Celia

Where flowers bloom, so does hope

Five years ago, on her daily bike ride to work as an ESOL literacy tutor, Celia Hope felt a throbbing discomfort in her abdomen. She didn’t take too much notice of the pain; she was fit from cycling for many years.

But over the following weeks, she experienced dizziness and bloating when she ate.

“I couldn’t eat much at mealtime. I was so uncomfortable I told my husband, Tim: ‘something isn’t quite right; I think I need to get this looked at’.”

After Christmas, her GP ran blood tests and sent her for an ultrasound which picked up the enlargement of her spleen and liver. From there, she was referred to haematology and had a CT scan and bone marrow biopsy.

“Within a month, I was diagnosed with splenic marginal zone lymphoma (SMZL). It’s a mouthful.”

SMZL can be very difficult to diagnose as it’s rare (accounting for roughly 1% of non-Hodgkin’s lymphoma cases) and it can look like other types of lymphoma.

“That was a shock. It was difficult, because my mother’s health was deteriorating, and she passed away within a couple of days of my diagnosis. A double whammy.”

After immunotherapy treatment, the haematologist told Celia she was in remission. She spent the next year in relatively good health.

“In 2018 I felt really good. It was coming up to my 60th birthday, and I thought, I want to do something significant. I did a fundraiser for LBC! My plan was to cycle, cumulatively, 600km over the month of October, and raise $2,000.”

Celia surpassed her goals: “I cycled 700km and raised almost $4,000.”

But at the end of 2019, the bloated feeling came back. Another CT scan showed her lymphoma had resurfaced and she went back into treatment.

Tim was in his element as a carer and provider – giving her injections and contacting LBC Support Services when Celia couldn’t. They went to LBC support group sessions together and were grateful for the visits from Matt in the Hamilton Support Centre. But it was Tim’s positive attitude – and Celia’s – which helped her the most.

“Tim believed I would get through it, he was there to support me and would often leave me little encouraging notes.”

One of the hardest parts of her treatment was that she couldn’t join Tim for the bike rides they loved so much. “He’d pick flowers out on his rides and bring them home for me.”

Flowers were part of a tradition between Celia and Tim, who met on a bicycle tour across Canada in 1997 – back then, Tim helped Celia decorate her bike with daisies he had picked.

“He’s amazing. He was always there when I had the infusions. Once we got into lockdown, he couldn’t come anymore, but he was always there to pick me up – in both senses of the word.”

But on a Sunday morning in June, Celia’s life turned upside down once again:

“I was still trying to cycle a bit. We biked our usual route to the farmer’s market in Hamilton. On our way there, Tim was hit by a truck and was immediately unconscious. He spent five days in the hospital. He didn’t make it.”

“That was my biggest tragedy, yet I still had to get through treatment – that was my focus. I knew that Tim would have wanted me to do that.”

The grief was overwhelming, and chemo left her with terrible wrist pain from the IV. But Celia’s two brothers, cousin, sister, neighbours, friends, her dog Lucky and the LBC team gave her the support she needed.

After Tim’s death, Celia got a phone call from Zoe, an LBC Support Services Coordinator:

“That was just amazing. She was so caring. She helped me through the last treatment and put me in touch with the nurse specialist that I felt most comfortable with.”

Today, Celia feels healthy and positive about the future, and hopes to get more involved in advocating for cycling safety.

“At the end of January, I had a memorial gathering for Tim in our garden and had a memorial seat made. It’s outside our house, on the roadside and daisies are just starting to bloom beside it”

Naomi

Naomi Stephenson was helping to care for her dying mum in June 2019, which would understandably be a stressful time in anyone’s life. However, the hits kept coming when a lump appeared under Naomi’s chin, and her journey with blood cancer began.

“It’s been a comfort to know that Mum never knew, as she would have been upset, but I ended up being diagnosed with follicular lymphoma. My mum died on June 26th, and I was diagnosed on August 2nd.”

Naomi then underwent CT scans to determine how advanced her case was.

“I was either stage three or four, but they weren’t sure. If it’s in the bone marrow, it’s stage four, but you need an invasive procedure to find that out.”

Naomi’s oncologist decided that because he would recommend the same treatment for stages three or four, the bone marrow biopsy was unnecessary. However, the CT scan could reveal the spread of the disease.

