The following 5 weeks were the toughest. There were grim diagnostic tests - nuclear medicine bone scans, CT scans, MRI's. Tuesdays meant results. Usually there was a long wait as the doctors ran over their appointment times. Waiting to see if the cancer had spread to my bones (it hadn't) or to distant organs (it hadn't).
I was a 'good' patient for a few weeks, and then I started asking questions. The answers didn't add up to me. By what percentage did chemotherapy improve my prognosis? Between 5 and 7 percent of surviving five years. I had just turned 40. Making it to 45 didn't feel much like 'survival'. What of the possible secondary cancers that chemo can cause? Was it true that radiotherapy had the potential to cause lung damage and cancer? Yes. Or that neither of these modalities could kill cancer stem cells? (these 'mother' cells are the micro-metastases which the oncologist was talking about 'mopping up'). Yes. What percentage chance was there that Tamoxifen would work for me? 12%. And what of the fact that almost 50% of women give it up within a year of starting because the side effects are so horrible? I'd been seriously ill prior to diagnosis, and was shockingly underweight - I didn't believe that I would survive chemotherapy. The statistics became meaningless. I am not a statistic. I am a unique individual who developed cancer by a unique route. I decided to find my own way back to health.
Writing a diary helped me to understand my fears. It made me realise how resiliant I was, and how hungry for knowledge. I tackled my feelings about death. It was a good place to collate answers to my many questions.
The impact that my cancer diagnosis was having on the people who love me was overwhelming, but it was strangely calm in the eye of the storm. In my little family, we were busy Doing. It seemed that more tears had been shed for me than I had cried for myself. Self-pity wasn't for me, and I refused to 'own' my tumours or let them define me.
I started to read. A lot. I found people who had beaten cancer naturally. I felt sad and amazed that there were basic concepts about nutrition that I hadn't understood. As I became empowered, my fear disappeared.
I decided to have the mastectomy to remove the tumour burden. I couldn't conceive that my breast would be cut off. I would stare at myself in the mirror - what would this 'new' me look like. Strangely, the night before the operation, I realised that I would recognise my flat-chested self from when I was a girl, and found that thought comforting.
The fear and anxiety leading up to the mastectomy were uncontrollable. I was wheeled into surgery in tears, holding myself - I literally wanted to hold onto my breast. It was surreal to wake up in the recovery room knowing that it had gone. There was no bandage, just a sticky plaster, and some drains, which I needed to carry around in a bag. The smell of the wound was disgusting to me - like an animalistic signal that something was wrong. When I finally looked in the mirror I felt faint, more from seeing the drains which were visible under my skin, above my ribs.
Two weeks later I was back at the hospital. Another Tuesday, more results. One lymph node showed positive for disease. This indicated that cancer had potentially spread through my body via the lymphatic system. (What I later learned was that by the time a tumour is 2mm it needs its own blood supply, and from that point it's possible for cells to shed from the primary tumour into the blood system. These circulating tumour cells and circulating cancer stem cells are what gives cancer the potential to spread to distant organs).
The next part was the most difficult in terms of decision making. I felt very resistant to having another operation, this time to remove my axillary lymph nodes. I sought a second opinion which confirmed what I knew about chemotherapy and radiotherapy, but I was stuck. I finally decided to have surgery, to remove any further cancer burden. But somewhere in between the 1st and 2nd operations something had changed. I had begun to take responsibility for my health. I'd already started to make dietary and lifestyle changes, and had decided that I would not be having chemotherapy, radiotherapy or tamoxifen. I knew that boosting, not destroying my immune system was the way forward.