You’re Never Alone

Building Relationships

I remember hearing the news from Dr. Chetan, “I am so sorry but the biopsy came back with carcinoma cells, you have cancer.”  I remember that initial feeling, numb, and instantly emotional. There I sat in the doctor’s office, diagnosed with a rare cancer, with so many questions.  My first thought was to find a doctor, who specialized in this cancer, start chemotherapy, and radiation immediately.  My family was too important to me to waste anytime.  Time was of the essence.

Looking back, I wish I had a patient/survivor during this process to help me discuss options about a plan, that technically doctors do not answer.  Dr. Lee, radiation oncologist, presented three different radiation options.  Who ever knew there were three options for radiation?  To be honest, before being diagnosed, I really didn’t know much about radiation.  Then, Dr. Sherman, presented different chemotherapies, but strongly advised Cisplatin.  This was so foreign to me.   It is like I needed a quick college course to understand what I was about to face.  The doctors presented options, but left the decision for treatment to me.  This is when I wished I had a network of past/present cancer patients to help me through the process.  At this point, I wasn’t thinking talk to someone, I was thinking plan, treatment, and survive.

Then I set up my blog, to communicate to my family and friends.  I thought it would be easier to just post updates for them eliminating me to repeat myself on the phone, or have Craig talking to everyone daily.  At the time, I never realized it would turn into a benefit for everyone creating a blog that allows me to educate and communicate at the same time.

Anthony’s Family

During my treatment, a fellow survivor, Anthony reached out to me.  Never in a million years, did I think our relationship would build into a friendship. It all started with a simple message on my blog, to me emailing him, and building a relationship with him. We actually continue to help each other discussing side effects and fears we face on a daily basis.  I also was able to hook him up with fellow survivors that reached out in New York, building our own Nasopharyngeal Carcinoma network.  We both are determined to talk to people and help anyway we can.

Anthony family resides in New York, and cheers for the New York Rangers. Our families are quite similar; Italian, need I say anymore.  His upbringing reminds me so much of my family.  It was an instant connection.  We both were raised in the northeast, with loving families who love food, and are full of jokes.  One morning I woke up to this photo.   I instantly had tears in my eyes.  I knew we were in this together.

Then came the NHL playoffs.  Never in a million years did we think our teams would go head to head in the second round.  It actually made it quite fun for us, however; the jerseys created a little good controversy in the post season.  His one son thought the jerseys were bad luck for the Rangers, so he froze the 41 jersey until the round was over.  All I could think about was Craig was frozen.  I pictured his jersey folded up neatly freezing to death.  Then they proposed the idea, that if the Senators win game six, we would inherit their dog, Zuccarello.  I never told Craig that joke until afterwards because we already had two dogs, and to add another dog to our crazy lifestyle could of mentally took him off his game.  That being said, we never inherited Zuccarello.  We thought he was better off with the Ranger fans.

This past month, we had the opportunity meeting each other at Anthony’s Coal Fire Pizza.  It was awesome to finally meet Anthony and his lovely wife, Sandra.  It was good to talk about our side effects and for the caregivers, Craig and Sandra, to discuss their concerns as caregivers.

Additionally, I joined the Nasopharyngeal Group on Facebook creating close relationships with two other women, Erika and Mouana. They had their treatment at the same time I did and found it very beneficial to be able to learn from each other.  I also look forward to meeting them one day too.  The whole group on Facebook has been a great support system too.

If you are about to start a cancer journey, my advice to you would to be team up with another patient/mentor.  It truly helps to talk to someone walking in the same shoes as yourself.  Even though each case of cancer varies, it is comforting to talk with other cancer walkers to help understand the process and struggles one faces.

I am very fortunate and blessed to be in the position I am to meet so many people through the blog, but don’t be afraid to ask your doctors if they have patients or support groups that are available.  There are also support groups on Facebook to join too.  It breaks my heart to say this, but remember you’re never alone.

 

 

 

 

8 thoughts on “You’re Never Alone”

  1. Nicholle, I am so happy that you have made so many strong connections during your cancer journey. There is nothing quite like knowing that somebody else understands what you are going through. This holds true for the caregivers as well. You and others are making a difference and bringing an awareness to a type of cancer that most people don’t know a lot about. I commend you for that. Your advise to others to seek a mentor/support or a fellow cancer survivor if faced with a diagnosis is so important. Like you following my diagnosis all I could focus on was treatment, I had tunnel vision. Everything else could wait, so I thought. I realize now a year later that it would have been very helpful long term to have had that support in the beginning and the focus on mental is every bit as important as physical health.
    I commend you again for raising so much awareness and offering support and encouragement to so many people. Enjoy your summer !

    1. If you ever think of topics that needs to be address, please let me know. There are so many things to discuss and to educate on.

  2. Gosh, I’m gearing up reading your post about meeting Anthony. He is so lucky to have connected with and finally met you and Craig, lol, I felt like I knew you in the playoffs, just a huge hockey fan who saw your story and connected through twitter lol.. cheered for your team all the way. Blessings to you and your family Nicole, this world needs more Angels like you 💖

  3. So happy to read this. I am a health care worker in a small cancer centre in Ontario. My son is a goalie that played all four years of Jr A in Ottawa (for the Ottawa Jr Senators). Needless to say, your story has a place in my heart.

    Thank you Nichole for caring about others and sharing your story.

    You and Craig are an inspiration.

    Janet

  4. You are such a strong woman!! I follow the Senators and that is how I found your blog. It is wonderful that you can teach people through your own experiences. As hearing you gave cancer can be scary and intimidating. I am extremely glad you are cancer free. Keep up the great work, you are reaching a lot of people! 💖

  5. Your doctor was right on about Cisplatin. I had it twice. It kills you, destroys nerves, and far more. A powerful drug but was the one available for the cancer’s at the time. Like you I was alone. I stayed alone so afterwards I started a support group, then discover a national one and services them up in several states, many hospitals and started training survivour’s to work with patients. I also started a caregiver’s group and support in other ways. We also donated money for whatever was needed. People need each other. The helper gains as much as the patient. Been on both sides. Have survived 5 times now. Though 4 but it is 5. Positive attitude. CHEMO means God helps everyone overcome if you wish to use that. Just have fun when you can. Keep mind active and be however you are. No need to be sorry. Just force your caregiver to take time off so have several. It is very hard on them. I always said I did whatever I needed too as I liked this side of the earth better. I was simple. Nature, river watching, enjoying my young son. Just living. I never changed that. I rarely thought of how I felt. I never doubted I would live. If I was going to die I was going to live fully! Thanks for starting thos.

  6. Hi Nicole, Thank you for sharing your courageous story and congratulations on the cancer-free diagnosis.

    I came across your story when I was searching information on nasopharyngeal cancer a couple of months ago, because my daughter (after a few months of recurrent colds, blocked ears, etc.,) was diagnosed with the same condition. It was a shock to all of us, particularly for a 40-year-old. She went through the horrendous treatment with pain, heavy drugs, mucositis, and now that the treatment has ended, she has a very dry mouth and nasal symptoms. We have ordered a device, developed in Israel which produces micro-stimulation to the nerves of the mouth and supposedly has a very good success rate.

    Right now the anxiety levels are getting very high as she has her three month scan in nine days. Thank you for sharing your story as it has given me optimism going forward. We live in Perth, Western Australia and the treatment protocols appear to be the same as in North America.

    Best to your continuing good health.

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