Living with lymphoma, the practical stuff

Living with lymphoma and having treatment can be a stressful time with many different challenges. You may be wondering what support is available for people with lymphoma. This page will provide some practical advice and information on support services that may be available to you. These include assistance with transport, financial support, mental health support and much more.

On this page:

Practical Everyday

Finding out you or a loved one has lymphoma is a big shock and will change many things about how you live. Knowing what you need at the beginning can help you plan ahead to make sure you get the right support when you need it most.

How lymphoma impacts your life will depend on many things, such as:

  • what subtype of lymphoma you have
  • whether you need treatment, and what treatment you will have
  • your age and overall wellbeing
  • your support network 
  • what stage of life you are at (are you retiring from work, raising small children, getting married or buying a house)
  • whether you live in the city or rurally.

Regardless of all these things, everyone with lymphoma needs to make changes that you wouldn’t otherwise need to make. Coping with this impact can be stressful and create new challenges in your life.

The following sections will provide some helpful advice on how to manage everyday activities and things to think about so you can plan ahead.

Navigating the health care system

Having to navigate the health care system can be very challenging, particularly when each hospital is very different and everyone’s own experiences differ greatly. 

In this video below, Andrea Patten who is a senior social worker talks about your rights and some important considerations, if yourself or a loved one has been diagnosed with lymphoma.  

Work

You may be able to continue working or studying with lymphoma. However, this will depend on how you feel, what treatment you have and how whether you are having any symptoms from the lymphoma, or side-effects from treatment.

Some people continue to work as they were before and only take time off for appointments, others reduce their work to part-time and still others take time off work altogether. 

Talk to you doctor, loved ones and workplace

Talk to you doctor about what they suggest when it comes to work and time needed off work. They will be able to write you a medical certificate if needed.

Talk to your family, loved ones and your workplace to come up with a plan. Make sure everyone knows that sometimes plans can change unexpectedly if you need to go to hospital, get delayed at appointments or feel unwell and fatigued.

Some people find that continuing to work helps them maintain some normality in their routine and helps them to cope better during treatment. Other people find work too physically and mentally exhausting and decide to take a leave of absence.

Possible changes at work to consider

If you continue to work, some changes that your work may be able to make to support you include:

  • Allowing time off to attend medical appointments and treatment
  • Reducing or changing the hours you work (shorter days or reduced work week)
  • Working from home
  • Adjusting the kind of work, for example transferring to a less physically demanding role or avoiding infection substances
  • Altering the workplace
  • Transitioning back to work program: this might include gradually returning to work at a reduced capacity that slowly increases over time.

The following link is to Centrelink’s ‘Verification of Medical Conditions Form’. This form is often required by study institutions or workplaces to make reasonable adjustments to work or study commitments. 

Study

Having lymphoma is likely to impact study, whether it be at school, university or work-related studies This impact can affect you if you are student, parent or carer. You may need to need take time off or change your study plan.  

Some people choose to continue their study while undergoing treatment, or caring for someone with lymphoma. For some people,  continuing study can provide  something to work towards and focus on between hospital admissions and long waiting times between appointments. Other people find that continuing study provides unnecessary pressure and stress, and choose to defer their university degree or take time off school.

If you or your child is still at school, speak with the school/university and discuss what support options are available.

Possible changes to your study plan to consider

  • Home tutoring or connecting with the hospital teaching service (often children’s Hospitals provide a schooling support program where the hospital teachers can visit in hospital)
  • Speak to the school regarding a reduced assessment load or modified learning program where learning can continue but with less formal assessment requirements.
  • Continue to keep connected with the school and pupils, this will help maintain connections and avoid becoming too isolated from school friends.

Meet with the school principle or academic advisor

If you are studying a degree at university, meet with the college registrar and academic advisor to discuss your situation. Deferring your studies altogether may be an option, however reducing your study load by dropping from full-time to part-time could be an option.

