Secondary breast cancer: ‘I live with a black hole for the future so the present is all I can enjoy’

The hardest thing about this journey for me is having to accept that life has changed. In my head I’m still the strong Issy that nothing affects, when in reality it’s more like I’m held up with cheap scaffolding, anything can knock one of those supports out, from bones flaring up to new pains or needing wheelchairs when I’m embarking on big days out.

I was first diagnosed with breast cancer in June 2004 when I was 29. It was stage three, grade three and I had three operations: Lymph node removal, a lumpectomy and a mastectomy. This was followed by radiotherapy and chemotherapy. After all this treatment I thought my ordeal was over. The diagnosis made me more determined to achieve the goals I’ve set to enjoy my life. I vowed not to get to the end with a life of regrets. I have yet to fall in love though, I’ve been so nervous about bringing someone else into this ‘breast cancer world’.

At 36, I was diagnosed again, this time with secondary breast cancer. The cancer had spread to my bones, liver and lungs – three organs, my journey appears to be all about three maybe that’s my magic number? I’d had eight rounds of chemotherapy and the final big-guns one, amazingly it got me into remission with no sign of disease in my lungs and liver with my bones finally stable. I chose to have a second mastectomy to even me up and take the weight off of my damaged back. I have had some back surgery too and continue to have a bone drug alongside some hormone therapy.

Secondary breast cancer is a condition that is largely misunderstood. It can be treated but it can’t be cured. While this wouldn’t be possible for everyone, with the right support and treatment, a significant number of women are living full lives while living with secondary breast cancer. That’s how I consider my condition: I am living with secondary breast cancer, coping with all the tiredness and all the pain. At the same time I am trying to do my full time job as an account manager, my volunteer role as chairman of the British Institute of Facilities Management and all the other things that I want to do!

However, there are thousands living with this disease who continue to feel isolated as there are large gaps in care. This is why I am raising awareness about Breast Cancer Care’s Secondary Breast Cancer Awareness Day. It’s the third of its kind and taking place on October 13th. To mark the day this year, Breast Cancer Care’s a ‘day in the life’ campaign will continue to challenge the misconceptions around secondary breast cancer. For each day of the week, a different lady with secondary breast cancer will talk through their average day. I’m Tuesday!

Sadly, due to all the chemotherapy I’ve had and because I’ve had my ovaries removed I will never have children of my own. I’m still single and pretty unhappy about that. Also, after two mastectomies I struggle with how my body looks, I’ve lost everything that ‘makes’ me a woman. However, I still love this body for fighting and winning so far. My scars tell a far greater story than two boobs would.

They say:

- look what I’ve lost
- look what I’ve suffered
- look how bad things are
- look how brave I am
- look what a strong person I am
- look what good surgeons I’ve had
- look how sad things are
- look how despite it all I’m still here
- look how unstoppable I am

Two boobs will never say all that! Secondary breast cancer taints everything you do and every decision you make. I live with a black hole for the future so the present is all I can enjoy. But my plan is to always get through this with a big smile and have fun! I have very dark moments but there is always hope. A positive outlook means that I see it, take it in and smile because no matter how rubbish everything else gets, I’m not going to let it consume me. Of course there are bad days and weeks and it’s vital that I feel that, acknowledge it and go with it. Negativity isn’t something to be scared of and fought because it is the balance. I do though vow that to my last breath I’m going to fight and be positive, not because it will cure me but because it will make sure that really in the end I won.

To find out more about campaigning for change for people with secondary breast cancer visit www.breastcancercare.org.uk/secondaries

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• ByronGetonefree

  A very touching and inspiring piece Issy. You are one brave woman and I wish you all the very best in the future.

• Alex Worth

  You are an inspiration to everyone out there. Keep up that attitude, you are a very brave young lady.

• Retro

  I lost my maternal aunt to breast cancer two weeks ago. She was 62 and for d last 8 years suffered but never complained. My husbands aunt died at 36 of breast cancer after a 4 year old battle which also saw her giving birth to triplets after chemo. I salute the courage of you women, who live their lives to the fullest despite all odds. You are the real role models for those whom Allah have blessed but they don’t care about the pecious gifts, life, hope and courage.

• http://www.facebook.com/melanie.j.cartwright Melanie Jane Cartwright

  Thank you so much for this blog – I have a dear friend with secondary breast cancer – I am going to forward this to her – thanks