Living well with myeloma : University College London Hospitals NHS Foundation Trust

Below you can find information about the support you can have with some of your concerns while living with myeloma. Talk to your hospital doctor or clinical nurse specialist (CNS) if you have any worries or if you want to know more about anything mentioned on this page.

We understand that your concerns can change over time. Ask your hospital doctor or CNS if you need support or information that is not listed below.

If you’d like a printed copy of this information, please ask your CNS.

Being active can help you to manage treatment side effects and feel better overall. If you have complex needs, talk to your hospital doctor or CNS before starting any new physical activity. You could ask your GP to refer you to a local exercise referral scheme.

The following organisations have information about physical activity:

Complementary therapies, such as massage and reflexology, are available at UCLH. Ask your CNS to refer you. Visit our complementary therapy web page or call 0203 443 8663 to find out more about this service.

You may also get complementary therapy through charities such as:

Marie Curie hospice / 0800 090 2309
Maggie’s / 0300 123 1801
CHAI / 0808 808 4567 (this charity is for members of the Jewish community).

There may be a charity near where you live that offers complementary therapies. Ask your CNS to help you find one. If you live in London, visit our web page on further support and look at the section 'London cancer support centres'.

The UCLH Macmillan Support and Information Service hold regular workshops to help manage fatigue or improve sleep. There’s more information about these workshops on our wellbeing programme web page. We also have a list of helpful resources on our website, including information about other organisations that offer support. You can also call 020 3447 3816 to speak to a UCLH support and information specialist for advice.

Money can be a worry when you have myeloma and your hospital doctor or CNS can refer you for welfare and benefits advice. Call 020 3447 8663 or visit our welfare and benefits web page for information about the service.

Financial advice is also available from the following organisations:

Macmillan Cancer Support / 080 8808 0000 (search ‘finance’)
Citizens Advice / 080 0144 8848 (search ‘financial advice’)
Age UK / 080 0678 1602 (search ‘money and legal’)

If you have a reduced appetite or have lost or gained weight, ask your hospital doctor or CNS to refer to a UCLH dietitian. Visit our diet and nutrition advice web page to find out more about the service.

You can get information on healthy eating from the following organisations:

Cancer Research UK (search ‘diet’)
Macmillan Cancer Support (search ‘healthy eating’)
NHS

Some people who have myeloma notice changes in their mood. If you have ongoing anxiety or low mood, or if you find it difficult to manage your thoughts and feelings, you may need psychological support. Your hospital doctor or CNS can refer you to the UCLH psychological and emotional care team for an assessment. Visit their web page for more information about the service or call 020 3447 3816.

You can also get emotional support from:

Your GP – ask them to refer you for ‘talking therapies’.
Your CNS.
A support and information specialist. Visit our support groups web page or call 020 3447 3816 to find out more.
UCLH myeloma support group. Visit our support groups web page or call 020 3447 3816 to find out more.

Both cancer and its treatment can cause pain. If you are finding it difficult to manage your pain, your hospital doctor or CNS can refer you to a specialist pain service. There’s general advice about managing pain on the Macmillan Cancer Support website and our online directory of health and wellbeing resources.

Sometimes cancer or chemotherapy can cause problems with your sex life. If you have any concerns, please tell your hospital doctor or CNS. They can refer you to a specialist service.

Macmillan Cancer Support has general information about sex and cancer (search ‘sex and cancer’). Or visit our online directory of health and wellbeing resources.

Support to stop or reduce smoking or drinking alcohol is available from the NHS.

Travelling abroad

If you want to travel abroad, speak to your hospital doctor or CNS. They can advise you on when it would be safe for you to travel. There’s also information on Myeloma UK’s website (search ‘travel’). 

Travelling around your local area

You may qualify for a blue badge if you can’t walk long distances and need a car to get around. You can apply for a blue badge online. Or ask your CNS or support worker to refer you to the UCLH welfare and benefits team for help with your application.

If you live in London, you may qualify for reduced taxi fares through the London Taxicard scheme. Speak to your CNS or support worker for more information. 