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I am still me despite the illness.

Nikola Skondrojani

I threw myself into the next treatment with passion.

I found a lump in my breast during a self-examination. I was 33 and on maternity leave. Before the final diagnosis arrived, everybody tried to reassure me that I was just too young to have cancer. Yet my mother had had breast cancer, and so they did end up testing me. I underwent chemotherapy and a single mastectomy. Over the next two years I underwent a gynaecological operation and the preventive removal of my other breast with immediate double reconstruction using implants.

I had not expected the disease to return last year. I had thyroid surgery in January, and everything had gone well. While waiting for the histology results, I had a sore throat but told myself that it was a consequence of the operation. At the same time, I discovered a growth on the edge of my tongue. They took a sample and 4 days later told me it was squamous cell carcinoma of the tongue. During the operation they also found that I had metastasis in my neck. One year later I am again undergoing treatment for breast cancer.

It was a shock to everybody when I fell ill again. At the same time, everybody knew me and knew that I want to stay alive for a long time and create many beautiful things. So I threw myself into the treatment with passion. I tried to undergo the treatment as aware as possible, after obtaining information and recommendations from physicians.

Not concealing my diagnosis was the best thing I could have done.

I cannot imagine keeping such a serious illness secret. I told my immediate family – my father and my sons – that I had breast cancer. The younger son was two-and-a-half, the older ten-and-a-half. I spoke to them openly, and explained that I would be undergoing treatment, which meant that I would not be feeling well and that I would lose my hair. Today I still think that it was the best decision I could have taken.

It is important to be able to ask for help.

The greatest relief for me is when people behave towards me as they did before. When your friend asks if they can do something for you. To do normal, regular things when possible. It is very important to be able to ask for help.

Don’t call me a fighter.

I am surprised that the topic of metastatic patients is so invisible and taboo. People have no idea what it means to be a metastatic patient. They don’t know how to communicate with you or how to help you. They often try to encourage you in a very inappropriate way. It makes me angry when people say to me, “You have to fight – you are a fighter”. Or when they start sending me recommendations for alternative healers or products. I understand that they do not know how to communicate with me, or how to show compassion and sympathy – I know they are saying these things because they are worried about me. But still – please – don’t talk to me like this!

What I don’t like

During my treatment, I have experienced excellent communication from physicians, but also communication I would sooner forget. Last year, when I was diagnosed with cancer of the tongue, I myself had to ask the doctors about the treatment I would have, and I had to organise the operation to ensure it took place as soon as possible. This was actually lucky in the end because the tumour had already metastasised. It also bothers me that every time I go for a check-up at the ORL oncology department, I see a different doctor and have to explain to them time and time again when and how I have been treated. The protection of personal data today can also sometimes seem bizarre, as the workplace I go to is only divided with screens and so I hear all about the other patients and they of course hear everything my doctor and I are discussing. That is something that really should not happen.

Message to patients

Don’t lose hope – make the most of every moment, every day.

Message to the public

Behave towards us as if we were healthy – we have not changed.