Tag Archive for: grief

What Is One Thing (Or More) You’d Like to Say to a Newly Diagnosed Breast Cancer Patient?

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As we enter the final days of Breast Cancer Awareness Month, I am remembering a time over a decade ago, when immersed in a sea of pink ribbons I felt part of something. I had been diagnosed with breast cancer as the month of September turned into October and surrounded by Breast Cancer Awareness Month activities I felt supported as a newly diagnosed patient.

But as the last days of October faded and the pink ribbon wearers began to disappear, I was left wearing the everyday reality of a disease that I still felt ill-equipped to bear. I still feel a sense of sadness today at all that I had yet to learn and go through on my journey with breast cancer.  I often wonder how much easier that path might have been had I known then what I know now.

One thing I know for sure is that those of us who have traveled this road can ease the way for others who are just starting out. In this spirit, I reached out to the breast cancer community to ask them what advice they would give to a newly diagnosed person with breast cancer.  You will find their responses below alongside some of my own.

Find Support

Cancer research advocate and 20+ year breast cancer survivor, Lisa DeFerrari [1] emphasizes the important role of support. “Don’t be afraid to reach out for support early on,” she advises. “I realize that many of us are very independent-minded – I certainly am,” she says, “but breast cancer and learning how to deal with it are complicated and there are lots of great resources out there. Reaching out for information and support can also be a way to recover from the sense of loss of control that often comes with a cancer diagnosis.”

To this cancer blogger, Megan-Claire Chase [2] adds, “let go of your pride. Don’t be afraid to start a GoFundMe. You’d be amazed by people’s generosity to pay your medical bills and regular bills.”

Ask Questions

“Ask questions and push for information,” recommends Julia [3] creator of #BCCWW breast cancer Twitter chat. “For people living with long term conditions and disabilities before breast cancer it is valid to worry about the consequences of cancer and the risks of treatment on your wider health,” she adds.  “Don’t let anyone invalidate those concerns with ‘but cancer’  – it’s your body and health,  it’s you that has to bear the possible risks and potential consequences of both.   So make sure they’re centered to the degree you need them to be.”

Diagnosed with late-stage invasive lobular breast cancer in 2015, Siobhan Freeney [4] who campaigns for essential breast screening and early detection of breast cancer for women with dense breasts, urges women to ask about their breast density even after a diagnosis, as this is important information because It will influence their surveillance imaging. Siobhan highlights the fact that “many women diagnosed with breast cancer don’t know anything about dense breasts and associated risk factors.

Be Your Own Advocate

Although you may be reeling from the news of a cancer diagnosis, it’s important that you learn as much as you can about your diagnosis and what treatment options are available.  Siobhan advises taking time to absorb what’s just happened and then take notes at meetings and consultations. “Find out as much as you can about your particular cancer and speak up,” she recommends. “Ask for MRI, PET, CT any baseline scans available to you. Find reliable, evidence-based information.”

Jo Taylor [5] founder of After Breast Cancer Diagnosis stresses the need to be your own advocate. “Be your own advocate – try to understand what type of breast cancer it is and ask questions and research it. Always ask for copies of scans and details. Then find your community who support you and you can support them.”

Employment Advice

Megan-Claire offers this advice for those who are working full time at the time of diagnosis “Talk with your manager or direct supervisor and work out a plan where you can work from home (if not already due to COVID) and work out a schedule for coverage when your chemo treatment starts.” She also offers two practical tips when undergoing chemotherapy: “I suggest getting your chemo on Fridays so you’ll have the weekend to rest,” and “ask your oncologist for a temporary handicap sign. It helped me immensely due to deep fatigue.”

Tackle Fatigue

As Megan-Claire mentions, fatigue is an issue that cancer patients face. We all know what it’s like to feel tired — physically, mentally, and emotionally, but usually, after some relaxation and a good night’s sleep, we are ready to take on the world again. When you have cancer, though, rest often isn’t enough. You experience persistent, whole-body exhaustion. Even after adequate sleep or rest, you will still feel tired and unable to do the normal, everyday activities you did before with ease. A lot of cancer patients don’t report fatigue to their doctors because they think that nothing can be done about it. In fact, there are things that can be done to alleviate the debilitating effects of cancer-related fatigue. If left untreated, fatigue may lead to depression and profoundly diminish your quality of life, so it’s important that you speak to your doctor if fatigue is an issue for you [6].

Journal Your Thoughts

It is amazing how quickly you forget what you thought and felt in those early days of diagnosis and treatment. Megan-Claire recommends keeping a journal to note down your thoughts. “It could just be a sentence or two and either save them on your laptop or in a journal,” she recommends. “There was a lot I forgot about and was glad I had my little notes from the start of treatment to look back on.”

Honor Your Grief

One of the things you might like to journal about is the feelings of loss and grief you will experience with a cancer diagnosis. While many people think of grief only as a reaction to bereavement, we can feel grief after any kind of loss. Some of our losses are tangible, for example losing our hair, and some are more intangible, such as the loss of trust in our bodies. Coping with the losses associated with cancer is challenging. Grief brings many emotions with it. Patients, as well as caregivers and family members, may go through emotions of anger, denial, and sadness [7].

