Updated October 20, 2013

Helen Muscat, a tireless cancer campaigner, died yesterday aged 57.

The following is an interview she gave Ariadne Massa in 2011 about her condition and her life.

 

Helen Muscat’s blue eyes burst from her sun-kissed complexion emitting a radiant energy that matches the enthusiasm and passion in her voice.

The ravages of chemotherapy are well masked and it is only a closer look that exposes pencilled-in eyebrows and thinning hair.

“I nearly shaved my hair off this morning, but I suddenly remembered I had the interview,” she says, shrugging off the side effects with a laugh.

Just one day before, she underwent a session of chemotherapy after the cancer resurfaced, but this time she has equipped herself with an arsenal of sugarless foods, exercise and a positive attitude bent on exterminating the disease, or at the very least forcing it into submission.

Ms Muscat, 55, has spent four decades working as a nurse in the UK and Malta, emerging as the face behind numerous causes and campaigns, journeying with cancer patients through their ravaging illness and pushing to change the system, which makes her illness all the more tragic.

Breast cancer is the most common cancer in Malta affecting nearly 200 women every year, with at least 70 succumbing to their illness. One in every 12 women will get breast cancer in their lifetime, and Ms Muscat was its next victim.

While others tell her cancer is fate’s cruel joke, she simply chastises herself for not recognising the signs of breast cancer earlier when it first struck seven years ago.

“I don’t think of it like that... I was just thinking how could I have got to this stage without noticing it? How could it have got this far?”

She had spent all her working life as a nurse, starting as a state registered nurse in a small hospital in the UK – where she met her husband-to-be Peter Muscat, then a junior doctor – and then landing the post of ward sister at the Kingston General Hospital in Hull.

The two had gone on their first date in February 1980, were engaged in April and married in Malta in July. She loved Malta from the moment she set foot here and felt embraced by the warmth of her new extended family.

It was a signal right from the start of the bounds of love they had to share and it would translate in to tremendous support when the going got tough many years later.

After the wedding the couple went to Manchester, but when they started a family they returned to Malta and never left. Manchester was quite lonely and she loved the closeness of everything in Malta, quickly planting roots, and setting her sights on nurturing her family and nursing career.

In the UK, where she worked in the general surgical ward, she had realised that numerous breast cancer patients who required terminal care were being put in a busy ward which she felt was not the right place.

“These patients were not getting the right care and we didn’t control their pain except with Brompton cocktail, a concoction of alcohol, morphine and everything, which meant they were doped up to their eyeballs just waiting to die. I felt this was not the right way to treat people who were isolated and so unwell,” she recalls.

When she came to Malta and was recovering from surgery in a similar ward she witnessed a parallel situation and realised this was an eternal problem. The situation instilled in her the passion to do what she could for cancer patients.

A few days after this, she spotted an advert urging people to attend a first meeting to do something about this. This was the beginning of the Hospice Movement and she and her husband went on to become founding members.

She remained with Hospice and trained as a palliative care nurse, working voluntarily for close to three years. But her passion to deliver results meant she was taking other people’s problems home.

She felt she was not coping in a positive enough way, although she loved what she did. It was her first insight into the connection of Maltese families, setting foot inside people’s homes, and instantly becoming a part of their family, which made it even harder to cope when cancer claimed the life of yet another victim.

When she stopped working with the Hospice to take a breather it was not long before she was roped back into the world of caring for patients. She was asked to help set up Zammit Clapp Hospital, focusing on the elderly and rehabilitation; a time she describes with excitement as working in “a true multidisciplinary team where the achievements were phenomenal”.

She still remained involved with Hospice and eventually joined Hilda Schembri and Laura Bajada to set up a breast care support group for clients there.

“Hilda was brilliant and a real inspiration. I still hear her to this day, keeping me on the right path.”

From there she went to work at St James Hospital, going on to serve on several committees – including the Monitoring for Breast Screening and the National Advisory Committee Breast Screening – eventually setting up the Action for Breast Cancer Foundation to work on lobbying.

The foundation is not just an action group for breast cancer survivors, but a women’s lobby group that includes as its main objective, the recommendations of the European Parliament to improve and upgrade the service in Malta.

Her motto throughout has always been: “I want to know what causes breast cancer; I want to see prevention rather than cure.” Her lobbying spirit is still alive and to date she remains the chairman of the foundation.

Being so involved in caring for other patients and pushing the cause for breast cancer awareness meant she neglected to nurture herself, postponing two mammograms because she was too busy.

She had had felt “this little pea-sized nodule” for a while, but one day seven years ago, as she was talking to her son, she felt a sharp pain on her right side. It was really sore and hard and she immediately knew it was something serious. Her husband, a doctor and psychiatrist, felt it and he too had a foreboding.

