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There’s been a lot of talk about Ibrance lately, and it is undeniably good news that the drug for metastatic breast cancer is another step closer to becoming available to women across Canada.

However, there is another piece of this story that we can’t ignore. That’s the fact that even when Ibrance is added to the provincial formulary, in Ontario and the Atlantic provinces it won’t be publicly funded for many. In Ontario specifically, the cost will not be covered for people aged 25 – 64 years old.

Ibrance is a take-home cancer treatment – or in simpler terms, it’s a pill that can be taken outside of the hospital setting. Today almost half of drugs used to treat all types of cancer are taken at home. That can offer patients convenience and freedom from travel, but most importantly it offers patients effective ways to treat their cancer. For breast cancer, more than half of the treatments in the pipeline are taken at home.

However, despite these advances in treating cancer, patients in Ontario and Atlantic Canada face out-of-date systems that are riddled with administrative hurdles and out-of-pocket costs for treatments taken at home. They must apply to a variety of funding assistance programs and ultimately many pay a significant deductible or co-pay. To qualify for assistance programs, patients and their families must submit significant amounts of personal and financial information for their entire household. Patients often face weeks of stressful delay in starting their cancer treatment until the paperwork and approvals are resolved.

In contrast, patients requiring an intravenous (IV) treatment can start that medication as soon as needed and don’t face any financial or administrative burdens, when the drug is included on the provincial formulary. It’s also important to note that Canada’s Western provinces have updated systems that all treat take-home cancer treatments and hospital-administered cancer drugs on an equal basis.

It’s not a question of one type of treatment being better than the other. Cancer medications taken at home and in the hospital, are both effective. One offers freedom from the hospital and the other ensures close monitoring and care. And both can be expensive. But the type of treatment is rarely a choice – it’s the one a patient needs for their type and stage of cancer. And that’s why they should be funded equally.

Rethink is a member of the CanCertainty Coalition, the united voice of 35 Canadian patient groups, cancer health charities, and caregiver organizations, which have joined together with oncologists and cancer care professionals to significantly improve the affordability and accessibility of cancer treatment. This is an issue we’ve been concerned with for a long time, but now it will become a real concern that women with breast cancer face in real time with the introduction of take-home medications for breast cancer.

So, let’s celebrate the arrival of Ibrance in provinces throughout Canada. But we also need to acknowledge there are many more challenges that people dealing with cancer have to face, that go beyond the cancer itself. And an outdated cancer system that doesn’t treat all approved medications the same shouldn’t be one of them.

Shawna
Senior Manager, Support & Education

Last August I had to have an emergency root canal. It was in the morning on the day I was supposed to drive up to Muskoka for Stretch Heal Grow.

Jasmin: Are you sure you are going to be able to come up today?

Me: Yup. It’s just a root canal. How bad could it be?

Jasmin: It’s not good S. You can just come tomorrow morning. Leo and I can handle it.

Me: I am coming. See you later!

I got in my car at 3pm, in the pouring rain with my mouth still frozen and drove the three hours to Trillium Resort and Spa. The night before the retreat was always a treat. It was a time for the team to connect and it was a time to bear witness to the magic of Jasmin.

On the subject of magic, I should set the scene of this retreat for you: Imagine a picture-perfect spot in nature, on a picture-perfect lake (it’s called Devine Lake – I swear), with the cutest little cabins and cottages, a spa, yummy food, trails in the woods and a waterfall (not joking). There was no possible way a root canal was going to prevent me from waking up and drinking my coffee with Jasmin on the dock, before the magic happens.

Photo courtesy of Melanie Gordon

I arrived just in time for dinner and made my way through the muck and puddles to the lodge to meet Jasmin and Leo, the yoga teacher. Somewhere between my pasta and molten chocolate lava cake the biggest, brightest rainbow appeared right outside our window over Devine Lake. Right in our view. All three of us sat silently breathing it in. It was the most beautiful rainbow I had ever seen. No matter how many times I see a rainbow in my lifetime, I am always floored. Completely shocked by the sheer beauty of it and puzzled by it’s existence. This time was different…I had the feeling this rainbow was meant to be right there for our eyes only. To set the intention for Stretch Heal Grow and to send our leader a sign that this retreat was bigger than her. That the universe was going to care about it for the next three days, and always.

Jasmin: This is a good omen ladies.

Yes. An omen…a magical sign.

I had no idea that this would be Jasmin’s last retreat but looking back it all makes some sense – even though her death makes no sense at all.