“It was above and below my diaphragm. The biggest one was tucked into my pelvic bone, and it was six centimetres in size.”

Because follicular lymphoma is a slow-growing form of lymphoma, you may be placed on ‘watch and wait’, also called ‘active monitoring’.

“That’s hard for people to understand because you tend to think with cancer, that you take care of it, and that’s it.”

Naomi was curious about when treatment might be required, so she had a chat with her oncologist shortly after her diagnosis. When pressed, he estimated she might need treatment in one to three years. Unfortunately, her cancer progressed quicker than that.

“Six months later, I had CT scans, and it had grown and spread quite a bit, so just into lockdown last year, he recommended treatment. The largest tumour was 8 cm.”

Naomi says that going through treatment in a COVID-19 world was a double-edged sword. On the one hand, it was scary as she was immunocompromised during a pandemic. However, it was also protective, as she was not out in the community while at risk.

Thankfully, Naomi is now in clinical remission.

When asked about the support that she received during her cancer journey, Naomi says that much-needed information managed to come at the right time, and she is very grateful for the support from LBC.

“I received a link to a new fact sheet that had come out through LBC, and it was titled ‘Chemo Brain’. It was just like reading a tick list.”

When someone is diagnosed with cancer, it is not uncommon for people to want to share their knowledge and thoughts in the hope they are helping. This was no different for Naomi, but she shared a great takeaway from her journey that is worth noting,

“Many years ago, the first midwife that we had, had given me some advice that’s been useful in lots of ways in life. She said, ‘taste everything but only swallow what’s good for you.’”

Neil

Neil Brownlie has recently finished treatment for acute myeloid leukaemia (AML); but he has faced more hurdles at age 37 than most people encounter in a lifetime.

The first occurred ten years ago when he was diagnosed with Hodgkin’s lymphoma.

“I did some treatment, but I wasn’t staying in hospital or anything like that. I went every couple of weeks to get some chemo and radiation.”

Only five years later, cancer reared its ugly head once again.

“I got Burkitt’s lymphoma, an aggressive form of non-Hodgkin’s lymphoma, and I had to stay in hospital to treat that. I was only getting chemo at that time, but I was in hospital for around six months. It was a pretty long stay.”

After surviving two different cancers, Neil was facing issues with his employment.

“Before I got sick, I was working for myself. But now I’m not quite up to the physical rigours of what I had been doing.”

When speaking about LBC, Neil says that this was an area where he could lean on Deb, the Support Services Coordinator in Dunedin, and her team for advice and support.

“With just my partner working, it was difficult, especially when I was the higher income earner. The financial support LBC gave to my family, like food and fuel vouchers, really helped.”

In January of 2020 – Neil was back in Dunedin Hospital undergoing even more chemotherapy. This time, the diagnosis was different. Although he’d already overcome two forms of lymphoma, he was now being treated for AML.

“I went in and had treatment for about four months, and then I had to go and get a stem-cell transplant. For the stemcell transplant, I went up to Christchurch Hospital and stayed up there for just shy of four months as well.”

While receiving treatment for AML, Neil encountered a unique problem. Throughout his three rounds of cancer, he had already had the maximum amount of a number of chemotherapy drugs that one person is allowed to receive in their lifetime. Yes, this is something that can happen in New Zealand.

“They kind of just gave me what chemo they could but kept dropping them as I had reached their limit.”

On top of all that, Neil’s most recent treatment was happening during 2020 – the year COVID-19 spread around the globe.

“When the country went into lockdown for six weeks, I wasn’t allowed to leave my hospital room or have visitors, which included my wife and kids. Before that, I would walk around the hospital ward and go for a wander outside occasionally, but I wasn’t allowed to leave my room for those six weeks. So, that was an extra challenge.”

It was while the nation was facing the global pandemic that Neil underwent his stem-cell transplant.

“They got rid of the cancer before I even went to Christchurch for the transplant. The problem was, because they couldn’t give me all of the chemo drugs; there was no way it was going to stay away.”

Amazingly though, he has come out on the other side and is now only on the necessary post-transplant medication.

“I have had no sign of cancer coming back.”

Neil’s story is one of hope and focussing on the positive, but also thinking outside the box. During all of this journey, Neil had to re-evaluate what his next move could be workwise, as he could not work as a qualified electrician due to the physical nature of the job. This didn’t stop Neil. What he did was head back to school to upskill his knowledge and qualify to do something new.