You may also be able to change the due dates of your assignments or exams around your treatment. You will probably need a medical certificate so ask your specialist doctor or GP if they can do one for you.

The following link is to Centrelink’s ‘Verification of Medical Conditions Form’. This form is often required by study institutions or workplaces to make reasonable adjustments to work or study commitments. 

Finances

A lymphoma diagnosis and its treatment can create financial strain; Especially you are unable to work for long periods of time.

Receiving financial support can be complex, but there are some financial support payments available through various government organisations such as Centrelink, Medicare and Child Support. You may also be able to access some payments through your superannuation fund.

If you have a financial advisor, let them know about your lymphoma so they can help you plan how to manage your money. If you do not have a financial advisor, you can access one through Centrelink. Details on how to access a Centrelink financial advisor are below under the heading Financial Information service.

Centrelink

People with disability, illness or injury, and their carers can call Centrelink on 13 27 17 to enquire about payments and services available. Click on the following link to read: A Guide To Australian Government Payments.

Some of the Centrelink payment services include:

  • Sickness allowance: An income support payment if someone is unable to work or study for a period of time due to illness, injury or disability.
  • Carer allowance: additional payment (bonus) subsidies the carer payment (in-additional) can earn up to 250,000/year (roughly $131/fortnight) can work 25 hours and still be on this.
  • Carer payment: An income support payment if you give constant care to someone who has a severe disability, illness or is frail aged.
  • Disability support pension: Financial support for permanent intellectual, physical or psychiatric disability that stops patients from working.
    • Download and complete the ‘Claim for Disability Support Pension’ form
  • Disability benefits: There are payments and services to help if you are ill, injured or have a disability.
  • Payments for Children
  • Mobility allowance: You may be able to access mobility allowance if you have lymphoma and are unable to use public transpont. This can be used need to travel for study, training work (including volunteering) or to look for work. See more by clicking here.
  • Job Seeker allowance: If you are on Job Seeker allowance and are unable to look for work due to your lymphoma or its treatments, ask your doctor – GP or heamatologist to fill our a Centrelink Medical Certificate – form SU415. You can get to the form by clicking here

Social Workers

If you need help to understand or access centrelink services, you can ask to speak to one of their social workers who can help you work out what you may be entitled to, and how to access it. You can contact a Centrelink Social Worker by phoning 13 27 17. Ask to speak to a social worker when they answer and they will put you through. You can also look at their website here Social work services – Services Australia.

Financial Information service

Another service Centrelink provides is a Financial Information service to help you plan how to make the most of your money. Phone them on 13 23 00 or see their webpage here Financial Information Service – Services Australia

Medicare

Medicare can help cover medical costs and advise on how to keep costs down. Information on the various Medicare payments and services available can be found here.

Child Support

  • Carer adjustment Payment is a one-off payment. It helps families when a child younger than 6 is diagnosed with one of the following:
    • a severe illness
    • medical condition
    • major disability
  • Child Disability Assistance Payment is a yearly payment to help parents with the costs of caring for a child with disability.
  • Essential Medical Equipment Payment is a yearly payment to help with increases to home energy costs. This can be from the use of essential medical equipment to help manage disability or a medical condition.

Superannuation

While superannuation is usually protected until you turn 65 years of age, in some circumstances you may be able to access some of it on ‘compassionate grounds”. Some situations that may be considered compassionate grounds include:

  • Paying for medical treatment (or transport to and from treatment).
  • To help with your mortgage if the bank is about to foreclose (take possession of your house).
  • Renovations if you need to modify your house due to injury or illness.
  • Pay for palliative care.
  • Pay expenses related to the death of one of your dependants – such as funeral or burial costs.

You can get more information on accessing your superannuation on compassionate grounds, by phoning the Federal Department of Human Services on 1300 131 060.

Insurances built into superannuation

Many superannuation funds have a built in ‘income protection’ or total permanent disability payment in the policy. You may have this without even knowing it. 

