Being diagnosed with Chronic
Lymphocytic Leukaemia or Small Lymphocytic Lymphoma can be a shock. You are
bound to have lots of emotions which can sometimes be difficult to understand.
These are some of the ways that we can help:
We can put you in touch with other patients through our regular conferences throughout the country. A top CLL consultant speaks at every conference, often with talks from Nurse Specialists and doctors dealing with such topics as managing the mental aspects of being diagnosed with cancer, and also fatigue. By speaking with other patients, who will be in various stages of CLL, you will be able to learn how they have been able to manage their condition. You can see if there is a conference coming up in your area here. Conferences are currently suspended due to the Corona Virus Covid-19. However, we are hosting regular live webinars. You can find details about our next one under ‘News‘.
We have a very active on-line forum, HealthUnlocked, where you will find support and knowledgeable advice on all things to do with CLL. The site also has a very comprehensive resource of CLL information, which is updated regularly. You can check it out here.
Under 60 Club
We recently launched a thriving ‘Under 60’ club for those patients within that age bracket. Although the average age for diagnosis of CLL is around 70, there are many patients who are much younger, and we felt that they were not being catered for. This is where you can find out about the Under 60 club.
We believe that the knowledgeable patient will,
by understanding their CLL and their body, be able to receive better treatment,
and are likely to have better remissions. On this website you will find details
of all the latest treatments, as well as how to monitor your CLL and recognise
what to look for.
With our sister charity, Leukaemia Care, we run
a ‘Buddy’ scheme which puts newly diagnosed patients in touch by telephone with
someone, the ‘Buddy’, who can offer support and understanding. All ‘Buddies’
are fully trained, and many patients have benefitted greatly from the service.
Again, with our sister charity, Leukaemia Care, we run Local Support Groups around the country, where patients can meet for a coffee and chat. We are intending gradually to expand these, and to see if there is one in your area, check here.
We produce a regular e-newsletter, sent to all members, giving regular information about new treatments and CLL Support activities. You can enrol and receive the newsletter here.
Looking after your mental health
Tips from a mental health counsellor
The current lockdown situation for CLL patients and the gradual easing of the lockdown has brought anxiety to many. This is an amazingly simple 7-stage set of suggestions that may help. They are undemanding but can show real results. STAND, Pop your bubble and Laugh!
Shower and stretch your muscles Get showered and dress in comfortable clothes, brush your teeth. Put on bright colours if you have them, and a favourite perfume/after shave or item of clothing or jewellery. It’s amazing how dress affects our mood. Then stretch your muscles. This may be exercise, or something simpler and gentler – anything that releases the tension in your muscles will help your circulation, detoxify you and energise you. Google ‘progressive muscle relaxation’ and find an exercise that suits you – and do it daily.
Take your medication Because of the lockdown, you may be experiencing small or big changes in your daily routine which makes it easier to forget your medications. If you are on medication of any sort, or even just daily vitamins, this should be an absolute priority at this time. Make a new rule so you don’t forget. It’s also crucial that you don’t take more than the dose recommended or prescribed by your doctor. It’s important especially right now not to use alcohol or other substances to try to cope.
Accept yourself and others Lower your expectations of yourself and those around you. None of us are at our best right now. Accept yourself without question or blame during these hard times. You cannot fail at lockdown – there is no roadmap, we are doing the bet we can in incredibly challenging times. Focus on getting through one hour and one day at a time.
Nestle A safe space from others and to ourselves is essential for our emotional wellbeing – especially when we may not be getting the physical and psychological space we normally have. This is just as important if you are living alone. Find somewhere in your home where you can retreat to. Make it cosy with cushions and blankets. If there are others in your household, ask not to be disturbed and spend at least 20 minutes a day here. Be mindfully present to sound, perhaps bird calls; a sensory feeling; something you see, perhaps a favourite object.
Drink in water, daylight, and fresh air Even if it’s just two pints of water a day, 20 minutes outside in daylight or sitting by a bright window, this is a fast way to lift your mood and spirit.
Pop your bubble Reach out to someone outside your home every day using any way of contacting – telephone, text, email, video call. And if you find yourself in crisis, there are many helplines out there with people to talk to. The CLL Support helpline is always available on 0800 977 4396.
Laugh There may not seem much to laugh at right now but try to give yourself permission to have a laugh or a little fun each day. It may be playing online games with your friends and family, or watching funny clips on YouTube, or a favourite comedy series or film. Laughter is a powerful antidote to the seriousness of the world right now.
We know that these simple tips may not suit everyone, but they have been shown to work and to help people get through difficult times. Give them a try. You might be surprised by the results!
A helpful video about managing anxiety by Kate Perry, BA, BSc (Psy), MSc, UKCP
Kate Perry is a systemic family therapist who has been in private practice for the past 10 years. She works with individuals, couples and families. Before that, she worked in the family therapy team in a CAMHS unit. She is a fully accredited member of the Association For Family Therapy and the UK Council for Psychotherapy.