In my last article I introduced myself and explained a little about what makes me tick. I spoke about my family, my influences and some of the things I love.
This time, I hope to give some insight into living with stage four breast cancer. I hope to explain a little more about the disease and share some of the many things that I have learned. This is a reflection on my own experiences, and it’s worth recognising that every individual diagnosis will be slightly different and there are no two identical cancer journeys. That’s probably the very first thing I learnt.
Let’s start at the beginning. In late 2016 I found a small lump in my right breast. I wasn’t too concerned. However, I knew that ignoring it was not a wise option, so I took it to my GP in early 2017. It was declared “probably nothing serious” but I was given an appointment at the nearest breast clinic the following week, just to be sure. I set off for the clinic that morning, not particularly worried and more concerned about what I was missing at work. In the following 3 hours I had a mammogram, an ultrasound, biopsies were sent and I was taken back to the consultant. Things started to take a turn when a Macmillan nurse appeared by my side. I was told the lump was highly suspicious, but that a firm diagnosis would be given in a week’s time when the results of the biopsy would be in. I went back to the clinic the following week to be told I had breast cancer. I was 43. Like many thousands of women before me, I couldn’t quite believe what I was hearing. I spent the rest of the day calling the people I love with this news. Despite everything that has happened since, that afternoon is up there with the very, very worst.
There were follow up tests to be done which included an MRI an ultrasound and lymph nodes were tested. The final diagnosis was a hormone positive, HER2 negative stage 2 infiltrating ductal carcinoma.
I was quickly sent to see a surgeon where we discussed the options of mastectomy and wide local excision (lumpectomy). As the tumour appeared well contained and treatable, I chose the lumpectomy. I found a determination I didn’t know I had to remain positive. I knew that this kind of primary breast cancer was treatable. I had total conviction that I would get treated, recover and get back to normal.
Surgery came and went and I recovered well, I remember thinking the worst was over. I was sent to meet the man that became, and still is, my oncologist. I remember in our first meeting he told me I shouldn’t be there because I didn’t hit the breast cancer risk factors. It’s worth remembering this, if, like me you read the lists of “causes” of cancer and think you are in the clear.
Once I had fully recovered from surgery, I started radiotherapy. 20 days of being in the same place at the same time. It’s not painful, it’s very quick, you get looked after wonderfully, and yet I really hated it. After that I started what was meant to be 5 years of hormonal treatment which was simply taking a tablet a day to lower the oestrogen in my body which had fed the tumour. Next came the chemically induced menopause, which I cannot recommend in any way. I carried on happy in the knowledge that despite the menopausal symptoms, I was actively reducing my risk of recurrence.
I went back to work and got on with life. Or at least I tried to. I was aware that I had some aches and pains and could not shift the nagging fatigue. All of those symptoms I put down to the hormone drugs and being in a recovery period.
At the first anniversary of the diagnosis I was invited back for a check-up. After a mammogram and ultrasound, I was declared cured! No trace of disease in the breasts. Fantastic. Except I didn’t feel fantastic and pointed this out as forcibly as I could. They agreed to do some simple blood tests. Sure enough, there were signs that there were potential issues with liver and bones.
After a week of scans, ultrasounds and more tests. The outcome was that I had extensive and multiple secondaries in my bones and liver. To my shame, I didn’t really know what secondary cancer was. I quickly learnt that breast cancer has favourite places to travel and these are bones, liver, skin, lungs and brain. I learnt that secondary cancer is also known as metastatic cancer, stage 4 cancer and also, terminal cancer, because, and again news to me, it’s incurable. I was 44.
That was two years ago and I have spent those two years on targeted therapy, hormonal treatments, 2 different oral chemotherapies and now IV chemotherapy. All the treatments were initially effective but then stopped working. At the moment, IV chemo is keeping things largely stable. I have MRIs every three months to monitor the progress of the disease and I assume everything is OK, until my oncologist tells me otherwise.
Most of these last two years I have felt well. I have looked well and if you passed me in the street you would not imagine I have an incurable disease. There are side effects and symptoms to all the treatments, but overall, I managed to keep a really good quality of life. This is what is so important to me. I can keep a positive frame of mind, stay active and continue to do the things I want to do with the people I love whilst the treatment allows me to do so.
In the last 2 years I have had too many blood tests to count, daily tablets, three weekly bone strengthening injections, 3 liver biopsies, multiple CT scans, treatment for shingles, at least 10 full body/one hour MRIs, one hospital admission, one trip to A&E, 25 more doses of radiotherapy to the bones, one blood transfusion, 5 chest x-rays, frequent prescriptions of anti-biotics, six months of regular hormonal implants in the tummy, a port fitted by my left clavicle. There is more, but I will stop there. It’s a very long list because it takes a lot to keep me alive. The treatments have had a devastating effect on my immunity and I don’t seem to be very good at fighting off germs and infections.
I started the IV chemotherapy around four months ago. Everything else had failed and the prognosis was looking grim so I really had no choice but to take the final offering. I haven’t tolerated it particularly well, I don’t feel great, the fatigue is real, I lost my hair so I now finally, look like somebody you might recognise as a cancer patient. I tried really hard to put that off for so long. However, the chemo is doing its job, for now. I live in the knowledge that this will not be the case forever.
I am often asked how I stay so positive and continue to go about my days without falling in to a pit of despair. The answer is this; I am still here, and one day I won’t be. I have chosen to live in the now and be grateful for everything I have and everything I can still do. There are days when this is harder than it sounds, but by and large, I try to focus on the things that make me smile. I don’t look any further forward than the next scan and I think about what things I can do in any week that will make me happy. And I try really hard not to worry about anything else.
I have learned so much about what is important, and therefore what isn’t. I know now how important it is to take care of yourself; be body vigilant and not ignore symptoms that should be checked. I have experienced the most incredible care and support from my oncology team and nurses. I have discovered that my local hospice offers a really extensive list of therapies, treatments, wellness programs and along with a fantastic team of people help keep me as well as I can be, physically and mentally. I have witnessed such compassion and love from people close by, friends and family, old friends far and wide who have all gone out of their way to lift me up and let me know they are by my side.
You see? I have so much to be grateful for.
‘Til next time. Big Love, AG
You can find out more via my blog: Abigail’s blah blah blog