So here you are – never in a million years did you think you would be dealing with this. Cancer? Me? Now? This can’t be happening. You’re so young, it makes no sense. It isn’t fair!
The word “cancer” carries a huge weight with it – a weight that you likely took on the moment you heard your doctor utter this word. Now you are struggling to understand this type of cancer – lymphoma – and what having lymphoma is going to mean for your life and all the plans, hopes and dreams you’ve been working toward.
Here are a few things you need to know from the get-go:
1. You are not the only one going through this. Many people your age (15 to 39 years old) are dealing with this. Perhaps the most important thing you can do is to hook up with some of these people – via e-mail, Facebook, chat rooms, telephone, group talks – whatever. Just do it. Call us or a cancer centre or ask your doctor or nurse how you can get in touch with others your age. Hearing how others have dealt with this is huge. Not to mention hearing how others your age have tackled lymphoma head-on and won. Those are stories you need to hear.
2. There are lots of resources for you.
Web sites, podcasts, books, blogs, the Lymphoma Patient Resource manual and more – resources that can provide you with the information you need right now and in the future. Most importantly, when you check out some of these sites, you will feel less alone, because you will know that there are others who understand. They have gone through it, or have helped others through it, and they understand that young adults dealing with cancer have a whole different set of concerns. The sooner you understand how to better navigate these concerns, the more you will feel in control of your situation.
3. Knowledge is power.
The more you know about lymphoma, including the treatment options, side effects, follow-up care and particular information related to your specific type of lymphoma, the more you can be an active participant in your care. This will help you make educated decisions and feel in control. This Web site contains a lot of detailed information on all of these topics. Be sure to check out the other sections to learn as much as you can.
Where to Begin
This Web site is an excellent starting point and a valuable resource. It is written in layperson’s terms and aims to empower lymphoma patients by offering the information required to tackle this cancer head-on. It will help you understand lymphoma in general and distinguishes between the different kinds of lymphoma – both Hodgkin and non-Hodgkin lymphomas – breaking them down into simple terms. There are also sections outlining treatments and side effects. Many diagrams and visual aids make the information easy to understand. This Web site aims to empower all people who are dealing with lymphoma through information as well as resources. As such, there are sections of the Web site specifically devoted to patient empowerment and patient resources.
Take Care of Yourself
First and foremost, take care of yourself. See your doctor, show up for all your appointments and treatments, keep track of the healthcare you receive, eat well and stay active if you can. Take on the responsibility of getting yourself well with all you’ve got. Take control of your health. You didn’t count on this, and no – it isn’t fair (not at all). But it’s here and it’s real and you’ve got to hit it full force.
Know the Issues
Read up on what the main issues and concerns are for people your age who are dealing with lymphoma. It may be worthwhile to get a sense of these issues from the outset, so that they don’t throw you for a loop down the road. Once you have a sense of this, you can seek out resources that will help you mitigate them should they come up.
Lymphoma Canada can help you determine some of these issues or discuss the best next steps to take.
You may begin by reading the following list of key issues and concerns facing young adults with lymphoma, including a brief explanation of each. Also, a list of resources follows and can be used to help you understand these topics.
Key Issues for Young Adults
Independence
- At a time in your life when you are becoming independent of family and may be living away from home (e.g., at university, working away from home, etc.), you may now need to consider moving back home as you may again need the support (physical, emotional and financial) of your parents.
Disclosure
- Deciding if and when to drop the “c-bomb” to friends and coworkers can be difficult.
- Once people know, it may change things, and it is important to try to maintain some sense of normalcy in your life.
- However, having close friends to lean on during this time can trump the need for privacy and/or normalcy.
- Telling your boss and/or coworkers can also be problematic, as you do not want your illness to affect how you are perceived in the workplace and do not want to put your career and/or healthcare benefits in any kind of jeopardy.
Isolation
- It may be hard to relate to friends as their problems now seem so small in comparison to your fight with cancer.
- It may be hard to know who to talk to or count on.
- People may act differently toward you once they know.
Relationships
- Relationships on all levels – family, friends, partners, dating – can become more complicated when you have cancer.
- However, maintaining important relationships in your life are critical to your well-being and recovery.
- Let people know how they can be a part of your life and how they can help you – they may not know.
- It may take time to find a new balance in these relationships, but working at them is an important process to tackle.
- You need people now more than ever – keep loved ones close.
Appearance
- Your appearance may change as you deal with cancer and cancer treatment.
- Your weight may change, chemotherapy could cause you to lose your hair.
- It is not vain to be concerned about these things.
Employment and Long-term Disability Coverage
- Disability insurance can replace a portion of your salary during periods when you are sick and not able to work.
- However, this can be a problem if you have only been working at your job for a short period of time, as disability benefits take time to kick in.
Inexperience with Making Major Medical Decisions
- Having to make critical decisions regarding the course of your treatment can be overwhelming.
- Signing consent forms with scary side effects can seem daunting.
Life-cycle Interruption
- You envisioned how your life was going to unfold and it did not include a battle with cancer.
- You may feel as though your life goals have been hijacked and are being held hostage by this diagnosis.
- Trying to keep up with studying, working, social life and relationships can become challenging when you are dealing with cancer and related treatments.
- Modifying your life to accommodate this new goal (treating your cancer and working toward recovery) is important and can make the process more manageable.
Fertility
- Cancer treatments can affect your ability to have children.
- While this may not be something you were ready to think about, it may be important to consider saving your sperm or eggs now so they can be used later in life to conceive a child.
Fear of Dying
- It is inevitable that with a diagnosis of cancer comes the fear of dying.
- It may seem unbelievable that you have to consider death at this point of your life and obviously the possibility is very frightening.
- It is important to know that every cancer diagnosis is different, and there are always reasons to be hopeful.
- Not all cancer patients die.
Survivorship
- While cancer is a definite hardship, it brings with it many opportunities for refocusing your life and bringing about positive change.
- Learning to embrace a new “normal” is a process that requires patience and awareness.
When Treatment is Over
Ensure that you continue with your medical care once your cancer treatments are completed. This means keeping in contact with your medical team and attending your follow-up visits – this is crucial to your recovery and long-term survival. People in your age group have a tendency to become lax with their follow-up care, which can have detrimental effects. Again, be responsible about getting yourself well and staying well with all you’ve got. Be proactive and get checked out regularly.
Resources for Young Adults with Cancer
- Contains lymphoma-specific information including background on lymphoma, treatment and side effects, resources and support, as well as information for newly diagnosed patients.
Lymphoma Association in the UK:
- This link is to their Living with Lymphoma section, from which you can download documents on various aspects relevant to lymphoma patients (not specific to young adults).
- Features Web casts and podcasts on relevant topics including lymphoma-specific issues (e.g., indolent lymphoma, watch and wait), as well as more general issues for young adults with cancer, resources and support contacts.
- The resource list is a great list of on-line resources for young adults with cancer (US information).
- A young adults Canadian site with very poignant YouTube videos featuring young cancer patients who are dealing with relevant issues.
- They also run cancer retreats for young adults.
- This link is to the Livestrong Podcast Series for Young Adults with Cancer.
- Excellent podcasts on various topics – many of those mentioned above – featuring young cancer patients (US information).
- The Young Adult Program contains a link to useful information on counselling, support groups and podcasts, and offers downloadable publications including fact sheets on various topics (US information).
Leukaemia Foundation of Australia:
- Contains useful information on counselling and support groups, as well as podcasts and downloadable publications (i.e., fact sheets on various topics.).