It was the 5th SHG and we were expecting 23 women to attend this retreat. 23 lucky women and those who attended and are reading this know exactly what I mean by lucky- perhaps a life changing experience…. There is NOTHING lucky about breast cancer, but there is something so special about SHG:

  • An opportunity to connect with other women going through what you are going through. Check.
  • An opportunity to get away from your life for a few days and focus on yourself. Check.
  • An opportunity to explore the benefits of yoga and mindfulness. Check.
  • An opportunity to work through some of the complicated feelings you are having about your life and cancer. Check.
  • An opportunity to meet a real-life unicorn and experience some magic. CHECK.

Jasmin was like a unicorn…

A heraldic representation of this animal, in the form of a horse with a lion’s tail and with a long, straight, and spirally twisted horn. A messenger of sorts, a proclaimer and person that announces. According to unicorn mythology, unicorns straddle the visible and invisible world. They have the power to transform themselves. Symbolically they represent being open to infinite possibilities that surround us (even when we can’t see them) and the wisdom to take advantage of them.

Jasmin transformed herself in the face of cancer. Her spiritual practice of yoga and meditation allowed her to stay open, loving and to find some peace in the darkness. She believed that you can face pain and tragedy AND grow to be the best version of yourself. Don’t get me wrong – I know for a fact that she put a ton of “work” into this practice, but the result was magic.

Photo courtesy of Melanie Gordon

One was captivated in her presence. I witnessed this over and over again working with her on Stretch Heal Grow and getting to know her as a friend. People gravitated towards her… it was like they wanted to bask in her spirit and her magic. They seemed to desperately want something she had… to unlock the secret to finding yourself again in the midst of pain and sorrow. She compassionately gave people the power to believe anything is possible.

At some point during the retreat last summer I looked in Jasmin’s eyes and knew she was suffering. She was more tired than usual and she was running off of pure adrenalin. I knew in my heart it might be the last time I would witness the magic with my own eyes.

But I also knew in that moment that ALL of us who were touched by her, knew her and loved her – we carry her secret.

What is required when we are faced with adversity is a leap of faith or a sense of something bigger than ourselves and opening up our heart to infinite possibilities. Sometimes, we can’t see what possibilities surround us, or that they exist – but they are there. There is a power we need to channel in order to believe in them and see them or feel them.

This power allows us to hold space for others even when we are suffering ourselves and it helps us to light up the world. Just like Jasmin. It’s precisely what she wanted.



SHG will feel bittersweet for sure this year, but it also marks the beginning of Jasmin’s beautiful legacy for young women coping with cancer. They will be big shoes to fill, but we have many dedicated feet and more women facing breast cancer who need a little magic in their lives.

Want to help send a young woman with breast cancer on the next Stretch Heal Grow? Donate HERE.

Photo courtesy of Melanie Gordon

Tomorrow April 7th is World Health Day: A global health awareness day sponsored by The World Health Organization (WHO). This year’s focus is mental health. It is interesting to me that the World Health Organization has chosen this topic for their campaign this year. Surely there are other more important health crisis across the globe that trump (no pun intended) depression and mental health? Or are there?

According to a press release put out by WHO in March:

Depression is the leading cause of ill health and disability worldwide. According to the latest estimates from WHO, more than 300 million people are now living with depression, an increase of more than 18% between 2005 and 2015. Lack of support for people with mental disorders, coupled with a fear of stigma, prevent many from accessing the treatment they need to live healthy, productive lives.

They go on to say that they have identified strong links between depression and “non-communicable disorders and diseases” meaning that people with, let’s say… CANCER have a higher risk of depression.

This is a huge acknowledgement in the psychosocial oncology world and one that people diagnosed with cancer need to be aware of. I have heard one too many times from women with earlier stage breast cancer that once treatment is over they felt like they were hit with a title wave of sadness and grief. These two questions linger once the dust settles:

What the F*%k just happened?

Followed by….

Why don’t I feel relieved and happy to be finished with that part of my life?

No cancer equals all better

There is a clear expectation that if you look good you feel better. There is even a program based on this assumption. Just because someone doesn’t look ill or the poster image of a cancer patient doesn’t mean that they are completely healed. There are often lingering physical and emotional side-effects (laundry list here), post-treatment or adjuvant therapies like Tamoxifen and the biggie – recovering from trauma.

Note: Those with metastatic or stage 4 cancer often experience some form of depression or anxiety that requires treatment. They are in perpetual fear and anxiety as they are scanned every 3-4 months.

Many people have heard of Post Traumatic Stress Disorder (PTSD) when it comes to war or an act of violence, but often people don’t think of a cancer diagnosis as the cause of that kind of extreme stress. I am not sure if this belief comes from some sort of normalization of cancer in our society (the “everyone gets cancer” attitude) or maybe it is a belief that cancer is curable? A diagnosis can and does cause some people such extreme stress that 1/3 of people with cancer experience anxiety disorders or depression. That’s 32% of cancer patients according to a study published in The Journal of Clinical Oncology in 2013.

