Support Tools

Find helpful advice for living with a brain tumour. Topics include: conversations, stress release, and battling isolation.

Telling people about your brain tumour diagnosis

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:

  • If someone’s reaction upsets you, try to talk with them about it. Explain exactly what type of response is most helpful to you. Letting your family and friends know what to expect from you physically and emotionally can be helpful.
  • Tell your family and friends that you need them to listen to you or that you don’t need them to say anything other than that they care and are there for you. This can help relieve pressure to respond, avoiding seemingly insensitive statements like, “I know just how you feel,” or, “You should try XYZ – it helped cure my friend’s brain tumour.”
  • Know that you don’t have to share every detail of your diagnosis if you don’t want to. Only answer questions you are comfortable with. However, before you speak with family and friends, be sure you are ready for the discussion that this may encourage. You can direct your loved ones to Brain Tumour Foundation of Canada’s website or toll-free support line (1-800-265-5106) should they want more information about brain tumours. Let them know you are still learning about the diagnosis yourself.
  • You may need to remind your family and friends that no one wants to talk about a single aspect of their life all the time. Try to talk about life outside of the brain tumour diagnosis – the latest movies, goings-on at work or your favourite TV show.

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 while living with a brain tumour – is it possible?

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?

  • Acknowledge your strengths: Many people lose hope because they feel like they are not good enough. Make a list of your strengths and things you are proud of. You are good enough and deserve to feel worthwhile!
  • Surround yourself with important people in your life: Spend time with people who make you feel good and supported. It is much easier to feel hopeful when you are surrounded by loved ones rather than being on your own. They can help you cope with negative emotions and support you on your journey.
  • Do things you enjoy: Doing pleasurable activities can make you feel happier and give you a sense of purpose. Trying new activities can also be fun and you can find things you are good at and that bring you joy. This is also a great way to relieve stress and forget about those negative emotions.
  • Record your feelings and thoughts in a journal: Journaling can help relieve stress and reveal the reasons as to why you may feel hopeless. Also, every day, try writing down a few things that make you feel good or that you are grateful for.
  • Talk to someone: Sometimes just talking about your fears, concerns, hopes or anything on your mind can help create a more positive and hopeful attitude. You can try talking to a friend, family member, or mental health professional. Support groups can also be beneficial because you can connect with others who share similar circumstances and emotions to you. Groups are also a great way to learn and share about new tools to create hopefulness in your life.

Mindfulness and brain tumours

What is Mindfulness?

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.

Mindfulness and Brain Tumours

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.

Incorporating Mindfulness into Your Life

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.

Relieving stress

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.

  • Meditate
  • Read a book or magazine
  • Have a cup of tea
  • Make or bake a favourite food
  • Go for a walk
  • Join a support group
  • Gardening
  • Watch a movie
  • Dance
  • Play a board game
  • Take a warm bath
  • Breathe deeply
  • Make a to-do list
  • Talk to someone
  • Exercise
  • Write a letter or card to a friend
  • Listen to relaxing music
  • Draw or paint a picture
  • Work on a puzzle
  • Go window shopping
  • Play an instrument
  • Get a massage
  • Have a good laugh
  • Eat ice cream
  • Begin a new hobby
  • Hug someone you love
  • Write a journal
  • Wear clothes you love
  • Play with a pet
  • Take a short nap
  • Go to the library
  • Attend a concert
  • Go swimming
  • Light a candle
  • Take a walk in the rain
  • Give of yourself to someone
  • Organize a closet
  • Have a picnic in the park
  • Catch up with a family member
  • Hold a baby
  • Allow yourself to cry
  • Live in the moment

“Wait and See” approach after a brain tumour diagnosis

“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:

  • Be physically active — at least 3 days each week
  • Eat healthy foods
  • Reduce stress levels — incorporate yoga or meditation
  • Be aware of any changes in your body — report any new symptoms to your doctor
  • Get your blood tests and scans on schedule — outline your monitoring plan together with your doctor
  • Understand the next steps if active treatment is necessary — being well informed will help with your sense of control over the situation

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.

