‘The atmosphere at home alternates between moments of sadness and laughter’

14 July, 2022 | By Ingrid Fuchs

The fact that the chemotherapy has not worked and I have a progressive disease is also very hard for my husband. He has just lost his father and now he has to deal with me. He feels frustrated because there is nothing he can do. We just have to go with the flow and try to distract ourselves. Again, I’m very lucky to have a fantastic family and a great support network of friends and colleagues around me.

My mind must be completely preoccupied with thoughts of breast cancer because when I woke up this morning, the first thought that came to me was how bad it is that I have cancerous lymph nodes by my collarbone (level 3 lymph nodes).

They can’t remove these lymph nodes with surgery because that would cause too much damage. It needs to be treated with radiotherapy. Of course, I need to heal first from the surgery and it’s expected that radiation will start about four weeks after surgery. A long wait with a possibility that the cancer will spread to other areas of the body – if it has not done so already. I feel like I’m a ticking time bomb. I can’t wait to speak to the oncologist after my surgery just to see if there are any other options.

I think it is important that I get a CT scan to find out if the cancer has spread to other organs. If it’s stage 4 then I can’t be cured anymore but I can be involved in different trials and perhaps immunotherapy.

At the moment the atmosphere at home alternates between moments of sadness and laughter. We joke about my illness and dying too, which I much prefer. When I told my dad and brother the news, my brother said that he could not understand how I was still smiling, he felt that he was not able to do that anymore. He doesn’t know that this is also a way of coping for me.

I’m most worried about the deterioration of my abilities. Movement restrictions, pain, lymph oedema and, with stage 4, other morbidities. I love being physically active, especially running, but I will have to grit my teeth and get on with it. I don’t think my glass is half full, but I am a realist picturing the future. I still think that I am a positive person without being overly optimistic.

As I mentioned before, I’m watching this Dutch series about terminally ill young people. Recently, I watched the coping strategies of two people who dealt very differently with the news that they had a life expectancy of around a year.

One person, finished her bucket list, did a big goodbye party with all her friends and family and arranged her funeral into detail. But then she outlived her life expectancy by quite a few years and could not handle it. She became depressed because she had reached her goals in life and felt she was just waiting for death.

The other person also outlived his life expectancy by several years but he approached it differently. Every time he had a scan and was told that his cancer was stable he went for another big dream holiday and he enjoyed his life until the last moment.

People are so different. I can see that in my family too. My husband and three of the children are very open and we discuss many aspects of my cancer.

Yesterday, the twins even asked me if I’m afraid of dying. Perfect! I don’t want to have any taboos. My fourth child doesn't talk much about it and doesn't ask many questions, she tries to process it more internally.

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