Let me break down some examples of cancer related trauma:

Being diagnosed with the disease

THOUGHT: I may die.

Diagnosis of an advanced cancer

THOUGHT: This disease is incurable and I will die from it.

Painful tests and treatments

THOUGHT: People are poking and prodding me. My body is not my own.

Pain from the cancer itself or other physical issues

THOUGHT: I feel pain and my body is never going to feel the same.

Test results

THOUGHT: The cancer has progressed and attacked other parts of my body.

Long hospital stays or treatments

THOUGHT: I am in a place with sick people. I am a sick person. I am a cancer patient.

A cancer recurrence or the potential for recurrence

THOUGHT: I might get cancer again and there is nothing I can do to stop it or control it. I am at the mercy of this disease.

Often people don’t know they are experiencing any type of cancer related mental health issue until they are there, and they can sometimes feel quite shocked and ashamed. There can be feelings of guilt – you should be feeling grateful or “lucky” that you made it through and your body is showing no evidence of disease. Or you may feel pressure to be happy and to move on from the experience but you can’t.

Being Prepared

I know I say it a lot but I am going to say it again…wait for it…Knowledge is power! Especially when you are blind-sided by feelings that seem antithetical to what you think you are supposed to feel. We hear this with post-partum depression a lot. Here you are – you just had a baby. The joy and happiness you are supposed to be feeling is clouded by anxiety, fear and sadness. No one prepared you for this. You always wanted to be a mother and you always heard this is supposed to be the happiest moment of your life. And then it’s not.

I had post-partum depression and I remember desperately wishing someone had told me or warned me this might happen. Wishing I had the heads up and was prepared so that it was less scary and frightening when it came so that I could be pro-active and put supports and measures in place just in case…and I did with my second child.

It is important that those diagnosed with cancer are prepared in a similar way. While referrals are often made to psychosocial oncology resources DURING treatment, patients are left holding the proverbial bag after treatment. Many are not aware these support services are accessible once their hospital treatment is over, and most initially feel like maybe they don’t need them. This can leave you scrambling in your darkest hour when you are most vulnerable.

As mental health continues to get more and more attention as a health epidemic, it is important that we start with educating our most vulnerable populations. Healthcare providers need to acknowledge risk factors pre-emptively before it becomes a crisis so that those who are at risk can feel empowered to speak up if and when the time comes. They can also arm patients with tools and resources to determine whether they need help and where to go to get it.

The Check-List

The following is a great list from Cancer.net.

If you are experiencing the following, it’s time to follow up!

Mood-related symptoms

  • Feeling down
  • Feeling sad
  • Feeling hopeless
  • Feeling irritable
  • Feeling numb
  • Feeling worthless

Behavioral symptoms

  • Loss of interest in activities that you previously enjoyed
  • Frequent crying
  • Withdrawal from friends or family
  • Loss of motivation to do daily activities

Cognitive symptoms

  • Decreased ability to concentrate
  • Difficulty making decisions
  • Memory problems
  • Negative thoughts. In extreme situations, these may include thoughts that life is not worth living or thoughts of hurting yourself.

Physical symptoms

  • Fatigue
  • Appetite loss
  • Insomnia, which is the inability to fall asleep and stay asleep
  • Hypersomnia (excessive sleepiness)
  • Sexual problems, such as decreased sexual desire

Note: The cognitive and physical symptoms listed above may be side effects of the cancer or cancer treatment. As a result, doctors place more emphasis on mood-related and behavior symptoms when diagnosing depression in a person with cancer.

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For more on the Psychosocial click HERE!

It was Michelle’s blog post 3 Strikes I’m Out that really made me notice her and love her tenacity. She had a passion for baseball and lived by Babe Ruth’s mantra, “Never allow the fear of striking out keep you from playing the game”. There is no one I can think of who embodied this more than Michelle.

3 Strikes I’m Out was about Michelle’s foray into cancer support after being diagnosed with metastatic cancer in February 2014.  This exploration started by immersing herself in not one, but three major cancer programs and the take-home for her from these experiences was that this type of conventional support (group, conferences and retreats) was not for her. She was going to find a way to cope with her diagnosis– on her terms.