Your sibling has a brain tumour, now what?

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.

“Say What!?” Handling upsetting conversations while living with a brain tumour

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:

  • Should I let the “offender” know how I really feel?
  • Perhaps I should give them a piece of my mind and set them straight?
  • Is it really worth the effort to enter this conversation further?
  • Maybe I should ignore them altogether?

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.

  1. Pull the person aside
    When in any group, large or small, the offender receiving your response will have face to lose, which will likely make them defensive. It is always best to work through a problem with only the people who are directly involved. Remember, there are a number of logical reasons listed above where people may say something offensive in a delicate and awkward situation.
  2. Determine that it is a good time to talk
    Remember that you both have your own priorities. Respecting each other’s time will make the discussion more productive because you will both be ready to talk, in contrast to being rushed or distracted by other thoughts or responsibilities.
  3. Speak calmly
    If you feel or look physically upset (e.g. on the brink of tears, or hostile enough to be physically violent) excuse yourself from the situation and calm down before addressing the hurtful comment. There are a number of ways to deescalate increased emotions. Engaging in deep breathing exercises, meditation or mindfulness are just a few examples of techniques that can help calm unpleasant thoughts.
  4. Do not paraphrase
    Be sure to tell them exactly what it was they said to offend you. If you say something to the effect of “I think it’s horrible you think I’m poisoning myself with my treatment” in response to a statement like “chemotherapy does more harm than good with all those side effects,” you are going to appear as if you are not listening and/or jumping to conclusions, which can make the situation more hostile.
  5. Be brief, but explicit
    No one wants a lengthy lecture in response to an inconsiderate remark they were not aware would offend you. Simply inform the person what they said made you upset; and if you want to explain why, keep it brief. Make it short and to the point, but without being curt. Phrases like “it’s an issue that hits close to home for me” should be reason enough for the person to respect your reaction.
  6. Be polite
    Avoid telling the person they sounded like a jerk. As a matter of fact, avoid all profanity if possible. In addition to speaking calmly, it is important to convey calm behaviour. Try not to use a sarcastic tone or display antagonistic body language (e.g. pointing, a hand on hip or crossed arms). Be open to the conversation because that’s what it is: a conversation – aimed to rectify a misunderstanding.
  7. Use “I” statements
    Beginning every sentence with “you” is extremely accusatory, even if you are only stating what appears to be facts to you. A more productive way to address the issue is by saying “I was uncomfortable with a remark you made earlier”. By using “I” statements, you establish that it is your discomfort you want to address, even though the other person is the one who created your discomfort. Be assertive and avoid attempting to neutralize the remark, but also do not incite defensiveness by accusing him or her of hurting you – remember that the other person may be unaware that your feelings were hurt. The remark was likely thoughtless or inconsiderate, and in most cases, it was not meant as a personal attack against you.
  8. Do not try to extract an apology
    If the person is sorry, they will tell you. It can be very disappointing waiting around for an apology if it is not coming. The purpose of telling the other person you were offended was merely to inform them; they are not indebted to you. Now that you have made your discomfort clear, be aware of any changes in the person’s behaviour in future interactions. If they continue to make you upset or uncomfortable with similar comments, you may want to refrain from socializing with this person in the future – or at least while on the brain tumour journey.

Battling the feeling of isolation during the Holidays

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!

Sexuality and intimacy while living with a brain tumour

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.

