Patient Story Type: Lymphoma

More than alive – kicking!

“Why are these pesky mortals doing another medical procedure on me!?” This was running through Wendy Harrex’s mind while in intensive care. 

“I got really close to dying. I felt so awful, I was ready to die.” It’s a humbling thought. Wendy had spent an entire year feeling ill, with her doctor unable to figure out what was wrong. Endless infections, fatigue, and finally symptoms of what seemed to be acute onset rheumatoid arthritis.  

”I was referred to a rheumatologist.” On Christmas Day in 2017, before her test results came back, her condition suddenly worsened. She was rushed to hospital, where she was diagnosed with a lung infection – and follicular lymphoma. 

She wasn’t shocked or overwhelmed, but grateful that she finally had an explanation. “Christmas and January are a special time for my family and me, because I almost didn’t survive.” 

Her story includes alternating big scares and rounds of chemotherapy. “Now I’m on a low dosage regime of tablets. It’s chemotherapy that I take three days a week. That has transformed my life and I feel better than I have in four years.” 

In fact, just last summer, Wendy dusted off her e-bike, which she had previously been too weak to use, and completed the rail trail in Central Otago. 

Wendy had found it hard sitting on the sofa for months during 2018 while facing her diagnosis, and wondering what lay ahead. Here she gives credit to LBC – although it wasn’t straightforward at first. “When I first met the person from LBC in the oncology ward, I thought, what’s their job? Soothe the dying brow? I was a bit sceptical.” 

“But subsequently I have attended the patient seminar in Wellington, the Christchurch webinar; my partner has gone to LBC’s support group for carers (Support Persons Connect) and we’ve seen the development of a really good support group in Dunedin. Contact with other people living with blood cancer has been really important to me.” In short, she has learnt how meaningful LBC’s work can be for patients. 

For Wendy, life is for living – “Try to be positive. Believe that you’re alive and enjoy every day – that’s why I like to say, ‘I’m alive – and kicking’.” 

Fast Facts: Follicular lymphoma

• Represents around 20% of all non-Hodgkin Lymphomas 
• Gets its name from the lymphocytes arranged in clusters called follicles within the lymph node 
• Affects both men and women, but is slightly more common in women. 

We had a bit of a battle on our hands

Imagine – you’re in the bathroom, staring at your toothbrush, trying to figure out how to get it wet. Thirty minutes go by and you just stand there, blankly. It’s a simple task – why can’t you do it? Ross Baker says, “Because you’re that fried with the chemo.”

‘Fried’ was putting it lightly. Ross went through a staggering amount of chemotherapy in just his first session – over 100 hours.

This kind of disorientation was unfamiliar for a guy like Ross – a self-described typical Kiwi bloke into muscle cars, competitive golf and spending time with his family.

It all began one day when Ross was struggling at a golf tournament; something felt off. He went to the doctor and had blood tests done at 3pm in the afternoon. By 7pm, he was told to report to the hospital immediately.

“Within a few hours, they found all the tumours through MRIs and scans, and they basically told me to get my lawyer in to set up my will.” Ross was diagnosed with a very rare and aggressive form of double-hit lymphoma. He was told that he had only 5-7 days left in his life.

“I didn’t really understand it, because I had still been walking around. I thought…‘you can’t be well enough to walk around, and then just die?’”

Ross refused to accept this. His doctor said, “Well, what’s your reasoning?”, to which Ross replied, “Look mate, I’ve got too many people I want to p*** off, before I die!” His doctor just looked at him, and burst out laughing.

Ross must have been doing something right – as he survived well beyond day number 7. It was a good thing that he had a sense of humour, because it was only going to get harder from there. “It was like bang, bang, bang. I basically spent from October until New Year’s Eve in hospital, in and out with treatments.”

Bang.

One month after his diagnosis, it was his daughter’s 14th birthday. He was determined to be well enough to buy her a present, because suddenly, every single day, moment and gift could be their last one together.

Ross bought her a jewellery box for keepsakes. It contained mementos, like the identification band she was given in hospital when she was born.

“The day of her birthday was tough. I broke down that night. I was quite upset.”

“We got some helium balloons, and my family wrote their own thoughts and messages on them, and let them go. It helped everyone. That’s when we realised we had a bit of a battle on our hands.”

Bang.

One of the hardest parts about coping with his blood cancer, was managing the feelings of the people around him. “I had to ask some friends and family to give me space, as I felt all they wanted to do was memorialise me, by crying and taking photos for their memory books”

“You get people visiting and they’re like, ‘oh, what have you got?’ and they’re not doctors. Well…if you’re not a doctor, then just say you can’t help. And other people say, ‘how long have you got to live?’ and it’s like, ‘what, do you want to book your day off work now?”

“Come on, guys. I’m fighting for my life here, and you’re asking me when I’m gonna die?”

Bang.

