‘I felt a little disappointed, I had hoped for more change’

19 April, 2022 | By Ingrid Fuchs

I have connected with group forums where women with triple-negative breast cancer share their experiences and ask questions. I have found it to be very helpful, because you realise that you are not the only one with this aggressive form of breast cancer. In many cases, some of the women are still very young, have small children or are pregnant.

I have had to learn to eat little and very often, may be even every hour just to prevent that slightly nauseated feeling as a result of the chemotherapy. It’s Sunday, a week after the chemo and I was hoping that I would be completely back to normal. I’m feeling better but I’m not my old self yet.

Jean completely shaved off his hair about 20 years ago, while we still lived in Canada, in order to raise money for breast cancer. A few times I considered taking part in a similar event, but never got around doing it. Today I asked him to shave my hair off because of the bald patches and the fact that all my hair was falling on my clothes. It took him quite some time as I still had a lot of hair. I had a few tears after it all was gone, but I don’t think it looks that bad on me. I don’t think I would like to wear a wig, I have lots of hats and buffs which come in handy now. I’m hoping that I keep my eyelashes and eyebrows a lot longer, without them I will look very bare.

Today I feel alive again and I have a lot more energy too. I managed to stay awake the whole day.

As I’m at home, I am doing most of the shopping and cooking, which I haven’t been able to do much in the past five years due to coming back late from work.

Yesterday I had a phone call from the clinical nurse specialist in Bath. They have arranged an ultrasound to check whether my tumour did shrink or not. I will see the oncologist the same day, so I will know what the next step is straight away.

The tumour didn't grow which is good news, in fact it marginally decreased, which I should be happy about. Over the last couple of weeks I have tried to feel the lesion every day to see whether it is changing in size. I'm not sure what exactly I can expect at this point but I felt a little disappointed, I had hoped for more change.

When the radiologist was looking at the images she said that the effected lymph node measured around 2.8 mm, which is big. She also mentioned that four other lymph nodes looked abnormal. I had to ask her to repeat this sentence as I really was hoping that the other lymph nodes were going to be OK, as they were viewed previously as reactive. It was a bit of a kick in the teeth hearing this. I know that in principle my treatment would not change because of this, but it will bump me up to stage 3 if I have 4 to 9 positive lymph nodes. Well at least I will be prepared. It took me more than a few days to get my positivity back.

The appointment with the oncologist in the afternoon did go really well. She gave me the option to either stay on the same treatment for two more cycles or to change earlier to a different chemotherapy regime, with the hope that this will have a bigger effect. I chose this option. Not sure if I start Monday or in three weeks, as this depends on getting the treatment ready in time.

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