“Id looked into studying, not sure what I was going to do. I didn’t want to throw all of my electrical experience out the door. However, it just so happened that since there is such a shortage of electrical engineers in the country, the Government made it so that the course is free for the next two years. It saved me about 10,000 dollars a year in fees. So basically, when I saw that, I was like, this is my opportunity.”

Armed with a new lease on life, Neil says there is another major factor in tackling challenges as they arise.

“I believe that attitude has a large chunk to do with success. The worst-case scenario is always there, but if you dwell on it, it creates a lot of anxiety, whereas if you let things play out, it usually ends up not being as bad as you thought it was. You’ve got to try to stay positive.”

Laura

Laura Bonney was eight weeks into her nursing career when she was diagnosed with blood cancer.

Laura’s path to a diagnosis started in August of 2017 when she couldn’t shake a particular symptom:

“I had just had itchy skin for months and months. I had been treated for skin infections; he treated me for scabies. He was like I don’t know what is going on, but you know your body.”

Her GP ran tests, but nothing caused the alarm bells to sound for her doctors until she went back in December with lumps in the front of her neck.

After running various tests, with nothing coming back abnormal – Laura’s doctor referred her to a surgeon in January for further biopsies.

“By the time I actually got an appointment with the surgeon, it was the end of February. It was two weeks from the time I saw him to when he diagnosed me with Hodgkin’s Lymphoma.”

When asked about her diagnosis, Laura admits it was scary but chose to look at her cancer journey as a positive force in her life. She used the time to reflect and ask herself some difficult questions. The one that sticks out for her was the simple, yet challenging question;

“If this was my time, would I be happy?”

That is a sobering thought for most people – but it is the reality that cancer patients face every day.

Fortunately, Laura responded well to chemotherapy, is in remission, and completed treatment in September 2019.

When asked about Leukaemia and Blood Cancer New Zealand (LBC), Laura describes it as a “family”.

“The youth and young adults group has really brought together a group of people that I can chat to who have dealt with something similar. They might have a different diagnosis or might still be going through treatment but we’ve all been there. I still go to the youth events, and I think that really became my cancer community.”

Laura says that when her Support Services Coordinator, Rochelle Mills, mentioned the educational sessions that LBC offer, she jumped at the opportunity.  She highlights one in particular that addressed the process of getting in contact with Work and Income New Zealand (WINZ) to apply for a disability benefit.

“I was only working part-time, and I found it so difficult to navigate. LBC had this education session where they told me to speak to this person who is their liaison with WINZ, and that they would talk to me about what I was eligible for and what LBC could help me with. I was like, oh, amazing!”

It is support like this that is at the heart of what LBC do.

“You don’t know what’s around the corner. I think contributing to LBC is so important to me now because by doing that, you are helping build a community for people like me who felt so lost and so alone.”

Kirsty

Kirsty’s blood cancer journey, like so many others, began with a seemingly unrelated health issue – she had a nasty throat infection called Quinsy, Kirsty explains: “I ended up in hospital but when I got home my neck kept  swelling so I kept pushing for an investigation.” 

Kirsty had an appointment with a consultant at Christchurch Hospital, who gave her the bad news – she had Double-Hit lymphoma which is a type of Non-Hodgkin lymphoma. Kirsty would need to start chemotherapy straight away. She was put in touch with Matt from LBC who gave Kirsty a call: “I was in the supermarket carpark when he phoned and it was the first really practical, knowledgeable help I got. I remember getting off the phone and feeling relieved because there was someone who was there to help me.”

Matt was able to walk Kirsty step by step through what lay ahead: “When you start chemo, you feel like you’re stepping into the unknown and for me knowledge is power, so the information Matt was able to provide helped a  lot. Chemo is really complicated, you have one appointment with your consultant for 30 minutes and there is so much you miss. My consultant was insanely busy so having Matt to explain and clarify made a big difference.”

Matt was also able to help provide support to Kirsty’s ten year old son Sam who was dealing with a lot of grief and anger. Matt helped Kirsty find a counsellor for Sam and also organised for them to go a Breakers basketball game as a treat: “There was no way we could have afforded to do something like that and it was so great for Sam and me to have a break from all the hard stuff and just have some fun.” 

