Category Archives: Cancer Survivorship

WORDS OF WISDOM

Today I came across this old article written by Nina Lamparski in the Wentworth Courier, 21st March 2007

Counsellor Jane Gillespie’s book “Journey to Me” openly talks about her battle with cancer.

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Author Jane Gillespie had just finished her chemotherapy when she decided to run away. “I’d bottled up all my feelings about having cancer and once the treatment ended I suffered a breakdown,” she explained. “I just had to pack up and leave.”

The Canberra mother of three had been diagnosed with a malignant lump in her breast in 1994, a “harrowing experience” that would turn her “whole world upside-down” & push her to flee to Sydney.

In the autobiographical Journey to Me, to be published on 24th March 2007, Ms Gillespie recounts how the pressure to shield those close to her from the emotional trauma became impossible. “Cancer is not just a physical illness,” she said. “It literally eats you up from the inside. You feel like you can’t share it with your family and friends. You want to protect them and not burden them even more. Eventually I couldn’t stand this anymore.”

But her impromptu move interstate did not provide the relief Ms Gillespie had hoped for. “I thought I could leave the past behind and yet it followed me. Imagine my shock when I discovered I’d brought myself with me.”

In the end, “I believe it was joining a Life Force Cancer Foundation support group that saved my life”, Ms Gillespie said. The not-for-profit organisation, which has support groups in the Eastern Suburbs and Inner West, helps cancer survivors deal with the emotional aftermath of their illness. There is also a separate Inner West group for carers.

Ms Gillespie, who now works as a Life Force counsellor, said she hoped her book would fulfill a similar role.

“I really want people to understand that there’s life after cancer but also that it’s okay to be down and feel negative at times,” she said. “Being open about what’s going on inside of you is a vital part of the healing process.”

Jane Gillespie is one of Life Force Cancer Foundation’s Counsellors. Life Force is a non-profit organisation, providing emotional/psychosocial support for people dealing with the experience of cancer, through a range of support programs and therapies including group work and meditation, counselling special and retreats. Support groups are held weekly in Sydney’s metropolitan area.

More information about Jane or Life Force can be found at these websites;

www.janegillespie.com.au                         www.lifeforce.org.au

 

CAN COUNSELLING HELP CANCER PATIENTS AND THEIR FAMILIES?

Receiving a diagnosis of cancer is a traumatic experience. One minute you’re ‘normal’ and the next your entire life has been turned upside down.

despairIt can be hard, even impossible, to talk to family members or friends about the roller-coaster of emotions that you have been commandeered into riding. When someone is diagnosed with cancer, they and their family can feel shocked, disbelieving, frightened, without direction or simply numb. Talking things through in confidence with someone who understands the emotional challenges of cancer can be extremely helpful.

Speaking individually to an experienced cancer counsellor can ease the sense of isolation you may feel and help you to find ways of facing the challenges ahead. This also applies to family members, friends and colleagues. By talking privately to a counsellor they can explore their anxiety, grief and any other emotions openly and honestly without needing to shield the person who is ill.

Why cancer counselling?

Research shows that counselling can be significantly useful in helping individuals and families face and meet the many challenges that a cancer diagnosis brings with it. This has been demonstrated to improve their quality of life.

During counselling, patients and families can learn how to cope more easily with their emotional issues. This helps them to communicate their needs better when speaking to Health professionals.

Counselling helps in easing any tension in relationships with family and friends. Optimistic but realistic outlooks replace the burden of positive expectations. Just saying “I’m being positive” doesn’t actually mean much, although being optimistic can always help you to enjoy life more in the here and now. However, if fears are present (and why wouldn’t they be?), then it is healthy to talk about these and get them out into the light of day.

How might you feel?

Some responses that people may feel when they are told they have cancer:

  • Shock: “What?? No!”
  • Denial / Disbelief: “It’s a mistake, those aren’t MY test results.”
  • Withdrawal: “I can’t/don’t want to talk to anyone.”
  • Feeling isolated: “Nobody understands.”
  • Anger: (“*#@^!!!”)
  • Loss: “But I’ve so much more I want to do with my life.”
  • Body image issues: “Will I look like a freak?”
  • Fears associated with sexuality and intimacy: “No one will every desire me now.”
  • Fear and uncertainty: “What’s going to happen to me?”

