Coping and support when you have bone cancer

Coping with a diagnosis of primary bone cancer can be overwhelming. Help and support are available, including things you can do, people that can help and ways to cope.

You are likely to feel very uncertain and anxious about the future knowing you have cancer. You may find it impossible to think about anything other than having cancer.

Some people say a diagnosis of cancer helps them appreciate ordinary everyday things much more than they did.

If you have advanced cancer you will need to work out your priorities. Think about how you want to spend your time - what is important to you and what is not.

Some of your future plans may no longer be realistic but you do not have to abandon them all. You may be able to adapt some. And you may get round to doing something you have always wanted to do, but were not able to make time for.

If your cancer has spread into bone from another part of the body, it is called secondary or metastatic bone cancer.

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.

Your surgeon will try to save your limb where appropriate (limb salvage procedure). But there are some people who will require amputation. The loss of a limb can be very difficult to cope with. Some people have emotions of grief and bereavement. It is important to remember that coming to terms with your feelings about having an amputation may need as much attention as the practical changes.

There is no set way of handling your news, but experiencing different feelings is a natural part of coming to terms with having cancer. These feelings are likely to come and go, some may even come up when you are not expecting it.

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

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.

Cancer chat 

You can chat with other people affected by cancer in our online forum. 

Clinical specialist nurses

Specialist nurses can help if you’re finding it difficult to cope or if you have any problems. They can get you the help you need. They can also give you information.

Specialist nurses are usually your first point of call if you have any questions or concerns. Make sure you know who your specialist nurse is and have their telephone number.

Support groups

You may find it helpful to go to a support group to talk to other people affected by cancer.

Physical problems

Bone cancer and its treatment is likely to cause physical changes to your body. Your doctor and specialist nurse can help you manage these changes. They can refer you to see other health professionals such as physiotherapists.

Many of the physical problems you have will be due to your treatment. Most things should improve once the treatment ends. One of the most common problems people have is tiredness. This can continue for months after treatment.

You will lose your hair. Many people find hair loss difficult to cope with. But your hair will start to grow back within a few weeks of finishing treatment.

Remember that your hair may not grow back exactly the same as it was. The colour may be slightly different and it may be straighter or curlier than before.

Other physical changes depend on the treatment you have had. For example, if you had an amputation of a limb it is a lifechanging event. It will take time to adjust emotionally and physically. You will have a lot of help from your healthcare team.

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.

Getting back to normal after bone cancer treatment

People often think that once they have had their last treatment everything goes back to normal. You might feel frustrated that it takes time to get over the treatment. But you need to give yourself time to recover.

You may be thinking about work, college, university, going on holiday, or just planning for the future. Remember that it is better to feel ready to go back to work or school than to try and go back too early and have to take more time off. Think about how you feel both physically and emotionally. Many people find the diagnosis and treatment draining. You may want to think about going back part time at first. Then you can build up to full time when you feel you can manage it.

Going back to college, university or work

Some people worry about going back to work, college or university, especially if they have had a long time away. You may be worried that everything will have changed or that people won’t know what to say to you. You can talk to your tutor or employer about whether you would like them to tell people about your cancer or whether you would like to do it yourself. There is no right or wrong way of doing this. Some people find it easier if everyone knows before they get there so that they don’t have to explain over and over again. Others prefer to tell people in their own time.

Coursework and exams

Colleges and even exam boards are generally very helpful when students have health related problems. Talk to your teacher or personal tutor as soon as you can. They will be able to suggest ways that you can try to keep up. Or it may easier to take a year out. Your place will be kept for you until the following year.

Your clinical nurse specialist can also write a supporting letter. The letter can explain the circumstances surrounding your diagnosis and treatment.

If you are unwell when taking exams, your teacher or tutor can let the exam board know and make allowances for this. You should have the option of delaying taking your exams until you are well enough. That may be the better option, rather than struggling through and not doing as well as you think you should.

Work

Treatment for bone cancer may mean that you are not able to work for a few months or a year or so.

Disability Discrimination Act

Towards the end of life

It’s natural to want to find out what is likely to happen in the last few weeks or days of life.

You might need to choose where you want to be looked after and who you want to care for you.

Support at home for you and your family

You might need some care and support at home due to cancer or its treatment. A lot of practical and emotional support is available to you. 

GP and community nursing support

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.

District nurses

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

• clean and dress wounds

• monitor or set up drips

• give emotional support

• teach basic caring skills to family members where needed

• 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 specialist 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.