Colorectal - Colorectal Cancer - Best Supportive Care

Your bowel cancer may have spread to other parts of the body such as the liver, lungs, lymph nodes or lining of the abdomen (peritoneum). Your cancer may have been at an advanced stage when you were first diagnosed or has recurred after treatment for the original cancer. You may also have been diagnosed with colorectal cancer but are not suitable for surgery or other treatments.

However, treatment such as chemotherapy, radiotherapy, colonic stent or surgery can still be given to control cancer and improve the symptoms. This is known as palliative care.

The definition of Palliative care is:

‘An approach that improves the quality of life of patients and their families who are facing problems associated with life threatening illness’.

The treatment you are offered will depend on:

• Where the cancer is in your body
• The symptoms you are experiencing
• How you have responded to other treatments
• Your overall health and fitness

It is natural to feel frightened shocked and anxious when you are told you have bowel cancer. You will be given a lot of information which may feel overwhelming at first, but you do not have to make any decisions about treatment straight away.

Questions you may want to ask at your appointment:

1.    What are my treatment options?

2.    If I have treatment how much longer am I likely to live?

3.    What happens if I do not have treatment?

4.    What are the likely side effects?

5.    What emotional, financial or family support is available?

Following your consultation, you may decide not to have any treatment, or your medical team may not think you are suitable. At this point or at any time you need help to ease symptoms of cancer your GP or Macmillan Colorectal Clinical Nurse Specialist (CNS) can refer you to the palliative team in your area.

What support is available?

Specialist Palliative Care Nurses

Are experts in medications to help you manage symptoms such as pain, nausea, and digestive problems. They can also help you plan for the future and provide emotional support.

Occupational Therapists

Can provide equipment such as safety rails, shower seats or kitchen aids to help keep you independent. They can also help manage low mood and fatigue by changing your routines and activities.

Physiotherapists

Can offer exercise programs to keep you moving and relieve pain.

Cancer Support Centres

Cancer support centres offer a range of support and information including practical support for patients, family and friends, exercise and nutrition advise, relaxation and stress management, counselling and emotional support and help claiming benefits.

Macmillan Information and Support Service (Northern Care Alliance)

The Macmillan Information and Support Service support patients from Bury, Oldham, Heywood, Middleton and Rochdale. They can provide information and support on the practical, emotional and financial effects of cancer.

You can contact them on 0161 604 5244 or email macmillan.infocentre@nca.nhs.uk

Maggie’s (based at The Royal Oldham Hospital)

You do not need an appointment, email Oldham@maggiescentres.org or call 0161 989 0550 or drop in to the centre, open Monday to Friday 9am – 5pm.

Holistic Needs Assessment (HNA)

An HNA gives you the chance to think about your concerns and the help you might need.

This assessment will be offered to you shortly after your first hospital appointment.

Once you have completed the assessment a colorectal support worker will discuss your concerns and devise a care plan with possible solutions, information and support needs.

Managing symptoms and side effects

Problems with eating, weight loss, fatigue, bowel changes, nausea and vomiting are common when you have bowel cancer, either from the cancer itself or from the side effects of treatment.

Please ask your CNS, palliative care nurse or any professionals looking after you for advice.

Macmillan also have some helpful books on managing symptoms and side effects.

Fatigue

Extreme tiredness (fatigue) can be exhausting. You may have difficulty sleeping, concentrating or remembering things.

Fatigue can leave you feeling low in mood and more emotional. Fatigue can also be caused by other things, such as anxiety, anaemia and pain.

• Keep active, too much rest and sleep in the day does not usually help. Being inactive causes muscle weakness and low mood and makes fatigue worse
• Keep to a normal sleep pattern
• Try complementary therapies, such as relaxation and yoga
• Eat well to give you more energy and strength

Changes in bowel habit

Bowel cancer can affect how the bowel works.

