The time immediately after a diagnosis is often one of great anxiety, distress, uncertainty and confusion. Urgent decisions may need to be made regarding treatment soon after diagnosis and this can be very stressful. It is important to remember that emotions can run very high when you or someone close to you is diagnosed with blood cancer or a related blood disorder. This is all normal and no one should feel ashamed or disappointed by their reactions during such a demanding time.
As the reality of the diagnosis begins to sink in, people often search for answers to why this has happened to them or what they have done to bring about such a serious illness. It is important to realise that in most cases it is not known what causes these forms of cancer. However, with enough time, enough information and a great deal of support, the shock of the diagnosis will be replaced by the reality of your situation and what you need to do next.
When and how to tell other people about the diagnosis is completely up to you. Some people initially prefer to deal with the diagnosis alone. It is worth remembering that in most cases people cope better when they feel they are not dealing with a problem on their own. There is no easy way to deal with sharing the diagnosis but the following ideas may help:
- Wait until you feel ready to tell people.
- Think about who should know and tell someone that you trust first.
- You may want to appoint someone you trust to tell other members of your family and other friends. This might be the same person who keeps loved ones informed during and after treatment, on how they can be of practical help to you and your family. This leaves you to concentrate on the treatment and your own wellbeing.
- Let people know what works for you. Those around you can be of more help if they understand when you need to talk or when you need some “personal space”.
- You may wish to use an answering machine to screen your telephone calls for a while. This way you can have more control over when and to whom you wish to speak.
Children tend to be particularly sensitive to people’s emotions. As such, they may sense that something is not quite right or they may believe that they have done something wrong to upset the other members of their family. In addition, children often take on an exaggerated level of responsibility for things happening around them. It is not easy to tell a child about a diagnosis of cancer. No one knows your child better than you and no one can tell you when or how to tell them about your illness. In general, it is important to have an open and honest approach, giving them as much information as you are comfortable with and that they can understand at the time.
Looking after yourself
A diagnosis of a blood cancer will have a high emotional as well as physical impact. Anxiety can be overwhelming at times. Initially many people feel a sense of loss of control and uncertainty about the future. It is important that you talk about how you feel with someone you trust or feel comfortable with. This might be a friend or relative or it might be your doctor or nurse. Information can often help to take away the fear of the unknown.
The best source of information is often your doctor or nurse. He or she has the most information about your particular circumstances and should be able to give you the most accurate information about your prognosis or treatment. Some people find it useful to talk with other patients (e.g. while hospitalised) or their family members, who understand the different feelings and issues that may come up for people living with cancer.
Diet and nutrition
A well-balanced and nutritious diet is always important for your body. Good nutrition gives you energy and helps your body cope with the side effects of blood cancer treatment. However, there are many reasons you may not feel like eating during treatment and, in some cases, for some time after treatment has finished.
Being nauseated, vomiting or finding that your sense of taste or smell has changed as a result of treatment can all cause a loss in appetite and a disinterest in food. Feeling down or depressed can also affect how you are eating.
You may wish to see a nutritionist or dietitian who can advise you on planning a well-balanced and nutritious diet. Instead of having large meals three times a day, try to eat small nutritious meals or drinks as frequently as you can tolerate.
If you are thinking about using herbs or vitamins it is very important to talk this over with your doctor first. Some of these substances can interfere with the effectiveness of chemotherapy or other treatment you are having.
Complementary therapies are not considered standard medical therapies. However many people find that they are helpful in coping with their treatment and recovery from disease. There are many different types of complementary therapies. These include yoga, exercise, meditation, prayer, acupuncture, relaxation and herbal and vitamin supplements.
Complementary therapies should ‘complement’ or assist with recommended medical treatment. They should not be used as an alternative to medical treatment for blood cancers. It is also important to let your doctor or nurse know if you are using any complementary or alternative treatments, in case they interfere with the effectiveness of chemotherapy or other treatments you may be having.
Body image and sexuality
Your diagnosis and treatment may well have some impact on how you feel about your sexuality. Hair loss, skin changes and fatigue can all reduce feelings of attractiveness. You may experience a decrease in libido, which is the body’s sexual urge or desire, without there being any obvious reason.
It may take some time for things to return to what you are happy to consider ‘normal’. Partners are sometimes afraid that sex might in some way harm the person who has cancer. This is not likely as long as the partner is free from any infections and the sex is relatively gentle. It is perfectly reasonable and safe to have sex when you feel like it, but there are some precautions you need to take. It is usually recommended that you or your partner do not become pregnant while you are receiving treatment and for some time afterwards. This is because some of the treatments given might harm the developing baby.
