Category Archives: Life beyond cancer

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

CAN COUNSELLING HELP CANCER PATIENTS AND THEIR FAMILIES?

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

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

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

Why cancer counselling?

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

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

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

How might you feel?

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

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

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

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

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

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

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

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

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

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

© Jane Gillespie

 

Excellent resource for people with cancer

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

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

Highly recommended.

Jane Gillespie – google.com/+JANEGILLESPIEHolisticCounsellor

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 to 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

https://www.janegillespie.com.au/counsellor.html

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.

www.janegillespie.net

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.

http://www.janegillespie.net

Grieving the loss of a breast

After I had my mastectomy the breast cancer service did their best to match me with a volunteer in their peer support service but unfortunately the closest they could come up with was a woman who was 15 years younger than I when she was diagnosed, happily married and who had radiotherapy, not chemo like me.  About the only thing that we had in common was that we’d both had a mastectomy.

She told me, of course it didn’t worry her that she’d lost a breast; her husband loved her anyway.  Five years before my diagnosis my husband had walked out leaving me with our youngest child to raise.   All I could think was that if a man left me when I was whole, what chance did I have of anyone else wanting me now I was mutilated?

The volunteer said that her teenage children kept her spirits up by including her in all their activities and that her parents had been a tower of strength, stepping in when her husband needed to go to work. Her sisters took her to the hospital and minded the children when her husband took her away for a week to a spa to celebrate the end of her treatment.  My son lived in another city, my older daughter had a toddler to look after, my younger girl was born with a disability, my widowed mother was quite frail and my only sibling lived in New Zealand.

Five years down the track the woman I spoke to never thought about the fact that she’d had breast cancer, and life was ‘wonderful’.  I felt guilty because I didn’t want to hear about how marvellous her life was when mine was bloody horrible.

I know she was trying to give me hope but at the time I felt as though no one wanted to hear how devastated I was; that my fears were foolish.

So I just got on with things, putting on a brave face.  I told everyone that it was ‘only a breast’ after all. The important thing was that I was alive… wasn’t it?  When I looked back on that horrendous year I could see that while I might have been walking around, I certainly wasn’t ‘alive’.

The other women in the breast cancer support group I attended were unrelentingly upbeat.  The implication was that if you weren’t positive all the time you either wouldn’t get through it or the cancer would come back.  It seemed no one wanted to hear how I truly felt.

At the end of my treatment I had a breakdown.  I left town, sending my daughter to live with her father.  It was a year before I was able to work again.  My new oncologist referred me to the most wonderful support group.  I was encouraged to express all the feelings I had about having breast cancer and how frightened I was that every ache and pain must be bone cancer and every headache a brain tumour.  Their loving acceptance of exactly where I was at was the best possible medicine for me at that time.

It wasn’t until after reconstructive surgery that I realised that I’d never grieved the loss of my breast.  I chose to have an operation where my new breast was made using tissue from my tummy – major surgery.

After the operation, I was felled by the most intense anger.  I’d been so desperate to have the surgery that I didn’t really let myself think about how huge it was and how it could all have gone wrong.  But now that it was over, I was consumed with rage about the fact that if I hadn’t had this **** of a disease and lost my breast I wouldn’t have had to put myself through three separate donations of my own blood in the weeks before the operation, ten hours of anaesthetic and micro-surgery, followed by the torture of being forced to lie completely still in the one position for 12 hours after I woke up.

Because I was studying counselling at the time I realised that this anger was actually grief at the loss of my breast.  A classmate came to visit me and let me get all the tears, anger, hurt and pain off my chest – no pun intended!

My reconstructed breast is wonderful and despite the emotional agony I went through afterwards, I have never regretted having the surgery.  I’m just sorry that I didn’t know how to grieve losing my original breast before I made the decision to have the surgery.

Today, I can believe that the volunteer was telling me the truth about her husband because I have now had a wonderful relationship with a beautiful man who wasn’t at all fazed by my battle scars.

www.janegillespie.net