Find connections and lean on others who have experienced the diagnosis of a brain tumour.
The topics below include:
How to tell a loved one about your brain tumour diagnosis can be a difficult choice to make. You might be unsure about how much information to share, or be worried about burdening the person you tell. There is no set time when you will feel ready to discuss your diagnosis with others. Only you know the right way to tell your family and friends.
Before you talk to someone about your diagnosis, think about your reasons for telling them and what you expect of them. There could be a wide range of reactions from your loved ones – they may feel uncomfortable because they don’t know what to say or how to act.
Here are a few tips to consider:
It’s important to remember that sharing can be helpful both to you and those close to you. Most likely your loved ones’ hearts are in the right place, and they want to help you any way they can, but they are not sure how. Be direct with others and express your needs and feelings openly.
When you keep other people involved and informed about your brain tumour diagnosis, it helps ease your emotional burden. Friends and family can share their strength with you and with each other, which can be helpful for everyone.
Hope can be a very powerful feeling. It can be the cure to hopelessness and despair. Hope is also the possibility that things will get better and the future will be positive. When you have hope, it can encourage you to do things that will improve and benefit you in the future. While hope is a comforting and beneficial emotion, it can also be hard to hold onto, especially when dealing with a brain tumour diagnosis. Dealing with this diagnosis is an extremely frightening time and can create a negative outlook for the future. You may be unsure about what will happen and predict the worst, resulting in a loss of optimism.
So how do you regain a sense of hope and hold onto it?
Mindfulness is about being fully present with your direct experience, whatever you are thinking, doing, or feeling – in the here and now. Mostly we are not aware, or fully with the experience, we are having at the present moment. We can be doing an activity functioning on automatic while worrying about something about to happen or thinking about something that occurred earlier.
When we practice being mindful, we do something and know that we are doing it (e.g. eating and really tasting the food, going for a walk and truly noticing nature around us, or turning on the radio and actually listening to the music). Many possibilities are offered through becoming more mindful; we may find more to appreciate in the ordinary experiences of our day.
Mindfulness also helps us to learn to respond differently to difficult situations. Instead of immediately reacting by imagining the worst, we learn to stop and come back to the direct experience we are having now. This changes our outlook and gives us an opportunity to find other ways of managing what is challenging us.
A cognitive model of cancer distress can be described as a vicious cycle of anxious preoccupation. This model can certainly apply to anyone affected by a brain tumour, be it malignant or non-malignant. The circle starts with some general anxiety, which is often present in the experience of brain tumour patients. This anxiety triggers tension in the body that is felt as an ache or pain. Attention is drawn to these unpleasant, unwanted feelings and negative interpretations soon start forming (e.g. “It is getting worse?”, “It might be a recurrence”). These undesirable thoughts are added to the feelings of anxiety, fueling the tension and physical pain. This leads to more negative interpretations, making them increasingly convincing.
Through practicing mindfulness, participants learn to notice and interpret the cycle of anxious preoccupation. Thoughts may still arise, anxiety may still be felt, and interpretations may even begin; however, it may be possible to recognize the thoughts, feelings, and body sensations for what they are – not necessarily true facts. This offers a connection to present moment awareness and an opportunity to choose how to cope, rather than becoming overwhelmed by negative thoughts and feelings.
There is an increasing amount of research showing improvements in various issues like anxiety, depression, stress and illness-related fatigue across different mindfulness-based therapies.
There are a number of ways to incorporate Mindfulness Practice into daily life while recovering from a brain tumour. Mindfulness training can be available through treatment facilities and workshops in your community. It is possible to begin short mindfulness practice at home through the use of self-help books and websites, designed to guide short mindfulness practice with scripts, audio and video. Some examples of short mindfulness practices include: The Pause, Coming to Breath, Body Scan, 3-Minute Breathing Space and performing routine activities mindfully.
The diagnosis of a brain tumour can often push patients and families into “emergency mode,” as you run to appointments and treatments while trying to maintain everyday needs like shopping, cleaning, and providing personal care, all while trying to maintain a job and a personal life. And, after the immediate diagnosis crisis has passed, stress from the new normal of a brain tumour, does not disappear. Long-term exposure to stress can lead to serious health problems, as chronic stress disrupts nearly every system in the body.
Below are some simple tips and tricks to help relieve stress.
Parents and caregivers of children with brain tumours may notice and worry about changes in their child’s behaviour or personality. Knowing what changes to expect and why they may occur can help to relieve some of the stress and offer ways to support the child.
Some behaviour or personality changes may be directly related to the brain tumour and its location in the brain. Other changes could be related to the side effects of medications or treatments, such as chemotherapy, radiation, or surgery.
