I’ve just been diagnosed with blood cancer or leukaemia

You may have just learnt you have leukaemia and be wondering about all the things you need to consider following such a life-changing diagnosis. Don't worry, we're here to support you.

You might be feeling like your world has been completely turned upside down and wondering about all the things you need to consider following such a life-changing diagnosis. There might be lots of questions you don’t know the answers to so we’ve put together a simple checklist that is applicable to adults diagnosed with leukaemia, which can be found in the dropdown sections below. The checklist is designed to help you identify and prioritise the things you may need to do after a diagnosis.  It can be helpful to share it with your family and friends and use it to delegate some tasks. 

If you have a child diagnosed with leukaemia, we recommend visiting the Children’s Cancer and Leukaemia Group who have resources on looking after your child with leukaemia, as well as siblings and grandparents.

Young Lives vs Cancer have a specific section for parents  as well as resources for young people themselves.

Being diagnosed with leukaemia during COVID-19

We know being diagnosed with leukaemia during the COVID-19 pandemic means an extra load of information to take in. Here are the key points you need to know about COVID-19 if you have been diagnosed recently:

  • Speak to your haematologist or clinical nurse specialist about the COVID-19 vaccines and when you had them.
    • We know that several people with leukaemia, especially those on treatment when they were vaccinated, may not respond to the COVID vaccines. You may need to repeat some doses, or have extra doses to compensate.
    • If you still need to have another dose of the COVID vaccine (e.g. you are due a booster), please check what the right time would be to have it (e.g. do you need to avoid having it when you are on treatment/about to start treatment?)
    • If you have had or are about to have a transplant, you normally have to repeat your childhood vaccines. This might also include repeating your COVID vaccines.
  • Some leukaemia patients remain at risk of severe illness from COVID-19, mainly those who did not respond well to vaccines. The government have made these people a priority for accessing treatment from COVID-19. 
    • Not sure if this includes you? Speak to your haematologist or CNS. 
    • Many people will have got a letter to tell them they are included in this group. However, people diagnosed after the 15th of November may not have been notified of this. If you have been diagnosed since this date and test positive for COVID-19, please make sure you contact your GP or 111 as soon as possible and let them know that you think your are eligible for treatment. 

For all our COVID-19 information, please see the COVID-19 information hub here: https://www.leukaemiacare.org.uk/support-and-information/information-about-blood-cancer/covid-19-information/ 

Telling people about your diagnosis

Letting people know about your diagnosis is key to getting support.  If you have been diagnosed with an acute leukaemia, you will almost certainly have been admitted immediately for further tests and treatment.

You may want to tell people yourself, or you may be happy delegating it to a family member or friend.  You might want to speak to people in person or on the phone, or you may wish to let people know on social media, or on a WhatsApp group.

People will have questions and you might be worried about not having all the answers.  You can signpost people to trusted resources online – Leukaemia Care has information on all leukaemia’s including rarer types.  This can be downloaded from our website or hardcopies ordered online.

Telling your children can be worrying.  Macmillan publish a booklet called “Talking to children and teenagers when an adult has cancer” which offers lots of helpful tips.

Checklist of people you may want to tell

  • Your family
  • Your children
  • Your friends
  • Your employer
  • Your child’s/children’s school
  • Your voluntary work
  • Your education provider if you are undertaking training or study
  • Groups you are involved with such as sports teams and clubs
  • Your church
  • Anyone providing you with healthcare such as your dentist, optician, physiotherapist, complementary therapist, counsellor etc.

Looking after your mental health

A blood cancer diagnosis can leave you feeling anxious and overwhelmed.  It is important to consider your emotional needs as well as your physical ones.

Talking to someone who understands the impact of a diagnosis can relieve some of the anxiety and uncertainty.

Family and friends may struggle to understand the emotional impact of a blood cancer diagnosis especially if you have been diagnosed with a chronic leukaemia and may be on watch and wait, or active monitoring.

You can call our helpline on 08088 010 444 and speak with a nurse who will listen and answer any questions you have about your blood cancer and its treatment.

