A diagnosis of leukaemia can seemingly bring your world crashing down around you. Things can move so fast after diagnosis that you just don’t have time to reflect on anything, especially for acute patients.
Yet leukaemia can cause changes to every aspect of your life, and patients who have spoken to us have demonstrated the many things that you need to think about after that moment. You might come to terms with the diagnosis, only to be hit by a second wave of worry; what about the kids? The dog? The house?
Macmillan released a report in 2012 entitled “Cancer’s Hidden Price Tag”, highlighting the financial problems faced by those diagnosed and their families. It’s not just loss of earnings, there may be increased expenditure too. In this article, we have brought together a checklist of things to think about after a diagnosis. By working through it, it should help to make home life go as smoothly as possible during your leukaemia journey.
Tell your employer
Telling your employer can seem intimidating to start with but will be a weight off your shoulders once done. Your employers are likely to be understanding, although they might not know what leukaemia is. There is a misconception that leukaemia mainly affects children. Don’t feel under pressure to explain everything all in one go; you could start by saying that you have a type of blood cancer, as most people will understand the impact that a cancer diagnosis can have. You can then explain the details in future phone calls when you may be feeling better, both physically and mentally, compared to the moments after diagnosis.
A cancer diagnosis is a protected characteristic under the Equality Act 2010, meaning you are protected from discrimination at work, as well as other places like shops and restaurants. This means you are largely protected from losing your job while you are ill. However, the law does not apply unless the employer is aware of your illness. Letting work know that you are ill also means you can avoid unexpected phone calls and feel under less pressure to return to work.
Once you have told your employer, you are also then entitled to sick pay. The level depends on the company you work for and how long you have worked there. A common scenario is that you will get full pay for a certain length of time, if you have worked at the same place for more than six months. The amount of time you get full pay for is likely to increase with length of service too. Once your full pay period expires, or if you are not entitled to be paid, you can also get statutory sick pay from the government. Check your contract of employment for full details.
If you feel like you need to give up work, this is something you should consider carefully, giving yourself plenty of time to decide. You may also be entitled to some benefits if you are too ill to work; you should seek advice from Leukaemia Care, Citizens Advice or Macmillan to get information on your entitlement for your specific situation.
For more information on all aspects of employment rights with leukaemia, please see our Know Your Rights Toolkits here.
If you have younger children, you will want to consider who will look after them during hospital stays, appointments and times when you are vulnerable to infection, such as after a stem cell transplant. Have a think about whether you can do this through informal care arrangements or whether you may need something more formal in place.
Informally, your partner (if applicable), family members or friends are likely to be the first place you turn to when an illness like leukaemia is diagnosed. It can feel difficult to reach out for help but don’t feel guilty; close friends and family are likely to be unsure of how they can help but very willing, so asking for something specific like this helps. Your partner, whether married or not, could ask for flexible working arrangements or compassionate leave from their employer. Other family members may be able to do the same. For older family members, such as grandparents, have a chat about what they feel they can contribute versus what you need, so they don’t feel overwhelmed. They will wish to help but children can be tiring. Overall, people will be more than willing to help.
If you are ill for a longer length of time, or you don’t feel your informal network of people can help, you might want to consider asking for help from social services. This might seem like a scary prospect, but they are there to help everyone with the welfare of children. Social Services do not just intervene when children are in danger, they can be called upon by anyone in a time of crisis that could affect children. They can help you assess your needs and design a solution that works for everyone. This does not necessarily mean the children will be taken to stay elsewhere, although this could be an option; they could just coordinate your family and friends for you, working out who can look after the children and for how long.
Even if you feel you can look after your children yourself, or your partner can, it’s important to make sure you get a break. The Carer’s Trust can provide respite for anyone caring for others, whether that be a carer or someone who is ill but also has responsibility for children.
As with childcare above, caring for a pet can be difficult after your diagnosis if you are away from home a lot or if you need to avoid infections. Again, family and friends will be willing to help but they may not be familiar with looking after a pet or unable to help due to allergies or pets of their own. There are charities that offer pet fostering services, usually short term. One example is the Cinnamon Trust. Your vet may be able to inform you about local charities offering a similar service.
Cooking a meal when you have leukaemia can be difficult for several reasons; you may not feel physically able to cook, you may have to follow a restricted diet, or you may not have the appetite for food due to the side effects of treatments. Although not often the first thing to come to mind this could be an effective way for friends and family to help you. You could ask those living close to you to bulk cook a meal and freeze it in portions. They could do this while you are in hospital or at an appointment, so you can come straight home to a fully stocked kitchen. If they don’t have access to your house, they could leave things on the doorstep, acknowledging your need for help but also the fact you might not feel up to socialising too.
At certain stages of your leukaemia journey, you might not feel like driving or be able to get around yourself. Taking you to and from hospital appointments is often a simple way that friends and family can help. If you have not got this support and cannot use public transport, there may be a volunteer transport service in your local area; speak to your local council for more details.
The cost of attending appointments can also stack up. Often hospitals give free or discounted parking to cancer patients, although the policy varies depending on your location in the UK. This scheme is also not well advertised, so do ask at your next appointment. The hospital can also refund the cost of reasonable travel, such as buses, taxis or petrol, to patients in receipt of certain benefits or those who can show they have a low income.
Symptoms of leukaemia vary from person to person, but you are likely to be spending more time at home and need to keep warm to avoid infections. This may mean you need to spend more on fuel for heating or lighting, and this is likely to come at a time where you income drops. Help is available; for example, Macmillan have a fund with Npower that means cancer patients bills are capped at 10% of their income during treatment. Macmillan can also give out grants directly for this kind of expense if you have low income or savings.
As a cancer patient, you become eligible for other healthcare costs that you may be used to paying for. For example, you can get free prescriptions if you are in England (they are free for everyone in Wales, Scotland and Northern Ireland). You might also qualify for free eye tests and dental treatments, especially if your leukaemia means you cannot work and are on a low income or certain benefits.
Grants for special circumstances/treats
Even with all the above sorted, leukaemia patients are all too often left without the income for expenses often taken for granted, like new clothes, short breaks or babysitting to go out. Grants may be available to help if you feel you are struggling to pay for an essential, like food or bills, or would like a treat to help you recover. Macmillan grants can provide for a range of things, depending on your income and savings, giving around £300 on average.
Turn2Us is a site that keeps a directory of all grant giving organisations and you can search locally for organisations, such as churches, that provide funds in your area. Importantly, those who are caring for you, or your children if applicable, while you are ill may also be entitled to this kind of help, so they can get a well-deserved break too.
Useful organisations and links
- The Community Transport Association: https://ctauk.org/
- Cinnamon Trust: http://www.cinnamon.org.uk/cinnamon-trust/
- Turn2US: https://grants-search.turn2us.org.uk/
- Macmillan advice
- Energy bill advice: https://www.macmillan.org.uk/about-us/working-with-us/corporate-partners/keep-warm-without-the-worry.html
- Other healthcare: https://www.macmillan.org.uk/information-and-support/bowel-cancer/colon/organising/benefits-and-financial-support/help-with-health-costs
- Childcare: https://www.macmillan.org.uk/information-and-support/organising/practical-preparation-for-treatment/childcare/help-getting-childcare.html
- Grants: https://www.macmillan.org.uk/information-and-support/organising/benefits-and-financial-support/benefits-and-your-rights/macmillan-grants.html
Please get in touch with our Advocacy Caseworker for more information on any practical or financial issues arising from your leukaemia diagnosis by emailing email@example.com or phoning 01905 755 977. We would also welcome recommendations of organisations that can help with these practical issues so we may share this information with others.