word-cancerMy life before Friday, May 13, 2011: I had recently remarried and was settling down to a nice life with everything to look forward to. I was working in sales & marketing management and really enjoying my life.  Married with two step-children and two from my previous marriage -  children are everything as they keep you grounded.  My dreams for the future were to build to a happy retirement and enjoy life to the fullest.

How one word can change your life! “Cancer.” Friday, May 13, 2011 at 11am, I was diagnosed with throat cancer, and my world fell apart. First thing I thought was “I am going to die, and I am going to lose my special wife Sharon, family and friends!”

I can remember the consultant saying, “The biopsy was positive. You have CANCER.” The next thing to happen, I can only relate to a “blue screen on a PC”:  my mind went blank, and I can’t remember anything else (information overload) that day or for the following week until my treatment started that included radiotherapy, chemotherapy, peg feed, two neck dissections and lots of recovery.  I lost 12 stones (168 pounds) in weight with massive body change.

cancer-bubbleDuring my treatment and recovery, I was diagnosed with depression (Sharon called it my “cancer bubble”). To help me get over the depression, Sharon suggested I get involved in a support group and use my sales and marketing skills to help them develop.

In November 2011, I started to attend the support group. And during 2012, I developed the group to full charity status by November 2012. The charity has now helped in excess of 1,500 like-minded people and communicates worldwide with other groups, patients, carers and health professionals.

The charity offers a 24/7 support line for patients, carers and family members to call for help or support.

I have passed my 5-year survival date and classify myself as a cancer survivor dealing with all the side effects and “survivorship.”

On my journey since Friday, May 13, 2011, I have listened and spoken to a lot of patients, carers and health professionals. With the knowledge and experience I have gained on my Journey, it is clear patients need a voice.

cancer-ambassadorOn August 1, 2016, I decided to take on a new challenge:  “World Cancer Patient Ambassador” listening to patients, carers and health professionals from around the world to clearly understand their needs and help improve the patients’ outcomes by sharing ideas and creating a loud “patients’ voice.”

Living with and beyond cancer is very hard. ut once you embrace and understand the side effects such as dry mouth, anxiety, weakness, tiredness and the unknown, you can then look to plan for the future and start to DREAM again. My dream is to help tomorrow’s patient and ensure their journey is better than today’s—remember 1% improvement will be 100% improvement to someone else.

I started this blog by saying “on Friday, May 13, 2016 I thought my life was going to end.” In fact, I think being diagnosed with cancer was the best thing that happened to me, as it has changed my life for the better. My life is now about splitting time between being the Chairman of the Swallows Charity and World Cancer Patient Ambassador but always remembering my family is the most important element and the reason why I am here today, because without their support and understanding I would not have gotten through the last 5 years.

Head and neck cancer from a patient’s perspective…

Head and neck cancer is a life-changing disease, affecting all aspects of your life: eating, talking and socializing all become very hard to deal with. Support is essential to being able to get through it. And no matter the person's gender, age, social status or background, basic support needs are often very similar. This is why the Swallows Charity was created and why they do what they do. Their work in the UK and the 24/7 Support Line  (07504 725 059) can hopefully provide this valuable support to patients, carers and survivors.

So many questions and thoughts, and disbelief:  “What am I going to tell my wife, husband, partner, children? Why me?  How did this happen?” all these fill your mind as you try to rationalize what you are hearing. The medical and nursing team provide details of the cancer and treatment, but your mind hasn’t yet moved on. “I am going to die. God, it’s cancer.”

Now for your treatment plan: “36 days of radiotherapy, and you will need a mask making. Chemotherapy one day a week for six weeks, plus an operation at the end of it all, we will fit a feeding peg to help you maintain your nutrition intake, and you will see our Clinical Nurse Specialist, Dietician, Speech Therapist...”

Once the realization hits home, there is often a feeling of isolation, despite the individual support of family and friends. Some people are fortunate to have lots of support, but this is not available to everyone. However, no matter the person’s age, social status or background, the basic support needs are often very similar.

The diagnosis, subsequent treatment and its consequences all take their toll. The need for support is there at all stages of the process. Some people require support over the short term, during specific stages of this journey, whereas others require a much more prolonged service.

At its very best, I truly believe that NHS cancer teams deliver first-class treatment plans and treat every patient as an individual, not a number. They get to know the person and family and work as a team to help get the patient through the treatment.

At the stage of diagnosis, the "information overload" is a massive issue and we all need to find a better way to deliver this information.

Through the eyes of a cancer patient who has been there and worn the T-shirt,

cancer-journey

Chris Curtis

Head & Neck Cancer Survivor 2016

chris@theswallows.org.uk

07779 169 833

www.theswallows.org.uk