Kirsty finished her chemo in February and initially all seemed to be going well: “I’d just started to feel better again, not so fatigued and my fingernails and hair were starting to grow back, but then I started to have fever and  night sweats and that was a catalyst for some more tests.” 

Kirsty had to face an incredibly difficult meeting with her consultant who confirmed she had relapsed: “I walked around in a daze for a day or so and then rang Matt  and had a good talk to him – he was incredibly supportive again. I wanted to get my head around things and get my game face on so I didn’t frighten my friends and family.”

Matt was able to talk through the new treatment  plan including stem cell transplant (SCT). He was also able to offer help with grocery vouchers when Kirsty really needed them: “Vouchers were so helpful – one of the worst parts of cancer is the overwhelming financial stress if a small thing goes wrong, like needing a new tyre, it is a huge problem. I had to call on him a few times and he was able to give me a grocery voucher – I could feed everyone that week.”

Kirsty attended a couple of LBC’s support group meetings which she found inspiring, she is also working on strengthening her resilience: “When I was first diagnosed I tapped into Lucy Hone’s information on resilience. I’m looking on the bright side, enjoying  the moments and being grateful for what I have – it’s how you face challenges that counts.”

Julian

Julian’s positive attitude and optimistic outlook on life has helped him get through his lymphoma despite some set-backs along the way.

Two years ago Julian found himself in Middlemore Hospital undergoing surgery for a blocked bowel. Nine hours later his surgeon delivered some unexpected news, Julian explains: “When I woke up from the anaesthetic the
surgeon said “we’ve unblocked you but we’ve found something else” – I had Non- Hodgkin lymphoma. The following morning the consultant stuck around to help tell my wife and son – that was the hardest part, it really threw them.”

The haematologist recommended Julian have radiotherapy and start chemotherapy as soon as possible: “I had a good hit of chemo first time around and after that I had a PET scan to see how things were going. They said that it had reduced but another scan a bit later showed it had come back again – that threw me into a bit of a tailspin but I believe you have to play the cards you are dealt in life so I didn’t let it get me down too much.”

Julian’s  haematologist recommended more chemo followed by an autologous stem cell transplant (SCT) which he had in Auckland Hospital: “That seemed to work but just lately they did a scan and saw the lymphoma may have come back again in my chest. They put a camera down my throat and took samples – at this stage they haven’t found any cancerous cells in the lymph nodes around my windpipe but they want to keep an eye on it.”

Julian is having monthly follow-ups and is thankful for the support he has from his family and from his employer Nilfisk Kerrick, who has been there for Julian and his family right from his first diagnosis: “Everyone is keeping an eye on me – before I could get away with murder but now I can’t! I try to keep things as normal as possible, carry on working and spending time with family, plus I am an official with Athletics New Zealand and my wife encouraged me to keep that going.”

Julian also appreciates the support he has received from Natasha at LBC who has been able to give him relevant, helpful information, as he explains: “It’s an interesting journey, there are challenges along the way but I’ve met a lot of great people going down this path. Being diagnosed was a kick in the pants but I believe in the old saying ‘Sh*t happens!’. You’re only here once so you’ve got to get out there and enjoy life and do what you can.”

Ian

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.

Paul

In 2007, Paul Left visited his GP about a small lump under his chin. Paul didn’t see or feel any other signs that he was unwell, so when a needle biopsy came back showing large diffuse B cell lymphoma, he was shocked.

“After a CT scan and bone marrow biopsy, I was diagnosed with stage four lymphoma. It was aggressive and widespread, and I needed treatment. From there, everything happened fairly quickly,” says Paul.

Paul went through six courses of a chemotherapy treatment called R-CHOP which went well, although there were delays because his white cell count was too low at times. He spent a few days in hospital with an infection during the treatment. A follow-up CT scan showed a good response to the chemotherapy, and he was optimistic.

Three years later, Paul’s doctor found another lump in his chest cavity. After a series of biopsies and a chest operation, he was diagnosed with indolent follicular lymphoma.
“The bad news this time around was that I was told indolent lymphoma is a chronic disease. It was slow growing, but incurable,” says Paul.

After a month-long series of daily radiotherapy sessions, a CT scan showed the tumour had responded well. Paul went back to regular check-ups with his doctor to monitor his condition.