It can also be helpful to talk to other people with a similar diagnosis.  We can match you with a buddy for regular support by phone or email who will listen and share their experience alongside practical help in coping with your diagnosis.

If you prefer a group setting, our online and in person support groups provide a welcoming, non-judgemental community keen to support you.

We also provide access to six sessions of counselling for anyone needing further help with the impact of a diagnosis.

Just call our helpline on 08088 010 444 or email support@leukaemiacare.org.uk to access any of these services. You can also apply for counselling via our website here.

These services are also open to your family and friends who may benefit from talking with others coping with the diagnosis of a loved one.

Coping with money worries

Depending on your diagnosis, you may not be able to work or only be able to work part-time.  If you have a partner, they may also have to take time off to visit you in hospital or to care for you at home. It is important that you understand the impact on your finances and make a plan as early as possible.

Read our toolkits to find out more about what benefits you may be entitled to.  If you already receive benefits, you should do a review to see if you are entitled to different benefits or if you are no longer entitled to receive some for example, because you are no longer able to look for work because of your diagnosis.

Welfare Benefits: part 1 covers benefits relating to replacing employment income, as well as help with housing costs.

Welfare benefits: part 2 covers benefits for those who are disabled or bereaved.

Welfare Benefits: part 3 covers Universal Credit and claiming benefits under special circumstances such as when you are self-employed or have received a terminal diagnosis.

Help with housing costs.

Home adaptations and living independently.

Accessing help if you are at risk of homelessness – what are my rights?

Our Welfare Advisor can help you find out what financial support is available to you and help with any applications for benefits or grants.

Leukaemia Care provides a Financial Hardship grant of £200 to anyone diagnosed with a leukaemia, myelodysplastic syndrome (MDS) or myeloproliferative neoplasm (MPN), chronic lymphocytic patients on “watch and wait”, or chronic myeloid leukaemia (CML) patients undergoing treatment-free remission.

Just call our helpline on 08088 010 444 or email support@leukaemiacare.org.uk to access any of these services.  You can also apply for the grant via our website here.

Other things to check:

  • Your employer’s sick pay policy – do they offer enhanced sick pay beyond statutory sick pay?
  • Your employment benefits package – this may include a variety of benefits.
  • Insurances you have both through work, that came with your mortgage or that you purchased separately. These could be income protection insurance, critical illness cover, short-term income protection insurance (STIP) and payment protection insurance (PPI).
  • The Money Advice Service (soon to be Money Helper) provides free information and advice on all financial matters and has a specific section on insurance.
  • Entitlement to free prescriptions
  • Free parking at the hospital

Talking to your employer

As someone with a blood cancer, by law in the UK, you are considered to have a disability.  This means that as an employee, you are protected from discrimination at work because of your cancer.

Our toolkits provide you with clear information, advice and signposting on your rights at work and what to do if you think you are being discriminated against, either at work or at any other organisation because of your leukaemia diagnosis.

We have four toolkits that cover your rights at work.  If you are worried, or experiencing any issues, call our helpline on 08088 010 444 or email support@leukaemiacare.org.uk

Discrimination and cancer: The Equality Act (outdated re 24-hour helpline, charity no etc).

We have three toolkits that cover employment:

Employment rights 1: Being/Becoming employed

Employment rights 2: Leaving work

Employment rights 3: Self-employment

Your employer may not have met anyone with a blood cancer and understand the impact this will have on your work.  Macmillan have information and resources specifically for employers to help them understand their legal obligations to you and how to support you with reasonable adjustments, you can view here.

Sorting out childcare

If you are diagnosed with an acute leukaemia, you will most likely have to be admitted to hospital immediately to start treatment.  Even if you are diagnosed with a chronic leukaemia, you may have to be admitted to hospital initially for tests, monitoring and the start of treatment.

In either situation, you will need help with childcare.

Family and friends can step in to provide short-term and long-term support.

Social services can assess your needs and put in place a package of support.  Your local Family Information Service can provide you with details of local childcare services and other sources of support.  If you are a single parent and have little or no support because you are new to an area or other circumstances, then social services will consider all possible options for looking after your child/children if you must go into hospital.