If you have concerns about the impact of the brain tumour or treatments on your child’s behaviour, you should speak to your child’s medical team. The health care professionals may be able to offer suggestions or make changes to medications that can give relief.
Behaviour and personality changes may also occur as a result of the emotions that come with having a brain tumour and the impact that it has on one’s life. This is where parents and caregivers can make the most difference for their children.
Physical symptoms such as nausea, fatigue, headaches, and mobility or sensory challenges may cause children to behave differently and prevent them from enjoying their usual activities. If they are feeling unwell, children may be lethargic and want to spend more time resting or sleeping.
They may become tired during the day or fatigue faster or more frequently than usual. Parents should consider their child’s physical needs and adjust their schedules to allow for rest periods. That being said, for younger children especially it is important to keep structure in the day and maintain usual routines as much as possible to provide a sense of security and familiarity.
Previously enjoyed recreational activities can become a challenge if the child is struggling with mobility, balance, or vision or hearing loss. The child may feel that they can no longer perform as well as they used to, which can cause a blow to their self-confidence.
For children who gain a sense of mastery or positive sense of self from their activities, this can be especially devastating. Parents and caregivers should support children in discovering new activities that they can participate in within their limits, as well as in setting achievable goals. Children can increase their self-esteem by engaging in other hobbies that they are good at and find rewarding.
When children are not able to participate in activities with their peers, they may experience a feeling of being “different” or “lesser”. Children may also feel this way if their bodies have changed because of the brain tumour, such as from hair loss, scarring, or weight gain / weight loss. The feeling of being different from or being unable to keep up with their peers is often very difficult for children and may cause them to withdraw and isolate themselves.
In addition to this, being unable to engage in activities also represents a loss of opportunity to socialize and connect with others. The combination of the two results in less opportunity to practice social skills and develop and maintain relationships with others. Lack of social contact and engagement may lead to feelings of loneliness, which can have a significant impact on mood.
Some children with brain tumours must also spend additional time in isolation due to their health conditions, which can increase potential social/emotional symptoms. Parents and caregivers should support children in making social connections and developing and maintaining their friendships. Additionally, children may find comfort in getting to know other children with brain tumours and/or may find friends that share their new interests and hobbies.
Children may also experience challenges at school due to cognitive symptoms, such as difficulties with attention and concentration, switching between tasks, and memory loss. Peer relationships could also be more challenging if the child has difficulty with taking on the perspectives of others or is having trouble with impulse control. Children who are typically high academic achievers may be disheartened by their new struggles and will require support for their feelings and their academics.
As the person who knows your child the best, you are their best advocate. Parents and caregivers should discuss their child’s strength, challenges, and needs with the educational team as soon as possible so that accommodations can be made to best support the child. Teachers may take the additional step of preparing the other children in the classroom to be inclusive and supportive of the child with the brain tumour.
The school can also be a support for parents in communicating about symptoms, behaviour, peer relationships, and strategies for success. In that regard, our new SUPERKIDS program is a fantastic resource of parents and educators to help children understand the brain tumour experience, and build empathy and understanding for students affected by them.
Lastly, it is important to remember that children have stress too and that the brain tumour diagnosis comes in addition to other potential stressors that the child is already dealing with, such as school, relationships, puberty, and developing their self-image.
Fear, anger, and sadness are big emotions that may be expressed through crying, tantrums, and/or other challenging behaviours. Though it is important to maintain rules and boundaries, adults should communicate to children that all their feelings are valid and that they are not being judged.
Parents and other caring adults should ensure that they regularly offer time and a safe space for children feel comfortable talking about their emotions. Giving honest and age-appropriate information about the brain tumour, medications, and procedures is also helpful in relieving children’s fears and offering empowerment in a helpless situation. Beyond that, exercising, spending time outside, eating nutritious foods, and getting enough sleep can all positively support mood and emotions.
Although the diagnosis of a brain tumour is not easy, the significance of a caring and loving adult should never be underestimated in supporting children’s resilience and ability to cope. However, if there is ever a time when you feel that your child’s behaviour is having a serious or unmanageable impact, please do not hesitate to seek professional advice. Your child’s medical team or educational team are great places to start and can connect you with other resources, such as a social worker or counselor.
“Watchful waiting,” “active monitoring” or “surveillance” are words to describe a monitoring strategy used most often for low-grade types of brain tumours.
If a brain tumour is discovered that’s slow-growing many times active treatment is not the first recommendation. When the doctor says you have a brain tumour and the best thing to do is to watch and wait — instead of describing an active treatment plan, such as surgery, chemotherapy or radiation — it can bring on feelings of fear and anxiety. We’re so used to the idea that certain illnesses need to be immediately treated to avoid further health complications. It would seem strange just to watch and wait for something to happen; however, in some cases, ongoing monitoring is the best strategy.
