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Wishes do come true. But only if you make them happen.
It was late evening on March 21, 2012. I was standing on my front porch, surrounded by the chill night air, and listening to the melting creek bed whispering notes of spring. I had just left the hospital and my MRI and there was nothing to do now but wait, and live in this moment.
I stared up at our second storey windows. Inside, my children slept soundly, oblivious to the turmoil in their mother’s mind. I turned my head to the baby’s window. She stirred. There would be no nursing tonight, the MRI’s contrast agent coursing through me had nixed that. At 15 days old, she was already getting used to my not being around. I wondered if this was to become a pattern. Would I be there to hear her first words, to see her first steps, and to watch her enter kindergarten? I was angry and determined to do away with most, if not all of these unknowns. I didn’t know how I would do it, but I was going to give it my all.

Inside, my children slept soundly, oblivious to the turmoil in their mother’s mind. I turned my head to the baby’s window. She stirred. There would be no nursing tonight, the MRI’s contrast agent coursing through me had nixed that.

Of course, I failed miserably. One does not simply “remove” unknowns, they are inherent in life. But I did learn to live alongside them. We actually became best buds, me and “wtf is going to happen next?” Of course this was doubly fun as there were the cancer unknowns coupled with the newborn/third child dynamic unknowns. It was pure chaos at times, pure joy at others, and somehow, some way, we made it to this day.

Today is March 21, 2017. Imogen turned five this month, and I’ve reached my five-year Cancerversary, a day that seemed a distant wish that night on my porch. I often wondered what I would write about on this day, should it ever come. In the end I thought it might be fun to record a through-the-years snapshot of my cancer experience in relation to Imogen’s first five years of life, and how we adapted to our unique set of circumstances.

Year One

Family focus: Corralling a newborn, a toddler and a 4-year-old. 
Medical focus: Active treatment “Poison – slash – burn” (chemo/mastectomy/radiation).
Side effects: Many, all of them covered in my previous posts. Bottom line: I sucked it up because I had kids to raise. It was The Littles against me, and I was severely outnumbered!
Activities: Hospital visits, scans, blood work. Extreme hand-washing. Friends. Blogging! Ditching my home-made baby food and esteemed cloth diapering practices for store bought food and handier, enviro-arch enemy disposable diapers. Le sigh.
What I learned: Check your guilt at the door. Guilt was something I let go of very quickly. Except on the day that I started chemo and had to stop breastfeeding. That day almost did me in.

We actually became best buds, me and “wtf is going to happen next?” Of course this was doubly fun as there were the cancer unknowns coupled with the newborn/third child dynamic unknowns. It was pure chaos at times, pure joy at others, and somehow, some way, we made it to this day.

Year Two 

Family focus: Potty training while chasing rapidly mobile warp-speed toddler.
Medical focus: Endocrine therapy (Tamoxifen – med which blocks estrogen to reduce risk of recurrence).
Side effects: Fatigue fatigue fatigue. Memory loss. Crazy mood swings. Anxiety, is that you?
Activities: Brain fog workshops. Yoga. Nutrition classes. Belly dancing. Camping. XC skiing. Peer support. Reading French books to kindergartners.
What I learned: It is totally OK to let her stay in diapers a little longer. It’s not first-across-the-finish-line. A contained bum makes for a happy mum, and I was happy not to be cleaning up messes while functioning on 10% energy stores.

Year Three 

Family focus:
Twos which were not so terrible, but sibling rivalry in full force to even things out.
Medical focus:
Oophorectomy (ovary removal to further reduce estrogen levels). New endocrine therapy meds (Aromitase Inhibitor)
Side effects: Sudden, forced menopause. Osteoporosis. Debilitating bone pain. Morning immobility from the meds (“90-year-old syndrome”). Further memory loss and inability to multi-task. Anxiety creep.
Activities: Back to work! (wonderful timing); Myriad medical appointments for primary and complementary therapies. Camping, XC skiing and nature hikes with the kids.
What I learned: Don’t be bullied by your disability insurance company. Don’t go back to work before you are ready. I had some solid measures in place on the road to recovery (exercise, chiro and physio, mental health activities) and had to stop/reduce all of them to go back to work. Le double sigh.

Year Four

Family focus: “Threenager” enters household and achieves Herculean strength just as I reach an all-time physical low.
Medical focus: Endocrine therapy continues. Calcium and Vit D to combat the bone loss.
Side effects: Everything from year three upped a notch. Thinning hair. Swearing. Feeling like a bit of a fuckwit at work.
Activities: Endless appointments in vain attempt to find source of mystery ailments (cardiologist, respirologist, psychologist, sleep study); Girl Guide Leader! Young Breast Cancer network community organiser.
What I learned: Netflix used wisely is an effective strategy for taming the threenager.

