‘I’m screwed back’ if it comes

Around 21,000 Kiwis are living with blood cancer. Symptoms can be difficult to recognise, and experts worry that some people aren’t getting diagnosed as our health system tackles the impact of Covid-19. Hayley McLarin investigates.

Neil Brownlie has beaten blood cancer three times in a decade. The former electrician from Dunedin has overcome Hodgkin lymphoma, Burkitt lymphoma and acute myeloid lymphoma. Doctors tell him they haven’t known any other patient to have three different blood cancers.

But at 37, he’s had so much chemotherapy he’s been told he cannot afford to get cancer again, and his body won’t withstand any more chemo.

‘‘Unless they come up with a new treatment, I am kind of screwed if it comes back,’’ he says.

On any given day, around eight Kiwis will be told they have a blood cancer. It’s the fourth-mostprevalent cancer in New Zealand; deemed to be a hidden cancer because symptoms are deceptive and easily misinterpreted as a minor illness.

Diagnoses and treatments have fallen significantly due to Covid-19, according to Peter Fergusson, the CEO of Leukaemia & Blood Cancer New Zealand (LBC).

‘‘Globally diagnoses have dropped by approximately 40 per cent during Covid,’’ says Fergusson. ‘‘After the last lockdown, the number of diagnoses in New Zealand lifted dramatically, which is indicative of people delaying a visit to their GP or specialist for fear of unnecessarily exposing themselves to a risk of Covid.’’

Fergusson says the health system is barely beginning to catch up from last year’s lockdown.

‘‘We will have people out there that are undiagnosed, and that delay in being diagnosed may mean a difference for them in terms of how well they come out of this journey, because their treatment options may be reduced.’’

Brownlie was among those impacted by Covid, spending four months in hospital while New Zealand was in lockdown. Blood cancer patients are ideally given a transplant that is 100 per cent right for them, however when Brownlie desperately needed a transplant last year, overseas stem cells would not have arrived in time. Instead, he received a stem cell transplant from his younger brother Gavin, despite being only a 50 per cent match. ‘‘They basically gave me my brother’s immune system because mine just doesn’t recognise blood cancers to know to fight them,’’ Brownlie says.

Doctors hope that his brother’s immune system will protect him from the cancer, even though it’s not a perfect match.

‘‘I only had a 5 per cent chance of making it a year past transplant, and I have passed that now. I’m hopeful. The chance of success with stem cell transplants has really improved massively over the last 10 years.’’

As a new dad 10 years ago, Brownlie was diagnosed with Hodgkin lymphoma. He endured chemo and radiation for about six months to combat the aggressive stage 4 cancer.

Brownlie slowly recovered and returned to being the main income earner, and he and his partner Jodi had Nate, six, a younger brother for Luke, now 13. But five years ago he was diagnosed with Burkitt’s lymphoma. The treatment was much more aggressive.

‘‘I was in hospital for six months having chemo every day. I watched just about everything on Netflix and YouTube; it was mind-numbingly boring and a bit of a struggle, the first time, mentally.’’

He says ‘‘first time’’, because in January last year an all-too-familiar call back to the doctor delivered the news he had AML – acute myeloid leukaemia. That meant more chemotherapy, which got the cancer into remission.

‘‘But the whole goal was to get a stem cell transplant as they said it would be back within a year, and that would be it, because I couldn’t do any more chemo. I’d had the maximum amount of chemotherapy a person can have in their lifetime.’’ Brownlie has since paused his electrical engineering study to work on restoring his physical fitness, and enjoy time with his family after long bouts of not being able to see them while in hospital. He’s aware that partner Jodi juggled work and raising the boys while he was sick, and is grateful to LBC for helping support her.

‘‘It’s hard on families,’’ he says. ‘‘We’re not rich now but work isn’t really a priority when we don’t really know how much time I’ve got – although I am pleased that I have no sign of the cancer coming back.

‘‘We want to make the most of what we do have. I want to try to stay positive.’’

LBC’s Peter Fergusson says it’s concerning that blood cancer patients may not be able to get urgent treatment due to Covid emergencies, and that life-saving bone marrow transplants are being postponed due to significant resourcing challenges.

‘‘With an ageing population and blood cancers more prevalent in older people, the number of transplants is increasing,’’ he says.

Five years ago, 45 transplants a year was considered high for one transplant unit. This year in Auckland, there have already been more than 140.

‘‘Transplants are rapidly increasing, but facilities and resources are struggling to keep pace with this demand,’’ says Fergusson.

‘‘The resourcing challenge is compounded by a raft of issues including unfilled positions, difficulty recruiting internationally, reduced workforce due to close-contact isolation requirements; a loss of specialist nursing staff transferred to support Covid needs... We really are at a pinch point.’’

Transplants are moved to other DHBs around the country, where practical. However, Fergusson says capacity challenges are now prompting decisions about whether to give people additional treatment as a ‘‘holding pattern’’ to buy time. ‘‘That could have a dire effect on someone’s outcome if they don’t get a transplant when they should.’’

Fergusson says while Covid is an immediate threat, the impact of cancer is a larger growing

‘‘We will have people out there undiagnosed, and that delay may mean a difference.’’ Peter Fergusson, above

concern that cannot be ignored. ‘‘Cancer is this country’s largest killer,’’ he says. ‘‘Every year more than 12,000 people die from cancer. Leukaemia is the number one cancer in children; lymphoma is one of the most common cancers in teens and young adults. Blood cancers combined are the fourth-mostprevalent cancer.’’

