Living With Blood Cancer 15 March 2021 MedicAlert Living with blood cancer is tough at the best of times but add shielding and lockdown restrictions, means a desperate time for many. In the UK there are approximately 250,000 people living with blood cancer, it is the fifth most common cancer and most common type of childhood cancer. This article addresses the subject of not just how to live with blood cancer, but how to live well with blood cancer and includes suggestions and tips gathered by people with blood cancer which are significant to those going through treatment, on ‘watch and wait’ or in remission. We look at how MedicAlert can support you and your family during the toughest of times, helping you gain independence. Stay active but listen to your body Exercise is probably not at the forefront of your mind when you have cancer and going through treatment, but the benefits can aid recovery. According to Leukaemia Care exercise can: reduced fatigue reduced anxiety and depression and an improved mood from endorphins produced while exercising strengthen muscles and bones better heart health With this is mind, here are some ideas: Start with gentle exercise. You may have just come out of the worst days of your treatment cycle so taking it slowly and gently is important. You may want to start with five to ten minutes per day. Walking and stretching are great starting points. Yoga is a safe way to exercise and is great for improving strength and flexibility. It is also proven to manage stress and improve moods. Set yourself small goals and record your achievements. Adding extra minutes per day to your exercise plan or walking for further will improve your fitness and give you a sense of achievement that will lift your spirits. Make sure you reward yourself for your accomplishments! Always make sure you do a form of exercise you enjoy; motivation will be hard enough as it is, and you are more than likely going to keep it up. Online workouts are great if you are shielding or more comfortable exercising at home. There are plenty of options to choose from which are dedicated to those with cancer. Check out YouTube for low impact aerobic, strengthening and stretching exercise videos. Blood Cancer UK also has a good selection of exercise videos on their website. With spring upon us, nothing will beat a walk in the fresh air. MedicAlert can ease the worry of exercising away from home as all your vital medical information is engraved on your piece of jewellery so if anything happens, the right information is available for initial care decisions. Always remember to talk to your doctor or support staff before embarking on an exercise regime as there will be certain recommended exercises and precautions for those who are suffering with anaemia, neutropenia, thrombocytopenia and peripheral neuropathy. Find a hobby to occupy your time, as you will have a lot of it! Whether you are at hospital on treatment day or at home shielding, filling time can prove quite an undertaking. As mentioned above, exercise is one way, but there will be many times when you are not feeling energetic. Why not revisit a favourite hobby that may have been forgotten since a diagnosis or learn something new? There have been so many studies proving that arts and crafts do wonders for a person’s wellbeing. Your mind and your hands totally immersed in being creative will offer a much-needed break from thinking about cancer. Websites such as Craftcourses or ClassBento offer a huge range of online workshops but if you want to be more sociable perhaps join or suggest a crafty group amongst friends so you can craft and catch up at the same time. Give yourself time to settle in to a ‘side-effect’ routine Living well with blood cancer must include how you cope with treatment. Each cancer sufferer’s experience will be different, after all there are over 100 different types of blood cancers and chemotherapy and radiotherapy treatments are not just one size fits all, they are tailored to each patient. This means side effects will vary. Side effects will also occur from the cancer itself. This tip concerns learning how the treatment will affect you. Do you experience certain side effects depending on where you are on the treatment cycle? “I had chemo on a Wednesday, I knew by Friday I would start getting the metallic taste in my mouth and then insomnia would come, followed by fatigue, then the pain and various niggles (mouth ulcers, headaches, constipation). That would last a week or so before I had a couple of days of normality before jumping back on the cycle again.” - Cheryl, 45, in remission from Non- Hodgkin’s Lymphoma Recognise when you are not ok. Knowing when you will face certain side effects means you can try and plan the better things in life on certain days. You will know when you are up to socialising, up to exercising and when you know your bed or sofa is the best place. Try and put your mental health front and centre Doing our best to look after our mental health is paramount to living well, but a lot of the time our mental health can suffer. The stats are alarming, with 1 in 3 people with cancer experiencing a mental health problem such as depression