Home > Uncategorized > FTIAT: The Waiting Room

FTIAT: The Waiting Room

Ben (lifefromthesmallestroom) began his blog to bring a face to Crohn’s disease, with which he was diagnosed in 2009. He’s incredibly forthright about how life sometimes feels like it’s lived from “the smallest room” now, but his forthrightness isn’t limited to Crohn’s. His thoughts on facing cancer are equally difficult to read and empowering.

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The Waiting Room

Someone once said, ‘Life is a roller coaster and you’ve just got to ride it.’

I don’t think of it as a roller coaster, but I agree you’ve got to hang on and ride it till the wheels come off, you’re blue in the face and you’re ready to throw up all over yourself.

Life isn’t a roller coaster. Life is a battle.

If there is one thing I know how to do, it is fight.

People call me stubborn, but there is a fine line between being stubborn and being determined, and I see myself as determined.

Cancer has shaped my life. In a way, it’s determined my life course so far. I wouldn’t be the person I am now were it not for cancer.

The first time I met Cancer, I was too young to really understand what it meant. I remember a needle in my arm, feeling sick and having my hair falling out. Apart from feeling like I wanted to throw up, I thought it was funny that my hair was falling out. (I still have that dodgy sense of humour!)

It was only when cancer took my grandmother that I really started to know what Cancer was and how it affected people. I was nine when I was told my grandmother had lung cancer and watched her slowly turn from a happy, semi-active older lady to one that ended up bedridden and uncommunicative in the space of two years.

Over my high school years, I saw two aunts fight cervical cancer and breast cancer and live.

Then it came closer to home again.

In the space of two years, I watched my mum’s hair fall out due to chemotherapy for breast cancer. I laughed when it grew back a totally different colour as she beat it.

I dropped out of university to help care for my stepfather as he was dying from pancreatic cancer, which ended up spreading to his liver, stomach and kidneys, and then sat myself in the oncology waiting room to be told I had testicular cancer. I was 20.

I told no one, not even my closest friends. I shaved my head and told people I was going traveling, when in fact I was going into the hospital for surgery and treatment.

Why? Because I didn’t want to be treated how I saw people with cancer treated—how people walk around on eggshells so they don’t upset you and they whisper in corners thinking you can’t hear them.

To the day my mum and brother died they didn’t know, and many people still don’t.

Over the intervening years I’ve had the pleasure and pain of raising money for cancer charities in the UK.  I’ve ran marathons for Cancer Research UK. I’ve abseiled down some of the UK’s tallest buildings and walked across hot coals to raise money for Macmillan Cancer Support, which helps with palliative care, because in my stepfather’s final days they gave me the support I needed to help care for him.

Over the years, I figure I’ve raised around £40,000/EUR49,000/US$65,935, but that still doesn’t relieve that guilt that I’ve survived while those I’ve been closest to died from it. I don’t expect it ever will . . . .

Having cancer has made me determined and more than likely a little stubborn. I know that sometimes this makes people angry, but I live each day as if it’s my last given that one never knows when it could come back.

Three years ago, I was diagnosed with Crohn’s Colitis, an auto-immune gastrointestinal condition for which there is no known pharmaceutical or surgical cure. In a strange sort of way, dealing with cancer has enabled me to deal with this condition. It’s showed me to live for the good days, and at the moment I’m having good days . . . even though I’m again spending time in the oncologist’s waiting room.


last: The Pogues and Parcheesi and afternoon strolls through IKEA | The Far Side of Sanity and Back Again: An Evolution in Thank You  : next

Categories: Uncategorized
  1. April 27, 2012 at 5:44 am

    The Crohn’s caught my eye — isn’t it funny how much you find in common with strangers. I’ve had Crohn’s since I was 14-15 (I’m now 55). It is a pain in the ass, literally and figuratively.

    I am sorry for all the battles you’ve been through. Because you’re right, life is a battle. Every day.

  2. April 27, 2012 at 6:18 am

    So sorry to hear about your struggle with Chrohn’s disease. I feel similarly about my battle with mental illness–but, still, that struggle is something I’m grateful for. Thanks for sharing your story.

  3. April 27, 2012 at 10:42 am

    This is such a difficult post to read. I do know that while cancer can be a random event in families, there are other families that are slammed repeatedly with it. And I know people who have survived one form of cancer, only to have another form years later. We are still so uneducated about cancer and even oncologists often play guessing games with treatment and prognosis. And then, to have another disorder to deal with, I can’t imagine. All I can say is that your courage to speak about what you are going through must be giving others strength to deal with their own challenges. I believe that it’s not about the circumstances of our lives but what we choose to do with those circumstances. I know two people who didn’t fully understand why they were put on the planet until days before their deaths. They were more alive, more visionary, during that time than any time before. And I have a close friend, a victim of brutal ongoing sexual assault at the hands of her father for the first 16 years of her life, who said that she knows she didn’t make a conscious decision to live until she was diagnosed with cancer after age 50. Live on. Write on. Inspire on.

  4. April 28, 2012 at 5:58 pm

    Your and your family’s history is crazy and inspirational – if you can survive all of that….. And, I feel good reading it on the eve of the Thomas G. Labrecque 9th annual, Running as One 4 mile event in Central Park tomorrow. I first ran it with my daughter and a group of friends to raise money and memorialize a dear neighborhood friend who died of lung cancer at age 35. And, the run is even more meaningful since my mother also died of lung cancer. It’s a very powerful event.
    You seem to have so much strength and endurance–I wish you continued strength!

  5. May 1, 2012 at 6:25 am

    Ben, I’m not sure if I’ve ever read a braver, more honest look at life than this. Look at what you’ve come through! It’s got to make the rest of life’s struggles seem manageable. Keep that fighter’s spirit 🙂

  6. lftsr1
    May 2, 2012 at 9:26 am

    I just want to say thanks for your comments. Neither Cancer or Crohns are easy to live with, but its comments like these that allows me to see the ‘good’ in people, that there is support out there when needed, despite the battles every day to live life outside the smallest room.

    World IBD Day (IBD is the medical term – Inflammatory bowel disease- for conditions like Crohns and Ulcerative Colitis) is coming up soon on May 19th. i’d like as many people as possible to wear PURPLE that day to show awareness and support of the conditions that affect 5 million people worldwide.

  7. May 3, 2012 at 4:06 am

    Ben, I have no idea what it’s like to have cancer affect so many relatives. For my family it’s heart disease. I can only imagine what you’ve endured with the loss and pain. You are an example of how to live one’s life, with courage and simply putting one foot in front of the other and carrying on, grateful for every single day. Thank you for sharing your story with us, I needed that reminder today.

  1. May 11, 2012 at 5:32 am
  2. May 11, 2012 at 5:46 am

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