Year Five 

Family focus: All three kids in school! Separated from spouse.
Medical focus: Endocrine therapy (continued). Biphosphonate recommended to combat osteroporosis – resisting this but it may be futile. CPAP machine!
Side effects: Everything from year three and four. Increased memory loss, loss of taste, chills, hypothyroidism. Sleep apnea. Insomnia. Mental health waning. Working harder with fewer results. Feeling like a total fuckwit at work.
Activities: Working single mom of three. Girl Guide Leader and Young Breast Cancer Networker – wait, am I still young? Mindfulness practice.
What I learned: Cancer’s wrath doesn’t end after treatment, nor after five years. Be at peace with this. Look to nature for calming. Focus on your children and loved ones, who make life beautiful.
Looking back, it has been a very full, very long five years that stretched on forever then passed in the blink of an eye. Then suddenly, it was Imogen’s 5th birthday. I watched her close her eyes, make her wish and easily blow out the first four candles. The fifth and final was stubborn, and she repeatedly huffed and puffed to no avail. In stepped her siblings, her mother and her friends, and together it was extinguished.

What I learned: Cancer’s wrath doesn’t end after treatment, nor after five years. Be at peace with this. Look to nature for calming. Focus on your children and loved ones, who make life beautiful.

Our story is not ours alone. It is the human story, that of the spirit and strength of so many who surrounded us with love and support, despite what was going on in their own lives. Today I celebrate all of you, and five years of knowing what a remarkable difference people can make in each other’s lives.

My wish came true.
Ellen2
– Ellen
……………………………………………
Ellen’s post was originally published here on her blog. For more stories from young women with breast cancer click here.

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.

Psychosocial-banner

For more on the Psychosocial click HERE!

When “traditionally” getting pregnant becomes less of a reality women may start to seek out other family planning options like adoption and surrogacy or gestational carrier (yes, there is a difference which we will explain below).

Getting information for the latter is tricky and especially challenging when you don’t have the means or resources. We asked one woman who went down this road what advice she would give to another and here is what she said.

Gestational Carrier or Surrogate?

You can’t begin to do your research until you know what you are researching. Many people use surrogacy synonymously with gestational carrier. There is a big difference.  A gestational carrier or gestational surrogate is a woman who carries a child conceived through the process of in-vitro fertilization utilizing the egg and sperm of either the intended parents and/or an egg donor or a sperm donor.  In vitro fertilization (IVF) is a necessary part of this arrangement because eggs from one woman are used to create an embryo implanted in another. In IVF, fertilization occurs after eggs and sperm are combined in a laboratory. The resulting embryo or embryos are then transferred to the gestational surrogate’s uterus. The traditional surrogate is the baby’s biological mother because it’s her egg that was fertilized by the intended father’s sperm.

Selecting a clinic

There are a variety of fertility and reproductive clinics in Canada from which to chose. My oncologist took care of the referrals however he was inexperienced with fertility and reproductive clinics so referred to the clinics upon my request.  Our experience was with two different carriers – friends who volunteered to help us have a child. We tried two rounds with our first clinic/carrier and when a pregnancy was not successful we were ready to quit. When a second carrier came forward we attempted a third round at the second clinic and a pregnancy ensued. The experience with both clinics was very different one from the other. The first clinic was affiliated with a hospital while the second was an independent organization (private clinic). The hospital affiliated clinic felt very regimented in their approach, while the private clinic’s approach was more personalized taking into account the special circumstances of individuals.  At the private clinic we saw the primary physician (as opposed to a resident), who was well- versed with surrogacy and worked efficiently as part of their team.   When I compare my experience between both clinics….it was like night and day.  I had not previously considered how important the choice of clinic would be.

Choosing a lawyer

There is a lot of legal information that needs to be discussed and the contractual agreements between all parties are extensive.  It is imperative that the lawyer be well versed in Surrogacy Law.  Employing a lawyer that is unfamiliar with Surrogacy Law can result in confusion, delays and unnecessary costs.   As an example, three lawyers were involved in the successful pregnancy process: one lawyer drafting the contractual agreement on behalf of us (the intended parents).  Once the pregnancy was successful another lawyer was required.   Each lawyer specializes in specific tasks and responsibilities.  Finding out upfront “who” is responsible for “what” is important as it will minimize confusion of expectations and better prepare for costs.

