Category Archives: Inspirational

Flight MH370

The recent announcement that Malaysian Airlines Flight 370 has crashed into the sea and that all lives have been lost has killed any remaining hope for the families and friends of the passengers and crew onboard. Our hearts must go out to everyone involved in this tragedy.

It will be almost impossible for some of those who are directly affected to let go of the need for answers. What happened? Where did the plane go down? Who is responsible? Sadly we may never have answers to any of these questions.

I personally think that the media have not behaved well; there has been an almost gleeful desire to lay the blame on the pilot and/or co-pilot. Yet how can we know exactly what happened? This finger pointing leaves the families of the pilots, who will be suffering as much grief as anyone else, with the added burden of blame and/or shame due to the theory that it was either a terrorist attack planned by one or both of the pilots or a suicide mission.

I simply cannot get my head around the idea of a terrorist attack that leaves absolutely no clue as to who perpetrated it or what point they would have been trying to make. Also, why would someone who wanted to end their own life take a planeload of innocent people with them?

While I understand the need to find someone – anyone – to blame, it serves no purpose to make accusations when there is no definitive proof. I am also well aware that the theories about the pilots could turn out to be true but I will always believe in innocent until proven guilty. Journalism should be about telling the truth, not pushing a particular unproven viewpoint.

This is an opinion piece but I am not saying that anyone has to agree with my opinion. I am saying that I don’t know the facts, whereas some journalists seem to have decided that they do know all the answers and are quite happy to vilify people who have not been proven guilty of anything.

While search efforts continue in an attempt to find some trace of the wreckage and hopefully the Black Box, the overriding need of the bereaved will be a sense of community. When people go through the same or similar tragedies, the pain can be ameliorated if it is shared with others who are experiencing or have experienced similar terrible losses.

I believe that it’s probably too early for counselling or psychological support. While not impossible, it is highly unlikely that trained professionals will have had similar experiences to these grieving people. Right now, they simply need to be able to talk and talk and talk to others who truly can understand. Sometimes this is all that is needed, but qualified counselling would be appropriate at a later date if necessary.

Whatever emotions those left behind have, whatever behaviours they exhibit, all should be deemed to be normal in these circumstances. I hope that they are given the opportunity to bond with fellow sufferers without too much interference – no matter how well meant.

© 2014 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

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

CARING FOR SOMEONE WITH CANCER

You will probably suffer from both physical and emotional exhaustion before too long if you are the main carer for someone with cancer. The first thing you must do is ask for help.

Life goes on even while you are caring for the sick person.  Kids still have to do their homework, clothes still need to be washed and ironed, bills need to be paid, gardens need tending, bathrooms need cleaning and shopping and cooking have to be taken care of.

Other family members and friends are usually only too willing to do what they can, but sometimes they don’t know what they can do, so make a list of things that you know would help you.  They will be grateful for your suggestions.  Some things on this list might be:

  • baby-sitting
  • cooking (and freezing) meals
  • providing transport for medical appointments
  • taking children to weekend sport
  • offering to sit with the patient while you do other things
  • mowing the lawns and/or weeding garden beds

Make sure some of those other things include ‘time out’ for you, for example:

  • go to a movie or a concert
  • meet a friend for coffee or lunch
  • go for a walk in the park

It serves no purpose if you fall in a heap. 

You must take care of yourself if you are going to be able to care for anyone else.

Now is the time to call in all favours.

You need to be guided by what the cancer patient wants and always try to respond openly to conversations that they initiate. Never, ever say to someone who tries to tell you that they are afraid of dying that they ‘mustn’t talk like that’.

Talking about fears doesn’t make them happen and it’s much healthier to get those feelings out into the open.  And if the cancer is terminal, it’s really cruel not to let people talk about what it means to them to be coming to the end of their life.  If necessary arrange for someone (minister, trusted friend, professional counsellor, etc.) to facilitate a meeting so that you can talk about these big, scary things without it feeling like it’s going to end in disaster.

You really need to de-brief your fears, exhaustion, frustration and so on – all those emotions that are raging through you, that you can’t and don’t want to share with the person you’re caring for.

Attending a support groups of other cancer carers can help take away feelings of isolation; “nobody else understands what it’s like for me”. It is liberating to hear that others sometimes feel  overwhelmed, despairing, terrified and yes, even furious with the person who has cancer.  No one there will judge you (it’s easy to guess that you’re doing a pretty good job of that yourself!) and it helps to know that all those feelings are a normal reaction to an incredibly stressful situation. I believe it is vital for carers to have somewhere to debrief what their life is like, away from the person they are caring for, so that they can be completely honest about what is going on for them without having to worry about hurting anyone else.

