I may have secondary breast cancer, but hope keeps me going

No one really thought it could be cancer 

I was 38 when I first faced breast cancer. I found a lump, went to my GP and was referred for a scan - but no one really thought it could be cancer. Unfortunately, it was.  

The cancer was HER2 positive and aggressive. It wasn’t particularly big, but somehow it had found its way into a nearby lymph node.  

My world turned upside down that day and I still feel a part of me remains there in that quiet, stark consulting room back in 2014. I had a young family: my husband and two daughters (aged 9 and 5 at the time).  

I was given everything they could throw at me: chemotherapy, surgery, radiotherapy and a year of trastuzumab (Herceptin). I felt the sense of urgency and panic as everyone rallied to ‘save me’, and it terrified me – it was the first time I had ever really stared into the face of my own mortality. 

I was told that the cancer was no longer curable 

I thought I had made it through, but in 2019, at the age of 43, I began to suffer some hip discomfort. A vague pain that came and went and eventually started to keep me awake at night.  

I received physio for a number of months and, although I didn’t go directly back to the Oncology Department straight away (I didn't really believe the cancer would come back and I couldn't face the thought of having to return), I did visit various doctors and other healthcare professionals, all of whom decided it was nothing sinister. I was told it was probably sciatica or a hip impingement.  

Sadly, in May 2019, we had to call an ambulance as I suddenly became unable to move, walk or stand - the ambulance never came that day and luckily the pain subsided slightly. However, a week later, I received a scan which gave me the worst news. I had secondary breast cancer in the bone in my pelvis, hips and spine. I was told the cancer was no longer curable. 

My wonderful family and friends helped me through 

I underwent a total hip replacement that summer, followed by a further 6 rounds of chemo. It was a time of deep depression and the thought that my cancer had come back, alongside the physical fall out of what I was enduring, totally floored me.  

With the help of wonderful family and friends, I slowly started to improve, both mentally and physically. And I started to find a ‘safe place’ within my own home where I felt in control and untouchable from life at the hospital. 

I was hugely grateful for everything all the doctors and specialists were doing for me, but I felt they were taking my control away from me and I didn’t want them to be pulling all the strings to my life. 

I have to be my own advocate now  

I have received wonderful care from all the doctors I have been treated by, but I lack the ‘comfort blanket’ feeling that I had during my primary diagnosis when I was under the care of the breast care unit - when everyone was telling me it could be cured and there was every hope.  

Somehow I often feel bereft, like I don’t belong to that club anymore as I no longer qualify – that somehow I have gone beyond what they are able to offer me. I feel now I am my own advocate and sometimes need to do the liaising myself between different departments. 

I finally have the tools to see life in all its glory 

Today I receive 3-weekly IV drugs, a 6-weekly bone injection and take a number of tablets everyday - all with the aim of keeping the remaining tumours in check within my spine and other areas. These tumours can’t be removed, but they can be controlled and, since my hip operation, have so far remained stable.  

I think the thing that keeps me positive through all of this is hope. A hope that if I can just keep on being as healthy as I can and take things day to day, one day there could be new drugs and new breakthroughs.  

For me there is no ‘end of the line’ - we keep going. Never stopping. I feel that I can see life now in sharper focus - almost like looking through a lens, zooming in on the things that are important to me. Of course, the usual daily niggles still get to me but, I feel I am better equipped to tune my mind out without feeling guilty.  

Coronavirus has messed up my plans for getting on with my life and doing wonderful things with my family.  Cancer already threatens to cut it short and I feel angry that COVID-19 has complicated things further.  So, for now I continue to make plans (that's part of the fun, isn't it?) and I look forward to a time that we can visit the places we want to go. In the meantime, I enjoy the extra time I am getting to spend at home with my family.  

I know that life can be short, and - even though I’ve been dealt a terrible blow - I finally have the tools to see life in all its glory. My amazing girls and my husband keep me positive and have helped me focus on the here and now. They remind me that life continues, no matter what.