There’s a lot of support you – and those close to you – might need if you’ve been diagnosed with a blood cancer. 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. We’ve gathered all of that information here for you.
- Blood cancer
- Childhood leukaemia
- Acute lymphoblastic leukaemia (ALL)
- Acute myeloid leukaemia (AML)
- Acute promyelocytic leukaemia (APL)
- Chronic lymphocytic leukaemia (CLL)
- Chronic myeloid leukaemia (CML)
- Chronic myelomonocytic leukaemia (CMML)
- Hairy cell leukaemia (HCL)
- Large granular lymphocytic leukaemia (LGLL)
- Plasma cell leukaemia (PCL)
- T-cell acute lymphoblastic leukaemia (T-ALL)
- Other conditions related to blood cancer
Living with and beyond blood cancer
Living with and beyond blood cancer
Watching out for changes
You may wonder whether there are any specific signs or symptoms you should look out for. Because blood cancer and its treatments can have an impact on your immune system, it might not be working properly so a minor infection could become more serious if it’s not checked out.
It’s always a good idea to contact your healthcare team if you have any symptoms after your treatment or any changes in your general health. There’s lots of possible symptoms you could see – everyone’s experience will be different depending on which part of their body has been affected.
If you find any new swellings, make sure you contact your healthcare team. If you’re in any doubt you should seek medical advice straight away.
Shingles is the infection of a nerve and the skin around it. It can affect you if you’ve had chickenpox, even if you had it a long time ago, as it’s caused by the same virus, which can lie dormant in your body for years. You’re more likely to get shingles if your immune system isn’t working well – for example, if you have blood cancer.
Shingles has some quite obvious symptoms. If you think you have it, let your GP or specialist know as quickly as possible (within 24 hours of the rash appearing is best). If it’s treated early, the symptoms won’t be as bad.
- a rash – blisters filled with fluid, which burst and form sores that then crust over (the rash is usually confined to one side of the body),
- an itching, tingling or burning feeling, and
- pain where the rash is.
You can’t catch shingles from someone who has it, but you can catch chickenpox from someone with an open shingles sore, if you haven’t had chickenpox already.
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.
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.
Although staying active may help, there’s no evidence that any particular exercise programme can improve your condition or how you respond to treatment.
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 separate in the fridge.
Our Eating well with neutropenia booklet has more advice on avoiding infections from food.
Complementary and alternative therapies
It's important that you know the difference between alternative therapies, which are offered in place of medical treatment, and complementary therapies, which are used alongside standard treatment.
Extensive research has shown no evidence that any alternative therapy has any benefit in treating of any form of cancer. We don’t recommend that you use any alternative therapy in place of proven medical care. Always let your healthcare team know about any complementary treatments you’re using or thinking of using.
They may advise you to avoid certain therapies because of specific risks or the treatments you’re receiving. In other cases, they may say a therapy is OK as long as you take specific precautions.
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.
Your healthcare team should consider your emotional, as well as physical, needs – this is called a holistic needs assessment. You’ll have one a few times throughout the course of your treatment and beyond, as your emotional needs might change.
Practical support: blood cancer
Your work, education and domestic arrangements
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.
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 makes 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.
If you’re a parent or a carer, you might need support during your treatment. You might have unplanned stays in hospital because of infection for example – it’s helpful to have plans in place just in case.
Cancer and the law
People with cancer, or any other serious disease, are covered by a law called the Equality Act – for the purposes of the act, cancer is considered a disability. This means that employers and places of study are required by law to make reasonable adjustments for ‘people with disabilities’ and can’t discriminate against you.
An example of a reasonable adjustment would be if you need time off to go to hospital for treatment.
Getting to hospital
If you’re being treated as an outpatient (not staying in overnight) you might need to go to the hospital a lot. If you find this hard because of transport or any other reason, you can ask your consultant if you can have any of your treatment nearer to where you live. It might not always be possible but sometimes it is – it depends on the healthcare facilities close to your home and the type of treatment you’re having.
Your finances might be the last thing on your mind if you’ve just been diagnosed with cancer, but there are lots of places you can get help and advice.
Your hospital will normally have medical social workers or welfare rights (benefits) advisors who can advise on which benefits you might be able to receive. These might be especially useful if you’re on a low income or are unemployed. If you’re worried you can ask to speak with an advisor as soon as possible after your diagnosis.
If you normally pay for your prescriptions but are being treated for cancer (including any side effects) you can apply for a medical exemption certificate for any drugs you need for these reasons. Application forms are available from your GP surgery or hospital clinic.
Finding out more
After you've been diagnosed, it’s worth taking some time to think about what information you want to know, when and how.