Active monitoring can have good benefits. If a brain tumour is slow-growing, it may be best to wait until the tumour is at a stage where treatment is more effective. Or, it may be that the brain tumour is monitored and never needs active treatment.
You may want to also consider these active steps if you are in a watch and wait situation after a brain tumour diagnosis:
Watchful waiting should be considered an active strategy, as close monitoring can give you reassurance that your brain tumour is stable and not aggressively growing. If symptoms start to develop while your brain tumour is being monitored, seek immediate medical attention and additional treatment strategies can be discussed.
You can also find more information here.
For many of us, the longest relationship that we have in life is with our sibling. Whether you are the best of friends or the worst of enemies, your sibling will be there to celebrate life’s sweet moments and be there for the rough spots. For some people, this may include a brain tumour diagnosis. Now what?
After your brother or sister has been diagnosed, your view of the world may change. What you once thought could only happen to other people, has now happened to your family. As a result, you may feel a range of emotions that you have never felt before.
Sadly, Mackenzie lost her brother to a brain tumour. She explained her thoughts about their brain tumour journey on her YouTube video series entitled “The Feelings Lab” (see video). She was first sad her brother was in the hospital, then scared that he may die, and finally mad that most of the attention was on her brother and she was feeling left out.
These are just a few of the “big feelings” that are normal to experience when your sibling is diagnosed with a brain tumour. Parents and siblings should do their best to understand these feelings, as well as all the behaviours and emotions that go along with it. This will help make it easier to meet the needs of your family member.
It is easy for me to say that all you have to do is respond with empathy, love, and understanding and that everything will be fine, but I think that is a “tad” too general and I hope that the suggestions below will help.
Take steps to ensure that things stay simple and your daily routine stays ‘normal’ as much as possible. Organize a list, outline what is important to accomplish, and be sure to include activities that bring meaning and happiness to you. It’s hard to support your sibling throughout their journey if you are not first supporting yourself. This isn’t being selfish; it is making sure that you have what you need to get through the ‘tough times’.
Some siblings automatically go into “fix it” mode by starting to research online about various treatments and will show up at the patient’s door with kale smoothies. If this describes your recent behaviour please know that while your sibling might appreciate what you are doing…they might appreciate it more if you would stop. Sometimes you might need to just sit with your sibling and be a “silent witness” to the recent changes and events in their life. You would be amazed at what you can learn about a person you have known your entire life just by asking “hey…tell me how things are going”.
Try not to think about what you want to say next, or begin to speak at those “pauses” that happen naturally in a conversation; try instead to concentrate and comprehend what has been said. Respond with empathy and understanding. This way of “active listening” will allow the necessary space and time for your sibling to unload what they are feeling, as well as validate their innermost thoughts and experiences.
With all that being said, you still need to validate your own feelings and take care of yourself in the process. According to cancer.net, common feelings that younger siblings may experience are feelings of guilt for not being the ‘sick one’, being fearful of death, feelings of jealousy, sadness, and grief. It is a little different if you are older, but not much. You may live far away and as a result, may feel guilty for not feeling ‘disrupted’ from your siblings’ sickness. A sudden role change within the family may also happen, leaving you with new responsibilities. Not feeling in control or feeling overwhelmed is common; a brain tumour diagnosis affects everyone in the family but the effects will vary greatly by age and role.
An easy way to help manage these feelings is to acknowledge them for what they are and take special note that feeling this way does not make you a bad person. We are all human and will experience a range of emotions.
If you are still finding that you are feeling depressed, sad, or anxious, even after talking about it with close friends and family, give yourself permission to get help and seek the advice of a professional. No one needs to do “the journey” alone and having the support of a social worker or psychotherapist will allow you to explore these feelings in a safe environment.
Some simple things that you can do to help your sibling through a brain tumour diagnosis are to help manage medical appointments, find supportive family members and friends, and create a “circle of care” around your sibling so that they feel supported. Ask what can be done to make life a little easier. Meal plan and stock up the freezer with healthy home-cooked meals that can be easily warmed up and served. Join a support group and connect with others who may be experiencing the same difficulties. Share stories and encourage one another to talk about what you are feeling, live and enjoy life day-by-day.
Finally, don’t forget…the greatest gift your parents ever gave you was your siblings.
It’s inevitable — Somewhere along the way, someone will say the wrong thing to you about brain tumours. It happens to practically everyone fighting this disease! Often patients and survivors are confronted with feelings of confusion when responding to something someone has said that they feel was inappropriate, insensitive or offensive. People generally do not mean to offend, but it’s often an unintended consequence that comes up in conversation.