Five years later in 2015, Paul’s doctor ordered follow-up scans and biopsies, which showed the tumour had grown again, and the lymphoma had spread to his lymph nodes.

“I went back into treatment, and this time I underwent six courses of a different chemotherapy treatment called R-CVP,” says Paul.

Towards the end of treatment, Paul’s medical team recommended he then have an autologous stem cell transplant.

“To be honest, it was a very hard decision. I was told the transplant wouldn’t cure the lymphoma, but could give me a greater time in remission. I also knew there were risks involved, and I felt physically exhausted after six months of chemotherapy.”

A friend put him in touch with someone who had gone through a stem cell transplant, which helped him weigh up all his options.

“She was fantastic because she didn’t gloss over the bad bits and was positive, but realistic about what to expect. This was very helpful!”

Deciding to go through with the process, he spent three weeks in Auckland City Hospital in April 2016 having the transplant.

“I thought I’d managed my previous treatments quite well, but I found the transplant really gruelling. I was impatient to feel well again, and I felt like the recovery progress was frustratingly slow,” says Paul.

“Exercise was difficult at first, but gradually my strength and fitness returned.”

“My partner Caroline took five weeks off work to care for me while I was in hospital and afterwards. It was a difficult time for both of us, but she was very supportive through it all,” says Paul. “And the staff at the Haematology Unit were very professional throughout the process.

“I’m also really grateful to LBC – I’ve found their visiting speakers really interesting, and Support Services Coordinator Tim has been a great support at times when I needed to make treatment decisions.”

Eighteen months on, Paul is able to see the huge amount of progress he has made and is happy to be feeling well again.

“I’m enjoying time with my friends and family, and I’m even able to run around after my two grandsons when they come to stay. My work has now taken a back seat, and I’m more interested in pursuing my interests: playing guitar and bass in several musical groups, bush walks and reading.

“I’m looking forward to more travel too now that I’m feeling up to it. I’m very grateful to have this extra time at this stage of my life!”

Sonja

In 2009, Sonja White found herself dealing with enlarged lymph nodes all over her body. For 18 months, she went back and forth to her doctor who thought her lymph nodes were enlarged due to the constant infections she seemed to be having.

While seeing another doctor for an unrelated issue, Sonja pushed to find out more information about the lumps continually popping up.

After visiting a specialist and undergoing a bone marrow biopsy, Sonja was finally diagnosed with Non Hodgkin follicular lymphoma.

“Looking back, I realised I had been losing energy and the lumps were starting to get uncomfortable, but other than that I wouldn’t have known anything was wrong,” says Sonja.

Sonja was told she did not need treatment straight away, so she was placed on active monitoring. She underwent tests every three months.

“I didn’t actually tell anyone when I got the first diagnosis because there really didn’t seem any point when I wasn’t in treatment yet, and I was still working as normal,” says Sonja.

After monitoring her condition for 18 months, Sonja started treatment at Palmerston North Hospital. Every few weeks Sonja had treatment and says it was a sobering experience seeing others at different stages and watching the lovely nurses running around looking after everyone.

Sonja took leave from her job as a teacher to have her treatment and would sit in bed doing school reports and files trying to keep up with everything, but eventually she knew she couldn’t manage it.

“I didn’t want to leave work, but I just ended up with no energy so my lovely class had a relief teacher for the last two school terms of the year,” says Sonja.

Treatment went well and Sonja was eventually in remission, but she knew there was a chance she could relapse. Twenty months down the track, Sonja became unwell again. She was told her cancer was back, and tumours were growing in her abdomen. After nine weeks of one treatment, Sonja’s body didn’t respond well so she was given a different treatment.

After the second treatment, Sonja underwent a stem cell transplant which she says was a fascinating process, although it was not a great experience to go through.

“A friend of mine had a stem cell transplant so I had some knowledge going in to it which helped, but I still think the treatment is worse than the disease itself.” says Sonja.

“I lost 14 kilograms, all my hair and was a pale imitation of myself,” says Sonja.

Initially the stem cells refused to take hold and grow but after four months, and just in time for her daughter’s wedding, things progressed and Sonja felt herself getting stronger with the support of her husband David and her family and friends.

“David is a stoic, practical man and he ran around and did everything while I was recovering, while he was working full time,” says Sonja.