Respect the diagnosis; question the prognosis

This final piece of advice comes from Betsy Mullen [8]. “Respect the diagnosis; question the prognosis,” she says. “I was diagnosed with a grade III triple-negative breast cancer and given 2-3 years to live at best. That was 29 years ago.”

To Wrap Up

Being diagnosed with cancer is a life-changing event. Know that you will go through many emotions and experiences on the roller-coaster ride of diagnosis, treatment and beyond.  Each person will experience the journey in their own way.  While there’s no right or way to go through the experience, it’s important as mentioned above that you find support. Reach out at each step of the way and find someone who understands what you are going through and can offer you the support you need.

Notes

[1] Lisa DeFerrari Finding Great Support After a Cancer Diagnosis

[2] Megan-Claire Chase Life On The Cancer Train

[3] BCCWW https://twitter.com/bccww

[4] Siobhan Freeney https://beingdense.com

[5] Jo Taylor abcdiagnosis.co.uk

[6] How To Cope With Cancer-Related Fatigue

[7] Grief, Loss, and the Cancer Experience

[8] Betsy Mullen https://twitter.com/betsymullen

How to Make the Home a Safe Space for Grief

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When a loved one passes away after a battle with cancer, the grief can be nearly impossible to face. Although people react differently to grief, shock, numbness, and sadness are common feelings among those struggling to cope.

As you work through your grief, it’ll be important to have a space where you can feel comfortable and at ease. If you’re like most people, that space will be in the comfort of your own home. Keep reading for some tips on how to make your home a safe space for grief.

Keep Sentimental Items Close

While grieving, you may begin to fear that you’ll forget important details about the person you’ve lost.

Keeping sentimental items that remind you of your loved one nearby can be a useful coping mechanism during this time. These items may be photographs, trinkets, or articles of clothing that promote positive memories and help you feel close.

However, keep in mind that you don’t want to hold on to unnecessary items just because they may have belonged to your loved one. As you decide which sentimental items you’d like to keep, this is also a good time to think about what you can give away. Donating these things is a great option, especially if you’d like to see certain things continue to be put to good use.

Clear Clutter

When dealing with grief, the last thing you want is to feel stressed too. A cluttered home will not only make your space less functional, but it’ll make things more stressful as well.

Even though it might feel like a chore you want to put on the back burner, cleaning your home is the perfect opportunity for you to be productive and shift your focus for a few hours. Once your home is free of clutter you’ll find yourself feeling more relaxed and may notice that you’re able to even sleep better.

Set Boundaries with Guests

When someone close to you passes, other people in your life will probably want to stop by and check on you. Of course, these people mean well, but constantly having guests can get overwhelming. It’s okay to let people know when you’re not in the mood for company.

On the other hand though, it’s important that you find the right balance between solitude and socializing so you don’t isolate yourself.

Let Natural Light Flow Through Your Home

You may think closing yourself in the house all day will help you through your grief, but this could actually make it worse. Instead, you should let as much natural light flow through your home as possible. Research has shown that exposure to natural light can have a positive impact on moods and can help reduce depression and sadness.

Play Music for Your Loved One Throughout the House

This may seem like an odd piece of advice, but research has shown that listening to music can help people deal with grief. One study suggests creating a playlist for your loved one and picking songs meaningful songs that remind you of the person.

Getting Back in the Kitchen

Most of us have an emotional response to food. That’s why friends and family will bring food to their loved ones in bereavement. Plus, cooking for someone in mourning takes one more thing off their plate.

However, cooking may be the ticket to getting back into a semi-normal routine. The act of providing a warm meal to yourself and your family could be rewarding in itself. Cooking meals your loved one had especially liked could be a way to feel somewhat connected still. You might even discover new foods and the kitchen can start to become a source of excitement and it could spark curiosity even in a dark time of your life.

As you grieve, it’s important to remember that the process is a journey that will have its fair share of ups and downs. With self care, patience, and a strong support system you can gather the strength you’ll need to carry on.

Grief, Loss, and the Cancer Experience

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“In a society which is much more inclined to help you hide your pain rather than to grow through it, is necessary to make a very conscious effort to mourn.” -Henri Nouwen

Grief is a natural response to loss. While many people think of grief only as a reaction to bereavement, we can feel grief after any kind of loss. When we step back and look at the cancer experience we see that grief and loss are a fundamental part it.  Some of our losses are tangible, for example losing our hair, and some are more intangible, such as the loss of trust in our bodies.

Coping with the losses associated with cancer is challenging.  Grief brings many emotions with it. Patients as well as caregivers and family members may go through emotions of anger, denial, and sadness.  While there is no right or wrong way to grieve, there are healthy ways to cope with the pain and sadness that, in time, can help you come to terms with your loss, find new meaning, and move on with your life. 