Expenses

The entire process from carrier selection to post delivery is very expensive.  There are opportunities to apply for funding assistance through Fertile Future – however we weren’t successful in completing the application due to issues with my insurance company and the way their billing worked. Fertility clinics do provide upfront an approximate fee schedule providing details relating to the cost of the various processes and fertility drugs etc., but then there are legal fees, potential donor/potential carrier/fertility clinic fees, and expenses paid to the surrogate (which is a capped amount).  Some drug plans do not cover any of the fertility medication for the egg retrieval process or for implantation – important information to be aware of before beginning the process. There are also costs associated with agencies that assist in securing anonymous egg or sperm donors that can provide additional possibilities to potential parents, or agencies that can help find a carrier.

– Anonymous

………………………….

For more information on fertility issues post-cancer treatment click HERE.

Part 2: Central Support

Now that you have started to re-build your physical strength after surgery with the exercises in Part 1 of this series, you should be feeling an increased range of motion and mobility, and hopefully a greater sense of ease and confidence in your body along with it. Now is the perfect time add to this next group of exercises to your routine. This series will hone your focus on your spine and build central support for your entire body from the inside, out.

One way to think about how the body works is to consider a central support system built around the spine. Just as the mast of a ship is the centre that holds the sails, so the spine is the key support of the entire body. Another image that is often helpful when we think of the centre of the body is a ½ wetsuit. It wraps the torso and covers the hips and shoulders. Everything inside the wetsuit contributes to the support systems that keep us upright, stable and mobile. So, even though the trauma point of this surgery is in your upper body, adding exercises that focus on your spine will set the stage to build strength along the centre line and create three-dimensional support for your entire body.

Deep in the body, some muscles form what is called a girdle of support. Nestled along the spine, we have the multifidi muscles which are responsible for almost 70% of the spine’s stability. Next are the more than 20 muscles we use to breathe. Conditioning our breathing muscles is critical to creating a stable yet mobile ribcage which is the bony base of support for the shoulders. More superficial we have the abdominal obliques, which provide the muscular support around the ribs. These muscles connect to the primary muscles in our shoulders and help control smooth, efficient movement in the upper body. Finally, the muscles of the buttocks and back work to create a posterior sling, like a diagonal seat belt running from each hip to the opposite shoulder.

These four sets of muscles, when in sync, help us feel stable, aligned and secure in the midriff: like we have a base to rely on for all our daily movements of the upper body. When you access and target these muscle systems correctly, you create support that will help balance out pain, strain or weakness in the body, in this case, your upper body.

There is no magic bullet to this process but commitment and work. After 4-6 weeks of doing these exercises 3-5 times a week, you should be feeling physically powerful and stronger, and mentally and emotionally confident as a result.

Guidelines

  • This is a 3-part, stage 1 exercise series designed to recondition your entire body before you return to regular workouts that are weight-bearing on the arms.
  • You should not feel any pulling or ripping sensations. If you feel any strain, make your range of motion smaller. If this does not help, omit the exercise altogether and revisit in in a week.
  • Do 6-10 reps of each exercise one after the other, then do three sets of the entire series. (Approx. 15 minutes)
  • Start with 3 – 5 times a week. Begin these exercises, based on the recommendation of your physician.

Breathing (lateral and back)

Sit or stand and wrap a stretchy band (or even a pair of tights) around your midriff. Cross the ends over each other in the front and pull on them, so the band feels snug around your ribs and abdomen. Breathe laterally, (out to the sides), and backwards, so your torso expands into the band. Then, as you exhale, deflate and narrow your torso to squeeze the air out. As you exhale, tug on the band so at the same time, so it pulls in around you. Don’t worry about taking a big breath. Focus on expanding sideways and back without raising shoulders and straining your neck. Keep it small to start and if you feel strain or excessive tightening in your neck, ease off.

Rocking (multifidi)

Stand in a split stance with one foot forward and one foot back. Rock from foot to foot in a rhythmic motion. Allow your arms to swing easily. It is unlikely you will feel your back muscles and instead, may be aware of muscles in your buttocks and legs. Repeat on the other side.

Hip Sway (obliques)

Lie on your back with knees bent and feet flat. Lay arms at sides, like an A-frame. Sway your knees to the left until you feel heavy on your left buttocks and shoulder with right buttock and lower back lifted off the ground. If easy and comfortable, keep your shoulders square. If not, allow them to move with you. Roll back to centre as if unwinding the spine until you return to the start position. Repeat on the other side.

