Category Archives: Depression

Collective Trauma

I recently read an article about collective trauma in relation to how people who lived through Melbourne’s months-long lockdown have been affected: https://tinyurl.com/y4tglv6t

What strikes me is that “collective trauma” could well be a definition for what cancer patients, survivors and their families and loved ones experience. No one who hasn’t been to that same dark place can truly understand the damage done to the cancer patient’s equilibrium, sense of self and trust in their own bodies. People close to them, principally carers, are also strongly affected.

Many cancer patients struggle to overcome feelings of terror at the thought that they might die, or that they will never work again, or no one will love them anymore because they look different.  Those who survive often doesn’t understand why they can’t go back to being how and who they were before their diagnosis. Family, friends, colleagues and employers can sometimes become impatient with them for not simply getting on with their lives.

 

Once you’ve had cancer, your life will never be the same again and there is a grieving process that needs to take place regarding the loss of your BC (before cancer) life.  Your hopes and dreams may have been dashed – perhaps you are now infertile, or you’ve lost your dream job or your plans for an exciting retirement have been squashed.  Or you could struggle to come to terms with changes in your physical appearance and feeling exhausted all the time. This might be because a body part has been amputated, life-saving surgery may have left disfiguring scars, you could suffer a permanent disability as a result of cancer treatments and your energy levels may never get back to what they were pre-cancer. 

Life Force, the Cancer Foundation that I work with, recognises the trauma that a cancer diagnosis can cause and runs weekly support groups where cancer patients and survivors can share with others who genuinely ‘get‘ how they feel about their experience. There is something about the shared experience that can be incredibly healing. There is no quick fix and it sometimes takes many months, if not years, for people to eventually feel that they have come to terms with their new reality. But when they do, there is an enormous sense of relief, gratitude that they are still here to make a new, albeit different, life and the ability to embrace the future.

For those whose illness is terminal, having somewhere to share everything they feel about that is absolutely vital, especially if their families refuse to discuss the possibility of death.

It is essential for your daily well-being to find people who are comfortable allowing you to be truly authentic when talking about how devastating chemo and/or radiotherapy is or was; how frightened you are that your cancer might return; how blindsided you are by people who simply disappeared from your life; or enraged that you got cancer in the first place when you’ve always lived a very healthy life but now you’re told that you’re not going to survive. To be able to express everything you’re feeling, without worrying that you might be upsetting those close to you or be told that you shouldn’t feel that way is empowering.  If we simply push the uncomfortable feelings down, they don’t go away and there is a very real risk of becoming stuck, which can hinder the recovery process and definitely impact on the quality of everyday life.

Life Force group facilitators have had their own brush with cancer, so can genuinely relate. If you would like to join our Zoom support groups (one for patients & survivors and a separate bereavement/carers group, please visit Life Force’s website: www.lifeforce.org.au or email me at jane@lifeforce.org.au.  

JANE GILLESPIE, Cancer Survivor, Counsellor and Support Group Facilitator Mob: 0412 643 751

How do you talk to someone who has just been told they have cancer?

What should you do if you find out that a friend had been diagnosed with cancer?  Some people are really good at this but others feel at a loss to know what to say. Some even say things that are not helpful at all.

I can give you my point of view because I’ve had breast cancer that needed a total mastectomy and chemotherapy, a Squamous Cell Carcinoma (SCC) that required surgery and radiotherapy and many BCCs that have had to be cut out.

As a facilitator of support groups for cancer patients for almost 20 years I’ve heard the same thing over and over again about how some responses from family and friends have felt truly horrible. Here are some things people said to me that I never found helpful. In fact they really upset me!

“Oh well, survival rates are really good today.”  This is irrelevant when someone is in shock, trying to come to terms with the news.

“I’m sure you/he/she will be all right.”  Actually you do NOT know this.

“Aren’t you lucky that you’ve got the best specialist ?”  Even if this is true, the newly diagnosed person will not be feeling lucky about anything just now. After all they’ve just been told they’ve got cancer and NO ONE would ever say this was lucky.

“The best thing you can do is be positive.”  While being positive (I prefer the word optimistic) can help with anxiety along the way there is no evidence that a positive attitude has any bearing on a cancer patient’s prognosis.

“Oh, my aunt/cousin/boss had that cancer and they’re fine now.”  This can feel very dismissive. There are many different grades and stages for every type of cancer.  You don’t know all the details of your friend’s cancer and they probably don’t either at this point.  They might like to hear about people who have survived once they’ve got over the initial shock, but probably not just now.

“This is a journey and you will get to the end of it.” Um, yeah – we will all get to the end of the journey, but you have absolutely no way of knowing how things will end for your friend.

THIS is the truth:

There are some people who are so afraid of saying the wrong thing that they just disappear.  This can be fear of hurting their friend or fear of cancer itself.  (“If you can get it, I might too…”).  Many friendships have foundered because of people’s fear.

The ‘disappearing act’ is incredibly hurtful for someone who thought you were their friend and really needs your support. 

What I personally found most helpful was when people understood that I wasn’t expecting them to ‘fix it’ for me.  Some of the things empathetic people said to me that were truly helpful are:

“I don’t know what to say; I feel helpless.  Please tell me if there is anything I can do.”

“Oh, that’s horrible news.  I’m so sorry this has happened to you.”

“You’re looking pretty good today.  How do you actually feel though?”  It’s wonderful what can be done with make-up to present a prettier picture than the reality.  Simple recognition of this is really good.

And when I was undergoing treatment and felt revolting, the best thing anyone could say to me was, “You’re having a really tough time today, aren’t you?  I’m sorry – it just sucks.”

Your friend with cancer knows you can’t fix it for them. All they need is acknowledgment from you that they are going through a tough time and an offer to be there to support them in any way you can. 

Of course no one sets out to be hurtful, but it’s important to think about the impact your words might have on someone confronting a life-threatening disease. If you simply don’t have the words, sending a funny card with a loving message is sometimes enough.

No one is a mind reader, so ask them to be specific if there is something you can do for them.  If they seem to have a hard time thinking of anything, make up your own list of suggestions such as doing the washing and/or ironing for them, mowing the lawn, taking the dog for a walk, taking the kids out for the afternoon, going to the supermarket, cooking some meals or driving them to treatment and ask what would be helpful for them.  This will make it a lot easier for you to be supportive in a useful way and will help you with your feelings of helplessness.

© Jane Gillespie

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