Getting support on the CLL journey is vital, which is why we have set up CLL Ireland.
This is a time of rapid change in the management and treatment of CLL so keeping up to date is challenging but there are useful supports available to help us on our CLL journey.
Reach out to Support Groups, Online forums, Local Cancer Support services and the Irish Cancer Society and local Cancer Support Services.
During Cancer Treatment
As well as medical information about your condition, other information will be important – such as how to tell people, how to look after yourself emotionally and physically and practical advice about things like finances.
Getting the right emotional support
Being told that you have cancer can be very upsetting and will almost certainly bring many different emotions. Friends and family may be able to offer support, but it may be harder for them to understand the long term emotional impact that you might experience.
Considering your emotional, as well as physical, needs is called a holistic needs assessment. It is important to have one a few times throughout the course of your treatment and beyond, as your emotional needs might change.
Talking to other patients
You might want to ask your consultant or key worker if you can talk to someone who’s had the same diagnosis and treatment as you. If you do this, remember that someone else’s experience won’t always be the same as yours. For example, some patients have side effects from a drug and other patients don’t.
You may also want to contact a support organisation – many provide patient meetings or further online support.
Telling others about CLL
Everyone’s different, and you might not want to tell many people – or anyone at all – about your condition. It’s your choice, and you’ll want to think about what works best for you.
Many patients tell us that keeping in touch with loved ones throughout their illness keeps them going. However, some people may find it stressful having to discuss their condition lots of times with family, friends and colleagues. You might find it easier to ask a trusted family member or friend to be your ‘information person’ and ask them to keep people updated on your behalf.
Another idea is setting up a blog or Facebook page, so you or different people can post information on it that everyone can read.
You might not want to tell many people – or anyone at all – about your condition. This is ok too, whatever works for you.
If you work or study outside the home
If you work or are studying you might want to contact your employer or college, or ask someone to do it for you. Most will do everything they can to help.
Consider telling someone at work or college about your diagnosis. It can be hard asking for time off at short notice if no one knows about your illness, and your colleagues and human resources department might be able to offer support.
You might need to make a short term arrangement with your employer or college at the time when you’re diagnosed so you can have time off when you need to be at the hospital. If you have to stay in hospital for your treatment, or you’re not well enough to go to work or college, you’ll probably need to make a more formal agreement.
You might need to bring in written proof of your diagnosis from your healthcare team, which make clear the effect cancer could have on your ability to work or study.
You might want to consider taking time out from work during your treatment. Advice you’re given on this might vary but it’s entirely your decision, so consider discussing it with your healthcare team and thinking about the demands of the specific work you do. If you’re studying at college or university, you might similarly want to think about whether you want to continue with your course or delay it for a short time.
Telling your GP and other Healthcare professionals
Your team at the hospital will keep your GP informed about your condition and any treatment you’re having. They’ll usually send your GP a letter with this information. As the patient, you’ll often be sent a copy too. These letters can have a lot of medical terms in them which you might not have heard before, or there might be something in it which worries you. If this is the case, let your hospital or GP know – a quick chat with them might help to reassure you.
It’s definitely worth telling other healthcare professionals you see – like your dentist or optician – about your diagnosis and any medication you’re taking