Living with lymphoma – The practical stuff

This page provides practical advice and information when living with a lymphoma diagnosis.

On this page:

Practical Everyday

A diagnosis of lymphoma will impact on the daily life of a patient, family and friends . The degree in which everyday life is impacted, will depend on the patient’s feelings, the type of lymphoma, the treatment , and the patient’s stage of life .

For example, a young person working full-time and raising young children will be impacted differently than an older, retired adult with no dependents. Both individuals will experience the impact of a lymphoma diagnosis in ways that are unique to their stage of life and their personal situation.

Coping with this impact can be stressful and the following sections will provide some helpful advice on managing everyday activities.

Work

Some people continue to work throughout their lymphoma diagnosis and treatment. Continuing to work depends on your own individual situation. What is suitable, achievable and maintainable for one person will be very different for someone else. It is important to remember that there is no ‘right’ or ‘wrong’ when living with lymphoma and each person is entitled to handle things in a way that suits them.

Continuing to work during lymphoma treatment depends on the treatment, the type of work and how the patient is feeling. Some people choose to continue, others reduce their work to part-time and still others take time off work altogether. It is largely an individual choice to be made in consultation with the doctor and the workplace. Continuing to work is a decision that can be revised at any point in the treatment journey. Some people choose to continue their full-time duties, then part-way through treatment decide they need to reduce their work or stop work altogether.

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.

Some workplaces require a doctor’s certificate to support a leave of absence or to make reasonable adjustments to duties. The doctor should be able to provide whatever supportive documentation the workplace might require.

Some of the potential work adjustments to consider include:

  • Allowing time off to attend medical appointments and treatment
  • Reducing or altering the hours of work (shorter days or reduced work week)
  • Working from home
  • Adjusting the kind of work, for example transferring to a less physically demanding role
  • 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. The following link will lead you to a page where this form can be downloaded and filled out, this form may need to be renewed every 3 months.

Study

A lymphoma diagnosis and treatment is likely to impact study, whether it be at school, university or work-related studies, there may be a need to take time off from studying.

Some people choose to continue their study while undergoing treatment, some people find that continuing their study provides them with 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, these people might defer their university degree or take time off school.

If you or your child is still at school, speak with the school and discuss what support options are available so that school can continue. Do not have to feel stressed and anxious about missing multiple days of school. Some possible learning supports might include:

  • 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.

 

If the patient is studying a degree at university, it would be best to meet with the college registrar and academic advisor to discuss the situation. Deferring studies altogether may be an option, however reducing the study load by dropping from full-time study to part-time or reducing the number of subjects enrolled in could also be an option.

Speaking with the university about adjusting the assessment due dates to accommodate the treatment study capacity may also help.cA medical certificate to assist the university in providing these adjustments can be provided by your doctor.

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. This form can be downloaded and completed. It may need to be renewed every 3 months, depending on the requirements of an institution

Finances

A lymphoma diagnosis and subsequent lymphoma treatment can create financial strain. Particularly if patients are unable to work for prolonged periods of time.

Receiving financial support can be complex, it is best to seek professional support during this time but there are some financial support payments available through various government organisations to help. Centrelink, Medicare and Child Support

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

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.

Social Activities

Continuing to maintain social activities is a great goal to have throughout the entire cancer journey. Some people, however, might find that they don’t have the energy to continue certain activities. For other people, treatment related events might interfere with their ability to maintain some of their normal 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 can come with a lymphoma diagnosis. Some side effects of treatment (such as fatigue) can impact on the capacity to continue engaging at the same level. It is important that patients do not overextend themselves, communicate with social networks and let them know what you can and can’t handle.

The social goal during diagnosis, treatment, and life after treatment, is to have a social life that supports you, and helps you cope with the emotional impact of living with lymphoma.

For the most part, people with lymphoma or CLL are encouraged to continue social engagements. Some social situations however, like sports and large events, might need to be put on hold during treatment, for example:

  • The presence of a central line (PICC or CVL) can interfere with swimming, as these devices cannot be submerged in water. For social or competitive swimmers, this might need to be put on hold during treatment.
  • Contact sports such as football, hockey and soccer could cause severe bleeding (bruising) if there is a low level of platelets from treatment.
  • Attending large social events like the Royal Melbourne Show or the Brisbane Exhibition are not recommended when the immune system is particularly weak.
  • Attending large concerts during times when the immune system is especially weak is also not advised.
  • Any avoidance of large crowds is a precautionary measure to protect you from getting an unwanted infection

 

Social engagements that can continue during treatment (in consultation with your doctor)

  • Going to the movies
  • Going out to dinner at a restaurant
  • Catching up with friends for coffee
  • Taking a walk with a friend
  • Having a picnic
  • Attending church and religious related gatherings (keeping in mind that extra-large gatherings are not wise to attend when the immune system is fragile)
  • Going on a long drive
  • Attending the gym
  • Going on a date
  • Continuing hobbies such as book club, group fitness or painting (just a few examples)

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.

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 mostly travel insurance protects you for international travel, some policies may cover you for domestic travel as well. Although Medicare will cover all 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 secure

Where can I get travel insurance?

You can obtain 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. Many people choose to purchase travel insurance online where they can compare prices and policies. Whichever way you choose to do this, ensure that you 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 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.

Getting affairs in order

Life Insurance

A lymphoma diagnosis should not impact on existing life cover policies, providing there has been honesty with the insurer about any and all pre-existing medical conditions. Speak with the insurance company if you need to make a claim during diagnosis, treatment and life post treatment.

For patients with no life insurance and wishing to start a new policy, the current lymphoma diagnosis will make things more complex. It is best to contact the insurer you wish to go with and discuss with them the possible policies that may be available. It is likely that a lymphoma diagnosis will mean a higher insurance premium.

Writing a will

A lymphoma diagnosis is something which can cause people to stop and re-order their affairs. Preparing for the worst-case-scenario is something that some people want to do, while others prefer not to. There is no right or wrong way of dealing with a lymphoma diagnosis, and if you want to write a will for the first time, or restructure a will, that is ok. The Australian Government recommends that anyone over the age of 18 years, writes a will regardless of whether they ‘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 preferences for the following:

  • Who you appoint to be the guardian of any children or dependants you are responsible for
  • Establishes a trust account to provide for any children or dependants
  • 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 has a slightly varied documentation process.

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 established in-conjunction 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.

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