Anything you feel is valid and deserves to be acknowledged, not only by those around you, but also by you, yourself.

Seeking individual counselling or becoming part of a support group may be where you can find this acknowledgment.

After a cancer diagnosis, you might feel as though you have no control over what is happening to you and this can be very frightening. Uncertainty is often one of the most difficult things to deal with. You might feel as though cancer and its treatment have taken total control of your life and this can lead to feelings of powerlessness.

Counselling allows you to take back some control over your life and provides you with some semblance of security again. It can help you to enjoy your life despite the illness.

While it can be terrifying to think about it, it is natural to want to know what is likely to happen to you, so that you can plan for your future.

Sorting out your affairs so that everything is in order can be very confronting but it can also be helpful. Even though it’s likely to be painful for you and your family to talk about dying, it can also provide an opportunity to talk about what is important to you all and develop deeper levels of intimacy with each other. Regardless of how long the cancer patient lives, everyone benefits by being open and honest about what they value in their relationships.

Many cancer patients feel as if they have lost control of their lives. Talking to a counsellor or others going through a similar experience can help you to regain a level of control over how you cope.

To find out about support groups go to http://www.lifeforce.org.au

© Jane Gillespie

 

Excellent resource for people with cancer

So often the emotional impact of being diagnosed with cancer is overlooked.  I’ve talked about this before but just found this excellent book produced by the National Cancer Institute in the United States: http://www.cancer.gov/cancertopics/takingtime/takingtime.pdf.

Just about everything written in this resonated with me.  I think this publication, or something very similar written by local cancer organisations, should be made available for everyone who has been diagnosed with cancer.

Highly recommended.

Jane Gillespie – google.com/+JANEGILLESPIEHolisticCounsellor

Update on my post cancer life

I found out today that book I was involved in putting together, “Finding Our Life Force”, has been reviewed on Stephanie Dowrick’s Universal Heart Book Club website (http://www.universalheartbookclub.com/2014/03/walter-mason-on-finding-our-life-force.html).

On checking this out and clicking on a link to my name [as you do :-)], I came across an article that was published online in 2010.  In January this year (2014) I celebrated my 20th Anniversary since being diagnosed with breast cancer so I thought it was time to update some things.  The article is below, with some amendments to make it more current:

“Jane Gillespie lives in Australia, where she worked with a cancer foundation for 14 years, has a private counselling practice and is an author.  She was not always so self-confident.  After surviving breast cancer, she fell apart.  She had professional counseling and joined a support group. She changed her life, her career, and found a new identity.   Jane tells her survivor story here.

Cancer – a Springboard

In 1994 I was a single parent caring for a disabled 16 year old, the only one of my three children still living at home. After my regular annual medical checkup, my doctor recommended that I have a routine mammogram, simply because of my age. How lucky was I! After this first ever mammogram, something suspicious was found and I was diagnosed with breast cancer. This necessitated a lumpectomy and axillary clearance followed by a total mastectomy and seven months of chemotherapy.

My Breakdown

Despite surviving the onslaught of treatment, a few months after this finished I had a breakdown. I had resigned from my job because life seemed too short to be doing something I wasn’t passionate about and my energy levels were so low I had to have some time out. While I was dealing with the disease I’d kept the lid firmly on my feelings about having to face my mortality, but not having work to go to and no more regular hospital visits meant that there was now nothing else to focus on. I couldn’t hide any longer.

Crisis of Identity

Ever since my daughter was born I had believed that my role was to take care of her until she died. Now here I was facing the possibility that I could die first and I agonized over what would become of her. It didn’t matter that my oncologist told me that my prognosis was good. I was convinced that I was going to die without ever having truly lived. My life now seemed to have been a waste. Sure, I’d raised three children, one with special needs, but I couldn’t see me anywhere in the picture. Until then, my whole reason for being was based around my family. I’d always seen myself as a daughter, wife, and mother. I had no sense of identity as an individual.

Help From a New Oncologist

I sent my daughter to live with her father and stepmother and moved to Sydney. Unfortunately, you can’t run away from yourself and I was still crippled by anxiety and panic attacks. Luckily my new oncologist referred me to a psychiatrist who worked with cancer patients. This doctor explained to me that many cancer survivors feel exactly the same way; why wouldn’t I? My whole life had been shaken to its core and my current feelings of grief at the loss of the life I had always known had brought up unresolved grief from the past.

