Our new blog mini-series asks 'What do you wish you had known?’ about cancer treatment before you had started it. People in the Macmillan Online Community are sharing experiences and tips about their cancer treatment and situations.
This blog focuses on chemotherapy. Online Community members tell us that hearing about other people’s experiences of treatment can make a big difference to them. Especially when they’re feeling unsure about what to expect.
Visit the chemotherapy forum, where members talk about what they wish they’d known before starting treatment.
“Some great advice here, I think that the key thing is that our experience of cancer is going to be different, and therefore our experience of chemo will also be. There are some practical tips that are relevant to all, however, so thank you for that.”
Online Community member, Chemotherapy forum
When people first hear the word chemotherapy, it can bring up feelings of fear and uncertainty. It’s easy to imagine the worst or think about what you’ve seen in films.
“I remember being told unexpectedly that I needed chemo, and the only thing I really knew about it was how it is portrayed in films or books. I didn't know about the different chemotherapy drugs or the different regimes.”
Online Community member, Chemotherapy forum
Another member offered reassurance that their experience wasn’t as bad as they expected it to be.
“I really wanted to come on here and say that chemo is not always as horrific as portrayed. I didn’t lose my hair, and I had no problem with sickness or loss of appetite.”
Online Community member, Chemotherapy forum
Many members said it helps to pay attention to your body and write down how you’re feeling.
"Listen to your body and keep your diary up to date with how you are feeling. Then you have all the info when you have your next review."
Online Community member, Chemotherapy forum
Fatigue is one of the most common side effects that members mention. Learning to rest and adjust expectations can make a big difference.
“Fatigue is real, and it is important to rest up and go with the flow for at least the first week.”
Online Community member, Chemotherapy forum
“I spent a lot of time resting. Tried to keep up with fluids. Ate little and often.”
Online Community member, Chemotherapy forum
Keeping track of side effects can also help you spot patterns and manage side effects better.
“It helped to write each day how I was feeling and about any side effects. I noticed a pattern with each cycle. For instance, I felt most unwell for the first week and then would improve by the second week.”
Online Community member, Chemotherapy forum
"With anti-nausea medicine, it works best if you take it at the first sign of nausea, before it really takes hold. And if one type does not work, then there are others that can be tried. Small meals and snacks worked best for me."
Online Community member, Chemotherapy forum
Find out more about the potential side effects of chemotherapy.
Members also shared simple, practical ideas that made treatment easier. This included what to eat to how to stay warm.
“Things can taste different when you are on chemo. Some foods that you normally like can taste off. I found lemon-tasting things most palatable.”
Online Community member, Chemotherapy forum
“In order to stay warm, invest in some thermal underwear. I also bought heated gloves with rechargeable batteries. These have transformed my walks.”
Online Community member, Chemotherapy forum
“I had a chart with what drugs to take and when. It also acted as a countdown to the end of treatment.”
Online Community member, Chemotherapy forum
Several members talked about the importance of reaching out for support. This may include healthcare professionals, helplines, or support services from Macmillan.
“They [the treatment team] normally give you a 24-hour cancer helpline and I would say never worry about calling it. The nurses on mine were really supportive.”
Online Community member, Chemotherapy forum
“Always talk through your concerns with your oncology team. Speak to Macmillan if you need an advocate; they know what they are doing.”
Online Community member, Chemotherapy forum
“I found the Macmillan Centre at my hospital to be such a supportive place. The staff were exceptional with understanding and empathy."
Online Community member, Chemotherapy forum
Find out what support services there are in your area using our online tool.
While chemotherapy treatment can be tough, many members share encouragement and hope.
“It’s important to stay positive and to look for small victories at each stage of your treatment. Celebrate them when they happen, and remember new developments are occurring all the time, so there is always hope.”
Online Community member, Chemotherapy forum
If you’re about to start chemotherapy, we hope these experiences help you feel a little more prepared and less alone.
We would love to hear from you. You can join the conversation in our Chemotherapy forum to share what you wish you had known and see what others have written. You can also browse the latest discussions and join the main Chemotherapy Forum.
You can also find people with similar diagnoses in one of our cancer type forums. These are safe spaces where you can connect with others who truly get what you’re going through.