  • Income protection covers a portion of your normal wage/salary when you are unable to work due to sickness or injury. 
  • Total permanent disability is a lump sum paid out to you if you are not expected to get back to work due to your illness.

Your insurances will depend on your superannuation company and policy. If you are unable to work due to your lymphoma, contact your superannuation fund and ask what support and insurances are built into your policy.

Social Activities

 

Social activities are a good way to stay connected with family and friends, and can be a welcome distraction from the various stresses that come with a lymphoma diagnosis. Staying connected should be a main goal during this time.

You may however need to adjust or change some of your activities to avoid complications such as infection, bleeding or because you are too tired to do your normal activities. 

Below we list some common things to consider when engaging in social activities with lymphoma. 

Having a Central Venous Access Device (CVAD)

If you have a CVAD such as a PICC line or CVC line you will not be able to swim or participate in water-based activities, and you will need to cover the CVAD with a waterproof dressing to shower.  This is because the catheters for these devices are on the outside of your body and can become damaged or infected with these sorts of activities.

Most hospitals should be able to supply you with a waterproof cover – just ask when you get your dressings changed.

For social or competitive swimmers, you will need to put these activities on hold, or you may choose to opt for a port-a-cath instead. A port-a-cath is device that is fully under your skin, except when it is in use and has line needle and line attached to it.

Patient story - having CVAD while in hospital

Peripherally inserted central catheter (PICC)

Dual lumen HICKMAN – a type of Tunnelled cuffed-centrally inserted central catheter (tc-CICC)

Triple lumen non-tunnelled central catheter

For more info see
Central Venous Access Devices
Contact sports

Contact sports such as football, hockey and soccer could cause severe bleeding and bruising if you have low platelets levels, which is common after treatment, and with some types of lymphoma. 

Also being too close to people during physical activity (which can cause heavy breathing) can increase your risk of infection if they have a respiratory illness or are otherwise unwell.

Large social Events

Treatment, or you lymphoma can result in your immune system not working properly to protect you from germs. So it is advised to avoid attending large social events like the theatre, concerts, fares and nightclubs, while you are neutropenic. 

If you cannot avoid an event for some reason, take precautions to socially distance, wear a mask, and only hug and kiss people you know well and who not in any way sick (or avoid hugs and kisses until your immune systems if you feel safer doing this). Take hand sanitiser with you so you can disinfect your hands at any time.

Social engagements that can continue during treatment

There are many things you can continue to do when you have lymphoma, even while having treatment. However, you may like to consider taking extra precautions such as social distancing, wearing a mask and carrying hand sanitiser with you for some of them.

Talk to your doctor and ask about any specific events that are important to you and if there are any restriction on what you can do. 

  • Going to the movies
  • Going out to dinner at a restaurant – avoid buffets and make sure food is freshly made
  • Catching up with friends for coffee
  • Taking a walk with a friend
  • Having a picnic
  • Attending church and religious related gatherings 
  • Going on a long drive
  • Attending the gym
  • Continuing hobbies such as book club, group fitness or painting 
  • Go on a date
  • Get married or attend a wedding 
  • Have sex or be intimate with your partner/spouse (See link below for more information).
For more info see
Sexual intimacy during lymphoma treatment

Looking after your mental health, emotions and overall wellbeing

Living with lymphoma or CLL, being on watch and wait, having treatment and being in remission all come with different stressors that can affect your mood and mental health. It is important to have an open relationship with your local doctor (general practitioner or GP), and discuss and concerns you have, or changes to your mood, emotions and thoughts.

Your GP will be able to support you and refer you to the appropriate services if you need support.

Mental health plan

Your GP will be able to do a mental health plan for you which will make sure you get to see the right specialists and have access to Medicare-subsidised with a clinical psychologist, specialist GP, social worker or clinical occupational therapist. With this plan you can access up to 10 individual appointments and 10 group sessions.

Don’t wait for your GP to offer this, if you think it could be of use to you, ask your GP to do a mental health plan for you.