and anxieties before, during or after treatment, according to mentalhealth.org.uk. There are many ways to support your mental health; exercise and hobbies have already been mentioned. When in isolation the following ideas can be life savers: Meditation is well known to reduce anxiety and stress and by doing it regularly it will become easier to clear your mind and feel the benefits. Connect with nature – birds are at their loudest during spring time as they are gearing up for nesting. Buy a bird feeder for your garden or window and be pleasantly surprised how quickly you will receive a visitor. Seeing your friends online is not the same as in person but planning a call will brighten up your day. Reading is a great form of escapism which gives your mind some time off. Blood Cancer UK’s survey of 1,077 people with blood cancer such as leukaemia, lymphoma and myeloma looked at the impact of coronavirus on those who said they were shielding. They found that over half of people were struggling with their mental health. Almost one in 10 said the impact was severe. To avoid anxiety, a great tip is to stay off Google! Your treatment is so unique to you with factors such as strength, frequency, additional meds, length of treatment. These will not be covered or determined by the internet. Have trust in your doctor or consultant with knowing you and your cancer journey. Allow yourself to sometimes ‘let go’ with food – a good balanced diet will not cure your cancer but will help in living well. If you are having a bad time, then it is ok to give the balanced diet a miss and comfort eat – a short but well needed treat for your mental health. Achieve the right balance of involving loved ones and protecting them The affect of your cancer on loved ones is colossal as they see you in so much pain and distress and feel absolutely helpless. Some patients have said living with cancer is harder for their loved ones than for themselves. It is your choice about how much detail you want to share about your illness to others and finding a balance of keeping your loved ones in the loop but also protecting them from the more delicate aspects of your illness. Whatever you feel is the best solution, you will never stop your loved ones from worrying. Your loved ones cannot be with you 24/7 to help care for you and that will be tough for them. Becoming a member of MedicAlert can be your way to help alleviate the stress for them. They will have peace of mind that your most vital medical needs, consultant information, advance decisions and clinical reports are stored in one place in case of an emergency. Your loved ones will feel more at ease when you are out and about, living life to the full. Connect and share experiences with other people living with blood cancer You may not feel you want to talk about your blood cancer to your friends, especially as it is pretty much all you deal with on a daily basis. You may want your friends to be your respite, there to cheer you up and take you away from your life with cancer. You also know how hard it is for friends to know what to say. But you also need and want support. Talk to others who are also suffering with blood cancer. This is when support is at its most beneficial as you have shared knowledge and understanding of your experiences. If you're anxious being on ‘watch and wait’, you can talk to someone who is at the same stage. If you are starting your treatment, talking to someone who has been there and in remission can give you a lift. There are many online communities and forums to join including: Cancer Research UK, Macmillan Online, Leukaemia Care and Blood Cancer UK. Steps towards achieving independence Achieving independence can refer to coming out of COVID-19 restrictions, being in remission and learning to live well with cancer. As the country is coming out of lockdown with the road map announced last month, some who can leave their house will be pleased to spend more time in fresh air, others may be a bit wary, after all home has been a security blanket for most. MedicAlert has been invaluable in helping members gain independence, especially for those in remission from cancer. MedicAlert stores their crucial medical details in case of an emergency including, for example, whether a cancer survivor can only have irradiated blood products, is vital for survival. Knowing this service is protecting them, 24/7, provides the peace of mind to remain active and independent, supporting both physical and mental health. Living well with blood cancer is about looking after your mental and physical wellbeing and trying to achieve a good balance between the two. It is also about recognising when you are not ok and not punishing yourself for your bad days. Learn more about how MedicAlert can help here: FIND OUT MORE References and further reading https://www.leukaemiacare.org.uk/support-and-information/latest-from-leukaemia-care/blog/benefits-of-exercise/ http://craftcourses.com http://www.classbento.co.uk https://www.mentalhealth.org.uk/news/cancer-patients-left-cope-mental-health-problems-alone https://bloodcancer.org.uk/support-for-you/coronavirus-covid-19/ Article Categories Medical Conditions