LBC estimates it sees approximately 45 per cent of the 21,000 Kiwis living with blood cancer. However, it’s limited in how much in-person support it can offer during Covid alert level restrictions.

‘‘We are bound by the rules and restrictions of access at each DHB, and this impacts whether we can support families who have loved ones in hospital and whether we can be on the wards,’’ Fergusson says.

‘‘Often the challenge we have is that patients are in bubbles of one, because they’re fearful of being in family bubbles and picking up Covid. That leads to lonely people who are dealing with the daily challenge of transporting themselves to hospital for life-saving treatment while conscious these are places where they may be exposed to a range of diseases and viruses that would have a devastating effect on their compromised immune system.

‘‘Blood cancer patients are living on a knife’s edge.’’

A blood cancer diagnosis will often start with a call from your GP asking you to come in and bring your partner or a friend with you. It’s quickly followed by specialist referrals, tests, and anxiety.

‘‘A blood cancer diagnosis is overwhelming,’’ says clinical haematologist, Dr Richard Doocey. ‘‘There’s an incredible amount of questions going through a patient’s mind as they try to navigate the health system.’’

Doocey, the director of the stem cell transplant programme for Auckland and Starship Children’s hospitals, encourages patients to self-advocate for

their health care.

‘‘You need to ensure you are informed about your cancer, proposed treatment and prognosis by knowing what to ask, and what to take from that consultation,’’ he says.

He reveals the immediate question from patients is often: ‘‘How long have I got?’’

That’s a tricky question to answer, because statistics don’t tell what will happen to an individual patient. ‘‘If someone’s got an 80 per cent chance of the cancer being brought under control, we don’t know if you’re in the 80 per cent or the 20 per cent,’’ says Doocey.

Treatment options can include surgery, radiation, chemotherapy, immunotherapy, and stem cell treatment. What’s best for each patient can depend on whether the cancer is newly diagnosed, or a relapse. Doctors will also consider whether a patient has any other health issues that could impact on treatment.

Doocey impresses that there’s no such thing as a stupid question. ‘‘We have the privilege of being educated on this medicine and having our own clinical experience, but it’s all new for you,’’ he says. ‘‘Sometimes it will confuse you.’’

Doocey, who also works in private practice, says there’s nothing wrong with getting a second opinion.

‘‘If your roof needs fixing, you don’t take the first bloke who turns up,’’ he explains. ‘‘You get three quotes, and you choose the best one, but not necessarily based on cost.’’

The Health and Disability Commission’s Code of Health and Disability Services and Consumer Rights says a patient has the right to be fully informed of the options available, including an assessment of the expected risks, side effects, benefits and costs of each option.

For newlywed Naomi McRae, a blood cancer diagnosis at 29 also came with the devastating news she may not be able to have children. Her Hodgkin lymphoma came as a shock. She’d had extreme fatigue, often sleeping on the couch after work until husband Sam woke her for dinner.

‘‘I thought that I was just tired from a big year,’’ McRae recalls. ‘‘We moved back from London, bought a house, got married, and I started a new job.’’

She also had ‘‘the most ridiculously itchy feet’’, and eventually got blood tests that revealed her body was ‘‘fighting something more than just a common cold’’.

While waiting for a specialist appointment, McRae collapsed when shopping for something to wear to her best friend’s wedding. The North Shore Hospital emergency doctor delivered the news that she had advanced Hodgkin lymphoma, and a giant chest tumour had displaced her left lung.

‘‘My life as I knew it changed forever. I was suddenly thrown into a new world of blood tests, hospital appointments and cancer terminology.’’

McRae and her husband decided early on that they would do everything in their power to try and have children once her cancer nightmare was over.

‘‘We tried to preserve embryos prior to me starting treatment, but my body didn’t respond. I was far too ill for my body to do anything but fight the cancer.’’

She started treatment on Christmas Eve. ‘‘After six months of chemo and six weeks of radiotherapy, I was confirmed as in remission, which was just the best feeling in the world.’’

But McRae was told her hormone levels wouldn’t recover, and they weren’t going to be able to have children.

‘‘That diagnosis was in many ways harder; I felt like the cancer had robbed me of my future.’’

When the couple returned from their delayed honeymoon, McRae started experiencing issues that mirrored her blood cancer symptoms, and anxiety set in. At a scheduled appointment, her radiation oncologist gave her unexpected news – her blood results suggested she might be pregnant.

In May 2012 they welcomed Lauchlan, and then Owen 17 months later.

‘‘Being a mother healed some of those cancer wounds,’’ says McRae. ‘‘These gorgeous boys of ours are now nine and seven.

‘‘I know that I’m one of the lucky ones. I’ll never ever take it for granted. It shows that there is life after cancer; it can be everything that you ever dreamed of.’’

Grateful for the support she received from LBC, McRae used her HR expertise and patient experience to develop resources about employment and legal rights for patients dealing with employment situations due to their condition.

She formed a small team of PwC employees to develop the Work It Out programme that includes talking to your employer about your diagnosis through to looking for work after treatment.

McRae has been on LBC’s Consumer Advisory Board since it was formed in 2017.

She says: ‘‘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.’’