If employed, both you and your partner can speak with your employer about flexible working during treatment.  Parents also have the right to request dependents leave – this is generally unpaid leave to allow you to quickly put in place new care arrangements when your existing ones are unsuitable or have fallen through.

Charities such as Home-Start have trained and vetted volunteers who can provide support in your home.  Visit their website to find your local Home-Start.

Gingerbread is a charity providing information and advice for single parents. Call their helpline on 0808 802 0925 for advice or visit their website.

What someone looking after your child may need to know

  • Contact details for you and your emergency contact
  • Contact details for your child’s GP
  • All current medication including inhalers and repeat prescription lists
  • Details of any allergies and medical alert-ID bracelets
  • Details of any food intolerances or special diets
  • Contact details for their class teacher and school
  • Any passwords at nurseries to allow them to pick up your child
  • Any rules you have around chores, homework, bedtime, screen time, snacks etc.
  • Details of any after school clubs they attend
  • Details of when they have to wear uniform and which days to bring in/wear PE kit or swimming costume/trunks
  • If they have school lunches or bring a packed lunch – how to order school lunches
  • Access to the online parent portal that shares school newsletters, processes payments for trips etc.

Support for you if you are an unpaid carer

If you look after someone unpaid and are diagnosed with a blood cancer you may need more help with looking after them.  If you need to go into hospital, or are very unwell, you may no longer be able to look after someone.  You must let your healthcare team know immediately so they can help you put support in place or call that person’s GP or social worker if they have one.

Our toolkit on Carers Rights explains what support you are legally entitled to and how you can get it.

The Carers Trust has information on what to do when you must go into hospital as well as lots of information to support you as an unpaid carer, you can view here.

What a care provider will need to know:

  • Any existing care or support provided from any source
  • Contact details for their next of kin, GP and social worker if applicable
  • Details of any regular appointments with the GP, mental health specialist, hospital specialist, physiotherapist etc.
  • All current medication including inhalers and contraceptive pill and repeat prescription lists
  • Details of any allergies and medical alert-ID bracelets
  • Any dietary restrictions
  • What help they need with personal care such as washing, getting dressed, using the toilet etc
  • Their social calendar if they need help with this – people they meet, groups they attend etc.

If you need help with accessing support, call our helpline on 08088 010 444 or email support@leukaemiacare.org.uk

Looking after pets

If you need to go into hospital urgently and have a pet that needs caring for, let your healthcare team know immediately.

Check your pet insurance. Some policies cover boarding fees if you are hospitalised although the amount is usually capped.

People who could help even in the short-term while longer-term arrangements are put in place:

Family, friends and neighbours – potentially colleagues at work.

Local vets may run or know of a local pet fostering scheme where volunteers look after your pet either in your home or their own.  Animal shelters may also be able to look after your pet.

Charities such as the Cinnamon Trust or local branches of the RSPCA may be able to help with daily tasks such as dog walking or provide short-term fostering with a volunteer.

Local boarding services such as kennels and catteries which can be expensive.

Pet sitting services such as Petpals or pet sitters recommended by your vet.  Check the National Association of Pet Sitters and Dog Walkers for people in your area.

What someone caring for your pet will need to know:

  • What food they eat especially if they have a special diet and how often
  • What bedding and litter they use (especially for small animals)
  • Contact details for their vet
  • Any medication they are taking, or medical conditions they have that need monitoring
  • Their daily routine
  • Their likes and dislikes especially anything that causes them anxiety and how to handle it
  • How you reward them for good behaviour
  • Their favourite toys

What you need for a stay in hospital

Depending on your diagnosis, your may have a short, long or no hospital stay at all.  It maybe planned or as in the case of many acute leukaemia’s, you may be admitted immediately for further assessment and treatment.  You can use this checklist yourself or give it to someone else to gather the things you need.

