Patient Story Type: Lymphoma

Rose Stokes and her husband Colin have always been open and honest with their three children. So when Rose was diagnosed with lymphoma in early 2014, they decided to make sure their family knew exactly what was going on.

After feeling unwell for a long time, Rose went to see multiple doctors who were unable to give her a definitive diagnosis.

Rose told her children straight away that she was going for tests.

“We didn’t want any secrets in our house,” says Rose.

Rose’s youngest son Alex says it was good to be told right from the start that something was going on.

It’s scarier when you don’t know what is happening at all because then you always think the worst.

The family relocated to Auckland at the beginning of 2014 with Rose still unsure as to what was making her feel so unwell. One week after the move she was finally given a diagnosis of peripheral T cell lymphoma, a kind of non-Hodgkin lymphoma. Rose’s three children, Daniel (14), Jana (12) and Alexander (11) were told straight away.

The family have been able to openly discuss Rose’s treatment together and help her through the really tough times.

Although they are still relatively young, the children feel they have become more responsible since Rose was diagnosed and have tried to help the family in any way they can.

“We gave mum a spa and massage night and did her nails, we run her baths after she’s had a big day and we always make sure we get her out of the house to exercise so she is keeping healthy!” says Jana.

One thing that they have got to help with which they never thought would happen was to cut off all their mum’s hair.

I knew I would lose my hair from the chemotherapy so I decided it would go on my own terms.

The children all helped her by cutting it into a bowl cut then a mohawk before shaving it all off. This made the whole process easier and everyone felt more comfortable seeing Rose without hair.

Each child has decided who to tell out of their friends and peers at school. Jana’s teacher told her class that Jana’s mum had cancer.

“I’m really glad my teacher told everyone because it has made it much easier for me to talk about it on my own terms. If I ever got upset I knew that people would understand,” says Jana.

Both Alex and Jana agree that animals are a help during difficult times and they have both gone to their pets for comfort and a cuddle.

“I have put a lot of my energy into my horse and our cat as they help me to think and are very calming to be around,” says Jana.

Alex likes having the family cat around to sit and spend some quiet time with when he has lots on his mind.

Despite being unwell, Rose has still tried as best she can to be there for the family.

“Mum is still here but not in the way she used to be but we know she always tries her best,” says Alex.

“It can be hard sometimes when you are playing sport or doing something and you turn around and mum’s not there, but we know she would be there if she could.”

The children admit that despite knowing all about Rose’s autologous transplant at the end of 2014 they were still a bit worried.

“Mum going to hospital for a month did scare me a bit,” says Alex. However knowing where she would be and what was happening helped them to prepare for the change.

Mum’s cancer has changed our family forever and it will always be a part of our lives.

“Everyone’s situation is different and we are all learning what works for each of us to deal with everything.”

Esther Pekepo, an 18-year-old secondary school student from Auckland, was juggling her Year 12 studies with her hobbies, including dance and soccer, when mysterious lumps began to appear on her body.

“The first lump appeared on my chest, and it just kept growing until it was the size of half a golf ball. At first I thought it was a bruise but it just kept getting bigger and harder. Then other lumps started popping up over my body, on my stomach, my back and my chest. I think in all I had about ten lumps.”

Esther went to her GP, who prescribed antibiotics and sent her for blood tests which came back clear.

“My temperature was all over the place, I would be boiling hot, then freezing cold, and I was also really, really tired. As I was a bit depressed at the time I thought that perhaps my body couldn’t keep up with my mind. I was also having real trouble sleeping,” she says.

Esther kept returning to her GP over the next three months.

I remember the GP saying to me you’re too young for this, and wondering what that meant. Then it got to the point where I couldn’t sleep, could barely eat and barely walk as lumps had started appearing on my inner thighs.

She returned to the doctor’s surgery and was seen by a locum GP.

“He took one look at me and said something is really wrong here”. I was admitted to hospital straight away. They immediately started to do lots of tests and kept me in overnight.

“Heaps of doctors kept on coming in and out and looking at me. I felt like I was in an episode of House (a popular television programme),” she remembers.

“I just kept wanting to know what was happening and when I could go home. I had a big dance event coming up and wanted to go to the practice, but actually there was no way I could have done it.”

After extensive testing Esther’s haematologist explained that she had T-cell panniculitis, a form of lymphoma. She was grateful her guardians and family members were with her when she received her diagnosis.

“The doctor told me that my immune system was affected and that they would put me on medication. At that point I didn’t know how serious my condition was.

“I remember thinking thank God I’ve got lymphoma and I don’t have cancer.”

