leg and left arm but have never regained the full use of my left leg.

I also get frustrated that everything takes me so much longer to do nowadays as my brain doesn’t work at the speed it used to and I find it harder to retain information. I think that’s caused by a combination of the fatigue and the plethora of epilepsy medications. I take so many tablets I rattle!

What do you do now in your life in the week?

My life is so different compared with ten years ago. Writing has become my main focus. I write a blog about living a meaningful life after a brain tumour and breast cancer. But lately, my posts are infrequent as I am working on some research for a book on an organisation called the Adult School which is closing down but has a history going back 220 years. I also sing in a choir, play a bit of piano, try and do a bit of exercise when I have the energy and see as much of my friends and family as I can. To get out and about I now use a community (ring and ride) minibus service – something I thought was just for the elderly before! I also borrow mobility scooters when I need to.

We also keep an allotment where my husband and I grow our own vegetables. We have designed our plot to make it as accessible as possible for me as I tend to fall over a lot!

What motivates you?

Being lucky enough to have survived a brain tumour then breast cancer motivates me. I have always been someone who is motivated to make the most of life and that hasn’t changed since the brain tumour. I like to have something to look forward to but also to keep my mind busy every day after all as the saying goes “if you don’t use it you lose it! “

Brain Tumour and Breast Cancer Survivor Story of Dawn Hamill

Who is your personal hero or are your heroes?

My personal hero is my husband. He has been by my side through some incredibly tough times caused by my ill health. He understands my fatigue and epilepsy and is my radar for ensuring I don’t overdo things! He reads me better than I read myself. I am stubborn and find it hard to accept I can’t do everything I want. He has given up a lot too because of the way we now have to live our lives. We used to love dancing, long walks in the countryside and up mountains and travelling abroad to bird watch in remote areas. We can’t do any of these now and he never complains.

My other heroes are you, Claire Bullimore, Chris Lewis, Margaret Chandler and Danielle McGriskin amongst others. You have all seized a negative in your life and channelled it into helping so many others with brain tumours, and other cancers. I watch what you all do with such admiration.

I thought that with my extensive nursing background I would take a similar route in helping others. Once I had recovered from my surgeries, I dipped my toe in the water of charity work and volunteering, however, I discovered that I had worn my caring genes out! It took me a couple of years to understand and accept that was the case.

Read Others Stories:

Mother of 4 was Diagnosed with a Hemangioblastoma

My Brain Tumour Made Me Who I Am Now

I Was Diagnosed With A Central Neurocytoma

What would you say is the most exciting thing you’ve ever done since your diagnosis?

I really had to think about this question. Probably getting married was my most joyous occasion. But exciting; now that’s a challenge. Mmmm, there are so many things but the one which immediately comes to mind is travelling from the airport in Venice to our hotel just off the Grand canal in a private water taxi. I loved the feel of the wind in my hair and watching the joy on my Moms face as we passed the beautiful old buildings as the holiday was a treat for her 80th birthday.

What is the toughest challenge survivors face?

I can’t speak for others but my own is the ongoing journey to ‘acceptance’. What I mean by that is ‘acceptance’ of the changes which occur after a brain tumour and in my case breast cancer, epilepsy and limited mobility is an ongoing process. I had never understood that before. I thought once I had reached acceptance that would be it. But it isn’t. I imagine it is the same with any ongoing health condition.

For example, I have accepted that my mobility has been considerably affected by the tumour and surgery. BUT day to day I still get frustrated if I come up against something new which I can no longer do. One of my life dreams was to visit Antartica, however, when I started to seriously explore the possibility of doing this, I came up against so many hurdles and brick walls I eventually gave up. It has taken me a year to accept that yet again my mobility and epilepsy are stopping me from achieving another dream.

Any advice for people or loved ones that get this daunting diagnosis?

Claire, you have the knack of asking tricky questions! I guess I have a few points I think are worth sharing:

  • Take it day by day, sometimes the best you can achieve is to get through the next hour
  • Be kind to yourself
  • If you want, information only use reputable sources such as NHS or large charities.
  • Approach a support group – it took me two years before I was signposted to any support and it was the best thing that happened in my recovery
  • Accept counselling if you are struggling, I don’t know how I would have coped without it!
  • Don’t be afraid to ask for help, people want to do something so tell them what they can do such as prepare you a meal, take you out, give you a lift to hospital etc.
  • Sometimes change can bring good things, you just have to look out for it.
  • Live life in the moment, try not to spend too much time looking backwards or forwards to the future, learn to enjoy each moment.
  • Understand that acceptance of your situation is an ever-evolving entity.
  • Never, Ever Give Up.

Tell us something about yourself that people probably didn’t know?

When I was in my 20s I made a list of the things I wanted to do before I was 50. I then worked through them and am so thankful I had the foresight to do that then, as I was 45 when my brain was discovered. My ticked off list included:

  • Do a freefall parachute jump
  • Learn to play the piano
  • Join a rambling group and walk every week
  • Climb mountains
  • See the Grand Canyon and walk to the bottom
  • Take up ballroom dancing
  • Have afternoon tea at the Ritz hotel in London
  • Study for a Degree….

Conclusion:

Dawn is a true fighter. It can be hard to believe after one diagnosis like a brain tumour means there are no other battles ahead. It is unusual for this to happen but, Dawn shows that people can get through any battle with support and loved ones by your side. We must never take life for granted and we must step out of our comfort zone and get on the train that direct to the life we want.

Keep reading to find out more about Dawn and about her blog  Mind the Gap A-Z

Also, find Dawn on Twitter at dawn_hamill

Why not write your own list of ‘To Do Lists' and start ticking off the boxes like Dawn has been done?

Read Others Stories:

Back To Work Gifts After Brain Tumour Recovery

Top 10 Games To Exercise Your Brain

Helpful gifts for a person affected by cancer or benign brain tumour

Follow:
ClaireB
ClaireB

Find me on: Web | Twitter

Claire Bullimore brain tumour Story
Helpful gifts for a person affected by cancer or benign brain tumour