Neutral Bridge (buttocks and back)

Lie on your back with knees bent and feet flat. Lay your arms at your sides. Press your feet and the back of your shoulders into the floor and raise your hips toward the sky. Then, lower your hips with control. When you lift your hips, imagine a long diagonal line from your shoulders to your knees. If you feel your lower back working a lot, lower your hips slightly: you may feel your buttocks immediately or not. Avoid squeezing them as this may strain your knees.  

***

Margot McKinnon (B.Ed., M.Ed.) is a Pilates and Movement Specialist dedicated to helping train teachers and the general public to move with ease and integrity. 

An anniversary commemorates an event that took place on that day in a previous year. Anniversaries are often celebrated as a joyous occasion such as a birthday or a wedding anniversary, but they can also commemorate a tragedy such as the death of a loved one.

Today marks an anniversary for me – This day in 2014 was the day that I was told I had breast cancer. Super grim.

I’m one year clear. A one year survivor.

I feel fortunate.

It’s a strange anniversary, or ‘Cancerversary’ as it’s often referred to in our circles (The elite group of special people whose bodies have turned into angry bastards and tried to kill them from the inside out) and getting to year one is an achievement.

Of course, I’ve got a long way to go until I reach the five-year hurdle, the time when the doctors say that you’re out of the danger zone, effectively cured…

That’s not true though. We all know that secondary (metastatic) cancer can strike after the five-year hurdle has been reached, even after ten years or longer. After two years, the risk of recurrence drops considerably but with breast cancer, it can come back at any time.

I remember my breast cancer nurse saying to me upon checking my dressings after surgery, ‘I wouldn’t call yourself cancer free yet, not until you’ve reached your fifth year.’ That hit me like a ton of bricks. The bastard had been removed, I was scheduled for chemotherapy and radiotherapy to make sure none of the bastard’s bastard offsprings were lurking around. Why couldn’t I say I was cured?

What scares me the most is that if it does come back, it’s been there all the time, that rogue cell just waiting to implode and turn my life upside down. The thought of walking around with a ticking time bomb inside me is unbearable.

So I try not to think about it.

I’m one year clear, a one year survivor.

It’s so scary.

It’s a constant fear and I have never felt so much like my hypochondriac Mother – every lumpy bit or pain I feel – has it come back?

I’m finding that bit the hardest to deal with. Like cancer has been beaten but it’s still playing a massive part in my life, still weighing in with the threat.

It’s almost like I’m constantly looking over my shoulder, trying to catch a glimpse of someone or something that is following me on a walk home on a dark night. I’ve been told that you have to be careful walking alone at night and I know that attacks are a reality, but is my anxious, weary feeling just a case of paranoia?

I don’t want to accept that this is my new life. I miss the days of being carefree.

I’m a one year survivor and I feel so angry and guilty.

Angry that some of the girls I have met are not survivors. Angry that they’ll never celebrate their Cancerversary – they won’t even get to celebrate another birthday.

Guilty that I’m still here and they’re not. Why did I get a long straw? How is that fair? None of this is fair. I feel privileged to have come this far.

I met some people along the way who didn’t even reach their first year before being diagnosed with secondary cancers which took their lives far too soon. It happened so fast… I haven’t had time to digest it. Still kind of don’t believe it. I mean, what is this life? Where the people you meet, the same age as you, they end up living out their last few days in a hospice?

My life has been turned upside down and the plans my husband and I had made have been scuppered. It really takes its toll on my husband. He was more desperate to start a family than I was and I see the way he watches our niece and other little girls (he’s desperate for a little girl) – I know that he’s thinking how unfair it is that we may never have that. We may never get to have our own child. I know when he sits and thinks about it, he gets quite upset. But he’s mainly angry. Because cancer is a shit.

Can I really celebrate this day?

So much has happened since July 2014.

I remember driving to the hospital on that day with my husband and my Mum. I already knew I had cancer at this point. I had a gut feeling and could also gauge from the reactions of the doctors and nurses when I had my breast scan and subsequent mammogram followed by biopsy. I actually got a hug from the professor.

They couldn’t tell me of course until the results were in but they knew what it was. From their facial expressions, so did I.

That day was just the confirmation of the news I already knew. It was the first time I had cried about it. The first time I was really scared. So scared my hands were shaking.

