Robb's story

Ten foot tall and bullet-proof

For the first time, husband, father and lymphoma survivor, Robb Longhurst shares his story.

The 44-year-old sales representative was “flat on his back” in North Shore Hospital when he was diagnosed with T-cell non-Hodgkin lymphoma, stage 4. At the time, he was 34 and his wife Odette had just given birth to their second child, son Nathan, who was born five weeks premature at National Women’s Hospital.

Until then, things had been going well for Robb and his family. He was working full-time and he and Odette were planning their life together.

The diagnosis
In 2000, Robb developed a persistent cough and began feeling fatigued. The cough gradually became worse. Robb says he thought there was something wrong, but Odette thought it was just a cough.

After two months, the cough began to affect Robb’s breathing. His breathing was especially laboured at night when he was lying down. Robb visited his GP who diagnosed him with bronchitis and wrote a prescription for antibiotics. He says: “At that stage I was in a bad way and I insisted on a chest x-ray.”

His visit with a private radiologist revealed a “big shadow” in his chest and the radiologist immediately recommended a CT scan. The next day, it was revealed that Robb had a large tumour in his chest near his heart.

It was just days before Christmas when Robb was admitted to North Shore Hospital. Many of the staff were on holiday and the hospital was operating on a skeleton crew. Uncertain as to whether the tumour was cancerous or not, Robb was taken to theatre for a biopsy. “It was a nerve wracking time,” he says.

In their seven-day wait Robb and Odette divided their time between the North Shore and National Women’s Hospital where their newborn was being cared for. It was while they were visiting little Nathan that the couple received a call that Robb needed to undergo another biopsy as the first one was inconclusive.

Robb’s condition worsened and he was admitted to intensive care. Robb was told that he had five years to live.

He says: “I thought I was ‘ten foot tall and bullet proof.’ I always had good health. I was totally shocked and thought that ‘it can’t be happening to me.’’

The treatment
Although his family was in shock, Robb’s parents and siblings (he’s the youngest of four) rallied and offered support. “The strength I got from my 73-year-old mother was huge,” he says.

The doctor told the family to say their last goodbyes. Robb says: “He didn’t think I was going to make it.” It was Robb’s mother and sister who insisted that something had to be done and a specialist was called in to insert a tube in Robb’s chest to aspirate the fluid.

Robb says: “It made a big difference. He needed that push to make it happen. If you have any doubt, seek a second or third opinion. Don’t always assume that all that can be done is being done for you.”

Robb was transferred to Auckland Hospital to receive high dose chemotherapy, radiotherapy and an autologous stem cell transplant (a transplant using the Robb’s own cells).

The Auckland Hospital staff provided hope when they let him know that his chance of survival was closer to 80 percent and that of all the cancers lymphoma is the most treatable.

His haematologist, Dr. Peter Browett, told Robb that he should have as good a life as anyone else. The emotion is unmistakable as Robb recalls his positive relationship with Dr. Browett who has been with him “from the start until now.”

During his treatment, his family and friends supported him. He says: “It’s the little things that help, like taking a meal around; being a listening ear or regular visits in the hospital. I’m outgoing; I like people’s company and communicating.”

His employer, who he had only been with for a few months, was also supportive and realised that Robb had to finish work to start his cancer treatment. His boss visited him in the hospital and, empathetic of the family’s situation, advanced Robb a month’s salary. “They didn’t need to do that and it was much appreciated.” 

With the support of family, friends and colleagues, Robb recovered. “My wife was great, especially having just given birth to our second child and having to visit both of us at the same time. I think the distraction was good for her, as it kept her mind off me.”

Side effects
In 2007, seven years on, the doctor noticed a drop in his platelet counts and Robb was diagnosed with myelodysplastic syndrome (MDS), a condition that arose from the toxicity of the chemotherapy, causing his bone marrow to fail. The only way to fix this condition was another stem cell transplant, this time from a donor.  Robb’s sister Jeannine was a perfect match. “It’s the best gift a person could ever give,” he remarks.

As a result of his first treatment, Robb had terrible headaches as the main side affect. His memory has also been affected and he finds it hard to concentrate. As a result of the MDS treatment Robb now suffers from fatigue. He says: “I find this very frustrating but I see it as a small price to pay to still be alive. I have dealt with this by giving up my full time work and taking time out to let my body recover.”

Today
Today Robb had secured himself a part-time job which he feels will be manageable for the time being. But he advises that survivors should “not be in a hurry to go back to the way you were before – baby steps! Remember your body has just been through a lot.”

His experiences with lymphoma, MDS and all the treatment he has endured has changed Robb’s life and now he tries to enjoy every day and feels there is a lot more meaning to life. “I think we are all guilty of taking life for granted until you get a serious illness, you don’t realise it. We as a family try to enjoy life as much as we can, even though financially it has been tough with only working on and off over the last ten years.”

Robb is supported by LBF. “I see them as a support base and a listening ear for any cancer or treatment related problems. I go to LBF meetings as much as I can to be a support to other patients that have also gone through a transplant and hear their stories of what they have been through.”

He and his family are doing well. He says that his wife Odette, daughter Jessica and son Nathan (now 10 and 9 years old respectively) and his dog Missy inspire him and keep him going.

“Seeing my kids grow into great people and experiencing fun times as a family – fishing in our boat, taking holidays, walks with the dog and time at the beach; I had a lot to live for and didn’t want to lose it. Family and friends are my most cherished items.”
They are planning the children’s first overseas trip to Fiji – “they are very excited!”