‘Some people are a lot worse off than me’

08 June, 2022 | By Ingrid Fuchs

Before we left the Netherlands, I made sure to tell my dad that I love him. I have always shown my dad that I love him by caring for him but I never made a point of specifically mentioning it. Strangely, it was hard to say those words aloud.

I had a meeting with the surgeon again today, we discussed the lumpectomy, where the scar would be, lymph node clearance and side effects. For example, infection, shoulder movement restriction, lymphoedema, and cording from the lymph node dissection. Cording is like a web of rope-like structures under the skin of your inner arm, which can cause tightness and pain. Although I knew all this, it’s still daunting.

My fitness is decreasing, I can still go for long walks but running is more and more difficult. I can’t run more than 500 metres in one go and I’m wondering if I will be able to continue running until the end. My legs feel tired and very heavy. I probably can do more than most people during chemo but I’m still finding it hard.

The weather was so bad one day that I didn’t go out. That’s never good for me, I get bored, restless, and I start overthinking my diagnosis/prognosis, which sends me into a negative spiral.

I’m wondering why I still do my best to stay as healthy as possible: eating lots of vegetables, hardly drinking any wine, and staying active. I have done it for years and still got this very aggressive cancer.

Time is relative. I’m watching a nine-season Dutch documentary about young people, generally between 16 and 35, with a terminal cancer diagnosis. I know, it probably sounds depressing but that is not really the case. It’s about young people not wanting to wait until they die. They try to make the most of their life and live as if every day is their last.

Some of them would love to hear that they would have a year left to live, to them it would feel like a lifetime: an opportunity to still make some of their dreams come true. They are also very honest about their feelings and thoughts. None of them want to die, but they also want quality of life.

I’m so impressed with all these young people being so brave, facing reality, accepting what is happening, and being so honest about it.

The reason why I watch programs like this is that I like to learn from their stories. It also makes me realise that many people are a lot worse off than me.

As a clinical nurse specialist in breast screening, I meet patients when they have to come back for more investigations due to an abnormality discovered on the mammogram. Part of my role is reducing anxiety by giving detailed information about the reason for the recall and explaining the process of the recall.

If women have had a biopsy and it looks suspicious, they are referred to a surgeon for results. If it looks indeterminate or most likely benign, they have the option to ring my team for the results.

We always try to be as honest as possible about the possible outcomes. Sometimes we give unexpected abnormal results but the women are very carefully prepared for this. I have been reflecting on my role and still think that I have a personalised approach to each patient. With some patients you have a better connection than others.

On a few occasions, I have felt emotionally involved with patients especially after giving them bad news. However, I never really knew exactly how a patient felt, but now I have a much better idea. I now understand the cycle of shock, realisation, sadness, acceptance, and going through these motions over and over again.

This blog was originally published in the Nursing Times. Many thanks to them for sharing Ingrid's story.