It was not until Esther returned home a few weeks later that her guardian broke the news to her that lymphoma was a form of blood cancer.

“Hearing the word cancer was just such a shock. It hit me really hard, it was like a slap. The doctors might have told me earlier about it being lymphoma but I don’t recall hearing the word cancer. I think that I could have dealt with it better if things were a bit clearer.”

Esther began a course of oral chemotherapy, had regular blood tests every day, and was in and out of hospital. She was determined to keep up with her studies.

“It was hard going. It was a while before I was able to walk again and I also had to learn how to write again, as my hands couldn’t grip anything,”

“I decided to focus on sitting one exam for English which I managed to pass,” she grins.

Esther also met Waiariki, a girl of her own age at CanTeen, who was diagnosed with lymphoma two days after her.

“It really helped me to share our symptoms and have a good laugh about everything that we were both going through. It was so strange, we had so much in common, we both liked to laugh and liked to dance and our favourite colour was purple. It was like we were one mind in two different bodies”

Gradually as her treatment progressed Esther began to feel better each day and returned to school to resume her studies, but had to keep physical activity to a minimum.

I didn’t want to tell anyone that I had cancer, I needed to understand how to cope with it before I shared it with other people.

Esther confided in close friends and family who were supportive of her.

“Actually a lot of people didn’t know I had lymphoma until they saw me in the LBC video for World Lymphoma Awareness Day. They were like, “why were you in that ad?” And I was like. “because I have lymphoma,” says Esther.

Esther is taking one day at a time and gradually regaining her strength.

“I’m back dancing again but I can’t do sport yet, as I still get quite tired. Sometimes I wonder if it’s because of my diagnosis or if I’m just unfit,” laughs Esther.

“I know I need to learn my limits, but I’m definitely pretty good at pushing them,” she says.

In recognition of her amazing spirit, Esther was recently awarded the People’s Choice Award at Onehunga High School’s senior prize giving.

“I was so surprised that people saw all the good in me. I thought the award should go to everyone!”

Esther has some insightful advice to other young people diagnosed with a blood cancer.

Don’t let it scare you. The only difference between yesterday and today is that you have lymphoma, you’re still the same person. You don’t know what’s going to happen, so take each and every day as it comes, just keep going.

“A wise friend once told me, every morning when you wake up the day is untouched, no one knows what’s going to happen, anything could happen. Touch the day with how you want it to go,” says Esther.

“I’ve taken lots of positive things out of having lymphoma. I had to hit rock bottom and be scared, and get over having cancer, to see the better things that are around me.”

“Lymphoma, yes it is a heavy burden, but ones strength and ability to remain positive through a time like this is the most overpoweringly beautiful gift you could ever acquire.”

When Gary Fredericksen went to a respiratory specialist with a chest complaint, he didn’t think it was a big deal. However he became concerned when the specialist found lumps on his body and referred him for a biopsy. After a nervous long wait, Gary was told he had stage four lymphoma.

Gary tried to keep things to himself to start with, but his wife Maree knew something wasn’t right. After a lot of questioning, Gary handed her the letter with the results on it.

“When I read that letter I just fell to bits,” says Maree.

Gary and Maree had never heard of lymphoma and didn’t understand what the diagnosis meant. In the busy period right before Christmas they were able to see a doctor and have some questions answered.

The doctor said “well this won’t be the thing that kills you”, which was actually really nice to hear at that time, says Gary.

Maree knew a client through her work who had leukaemia who she went straight to for advice.

“The first thing she told me was to not look at anything on the internet and to go and speak to Leukaemia & Blood Cancer New Zealand (LBC),” says Maree.

Gary didn’t take the news of his diagnosis well and did not want to acknowledge it or speak about it. He now admits that he was in complete denial.

I was a fitness freak my whole life and to be honest I thought that I was bulletproof.

“I didn’t want to talk to anyone about my diagnosis. I just wanted to get on with my life.”

Gary was told his lymphoma was chronic which meant it did not presently require treatment. He instead has been put on active monitoring until his condition becomes acute.

Maree contacted LBC as Gary was not comfortable doing so at that time.

“I went to LBC and met Rebecca who really reassured me things were going to be ok.”

“She gave me so many books to read and take home to Gary and it helped to know we had someone to talk to,” says Maree.

Gary says that while he tried to live in denial he lost a lot of his self-esteem. Eventually he decided to go with Maree to talk to LBC and everything turned around.

“When I met Rebecca it was like a light switched on. She was so bright and positive and she really made all the difference to my head space,” says Gary.

Soon after, the Fredericksen’s attended a mindfulness course which helped Gary to adopt a more positive attitude.