10 Ways to Cope With Cancer Grief

1. Acknowledge Your Feelings

Attempts at avoiding or ignoring difficult feelings hinder the healing process. Nancy Stordahl, who writes about living with breast cancer on her blog, Nancy’s Point, says we need to “grieve for things we’ve lost to cancer. We aren’t the same people in some ways post diagnosis. We have lost parts of ourselves (figuratively and literally). We need to grieve for people, things and pieces of ourselves we have lost. Too many times we aren’t given the time or ‘permission’ to do so.” By facing our losses and feeling the pain we allow grief to take its natural course and can emerge the other side with greater self-awareness and acceptance.

2. Tune Into What You Are Feeling

It is helpful to get into the habit of checking in with your feelings.  Take a moment to stop and be still. Breathe deeply. Now ask yourself what you are truly feeling. Grief? Guilt? Sadness? Anger? Whatever arises, see if you can just be with the feeling and feel it fully without judging your thoughts or emotions. Is there a physical discomfort associated with this feeling? For example, when you’re anxious or afraid, you may notice a tightness in your chest. Can you soften and relax those areas of tension in your body?  You may find the intensity of your feeling lessens as you do this exercise. If the emotion deepens or adds to your distress, discontinue the exercise and try again later.

3. Write Down Your Feelings

If you feel stuck when sitting with your emotions, try journaling about the experience. For some people, it’s easier to write thoughts and feelings down on paper than to say them out loud.   Keeping a journal to write down your thoughts is a way to come to terms with your feelings of grief. Many cancer patients choose to write about their feelings in a blog. Blogging in a community of other patients who understand what you are going through can be very therapeutic (to learn more about starting a blog read this earlier post).

4. Take Care of Your Physical Health

Grief is as much a physical as an emotional process – (we often refer to grieving as ‘grief work’) – so it’s important that we get a good night’s sleep, take some exercise and eat healthy meals to regain our physical strength and heal fully.

5. Pay Attention to Grief Triggers

Anniversaries of your surgery, diagnosis and other cancer-related milestones can reawaken sad memories and feelings. Plan ahead for those times.

6. Go At Your Own Pace

There is no time-table for grief, yet so often we push ourselves to ‘get over’ our grief as quickly as possible. Adapting to and coping with cancer is a process, which neither you nor any well-meaning friends or family should rush you through.  Grieving is not something that occurs once and then you are ok.  Psychiatrist Elisabeth Kübler-Ross introduced what became known as the ‘five stages of grief’ as a way of looking at grieving process, but quite often these stages don’t follow a sequential order. In reality grief can be much more disordered. Some people start to feel better in weeks or months. For others, the grieving process is measured in years. Whatever your experience, it’s important to be patient with yourself and allow the process to unfold naturally.

7. Learn To Adjust To Your New Normal

Often we want to rush through our grief (or others want us to rush through it) so we can get back to ‘normal’ again.  The thinking behind this is when we ‘get back to normal’ we are healed. But we may find that it is no longer possible to go back to who we once were.

Your ‘new normal’ may include adapting to changes in energy and activity levels, adjusting to changed relationships at work and in your personal relationships, coming to terms with an altered body, and managing pain and treatment side effects. Be compassionate and gentle with yourself as you move through this process. Don’t judge yourself or try to hurry the experience along.

8. Take Stock

Many people see this as a time to create a new way of being in the world. Psychotherapist Karin Sieger sees in this time “opportunities of reflection, contemplation, looking at life and ourselves. And sometimes new realizations and decisions can come from that”. Ask yourself what is most important to you now? How do you want to live each day?  Hidden within grief is a healing potential that eventually can strengthen and enrich life. Rediscovering your dreams and identifying what you really want for your life can transform your loss into something new within yourself.

9. Don’t Go It Alone

Grief can feel very lonely, even when you have loved ones around. Turning to others who have experienced similar losses can help. Look to cancer support groups in your area or search online to connect with those who truly understand what you are going through.  Talking to a psycho-oncologist or counsellor can also help.

10. Recognize There Is No Right Way To Grieve

Grief is a highly individual experience. How you grieve depends on many factors, including your personality and coping style.  Commenting in her last book before her death in 2004, Kübler-Ross said about the five stages of grief: “They were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss, as there is no typical loss. Our grieving is as individual as our lives.” Don’t let anyone tell you how to feel.  Your grief is your own, and no one else can tell you when it’s time to ‘move on’ or ‘get over it’.

When Grief Doesn’t Go Away

We all cope with grief in our own way and most of us reach resolution and acceptance in time. It’s normal to feel sadness, depression and grief following a loss, but as time passes, these emotions should become less intense.  If you aren’t feeling better over time, or your grief is getting worse, it may be a sign that your grief has developed into a more serious problem, such as complicated grief or major depression.   If your grief is overwhelming or lasting for a prolonged time, seek out a mental health professional with experience in grief counselling. They can help you work through your feelings and overcome obstacles to your grieving.

Grief can be a roller coaster full of ups and downs, highs and lows.  It takes courage and time to work through your feelings of loss. Grief counsellor Taruni Tan has written that “everyone’s healing process is unique and while there may be universally recommended tools and techniques to try, we each have to discover our own individual formula.” The good news is that most of us who grieve recover with time.   We may be radically changed by the experience, but we find a way to continue to face the future.