You look so well!

Guest blogger | 09 October 2015

Heather

Heather Connor was diagnosed with secondary breast cancer in 2013. She has been working with us to promote our Bucket List campaign. Heather talks about the difficulties of living with secondary breast cancer and what she hopes the Bucket List campaign will achieve.

'You look so well! Have you finished your treatment?’ This is the question I get asked most times I catch up with friends. Someone will always ask this, and others along the same lines. The reality is that since being diagnosed with secondary breast cancer in November 2013 my treatment will never stop. I’m on a treadmill and there’s only one outcome which I know is certain – I will die from this awful disease.

In 2010 I was having a shower and noticed a lump in my breast. I think I instantly knew that this was trouble and of course that was confirmed soon after. What followed was chemotherapy, surgery and radiotherapy and then Herceptin, every three weeks, for a further year.

Music and me

Music has always been a strong presence in my life. I was a budding musician when I was younger and in order to comfort myself I played lots of music from my youth to keep me going through the difficult times of treatment. That’s why I’m supporting Breast Cancer Care's Bucket List campaign this year. I’d love to conduct an orchestra in a big brass-themed piece of music at a top venue. Music lifts me and often gives me goosebumps. It has the ability to transport me to a perfect world, free from the debilitating side effects of cancer treatment and of course evokes wonderful memories of childhood and special times throughout my life.

Bizarrely, finishing treatment and being declared free of cancer wasn’t the huge celebration I thought it would be. I felt insecure about leaving the weekly visits to the hospital behind and there was a huge wide world out there which I needed to get back into. With the help of counselling and the support of my close friends and family, I did indeed step back into teaching and began again. It was ok – everything was going to be ok.

Secondary breast cancer

In August 2013 while on holiday with my family I felt a sharp pain in my sternum. I spent most of the day in bed – I thought I’d pulled something, and told myself not to worry. I even visited the doctors on my return and they confirmed that it was probably just a pulled muscle. However, my oncologist sent me for further tests and at my next appointment in November 2013 I received the news that my breast cancer had spread to my bones and my lungs. It can’t be cured, only managed. It was just devastating. Overnight I shrank back into my protective shell, embraced the hospital as my friend and began a further course of chemo alongside Herceptin and Perjeta. After seven rounds of chemotherapy I am now just on Herceptin and Perjeta, every three weeks, for as long as it continues to work. So far, so good.

I took six months off work and have now returned part time. It’s not easy, but for me it’s necessary. I also started doing some very small things for Breast Cancer Care when I was able. I wanted to give something back.

However, my passion is the collection of data about women and men who have secondary breast cancer. No figures are actually collected about this so we really have no idea how many people are affected.

This means that the Cancer Drugs Fund makes judgements about life extending drugs without accurate data about the people affected. Statistics can be manipulated however you wish, but if you do not have an accurate figure to start with how can you possibly decide to not give someone a life-extending drug as it is not cost effective?

I work in a school, I am judged on data, my pay is based on data outcomes and my responsibility as a leader is driven by data. How can we allow life-changing decisions regarding the Cancer Drugs Fund to be made presently, without any accurate figures of how many people are living with secondary breast cancer? My mind boggles, and as I continue to be ruled by data, I have to watch friends lose their lives because a system, based on no data at all, continues to judge whether they can enjoy further time with their family and friends or be sent home to make final memories before their death.

Campaigning for a fairer system

Everything is geared towards early screening and early diagnosis, but the reality is that there are thousands of men and women like me living with secondary breast cancer and we’re not prepared to keep quiet anymore. We deserve a system that is fair and transparent. After all, early diagnosis and treatment doesn’t automatically mean that you won’t develop secondary breast cancer. People have so much to learn.

I’m no longer offended when people ask me if I’ve finished my treatment. I don’t want to upset my friends so I move the conversation on. However, I’m annoyed at the general ignorance of the public about secondary breast cancer and for me data is the way to start. You can’t hide from solid facts, but you can make rational, sensible and transparent decisions using them.

Before you leave this page, email your Health Minister to urge them to improve care and support for people living with secondary breast cancer and to ensure data is collected. Then, perhaps in the near future, we might find out the real truth about what we are dealing with.

Join the campaign