I remain a positive person, even though my cancer has spread to my brain

I wish I'd known more about secondary breast cancer 

I had my primary breast cancer some 10 years before the secondary diagnosis. I’m not sure if in those days it was normal to give you lots of information on what might happen. For me, it had always been important to focus on moving on. 

My surgeon and oncologist saw me regularly and one day had to remind me of the survival statistics when I moaned about the side effects of tamoxifen. When I finished treatment, I didn’t want a reminder of what might happen - I wanted to get on with my life.  

But, in retrospect, I feel I should have been given all the information, support and guidance to be more in control of my body. I don’t think it would have changed anything, but maybe I could have avoided subsequent problems if I’d acted faster.  

In reality, I was so wrapped up in work, I didn’t have time to be ill.  

I needed immediate treatment after my diagnosis 

After seeking help from my oncologist for severe pains in my neck and shoulders, I was diagnosed with secondary breast cancer in my bones and lungs. I was devastated. 

I needed an immediate operation to rebuild my neck as I had spinal cord compression. Then I had chemotherapy radiotherapy and now regular treatment of trastuzumab and pertuzumab, plus injections of denosumab.  

Fortunately, these treatments have enabled me to get on with life. 

I was determined to get the treatment I needed  

In 2018, however, I woke up with pains down my left-hand side and went straight to my hospital. I was then told that the cancer had spread to my brain. 

I was shocked when I was told I had brain tumours but relieved that my oncologist suggested the Gamma Knife treatment (a type of specialist radiotherapy). I had so many tumours that treating someone like me was not routine – but the neurologist could see I was otherwise in good health, so was confident to go ahead.   

I have to say the treatment is not pleasant: the neurologist screws a metal frame to your head (with anaesthetic of course) so you can’t move on the bed as they give the treatment. The teams that took care of me were fantastic though. 

The treatment was all fine in the end: I had a good sleep and enjoyed a sandwich afterwards. As I was pushed to the bed for the treatment, I joked with my husband we should pop into the children’s ward and scare them for Halloween.  

Subsequent scans showed the tumours either disappearing or looking like they had been halted in their growth. A few tiny ones remain, so I need another Gamma Knife treatment next year.

I had a scare due to the treatment 

About a year later, I developed water on the brain as a result of the radiation. 

I’d gone to London to see an exhibition and my phone battery ran out. I found myself bumping into things. On the way home, I got completely lost in the neighbourhood. I’d lost the ability to think straight. 

When I got home at 4am, my poor husband had rung the police and hospitals.  

My neurologist saw me straight away and gave me steroids, which made an immediate difference. I also had some experimental treatment which worked well, and gradually things got back to normal. 

I don’t want any fuss 

I’ve been very open about my situation with my husband and our 21-year-old daughter, as well as our family and friends. All of them support me in their own way, but know not to fuss me and understand my need to get on with things. 

My husband drives me around now, as I am not allowed. He does a lot for me, and we generally do more together, which feels good.   

We visited the local hospice, which I found such a happy place, and that helped me realise they were focused on quality of life. Since Covid, they have organised weekly discussions and relaxation classes via Zoom.  

I’ve been finding more and more things to enjoy in life 

I have always believed it’s important to have a reason to get up in the morning.  

Before Covid, I had reflexology during my 3-weekly treatment, which I find very relaxing. I also attended the Breast Cancer Now Sutton meet ups for Living with Secondary Breast Cancer, which gave me hope, laughter, and the time to be ‘real’. 

I was constantly out and saw all the art exhibitions in London and many theatre productions. I enjoyed seeing friends and explored new places. I went on an amazing holiday with my husband and daughter. One of my relations called me the family ambassador, as we are always seeing uncles and aunts and cousins around the UK!  

We still do as much as we can within the rules. Distraction is a wonderful thing! 

Sometimes I have to remember I am ill - not just retired and having a good time. I’ve had to learn to do things more slowly and sleep when needed.   

I still have a good quality of life 

With Covid, we have tried to balance risk and be sensible and ensure a good quality of life. Zoom calls are great to keep in regular contact with people that matter, and we’ve had some fun ones with the extended family and friends.  

I have great wrap-around care (medical experts, nurses, family and friends) - Team Natalie, in fact!   

I am in regular contact with my GP and the hospice, and I have the medications I need to live my life as pain-free as possible. My GP kindly reassured me the hospice would give me the medication I need to keep me comfortable at the end, which is important to know - though I plan for this to be years away, to enjoy my life and stay positive.