Life Force Cancer Foundation

His prescription for me was to join a support group. My oncologist is one of the Patrons of Life Force Cancer Foundation, so I joined a Life Force support group. My despair about possibly not surviving my daughter could well have become a self-fulfilling prophecy and I believe to this day that attending those meetings saved my life. I was able to work through the grief I felt at the loss of my pre-cancer life. It was immaterial that I didn’t feel that life had amounted to very much. It was all I knew and I was floundering. The other group members let me be a mess for as long as I needed to and this was the best possible medicine for me at that time.

Regaining Confidence

After I’d regained some of my physical strength, I enrolled in a course for women wanting to re-enter the workforce. At the beginning I didn’t believe that I would ever be able to function competently again. I thought that in the unlikely event that anyone would ever want to employ me, I was incapable of learning new skills. However, by the end of the course my shattered confidence was starting to come back.

Career and Family Changes


I got a job as a part-time bank teller and also began a counseling course. I graduated two years later and joined the Life Force Cancer Foundation team. For the next 14 years I co-facilitated between one and four weekly support groups in Sydney for cancer patients and survivors, as well as rural weekend retreats for survivors, patients and caregivers. A year after I left my daughter, I brought her to Sydney. She lived on her own for 17 years, supported by an organization that assists people with disabilities to live independently. However, due to her disability her health began to suffer and she was spending more time in hospital than out of it. After a mammoth struggle, I managed to get funding for her and she now lives in a group home with two other people with the same syndrome. She is extremely happy there and we both have peace of mind now, knowing she will be safe and well looked after for the rest of her life.

Writing, Counseling, Public Speaking


Writing was something I’d loved as a teenager, but I somehow let it go after marriage. In 2000 I enrolled in a novel writing course. I eventually resigned from the bank in 2002 to set up my own counseling practice, and to write the ‘Great Australian Novel’. It took me 12 years but I have now finished the first draft of my novel and am in the process of editing and rewriting. In March 2007 Journey to Me was published. This is a memoir about my experience of surviving cancer and building a new life for myself. I have also had a novella published and have written several others. Writing is my creative outlet and I believe everyone needs something that brings them this kind of pleasure.

Even though I have retired from my work running cancer support groups, I still have my private counseling practice, specializing in grief and loss.

I was spokesperson for the Life Force Cancer Foundation while I worked as a counseling group facilitator and have retained a position on the Management Committee so am still happy to act as spokesperson if the opportunity arises. I occasionally speak at conferences, seminars and service groups about how it is never too late to change your life.

Civil Marriage Celebrant


I trained to become a Civil Marriage Celebrant and was appointed by the Australian Attorney-General in September 2004. Working with my private counseling clients can sometimes be draining and sad. However my role as a marriage celebrant, connecting with happy couples while they are planning their future lives together, balances everything nicely. It is important for me to feel that I make a difference to people’s lives and I believe both my careers help me to do this.

Painting My Life’s Canvas

Last year I was diagnosed with a nasty squamous cell carcinoma (SCC) on my neck and after having this surgically removed, I underwent daily sessions of radiotherapy, five days a week for four weeks. I was astonished at how destabilizing it was when I was given this news; it took me straight back to 1994 when I was diagnosed with breast cancer. This showed me just how lingering the effects of PTSD can be, because it immediately brought forth almost overwhelming anxiety again. Luckily this time I had the knowledge and tools to handle this and with the help of supportive friends and my family I was fairly quickly back on an even keel. I guess the main thing was that this time I knew to ask for help, whereas 20 years ago I felt that I had to do it on my own. Cancer may not be a death sentence, but it is a life sentence. I still live with the Sword of Damocles hanging over me. My diagnosis last year is proof that there are no guarantees. I will never view cancer as a blessing in my life; more like a blunt instrument! However, it did become the springboard for me to make a fulfilling and joyful new life where I have a sense of who I am, just as Me. I love this saying by Danny Kaye: Life is a great big canvas and you should throw as much paint on it as you can.”

(c) 2014 Jane Gillespie – google.com/+JANEGILLESPIEHolisticCounsellor

Grief treated as mental illness!

Years ago I heard a very disturbing story about a young woman who had a bilateral mastectomy and ended up in the psychiatric ward of her local hospital. 