My mind ticked over with various thoughts as my doctors spoke to me about my diagnosis. I couldn’t hear what they were saying, I just kept thinking ‘Am I going to die?’ ‘Will my parents outlive me?’ ‘Who will look after my husband if I died?’ ‘What about the business?’

Following that day came numerous appointments: X Rays, more biopsies, surgery, had my egg supply boosted with injections of FSH for 12 days, several vaginal ultrasound scans to check the progress of my eggs (hated it — stay away from my vagina, stop looking at it and don’t even think about putting that weird stick anywhere near it) another general anesthetic to perform the egg retrieval, fertilizing of my eggs and my husband’s sperm to create embryos that are now frozen and waiting for us should we ever need to use them. Six rounds of chemo with the dreaded cold cap. Four weeks of radiotherapy, four sessions of physiotherapy to attempt to sort out my chemo mangled arm, reduced to an inhaler to help ease tight, painful chest and breathing, a possible side effect of rads and 146 Tamoxifen pills taken to date.

I have another anniversary this year – my birthday. I’ve already celebrated one birthday since diagnosis and I cherished that day with all of my heart. It’s so funny how with previous birthdays, I’d brush them under the carpet, denying that I had grown another year older, resenting my age and wishing I was still twenty-one. I’ve realized that aging is a privilege that isn’t given to everyone and the fact that I can say ‘I’m another year older’ is a big achievement – certainly cause for celebration.

My cancer diagnosis has changed me and although it’s been the hardest, most terrifying year of my life, it’s also been the most enlightening.

I wouldn’t say cancer was a gift because if you ever go through what myself and my friends have gone through, or if you ever see a young person so desperate for life, so full of charisma and light be told that they have six months left to live because of this horrible disease, you’d think differently and see it for the cruel monster that it is.

But I can’t mope around. I think by doing that I’m doing myself and the friends who haven’t survived an injustice.

I think it has made me a better person. For myself, at least. I’m better at life now. I prioritize certain things that I hadn’t necessarily done before – my health for one.

I try to keep my stress levels down, eat the right foods, get enough rest, exercise – you know, the basics that we all take for granted. My family and friends and how I make them feel is a priority for me. I want them to know how much I love them and want to enhance their lives in any way that I can.

I prioritize fun most of all.

If there’s something I want to do, I want to do it now, because it’s fun and who knows what’s around the corner?

If I love you, I’m going to tell you. I’ll also tell you if you’re pissing me off because with a cancer diagnosis comes big, take-no-shit balls, and I really don’t have time for energy draining, negative, unkind people in my life.

If anything does come back, at least I can say I’ve lived wonderfully and that’s the point of it all.

Do what’s best for you. Let go of what you think your life is supposed to look like and celebrate what you have. Wake up early to live an hour longer. Enjoy today. Get on that airplane. Show love. Be strong. Go ahead. Celebrate every minute.

Diane Riley-Waite lives in Birmingham, UK. She was diagnosed with breast cancer at age 32. This post originally appeared on her blog A Little Earthquake.

Let’s talk about sex, baby – Let’s talk about you and me
Let’s talk about all the good things – and the bad things – that may be
Let’s talk about sex

Salt ‘n’ Pepa lyrics filled my head recently as I prepared to moderate a panel discussion on Body Image, Sexuality & Breast Cancer following a performance of Maja Ardal’s play HER2 by Nightwood Theatre. I was joined by a panel of brave, brilliant women who shared their perspective on the subject from their experiences as a PhD candidate in Clinical Psychology (with a focus on sexuality in respect to female cancers), a Sex Educator, and a young woman who experienced breast cancer at the young age of 28. Here are some reflections from this provocative topic discussion.

Sexuality encompasses a wide range of feelings, desires, and preferences. Body image plays a major role in our sexual health, and is shaped by a variety of factors. Bottom line? It’s complicated and incredibly personal. A breast cancer diagnosis and its treatment further complicate matters, especially for young women in the prime of their sexual lives. Sex is not often at the forefront of medical discussions while in treatment –there is no shortage of “issues” to deal with during this time – yet maintaining intimacy is critical to quality of life.

Even outside of the context of cancer, it is evident that many women experience issues with body image & sexuality. Our panelists lamented the fact that little study has been done on this issue, but that “most” women they encountered had concerns to some degree. I polled the audience to see how many had experienced issues around body image and sexuality and those bold folks pretty much unanimously raised their hands.

Panelist Kim Sedgwick of Red Tent Sisters stated: “Navigating sexuality and breast cancer has its own unique physical and emotional challenges, but many of them are extensions of issues we all face.”

