Navigating the Emotional Rollercoaster: Coping with the Impactsof a Myeloma Diagnosis on your Mental Health and Wellbeing

Receiving a myeloma diagnosis can be devastating. Coping with the emotional toll is essential. Understanding the impact on well-being and learning coping strategies are crucial. There is no right way to feel. Emotions can vary from positive to sad, and all are natural responses. Emotions may include shock, denial, hope, fear, sadness, anger, and more. Feeling emotions without understanding why is a perfectly normal part of being human. Don't be surprised; it happens to all of us!

Living with myeloma can impact various aspects of your life unexpectedly. Being aware of emotional changes can help you navigate challenges. Those with myeloma may lose their sense of identity as the focus shifts to treatments, leading to a decline in hobbies. Loss of independence may occur with increased reliance on others for support. Financial worries may arise from reduced income and an uncertain future. Plan for loved ones' needs posthumously.

While the impact of myeloma can vary greatly, individuals can find support and guidance to navigate the challenges they may be experiencing. While some adjustments may be more difficult than others, some challenges may be temporary.

Treatment and Monitoring

Being monitored and treated for myeloma can significantly impact your overall well-being. The following are examples of how you may be affected during each stage after diagnosis.

Diagnosis and Pre-Treatment

Receiving a myeloma diagnosis can be a daunting experience, especially if you were not familiar with the condition before. This can add to the uncertainty and fear surrounding the situation. It is important to remember that everyone responds differently to a cancer diagnosis, and it is normal to experience a range of emotions throughout the process. You may find yourself feeling a certain way at one moment, only to revisit previous emotions at a later time.

During Therapy

During myeloma treatment, individuals may experience mood swings due to physical side effects and demanding schedules. Feelings of anxiety may arise before appointments and while receiving test results, leading to added stress and uncertainty about the effectiveness of the treatment. Disappointment and frustration may occur if test results do not meet expectations, while positive results can bring encouragement.

During treatment, individuals may rely more on their partner, family, or friends for physical and emotional support. It is common to experience feelings of guilt due to this increased dependence on others.

Achieving Treatment Milestones

When myeloma treatment achieves a Complete Response, it brings joy and relief. However, post-treatment, suppressed emotions may resurface, especially if diagnosis and treatment happen quickly. Concerns about myeloma returning can cause anxiety, impacting emotional well-being and support expectations after treatment.

Dealing with the long-term physical and emotional changes from myeloma treatment may go unnoticed by those around you, as they may not fully grasp the relapsing and remitting nature of the disease. Some individuals may have assumed you were cured after your initial treatment, leading to misplaced expectations and potential strain in your relationships.

Openly expressing your feelings and experiences can promote understanding and empathy from your loved ones, fostering stronger connections and support during this challenging time.

Relapse and Treatment Resistance

Discovering a relapse or unresponsiveness to treatment can be discouraging. It's normal to feel disappointment, frustration, and anger. Coping with the return of myeloma and a shorter remission brings concerns about future plans and enduring more medical procedures, tests, and side effects.

It's common to hide stress from loved ones, causing challenging emotions. Worries about family, work, finances, or vulnerability add pressure. Several myeloma treatments exist, and your doctor will help. With time, support, and care, negativity can shift to hope.

Complications and side effects from myeloma treatment affect emotional and mental well-being. They lead to tiredness, frustration, and sadness, impacting coping abilities. Common effects include pain, insomnia, drowsiness, fatigue, illness risk, bone fractures, and appearance changes. These affect relationships, mood, and daily life, leading to irritability, depression, decreased sociability, and physical limitations. Seek support to manage these challenges effectively.

Steroids in Myeloma Treatment

Steroids, such as dexamethasone and prednisolone, play a crucial role in myeloma treatment by enhancing patients' response to other therapies. However, it is essential to be aware of the potential mood changes that can occur as a side effect of steroid use. These mood disturbances, which may include mood swings, anxiety, tearfulness, agitation, and sleep disruption, can be particularly pronounced at higher doses and when transitioning between days of steroid treatment.