Through various contacts I was able to arrange to speak face to face with Gemma* and verify the pertinent facts.

She had found some suspicious lumps in both her breasts and despite being told that these were ‘only calcification’, she did some research on the Internet and discovered that calcification can indeed turn into cancer.  Because she was a single mother with two young  girls (aged 9 and 11) to raise, she wasn’t prepared to run the risk of them possibly losing their mum before they were grown-up so she decided to have both her breasts removed.

The surgery was performed by a breast surgeon and she was relieved to think that she needn’t live with the spectre of cancer hanging over her.  However, she had considerable post-operative pain that the surgeon dismissed as histrionics and she was sent home from hospital with no discharge plan in place.

No one took the time to find out what support she might have at home and she was told to take Panadol if the pain was severe.

Gemma found it impossible to sit up again after she lay down and spent her first night at home in agony, eventually wetting the bed because she was unable to get up to go to the toilet.  Her daughters’ bedroom was at the back of the house and hers at the front, so they couldn’t hear her call for help.  And realistically, what could these two children have done for their mother?

It’s tempting to ask why she didn’t speak up and explain her home situation but the responsibility rested with the hospital to ask the right questions.  When faced with momentous circumstances many people don’t function in fully adult ways and this young woman needed someone to take the time to make sure that she had a support network in place.

Friends who had minded the children for the few days Gemma was in hospital couldn’t keep them any longer because they were moving to a different State and her boyfriend was overseas at the time.  There was no one else to look after them and because no one asked the right questions or told Gemma that services could be set up to get her little family safely through her recovery period, she felt she had no option except to go home and look after them herself.

She also wasn’t prepared for the overwhelming grief that she experienced when she finally plucked up the courage to look at her chest. When her boyfriend returned he didn’t understand that her constant crying and withdrawal were signs of depression. Gemma had suffered depression in the past; how could the surgeon or hospital not know this?  Obviously she hadn’t told them, but why wasn’t she asked how she was coping or how she would manage when she went home?

Peter* had no experience with depression and had no clue how to treat her.  His solution was to tell her to ‘get over it’, ‘be grateful she didn’t have cancer’ and ‘she had chosen to have her breasts removed’.  Eventually he ended the relationship.

This was the final straw for Gemma and she took an overdose of sleeping pills. 

She left a note that her older daughter found, telling them to contact Peter because he would look after them.  She also said where she was going so it seems clear that she didn’t really want to kill herself.  Luckily Peter found her and took her to the hospital where she was admitted to the psychiatric ward.

Here she was pumped full of sedatives to keep her quiet, but refused pain medication despite still suffering since her surgery.  Four days later she was finally seen by a psychiatrist who thought to ask her what had happened in her life recently.

Luckily this doctor realised that she needed counselling, not locking up, and arranged for the hospital Social Worker to sort out home care for her until she was fully recovered and appointments with a psychologist, as well as medication to help her function in the short term.

In my conversation with Gemma it was apparent that she was dealing with a high level of grief.  Every cancer patient (or in her case, potential cancer patient) will experience a sense of loss to varying degrees.  Their progress through this grief will depend on the support network that they have and the ability of professionals and family and friends to allow them to ‘tell their story’ as many times as they need to tell it, until they have come to terms with their new reality.  This needs to be done without judgment or advice on how to ‘fix it’.

Gemma’s case was more extreme than most, but given the lack of any planning by the hospital regarding her post-surgery discharge and her personal circumstances, perhaps not really so surprising.

Thankfully these days it is unlikely that anyone would slip through the cracks to the same extent that Gemma did, as it is now generally recognised that duty of care doesn’t end with a patient’s discharge from hospital.  However, I believe that there are still times when our over-stretched hospitals don’t follow their own protocols for discharging patients.

So if you know someone who is going through a traumatic time, please ask the question: ‘Are you okay?’ If the answer is yes but you doubt this is true, please advocate on behalf of your family member/friend to make sure that there is indeed a functioning support system in place before a patient is discharged from hospital or if they seem to be struggling down the track.  Don’t just assume that because it happened a while ago (regardless of what ‘it’ was), that the person who went through the experience is okay now.

