Coping with myeloma
Coping with myeloma can be difficult. You may find you have a lot of different feelings. There is help and support available. There are things you can do, people to help and ways to cope with a diagnosis of myeloma.
Your feelings
You might have a number of different feelings when you're told you have cancer.
You may feel a range of powerful emotions at first such as feeling shocked, upset and find it difficult to take in anything else that is being said to you. Other emotions include feeling:
- numb
- frightened and uncertain
- confused
- angry and resentful
- guilty
- sad
You may have some or all of these feelings. Or you might feel totally different. You may feel them a few at a time or altogether, leaving you feeling exhausted.
Everyone reacts in their own way. Sometimes it's hard to take in the fact that you have cancer at all. You need to do what’s right for you to help you cope.
Helping yourself
You may be more able to cope and make decisions if you have information about your type of cancer and its treatment. Information helps you to know what to expect.
Taking in information can be difficult, especially when you have just been diagnosed or given news about your outlook. Make a list of questions before you see your doctor. Take someone with you to remind you what you want to ask. They can also help you to remember the information that was given. Getting a lot of new information can feel overwhelming.
Ask your doctors and nurse specialists to explain things again if you need them to.
You might feel that you don’t want to know much information straight away. Tell your doctor or nurse. You will always be able to ask for more information when you feel ready.
Remember that you don’t have to sort everything out at once. It might take some time to deal with each issue. Ask for help if you need it.
You can also do practical things such as:
- making lists to help you
- having a calendar with all appointments
- having goals
- planning enjoyable things around weeks that might be emotionally difficult for you
You will see your haematologist, clinical nurse specialist and pharmacist regularly. You will have lots of opportunities to ask questions.
Talking to other people
Talking to your friends and relatives about your cancer can help and support you. But some people are scared of the emotions this could bring up and won’t want to talk. They might worry that you won't be able to cope with your situation or be afraid they will say the wrong thing.
It can strain relationships if your family or friends don't want to talk. But talking can help increase trust and support between you and them.
Help your family and friends by letting them know if you would like to talk about what’s happening and how you feel.
You might find it easier to talk to someone other than your own friends and family. We have cancer information nurses you can call on freephone 0808 800 4040, from 9am to 5pm, Monday to Friday.
Or you may prefer to see a counsellor.
Your clinical nurse specialist (CNS)
When you are first diagnosed with myeloma you will meet a clinical nurse specialist. They have specialist knowledge and skills in the care and support of people with myeloma. They work closely with your doctors.
Your CNS can give you information and support about:
- myeloma
- possible treatment options
- side effects
- symptoms
- your follow up care
- support for you and your family
They can talk through any of the information your doctors have given you and answer your questions. They will give you a contact number you can call if you have a question or are not feeling well
They can be a link to other health care professionals you might need in the hospital and in the community. Coping with myeloma can be difficult. Getting information and support that you need will help you and your family to cope.
Your CNS can also help with issues such as finding financial support, psychological support or local support groups.
Coping with physical problems
Myeloma and its treatment can cause symptoms and problems. The physical changes you have depend on how your myeloma is affecting you and your bones. And what treatment you have.
It may be difficult to cope with these changes and they can affect the way you feel about yourself. Your doctor or specialist nurse will help you manage any changes. You might have supportive treatments to prevent or help control problems such as:
- infection
- low red blood cells (anaemia) causing tiredness
- bone problems including pain and spine fractures
- kidney problems
- nerve problems (peripheral neuropathy)
Tell your doctor or nurse about any symptoms that you have so they can help you.
Relationships and sex
The physical and emotional changes you have might affect your relationships and sex life. There are things that you can do to manage this.
Coping practically
You and your family might need to cope with practical things including:
- money matters
- financial support, such as benefits, sick pay and grants
- work issues
- childcare
- Blue Badge applications
- help with travel costs
- changes to your house
Talk to your doctor or specialist nurse to find out who can help. You might be able to get some benefits for yourself and the person caring for you. You might also be able to get grants for heating costs, holidays and other household expenses related to your illness.
Getting help early with these things can mean that they don’t become a big issue later. It may be helpful to see a social worker. Many hospital cancer departments have a social worker available for patients.
Support at home for you and your family
Myeloma and its treatment can cause symptoms and complications that mean that you might need some care and support at home. A lot of practical and emotional support is available to you. How easy it is to access varies a little but do talk to your GP or specialist nurses if you are having problems getting help.
GP and community nurses
Your GP manages your healthcare when you are at home. They can help with any medical problems that come up. They can also make referrals to a community service for you. The availability of the different community services may vary, depending on where you live.
Community or district nursing support
These nurses work in different places in your local area and may visit you in your home. They can:
-
give medicines or injections
-
check temperature, blood pressure and breathing
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clean and dress wounds
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monitor or set up drips
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give emotional support
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teach basic caring skills to family members where needed
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get special equipment such as hospital beds, special mattresses, commodes or bed pans
Community services vary from area to area. Your hospital specialist nurse can tell you what is locally available to you.
Community palliative care nurses
Community specialist palliative care nurses include Macmillan nurses and hospice nurses. They specialise in symptom management such as pain control, sickness, and other cancer symptoms. They also give emotional support to you and your carers.
Marie Curie nurses
Marie Curie nurses give nursing care to people with advanced cancer in their own homes. They can visit during the day or spend the night in your home to give your carers a break.
Social workers
Social workers can help to support you with your situation at home. They can arrange:
- home helps to help with shopping or housework
- home care assistants for washing and dressing
- meals on wheels
- respite care
Your social worker can also help with money matters by checking you get all the benefits you are entitled to. Or they can advise you about charity grants for things like extra heating costs or special diets.
Contact a social worker yourself by getting in touch with your local social services office. Or ask your hospital nurse or your GP to refer you.
Local support services
There is usually other help available but services can vary from place to place.
Sometimes local voluntary groups offer sitting services. Someone comes to stay with you while your relative goes out.
Good neighbour schemes offer befriending or practical help with shopping or transport.
Local cancer support groups often offer practical help. And they are a good source of information about services in your area. Ask your doctor or nurse about local groups.
