Dear all, when Alu (you may remember her from Blogfamilia, but you’ll certainly know her from her blog grossekoepfe.de, which she writes together with her husband), a mother of three, receives a breast cancer diagnosis, her world is turned upside down. What impact did all this have on her, her marriage, her circle of friends and her family? She has now written a book about it. It’s called: My Family, Cancer and Me. A personal account of the power of solidarity – and of what really helps. Here, she gives us a glimpse into her emotional world.
Dear Alu, the moment you, a working mum of three, were diagnosed with breast cancer: what went through your mind right then? Was there a lot going on, or nothing at all at first?
I received the diagnosis on the phone whilst in the car and was, understandably, both composed and taken by surprise. My first thought was “Shit” and then: “Not this too”. I couldn’t say anything except: “OK…” and kept repeating it. I think I was in complete shock at the time.
How did your husband and children take the news?
My husband was sitting next to me when the call came through. We both drove home first and then I lay down on the sofa. I didn’t know any details yet, just: “Cancer”, “Come to the clinic the day after tomorrow” and “Urgent” stuck in my mind. Afterwards, I just told the children briefly that there was something there that shouldn’t be and that we’d have to wait and see for now. Then I rang my sister and asked her to come IMMEDIATELY. Which she did.
What is your current status?
At my stage, I am not yet considered cured, as I am a high-risk patient with two different types of tumour in one breast and lymph node involvement, and I was unable to achieve a so-called PCR after all my treatments. Tumour remnants were therefore still detected in my lymph nodes.
My oncologist once said to me: “If I don’t see you here again in the next five years, then we can talk about you being considered cured.” I could reach that date in July 2027. Unfortunately, I have also developed a comorbidity that is very rare and requires a lot of medication, on which I will be dependent for the rest of my life. This also increases the risk of cancer, so unfortunately things remain precarious.
If you think back today to your initial fears following the diagnosis: how would you describe them?
If I were to describe the diagnosis, it is dark; it is like a picture frame that at first feels like rubber and then tightens ever closer around you, holding you fast, constricting you and dictating a clear course. It is tight, angular and reeks of the kind of rubber used to seal lunchboxes. Time and again you try to stretch the material, but it doesn’t work.
Was there anger within you too? A loud ‘Why?’
The Why stayed with me for a long time at the beginning. Especially in the initial consultations, oncologists do tell you what the causes might be: alcohol, smoking, an unhealthy diet, being overweight. Apart from being slightly overweight, none of the other criteria applied to me. But I’ve always carried a few extra kilos, ever since I was a child. So I asked myself: Was that the reason? Had I not looked after myself properly?
But this sense of guilt and shame doesn’t help at all. You have to let it go. Cancer can affect anyone, whether they’re overweight or slim. Whether they’re sporty or not. I was simply unlucky and – as I later found out – I also had a genetic defect that greatly increases the risk of breast cancer, thyroid cancer and bowel cancer. My grandma and my mum have also had cancer, some of them even more than once.
The anger, however, is still there. It feels something like this: up until just now, you were walking on one side of a river, everything was fine. But with the diagnosis, you’re pushed across a bridge that collapses behind you. From now on, you can only see the other side of the river – the beautiful, carefree side – from a distance. There is NO going back. From now on, you have to stay on the side with the cobblestones and can only wave across.
What got you through the treatment?
My family and friends helped me a great deal. Also, the realisation that I’d had a truly wonderful life up to that point. How lucky I’d been. I’d lived, loved and laughed. This mindset, and with it the daily practice of writing down the #3goodthings, carried me through, because although we always think it has to be the big things in life, it’s actually the little things that count so much more. So let go and trust the team of medical professionals.
You also talk about closeness and distance in your marriage. When were you particularly close? When did it feel particularly distant?
With a diagnosis like this, the relationship is naturally turned upside down. A couple who were well-established suddenly find one person in need of care. The partner has to take on an enormous amount, is also under a great deal of strain and, on top of that, fears loss. What’s more, you undergo a complete physical transformation yourself.
First I lost my hair, my contours and then my breasts. I had to come to terms with all the physical changes first, and as a result, intimacy took a back seat for a long time. At the same time, we went for walks on many days, talking about what we really want from life and what we perhaps no longer enjoy so much. We hadn’t spent so much time together or held hands like that for a long time; it brought us closer and meant we didn’t lose touch with each other.
You were faced not only with the emotional wreckage of the illness, but also with the bureaucratic hurdles – what needs to be improved urgently for those affected?
You really don’t think that, alongside fighting for your life, you’ll also have to fight for everything else. A severe disability status? A care level? Support so you can send the children on a school trip? Opportunities for everyone to have their say, and so on and so forth. I really do hope that digitalisation in medicine will help us make progress in this area.
You constantly have to lug your folder around, provide proof of everything and keep begging. Why don’t some things happen automatically? Why do I constantly have to lay myself bare, on paper, and why is it all so complicated? You try to do everything you can to stay alive, and in the evening you’re filing papers or scanning applications. It’s mad.
How has your illness affected your job and finances?
After 78 weeks, your sick pay runs out. After that, you’re on unemployment benefit or basic income support. These applications are complicated too; they put you, as the person affected, back in a position of having to beg, and that’s extremely exhausting. For example, I did go back to work quite quickly, but my health indicators were so poor that the oncologists had to put me on sick leave again. So my early return to work didn’t help at all.
In the end, we cut back on everything and, with help, managed to get me through another two years of oral chemotherapy. Now I work 20 hours a week on a part-time pension and make it very clear at work when I’ve had enough. Almost all additional projects have been dropped.
There is a term called traumatic growth. Is there anything you can say: ‘Yes, I really grew as a person through that difficult phase of my life; things are different now’?
My friends say they think I seem much more grounded. I often think I’ve developed a bit of a ‘screw it’ attitude. Little things often don’t bother me anymore. I just don’t care. I want to be happy and live in the moment. I don’t really have any long-term travel plans, or bucket lists for that matter.
I’d rather set myself realistic goals and then actually achieve them. For instance, I recently got my rehabilitation sports certificate, which allows me to teach classes. I want to use this to support cancer support groups in aqua aerobics. I’ve been part of such a group myself for two years now and really thrive in it.
When one of the trainers dropped out, I was asked to step in and decided to undertake a three-month training course with the Disabled Sports Association. I’m very proud of myself and my body for having managed this together, and that from now on I can help support other patients on a voluntary basis following their diagnosis.
When you reflect on gratitude: what is the first thing that comes to mind regarding the last few challenging years?
I think about how grateful I am to still be here. I think about how proud I am of my family and myself. And I’m proud that I wrote this book. For me, it was and remains a labour of love, which I hope will be a great help to many patients, relatives and carers.