* Names changed

I recommend that if you do consult Dr Google, always discuss your findings with your own medical advisers

© Jane Gillespie

http://janegillespie.com.au/counsellor.html

Update

It’s now two weeks since I had my last radiotherapy treatment.  I had 20 treatments, one every weekday.  My energy levels plummeted to the extent that by weeks three and four, I found myself nodding off in the supermarket car park, in the hospital waiting room and in my car parked outside my home only maybe 20 metres from the front door.  I felt just like a marionette when the puppet master had taken a tea break, leaving me collapsed in a tangle of disjointed limbs. For the last week this level of tiredness has been improving slowly and I now only need a rest – as opposed to an hour-long sleep – and only every second day.

Radiotherapy continues to work for several weeks after the last session and all last week my neck became more and more tender, progressing to really painful.  However, the top layer of skin has now peeled off, leaving a new very pink layer with just an outline of brown burnt skin.  Although still sensitive, this is nowhere near as painful.

My reward to myself for having to undergo this latest health challenge is to go to Bali for a couple of weeks with my best friend and I’m hoping that my neck will have shed all the burnt skin and be well on the way to rejuvenating itself before we get on the plane.  Hopefully that really will be the end of this unexpected and unlooked for experience.

What I’ve learned from this latest journey with cancer is that I have a wonderful support network of people in my life.  These angels checked in with me regularly with offers of help with whatever I needed or just to say “Hi, how’s it going”.  The people I only heard from once or not at all surprised me.  If I’m honest, it does feel hurtful, especially considering who these particular people are. Having said that, I guess they had stuff going on in their own lives and now that I’m back to normal again (whatever that is!) I hope to reconnect with the ones who seemed to ‘head for the hills’.

I know we shouldn’t project into the future but having started out well, 2013 has not been my favourite year; I’m really hoping for a better 2014.

© Jane Gillespie 2013 – Author, “Journey to Me”.  www.yourlife-celebrated.com.au

Confession

In my last post I said I was “a veteran of two cancer diagnoses”.  The truth is I am really only a veteran of one diagnosis, not two.  This is because I am only just about to start on treatment for my second confrontation with cancer (and a completely different type) so I’m very much a novice again.

What has confounded me is the degree of shock I felt when told that what was thought to be Keratoacanthoma (KA) was actually squamous cell carcinoma (SCC). KA is a common skin tumour that has traditionally been regarded as benign, but some of these tumours have been seen to transform into SCC. Most KAs resolve spontaneously, but an underlying squamous cell carcinoma cannot be ruled out without removal of the tumor and microscopic evaluation. Mine did turn out to be SCC and the surgical excision could have meant that there was nothing more to worry about. However invasion by cancer in a nerve ending showed up. I am SO glad that I sought an expert opinion on what the pin-head sized spot that grew to the size of a pea in less than a week could be and had it removed immediately! Because of the nerve involvement I was referred to a radiation oncologist and radiotherapy was recommended.

I was really knocked about by this news and couldn’t make a decision until I’d given myself a chance to regroup.   It goes to show how deep the trauma went at my first diagnosis even though that was 19 years ago.  I believe I’m grieving the fact that my world has been turned upside down again and the fact that this is a very common form of skin cancer with little likelihood of there being anything to worry about down the track doesn’t make any difference at all to how I feel right now.

I feel as though I’m suffering PTSD all over again.  While I have calmed down a lot since deciding to go ahead with radiation treatment I’m still battling incredible fatigue and a decidedly fuzzy head.  I’ve misplaced my incredibly expensive Bulgari glasses (I’m sure I haven’t lost them; I just can’t find them) and a couple of days ago I did my grocery shopping only to discover when everything had been scanned at the check-out that I’d left my credit card wallet at home and didn’t have enough cash to pay for everything. Sigh…

I’m having to pay attention to everything that I used to talk about when I facilitated cancer support groups.  I’m trying to be gentle with myself and ask for help if I need it but this is much easier said than done!

Treatment starts in just over a week and will continue every day Monday to Friday for four weeks.  I’m not looking forward to it but I know that techniques have improved a lot in the past few years so it’s quite easy to only target the affected area and there’s much less likelihood of collateral damage.

So there it is – another detour on the journey of life that I would never have taken voluntarily but it’s happened and I will get through it with support from incredible friends and family.  And this time around I will let people know what I need so I won’t end up as a basket-case again, like I was last time.

