Cy

Diagnosed with nodal marginal zone lymphoma, Cy talks about living and working with cancer and finding his 'new normal' after attending a Live your Life workshop. 

Cy

On 19 December 2014, I was diagnosed, with a rare form of non-Hodgkin lymphoma, low-grade nodal marginal zone lymphoma stage 4 with bone marrow involvement. This manifested itself after a six-month period of not feeling well on a project I was managing off Nigeria. Whilst it explained the months of flu-like symptoms, night sweats, cramps, shortness of breath and weight loss, I was an otherwise healthy individual who had always been proactive about my health.

Initially, I thought it was the extreme side effects of anti-Malaria tablets which I was taking on a regular basis, and praying it was not Ebola. As during the project, West Africa (between 2013–2016) was going through an Ebola virus epidemic. On my return to the UK I saw my doctor, thinking he would give me a magic pill and reassurance. But, after a two-month period of blood tests, X-rays, MRI Scans, an endoscopy procedure and a lymph node biopsy, it took a while for me to fully comprehend the severity of my situation.

In the beginning I decided not to tell most people that I had cancer - more for their sake than mine. There is still stigma associated with any cancer. People do not know what to say. Unfortunately, the question 'how you are?' is the prelude to just about every social interaction.

A week after I was diagnosed I started my chemotherapy (R-CVP) regime which was going to be every three weeks for the next six months. After the first three chemotherapy treatments, a scan showed that the treatment was not working, and it was back to the drawing board. In March 2015 I then started a new chemotherapy treatment (R-Bendamustine) and completed my sixth and final round of treatment some three months later. The results from this treatment plan were encouraging and successful and I was now in partial remission (PR).

Now followed a two-year period of maintenance treatment of rituximab injections into the stomach every three months. Unfortunately, this had a detrimental effect on my immune system and was stopped after four of eight treatments. The chemotherapy and maintenance treatment took its impact on my energy and wellbeing. I found myself in an emotional dark and lonely place, the treatment and personal determination to defeat the cancer had taken its toll and I found myself physically, mentally and emotionally drained.

I had lost my confidence and finding life and work an unpleasant existence. Looking back, I was fighting the daily small personal battles, but I was only making slow steps forward, even with the strong support from my wife, cancer nurse, parents, close friends and other former work colleagues and the haematology team.

It was at this crucial point, some 18 months after my initial diagnosis that I realized I needed to put my hand up and ask for help and could not fight this battle alone. From here I finally took the advice and support of my nurse and sought counselling and spoke to my current employer for help. In many ways I was grieving for the person I was before cancer.

By chance my wife saw that Lymphoma Action was conducting a workshop in Bath in October 2017. Keen and excited to continue my journey of understanding and knowledge of the disease, I signed up for the day and was not disappointed. From the start of the day, I sensed that I was going to get a great deal of value out of the Live your Life workshop.

 
I suddenly realised I was still trying to live my old way of life, and the emotions I was feeling was a form of bereavement for that previous life. Suddenly, attending a Live your Life workshop, I understood why I was feeling the way I was.

Personally I found the workshop very informative and humbling, meeting other individuals who have had to fight their own battles, listening and sharing our own experiences. Within a short time, I had a Eureka moment, with the first presentation 'Living with the new normal'. I suddenly realised I was still trying to live my old way of life, and the emotions I was feeling was a form of bereavement for that previous life. Suddenly I understood why I was feeling the way I was. With this new perception on fighting, living and working with lymphoma, I use the knowledge and information gleaned from the workshop to create realistic personal action plans and achievable goals.

These action plans and goals, allowed me to cover every aspect of my life, from personal to work with an impartial outlook. Within the six-month timeline I set myself, I have now achieved my main goal, by reducing my hours at work. This in turn has had a positive consequence on other aspects of my life; living with a new normal.

The most important thing and crucial first step on the road to recovery, is the acknowledgment the journey is hard – harder, in many ways, than the illness itself. No surprise the period between diagnosis and remission has been a long and hard journey, all made easier with the support and assistance provided by all (my wife, family, close friends, colleagues, Macmillan, employers & Lymphoma Action).

Writing about my journey has helped me to become passionate about the importance of speaking out about my feelings.The single most important thing a person in recovery can do is set about finding their coping mechanism. Personally, this involves keeping life relatively quiet, avoiding big groups, immersing myself in people I love, exercising regularly and simply taking one day at a time.

I count myself as lucky to have been given a second chance to live my life and to share precious moments with those people who are dear to me, and in a small way help and support those who find themselves in a similar situation. 

If I can give one piece of advice from my experience of cancer it IS NEVER TO GIVE UP and DON’T BE AFRAID TO ASK FOR HELP. It is your personal determination and positive mental attitude, and support that gets you through the ups and downs of fighting, living and working with cancer. For those who want to know what to say to family member or friend with cancer, follow their lead, listen, show them you care and don't ignore them

I would like to close with a quotation attributed to Saint Francis of Assisi
'Start by doing what is necessary; then do what’s possible; and suddenly you are doing the impossible.'