GP management plan

Your GP can also do a GP management plan (GPMP) for you. This plan helps them to identify your health care needs and how they can best support you. They can also use this plan to identify what services in the community may be of use to you and make a plan for managing your lymphoma care needs. 

Team care arrangements 

A team care arrangement plan is done by your GP and is done to help you access support from different allied health professionals. This can include:

  • physiotherapists
  • dieticians
  • podiatrists
  • occupational therapists.

Pets

 

 

Pets can be a very important part of our lives, and caring for your pet when you have lymphoma will take some extra planning. Lymphoma and its treatments can make it more likely for you to get infections, or bleed and bruise badly if you accidently get bitten, scratched or have a heavy pet come for a cuddle.

You will need to take care to stop these things from happening and maybe change the way you play with your pets. 

 

Things to do

  • Let your doctor know if you do get bitten or scratched, or you notice unusual bruising.
  • Avoid handling animal waste such as litter trays. Ask someone to help you with these tasks if possible. If there is no one to help, use new gloves (or washable ones washed after every use), wear a mask to avoid breathing in anything harmful and wash your hands with soap and water immediately after handling any waste.

You may also have unexpected visits to hospital, need to be away from home indefinitely, be delayed at appointments or feel more tired and lack the energy to care for your pets.

Plan ahead and start thinking about who may be able to help care for your pets when you cannot. Letting people know early that you may need help, and asking if they would be willing to help before it’s needed may give you peace of mind and make planning much easier when you need the help.

Planning for treatment

Dealing with the emotional and physical pressures of having lymphoma, and treatment can be exhausting. It is important to reach out and get support when you need it. Often we have people in our lives that want to help, but don’t quite know how. Some people also worry about talking about how you are going because they are concerned they will say the wrong thing, overstep or upset you. This does not mean they don’t care. 

It can help to let people know what you need. By being clear about what you need, you can get the help and support you need, and your loved ones can have the joy of being able to help you in a meaningful way. There are some organisations that have put together plans you can use to coordinate some of the care. You may like to try:

Public verses Private Hospital and Specialists

It is important to understand your health care options when you’re faced with a lymphoma or CLL diagnosis. If you have private health insurance, you may need to consider whether you want to see a specialist in the private system or the public system. When your GP is sending through a referral, discuss this with them.  If  you do not have private health insurance, make sure to let your GP know this too, as some may automatically send you to the private system if they don’t know you would prefer the public system. This can result in being charged to see your specialist. 

You can always change your mind and switch back to either private or public if you change your mind.

Click the headings below to learn about benefits and downsides of of having treatment in the public and private systems.

Benefits of the Public System
  • The public system covers the cost of PBS listed lymphoma treatments and investigations for
    lymphoma such as PET scans and biopsy’s.
  • The public system also covers the cost of some medications that aren’t listed under the PBS
    like dacarbazine, which is a chemotherapy medication that is commonly used in the
    treatment of Hodgkin’s lymphoma.
  • The only out of pocket costs for treatment in the public system are usually for outpatient
    scripts for medications that you take orally at home. This is normally very minimal and is
    even subsidised further if you have a health care or pension card.
  • A lot of public hospitals have a team of specialists, nurses and allied health staff, called the
    MDT team looking after your care.
  • A lot of large tertiary hospitals can provide treatment options that aren’t available in the
    private system. For example certain types of transplants, CAR T-cell therapy.
Downsides of the public system
  • You may not always see your specialist when you have appointments. Most public hospitals are training or tertiary centres. This means you may see a registrar or advanced trainee registrars who in clinic, who will then report back to your specialist.
  • There are strict rules around co-pay or off label access to medications that aren’t available on the PBS. This is dependent on your state health care system and may be different between states. As a result, some medications may not be available to you. You will still be able to get the standard, approved treatments for your disease though. 
  • You may not have direct access to your haematologist but may need to contact a specialist nurse or receptionist.
Benefits of the private system
  • You will always see the same haematologist as there no trainee doctors in private rooms.
  • There are no rules around co-pay or off label access to medications. This can be particularly helpful if you have multiple relapsed disease or a lymphoma subtype that doesn’t have a lot of treatment options. However, can get quite expensive with significant out-of-pocket expenses you will need to pay.
  • Certain tests or work up tests can be done very quickly in private hospitals.
Downside of private hospitals
  • A lot of health care funds don’t cover the cost of all the tests and/ or treatment. This is based on your individual health fund, and it is always best to check. You will also incur a yearly admission fee.
  • Not all specialists bulk bill and can charge above the cap. This means there can be out of pocket costs to see your doctor.
  • If you require admission during your treatment, the nursing ratios are a lot higher in private in hospitals. This means that a nurse in a private hospital generally has a lot more patients to look after than in a public hospital.
  • Your haematologist it not always on site at the hospital, they tend to visit for short periods once a day. This can mean if you become unwell or need a doctor urgently, it isn’t your usual specialist.