© Jane Gillespie 2013  Author of  “Journey to Me”  www.yourlifecelebrated.com.au

Think About Pink

I just came across this article from the New York Times in an old email folder and thought it well worth posting here.  I wonder if you agree with the author’s sentiments – I do!

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Think About Pink (NYT – November 12, 2010)

By PEGGY ORENSTEIN

A friend of mine’s 12-year-old daughter has taken to wearing a bracelet, one of those rubber, Lance Armstrong-style affairs, that says on it, “I ❤ Boobies.”

“Oh, yeah,” she said, vaguely, when questioned about it. “It’s for breast cancer.”

Really?

It’s hard to remember that, not so long ago, the phrase “breast cancer” was not something women spoke aloud, even among themselves. It wasn’t until the early 1970s, with the high-profile diagnoses of the former child star Shirley Temple Black, the first lady Betty Ford and Happy Rockefeller that the disease went public. A short time later, Betty Rollin, an NBC-TV correspondent, published the groundbreaking memoir “First You Cry.” Back then, her grief over losing her breast and the blow cancer dealt to her sex life was greeted with hostility by some critics and dismissed as frivolous. Mammography was just coming into use to detect early-stage tumors. The American Cancer Society was still resisting the idea of support groups for post-mastectomy patients. A woman like Rollin, some said, was supposed to be grateful that she qualified for a radical mastectomy, stuff a sock in her bra and get on with it.

Fast-forward to today, when, especially during October, everything from toilet paper to buckets of fried chicken to the chin straps of N.F.L. players look as if they have been steeped in Pepto. If the goal was “awareness,” that has surely been met — largely, you could argue, because corporations recognized that with virtually no effort (and often minimal monetary contribution), going pink made them a lot of green.

But a funny thing happened on the way to destigmatization. The experience of actual women with cancer, women like Rollin, Black, Ford and Rockefeller — women like me — got lost. Rather than truly breaking silences, acceptable narratives of coping emerged, each tied up with a pretty pink bow. There were the pink teddy bears that, as Barbara Ehrenreich observed, infantilized patients in a reassuringly feminine fashion. “Men diagnosed with prostate cancer do not receive gifts of Matchbox cars,” she wrote in her book “Bright-Sided.”

Alternatively, there are what Gayle Sulik, author of “Pink Ribbon Blues,” calls “She-roes” — rhymes with “heroes.” These aggressive warriors in heels kick cancer’s butt (and look fab doing it). Like the bear huggers, they say what people want to hear: that not only have they survived cancer, but the disease has made them better people and better women. She-roes, it goes without saying, do not contract late-stage disease, nor do they die.

That rubber bracelet is part of a newer, though related, trend: the sexualization of breast cancer. Hot breast cancer. Saucy breast cancer. Titillating breast cancer! The pain of “First You Cry” has been replaced by the celebration of “Crazy Sexy Cancer,” the title of a documentary about a woman “looking for a cure and finding her life.”

Sassy retail campaigns have sprung up everywhere, purporting to “support the cause.” There is Save the Ta-Tas (a line that includes T-shirts and a liquid soap called Boob Lube), Save Second Base, Project Boobies (the slogan on its T-shirts promoting self-exam reads, “I grab a feel so cancer can’t steal,” though the placement of its hot-pink handprints makes it virtually impossible for them to belong to the shirt’s wearer). There is the coy Save the Girls campaign, whose T-shirt I saw in the window of my local Y.M.C.A. And there is “I ❤ Boobies” itself, manufactured by an organization called Keep a Breast (get it?).

Sexy breast cancer tends to focus on the youth market, but beyond that, its agenda is, at best, mushy. The Keep a Breast Foundation, according to its Web site, aims to “help eradicate breast cancer by exposing young people to methods of prevention, early detection and support.” If only it were that simple. It also strives to make discussion of cancer “positive and upbeat.” Several other groups dedicate a (typically unspecified) portion of their profits to “educate” about self-exam, though there is little evidence of its efficacy. Or they erroneously tout mammography as “prevention.”

There’s no question that many women, myself included, experience breast cancer as an assault on our femininity. Feeling sexual in the wake of mastectomy, lumpectomy, radiation or chemo is a struggle, one that may or may not result in a new, deeper understanding of yourself. While Betty Rollin acknowledged such visceral feelings about breasts, she never reduced herself to them. And in the 1990s, the fashion model Matuschka’s notorious photo of her own mastectomy scar (published on the cover of this magazine) demanded that the viewer, like breast-­cancer patients themselves, confront and even find beauty in the damage.

