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Living well with CLL is challenging. You cannot control how your disease progresses. However, there are many things you can do to cope with uncertainty and fear. In addition, you may be able to slow disease progression down, and improve your chances of living well throughout your CLL journey.
Look after your physical health.
All the elements that apply to the general public are especially important when you are living with a chronic disease such as CLL. Exercise regularly, eat healthily, get to – and stay at – the right weight, stop smoking and get enough sleep.
Be aware of possible infection risks. Ask for blood tests for vitamin B and vitamin D as low levels can be easily addressed and boosting them into normal levels can help with fatigue and depression. Be quick to get medical advice as infections can escalate quickly when you have CLL.
You might feel tired a lot (fatigue). This might be caused by your treatment or condition and isn’t the same as normal tiredness which improves with rest and sleep.
While even the idea of doing something can be tiring if you’ve got fatigue, try to keep as active as you can because evidence shows that this could help to make your symptoms less severe.
It’s often a good idea for blood cancer patients to have the flu vaccine each year – your GP might contact you about this but if they don’t then you can request the vaccine yourself. It might not work as well for people with high-grade NHL but will still offer some protection.
Babies who have received the oral (by mouth) polio vaccine will pass live virus in their stools (faeces). Because of this, avoid contact with their nappies and the contents – as well as the risk of general infection from their stools, there’s a risk of getting polio.
Look after your mental health.
Avoid stress whenever possible. Make time to relax and enjoy your hobbies and interests. Enjoy life and the relationships that matter in your life. Do your best not to allow CLL to control or define you.
Be active in your care.
Do not be afraid to ask questions and to learn about options for your CLL / SLL. It can be overwhelming at first, as CLL is extremely complicated and even expert doctors differ in their opinions. However, some knowledge of CLL will help you ask the right questions and understand better what to expect. It is important to remember that you are a partner in your treatment plan. Being your own advocate can restore a sense of control in your life and make living with CLL easier.
There’s no evidence that any special diet will improve your condition or how you respond to treatment. However, you’re likely to feel fitter and healthier if you follow general advice on good diet from your hospital or GP.
You’ll need to take extra care to avoid infections that you might get from food. Your body won’t be able to destroy germs and resist infection as easily, so be careful about food ‘use by’ dates and things like keeping cooked and raw meat separated in the fridge.