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.
Watch Wendy talk about her experience with low-grade NHL:
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
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.
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.
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 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.
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.
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.
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.
We offer patient information online and in free printed booklets, and have an online community you may like to join.