THE BLOG

What It Means to Live With Incurable Secondary Breast Cancer

01/04/2014 17:06 BST | Updated 01/06/2014 10:59 BST

Hi, my name is Ismena Clout and I'm living with incurable secondary breast cancer. Welcome to my support system, my blog.

Writing about my experiences and journey with cancer provides me with perspective and release and I hope you with an awareness of what it means to live with advanced breast cancer and empathy for the thousands of people who are in the same boat.

My life now is distilled into the fact that to know me, you need to know my cancer. I never wanted to be someone who was defined by their cancer but when you have an incurable diagnosis and ultimately a terminal one you don't have a choice.

The times when cancer isn't in my every thought, movement or action are so very few and far between, I find the only time it isn't everything is when I'm immersed in a film or theatre. Then I can have a moment when I completely forget this is happening to me, the weight of the world lifts from my shoulders and I'm normal again, but then the spell is broken by someone coughing and it all comes crashing back down and I remember.

So what is my cancer journey? My primary cancer diagnosis was when I was 29 in 2004 and I had three operations ending with a mastectomy, six months of chemotherapy and five weeks of radiotherapy. I then had five years of hormone therapy and a year of no treatment at all.

Sadly in December 2010 I had my secondary cancer diagnosis at 36. The cancer had spread to my lungs, liver and bones and was having a right old party. My diagnosis had been long and complex and that time had allowed the cancer to go a bit nuts. My cancer, once it gets going can really build a full scale rave quite quickly. There are arguments that aggressive cancers are actually easier to treat as they respond to treatment quicker but given my cancer is now incurable I can't help but think that when it comes to the time it doesn't respond to treatment and we run out of options then things will come to an end quickly.

After my diagnosis I had five months of chemotherapy and was lucky enough after this to have no sign of disease, which means your soft tissue is showing no active cancer. This lasted for 18 months and in that time I had some spinal surgery and opted to have a second mastectomy.

I had lived for seven years with only one boob, but then with my new situation I knew I would absolutely never have reconstruction. I was fed up of living lopsided, so I chose to even myself up the other way. Now I live with a completely flat chest and I love it! My boobs are the reason I'm slowly dying, so I have to be honest and say I hate them. Living without them is wonderful. In fact I even have a tattoo over one of the scars to reclaim that space as my own and show the world an image I want instead of a scar that shows something is missing.

In December 2012 the cancer started to spread again, it was growing in my liver and in my bones so I started a course of oral chemotherapy. This worked and held the disease steady for nine months but it started to grow again and I switched to IV chemotherapy in September 2013. I'm now on my third type as the first two didn't really do their job.

The cancer has spread extensively in my bones, which hinders the bone marrow from doing its job of making me nice healthy blood, and we are in a fine balancing act now as chemotherapy also hinders the bone marrow. As my blood statistics keep dropping it stops us from administering the drugs, so since September last year I've had nine red blood transfusions to prop me up.

I'm at a very tough stage as the cancer recently spread further in my bones and liver and also took up residency in my lungs again. Add to that the fact that my body is so weak from constant chemotherapy for over a year, the need to control the cancer is more vital than ever. If this current chemotherapy doesn't work, my options become very limited. If it does work then I will finally get a break from the drugs and allow my body to rest and heal for a few months and then we can go back in with stronger treatments and maybe a trial or two to really get it under control.

The balance right now is so delicate but that doesn't mean I'm not still hopeful. My cancer knows how to party? Well, so do I and I am absolutely determined to have the summer off treatment and enjoy myself with friends, holidays and fun.

Watch out cancer I'm coming to get you!

For more information about secondary breast cancer, visit www.breastcancercare.org.uk/secondaries