Living with these effects can be difficult, with some patients experiencing noticeable differences in their mood on "Dex days." If you notice any changes in your mood, it is essential to discuss them with your healthcare provider. They can adjust your steroid dosage if necessary and provide support. It may also be helpful to communicate with loved ones about how steroid treatment is affecting your mood.

The Physical Effects of Emotions

The connection between your emotions and physical well-being is significant. Just as physical symptoms and side effects can impact your emotional state, your emotional well-being can also affect your physical health. Conditions like stress, depression, and anxiety can manifest as physical symptoms, including sleep disturbances, loss of appetite, fatigue, lack of interest in sex, and skin problems. Managing your emotions can help alleviate these physical symptoms. Your healthcare team is there to address your physical and emotional needs, so communicate any emotional concerns to receive the most appropriate care possible.

Recognizing Depression

Experiencing sadness and despair after a myeloma diagnosis is common. Be mindful of changes in behavior and seek help. Depression symptoms vary from mild to severe. Recognize signs and seek support for persistent sadness and emptiness, fatigue, disrupted sleep, indecisiveness, joylessness, social withdrawal, loss of interest in hobbies, and thoughts of self-harm.

Identifying signs of depression in ourselves can be challenging, and often, it is those around us who first notice these signs. Bringing up the topic of depression can be difficult for both parties involved. Maintaining open and honest communication with loved ones about your feelings is crucial. Even if you feel unheard or withdrawn, persisting and seeking the support you need is essential. If you recognize signs of depression, reach out to your healthcare team, who can provide referrals to additional services. Take proactive steps to address your depression and consider utilizing resources such as charity helplines and online forums for extra support.

Recognize and acknowledge emotions during the cancer journey, from diagnosis to remission. Emotions fluctuate based on circumstances. Consider your preferred support—friends, family, or a counselor. Access available services for support. Reach out to your GP, Myeloma Infoline, or cancer support centers for assistance.

Self-Care Tips for Coping with Emotions

Incorporating self-care practices is essential for effectively managing your emotions. The following strategies can assist you in dealing with your feelings. It is vital to continually engage in activities that bring joy and fulfillment to your life. Participating in hobbies, connecting with loved ones, and nurturing your spirituality can significantly impact your overall well-being. You can enhance your emotional state by prioritizing what holds significance for you and persisting in meaningful pursuits. Aim to schedule a pleasurable activity each day to support your emotional well-being.

Discussions

Conversations with friends and family members about your emotions can enhance their comprehension of your feelings and their impact on your relationships. Additionally, considering counseling as a form of communication with an unbiased party may be preferable for some individuals. Addressing issues and expressing emotions can play a significant role in enhancing relationships and fostering a positive mood.

Healthy Lifestyle Habits

Following a nutritious diet and staying active through regular exercise can enhance your overall well-being and improve your mood. Despite the challenges of myeloma and its treatment, a balanced diet can help alleviate symptoms and improve your well-being. Engaging in gentle physical activity can also be an effective means of reducing stress and tension.

Practice Mindfulness Through Meditation

Mindfulness and meditation involve focusing on the present moment and being conscious of one's thoughts and emotions. These practices are beneficial in promoting a sense of peace and reducing feelings of anxiety.

Releasing and Recording Emotions

It is important to release your emotions rather than suppress them, as this can positively impact your mental health. Engaging in creative activities such as painting, drawing, or playing music, or simply allowing yourself to cry or release tension by throwing a pillow, can be therapeutic. By channeling your negative emotions into something productive, you will likely experience decreased stress levels.

Additionally, keeping a journal to record your feelings can be beneficial. Writing down your emotions can help you process and make sense of them. This practice may benefit individuals who find it challenging to verbalize their emotions.

By documenting your feelings, you may identify patterns or triggers contributing to specific emotional states, such as feeling irritable when tired or anxious before appointments. Once these patterns are recognized, you can take proactive steps to address them, such as taking a brief nap when fatigued or scheduling enjoyable activities after appointments.

