Living with the effects of treatment

Identifying effects of treatment in the short term and long term.

Some effects of treatment may be unwelcome, but for some people, the unwanted effects may be balanced by feeling that going through cancer treatment has enabled them to reflect on what they value in life. It has led to greater feelings of peacefulness and purposefulness, satisfaction and self-confidence. Or it has brought a greater closeness with some family members or friends.

But some treatment consequences can have a major impact on feelings of well-being: they may make it difficult to return to everyday activities, work or hobbies, particularly if these involved physical exertion at even a minor level. They can also affect family and friendship relationships, and emotional wellbeing. Psychological effects of treatment are discussed in the section Improving my psychological wellbeing following treatment.

  • Scars
  • Surgical loss of tissue /disfigurement
  • Hair loss
  • Reduced mobility
  • Weight gain /loss
  • Lymphodoema

Many of these effects are immediately visible after surgery or treatment, even when clothes or a wig hide the effects from all but a partner or spouse. But some may not be so immediate – such as changes in weight or lymphoedema. The significance of visible body changes is a very subjective experience – a nurse, doctor or friend may reassure you that “the scar is very small and neat”, but it may still be felt as a significant change to how you usually see and accept your body’s appearance. If it matters to you, then it really does matter – it’s not relevant whether others see it as less troubling.

Many effects improve with time (e.g. hair loss), but some may persist and cause distress even after some months.

  • Fatigue
  • Pain
  • Vomiting
  • Nausea
  • Loss of fertility
  • Breathlessness
  • Insomnia
  • Forgetfulness, difficulty with cognitive or thinking functions.  Often dubbed “chemo-brain”, these are after-effects of chemotherapy or radiotherapy
  • Appetite changes
  • Swallowing difficulties
  • Voice changes, or loss of voice
  • Hearing loss
  • Sexual function (impotence, pain on intercourse, loss of sexual interest)
  • Urinary incontinence
  • Faecal incontinence
  • Gastric disturbances

Like visible effects, some of these changes may not be so immediate. A nurse, doctor or friend may reassure you that these changes are minor, or don’t matter, but if they have a big impact on you, then it really does matter – it’s not relevant whether others see them as less troubling.

Many effects improve with time (e.g. pain or fatigue), but some may persist and cause distress even after some months.

For both visible and invisible effects, a person may have very mixed feelings: “I’ve survived, I’m grateful for the clinical marvel of treatment”, but they may also feel resentment that treatment has left these unwanted effects which can be difficult to live with. They may also feel that they were not prepared for these changes, or that they did not realise that they would affect their lives so much. Often, when a doctor or nurse is describing these side-effects before treatment, people are feeling too anxious or distressed to properly understand what the effects could mean. And patients are often very keen to just get on with the treatment as soon as possible, making it difficult to focus on what life might be like afterwards.

Some people even report that they would not have undergone treatment if they had known that the effects would be hard to live with.

These may be understandable feelings; don’t feel guilty if this happens for you. However, it may be hard to talk about them with close family or friends – they are grateful that you have survived, so they may encourage you to minimise the impact. To help you live more comfortably with these thoughts look at the pages Improving my psychological wellbeing following treatment for advice and information.

And reassuringly, most people do eventually find a way of making adjustment to these effects, and adapt their life-style to accommodate them.

Further support and help:

The advice on these pages is designed to help you prepare for the treatment ahead and support you through to recovery.

If you need further advice and support please discuss this with your key worker or healthcare professional.

  • Cardiff and Vale University Health Board Cancer support line:
    02920 745655  (9:00am to 12:30pm and 1:30pm to 4:00pm)
  • Macmillan Cancer Support:
    0808 808 00 00
  • Maggie’s Cardiff:
    029 2240 8024
  • Tenovus Cancer Care:
    0808 808 1010
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