'I was admitted to hospital'

11 October, 2022 | By Ingrid Fuchs

I’ve had to give up two of my life’s greatest pleasures, running and working, I can’t do it anymore. More and more I’m saying goodbye to friends and family, realising that I probably won’t see them again.

We travelled to the Netherlands to return my mother-in-law after her stay with us in the UK, and then picked up my dad and brother on the way back. It will be very hard to say goodbye to them. Perhaps I should just try not to think about it.

My dad and brother have been staying with us from Saturday and since then I feel extremely fatigued, no energy at all. I’m spending 95% of my time lying on the couch. Everything is effort. I look white like a sheet, but I am not a candidate for a blood transfusion yet. Maybe the immunotherapy will have a big effect on me too.

Anyway, the oncologist is hoping that I will start feeling the benefits of the treatment

soon. The good news is that my blood results have remained stable. It would be so nice if I would start feeling better again and able to go out with my family.

They all find it difficult to see me like this. Let’s wait and see how things develop, but I would rather have quality of life than quantity. My son has come back from Singapore to be with me. He is such a fantastic guy. I love him to bits, he is very caring and hands on.

On Thursday I had a chat with my oncologist. She said that my fatigue could be caused by the immunotherapy, and that sometimes the second cycle is better tolerated. I mentioned the bloating, but she found no sign of fluid in my abdomen. We also talked about the possibility for genetic screening, to see if my cancer has any genetic markers that could help on deciding about new treatments. Seems like I’m a pretty unique case.

The Monday after the start of my second immunotherapy cycle was a bit of a rollercoaster. I developed a fever during the treatment, which had to be stopped, and I was admitted to hospital. They took blood cultures as they assumed it was a gall bladder infection.

The blood cultures came back negative, and they decided to also check my heart as they heard a possible murmur. Suspecting it might be endocarditis, a serious heart valve infection, I was moved to the Cardiology unit.

While waiting for more cultures to come back, they also did an ultrasound of my heart. All the tests came back clear. It was a huge disappointment because I was hoping my symptoms could be resolved, and I could go home feeling better.

On top of that, I tested positive for COVID on a routine test a few days later and I had to be moved to an isolation room. Luckily, my COVID symptoms were mild and I only developed a cough.

During my stay in hospital my tummy had become swollen and my bellybutton changed shape. We started to think this may be caused by ascites, a condition where fluid collects in the spaces of the abdomen, which is often a sign of end-stage cancer but can also be caused by immunotherapy in rare cases.

Since it was so soon, we assumed it may indeed be caused by the immunotherapy. A couple days later as I was lying in my hospital bedroom, I had a realisation. It’s not the immunotherapy, but it is the cancer.

The disease is advancing unexpectedly fast and the process of dying has started. An ultrasound confirmed my suspicions, ascites was building up, but not only that, my spleen was enlarged, and the cancer had spread even further. With this news I asked my oncologist to end the treatment.

I don’t think there is any point to continue. I requested to be discharged so I could go home and spend the final months of my life with my family.

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