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Finding the Silver Lining

Despite the challenges that come with a myeloma diagnosis, it can also lead to positive changes in your life. By being compelled to pause and address new responsibilities and concerns, you may appreciate different aspects of life and adapt your priorities. Following diagnosis, many patients experience a shift in perspective and opt to dedicate more time to loved ones, interests, and activities that bring them happiness.

Remember, you are not alone in this journey. Lean on your loved ones for support, communicate openly about your feelings, and seek professional help if you struggle to cope. By acknowledging and addressing the emotional challenges that come with a myeloma diagnosis, you can empower yourself to face the rollercoaster of emotions with resilience and strength.

In conclusion, navigating the emotional rollercoaster of a myeloma diagnosis requires self-awareness, self-care, and reaching out for support when needed. By understanding the impact on your well-being, practicing coping strategies, and prioritizing your emotional health, you can navigate this challenging journey with courage and grace.

Tackling Side Effects on the Multiple Myeloma Journey

In the next few blogs, we will explore eight aspects of living with multiple myeloma: symptoms and side effects, moods and emotions, relationships, sex and intimacy, fertility, finances, travel, and living alone.

Symptoms and Side Effects

Bone pain is a common issue for myeloma patients. It is caused by myeloma bone disease, where cancer cells in the bone marrow affect the surrounding bone, leading to faster breakdown than repair. This results in pain and weakened, easily fractured bones in areas like the back, hips, and rib cage. The severity of myeloma bone disease varies among patients, highlighting the importance of managing this aspect of the condition for improved quality of life.

For myeloma patients, treatment often includes bisphosphonates to prevent further bone damage and painkillers to manage discomfort. The disease may limit activities like high-impact exercise or contact sports, leading to a sense of loss for patients. However, exploring new exercises or hobbies is essential to staying active and maintaining a fulfilling lifestyle.

The pain itself can interrupt your normal activities and prevent you from feeling able to live as you normally would.

Peripheral neuropathy is a common side effect of certain medications like thalidomide and bortezomib, often experienced by myeloma patients. It involves damage to the nerves controlling sensation, leading to symptoms like altered sensation, tingling, numbness, and pain in the hands and feet. Symptoms can worsen over time, so it's crucial to notify your healthcare team as soon as they appear for early diagnosis and management.

Managing pain can be challenging, but there are several tips to help. It's important to take painkillers regularly as prescribed and before the pain becomes severe. If you're not getting relief from your pain, don't hesitate to talk to your healthcare team about fine-tuning your medication. Avoid NSAIDs like ibuprofen to protect your kidneys. Be honest with your healthcare team about your pain and describe it accurately to help find the best treatment plan. Keeping a pain diary helps manage your pain effectively. Learn relaxation, meditation, or visualization techniques. A combination of these can help relieve pain. You must incorporate these practices into your routine regularly for optimal results.

To manage pain effectively, it is recommended to regularly practice relaxation, meditation, and visualization techniques, or a combination of these, to maximize benefits. It is also essential to reduce anxiety levels, as stress can worsen pain. Seeking support through talking, counseling, or complementary therapies can be helpful. When considering massage for pain relief, choose a gentle therapist and communicate your situation to them to avoid further discomfort or harm. Overall, prioritizing relaxation and stress reduction techniques can significantly improve pain management.

To distract yourself from pain, try watching TV, listening to music, or chatting with a friend. Heat and cold, like hot water bottles and ice packs, can temporarily relieve pain. Remember to wrap them in a towel before applying them to your skin. To alleviate discomfort, sit or lie in a comfortable position. Special V-shaped pillows can help when sitting in bed.

If your pain is not being controlled by your prescribed painkillers or with the addition of any of the above, ask your healthcare team for a referral to a pain specialist who will be able to adjust your painkillers for a better response.

