Dying For Beginners

Life Force Cancer Foundation

by Jane Gillespie

Life Force saved my life. Maybe that sounds melodramatic, but it felt true for me when I crashed and burnt emotionally and psychologically after cancer treatment in 1994. Back then there was little recognition that emotional counselling and support needs to be part of the whole treatment of cancer.

What I have since learned is that a diagnosis of a life-threatening illness is a realistic trauma in anyone’s life. My pre-cancer life no longer existed, my treatment felt like torture and although it was successful, I still live with the knowledge that cancer could come back at any time. It took many years for me to stop thinking that each little ache and pain was bone cancer or every headache a brain tumour. While it’s good to get the tick of health, I still feel uneasy in the lead-up to my annual mammograms and checkups with my oncologist; what if this time everything isn’t okay?

I believe all cancer patients should be given information about emotional support, whether or not they appear to need it. I was a compliant patient during my operations and chemotherapy and put on a brave face, when inside I was feeling incredibly little and absolutely terrified. Because I didn’t fall apart, no-one told me it was normal to have feelings ranging from devastation, rage and despair to grief and total panic.

During my treatment I tried to keep my life as normal as possible. I’m not even sure I had room to deal with my emotions then, but it would have been a great help just to have known that my night terrors were part of a grieving process and perfectly normal.

I attended the local breast cancer support group a couple of times and was also put in touch with a volunteer, who spoke to me on the phone twice. However, the support group was more of an information source, which was valuable in its own way, but it didn’t address my emotional needs.

The volunteer allotted to me talked about what a loving, supportive husband she had and how her family kept her on her toes by insisting she go bushwalking with them. No, she didn’t feel devastated by the loss of her breast and several years down the track everything in her life was marvellous.

I felt there must be something wrong with me, because I didn’t want to hear how marvellous her life was when mine felt like hell and I had an ex-husband who couldn’t find a way to look after our disabled 16-year-old daughter more often while I was struggling just to survive chemotherapy, let alone cancer. Also, my self-esteem was shattered. If a man left me when I was whole, who would want me now I was mutilated?

The messages I got were that I needed to be brave and positive; people really didn’t want to hear what my true feelings were. I was also frightened to be open with my mother and adult children, because I didn’t want to upset them.

Emotions pushed down do not go away. They bide their time and will eventually be noticed. In my case, I had a complete emotional break-down six weeks after my treatment ended. I sent my daughter to live with her father and moved to Sydney but of course, ‘wherever you go, there you are’! I was a total mess, but fortunately, my new oncologist is one of the patrons of Life Force Cancer Foundation. He recommended I attend one of their support groups and for the first time, I had a forum to talk about what it really felt like to have cancer.

Despite a good prognosis, I was convinced I was going to die soon. What became my true healing was finding out that other people had the same tumultuous emotions. Having a safe place to express my fears, anger and grief, and not be told that I was irrational, not be told that I must be positive, not be told to put it all behind me, not be told to forget that I had ever had cancer and just get on with my life, was the best medicine for me at that time.

Sharing my experience of cancer with other group members freed me from the desperate need to try and share it with other people who were uncomfortable with or afraid of these big feelings. I was then able to relate to people outside the group on other matters.

Being able to express all these so-called ‘negative’ sentiments without being judged, in a group of people who really knew what I was talking about, enabled me to move through them and arrive at that much-touted positive place.

The same kind of support is vital for people actually facing death due to their illness; they too need to be given permission to talk about what this means to them. Pretending that feelings of loss, despair, terror, grief and rage do not exist doesn’t make them go away. Denying reality does not prevent the inevitable from happening; and neither does talking about death hasten its arrival. Denial precludes the possibility of deepening relationships with those closest to us and often means that people are not able to say goodbye.

I know I am very fortunate to have survived cancer, but I never take life for granted now and try to use that experience as a motivation to live for today, to appreciate each moment, just in case it’s my last.

Because I believe so much in the power of the work that Life Force does in supporting people affected by cancer, I am now a qualified counsellor and co-facilitate the Life Force support groups.

www.lifeforce.org.au

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