PUBLISHED ON: 6 May 2015

Note from the editor: Since writing this blog, Lesley has learnt that her breast cancer has returned in her lungs.  With this reminder why there is still so much more we need to do for every woman with secondary breast cancer in the UK - we send Lesley and her family all our good wishes from Breast Cancer Now.

It’s March 27 2014.  Up until then I had been a very busy 48 year old working mother. Life was fairly full on with our four school-age children, but I kept fit, ate well and generally tried to look after myself.  In recent months I had felt extremely tired, but I just put it down to doing too much. Then one day whilst out jogging I noticed I was breathless.  A week or so later I developed a dry cough.

I went to my GP and he sent me for a chest X-ray. This revealed ‘nodules’ on my lungs - and despite being sent for an urgent CT scan I still clung onto the hope that I just had a lung infection. However, the CT scan confirmed the worst - it was breast cancer that had metastasised to my lungs, liver and bones and was now incurable.  The consultant had a rather weary hangdog expression when he told me; the nurse was in tears and held my hand. Welcome to the world of secondary breast cancer.

It seems that the primary tumours in my breast couldn't be seen or felt – I hadn’t ‘missed’ anything, just been extremely unlucky. I used to joke that my cancer had moved faster than Usain Bolt on a good day, but really this was no laughing matter.

Lost without a map 

A biopsy revealed my cancer to be HER-2 positive, an aggressive, fast growing type of breast cancer, which explains how and why it had spread so far.  The shock at being told, out of the blue, that you have incurable cancer is unimaginable.

Maggie Jencks described having cancer as, 'being like taking part in a parachute jump, without a map, behind enemy lines. There you are, the future patient, quietly progressing with other passengers towards a distant destination when, astonishingly, (why me?) a large hole opens in the floor next to you. People in white coats appear, help you into a parachute and – no time to think – out you go.

'If you’re lucky the parachute opens. You descend. You hit the ground. You crawl upright. You are surrounded by a thick fog through which a crowd of dimly discernable figures call and gesture ‘Here! This way!’ But where is the enemy? What is the enemy? What is it up to? Is it here, behind this bush? Over there? Near? Far? And which way is home? No road. No compass. No map. No training.

It describes exactly how I felt – suddenly and without warning we had been thrown head first into the world of cancer. Life became dominated by medical appointments, scans and tests, chemotherapy and its awful side effects – hair loss, exhaustion, mouth ulcers, nausea and more. Like having a permanent hangover but without the fun of the night before. 

In touch with your mortality

Having finally completed 12 cycles of chemotherapy at Christmas, I will now stay on Herceptin for as long as the cancer stays stable.  I will be eternally grateful that the chemotherapy has done its job and the visible signs of cancer have all but gone. But I also know that, like Schwarzenegger in the Terminator, the cancer will be back.  At that point the joys of more chemo, or perhaps a clinical trial or two, await.

The profound grief and sense of loss for my, and my family’s, future that I felt when first diagnosed have abated.  I can now, for a while anyway, try to get back to ‘normal’ life. The poet, Jason Schinder, wrote, "Cancer is a tremendous opportunity to have your face pressed right up against the glass of your mortality" - and the times when cancer isn't in my every thought, movement or action are very few and far between. 

I long for my old, relatively carefree existence - instead, those of us with secondary breast cancer live life in three month gulps of time, lurching from one set of scans to the next and cramming those ‘family memories’ into the times between scans while we are still ‘well’.

We need a solution

A decade ago secondary breast cancer was a death sentence, but now many people survive for years after their diagnosis thanks to the raft of new drugs that are available. 10 years ago it was Herceptin - now it is Kadcyla that offers that hope to thousands of women who are HER-2 positive like me. There are also more and more targeted therapies being developed for the other breast cancer sub types, which will give women with secondary breast cancer more quality time with their families. Unfortunately, NICE and the SMC are forced to reject most of these new, very effective therapies due to their high cost.

When I heard that Kadcyla had been rejected, I was devastated. I was also angry - it felt as if a price had been put on my life, but that my life wasn’t worth the cost. I have worked and paid my taxes, but am being denied this lifeline because a judgement has been made that the median six months Kadcyla gives isn’t ‘value for money’, despite many women surviving for many years on it. 

There must be a way of squaring the circle on this, of negotiating a price that enables the drug companies to still make a decent profit whilst also recognising that our entirely free NHS can’t pay the full price for every new drug that comes out.

I may have incurable cancer, but I’m still a mother, a daughter, a sister, a friend and I can still make a positive contribution to society. My children will have to live a lifetime without me, so a treatment that can give me more time with them to have that last holiday, make some new memories, share some more love, is priceless. 

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