Patients are left debating possible responses when they find themselves in this kind of situation:
The truth is when it comes to brain tumours people just don’t know what to say. Adding to the difficulty and confusion here is that everyone experiencing the brain tumour journey is unique; so what might be appropriate to say to one patient, may turn out to be offensive to another.
There is no real guide on what to say to brain tumour patients. Chronic illnesses, like brain tumours, make people uncomfortable. Many people become nervous, while others are presumptuous. Others may be naïve to the issues patients face. Furthermore, a select few do not have a social/verbal filter and simply come off as jerks! The important thing to remember is that in most cases their intent is not malicious, but that does not mean the damage is not done. Handling difficult conversations resulting from an upsetting remark is one more thing people with a brain tumour need to deal with.
Many patients learn to cope with upsetting and offensive comments in their own way. Some learn to forgive and accept the lack of knowledge in others, choosing to not pursue it any further. However, if you feel the need to discuss with the person how their comments upset you, the following tips could prove to be helpful when looking to approach these situations in a tactful and respectful way.
The time of year has come when many people start to think about the Holiday Season. Getting together with loved ones near and far, sharing a meal, and spending time with family and friends. However, the Holiday Season can be a tough time for a lot of people, especially if you are experiencing changes with your health, including a brain tumour diagnosis.
Your health care team may want you to avoid large gatherings for fear of getting sick or catching the flu, you may be feeling tired and not want to go out of the house, or you may have just completed surgery and feel uncertain about how best to celebrate the season. No doubt if you are new to this journey you will experience a lot of changes.
First and foremost, I think the best “gift” you can give yourself is permission to say “no” during the Holiday Season. If a family member is asking too much of you or if you would rather not attend a large gathering, it is perfectly acceptable to say: “Thank you for the invite or opportunity to help, I appreciate you thinking of me, but I think it is best if I stay home and rest today”. Remember you know yourself best and if you feel that you are taking on too much during the holiday season then, chances are, you are right! Stay home and rest.
What if you find yourself just not wanting to be with people who may not “get” what you are going through? If you are feeling lonely and want to connect this holiday season to those who may understand what you are going through, then reach out and find the right people and share your story.
Right people include your best friend, a trusted member of your church, or a close relative. It must be someone you trust, who you are comfortable to be around (perhaps in your pajamas), who is good at helping, and is good at listening. Most of the time we do not want people to fix our problems, we just want people to listen.
If you find that you are having these lonely feelings in the middle of the night when you cannot sleep, then write them down. You would be amazed at how therapeutic it is to have a journal and write out your thoughts. If this does not appeal to you or you would rather connect to a brain tumour survivor, then I would suggest that you login to our Private Facebook Support Groups. Here you can connect with brain tumour survivors and caregivers across Canada any time of the day, seven days a week, in a way that none of your other friends and family can see.
Finally, exercise! By going for a walk, swim, jog, your body will release endorphins which will help towards relieving stress and making you feel better. Do not underestimate the power of exercise. But please don’t overdo it either. Listen to your body.
There are going to be bad days and that is ok. No one is positive all the time and it is ok to be sad, angry, and frustrated. Let yourself have this time. But if you find that you are feeling this way for extended periods then I would suggest that you reach out and get some help. You can start by contacting Brain Tumour Foundation of Canada as we can provide “tips” on feeling better or direct you to resources in your local area.
When our office is closed for the Holiday Season, please visit Mental Health Canada in order to access online resources as well as a national database of healthcare professionals available by province.
Wishing you all the very best during the Holiday Season!
Rebuilding intimacy and feeling confident in your sexuality while on the brain tumour journey can be a struggle for many. It is common for both women and men to have concerns and questions about sexuality and sexual activity during and after receiving treatment for a brain tumour.
Despite being a normal and important aspect of health, your health care provider may not initiate conversations about sexuality and intimacy. It is helpful for patients to feel comfortable with their health care team and avoid hesitation in discussing their feelings or asking questions about the impact of brain tumour treatments on sexual health.
The following tips may help with rebuilding intimacy, strengthening your relationship with your partner and enhancing your self-confidence as a sexual being.
There are many ways to overcome obstacles and successfully achieve intimacy while on the brain tumour journey. Do not hesitate to ask for help when you need it. You and your partner, together with your healthcare team can evaluate your potential medical, treatment, and psychological factors and develop a plan to help you regain and retain your sexuality, while also enhancing intimacy.
We hope these suggestions will give you the confidence to start the talk with your health care provider and partner today.