I would later find out once we got to know each other over Dim Sum and our love of Blue Jays baseball there was nothing half-assed about the way she approached her cancer. She would try everything and she would ultimately decide if it worked for her not. If it didn’t work, Michelle cut it lose and moved on to what was next – a new treatment, an alternative diet, sharing her story on National television so that other people understood metastatic cancer and those going through it didn’t have to feel so alone. From my perspective, she rarely looked behind her and kept her eyes on the ball, at all times.  She was going to bat with cancer and she believed she was winning every time a treatment or drug kept her stable, even for a short time.

shawna-and-michelle

Michelle was an advocate for more research in metastatic cancer and pushed for more clinical trials and new drugs. I witnessed this at the most basic level when she would share her story with various pharma companies always asking in a commanding and compassionate voice to keep doing what they are doing so that she could continue to watch her son grow up. She would turn to me in the parking lot and say, “I was such a blubbering mess. It was awful.” No, it was brilliant, Michelle, because they not only heard you, they felt connected to the work and compelled to make a difference because of you.

michelle-city-line

The last time I saw Michelle I sat beside her on a panel for the show City Line. I was positioned as the “expert” in talking to kids about cancer and she was one of two young women sharing her experience. In her determined way, Michelle spoke eloquently about the ups and downs of parenting with a terminal illness, she used humour whenever she could and she inspired the audience of mostly mothers to be the best versions of themselves, despite trying circumstances. She was, in fact, the expert and a super hero to many.

rethink-833
Photo courtesy of Catherine Hudon/5Mphotographie

Patti Smith once said “Never let go of the fiery sadness called desire”. I never saw Michelle as sad, ever. Her desire to live as well as she could, for as long as she could, was her super power. I know I speak for all of us who had the privilege of knowing her, laughing with her, working with her and loving her that we will miss her and we will continue to go to bat for her, and all women with breast cancer.

-Shawna + The Rethink Team

 

 

 

Psychosocial support for those with cancer and their loved ones is in a good place. It’s a strange thing to hear myself say because no one wants there to be a need for such things. But as long as there is cancer, there is a need.

Today I am reflecting on BCAM (Breast Cancer Awareness Month) which came and went as fast as lightening and thinking about those with cancer and their loved ones. One month is certainly not enough time to bring focus to the reality of what they are living with every day, and they need constant support and care that speaks to their needs, but also evolves with those needs.

I can proudly say that we’ve come a long way baby in supporting young people with cancer and their loved ones. And by we, I mean Rethink along with our volunteers, professional partners and our friends in other organizations with a similar focus.

There have been many changes and advances in this area and like a parent who grows with their child, support for young adults is growing with the changes that are happening in oncology but also in the way humans relate to one another.

Researching

In general, there is much more awareness that young people can and do get cancer. There have been organizations popping up all over Canada and the US that are helping to spread awareness about their unique needs, provide tailored support and educational tools personalized to them. There has also been a boom in psychosocial research looking at support and future patient outcomes. This is huge because for many years’ healthcare specialists weren’t acknowledging the fact that the trauma of cancer can impact a person’s quality of life for years and years to come. When you are in your formative years of developing your relationships, career and family living with the lingering effects of cancer can be debilitating.

Retreating

These days people have their pick when it comes to finding their cancer tribe. There are adventure retreats like Retreat Yourself, conferences like YSC Summit, yoga retreats like Stretch Heal Grow and there are spiritual experiences like the retreats offered at Callanish Society. A little something for everyone when it comes hanging out with people who are walking in your shoes.

Reconnecting

The days of talking to someone your mother’s age about having cancer are over. Everyone needs cancer friends and peer support is crucial. Not only is it being recognized as a form of therapy by the medical world, peer support programs have evolved by matching people up specifically by age and more importantly, stage of life. There is noting more powerful then speaking to someone who can identify with what you are going through and live it with you.

Retelling

When Rethink decided to forgo front-line programs to offer online connection and community I never imagined how powerful it could be to have women share their stories. There has been a huge shift in the young adult cancer world to online support because that’s where young people are, but first person cancer stories are serving a greater purpose then connecting people to the cause and helping those newly diagnosed navigate the world of cancer.  Blogs, video and online community forums are the newest in self-help models for a younger generation. Story-telling is nothing new in helping people cope with trauma, but a public facing confessional is a great way to crowd source the support you need when you are going through the most difficult time of your life. In some ways it can also authenticate your experience and as the writer Teva Harrison said, “make the dark places less scary.”

Reliving with metastatic cancer

One of the biggest changes to occur in support for young adults with cancer is the incurable cancer movement. I call it a movement because it is a force when you are talking about people like Anna Craig, Judit Saunders, Michelle Riccio, Jasmin Fiore, Emily Drake, Teva Harrison, and Lori Marx-Rubiner. These women are putting themselves out there and advocating for the unique support needs of young adults with stage 4 cancer. Why? Because their reality is different and the conversations that they may need to have are not the same as someone who is “done treatment.”

They are leading the charge so that organizations like Rethink, Cancer Fight Club, Metavivor, YSC, LBBC and many others can create programming, resources and tools specifically for those living with cancer for the rest of their lives. And thanks to the Holly Kitchens of the world, they are also doing it well beyond their days with us and reminding us that we have a long way to go.

…………………………………………………….

