Melbourne mother of three, Karina Carrel, has written a frank and honest book that tracks her personal journey with Hodgkin lymphoma in great detail.
She believes the blood cancer she was diagnosed with in 2009 is often overlooked and downplayed and she hopes to help change this by shining a light on lymphoma.
Often described as the ‘good cancer’ because it responds so well to chemotherapy, Karina says this description can be difficult to hear from a patient’s perspective.
“Lymphoma is just as serious as other cancers, and it is still a battle to fight for life,” says Karina.
In her recently released book, Liberation, she shares her experiences and the challenges of being diagnosed with lymphoma, treated with chemotherapy and radiotherapy, and the emotional impact of the disease on her, husband Paul, their three children and her parents.
“It is common for people with lymphoma to be pushed away, ignored and treated as if they are over-dramatising their symptoms and condition, before being diagnosed,” said Karina.
In February 2009, after the birth of her third child, when Karina was 30, she started noticing small symptoms and just knew something was wrong, but it took six months to be diagnosed. During this time the lymphoma progressed rapidly, until she could barely swallow or lift her arms and the tumour in her chest was 8.6cm x 5.3cm.
She was told by a succession of doctors that her symptoms were due to a range of conditions, from the flu and a viral infection initially, to being depressed.
While trying to find out what was wrong, she suffered excruciating pain, lived on a series of increasingly strong painkillers and spent a lot of time waiting – waiting for results, waiting for more tests, waiting to be taken seriously, waiting….sometimes for weeks at a time.
In October 2009 Karina finally found out she had Hodgkin lymphoma – Stage 4B, which meant it had spread outside the lymphatic system and bone marrow.
In Liberation, Karina writes of her ordeal in great detail. She covers the disease itself, the symptoms and potential side-effects and steps readers through her treatment regimen over almost 12 months.
Throughout her book there are touches of humour and despite the uncertainty and the not knowing, Karina remained positive: “Besides the extremely long list of everything that could go wrong, chemo sounded like a breeze!”
She explains how she contributed to helping her body through the treatment and recovery by using complementary therapies to help strength her immunity and lessen the side-effects of chemotherapy and radiation, and she delves into the challenges of being in remission.
“Remission was something I had looked forward too for so long that I couldn’t understand the emptiness I felt once I’d reached it,” explains Karina who initially did everything she was advised against, exercising excessively, sunbathing herself to a crisp, drinking too much alcohol and eating loads of junk food.
Then she threw herself into Zumba® fitness, dancing to find herself again, to regain her confidence and lose the weight she’d gained, ironically officially becoming a Zumba instructor exactly one year after her first chemo treatment.
It was in January 2011, when her first PET scan following radiation indicated the lymphoma may have returned and she was placed on ‘watch and wait’, that she realised she needed to find a balance.
That’s when Karina made major changes to her diet and lifestyle, including dropping back the number of weekly exercise classes she took from 14 to two.
And when she got the all clear after her next scan Karina not only got a second chance, it gave her a new perspective on the meaning of her life.
Karina has been in remission since 2012. During her lymphoma journey she said the Leukaemia Foundation was a source of information and a major point of contact.
The day before starting chemotherapy, a support service coordinator called her “offering assistance with absolutely anything”, but having the support of family Karina declined the Foundation’s offer of assistance.
“The fact that they had no idea who I was, yet cared enough to call me was incredible. It was comforting to know I belonged to a group of people, that I wasn’t alone,” she said.
According to Anthony Steele, General Manager of Support Services at the Leukaemia Foundation, Karina’s book is a valuable resource for patients and their families and helps break down some of the misconceptions about lymphoma.
“Unfortunately, it is a common scenario across the world that it takes so long to get a diagnosis for their lymphoma, yet it is vital to get an early diagnosis to ensure the best outcome possible for the disease. Let’s hope your book sheds more light on this problem and helps things to improve!” says Anthony.
Liberation: Breaking the Chains to Survival and Freedom (Balboa Press) is available from the Leukaemia Foundation: free call 1800 620 420 or www.leukaemia.org.au.
For more information about Karina and her book: http://liberation-free.com/.