Protecting your fertility during treatment

Treatment for lymphoma can reduce your fertility (ability to make babies). Some of these treatments can include chemotherapy, some monoclonal antibodies called “immune checkpoint inhibitors” and radiotherapy to your pelvis. 

Fertility issues caused by these treatments include:

  • Early menopause (change of life)
  • Ovarian insufficiency (not quite menopause but changes to the quality or number of eggs you have)
  • Diminished sperm count or quality of sperm.

Your doctor should talk to you about what affect your treatment will likely have on your fertility, and what options are available to help protect it. Fertility preservation may be possible with certain medications or through freezing ovum (eggs), sperm, ovarian or testicular tissue. 

If your doctor has not had this conversation with you, and you plan to have children in the future (or if your young child is starting treatment) ask them what options are available. This conversation should happen before you or your child starts treatment.

If you are under 30 years of age you may be able to get support from the Sony foundation who provide a free fertility preservation service across Australia. They can be contacted on 02 9383 6230 or at their website https://www.sonyfoundation.org/youcanfertility.

For more information on fertility preservation, watch the video below with fertility expert, A/Prof Kate Stern.

Taxi Concession Programs

If you need extra help getting around, you may be eligible for a taxi concession program. These are programs run by the different states and territories and can help subsidise the cost of your taxi fare. For more information click on your state below.

Travel & Travel Insurance

After or even during treatment some patients may be interested in going on a holiday. A holiday can be a wonderful way to celebrate completing treatment, create memories with loved ones, or just a happy distraction from the cancer-related stress.

In some cases, you may need or want to travel during your treatment, or at a time when you are due to have post treatment scans and blood tests. Talk to your doctor about what can be arranged for you during this time. If you are travelling in Australia, your medical team may be able to organise for you to have your check-up or scans at a different hospital – even in a different state. This can take some time to arrange, so let you doctor know as soon as possible if you are planning to travel.

If you are travelling to another country, you will need to see what costs are involved if you need to have medical care relating to your lymphoma there.  Talk to your haematologist in Australia and investigate travel insurance companies that may cover you. Make sure to ask what is and is not covered in the insurance policies.

What is travel insurance and what does it cover?

Travel insurance covers you for any incidents, losses or injuries that may occur while you are travelling. While most travel insurance protects you for international travel, some policies may cover you for domestic travel as well. 

Medicare will cover some (and sometimes all) of your medical costs while in Australia.

Travel insurance policies can cover you for lost luggage, disruptions to travel, medical and dental expenses, theft and legal expenses and much more depending on the company and the type of cover you buy.

Where can I get travel insurance?

You can get travel insurance through a travel agent, insurance company, insurance broker or through your private health insurance. Some banks may even offer free travel insurance when you activate a specific credit card. Or, you may choose to purchase travel insurance online where they can compare prices and policies.

Whichever way you choose to do this, take time to read and understand the insurance policies and any exemptions that may apply.

Can I get travel insurance if I have lymphoma/CLL?

