Living with HL

Updated 10 Aug 2017

There’s a lot of support you – and those close to you – might need if you’ve been diagnosed with Hodgkin lymphoma (HL). 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

> Read about the experiences of other people who are going through – or have been through – the same thing

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

Changes in your condition

When you’ve finished your treatment it’s important to contact your healthcare team at the hospital straight away if you notice any new symptoms, don’t wait for your next check-up. Symptoms to watch out for are:

  • new swellings
  • fever
  • sweats
  • unexplained weight loss
  • any changes to your general health.

Keeping active

You might feel tired a lot (fatigue). This might be caused by your Hodgkin lymphoma 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.

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 a 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.

> Download or order our Eating well with neutropenia booklet for more advice on avoiding infections from food

Smoking

To reduce some of the risk of long-term side effects caused by treatment, it’s essential that you give up smoking. Smoking is especially harmful to those who’ve previously had chemotherapy and it’ll increase your risk of developing a new, second cancer or lung problems in the future.

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 Hodgkin lymphoma.

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, normally on one side of your body
  • an itching, tingling or burning feeling
  • pain where the rash is
  • blisters filled with fluid which burst and form sores which then crust over.

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.

Sex and pregnancy

If you’re a woman receiving chemotherapy, it’s not advisable to become pregnant. Take every precaution possible to prevent this. Once in remission it’s wise to talk to your doctor about planning to have a child.

Men should also use a condom during treatment because the effects of chemotherapy on sperm are not fully understood.

Both men and women should use condoms while receiving chemotherapy (and for a week after completion) because chemotherapy drugs can be present in all bodily fluids.

Watch Dr Chris Hatton, Consultant Haematologist at Oxford Radcliffe Hospitals NHS Trust, talk about everyday life for people with HL

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.

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

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

Lymphoma Association

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

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)

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 throughout the UK, run by specialist staff who provide information, benefits advice and psychological support.

Marie Curie Cancer Care

Runs 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 wristbands.

Tenovus (Wales)

Provides an information service on all aspects of cancer, and practical and emotional support for cancer patients and their families living in Wales.

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 public services including 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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