Special shout out of thanks to all of the women and their families who have shared their stories, volunteered their time or given us their thoughts on how to better serve those with cancer. We couldn’t have done any of it without you.

xo Shawna

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I recently had something suspicious in my right breast and given that I work with young women who get breast cancer at a breast cancer charity, I should have been mighty freaked out. But I wasn’t. Being a young woman, I know that statistically the odds were in my favour. NOTE: Less then 5% of diagnosed breast cancer cases are in women under 40. Instead, I wanted to use it as an opportunity to describe what the process of going through a mammogram and ultrasound is like.  Here is what I found out…

Time has no business in a hospital

The end

 

If you have had any testing done in a healthcare setting you know that the waiting game is on and it’s strong. Often diagnostics are not running on schedule due to hospital emergencies, broken machines, a technician not showing up for work or a major eathquake. Be prepared by bringing a book, a charger for your phone, ipad or laptop. Better yet bring a friend! I had Bailey with me who was documenting all of this and it was comforting and made the whole process easier.

The Mammogram

The Machine

mammogram uses a machine designed to look only at breast tissue. The machine takes x-rays at lower doses than usual x-rays. Because these x-rays don’t go through tissue easily, the machine has 2 plates that compress or flatten the breast to spread the tissue apart. Ouch.

Assesing the situation

I was escorted into a large cold room by an elderly technician who politely asked me to open my hospital gown. She unabashedly grabbed my breast and stuck it between the above mentioned two plates of glass. This is where things got awkward and very uncomfortable. Did I mention that you have to stand still? You can’t move as your breast is being squished like a panini sandwich.

In the machine

Just when you think you are finished, they ask you to do the other side. This time, I am better prepared and able to help the technician guide my breast into the plates. I try to crack some jokes about my breasts being so small that the machine won’t register the breast tissue but she doesn’t even look up. Apparently she doesn’t know that comedic relief is EVERYTHING when it comes to anxiety provoking situations. The whole process takes about 15-20 minutes and then we are escorted to the waiting area for the ultrasound. Yes more waiting and this time I am told that one of the technicians is stuck in traffic. For reals.

Waiting2

The Ultrasound

The screenshot

I have had ultrasounds before. Several times when I was pregnant and on a few other body parts. I had a good idea of what to expect when it came to the jelly, the dark room and the stone cold technician.

The gel

These technicians are trained like secret agents when it comes to their facial expressions because they don’t want to give anything away- good or bad news. You may not know this, but it is not the technician’s job to give you your results. In fact, they can actually get in trouble! Both a mammogram and ultrasound are read by a radiologist in a different room who then comes to talk to you about what they see or don’t see.

Arms upThis doesn’t stop me from asking the technician if “everything is OK?” She was as evasive as a Russian spy…

Getting frustratedAnd finally….

The Results

Looking at the screenFinally the radiologist came in to speak with me about my results. She asked me to show her where I felt the lump which I thought was odd. If there was a lump wouldn’t she see it??? Apparently I have very dense breast tissue which was unbeknownst to me because I have itsy bity boobs. NOTE: Size has nothing to do with breast density. Tissue can be dense in A cups or DD cups. In the end, I was relived to find out that the test came up clean. There were no masses to be concerned about and I was free to go.  I felt incredibly relieved – but I also felt something else…

The Feelings

Back shot

Obviously I was feeling pretty happy about my results, but I was having other thoughts…I got to walk away carefree this time but what about all of the women who don’t? As I changed back into my summer dress, I tool a minute to imagine how those women must feel getting a very different result from me. Overwhelmed, angry, alone, dumbfounded and probably very scared. And then I remember that finding out you have cancer is just the beginning. Going through treatment, dealing with long-term side-effects, changes in your relationships, your career, your body and coping with the fear of possibly hearing those words again one day must be devastating.

For more on breast health click HERE.

 

 

In the spring Rethink dove into the world of medical cannabis and discovered how it can help cancer patients cope with some of the symptoms and side-effects of treatment. The choice and ability to access medicinal cannabis is specifically important to those living with metastatic disease or stage 4 cancer. These patients are often in ongoing treatment with side-effects that can last the rest of their lives, and often the spread of the cancer itself can cause a huge amount of discomfort, pain and anxiety.

Many women I have worked with over the years are reluctant to use the pharmaceutical drugs and painkillers they are prescribed on a continual basis for an indefinite period of time.  Cannabis becomes an alternative for them to get relief from nausea, pain, anxiety and sleep deprivation without some of the nasty side-effects that come with narcotics or steroids.

It should be an easy transition, and an easy conversation with their doctors – Cannabis is legal in Canada with a prescription right? Check.  And the medical community has validated the indication of cannabis for therapeutic use right? Check.

So why is the process super challenging and tiresome for people who need it and what can they do about it to make their lives easier?