“The mindfulness course helped me to build the confidence back that I lost when I was diagnosed. There were so many other people there in similar positions to me and they were happy. It showed me it wasn’t all doom and gloom,” says Gary.

Although being on active monitoring can often be stressful for a patient and their families, Gary has learnt to accept his diagnosis and not let it hold him back in life.

I have no hesitations telling people that I have cancer because it’s now something that I don’t run away from.

The Fredericksen’s say that attending support groups at LBC gives them a place to share with others so they do not dwell on things alone.

Through support groups, Gary has learnt how to take a positive approach to life as he says “negativity gets you nowhere”.

“The support group is a place to talk with an even playing field. It’s a safe environment where no one judges you,” says Gary.

“Every time we attend a support group we take something new away with us that we didn’t know before.”

Gary and Maree are aware that eventually Gary will need treatment but they choose to not look that far ahead and instead focus on enjoying their life together.

Along with the support he has received from LBC, Gary says Maree has been incredibly supportive since his diagnosis and that she has taken on a ‘project manager’ role in managing his health and progress.

“The biggest advice I would give to anyone with blood cancer is to take away all the negative thoughts in your mind. If you think positively then there is nothing to worry about!”

25-year-old Mellisa Chesterman from Tokoroa was mid-way through her post-graduate diploma in teaching at Waikato University when she noticed she was having difficulty walking up stairs and felt an ever increasing pressure in her chest.

My family thought I was run down from studying, while GPs thought I had some type of viral infection or glandular fever. It felt like there was an elephant sitting on my chest and I still couldn’t shake it after three months.

Mellisa saw a different doctor who had a feeling that things weren’t right and was concerned that she had been sick for such a long period of time.

Eventually she was admitted to hospital where her haematologist confirmed she had stage-four non-Hodgkin mediastinal large B-cell lymphoma.

“I didn’t know anything about my condition except that it was cancer. I immediately thought back to all the movies I had seen about cancer,” says Mellisa.

“When the doctor told me the diagnosis all I could think about was how devastated my family were going to be,” says Mellisa.

“There’s just my parents and my brother and I and we are all very close. That was the first time I remember being scared because I was scared for them.”

It was Mellisa’s then 16-year-old brother that inspired her.

“My brother Cody is my best friend and is a real typical Kiwi bloke who never cries. On the day of my diagnosis he broke down in tears. It was that moment that I knew I would fight this disease to be here for him.”

Mellisa was in Waikato hospital for the next few months undergoing six rounds of chemo. Although she says the staff were wonderful, it was still a tough time for everyone. Her first night in the ward was the hardest and she says that was when everything became real.

Mellisa describes her family as being “absolutely incredible” throughout her journey. Her grandma, who they call nanny, even sold her house and moved cities to be a support for Mellisa, while her mum was with her 24-hours a day and never left her side.

“Both my parents have great employers who let them work around me because they knew that our family is everything,” says Mellisa.

During the months that she stayed in Waikato Hospital, Mellisa did not spend one night alone and always had a member of her family staying with her.

As a result of her chemotherapy, Mellisa began losing her hair, something she initially found hard to face.

“My long hair has always been ‘my thing’ and when I knew I would lose it I really freaked out,” says Mellisa.

Her family once again rallied to support her with her nanny vowing to shave her own hair when Mellisa’s fell out.

To ease the process, Mellisa cut her hair into a short pixie cut and she surprised herself by liking the results.

It was very liberating to do something so drastic and I really didn’t expect to love it!

Six months after her diagnosis, Mellisa was given the news that she was in remission.

“When it sunk in that I really was in remission I was just in a state of euphoria!” says Mellisa.

She immediately rang her brother who was at school to tell him the news.

“My brother was just so happy to hear I was going to be ok,” says Mellisa.

“He was so amazing throughout my treatment and didn’t treat me any differently, I was still just his big sister and I am so thankful for that,” she says.

Mellisa says she feels so blessed to be in remission, however, she has a strong respect and appreciation for those still battling cancer.

“Everyone in the M5 ward were so beautiful and I met some amazing people during my time there.”

Along with the support of her family, Mellisa says that the staff at Waikato Hospital were “world-class” and were so sensitive and respectful. Amanda Foster from LBC was also incredibly supportive every step of the way.

Mellisa and her family are now even closer and she says she is so unbelievably thankful for all their support and encouragement.

“When I was in treatment I often felt very alienated, but I knew I always had my family. It was a time where we really learnt to appreciate each other,” says Mellisa.

“I have faith that I now have the chance to live my life as happily as possible which I plan on doing!”