Living with low-grade NHL

Updated 10 Aug 2017

There’s a lot of support that you – and those close to you – might need if you’ve been diagnosed with low-grade NHL. 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.

> You'll find information below and in our Living with blood cancer section

Looking after yourself emotionally

Being told that you have cancer can be very upsetting and will almost certainly bring many different emotions. If you were diagnosed by chance, it can come as even more of a shock. Friends and family often offer a great deal of support, but it can be harder for them to understand the long-term emotional impact that you might experience.

Your healthcare team look at 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. You may be offered referrals to counselling and the opportunity to speak to the complementary therapy team, if this is something you think you’d find useful.

Looking after yourself physically

If you've been diagnosed with low-grade NHL, there can be a physical impact on your day-to-day life.

Changes in your condition

When you’ve completed your treatment you may wonder whether there are any specific signs or symptoms you should look out for. It’s likely that your immune system isn’t working properly, which means that 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 are 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.

Symptoms of infection might not be very clear to you. Your illness might make symptoms less obvious, especially if you’re taking paracetamol-based medicines. If you’re in any doubt you should seek medical advice straight away.

Signs of infection

  • coughing or sore throat
  • raised temperature
  • confusion or agitated behaviour, especially if this comes on suddenly
  • quickly becoming more ill
  • fast heartbeat and breathing
  • difficulty in passing urine or not producing urine
  • abruptly increasing pain
  • shivering/shaking and feeling cold

Even if you’re not sure if your symptoms are significant, it’s good to talk to your healthcare team. They’re experts in their field and will be able to decide if any of the symptoms you’re having need checking out.

Keeping active

You might feel tired a lot (fatigue). This might be caused by your NHL 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 how you feel, there’s no evidence that any particular exercise programme can improve your condition or how you respond to treatment.

Diet

Similarly, 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 handling food safely and cooking things thoroughly.

A diet for people with a weakened immune system is known as a neutropenic diet. Your healthcare team will be able to give you more information about this diet.

> Download or order our 'Eating well with neutropenia' booklet for more advice about avoiding infection from food

Shingles

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 NHL.

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.

Symptoms include:

  • a rash – blisters filled with fluid which burst and form sores which then crust over (the rash is usually confined to one side of the body),
  • pain where the rash is, and
  • an itching, tingling or burning feeling.

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.

Vaccination

It’s a good idea for all low-grade NHL patients to have the flu vaccine each year – your GP may contact you about this, but if they don’t then you can request the vaccine yourself. Your consultant can discuss with you which vaccinations you should have, if relevant.

Blood transfusion

If you’ve been treated with certain types of drugs, it might affect how well your immune system is working. If this is the case, you might need a blood transfusion. It’s important that if you have a transfusion that the blood you receive is irradiated. This process will kill any unwanted white blood cells in the donated blood you’ll receive, and will protect you against any complications. If this applies to you then your healthcare team will discuss this with you.

Watch Dr Robert Marcus, Consultant Haematologist, King's College Hospital, London, talk about everyday life for patients with low-grade NHL.

Where to get help and support

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.

Bloodwise

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.

Macmillan Cancer Support

Offers practical, medical, financial and emotional support.

Lymphoma Association

Provides emotional support and information to anyone with lymphatic cancer and their families, carers and friends.

CancerHelp UK (Cancer Research UK’s patient support service)

Offers information about different conditions, current research and practical support.

Leukaemia Care

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.

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.

Anthony Nolan

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.

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.

MedicAlert Foundation

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.

Financial advice

 

Citizens Advice Bureau (CAB)

Offers advice on benefits and help with filling out benefits forms.

Department for Work & Pensions (DWP)

Responsible for social security benefits. Provides information and advice about financial support, rights and employment.

Travel insurance

 

Macmillan Cancer Support

Provides information about what to consider when looking for travel insurance, along with recommendations from the Macmillan online community.

Association of British Insurers (ABI)

Provides information about getting travel insurance and contact details for specialist travel companies.

British Insurance Broker’s Association (BIBA)

Offers advice on finding an appropriate BIBA-registered insurance broker.

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