Erin's story

 
As they strolled the Paris backstreets, searching for a cafe, Erin Moss struggled to keep up with her husband Norman.

The couple were enjoying a longed-for holiday. “When we reached the cafe I just collapsed in a chair.”

It was June 2007 and it would take four months, endless tests, scans, procedures, blood tests and several biopsies before Erin would learn she had Hodgkin lymphoma.

The feeling of an ‘obstruction’ in her throat and her swollen neck was diagnosed earlier that year as a side effect of her osteoporosis medicine and later as a serious thyroid problem.
 
Erin says: “All this time the swelling was spreading. Each surgeon and specialist I saw had a different name – lump, mass, tumour and lesion – and as it grew it shunted my thyroid and windpipe over to one side. By this stage, if I could have ripped it out with my bare hands I would have done.”

Norman recalls: “Towards the end I was getting quite angry and desperate.”

Then, on 15 October 2007 the doctors stated that Erin had Hodgkin lymphoma.

She admits: “I didn’t know what to say.  I asked the doctor if that was cancer and he said ‘yes’, but it was treatable. After he hung up I remember feeling numb. Norman just held me and said, ‘we will do this together’. He has been my rock.”

Within days, Erin learned her disease had reached stage 2B and was classified as Bulky and she was receiving chemotherapy at Auckland Hospital. By now, the mass was 15cm by 10cm, had severely enlarged her neck, completely encased the artery and was snaking down her chest.

Both Erin and Norman are full of praise for the public health system and the dedicated medical team who supported them. Norman says: “The nurses were really caring; they prepared us well and were always there.”

Erin found that keeping a diary and photographic record of her progress was particularly beneficial. She explains: “The photos meant I had a record of how much smaller the growth was becoming, which really helped me mentally. In fact, it started going down after the first treatment!”

During the six cycles (12 treatments) of chemotherapy over almost seven months, Erin slept most afternoons at her Botany Downs home, “and sometimes in the mornings too. I said to Norman that I didn’t think it was possible for a human being to feel so sick.”

For a few days it looked like Erin was going to keep her hair, but then it started falling out. “I hacked the rest off and ended up looking like Shrek,” Erin recalls. “But once I lost my hair I felt I could look the other day stay patients in the face. It was like a bond.”

Over the course of her treatment, Erin was admitted to hospital several times with fevers.
Then doctors discovered lumps in both her breasts – luckily the biopsies came back negative – and Erin found herself back in hospital to have a stent inserted in an artery after developing heart problems.

But one of her darkest periods came when another member of her family was diagnosed with a blood cancer. She remembers: “At first he was doing really well but on the day I found out I was in remission he told me his doctors were running out of treatment options. I felt so guilty. He died two weeks later.”

Erin, 47, has been in remission for some time now.  She has drawn great comfort from the support of the Leukaemia & Blood Foundation (LBF) and now exchanges regular messages with other patients on the LBF online forum, LifeBloodLIVE (www.lifebloodlive.org.nz). They chat about how they have taken up Sudoku to improve their focus and they share treatment tips and cyber hugs.

Erin says: “It took me a while to find the courage to ring the LBF then I wondered why I hadn’t done it earlier!”

She is also grateful for the “incredible kindness” of family, friends and even strangers. “I never let a day go by now without telling Norman and my family how much I love them.”

Erin adds: “Right from the beginning I have tried not to say, why me? Why shouldn’t it be me? I’m no more special than the next person. You have to give yourself permission to be a bit down at times, but, more importantly, permission to be happy and enjoy whatever little things come along.”