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“I just feel very lucky”

Clare is in her fabulous fifties, she is married to her second husband Rob and together they have 3 teenage sons. Tragically, Clare’s first husband Andy died suddenly and unexpectedly at a very young age just 8 weeks after they got married, before they had even got the wedding photos back from the photographer. She describes her life as being “straightforward” until then. In the years following Andy’s death, Clare suffered from PTSD but she managed to go back to teaching, met Rob and had her boys. Then, at the start of 2013, just before her 50th birthday, with 3 young children, she found what she describes as a “horrendous” lump in her breast. She had been due for a mammogram later that year but went straight to her GP and was fast tracked through to see the consultant. She says she just knew it was cancer. Following a biopsy, mammogram, ultrasound and CT scan they confirmed primary breast cancer. She had a full mastectomy and they removed a 16cm tumour. However they had also found cancer in her lymph nodes and the CT scan showed evidence of secondary disease, so almost immediately after her primary diagnosis she was actually diagnosed with secondary breast cancer. Clare had radiotherapy and a hormone based treatment which kept her stable until 2016. She had a huge shock when, later that year, she discovered she had a tumour pressing on her spine and was hours from paralysis. She was treated with steroids and radiotherapy, and later had 6 rounds of chemo which she responded well to. She has been on targeted hormone treatment ever since with – thankfully – minimal side effects. Clare didn’t know anyone else ‘like her’ when she was diagnosed four and a half years ago, and she now supports others by talking to newly diagnosed secondary breast cancer patients at her local hospital.

How did you feel when you got your secondary diagnosis?

It was completely overwhelming to get a secondary breast cancer diagnosis just as I was recovering from the mastectomy. I was anxious and scared and didn’t actually want to come home from the hospital as somehow I felt safer there. At first I didn’t tell anyone except my husband about my secondary diagnosis and so everyone just assumed I was ‘cured’. The whole situation was made even more difficult because my wonderful 77 year old mum was diagnosed with primary breast cancer at around the same time, and she had a mastectomy just 3 weeks after mine. It was such an emotional time.

How are you doing now?

I’m stable at the moment. I have bloods taken every month (because one of my medicines is from the drugs fund) and I have scans every 3 months. I have an agreement with the doctor now that I don’t see the results of the blood markers, as it used to cause me unnecessary stress and worry. I also worry about every ache and pain. I hate that side of things – the emotional impact. But I am well, and I feel very lucky to be alive.

What has been your biggest challenge on this journey and how have you tackled it?

In a strange way, Andy’s death helped to prepare me for the fact that life can be incredibly difficult. I had already seen how life can change in an instant. Being told that I had an incurable illness, that I was going to die, when my children were so young, was nevertheless horrendous. But in our house we have tried to carry on as normal, and that has really helped. My family don’t treat me differently or feel sorry for me. Although I think about it every day, I try not to dwell on it and I try to enjoy my life. There’s no evidence of the boys being affected by all this, and I know they will survive without me when the time comes. In a way, it’s helped me to know that they will see when I get sick, they will be prepared. I won’t ‘disappear’ overnight like Andy did.

How has your secondary breast cancer diagnosis changed your outlook?

I just feel very lucky to be alive when I know so many people who haven’t been as lucky as me. We’re all going to die in the end – it’s just that I know what’s going to get me. So I enjoy my life. I have lost lots of weight, I go cycling, I see friends. I think it’s given me a sense of perspective.

What has helped you and what advice would you give someone who has just been diagnosed with secondary breast cancer?

I am part of an online forum for secondary breast cancer patients. Rosie was part of that group too. It really helps to vent, and talk about your challenges and issues with people who understand what you’re going through. I also go to a day hospice, where everyone is well. Occasionally I keep a diary. My advice to someone who has been diagnosed with secondary breast cancer is to be honest and talk to people. Join some groups, both online and face to face, and you will meet women who have had their diagnosis for 10 years or more. Ignore the doctors who can make you feel like you’re going to die there and then. Of course it’s a chronic, long term and currently incurable disease and you will go through a grieving process – but try to look at the positives. And get knowledgeable about your disease and your treatment. Become an expert.