Being cancer free does not always mean going back to how life was before. For many people, it means learning to live with long-term health conditions.
The Online Community is here for anyone affected by cancer to find support from people who understand. Whether you have just been diagnosed, are going through treatment, or are adapting to life after cancer.
Last year, we invited members of the Online Community to share what challenges they have experienced after treatment. This blog brings together some of what was shared.
Many members spoke about side effects that continued long after treatment ended, often affecting daily routines, mobility, and confidence.
One member described chemotherapy-related nerve damage.
“I developed peripheral neuropathy… tingling, numbness, pain and changes in sensations… It does affect me every day.”
Another shared how bowel symptoms became more limiting than the cancer itself.
“I have been left with LARS… it has been so much more life limiting than the cancer.”
Radiotherapy-related effects can also be common.
“My pelvic radiotherapy has left me with long term side effects that mean regular upset stomachs and food intolerances.”
Members of the Community often highlight the importance of raising side effects early and keeping track of them:
“Speak to your CNS as soon as they start. Keep a diary of what the effects are and when they happen.”
If you are experiencing ongoing physical effects after cancer treatment, it may help to talk with someone from your medical team. You can also post a question to Macmillan’s Cancer Information Nurse Specialists in Ask a Nurse. To speak with a nurse on a call, you can phone the Macmillan Support Line for free (in the UK) on 0808 808 00 00.
Some members shared experiences having major surgery and its long-term impact on their bodies.
“I don’t think I will ever get over this surgery as the after effects are awful. My body image is not very nice to look at.”
They also spoke about reduced movement and ongoing monitoring.
“I only have 75% movement in my right arm… I now have to have chest X-rays for life.”
Another member reflected on years of complications and having to adjust to a new normal.
“Mealtimes are interesting… little and often… if I slip up then it’s dumping syndrome.”
For many, the emotional impact of a cancer diagnosis carries on after treatment.
Fear of recurrence has often been mentioned.
"I will always live under the shadow of ‘will it come back’.”
Some members spoke about the sudden quiet once treatment ended.
“Once I finished treatment… I really felt a bit lost… for months I was up and down hospital… and then nothing.”
If you can identify with these feelings, you’re not alone. You can connect with other's who understand, in the Life after cancer forum.
As well as challenges, members shared how they have adapted through small, intentional changes.
One member described rebuilding routine.
“I have started a daily exercise routine, meditate every morning at 6:30am watch what I eat… as much as my energy will allow.”
Finding something gentle and meaningful helped others cope.
“I started painting and drawing… sitting in the garden helped. Nature is healing.”
Ruth had chemotherapy, surgery and proton therapy for Ewing's sarcoma. In the video linked below, she shares practical tips for coping with fatigue after cancer treatment. Ruth talks about: changing your exercise routine, getting reasonable adjustments at work, and being upfront about your limitations.
Life during and after cancer can be very challenging. Here in the Online Community you can be real about the the tough times as well as share hope and encouragement.
“There’s ups and downs and I am still very positive… I would like to give something back.”
Some members have found it helpful to join courses and connect with other people who are in a similar situations.
"I recommend the Macmillan HOPE course which can be done online and is free."
If you are navigating life after cancer, you can join in the discussion here. You may also want to ask a question to a Cancer nurse specialist in our Ask a Nurse forum.
No matter what, please know that there are people that are here to support you.
You may also benefit from listening to Macmillan's Life after cancer treatment audiobook or reading about Late effects of cancer treatment.
