- Diagnosed with Non Hodgkins lymphoma

Ian's story

Ian Wilton is what you might describe as a typical self-made Cantabrian man. A husband, father and grandfather of three, Ian worked his way up from radio technician to corporate executive and then to general manager of his wife’s business. All the while, he maintained an active lifestyle with golfing, running, fishing and family outings. Not even a stroke in 2005 slowed him down. So it came as a shock when, in 2007, Ian was diagnosed with blood cancer. Just prior to a cataract operation on his eye, Ian had bouts of diarrhoea, and while checking his abdomen, his doctor found a suspicious lump. A biopsy brought the diagnosis of large cell follicular Non Hodgkins lymphoma. Large cell follicular Non Hodgkins lymphoma is a slow-growing blood cancer which affects the white blood cells. This type of lymphoma usually cannot be cured, but it can be well controlled with treatment – if it isn’t too far advanced.

The prognosis didn’t sound too good in our initial discussions with the doctors. So much so, that I started thinking about my bucket list and what I wanted to do with the time I had left. My wife and I run our own business, but suddenly we were planning for its future without my involvement. It was quite overwhelming.

Ian was concerned about what his diagnosis may mean for his quality of life, and what the impact on his family would be. His family were shocked but reacted with support and loving messages, which buoyed Ian’s spirits. Ian started treatment in January 2008 with six rounds of chemotherapy, followed by an active monitoring period, when no treatment was given. It was during treatment that Ian first became aware of Leukaemia & Blood Cancer New Zealand (LBC) after spotting pamphlets in the ward at Christchurch Hospital.

Initially I didn’t get in touch because I couldn’t see how they might help me. It wasn’t until a friend prompted me that I got in contact with the local LBC Support Services Coordinator, Ady Sipthorpe. Now, I make sure I give her card to every blood cancer patient I meet. Ady was very approachable and warm. We met regularly and also chatted on the phone about my treatment and diagnosis, and she helped my wife Alison and me by explaining what the medical terminology meant in simple terms. My wife has a background in nursing, but even she needed help to understand some of the specific terms used by the specialists!

Ian began another course of chemotherapy in late 2009, which finished in April 2010, and responded well with minimal side effects. As a result of the treatment, the tumour in his abdomen had shrunk to the point where it could hardly be felt. But in June that same year, Ian was found to have a carcinoma on his lung, which had to be surgically removed. Despite this, Ian recovered and has remained physically well.

However, mentally it can be hard. I’m lucky to have the support of my darling wife, and my family and friends, but it was only when Ady invited me to a monthly support group held at the LBC offices in Christchurch that I realised that there were others going through what I was going through. Being able to share experiences, hear how others are progressing with treatment, and speak freely and openly about anything has been invaluable to me.

As a long-term survivor of blood cancer, Ian’s participation in the support groups is also helpful for others who are in various stages of their own cancer journeys, showing them that it is possible to live well. Living with a long-term condition affects people in different ways. Alongside feelings of isolation, there can also be a sense that they have no control over their lives. Sometimes an individual may find themselves unable to work or participate in some of the activities they enjoyed pre-diagnosis.

One way Ian helped to regain control of his diagnosis was to educate himself about the disease by reading LBC’s booklets, watching videos and attending special talks that are held several times a year around the country. Ian and his wife also attended LBC’s Blood Cancer Patient Forum, a one-day conference with medical professionals speaking on a wide range of topics from disease biology to treatment updates and coping with the practical and emotional challenges of living with a blood cancer.

The speakers are full of knowledge about new technologies and new drugs, and the sessions are interactive with the opportunity to answer individual questions. Alison and I found the event optimistic, easily accessible and well organised, and I’d like to attend this year’s conference because things move on so quickly in this field.

For Ian, who has been physically active for his whole life, maintaining regular exercise has helped him to keep positive.

Since my health problems began, I have been obsessive about going to the gym and, as a result, I’ve lost weight and gained muscle tone. I feel younger at 71 than I did at 60. I’m even a part-time sports model with my image on the back of a bus.

Ian has been in remission now for many years with no symptoms, which means he rarely thinks about his condition from day to day.

There are the occasional reminders, such as the six monthly medical checkups to make sure everything is still okay, or when you need to provide your whole medical history to get travel insurance for a short trip.

Nevertheless, Ian wouldn’t give up his interactions with the LBC support team.

I’ve lived with blood cancer for over 10 years now, and the support of LBC has been invaluable throughout. I consider Ady and Helen at the Christchurch Support Office firm friends and their positivity over the years has been tremendous. They’re always there for you.

Ian at the gym.