Ross was introduced to LBC Support Groups, through LBC Support Services Coordinator Natasha. While he found the groups useful, he needed his partner Michele with him for support.

“Because when you’re in there, it’s like white noise. Michele would takes notes and then we would talk about them a couple of days later”

“I was in insane pain. I wasn’t moving around like I was used to, I was vomiting. I wasn’t focussed on listening. I was focussed on breathing, trying to get food in, sleeping. Trying to get through the pain.”

Ross took a deep breath, he rested, and he got through the pain. Eventually, the initial battle was won, and he came out the other side of his lymphoma. He is doing better today, but he knows that there’s a chance his condition could worsen.

“My energy levels are down, so I use a golf cart on the course now. I can’t walk around. I’m forcing myself to do some building on the house, but that takes forever. But, I can do stuff. I can walk the dog, I can vacuum the house. I can do the dishes.”

Being able to do the little things makes a big difference for Ross, like brushing his teeth or cooking for his partner. And, the meaningful stuff too. Like celebrating his daughter’s birthdays.

He’s also back on the golf course, bringing his cancer journey full-circle. “I really pushed myself to do that. I won the club champs, four months after I finished treatment. I won by ten shots, with 65, 65”

Fast Facts: Double-hit lymphoma

• An aggressive form of non-Hodgkin lymphoma
• Affects the white blood cells called B-lymphocytes or B-cells
• Relatively rare and makes up approximately 14% of aggressive B-cell lymphomas

Overcoming all Obstacles

In early 2020, Mile Nafatali had soreness in his shoulder. The 22 year-old, who worked as an Administrator at a medical centre, just thought it was from playing sport.

When he began coughing up blood, he decided to get it checked out. After a visit to the GP, they found a lump in his chest. A biopsy a few weeks later confirmed it was Primary Mediastinal large B-cell lymphoma Stage 4B.

The diagnosis came as a huge shock to Mile and his family: “I was quite healthy, active and feeling well. Because the cancer was mostly in my bones, I wasn’t in pain… I couldn’t believe it.”

Over the next six months, he had six rounds of chemotherapy. A scan to check its progress found the chemo wasn’t working, so he was given a higher dose of three more rounds.

After nearly a year of chemo, Mile needed a Stem Cell Transplant (SCT). By the time he travelled from Dunedin to Christchurch with his mum and sister, he could barely walk. A PET scan showed the lymphoma had progressed rapidly. His SCT was cancelled.

Mile remembers the moment clearly:

“My doctors said I had no more options left; I only had a few months to live. I was in total shock. I was put in a wheelchair, because they said the cancer would break my bones. I was sent home to be with my family and basically prepare to die.”

Despite the devastating news, Mile’s family were not giving up. After meeting to discuss what they could do, they immediately reached out to the top clinics around the world to see what their options were.

Eventually they got in contact with the Peter McCallum Cancer Research Centre in Melbourne. Doctors there offered a potentially life-saving treatment called CAR T-cell therapy, which involves taking blood and modifying the “T-cell” from the white blood cells before reinserting it into the blood system.

“The only catch was the cost,” Mile laughs. “I thought it wouldn’t be possible. But incredibly, my doctor helped push through special funding to cover the costs. I was so thankful.”

His excitement quickly shifted to worry. Just as he was preparing to travel to Melbourne, New Zealand went into lockdown.

“That was on Friday, and by Tuesday, I needed to be in Melbourne to start treatment. Since flights weren’t available, the only way I could get there was a private Medivac helicopter, costing $80,000.”

He reached out to LBC who sprang into action straight away.

“It was incredible – within a few hours, they reached out to Seven Sharp, who were very supportive and geared up to run a story to raise the funds. But then David Downs, a lymphoma survivor himself, stepped up. He found some private donors to cover the cost…I couldn’t believe it. I was headed to Melbourne with my mum.”

In March 2020, Mile started two long months of treatment, and then waited for 30 days to see if it worked. His partner, and sister came out to support him and were there on the day he got the good news:

“The scan showed the cancer was completely gone. That was the greatest day ever.”

On May 1st, 2021, he headed back home to Dunedin and reunited with his family.

Today, Mile is in remission and is focussed on staying healthy:

“Physically, a year and a half of chemo and treatments took its toll. I’m currently in rehab with my physio, getting my body into shape and regaining lost muscle. At this stage my goals are to get back into work full time or possibly going back to study.”

He’s looking forward to spending more time with his friends, celebrating birthdays, and going on trips. He joined LBC’s Consumer Advisory Board to give feedback on support services and resources. A new David Downs documentary featuring Mile’s inspiring story is coming out soon.

Mile has a new outlook on life, and credits his resilience to the amazing people who helped him get through:

“I realised how precious life is, how we take things for granted. I’m so grateful for the huge amount of love and support from my family, my doctors, and the incredible LBC Support Services team who looked after and cared for me.”

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 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.’”

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’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’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 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.