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.

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

 

WE NEED TO TELL OUR STORIES UNTIL WE DON’T

Have you ever noticed how when something unexpected happens to people, especially if it’s a shock or traumatic in any way, they tell everyone they see afterwards all about it? They also often tell the story again and again to the same people. It can be hard to avoid an invisible roll-of-the-eyes and a silent commentary along the line of, “here we go again”.

However, try to put yourself in their place and imagine that you have, for example, a minor car accident on your way to work. Your car isn’t badly damaged and you can eventually be on your way, albeit now running late for work. The first thing you are likely to do when you arrive is to announce the accident to everyone. Will that be the end of it? I don’t think so. Maybe your neck will start to hurt and you get a splitting headache because you’ve suffered a whiplash injury. You will undoubtedly tell people about this and it will probably necessitate you telling the whole story of the accident over again. You may find that you continue to tell the story of this incident for days or even weeks afterwards.  This is how you process what has happened to you and helps you to get over the shock you have suffered.

A few years ago someone I know ruined Christmas for everyone else. This person has a mental illness and was under a lot of stress but their behaviour was incredibly abusive and had everyone walking on eggshells for fear of setting off another torrent of rage. The end result has been a fracturing of several family relationships. The whole event left everyone feeling battered and shattered. Even now, some of us feel as though our hearts have been lacerated because we’ve had to distance ourselves from this person.

For months afterwards I personally kept telling friends who weren’t there about how it had felt; the shock, disbelief, anger and fear caused by the perpetrator of the abuse.  Eventually we were all able to move on and accept that it was that person’s mental instability that caused their behaviour . However, I am certain that I was only able to do this because I talked about it so many times with close friends, other family members and a therapist. There was something about letting all those awful feelings out that allowed me to let them go, simply because I had acknowledged them and had them validated by people who have listened to me.

So the next time you feel impatient hearing someone else’s story for the second or fifth or tenth time, try to be present with them, make sympathetic noises and don’t offer advice on what they ‘should’ be doing. When they’re ready, they will stop telling their story because they will no longer need to.

© Jane Gillespie 2017

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

 

 

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.

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 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

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

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