One morning I received a phone call which invited me to a trial. Initially, I thought this would be a trial of some new wonder drug which would keep the cancer at bay and would reduce the side effects of Exemestane. As I’ve written before Exemestane, like Letrozole is an aromatase inhibitor which reduces the levels of estrogen and has side effects which include hot flushes, feeling fatiqued and having joints of a 99 year old first thing in the morning. However, I had that wrong – it was not a drugs trial but a workshop trial.
The workshop was held locally and was hosted by a lady from Macmillan cancer support and a lady from Southampton University. The oncology breast care nurse and specialist support nurse were also present and a research doctor who was there to oversee the entire process. There were eight guinea pigs who were going to trial the workshop. All of us had had breast cancer, some double mastectomies, some lumpectomies, some single, some had had radiotherapy and some chemotherapy. Some had been diagnosed some years before and for others it was a much more recent experience. We had all passed through the Primrose clinic and there was a sense of camaraderie in taking part.
We introduced ourselves, our history and something we liked to do and then it was on with the presentations. These were adapted from a previous workshop for men moving on from prostate cancer – it was a way of getting on with life once you’d been set free from clinics. There was discussion about a new portal to gain information e.g. blood, scan, x-ray results, advice about diet, exercise and managing symptoms – it was all fairly upbeat, informative and useful.
The final session however was far more salutary as the focus was on being vigilant and what to look out for. Including the importance of examining your breast(s) even if you’ve had a mastectomy as cancer can return in the margins, should you turn a shade of yellow hurry and get your liver checked out, should you be breathless without a cold get your lungs checked out, if your long bones ache (even when resting) get these checked and if one’s eyes start going googley with a headache that lasts for three weeks then get it checked out as you may have mets in the brain. The research doctor who’d been monitoring the workshop asked for our feedback – we all agreed the premise was great but the execution needed a bit of work.
Secondary breast cancer is real, it affects many women.
One such woman Jacqui B lived a full and exciting life for several years after a secondary breast cancer diagnosis. Jacqui had been skiing and hurt her leg – on investigation the cancer had manifested itself in her bones. Jacqui took every opportunity from oncology, lived life to the full and was a great support to others including me. A few months before Christmas she cycled in India to raise money for Women v Breast Cancer and wore mad outfits which she made.
In early January I heard that Jacqui had died and was very distressed – this was a woman who was full of life and was vital in the real sense of the word. She was always positive and always glass half full.
After the moving on from cancer workshop I went to Jacqui’s wake in a lovely restaurant overlooking the sea – Jolly Jack’s. The place was full of men and women talking about Jacqui and organising ways to keep her memory alive – one way is to take part in a Jurassic Coast Mighty Hike. To contribute to this Mighty Hike click on this link and find out more.
It was a sad and uplifting end to my day… made more extraordinary by the fact that that as I left it had started to snow.