Vita Blog: On being a NED

I’m now officially a blogger on the Breast Cancer Care Vita Blog, which I’m very excited about!! Here is the link to my Vita Blog Post which is also posted below:

http://www.breastcancercare.org.uk/news/blog/being-ned

I’ll post all my Vita Blog Posts here on WordPress and I hope to still carry on with my personal blog. In the meantime, thanks again for following and please feel free to share my blog with anyone you think may benefit from reading it. You can also find me on Twitter @killerkath.

Ignorance is bliss

I first noticed the lump back in May 2012. Like most women I get lumpy breasts, but this one was big. So big, I wondered how I’d missed it.

Pre-diagnosis, my limited knowledge of breast cancer could be summed up as ‘something that affects old ladies and Kylie.’ I was blissfully unaware and firmly believed that other people get cancer: the dust on the self-examination leaflet from my GP was testament to my ignorance. My rapid introduction to breast cancer awareness began in the weeks leading up to my diagnosis, when I found myself buying pink ribbons and hanging out in the local Cancer Research shop, naïvely believing that these charitable acts would somehow shield me from the life-changing diagnosis I was about to receive. The fantasy world I previously occupied quickly crumbled when I discovered that pink ribbons don’t protect you from cancer.

D-day

There’s never a good day to be diagnosed with breast cancer, however my D-day unfortunately coincided with the Queen’s Jubilee celebrations. On 1 June 2012, while the rest of the country were stockpiling booze and burgers, I was told I had Invasive ductal carcinoma (Stage 2B, Grade 3, ER+ and PR+). It was bad enough finding out I had cancer, but I then had to tell all my friends that our Queen party was cancelled because I wasn’t feeling well. Ironically I felt fine, but being told you have a potentially fatal disease doesn’t put you in a party mood.

When I think back to that weekend, it still stirs up really powerful emotions. The terror when the consultant said ‘if it’s cancer;’ the frantic phone-calls trying to get hold of family and friends while I awaited results; the feeling of unreality when they told me it was cancer; and the never-been-repeated-since ‘D-day’ risotto we ate that evening.

What followed was the craziest year of my life. I lost my hair, my breast and probably my fertility. The house I own was damaged in a major fire and my mum was diagnosed with breast cancer. I then had a recurrence in October 2013. Annus-horribilus doesn’t come close to describing the cataclysmic chain of events that occurred during that year. We even had a flood.

It’s been five months since my recurrence, which was successfully treated (I had an axillary lymph node clearance) and I’m now on my way back to that strange place called ‘normality.’

Getting back to ‘normal’

‘I bet you can’t wait to get back to normal’ is one of those things people say to you as you near the end of treatment. To the outsider this seems like a logical step, but when you’ve been a cancer patient your version of normal is warped beyond recognition. I’ve spent the best part of two years being stabbed with sharp objects and getting naked in front of strangers. I don’t miss those bits, however I do miss hospitals and now that I’m officially a NED (that’s ‘No Evidence of Disease’ as opposed to ‘Non-Educated Delinquent’) I love getting the chance to catch up with the nurses and doctors who treated me. It’s like catching up with old friends.

Those of you who have been through treatment will appreciate how meticulously managed the breast-cancer-treatment-pathway is. From diagnosis to the end of treatment, you have a hotline to the Breast Care Nurses, who hold your hand and guide you every step of the way. When I was hospitalised with an infection after my recent operation, the Breast Care Nurse had me trying on bikinis for my Christmas holiday. Having cancer is rubbish, but they make the journey as painless as possible.

I decided to come clean and admit my love of hospitals in my Macmillan support group last week: ‘My name is Katherine, I’m recovering from cancer and I love hospitals.’ After my confession I discovered I’m not the only one pining for people in blue uniforms.

I make light of my addiction to all things medical but it’s quite hard to let go of all that support with the dark cloud of cancer still hanging over you, because with cancer, it never ever leaves. Once you’ve had a cancer diagnosis, you are forever living with the possibility that it may return. It’s really hard for others to comprehend what this feels like, unless they’ve been there. A typical response is ‘you never know when you’re going to get hit by a bus.’ This may be true, but the difference for people like me, living with the threat of a recurrence, is that I’ve already seen the bus and next time, I don’t know if the driver will hit the brakes.

I will survive

There are many myths about survival and amongst these is the expectation that you should be revelling in your tumour-free status. You’ve survived, therefore you should be grateful, in fact you should be celebrating. There’s the added misconception that surviving cancer makes you a better, stronger person and that you will return to everyday life with a renewed passion screaming ‘I Will Survive’ from the mountain-tops. For many, the reality is quite different and it’s only when treatment ends, that you have time to recollect and make sense of what you’ve been through.

I’ve been through recovery once before, so I know it is possible to regain some sense of normality again, and there are many courses out there aimed at people going through or nearing the end of treatment. I can recommend the ‘Where Now?’ course at the Maggie’s centres, which I did last year, and the Breast Cancer Care ‘Moving Forward’ course.

After my recent recurrence, I managed to wangle my way onto a Macmillan ‘HOPE’ course (Helping Overcome Problems Effectively) which covers topics including managing stress, fatigue, body image and living positively with the fear of recurrence. I wrongly assumed that my previous experience might give me immunity against the emotional fallout that happens post-treatment but it’s been just as difficult this time, if not harder. For this reason it’s really important to meet other people who are going through the same emotional turmoil, if anything to confirm that you’re not going mad. This course was brilliant and not only have I made a whole new bunch of cancer-buddies, it’s given me hope.

There’s no doubt that having cancer changes you and if you’re lucky enough to survive, the best you can do is try and take something positive from the experience. Pre-diagnosis I drifted along, never considering that my time here might be finite, always expecting that good fortune would come my way. Being faced with my mortality has forced me to work out what I do and don’t want from life. Health and happiness are top of my list.

My cancer diagnosis has also encouraged me to develop some new survival strategies for life. The most important one is something I learned in the Girl Guides: ‘Be Prepared.’ You can’t plan your life around the possibility that you might get cancer, however my cancer diagnosis reinforced the importance of having a cushion of support (emotional, practical and financial) there when you need it. The second is to ‘Live in the moment:’ you can’t change the past and you can’t predict the future, so make the most of the present. And finally, remember to look out for that bus!

You can read more from Katherine on her own blog killerkath.wordpress.com and also at Twitter @killerkath