  • Contact details for your next of kin, GP, social worker or carer if you have one
  • All current medication including inhalers and contraceptive pill and repeat prescription lists
  • Details of any allergies and medical alert-ID bracelets
  • Toiletries (hairbrush, deodorant, body wash, shampoo, moisturiser, razor, shaving foam)
  • Sanitary items (sanitary towels, tampons, incontinence pads)
  • Toothbrush and toothpaste and/or denture cleaner/ mouthguard if you use one
  • Towels (hand and bath)
  • Glasses/contact lens plus solution to clean lenses
  • Hearing aid if you use one
  • Walking stick or aid/orthopaedic shoes if you use them
  • Two changes of nightwear plus a dressing gown
  • Daytime clothing that’s loose and comfortable
  • Socks and slippers
  • Spare underwear
  • Plastic bag to put dirty/worn clothes in
  • Your own pillow
  • Mobile phone and charger
  • Laptop/tablet and charger
  • Headphones
  • Books and/or magazines
  • Sleep mask and ear plugs
  • Tissues
  • Credit or debit card plus change for vending machines and the hospital shop
  • Something that brings you comfort – a photo, blanket, scarf, favourite jumper – even a stuffed toy

Looking after your home while you are in hospital

What you must do may depend on where you live and with whom.  You may own or rent your home.  You may rent privately or from a housing association. You may be living in a shared house, or in temporary accommodation.  You may live in accommodation tied to your employment which you may be in danger of losing if you can no longer work.

You may live alone, with family or friends.  You may be living in a shared house and not really know anyone who lives there.

Consider choosing someone you trust and ask them to help with some or all the tasks on the list.

  • Give your trusted person a key to your home or room
  • If you live in a shared house, you may wish to ask your trusted person to remove anything valuable for safe-keeping
  • Let your neighbours know who your trusted person is and how often they will be coming round – ask your trusted person if you can share their contact details with them
  • Let your landlord know and how they can contact you if the property is going to be unoccupied
  • Check with your insurance company to see how cover is affected if your property or room is unoccupied
  • Cancel any food deliveries
  • Cancel or re-direct any other deliveries to your trusted person
  • Cancel or suspend any subscriptions
  • Reschedule any external maintenance such as window cleaning or ask your trusted person to be present
  • Ask them to empty the bins and remove any perishable food from the fridge, cupboards and kitchen worktops to prevent rotting food attracting pests
  • Make sure the bins are put out for collection and once emptied, returned to their usual position
  • Make sure all taps are turned off – you may wish to turn the water off at the mains
  • Ask them to water any plants indoors or in the garden in hot weather
  • Collect any post and deliver to you in hospital or, sort and prioritise bills and urgent matters for your attention.
  • If you know who your local Community Support Officer is, you could tell them your home will be unoccupied and share the contact details of your trusted person
  • Ask them to turn on a light in the hall or landing periodically if they are not on a timer
  • Ask them to make sure the outside looks tidy – remove any rubbish thrown into the garden, any leaflets sticking out of the letterbox, any gates are locked and if they can mow the lawn, this will keep the property looking occupied

Other life maintenance

  • Make sure any essential renewals are not missed such as home insurance, MOT, car tax and car insurance.
  • Declare your car off road if you are not using it and it is kept on a driveway, garage or private land – once you have a SORN (Statutory Off Road Notification), you will not need to tax or insure your car.
  • Update your will if necessary especially if anything has changed such as moving in with someone, buying a house, getting married or having a child.
  • If you do not have a will, then Leukaemia Care offer a free wills service, found here.
  • If you want to plan for your future treatment and care and ensure your wishes are respected, you may wish to read our toolkits which describe what you need to do:

Planning ahead for your treatment and care – lasting power of attorney

Planning ahead for your treatment and care: Advance Statements, Advance Decisions and DNAR

There are many ways to manage and cope with your emotions. Sharing your thoughts and feelings with loved ones, your partner or your GP can help. You can also read our emotional impact of a blood cancer booklet which talks you through some of the emotional responses you may experience as you adjust to life following a diagnosis of blood cancer.

If you need to talk to somebody impartial about your blood cancer, our helpline is available Monday – Friday 9am – 5pm and Thursday and Friday evenings 7pm – 10pm. The number to call is 08088 010 444 and is free from landlines and most mobile networks.