Fatigue is a common issue for myeloma patients, affecting over 90% of individuals. It involves extreme tiredness, weakness, and difficulty concentrating. Other symptoms include mood swings, dizziness, and changes in sleep patterns. Living with fatigue can impact the quality of life and relationships. Loss of intimacy and appetite may also occur. Patients need to seek support and strategies to manage fatigue effectively.

Fatigue in myeloma patients can be caused or worsened by various factors such as anemia, poor nutrition, pain, medications, anxiety, and depression. There is a strong connection between fatigue, chronic pain, and depression, which can impact daily life and relationships. These negative emotions can drain energy and lead to isolation and fear. During treatment, fatigue is common, and it can be most challenging to cope with after treatment ends when things are expected to return to normal. Fatigue can prevent individuals from doing activities they enjoy and cause distress, but coping strategies can help manage its effects.

It is crucial to maintain a well-balanced diet and consult a dietitian to combat fatigue, if necessary. Effectively managing pain and prioritizing sleep by following a routine can also help. Trying complementary therapies, engaging in gentle exercise daily, and keeping a diary to monitor energy levels are recommended strategies. It is important to pace oneself, take rest periods during the day, and seek guidance from a physiotherapist for suitable exercises. These tips can help myeloma patients manage their fatigue effectively.

Gastrointestinal disturbances, such as nausea/vomiting, diarrhea, and constipation, can be common side effects of myeloma treatments and are unpleasant to deal with. If you experience these symptoms, it is essential to communicate with your healthcare team, as medications can be prescribed to alleviate them. Additionally, there are self-help tips available to help manage these gastrointestinal issues.

Nausea and vomiting can be common and upsetting symptoms for many myeloma patients, but there are ways to manage them. Anti-emetic medications can be prescribed to help prevent and control these symptoms. It is essential to take these medications regularly and not wait until you feel sick, as they may not be as effective. If your prescribed anti-emetics are not working, don't hesitate to ask your doctor for a different option. Remember to inform your doctor if you are vomiting, as it can lead to complications if left untreated. Dehydration can be a serious concern.

If you feel sick before your myeloma treatment, try taking anti-sickness medication beforehand. Strong smells, like food or hospital scents, can trigger nausea, so avoid them or use light perfume on a handkerchief. Consider using soothing aromatherapy scents like lavender to help with nausea, and consult a complementary therapist for recommendations.

If you are experiencing vomiting, it is crucial to continue drinking fluids to prevent dehydration. To give your stomach time to rest after vomiting, slowly sip on still or sparkling water or fizzy drinks. In severe cases of vomiting, special fluids can be obtained from your GP or a pharmacy to replace lost fluids. Remember to stay hydrated to help your body recover from vomiting.

If you are experiencing diarrhea, staying hydrated by drinking plenty of water and clear fluids is important. Avoid caffeine and alcohol, and stick to small, light meals while avoiding fatty or spicy foods. Comfortable clothing and soft toilet paper can also help. If diarrhea persists for more than a few days, consult your healthcare team for potential treatment options. Diarrhea while on lenalidomide treatment may be due to bile acid malabsorption, which can be managed with medication prescribed by your doctor.

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Constipation means difficulty going to the bathroom, resulting in less frequent and painful bowel movements. Left untreated, it can cause issues for an extended period and even lead to runny diarrhea. To deal with constipation, drink plenty of water, increase fiber intake, avoid caffeine and alcohol, and exercise regularly. Natural remedies like flaxseed or fig syrup can also help, but consult your doctor before trying them. Only take laxatives if prescribed by your doctor. These tips can help alleviate constipation and promote regular bowel movements.

Hair loss is a common side effect of chemotherapy, but with myeloma treatments, hair thinning is more likely than complete loss. High-dose chemotherapy used in stem cell transplantation may lead to hair loss. Hair loss can be emotional and impact self-image. Talking to a nurse about feelings and management strategies is recommended.

If you lose your hair during treatment, don't worry; it will typically grow back once treatment ends. Initially, the new hair may be very fine, but you can expect a full head of hair in 3–6 months. Your new hair may be curlier, finer, or a different color. Cutting your hair short or shaving it before treatment can help you feel more in control and improve your appearance during hair loss and regrowth. Additionally, wearing hats, headscarves, or wigs can help keep you warm and comfortable during this time.