In the most recent Journal of Current Oncology dedicated to cannabis and cancer care, a woman from Quebec describes all the barriers she had to face in order to obtain cannabis for therapeutic use here.

Everything from talking to your healthcare professional to explaining cannabis use to your friends and family becomes a hurdle. Below are some tips for getting through these hurdles one step at a time:

Start the TALK

Using cannabis is still taboo in our society amongst a certain set who see the drug as purely recreational. Thanks to the “WAR ON DRUGS!” in the 80s, many of the attitudes perceive cannabis as a “gateway drug” that can lead to a slew of other problems – and let’s face it, it is illegal. This makes broaching the subject with your physician very difficult, especially if you are shy by nature.

My advice? SPEAK UP. Chances are this is likely not the first time that your oncologist has been asked about this. You have the right to try complimentary therapies and medical cannabis is LEGAL with a prescription in Canada.

Be the Expert

If they seem cold to the idea, be persistent and show them that you know what you’re talking about. Finding and citing legitimate studies and work being done in the field goes a long way with docs. Specifically note research on:

  • The condition or symptoms you are trying to treat that can be alleviated or controlled by medical cannabis.
  • Any active studies or clinical trials
  • Any potential risks associated with your condition and cannabis

And educate yourself on the following:

  • A detailed list of medications and forms of therapy you have tried, their pros and cons, and how you are accessing them
  • What the legalities are in obtaining a prescription in your city (often healthcare providers won’t know the ins and outs of obtaining the drug). For example, in Canada patients who receive a prescription are then responsible for finding a licensed producer (or LP) on their own to purchase the right product for them. (Your doctor may have no idea what this process looks like!)

Keep in mind that if your healthcare provider is not warming up to the idea it is most likely because they don’t know a lot about it or they still have some preconceived notions. You are the best person to educate them on why this is important to you and why it is something you want to explore.

Bring a Communication Strategy + Strategist

This goes for anything having to do with a cancer diagnosis. You ought to know by now that having the right person in the room with you always helps when it comes to asking questions and explaining your POV as the patient. Keep in mind that you may not get the answer or openness you are looking for in the first appointment, but having someone with you who is listening and taking notes may help you with your communication strategy for next time.

Do the Educating

When you have cancer there are a million things to educate your people about, especially when it comes to treatment options and the choices you make. The decision to try cannabis is no different. You may have people in your life who have strong feelings about this idea – the same way they want you to try a specific vitamin that promises to cure you.

At the end of the day, it’s your circus, your monkeys. You ultimately get to decide what treatments are best for you, when to stop a treatment and when to move on to something else. As always there will be strong opinions from the people who love you, and often with some honesty and convincing they come around. At the end of the day they want what is best for you, and if that means reliving your hippy youth through your cancer treatment, they will most like be okay with that.

Stay tuned for our#Rethinkchat @Rethinktweet on September 13th 8pm EST to learn more…

Want to learn more about medical cannabis? Click here!

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Lover of:  my family, my friends, and good food & wine

This was Mel`s answer when I asked her about what she loved. Simple and definitive. She spoke this way about many aspects of her life and as I got to know her, I realized she was a pragmatist with a beautiful heart. Friends and family were her soul. The end.

When we first spoke on the phone before the metastatic Stretch Heal Grow retreat in 2015 she talked about her husband Jason, her twin little girls Frances and Harlow, and about Michele, her identical twin sister, with the kind of love and passion reserved for only the elite in her life.

There is no doubt that Melanie touched people and the relationships in her life flourished because she approached them with 100% love.  She was all-in and it was important to her to focus on the here and now, not on what the future would hold for her and her illness. She told me how living with metastatic cancer affects her day-to-day and I was inspired by how she refused to let her illness define her. She talked about how she preferred the comfort and company of friends and family to other models of support, and how she enjoyed the distraction of continuing to work in spite of it all, for as long as she could.

She declared herself a`realist’ to me, and I think this allowed her to live her life fully and ultimately share her story to help other women with metastatic cancer feel supported and loved too.

In addition to our LiveLaughLearn series, Melanie also participated on our Young + Metastatic panel where she spoke about the needs of young metastatic breast cancer patients and the impact on their caregivers. She had a deep understanding about the important role her loved ones played in supporting her in her struggle with cancer, and advocated for their support needs.

She seemed more concerned for their future wellbeing once she was gone, then the fact that the reality of her disease would cause her to say goodbye too soon.

Each woman I have had the privilege of working with through Rethink has taught me something important. A little nugget of knowledge or inspiration that stays with me…from Melanie I learned that there is mighty strength in loving the ones you`re with, especially when you have to leave them before you are ready.

