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Shine the Spotlight on Secondary Breast Cancer

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Wednesday is my music day. After tea and muesli in bed, I do my breathing and warm-up exercises in the shower. No one can hear me because my tiny bungalow is sound-proofed on the exterior by tall thick hedges - a legacy I'll leave, along with the new kitchen and bathroom, central heating, double glazing, and the loft conversion for my daughter.

I say legacy, because in March 2005 I was diagnosed with breast cancer. They told me it was secondary breast cancer because it had already spread to my liver and lungs. It was treatable, however, because the spread just showed up as spots on the scan. If the treatment went well, I would have years, not months, but unlike women diagnosed with primary breast cancer, I could never be cured.

When I received this diagnosis and heard the words 'no cure', I didn't know how I would get through it. I have breast cancer, I said to myself as I opened my eyes the morning after, knowing that it was going to be like this every morning now, for the rest of my life, walking beside me. I have breast cancer, but I will deal with it. I will deal with it for my daughter's sake. I will see my daughter grow up. It was like a mantra.

In March 2009, on the anniversary of my first diagnosis, they found that the cancer had spread to my brain in the form of a four centimetre lesion in the cerebellum. This too was treatable, but not curable.

Now, in 2012, I'm sharing my 'day in the life' to mark Breast Cancer Care's Secondary Breast Cancer Awareness Day (13th October 2012) to show that it is possible to walk alongside cancer and to give a voice to all the 36,000 people living with a secondary diagnosis.

For two years after my treatment for the brain metastases which cost me my driver's licence, I couldn't get to Joyce, my singing teacher, who lives 10 miles away, but today I drive to her along the back roads so that I can savour the Cornish countryside. I thought I would never sing again after the brain tumour - the surgery to remove the lesions left me incapacitated for 18 months - but Joyce has coaxed the sounds from me gently but surely; singing refreshes my weak system, as well as flooding me with joy. I focus on the music and forget about the rest.

After the lesson, I pick up fish and chips and eat them on a bench outside an old churchyard, now a wildlife reserve. Graveyards have never bothered me, not even the broken and desecrated ones where there is more to fear from the living than from the dead. I should mention that since my first diagnosis, I have steered well clear of junk and processed foods and my diet is mostly fresh and organic - the fish that comes with the very small portion of chips was landed at Newlyn that morning. I buy local: fruit and vegetables, cheese and eggs, free-range chicken for soup, and the occasional joint of beef from the farmers' market which I braise in the oven, although fish - and mushrooms - are my main source of protein. I also have the occasional glass of wine, though I prefer draught Guinness.

I lost a lot of weight after my brain surgery and meningitis - I had severe nausea from the antibiotics and couldn't keep anything down. When I was taken into hospital to be rehydrated and fed on micronutrients, I had cravings for food I couldn't eat and when they took me off the drip, I walked to the kiosk in the corridor outside the ward and bought a prawn sandwich which came right up again. Now that I can eat pretty much everything, I savour the batter on the fish with a small portion of chips after my music lesson. I no longer think, as I did in 2005, when I drank beetroot and carrot juice until the consultant told me to give myself a break, that fish and chips will kill me, but on the whole my diet now is healthier than it ever was before I learnt I had cancer.

I take the main road back so I can stop at Aldi and get my basic shopping for the week. At home, I lie down for a couple of hours as my treatment often leaves me fatigued. I listen to music, sometimes dreaming up a shortlist of tracks to play on Desert Island Discs in the unlikely event I'd be asked to go on it. Then I get up and practice my guitar. I leave the piano practice till Thursday morning before the nurse comes to treat me with Herceptin at home - it warms up my hands and steadies my nerves.

Recently I missed my lesson and my music because my consultant had asked me to make an appointment at the clinic to discuss coming off Herceptin, a drug which has been my lifeline, keeping my cancer at bay for seven years. For me, the decision was a question of security (staying on Herceptin) versus uncertainty (surviving without it). I thought I could cope with uncertainty, but I'm hopeless when it comes to making a decision. Since this decision concerns my survival, I wanted it to be an informed one, so I'd spent the summer gathering my own 'evidence' before the appointment. I took with me a list of pros and cons to show him what losing my lifebelt would mean to me, prepared to defend my case. After an anxious forty minute wait with my daughter, followed by a bizarre consultation with a junior doctor, the conclusion came that I could carry on with Herceptin if I wanted to.

I got the outcome I wanted, but realise that most of my concerns about stopping this treatment relate to the shambolic lack of care and support for women with secondary breast cancer adrift in the community until symptoms loom high on the horizon and the hospital round begins again. It's for this reason that I'll be taking action with Breast Cancer Care this October to demand better standards of care for people with secondary breast cancer. I'm now more passionate than ever that people trying to survive this disease shouldn't be the victims of a lack of understanding and joined-up care.

Indeed, survival is what everyone practices, all of us, every single day of our lives. We hang on in there, breathing the air. We drink the water and chew the cud. We share these basics. Then come the particulars, of which cancer is only one. It is only another exercise in survivorship. That's all it is.

Just because I live with cancer doesn't mean it has taken over my life and crowded out all the other survivorship issues that I, like everyone else, must deal with on a daily basis. It did shout loudest when it first came up; that was only to be expected. Cancer screams urgency, demands complete and focused attention. But not all the time, not every day. Like anything else, like life itself, you get used to it; and it's surprising how many other demands - the call of a sunny morning, a parents' evening at school, a load of scripts to read, a song to prepare, can drown that shrill sharp voice. At first, you think you have no time at all, but that's not necessarily the case. And, besides, we all of us, all of us, face life one day, one hour, one minute at a time. When my oncologist told me I had years, not months, I felt suddenly equal to the challenge. The voice lost some its shrillness. It was just another journey.

To take action to improve standards for people living with secondary breast cancer, visit www.breastcancercare.org.uk/spotlight

Read Anne's full blog, Topic of Cancer

Presented by Breast Cancer Campaign