- Try to remember that over time your physical appearance will improve.
- Do things that make you feel good about yourself. This might include enjoying the company of friends, doing regular exercise and relaxation techniques.
- Simply touching the person you love can give a powerful sense of acceptance and warmth and a sense that you are sharing their journey with them.
- Look Good… Feel Better is a free community service that runs programs on how to manage the appearance-related side-effects of cancer treatments. Contact them on 1800 650 960 (freecall) or visit www.lgfb.org.au.
- If you have any questions or concerns about sexual activity or contraception, talk about these with your doctor or nurse or ask for a referral to a doctor or health professional who specialises in sexuality.
Fertility and pregnancy
Some types of chemotherapy and radiotherapy may cause a temporary or permanent reduction in your fertility. In women, some types of chemotherapy and radiotherapy can cause damage to the normal functioning of the ovaries. In some cases this leads to menopause earlier than expected. In men, sperm production can be impaired for a while but the production of new sperm may become normal again in the future.
It is very important that you discuss any questions or concerns you have about your fertility with your doctor. If possible, talk to your doctor about this before you start treatment. For men, sperm banking is quite a simple procedure whereby the man donates semen. This is then stored at a very low temperature (cryopreserved), with the intention of using it to achieve a pregnancy in the future. For women, egg, embryo, and ovarian tissue storage may be used to protect fertility. At the moment, egg and ovarian tissue storage are still exploratory techniques, so they are not guaranteed to protect your fertility in the future. For women, the use of donor eggs might be another option to consider. These eggs could be fertilised using your partner’s sperm and used to achieve a pregnancy in the future. It is important to understand that for many reasons, getting pregnant and having a baby is not guaranteed by using any of the fertility methods above.
As some cancer treatments can affect the ovaries, they can also lead to an early onset of menopause. If menopause happens early, it can be sudden and understandably, very distressing. Hormone changes can cause the classic symptoms of menopause including: menstrual changes, hot flushes, sweating, dry skin, vaginal dryness and itchiness, headache and other aches and pains. Some women experience decreased sexual drive, anxiety and even depressive symptoms during this time. Discuss any changes to your periods with your doctor. He or she may be able to advise you, or refer you to a specialist doctor (a gynaecologist) or clinic that can suggest steps to take to reduce your symptoms.
Being pregnant and having a blood cancer or blood disorder is rare and poses challenges for you and your unborn baby. When a blood cancer or blood disorder develops during pregnancy, the effect on your physical and emotional wellbeing is increased and your ability to cope with day to day activities and responsibilities is challenged. Treatment options may vary depending on the stage of your pregnancy and the type of blood cancer or blood disorder you have been diagnosed with. Your health is at the forefront of all treatment options with the primary aim being to reduce any treatment side effects to you and your baby.
An acute blood cancer or blood disorder often means the disease is ‘fast growing’, causing many serious symptoms and consequences and treatment may need to begin straight away. It is important for you to be supported and provided with all the relevant information that you and your loved ones need so that you are able to make informed decisions about the treatment options available to you.
Chronic blood cancers or blood disorders present a different set of challenges for you, your baby, loved ones and medical team. A chronic blood cancer or blood disorder often means the disease is slower in developing or ‘slow growing’. In some cases, patients who are already being treated with medication for a chronic blood cancer or blood disorder may be advised by their medical team to consider an alternative drug that may have less side effects on the baby during pregnancy.
If you are in the later stages of your pregnancy your medical team may induce an early birth, but will delay this as long as possible. In some instances, it may be recommended that your baby is delivered in between your treatment cycles. Your medical team will weigh up all the risks and benefits to you and your baby and they will advise you accordingly.
Breastfeeding your baby may not be appropriate during or after certain treatments for blood cancer or blood disorders, as some medications may be present in the breast milk and passed on to your child. However, there are many circumstances in which breastfeeding may still be an option, even if for a brief period. The possibility of being able to breastfeed should be discussed with your treating medical team.
Developed by the Leukaemia Foundation in consultation with people living with a blood cancer, Leukaemia Foundation support staff, haematology nursing staff and/or Australian clinical haematologists. This content is provided for information purposes only and we urge you to always seek advice from a registered health care professional for diagnosis, treatment and answers to your medical questions, including the suitability of a particular therapy, service, product or treatment in your circumstances. The Leukaemia Foundation shall not bear any liability for any person relying on the materials contained on this website.