She booked a mammogram but when it came to waiting a week to do it she became nervous. Attending the cast party of a theatrical show her husband had just taken part in, her mind started entertaining morbid thoughts.

“I was looking at Peter surrounded by gorgeous girls and thinking, well Peter won’t have a problem finding somebody else because this is a killer. I was really down, negative, sad and lost.”

The next day she did not wait for her booking but went straight to do a mammogram. The scans showed an irregular shape, an indication it was cancer.

On the eve of Mother’s Day, she was wheeled into surgery, which was when the nurse inside her took over and she was instructing the surgeon what to do in a very clinical manner, urging him to carry on with a mastectomy but to leave her enough skin to do prosthesis if she wanted to. The fact she was surrounded by familiar faces and former colleagues helped her to face the ordeal.

She underwent chemotherapy against the advice of the oncology department because she felt that even if there was just a one per cent chance of helping her, she wanted it.

“The team at Boffa’s chemotherapy unit are amazing. They deserve a medal. I don’t mind going there... They’re wonderful and they always have been. They make the trauma bearable for everyone,” she says, bursting into tears as she stops to reflect on how the team is helping her.

After all the treatment she went into remission and carried on with her life, but exactly a year ago the ugly disease reared its head again. Ms Muscat had booked herself in for a PET scan, together with her friend for moral support. Her friend’s was clear, but her scan was covered in red where the cancer had attacked her chest wall, liver, ribs, neck, vertebrae and stomach.

“It was total disbelief. I thought that can’t be me; it’s impossible, all that cancer everywhere. It was advanced metastatic cancer. I went totally blank. I immediately asked what my prognosis was and the doctor said two years,” she says.

A year has passed since then, and she has tried to fight the disease with no carbohydrates, no sugar, plenty of fruit and vegetables, and a special detox drink every morning of two pulsed lemons in a processor with skin and all and mixed with olive oil, which she is certain helped shrink the tumours.

She believes sugar feeds the cancer, and points out that a PET scan involves a glucose-based injection to detect the sugar-hungry tumour cells. Whatever the case, the diet also served to better prepare her for the chemotherapy and she felt less sick this time round.

Three months into her chemo she underwent a scan and her cancer was disappearing, but the doctor urged her not to get too hopeful and warned her it would return. It did.

Four weeks ago, a routine PET scan revealed the cancer was back in her ribs, sternum and liver and she has had to start chemotherapy again. She wonders whether the occasional glass of wine and small bun she indulged in when she relaxed could have roused the cancer from its dormant state, but she does not dwell on this for long.

Instead she is focusing on healing her spirit, taking up Emotional Freedom Therapy and working through her issues of anger.

“I’m a very emotionally involved person, passionate about what I’m doing, so I’ve probably suppressed a lot of things over the years,” she sighs.

It was hard in the beginning because she describes herself as very controlling person, so letting go was not something she was used to.

“Before I became ill I had spent a lot of time being angry with various members of family about things that had happened in their lives, even though it had nothing to do with me...

“I’ve always been a strong person but emotionally I now have a much stronger will to fight this and to believe I can control this disease. But it starts with letting go of the anger and focusing more on the positive; like waking up every day and saying thank you for all the things you have.”

I’m sad because I don’t want to leave, but at the same time I believe there will be a spiritual presence, that I will still be close

Is she scared of dying?

“No, I’m not scared. I’m sad because I don’t want to leave, but at the same time I believe there will be a spiritual presence, that I will still be close... The hardest thing is for Peter and the boys,” she replies, adding that she has already written out what she wants for her funeral.

Ever in need to take control, she has instructed her family not to travel from England for the funeral but to organise a memorial service instead. She explains: “I don’t see why they should all come here. It’s one thing coming to visit me, but when I’m dead my spirit is free.”

However, her psychologist at Boffa Hospital has gently proposed she ask her family what they want instead.

“I told Peter I want to fight this but in the end I don’t want to prolong suffering. I have to weigh up the pros and cons for treatment. As long as I’m well I’ll continue, but if I reach stage where it’s becoming impossible I have to accept that’s the moment to let go. His way of handling this is to live for the moment,” she says.

“Peter’s suffering is probably one of the hardest things I have to deal with. He is the love of my life and he has given me so many really wonderful and happy years. My sons are so loving and supportive too. I tend not to talk about Peter’s incredible support and love because it really makes me cry uncontrollably. This is probably the hardest part of dealing with dying,” she confides.

But quickly changing the mood, she insists she feels too well to give up.

“I feel the cancer is being given another whack and I feel well and at peace. Being with people who really matter energises me. Everyone has to die. But I’m not ready yet.”