“I think it must be very hard for partners who go through this journey. I’m sure he was worried, but being practical was his way of handling things,” says Sonja.

After attending general cancer support groups, Sonja found it hard to find others who were also diagnosed with a blood cancer until she got in touch with Leukaemia & Blood Cancer New Zealand (LBC).

“When I attended my first LBC support group in Palmerston North, I walked in and the whole room was just buzzing! Then I was so pleased to find two other woman with the same blood cancer as me, and it was so great to know I could talk to them.”

Sonja decided not to go back to work full time and instead she spends her time volunteering at a local school, tutoring at a local adult literacy programme and cuddling her new granddaughter.

Throughout her treatment and recovery, Sonja met many different people on their own journeys and says there were others without family or transport or support like hers.

“I can’t complain because there are so many others going through tough life situations too,” says Sonja.

“Life still goes on no matter what you are dealing with, and you just have to go with the flow.”

Naomi

Naomi McRae had never even heard of LBC until she unexpectedly was diagnosed with Hodgkin lymphoma just before her 30th birthday in 2010.

“LBC’s Auckland Support Services Coordinator at the time got in touch with me to see how I was going and that’s where my relationship with LBC all started!,” says Naomi.

Having an LBC Support Services Coordinator popping up to the ward or day stay to say hi, drop off magazines and just having someone to talk to who understood what she was going through made all the difference for Naomi, while she was in treatment.

Naomi received the incredible news that she was in remission in August 2011 and she decided to commit to running a marathon to fundraise for LBC and give something back. Her plans were derailed when she started feeling nauseous and thought she was unwell again only to be told that astonishingly she was pregnant. This came as a shock to everyone since Naomi had been told it would be unlikely she would ever be able to have children due to her treatment.

Naomi’s son Lauchlan was born in 2012 and not long after, her second son Owen was born.

Receiving a diagnosis of blood cancer is life changing and for Naomi, it meant she thought a lot about her values and what was important to her. These thoughts led her to a job change within PwC moving from HR into the PwC Foundation where LBC is one of the core charity partners.

This career change saw Naomi learn a lot more about what LBC does and the many ways they are able to support patients and she began to think how she could offer her own support.

“PwC were amazing when I was receiving treatment and I was able to go back to work and do what I felt comfortable with, however I always knew that many other patients were not in as fortunate situations,” says Naomi.

Naomi saw a gap where she could use not only her career knowledge and expertise but also her experience of being a patient to develop information and resources about employment and legal rights for patients dealing with employment situations due to their condition.

Naomi formed a small team of PwC employees and together they developed the ‘Work it out’ programme which covers everything from talking to your employer about your diagnosis through to looking for work after treatment.Naomi then presented this information in workshops at LBC support groups around the country and also at the 2017 Blood Cancer Patient Forum.

When LBC’s first Consumer Advisory Board was formed in 2017, Naomi was asked to join to contribute her unique perspective to LBC’s strategic planning alongside other patients and carers.

“Being on the Consumer Advisory Board has been so eye opening for me. I’ve been able to get a real insight into the challenges LBC faces and it’s been great to be able to give my recommendations to LBC to help them continue to improve and develop their resources,” says Naomi.

While developing the ‘Work it out’ Programme and being involved with the Consumer Advisory Board,  Naomi decided to tackle the 1103 steps of the Sky Tower for the Step Up Sky Tower Stair Challenge and raise as much money as she could for LBC with a team from PwC.

Although her family, friends and colleagues were incredibly generous, it wasn’t easy for Naomi to look back on her own diagnosis and share her story with those who didn’t know her at that time of her life.

“It was the hardest physical challenge I had ever done and it was tough re-visiting it all but because I know all the ways that the money helps LBC it really was all worth it,” says Naomi.

Naomi recently learnt about another aspect of LBC when she joined the Leukaemia & Blood Cancer Research Unit Governance Board at The University of Auckland.

From being a patient receiving support, fundraising money to provide support for others through to sitting on the board being able to represent patients and understand how research money is being used felt like a full circle for Naomi.

“It’s nice to be at a point where my own diagnosis doesn’t consume me and where I am in a position personally and professionally to give back and help pave the way for other patients,” says Naomi.

“What I now do at PwC and the work we do for LBC really aligns with my values and it’s a huge privilege to continue working so closely with LBC.”