For some people, this is a way to have some control over what’s happening.
- Let your consultant and clinical nurse specialist know how much information you’d like, and in what form. You can always ask for more information later.
- Write down any questions you have and keep them handy for when you see your consultant or key worker. If they can’t answer your questions, they’ll be able to tell you who to speak to.
- You might prefer to ask your clinical nurse specialist questions rather than your consultant, but do whatever works for you.
- Most patients say they find it useful taking someone with them to consultations.
If you’d find it helpful, you could ask them to take notes while you listen. You can choose who to take; it doesn’t have to be a family member.
- If you’re staying in hospital it might be harder to have someone with you when you speak to your consultant. It might be useful to ask in advance what time the consultant is likely to speak to you, so you can try to arrange for someone to be with you at that time.
- When you’re in the clinic or staying in the hospital you may be looked after by a more junior doctor, a senior house officer or a registrar. These doctors have left medical school but are still training to be consultants. They’ll be able to answer many of your questions, but if they can’t then they’ll ask the consultant. All doctors in training are supervised closely by more senior colleagues.
- Some people find that joining a patient support group is helpful. It may be easier to talk to someone outside of your family about your situation and being able to share similar experiences might also help you.
Telling others about blood cancer
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.
Telling children and teenagers
Talking to children and teenagers about your cancer diagnosis can be difficult. There are lots of organisations that are able to support you and offer you advice about how to explain cancer to children of different ages.
Telling your GP
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.
Cancer and work
Consider telling someone at work 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.
Cancer information and support groups
Many people affected by blood cancer find it useful to call on the expert information, advice and support offered by a variety of organisations, including ourselves. Here are some we recommend.
We offer patient information online and in free printed booklets, and have an online community you may like to join.
We can help with practical and emotional support and signpost you to other available services.
- 0808 2080 888
Offers patient information, a telephone advice and information line, an online discussion forum and support groups.
Macmillan Cancer Support
Offers practical, medical, financial and emotional support.
- 0808 808 0000
CancerHelp UK (Cancer Research UK’s patient support service)
Offers information about different conditions, current research and practical support.
- 0808 800 4040
Offers patient information, a 24-hour care line and support groups for people affected by leukaemia, lymphoma, myeloma, myelodysplastic syndromes, myeloproliferative neoplasms and aplastic anaemia.
- 01905 755 977 (general enquiries) or 08088 010 444 (Care Line)
African Caribbean Leukaemia Trust (ACLT)
The ACLT aims to increase the number of black, mixed race and ethnic minority people on the UK Bone Marrow Register by raising awareness and running donor recruitment drives.
Provides emotional support and information to anyone with lymphatic cancer and their families, carers and friends.
- 0808 808 5555
CML Support Group
An online patient support group for CML patients, their families and carers.
CLL Support Association
Provides information and support for patients with CLL (and related conditions) and their family and friends. They also send regular newsletters and hold patient meetings for their members. You can connect with other patients on CLLSA’s online community.
- 0800 977 4396 (helpline)
- healthunlocked.com/cllsupport (online community)
Teenage Cancer Trust
Offers a range of information, advice and practical support to younger patients.
Runs the UK’s largest stem cell register, matching donors to patients with leukaemia and other blood related disorders who need a stem cell transplant.
- 0303 303 0303
Maggie’s Cancer Caring Centres
Centres across the UK, run by specialist staff who provide information, benefits advice and psychological support.
Marie Curie Cancer Care
Nine hospices throughout the UK and offers end of life support to patients in their own homes, free of charge.
Provides an identification system for individuals with hidden medical conditions and allergies, in the form of emblems you wear on your body and necklaces or wrist bands.
Provides an information service on all aspects of cancer, and practical and emotional support for cancer patients and their families living in Wales.
- 0808 808 1010
Citizens Advice Bureau (CAB)
Offers advice on benefits and help with filling out benefits forms.
- 03444 111 444 (England) or 0344 477 2020 (Wales)
Department for Work & Pensions (DWP)
Responsible for social security benefits. Provides information and advice about financial support, rights and employment.
Macmillan Cancer Support Grants
A Macmillan grant is a one-off payment for adults, young people or children with cancer, to cover a wide range of practical needs.
Macmillan Cancer Support
Provides information about what to consider when looking for travel insurance, along with recommendations from the Macmillan online community.
- 0808 808 0000
Association of British Insurers (ABI)
Provides information about getting travel insurance and contact details for specialist travel companies.
- 0207 600 3333
British Insurance Broker’s Association (BIBA)
Offers advice on finding an appropriate BIBA-registered insurance broker.