M

* Photos courtesy of Catherine Hudon/5Mphotographie

A few weeks ago I had a mammogram and an ultrasound for something suspicious in my right breast. The results were good (phew) but I found myself being a little aggressive with the lovely ladies at the breast clinic. I have a short fuse for bureaucratic inefficiencies, especially in healthcare.

This is obviously a billion times more stressful and frustrating when you have cancer, and you are dealing with a potentially life threatening illness. I have heard from many women that for a world class healthcare system, things can be rather bumpy unless you SPEAK UP.

I happen to be someone who has no problem vocalizing my concerns and questioning the status quo of our healthcare system, but what if you are shy? Or what if you think that being aggressive will have an impact on your care? Or what if you are too sick to advocate for yourself?

What extent is it ok to be pushy when it comes to your healthcare?

Answer: A LARGE EXTENT.

You are your own best advocate and asking questions, voicing concerns or getting second opinions never got anyone in hot water. In fact, your healthcare team has come to expect it because they know that it is not always a well-oiled machine and there are cracks to fall through.

Here are some quick tips on finding your voice and putting yourself front and centre in your care:

Use Schlep

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Knowing someone who knows someone who knows someone goes a long way when it comes to jumping the line on diagnostics, referrals or even surgery. While using your personal resources may feel very unfair or counterintuitive, sometimes you don’t have the time to wait. Cancer patients often get triaged quickly, but in some cases an MRI booking or a wait time on a surgery can be too long when there are limited machines and packed OR times. If you have access to people who work in oncology, a quick email or phone call can’t hurt and may help move things along.

Bring a Sidekick

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Having a side-kick or ally when you are going through treatment for cancer is a necessity.

If you are someone who is shy and introverted or if you are too ill and don’t have the energy to speak up, bring someone with you to your appointments who can advocate on your behalf. I am not talking about someone who can potentially be rude or angry because that will stress you out. Consider someone who can take charge in a way that makes you feel comfortable and cared for. It doesn’t have to be a family member, and it may be someone who is less emotional about the whole situation. If you don’t have anyone in your tribe who fits this description, it might be helpful to see if there is a volunteer at the hospital who can be your buddy while you are at your appointments or maybe it’s time to take your neighbour or collegue up on their offer to help.

Be a Queen Bee

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I am a bit of a stickler about trusting your instincts when it comes to your health, which hopefully means trusting your healthcare team when it comes to your cancer care. We are among the luckiest people in the world to have FREE healthcare, but that doesn’t mean we have to settle when things don’t feel right.

If you have a doctor who is making you anxious or you don’t feel like you are in capable hands, it might be time to get a second opinion, and you are entitled to it. In fact, you are entitled to a second opinion for any reason.

If you have a nurse who is trying to start your IV before chemo, and they keep missing your vein, you are allowed to ask for someone else to give it a go. And if you are enrolled in a group for women with breast cancer and you are the youngest one there by 10 years, you can bow out and try something else. This is not a time to think about other people’s feelings or bruising egos – it is about you and your care. Having cancer already makes you vulnerable in so many ways and having some control over the choices you make and the people who are helping you is crucial.

Speak your Truth

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Even in the most capable hands of medical professionals, there are rare instances when the health care system fails. I won’t get into details, but these situations are heartbreaking and frightening. Doctors and nurses are human so there is room for error, malpractice and abuse.

In these situations, I refer people to whatever the provincial governing body is for the particular profession. For example, in Ontario doctors have the College of Physicians and Surgeons and nurses are accountable to the College of Nursing. All regulated or governing organizations have a complaints department and process. They take compliance with their rules and any malpractice VERY seriously. If you are not sure whether what has happened to you qualifies as malpractice, you can speak to someone at the college about your concern before you lodge a formal complaint.

Each hospital has a Patient Services department where you can also send a letter if there has been any misconduct or instutuional errors. Again, hospitals take patients concerns quite seriously and will often follow up quickly.

As a last resort in Canada, there is always the Ombudsman for each province which is an independent officer of the Legislature who investigates complaints from the public about government services.

I can’t stress enough how important it is to speak up if something goes wrong for you even if it won’t change the outcome of the mistake. Healthcare professionals need to be accountable so that they can learn from their errors so that it doesn’t happen to someone else. If you are not up for the “fight” consider having a friend or relative speak up on your behalf.

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For more information on your rights, check out Rethink Breast Cancer’s Care Guidelines for young women here.

There has been a lot of discussion about death lately in the media. We openly mourn and reflect on pop icons and global tragedies on social platforms, but still remain extremely private about discussing our own death or that of those close to us. So what if you are someone who is dying or living with a chronic illness? What if you want to talk about it? How do you do that if the people around you are scared?

WHAT IF YOU WANT TO TALK ABOUT DEATH?