If you are undergoing treatment at a hospital and are considering getting a wig, ask your nurse about their wig-fitting service. Your hairdresser can help style your wig to your liking. Getting a wig in the hospital may be more accessible, so don't hesitate to inquire about it.

If cancer treatment causes you to lose your eyelashes and eyebrows, don't worry—you can use makeup like eyebrow pencils and eyeliner or false eyelashes to enhance your natural features. Cancer support groups may offer workshops to help you learn application techniques.

Image by Branislav

Chemotherapy can cause mucositis, resulting in a sore and inflamed mouth. This can make eating difficult, but your doctor can provide treatment, such as mouthwash, to help prevent ulcers. It is important to gently clean your teeth with a soft toothbrush and try ice cubes or lollies to minimize the risk of mucositis during treatment. Tips for when you have mucositis:

• Avoid food that sticks to the roof of your mouth, such as chocolate, peanut butter, or pastry.

• Avoid spicy, salty, or tangy foods.

• Avoid mouthwashes that contain alcohol.

• Drink cold drinks.

• Moisten your food with gravy or sauces.

• Allow food or drinks to cool slightly before consuming.

• Drink through a straw.

• Suck on ice cubes or ice lollies.

• Try using boiled sweets or chewing gum to stimulate saliva production.

Treatment can sometimes cause changes in your sense of taste, making foods taste overly sweet, salty, or metallic, especially after HDT-SCT. However, this should return to normal once treatment is finished. Tips for when your sense of taste changes:

• Try different drinks and foods that you might not usually like to find something that tastes good.

• Try not to worry if you can't face eating three meals a day—snack throughout the day instead or eat little and often.

• Season your food with spices and herbs.

• Marinate food before cooking and use intensely flavored sauces.

• Try using plastic cutlery if your food tastes metallic.

• Try drinking sugar-free flavored drinks if water is unappealing.

• Rinse your mouth before and after eating.

Image by Yuliia Chyzhevska

If you experience a loss of appetite during your myeloma treatment, remember to eat when you can and try to have small, frequent meals. Plan meals around when you typically feel most hungry. Stay hydrated, even on days when you don't feel like eating. If your appetite doesn't improve after a couple of weeks or if you lose a lot of weight, talk to your healthcare team. They can connect you with a dietitian who can provide guidance on eating a balanced diet and recommend high-calorie and high-nutrient foods and drinks.

Myeloma patients are more susceptible to germs due to the low white blood cell count caused by the disease and its treatments. It is crucial for patients, especially those who have recently undergone high-dose therapy and stem cell transplants or are neutropenic, to make changes to reduce their risk of infections. Signs of infections to watch out for include a raised temperature, feeling unwell, shivering, rash, cough or sore throat, diarrhea, and pain or redness around wounds or central lines. Staying vigilant and taking precautions can help prevent severe complications in myeloma patients.

Seek medical attention promptly if you start showing signs of illness, especially if you feel unwell or are shivering. Contact your doctor or go to the hospital immediately, as early treatment is crucial. Antibiotics may be prescribed to treat the illness, but if it doesn't improve, you might need IV antibiotics in a hospital setting. It's essential to act quickly to ensure you receive the proper care and treatment for your condition. To avoid getting ill:

• Remember to keep your hands clean by washing them with warm, soapy water, especially after using the bathroom or preparing food. It's an easy way to stay healthy and prevent the spread of germs!

• Remember to always keep hand-sanitizing gel handy when you're out and about, and try to steer clear of crowded places to stay safe and healthy!

• If you or someone in your household feels unwell, please postpone your visit. Thank you for helping us keep everyone safe and healthy!

• Remember to check that all your food is fresh, wash your fruits well, and cook your meat thoroughly.

• Consult your healthcare team for advice on staying healthy, especially if you have a low white blood cell count.