‘I received my CT results’

12 September, 2022 | By Ingrid Fuchs

I received my test results today; the good news is that the protein marker (PDL-1) is positive, which means that I will qualify for immunotherapy and the bad news is that the cancer has spread to the bones and the liver.

I knew that it would have been a lovely surprise if I was clear but hearing about the spread was still very hard. I will be starting treatment in a little over a week, rather than the three weeks I was expecting.

My amazing ex-colleague from the chemotherapy suite has arranged it for me, and I’m very grateful to her. It will be weekly paclitaxel and immunotherapy every other week. I’m keeping my fingers crossed, it would be great if I respond well. Anyway, it gives me a glimmer of hope.

A day after the news we went to the Netherlands to spend a weekend with friends. I’d texted them about my diagnosis but they didn’t know about the outcome of the CT scan.

When we were sitting all together in the evening, they were eager to know. The air in the room was heavy with emotions. When I told them my story, I had to put all my energy into composing myself so that I wouldn’t cry. When we said our goodbyes on Sunday, I was thinking that this was probably the last time I would see them. They must have thought the same, but nobody mentioned it. The median life expectancy for bone and liver metastasis of breast cancer is around six months. If the immunotherapy doesn't work, I perhaps won’t even see Christmas.

This morning, I did a jog/walk with my friend and my abdomen felt slightly bloated and full and is also a bit sensitive to the touch. Is this the liver playing up already, I thought I would get symptoms at a later stage? I’m very in tune with my body and definitely have never experienced anything like this before. I think this must have happened over the last week. Next time I go running I will take some painkillers before to see if it helps.

I definitely feel that I’ve reached the late autumn or beginning of winter in my life, and I am a bit sad about it, definitely not what I expected or wanted. My bloods show that my liver function (ALP) is more than double what it should be. No wonder my liver is not happy, and I have these symptoms. Hopefully it goes down with the chemotherapy and immunotherapy on Monday.

I’ve now told my dad that it is very likely that I will die before him, but he hardly reacted. My aunt tried to approach the subject with him too, but he did not want to talk about it. Jean’s mum is now with us for three weeks and she doesn’t talk to me about it either. When I’m not home she is asking Jean all kinds of questions about it. I tried to open the conversation with her myself, but she too finds it too hard to talk to me about it. It’s their way of coping with it. A generation who are not used to talking about their feelings and showing their emotions. I'm so glad that I can talk so freely with most of my friends. I can imagine that I otherwise would feel very isolated.

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