By contrast, today’s fetishizing of breasts comes at the expense of the bodies, hearts and minds attached to them. Forget Save the Ta-Tas: how about save the woman? How about “I ❤ My 72-Year-Old One-Boobied Granny?” After all, statistically, that’s whose “second base” is truly at risk.

Rather than being playful, which is what these campaigns are after, sexy cancer suppresses discussion of real cancer, rendering its sufferers — the ones whom all this is supposed to be for — invisible. It also reinforces the idea that breasts are the fundamental, defining aspect of femininity. My friend’s daughter may have been uncertain about what her bracelet “for breast cancer” meant, but I am betting she got that femininity equation loud and clear.

I hate to be a buzz kill, but breast cancer is just not sexy. It’s not ennobling. It’s not a feminine rite of passage. And, though it pains me to say it, it’s also not very much fun. I get that the irreverence is meant to combat crisis fatigue, the complacency brought on by the annual onslaught of pink, yet it similarly risks turning people cynical. By making consumers feel good without actually doing anything meaningful, it discourages understanding, undermining the search for better detection, safer treatments, causes and cures for a disease that still afflicts 250,000 women annually (and speaking of figures, the number who die has remained unchanged — hovering around 40,000 — for more than a decade).

As for me, I bear in mind the final statement that a college pal of mine who was dying of breast cancer (last October, in the midst of all that sexy pink) made to her younger brother. She was about to leave two young sons to grow up without a mother; her husband to muddle through without his wife. She could barely speak at the time, barely breathe. But when her brother leaned forward, she whispered two words in his ear: “This sucks.”

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As a breast cancer survivor myself I can relate to Peggy Orenstein’s feelings.  While I applaud the efforts of various foundations to raise money to help with research into the causes of, and hopefully one day a cure for, breast cancer I think there is definitely over-kill in the way pink is used to push the message about early detection, mammography and so on.

Where is the support for those (mostly) women who are living with the disease and/or the effects of treatment?  Many people don’t realise that while certain drugs can effectively kill the dreaded cancer cells (at least for the time being) there are often permanent and distressing changes that have to be lived with that impact on quality of life.  But the message seems to be that these people should be grateful that they’ve survived.  As I’m sure they are – but at what cost?

I’d love to see a PINK campaign that acknowledges and validates the reality of life for someone who has or has had breast cancer.  Life definitely isn’t all roses (pink or otherwise) and everyone deserves the recognition that whether you’re on your death bed or simply struggling to get through treatment that will make you better, it does indeed “suck”.  Big Time.

When I wrote my book, Journey to Me, I was advised to “tone it down”, to take out a lot of what I’d written about what it really was like going through surgery and chemo.  I stuck to my guns though because I was fed up with people pussy-footing around what it’s really like.  I would have handled things a lot better if I’d been better prepared for the shock of seeing how my chest was concave post-mastectomy (having prepared myself for it to be flat), losing my hair (the worst moment was when it started to fall out in the shower and clogged the drain), the humiliation of suffering uncontrollable diarrhoea and having to wash my bedding at 2 o’clock in the morning…

Pink campaigns to educate women about how to reduce the number of people who are diagnosed with breast cancer are all well and good but where are the campaigns to raise awareness of the need for people to know how to cope with the actual disease?

Yes, I did get through it, and that’s a big part of the message I wanted to get out there; that if you do survive you can go on to live a fulfilling life.  But I will NEVER say that I’m grateful that cancer gave me the opportunity to forge the great life I have today.  I would much prefer to have got here without cancer, thanks very much!

And some people, like Peggy Orenstein’s college friend, don’t survive; that needs to be talked about too.   So let’s all push for pink campaigns that address the down and dirty reality of breast cancer and stop pretending that it is less than it is – a truly traumatic time in anyone’s life.

(Journey to Me can be purchased through http://www.janegillespie.net)

Jane Gillespie © 2013

Calling all cancer patients – just BE POSITIVE!

“You just have to be positive and you’ll be okay!”

GrumpyCatNotPositive

How many times have you heard someone say this?   It really, really isn’t that simple.  In fact, to say that to someone who has been diagnosed with cancer, even when meant kindly, isn’t helpful at all.