  • Allow yourself time
    You and your partner will need time to adjust to the physical and emotional changes a brain tumour brings into your life. Patience is key as you adjust to the side effects of treatments (e.g. stress, pain, depression or fatigue), which can lower your desire for sexual activity. Also, give yourself time to accept and become comfortable with changes to your body.
  • Communicate with your partnerCommunication is an important tool for building intimacy, especially when facing a life-changing health concern like a brain tumour. Common anxieties around resuming sexual activity after brain tumour treatment include: pain during sex, the inability to perform, or that your partner will no longer find you attractive. Additionally, your partner may also have anxiety about putting pressure on you by initiating sexual activity. Talking openly about your feelings allows you and your partner to understand each other’s needs and preferences.
  • Make adjustments
    After brain tumour treatment, some sexual positions may become painful and certain activities that were once pleasurable may not be anymore. Trying new positions or forms of sexual activity may help alleviate discomfort and allow you to discover new pleasures. Guide your partner and explore your desires together.
  • Validate your feelings
    It is normal for you and your partner to have your own questions and concerns about sexuality and intimacy. It is important to listen to each other’s feelings and point of view without interrupting or being dismissive. Try not to take things personally and empathize with your partner. Avoid vague statements like “Everything is going to be great.” Instead use supportive language like “Although I can’t fix it, I am here for you.”, or “It must be frustrating adjusting to all these changes.”
  • Get reacquainted with each other
    The relationship you share with your partner may have become disconnected over the course of the brain tumour journey. Emotional closeness and companionship are important and can help rebuild physical intimacy as well. You may choose to start rebuilding the relationship slowly by cuddling, kissing and touching. Find intimacy in the small pleasures like touch, holding hands and simply relaxing together. Making a point to say, “I love you” to your partner each day further strengthens your connection to one another.
  • Experiment with alternative forms of intimacy
    Even if sexual intercourse is not possible, you can still maintain intimacy through loving affection and touch. “Setting the mood” can facilitate an intimate environment such as dimming the lights and putting on romantic music. Treat yourselves by getting creative with lingerie or giving your partner a massage. Focus on the sensual, rather than the sexual aspects. Within this mind frame, regular activities like hugging, going for a walk, watching a movie, bathing or reading together can create intimacy.
  • Set aside special time for intimacy
    Levels of sexual desire often vary during brain tumour treatment. Planning sexual activity for times that your energy levels are highest may be most helpful. For many, a partner may have moved into a caregiving role, making it difficult to feel sexy around each other. Attempt to clearly separate time for caregiving and intimate time together as a couple; as this may enhance your sexual confidence.
  • Enhance your self-image
    Brain tumour treatment can affect your body image, feelings of attractiveness and desirability. Simple changes like a new hairstyle, wig, makeup, or clothing may help you feel better about appearance. Your doctor may recommend also medical options to help with changes in appearance and hormonal imbalances. It is important to remember changes or deficits caused by treatment do not make you less feminine/masculine.
  • Communicate with your health care provider
    Many doctors are uncomfortable initiating discussions around your sex life during brain tumour treatment unless you ask. Although it can be an uncomfortable discussion, it is a necessary one to have. Your doctor can clear up concerns you may have, including the impact of chemotherapy, radiation and surgery on sexual function. It is also important to openly inform your doctor about any sexual dysfunction you experience throughout treatment so that they may continue to help you grow on the journey.
  • Get physically and mentally healthy
    Regular exercise and good nutrition can help stimulate sexual desire by increasing energy and improving your mood. Talk to your doctor or health care provider about what type of exercise is best for you. Often depression associated with a serious health issue like a brain tumour can lead to lost interest in sex. If you think you may be depressed, talk with your doctor and adopt relaxation techniques to reduce stress anxiety and muscle tension.
  • Seek professional help
    For many couples, a trained professional (such as a counsellor or therapist) can help facilitate communication. You may find value in talking with a social worker, nurse, chaplain or friend. In addition, support groups can give you both a place to voice your fears and concerns with others in a similar situation. By talking openly about issues with trusted support systems, you come up with new ways to build intimacy in your relationship.
  • Work with your partner as a team
    During brain tumour treatment, it is especially important to work together with your partner. The closeness and companionship that comes from teamwork can help you feel more secure and in control. By communicating effectively and making an effort to maintain intimacy, your relationship can flourish in the face of serious illness.

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.

Contact us

Need more support tips that are not listed here? Our staff can help. Call us. 1-800-265-5106 (Mon-Fri 8:30-4:30 pm EST). You are not alone.

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