In Dying With Nothing To Say, Katie Roiphe writes from the perspective of a loved one about the fantasy of a final conversation with someone they love. I agree that most deaths are not glamorous or pretty and those watching someone die shouldn’t have expectations about righteous last words. However, I do think the other side to this argument is that discussions about end of life are so uncomfortable that most people go out of their way to avoid them.  This can cause a disservice to someone who is imminently facing their mortality and needs to process it.

Over the years of working with young women with metastatic cancer, I have been asked how to have these conversations with their loved ones. While it is easier for trained professionals to listen and talk about death, for most it is extremely difficult and the topic often remains off limits. It becomes the pink elephant in the room very quickly. A dark pink elephant.

Here is my advice for those that want to start the conversation about dying with the people they love:

Choose your people wisely

Not everyone is good at having difficult conversations. Much like when you were originally diagnosed, there are going to be people who are good at one thing (think about your sister-in-law who has baked you 100 casseroles) and perhaps not so good at others. You most likely know by now who that inner circle of people is who say the right thing and you can have these intimate convos with. If writing comes easily to you, have some thoughts written down that may help to generate the discussion or maybe start with a preliminary email.

Be direct: Your people may not be mind-readers

Once you have a sense of who you can trust with this difficult topic, be clear what you want to talk about. If you are cracking jokes about your funeral or what you are leaving to whom, they may not know that you are seriously wanting to dive into this conversation.

Here are some key tips on starting a conversation and pushing through the difficulty to get across what you need to share:

  • Be clear about what you need. “I want to talk to you about__________” is sometimes the best way to start the conversation. If you want to give them a heads-up beforehand, maybe send them a note to let them know.
  • Note the specific things you want to discuss. Are they practical things like funeral planning, legacy tasks or estate planning? Or do you need to just talk about your thoughts and fears?
  • There may be specific people you need to have this conversation with, but they are not open to it. For example, if you haven’t discussed specific arrangements with your partner or your parents for fear that you may upset them. Consider a professional mediator for these conversations or you may want to rehearse or roll play with someone else who is open to it beforehand.

Actions speak louder then words sometimes…

Like going through treatment when everyone wants to help, assigning a job or a project might augment awkward discussions. For example, who might be good at planning a funeral or helping complete some of the legacy projects you have started? One woman who I worked with asked me to help come up with a list of movies she could watch with her children and a playlist of her favorite music. Sometimes discussions flow from these projects and doing something like creating a list can feel very productive.

Sometimes there are no words. There is only compassion.

Talking about death with someone you love can be extremely painful and uncomfortable, and many times there are no words. Chances are you are terrified, and they cannot relate to this type of fear.

Normally your go-to people are the ones that can empathize with you. Empathy is understanding how someone feels, and trying to imagine how that might feel for you — it’s a mode of relating. This can work well when you are sick after chemo for example, because even if they haven’t experienced chemo, they know what it feels like to be very sick. And even if they don’t, they can try to imagine it and offer a response. Compassion takes things a step further and requires action. It is the ability and willingness to stand alongside someone and to put their needs before your own.

Your loved ones will want to speak and offer their best advice the most when you are at your worst. This will be their way of trying to make it better in a situation where there is no better. The reality of what is happening cannot be changed, and you are not going to feel “better” or good about it. Let them know that you are not going to feel scared or alone if they are able to sit with you in your grief and pain.

FIND THE PEOPLE WHO CAN SIT IN SILENCE AND HOLD SPACE WITH YOU

Here is my advice to you – find the people who can sit with you in silence and hold the space for you when you are suffering. What does it mean to hold space for someone else? It means that we are willing to walk alongside another person in whatever journey they’re on without judging them, making them feel inadequate, trying to fix them, or trying to impact the outcome. When we hold space for other people, we open our hearts, offer unconditional support, and let go of judgment and control. This is what is often required during end of life conversations and if you are doing it for your loved ones, it’s time to stop and look for the people who understand that what you have to say, is way more important than their own needs and desire to control the situation.

For more information on end of life, check out the following:

Interactive site for conversations about death: Death Over Dinner

Guide on practical + end of life care planning: A guide from Willow

Spiritual advice and guidance: Roshi Joan Halifax

Rethink Breast Cancer’s documentary on being young and living with metastatic cancer: I AM ANNA

Rethink Breast Cancer’s practical tips and best advice from young women: Young with Metastatic Breast Cancer

Rethink Breast Cancer’s video series for kids about cancer: Mission Recovery

Rethink Breast Cancer’s video series for caregivers:  How to be a loved one (of someone with cancer)

Support for the whole family: Canadian Virtual Hospice

Young Survival Coalition End of Life Series: The Shady Pink Elephant

A quick conversation guide for friends and loved ones: How Not to Say the Wrong Thing

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In need of support? Join Rethink’s Young Women’s Network (RYWN) here.