How does it feel to hear this when your life has been turned upside-down, you’re maybe struggling with the side-effects of treatment and in a deep dark hole grieving the loss of your old life or hopes and dreams for your future?  Does this platitude make you feel better?

When I was first diagnosed I experienced emotions ranging from feeling like a failure because I got cancer in the first place, to wanting to smack anyone who told me to ‘just be positive’!

It’s been a popular notion for many years that if you have a positive attitude you won’t get cancer or you can get rid of it or it won’t come back again.  To be told that you ‘have’ to be positive places an enormous weight  onto your already burdened shoulders.

As if it isn’t bad enough just dealing with the physical aspect of cancer treatment, even with a good prognosis it’s absolutely normal question whether you are going to survive.  If you believed that you had many more years/decades ahead of you and now you’ve been confronted with your mortality, it’s perfectly natural to be depressed and frightened.

If you have cancer and start believing that all you need is to be positive, how will you feel if despite the best efforts of your doctors and other health advisers, your cancer doesn’t respond to treatment?  Does this make you a failure?  Does it mean you didn’t try hard enough?  The answer to both those questions is a resounding NO.

It’s vital that you take this misguided belief and chuck it as far away from you as you can.  Imagine you’re on top of a high cliff and the be-positive notion is something you can pick up and hurl out into the depths of the ocean.

There is nothing wrong with being optimistic, which is a very different thing to the popular interpretation of being positive.  Being optimistic still allows for times when you feel afraid or worried.  Whatever emotions you experience are okay; feelings aren’t good or bad, they just are.  If you don’t feel as though you have permission to feel down sometimes rather than up all the time, you run the risk of being stuck in the uncomfortable feelings.  You need to acknowledge these emotions before you can release them.  Pretending by trying to be positive all the time, only makes those feelings stronger and harder to let go.

The best thing to do when you’re feeling depressed, anxious or just plain terrified, is to talk to someone who will listen without trying to fix things for you

Finding somewhere to off-load everything you’re feeling takes the power out of your challenging emotions and you will move to a calmer place much more quickly.

This is where cancer support groups can be very helpful because everyone there ‘gets it’.  To be validated for what you are feeling is the best way to be able to eventually move forward.  Each time you are acknowledged for what you are going through, those feelings become less powerful.

When people tell you that you have to be positive, what they are doing is making it easier for themselves to not have to worry about you.  Guess what, they are coming from fear too.

The best way to respond when someone tells you to be positive is to let them know that this doesn’t make you feel better and in fact is unhelpful.  Perhaps they need to walk in your shoes to fully understand, but most people will back off once you tell them how you feel when they give you this sort of advice.

Unless you have asked for their opinion or advice no one has the right to give it to you.

And even if you did ask them, you still have the right to say what feels helpful and what doesn’t.

If being honest with these people doesn’t work then whenever you see them I suggest you move away from them as soon as you can.  Surround yourself with people who are brave enough to be with you when you feel depressed or frightened and offer nothing more than their accepting presence.

For those people who don’t know what to do when faced with someone who is distressed, it’s really easy – you don’t have to DO anything!  If you feel you must say something, make it as simple as, “I can see you’re having a tough time today.  I’m so sorry”.

One thing I am positive about is that anyone who can sit with me when I’m in emotional pain, without telling me what to do, is a true friend.

© Jane Gillespie

google.com/+JANEGILLESPIEHolisticCounsellor

Make Time for your Breasts!

Isn’t that a great title?  It’s from a page on a website called Pinc Box and I think all women should read it.  Actually, everyone should read it, because then men could encourage the women in their lives to take the time to have regular breast check-ups. Click here to read: Make Time For Your Breasts

Breast Cancer Surgery Statistics from PincBox
Send Breast Cancer Gifts from PincBox!

Breast cancer is the most prevalent type of cancer in women, so it makes sense to be vigilant and have regular checks.  Whether you do this monthly yourself (a great idea) or at least have your doctor do a proper breast examination every year and have a mammogram every two years once you turn 40, some kind of check-up is vital for early detection.  If you feel a lump, get yourself off to your GP quick sticks!  It may not be anything sinister but it’s much better to find out early if there is something to worry about.  Breast cancer caught early is very treatable.  So, when did you last check your breasts???

www.janegillespie.net