Tips to help diarrhoea

• Try to drink plenty of fluids to replace the fluids lost with diarrhoea
• Avoid alcohol and caffeine
• Eat low fibre foods such as white bread, boiled white rice, pasta, fish, chicken, bananas and mashed potato
• Avoid fatty greasy and spicy foods
• Avoid bran, wholegrain cereals and bread
• Limit fruit and vegetables and avoid the skins

If diarrhoea is caused by chemotherapy or radiotherapy, diet alone may not help and anti-diarrhoeal medication such as loperamide (imodium) may be needed, speak to your GP or CNS before taking this.

Tips to help with constipation

• Eat wholegrain/wholewheat/multigrain cereals and bread, fruit and vegetables
• Drink plenty of fluids including water (eating a lot of fibre without drinking enough can make constipation worse)
• Gentle exercise will keep your bowels moving

Strong pain relieving medication can cause constipation and laxatives may be needed. Speak to your palliative care nurse or CNS for advice.

Nausea (feeling sick)

• Eat dry foods such as toast or crackers and light foods such as eggs and soup
• If the smell of cooking makes you feel sick, eat cold food or meals from the freezer
• Avoid fatty greasy fried food
• Sit by an open window to allow fresh air in the room
• Try ginger biscuits, ginger ale or crystalised ginger or ginger tea
• Slowly sip fizzy drinks through a straw

Some medications and constipation can also cause nausea, please speak to your palliative care nurse or CNS for more advice.

Macmillan information leaflets on symptoms and side effects

(Order for free through The Macmillan Information and Support Service )

• Managing the side effects of cancer treatment
• Eating problems and cancer
• Managing cancer pain
• Coping with fatigue

Financial Help

Cancer can cause financial difficulties, such as added expense from travelling to hospital for treatment, car parking changes and increased heating bills.

Your income may also have been affected if you can no longer work or work part time. You may be eligible to apply for financial assistance and if someone is caring for you, they may also be entitled to benefits.

Macmillan Benefits advisors can provide advice and support on what you are entitled to, including Blue badges, Macmillan Grants (one off means-tested grants) and financial help for people expected to live less than 12 months (SR1). Benefits advisors can also help with filling in forms.

If you would like a referral to a Macmillan benefits advisor, you can speak to your CNS or contact The Macmillan Information and Support Service on 0161 604 5244 or Maggie’s Centre on 0161 989 0550.

Emotional support

It is natural to feel overwhelmed by feelings of sadness, fear anxiety or anger when you are first told about your diagnosis. If you are finding it difficult to talk to your family and friends and would like more support to help you cope with your feelings, you can be referred for counselling or psychological therapies. You may like to join a support group or online community where you can share your experience with other cancer patients.

Carers and family members may also be finding it difficult to talk about how they are feeling and may like to join a carers group.

Contact either The Macmillan Information and Support Service on 0161 604 5244 or Maggie’s Centre on 0161 989 0550 and discuss emotional support.

Writing a will and thinking about future priorities

Writing a will is often something people think about when they receive a life changing or life limiting diagnosis. It gives people peace of mind and makes sure your wishes are followed through when you die.

You may find that writing a will or updating an existing will make you feel less anxious about the future. The Macmillan Information and Support Centre at Oldham Hospital can help with writing a will and they also have information leaflets. ‘Sorting out your financial affairs’ and ‘Your step by step guide to making a will’.

Talking to children

Talking to children about cancer is extremely difficult. It is natural to want to protect them from painful experiences. You will know the best way to talk to children in your family, but you may want support with ways to approach it.

It is important to be honest and use age appropriate language. It is also helpful to talk to the school nursery or college, as they can be a valuable resource in supporting your child.

You might also want to access support for specialist counselling if you feel your child or grandchild needs it.

Counselling Service at Beechwood Cancer Centre

Beechwood Cancer Centre is based in Stockport and provide specialist counselling to people with a cancer diagnosis and their families. This includes counselling for children of all ages and young people.

You can self-refer to Beechwood by calling them on 0161 476 0384.

Alternatively, you can call the Macmillan Information and Support Service at The Royal Oldham Hospital to request to be referred by a professional.