Generally speaking, there are two options when it comes to travel insurance and cancer.

  1. You choose to take out an insurance policy which DOES NOT cover you for cancer-related complications and illness. For example, if you were travelling overseas with significantly low white blood cells due to chemotherapy and contracted a life-threatening infection which required a lengthy hospital admission, you would need to cover the costs yourself.
  2. You choose to take out a comprehensive policy which DOES COVER you for cancer-related complications or illness. You will need to be prepared to pay a much higher premium, and the insurance company may need to gather very in-depth information about your lymphoma/CLL such as stage, treatment, blood tests etc. You will likely also need a letter from your haematologist clearing you for overseas travel.

Some information you will need to have on hand when speaking to travel insurer:

  • Your lymphoma subtype
  • Your stage at diagnosis
  • Your treatment protocols
  • When you completed your last treatment
  • Your most recent blood tests
  • All medication you are currently taking
  • Whether more tests/investigations are planned for the next 6 months.

Driving

A diagnosis of lymphoma does not automatically impact your ability to drive. Most people continue to drive in the same capacity as before they were diagnosed. However, some medications that are used as part of the treatment can cause drowsiness, a feeling of being sick or affect the ability to concentrate. In these situations, driving is not recommended.

Whilst most patients continue to drive as normal during their cancer journey it is quite common to feel fatigued or tired on the days when the treatment is given.

If possible, organise with family and friends for someone to drive you to and from treatment and if this is a problem you should ask the health care team if they have any advice as other transport options might be available.

If a doctor expresses concerns regarding the driving ability of a patient this needs to be reported to the transport department. It is also recommended that the insurance company is informed of the patient’s diagnosis or any concerns which the doctor might have in regards to their ability to drive.

Some patients experience side effects from treatment that can impact their driving capacity:

  • Severe peripheral neuropathy can affect the feeling in your feet and hands.
  • Chemo-brain is reduced concentration and increased forgetfulness, some people describe this as a fog over their mind. Severe experiences of this might make it seem uncomfortable to drive.
  • Fatigue, some people become extremely tired during treatment and find even daily tasks such as driving wears them out.
  • Hearing or vision changes, if there are any changes in vision or hearing, speak with the doctor regarding how this might impact the ability to drive.
For more info see
Side-effects of treatment

Getting affairs in order

Life Insurance

A new diagnosis of lymphoma should not affect your existing life cover policies. However, it is important to always be honest with your insurance providing when asked questions.  Speak with your insurance company if you need to make a claim during diagnosis, treatment and life post treatment.

You may also have life insurance as part of your superannuation fund. Contact your superannuation fund to see when and how you can access this.

If you do not already have insurance, but would like to get some, you will need to let them know you have lymphoma and provide any information they need to give you a quote.

Writing a will

The Australian Government recommends that anyone over the age of 18 years, writes a will regardless of whether you ‘need’ to or not.

A will is a legal document that states how you would like your assets to be distributed if you should pass away. It is also a legal document that records your preferences for the following:

  • Who you appoint to be the guardian of any children or dependents you are responsible for.
  • Establishes a trust account to provide for any children or dependents.
  • Outlines how you wish to preserve your assets.
  • Outlines how you wish your funeral to be arranged.
  • States any charity donations you want to specify (this is known as a beneficiary).
  • Establishes an executor – this is the person or organisation you appoint to carry out the wishes of your will.

Each state and territory in Australia have a slightly different process for writing your will.

Read more about how to write a will in your own state or territory.

Enduring Power of Attorney

This is a legal document that appoints a person or some select people to make financial decisions, manage your assets and make medical decisions on your behalf should you become unable to.

This can be established through your state or territories public trustee. A medical enduring power of attorney can be done with an Advanced Health Directive.

Advanced Health Directive is a legal document that outlines your preferences in regard to medical treatments and interventions that you do or do not want.

To access more information on these documents, click the links below.

Advanced Health Directive

Enduring Power of Attorney – click on your state or territory below.

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