So why do we avoid talking about sex? It’s in our face all the time. We live in an incredibly sex-saturated society – but candid personal conversations are comparatively rare. Perhaps it is because “good girls don’t kiss and tell”? There is still a lot of shame and stigma attached to sexuality. Or maybe it is because the depictions we see of sex are so narrow that we aren’t inspired to explore our unique interests. Moreover, sex is an area of our lives that can be incredibly emotional – even traumatic. We may want to improve our sex lives, but it takes persistent work – so we put off the conversation until it becomes too big and portentous, silencing our need for satisfaction.

Over 65% of young women with breast cancer are concerned with loss of libido as a major side effect of treatment.*

There are numerous physical and emotional challenges resulting from breast cancer and its treatment that can affect sexual ability and desire. The shock and uncertainty of an initial diagnosis alone may leave intimate encounters on the back burner. Surgeries and radiation bring about drastic bodily changes and scars and can affect the skin’s sensitivity. Chemotherapy brings various side effects from hair loss to body pain & discomforts to fatigue and depression/anxiety. Vaginal dryness can make intercourse painful, and sore, dry skin can make you feel untouchable. Many treatments lead to suppression of ovarian function and/or early menopause, disrupting the hormone balance and upsetting the delicate interplay between the fertility cycle and libido. Infertility affects some women as a side-effect of treatment, which can cause further stress on relationships and sex as there are often feelings of guilt, insecurity and loss that detract from focusing on bodily pleasure. Overwhelming situations and additional medications can cause unpredictable mood swings. The list goes on.

It is hard to feel sexy when your sexual organs feel like they’re under specific attack – and the whole journey can have a devastating effect on body image.

Many people continue to have an active sex life during chemotherapy, or things return to normal soon afterwards. But sometimes this isn’t the case. Body memory following trauma can be painful – it is difficult to break a cycle of painful intercourse, and you may need some redirection as you heal. How do you communicate about body changes to your partner as you are entering into more intimate territory? Is it possible to reframe your inhibitions to focus on what you can do to connect and be more intimate? Embracing the available options can lead to more confidence as you discover your “new normal” in the bedroom.

The experts on our panel shared some specific strategies that you can use to help with sexual connection following bodily trauma:

  • Take intercourse, or certain body parts, off the table. Don’t try to “force it” in areas that are painful or where there are lingering body image issues. Part of finding your new normal is the adventure of discovery. Things that used to feel good may not anymore, but it can be fun to find out what DOES feel good. Spend some intimate time with your partner exploring – the mouth, ears, neck, shoulders, back, knees and feet are erogenous zones that are particularly sensitive to being touched – especially when you have made a conscious choice to take off the pressure of intercourse.
  • Experiment with both spontaneous and scheduled intimate time. Try to be receptive to in-the-moment displays of affection, but also set aside specific times for exploration so that you can be prepared and even start to get excited with the anticipation of these encounters.
  • Watch an erotic movie. There are some empowering female directors out there making erotic films that can give you ideas for exploring intimacy. Still intimidated? Start by snuggling up a little closer with your lover the next time a sexy scene in a feature film turns you on.
  • Visit a sex store that takes a sex-positive approach to sexual pleasure, health, and education. Come As You Are and Good For Her are good examples in Toronto, but most cities have them. Go alone to discover what tickles your fancy, or bring your partner to open up some playful communication. Vibrators and lubricants can help with vaginal dryness, and many shops offer educational workshops.
  • Investigate the available services & programs in your city! Panelist Kim Cullen developed and facilitates an online intervention for couples facing breast cancer, and Kim Sedgwick co-founded Red Tent Sisters with her sister Amy, which offers workshops and coaching as well as a pretty amazing blog.

How can partners help? Openness and communication are key. Partners can take the pressure off by taking the initiative and opening up gentle lines of communication without judgment. Let your partner know that you still find them beautiful and desirable. Rev up the romance with intimate touch, without expectation. Snuggle more: skin-on-skin is generally full of oxytocin goodness. Go slow and pay attention.

Do you have any tips for improving intimate relationships during or after treatment for breast cancer? Please share them with us!

*In 2013, Rethink Breast Cancer commissioned Canada’s first-ever qualitative Needs Assessment survey about the young women’s breast cancer experience, from diagnosis through treatment and post-treatment. This survey showed that younger women generally had more aggressive treatments and higher levels of stress when compared to older women, and that relationship issues were top of mind. Check out the report for more stats and insight into young women and breast cancer.