How are you?

Two years on from a breast cancer diagnosis at the age of 41 I am finding it difficult to answer the question "how are you?" Treatment is finished and I am classified cancer-free so I should answer "I'm fine". The real answer is much more complicated though.

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I‘m at that stage where everyone – including me – thinks the worst is over with. In many ways it is, because there are not many things worse than going once a week to get injected with a poison intended to kill every cell in the body. It is extremely unlikely that I’ll ever recall the 16 rounds of chemotherapy with fondness, but I must admit there is something to be said for having a specific challenge on which to focus. From what I witnessed in the chemo room and hospitals, all humans facing cancer treatment manage to rise to the challenge one way or another, even if they are kicking, screaming (and puking) their way through it. I will never understand how it is possible for the human body to feel so bad and yet not be temporarily hospitalised.  Despite all this, in retrospect it was actually almost six months after finishing the treatment that I really hit rock bottom.

Now however, with over a year since the last chemo infusion, I feel I am doing much better and my depressive periods are becoming few and far between. I lost the 12 kilos gained during treatment and I have a little more energy.  My hair, that was always the least of my worries yet the focus of most people, is finally growing back, albeit grey and crazy. I even managed to get a new job which will help to distract me from my still increasing list of new ailments. New ailments are the worst part of the "new normal" because they all need to be investigated - requiring organising even more doctors appointments and coping with the understandable associated worry.  

For example, a few weeks ago I noticed my hip was playing up.  There was a weird feeling in the joint and the normal range of movement was restricted and uncomfortable.  Having experienced a few false alarms since the start of my cancer journey (tonsil-gate, liver-bother) I told myself to take some deep breaths and not to panic this time. Everything would be discussed in the upcoming quarterly cancer check and I managed to keep it together just fine for the next few weeks. That is, up until just 24 hours before the appointment. Suddenly and for no apparent reason the tried-and-tested "bash the panic away" method stopped working.  The intensity of worry increased to a point where I lost all my defenses becoming a watery mess, dribbling tears into my attempted breakfast. 24 hours began to feel like months.  Radio stations played songs making me nostalgic for my too-short life. Someone posted a beautiful rendition of "Time to say Goodbye" on social media and I began to wonder: "nice for my funeral? NO, far too cheesy even for you, Queen of Cheese!" All attempts to reason with an imagination spiraling rapidly out-of-control were futile and I suddenly saw in my minds eye, my still-young-but-dead body being consumed by flames.  Another tsunami of tears arrived and I found myself crying like a baby for my mum. Then crying even more because I knew I couldn’t even tell her any of this, because she is the one person fearing my death more than me.

If this is the state I get myself into and I am a generally positive person, then spare a thought for people predisposed to the "cup-half-empty" mentality.

I got through those 24 hours and at the quarterly-cancer-check the next day my doctor informed me my hip problem is not connected to the cancer, but to get an orthopedist to take a look. All that angst for nothing! I tell myself Not for the first time: "never again will I get worked up like that".  At the orthopedist appointment just a few days later (thank you German health system!) I even managed to make jokes about my paranoia (haha, if only he’d seen me a few days before!) . Like my oncologist he reassured me, but suggested an MRI just to establish the source of my discomfort. I mentally skip out of the room (dodgy hip doesn’t allow physical skipping) stopping only to pick up the referral letter from reception. And then. My world implodes. Again. I read the words "suspect bone metastasis".  The next few days waiting for the MRI were a horrible blur.  This coincided with starting my new job - I have no idea what my new colleagues thought of me. And then, thankfully after all that I collapsed in tears of relief after receiving the glorious news the MRI showed absolutely no sign of bone cancer! Probably just yet another horrible side-effect of either chemo or the daily anti-hormone tablets I have to take for the next 9 years.

With all this in mind, when my lovely friends ask "How are you? All treatment finished? You are fine now?"  I really don’t know how to answer. I am, of course, mostly fine. But every so often I have and will continue to get struck down with this worry of the cancer appearing somewhere else. This is a big worry because once that happens it is more or less game over: TERMINAL. Statistically 30% of early stage breast cancer survivors will discover their cancer has spread and this can happen even 20 years after the initial diagnosis. Every week I hear of someone else whose breast-cancer has gone terminal, often to the bones. There is some good news because women can now live for ten years or more, thanks to daily life-extending chemo and other medication but the average life expectancy is three years. Many women with this diagnosis are campaigning for more research and support for people with metastatic breast cancer. I hope that I will never have to worry about this because  if there is one thing more scary than dying early, it is the probable pain and discomfort of a tumour spreading like an alien invader destroying bodily functions one by one.   

Occasionally I hear the oh so helpful comment "but none of us know whether we’ll be hit by a train". That’s true, of course. But waiting for results feels like being tied to a train-line wondering whether the approaching train will keep heading towards you or switch tracks just in time.  Greenhalgh & O'Riordan in their Complete Guide to Breast Cancer state "However long you live for, you will never return to being a non-cancer patient. For the rest of your life you will be in one of two phases: 1) Receiving active treatment.... 2) Living after active treatment....."     

I accept that the new normal will take longer than I thought to get used to - in all reality it is a life-long project.



Katie Griggs

Manager, Home for Refugees in Berlin

Working life began aged 14 in a local pub kitchen on Saturdays followed by a position as waitress at Pizza Hut one year later. Part-time work (WHSmiths, Somerfield, HSBC) continued throughout A'levels and University before landing a full-time position at Richard Branson's newly launched Virgin Finance company in Norwich. A few years later London was calling: a job in marketing at Sky TV awaited. After another few years there, it was time to move away from corporate life so the Amex-card, the car, the phone and laptop were exchanged for a bicycle and second-hand computer. Ten years of self-employed work followed - in London and Berlin with a portfolio of clients in organisations with a social, cultural and environmental focus including Greenpeace, an electric car company and Potsdam Institute for Climate Impact Research. Then in 2015, 100,000 refugees arrived in Berlin requiring all-hands-on-deck. That included working in several huge emergency camps, hosting refugees at home and setting up Cycling Lessons for Ladies: providing cycling tuition for women refugees in the milder months and in the Winter preparing food together for homeless people at an emergency shelter. So far over 14,000 meals have been prepared as a team. In 2017, a diagnosis of breast cancer at the age of 41 meant there was even more to learn about life (and also time to launch a fundraising initiative "Cancer Care for Aleppo"). Returned to work at Friends of the Earth, as a project manager of environmental projects designed by refugees to finish that project. October 2018 started working for Berlin government managing a home for refugees.


Go to the profile of Jessica Lewis
almost 3 years ago

Katie thank you for writing this.  I often wonder how you are.  What you've written is so important for those of us fortunate enough to not have had to go through what you have, to read.  In completely different circumstances that you know about, I know a little of the fear of a disease reappearing and it can be terrifying. I can imagine that must be one of the hardest parts of a cancer diagnosis.  Thank you for your honesty.  I will remember your words when speaking to others who have gone through,  and are going through,  what you are.  Big love xxx