In Sydney, Life Force Cancer Foundation runs weekly support groups for carers in the Inner West and for patients & survivors in the Eastern Suburbs and Inner West.  http://lifeforce.org.au/support-groups/

I also recommend that you talk to hospital social workers to find out what other assistance is available.  Because the system is so stretched, help usually isn’t offered unless you ask for it.  Be the squeaky wheel and insist on seeing the relevant social worker.

This is always going to be an extremely challenging time but if you look after yourself as much as possible, it doesn’t have to be totally overwhelming.

(c) Jane Gillespie 2017

 

How Counselling Works

When you’re feeling overwhelmed, stressed, depressed, anxious, alone or just not coping, counselling can support you and help you to understand how you respond or react to life’s happenings and why.

Being supported through difficult times can be a catalyst for change or help you adjust to or accept challenging circumstances.

What you can gain from counselling

• Personal Growth – a greater awareness of your thoughts, feelings and how you behave

• Moving forward – an awareness of any repeating patterns or behaviours in your life

• Sense of empowerment – learn to recognize old behaviours and do things differently

• Shared perspective – feel validated and supported in your efforts

• Structured support – gentle guidance in setting and achieving your goals

The relationship between counsellor and client

Working closely with another human being who takes the time to really listen and understand you and your concerns – without trying to ‘fix’ things for you – can be very helpful if you are going through a difficult period in your life.  The counsellor focuses on your current needs and problems in each session, working ‘in the moment’.

How often do you see a counsellor?

Clients usually come once a week for six to eight sessions.  You then reassess your needs together and may have several more appointments at less frequent intervals.  Sessions usually last for 60 minutes.

Confidentiality

It is normal for counsellors to make some notes after a session; this is to ensure progress and continuity in your treatment.  Sessions are private and confidential and any personal details or notes taken are stored under lock and key.

Details regarding your counselling may be discussed with a supervisor because it is important for all counsellors to receive supervision from another trained practitioner to ensure they are properly serving your needs.  However, your anonymity will always be preserved.

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How joining a cancer support group can help you in remission

It can be distressing trying to tell people who haven’t had cancer how it feels, no matter where you are on the journey.  However, this can be especially true for people who are in remission.

Popular mythology is that you’re okay now, you’re better, so why aren’t you celebrating?  Even the survivor often thinks this way and then feels guilty because this isn’t their truth.

The reality is that as more people survive cancer, it has become apparent that survivorship has its own challenges.  Often there are lifelong side effects as a result of treatment and while it’s great that you did survive, your new life can be very different to your pre-cancer one.

Even if most side effects eventually disappear it can take a long time to recover your energy and feel up to tackling the most mundane tasks.  The shock felt after receiving a diagnosis of a life threatening illness and the uncertainty about whether it will come back can take years to come to terms with.

Cancer treatment isn’t something anyone would volunteer for and the various regimens for it can be brutal.  The onslaught of surgery, toxic drugs and being burnt by radiation very often leaves psychological as well as physical scars.

The best way to deal with this is to talk with others who really do understand – fellow survivors.  By being able to express all your feelings about your cancer journey to people who have shared that experience is a valuable way of making sense of it.  This can be a great help when trying to work out what your new normal is and finding ways of accepting that.

With the best will in the world, it is impossible for people who have not been through it to really understand. Join a support group as soon as you can; you will find help and encouragement throughout the whole process.  However, it is never too late to join a group.

One member of the organization I work with (www.lifeforce.org.au) came to us 16 years after his diagnosis and discovered why he hadn’t felt truly alive for all that time: he had never had anywhere to process what he’d been through.

This quote says it all (from Bill W, one of the founders of AA):

“All we have to share is our experience; what we have not experienced, we cannot share.”

This is not only true for cancer patients, survivors and their families but for anyone who has had life throw a curve ball at them.

Never be afraid to ask for help.  It isn’t a sign of weakness but of strength, and shows a willingness to do whatever you can to get your life back on track.

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HAVE YOU BEEN DIAGNOSED WITH CANCER?

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.

It 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 to a counsellor they can explore their concerns and anxieties openly 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 shown 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 you might have to receiving a diagnosis of 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.

Seeking individual counselling or becoming part of a support group can help you to 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 often leads 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 is often 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 can help you to regain a level of control over how you cope.

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